Abstract
Oral Presentations
Attitudes and Program Preferences Regarding Preexposure Prophylaxis (PrEP) Among Young Adults at Risk for HIV
Mary Anne Adams
Georgia State University
Donna Smith
Georgia State University
Background: This paper presents the results of focus groups conducted to prepare for the potential rollout of PrEP, or preexposure prophylaxis. PrEP would involve taking a pill a day of antiretroviral drugs, the only known effective treatment for AIDS, as a way to help prevent HIV, particularly in high-risk populations.
Methods: During the summer of 2009, 10 focus groups were conducted with 77 at-risk African American young adults in Atlanta, GA, ages 18 to 24. Participants for 8 of the focus groups (58 participants) were recruited by trained ethnographers working in communities with high STD/HIV prevalence. Two focus groups (19 participants) were venue specific, held via support groups for young African American men who have sex with men (MSM). Focus groups assessed knowledge, risk perceptions, and stigma about HIV/AIDS, access to health care, and attitudes about this potential new biomedical HIV prevention technology.
Results: Focus group participants evidenced limited knowledge about HIV transmission and safer sex practices and frequent mention of attitudes reflecting stigma/myths. Ninety percent of the participants were without any health care insurance, and were unable to afford or did not like taking prescribed oral medication. If PrEP proves to be highly effective, accessible, and free, these young adults would be interested in utilizing a daily dose of antiretrovirals for HIV prevention.
Conclusions: Focus group results uncovered culturally specific dynamics that will need to be considered in program design. The experience from this study could help inform plans for operations research during PrEP implementation with this population.
An Exploration of Adjustment Efforts of Persons With Dementia After Relocation to a Retirement Residence
Faranak Aminzadeh
The Ottawa Hospital
William (Bill) Dalziel
The Ottawa Hospital
Frank Molnar
The Ottawa Hospital
Linda Garcia
University of Ottawa
Persons with dementia (PWD) are often faced with the reality of multiple housing transitions in the course of their illness. This paper is part of a larger qualitative prospective study that aimed at understanding the meaning of “home” and “relocation” for persons with dementia. The findings are based on the data from in-depth follow-up interviews with 16 persons with mild to moderate dementia, at 2 and 6 months after relocation to a retirement residence. Participants' efforts to place themselves in their new living environments (“place integration”) were closely linked to their ability to integrate relocation into their overall life history, self-identity and meaning in life (“ego integrity”). The process began with an immediate need to “settle in” and perform their personal and instrumental activities of daily living (ADL & IADL) in order to meet their most basic survival needs. A satisfactory completion of this phase was associated with a sense of “comfort.” The next phase involved their attempts to “fit in” the new social environment to satisfy their higher order social ADL needs associated with a sense of “connection.” The transition created a simultaneous need to renew their conception of “self” (“checking in”) in order to reconcile their desire to maintain a sense of “continuity” in the face of the changing realities of their existence. The failure to achieve the above led to feelings of being displaced, “in suspense,” alienated, etc. The findings reaffirm the importance of “personal-as-identity care” in dementia and inform the design of supportive interventions.
Constructing the Meaning of Letting Go: An Exploration of the Transition Process from Licensed Practical Nurse to Baccalaureate-Prepared Nurse
Anne Barbara Arthur
Vancouver Community College
Katherine Fukuyama
Vancouver Community College
Discussion continues on the dimensions of role transition with significant innovations in programs targeted toward new graduate nurses entering practice. We suggest that if students and new graduates are to successfully transition and practice within an ethical context, educators need to understand the complexities of role transition in order to support their students. This narrative inquiry explored the meaning of the role transition process through the eyes of 22 students enrolled in a licensed practical nurse (LPN) to bachelor of science in nursing (BSN) bridging program. The students' stories are woven with stories of educators to a broader understanding of the process of role transition. Integration of time and context in the construction of the meaning of role transition was essential in understanding the transition process as it transpired over a 24-month period time frame, from entry into academia to 3 months following graduation. The stories and interview transcripts were examined using Clandinin and Connelly's (2000) elements: personal and social interaction and temporality of past, present, future, and place. A resistance narrative emerged where the student grieved “letting go” of the former role. This story transformed over time to an acceptance narrative which gave prominence to confidence, positive coping and balanced lifestyle. These narrative structures provided insights into how LPN to BSN students came to understand their role transformation experience and professional growth. Implications of this study point to the importance of implementing socialization strategies throughout the educational process to better prepare students for the challenges of professional practice.
Parents' Perspectives on Discipline With Young Children
Christine Ateah
University of Manitoba
Marie Edwards
University of Manitoba
Joan Durrant
University of Maniotba
The role of physical punishment in child physical abuse is well documented. Based on findings that attitude is the most powerful predictor of physical punishment use, public health agencies have mounted education campaigns that aim to reduce parental approval of this practice. These campaigns are based on attitude research, virtually all of which is quantitative, employing brief checklists and rating scales to measure parents' beliefs about the acceptability, appropriateness, and necessity of physical punishment. The purpose of this interpretive descriptive study was to deepen our understanding of the dimensions of parents' perspectives on discipline with young children. A sample of 30 participants was recruited through day care centers and included 25 mothers and 5 fathers. Their mean age was 31.5 years, and each participant was a parent of at least one child aged 2 to 5 years. Semistructured interviews were conducted to determine parents' views of and approaches to discipline and their goals in using their disciplinary approaches. Data analysis involved review of transcripts to identify and agree upon coding categories, coding of transcripts, and creation of descriptive grids as described by Knafl and Webster (1988) to identify themes. In this presentation, the themes of acting proactively to promote positive behavior (e.g., teaching and guidance), reacting to stop or change behavior (e.g., physical and nonphysical responses), and the emotionality of the situation will be discussed. The application of these findings to parent education programming directed at promoting positive parenting and decreasing punitive and physical responses with children will be presented.
Heteroracial Preferences of Gay Man and Their Implication for Racial Politics
David Aveline
Mount Royal University (Calgary, Ab)
In fall 2009, 25 gay Asian males (GAMs) and 19 gay White males (GWMs) who expressed an interest in Asian men were interviewed using a semistructured schedule of questions on race preferences in sexual or romantic relationships. The interviews were audiotaped, transcribed, and analyzed for their recurrent themes. I focus on the rationales behind the men's racial preferences and their implications within a larger social structure where whiteness is constructed as a default state of being and non-Whites are regarded as the “other.” Three themes emerged from GWM's preferences for GAMs: (a) feminization: seeing Asian men as less masculine. (b) infantalization: seeing Asian men as young and boyish and venerating of age. (3) orientalization: seeing Asian men as “exotic” others from mysterious cultures (see Edward Said's “Orientalism”). In contrast, conflicting themes emerged from GAM's preferences for GWMs. On one hand they saw such preferences as “natural” in a majority White society; on the other, they saw themselves as typecast and fetishized by White men and, as a result, saw sexual and racial politics as unavoidable in their quests for sex and love. Implications for sexual and racial politics will be discussed.
Understanding Health and Wellness Through Faith: Afro-Caribbean Insights on What It Means to Be Healthy and Well
Nike Ayo
University of Alberta
The presence of diverse ethnic groups within Canada, which has the largest immigration program in the world, can no longer be ignored when addressing matters of health and wellness. As part of this global migration, new religious imports have also contributed to national diversity whereby a great degree of immigrants place a strong emphasis on spirituality and religion in their everyday lives. This emphasis on spirituality and religion is highly gendered, raced, and classed. It is particularly great among many African derived cultures fundamentally shaping their everyday lived experiences. The aim of this exploratory study was to develop a deeper understanding of the meanings and experiences of health and wellness among a group of Afro-Caribbean first generation Canadian women of faith. One-on-one semistructured interviews were conducted with 13 women who were all regular church attendees at various Protestant denominations within a metropolitan Canadian city. For these women, spirituality in line with their Christian faith was a dominant overarching theme underlining how they perceived the various domains of what it means to be healthy and well. Such domains of health and wellness as indicated by participants include peace of mind, benevolence, personal relationships, self-care through aesthetics, financial stability, employment status and exercise and diet. Findings from this study will contribute to the growing body of literature on spirituality and health. Furthermore, having a diversified understanding of what health and wellness means among a heterogeneous Canadian population could provide improved health services and benefits to those who such professions aim to work with.
Susac's Syndrome: An Ethnomethodological Analysis of the Social Practices That Constitute Disease and Illness
Patricia Babinec
The University of Calgary
What is the value of an ethnomethodological approach to the social construction of new medical knowledge? A rare triad of symptoms which include changes in personality, hearing, and vision was labeled Susac's Syndrome in 1986 in the United States. Currently, there are 200 diagnosed cases worldwide. The Susac's Syndrome International Collaborative Study (Susac-ICS) was created in 2010 to collect, analyze, and share information regarding the clinical features, clinical spectrum, clinical assessment, natural history, treatment, clinical course, and long-term outcome of Susac's Syndrome. Through participation in the Susac-ICS, researchers, clinicians, and patients will contribute to the production of new medical knowledge. What are the processes through which physicians, researchers, caregivers and patients collaborate to construct and represent a rare disease? How do socially constructed and institutionally shaped understandings of a rare medical condition shape people's concerns with caring about and living with confusing and difficult bodily experiences? The aims of the doctoral project on which this presentation is based are (a) to examine how communication and other social practices construct and legitimize bodily suffering and (b) to demonstrate how institutional ways of making sense shape and are shaped by members' concerns. Ethnomethodology is the study of the methods people use to produce and sustain social order in social interaction. By drawing on the ethnomethodological literature, this presentation will discuss how people within the institution of medicine socially construct the terms, phenomena and narratives that organize a disease entity.
Connecting Gender and Health Inequalities to Resistance and Survival in Kathmandu: Lived Experiences of Former Street-Based Commercial Sex Workers
Iccha Basnyat
National University of Singapore
Marginalization is arguably located in political and economic systems such as: development, housing, labor, migration, education and access to health services. Impoverished structures that limits women's education, jobs, access to resources is often manifested into commercial sex work. Therefore, this paper aims to (re)position sex work, among Nepalese women as an effect of macro policies (i.e., lack of access to education and resources) that place women in the margins. Based upon a theoretical discussion of power, structure, health, resistance and the politics of sex work (i.e. economics, law, rights), this paper examines how lived experiences offer an entry point to locating CSWs as active participants enacting agency for day-to-day living. Seventeen in-depth interviews were conducted with former commercial sex workers currently working as community mobilizers (CM) for a community based organization that reaches out to current CSW's for voluntary testing and counseling (VCT). The interviews resulted in twenty-two taped hours. The interviews were open-ended and semistructured that allowed the researcher to inquire about navigating structures for day-to-day living, access to macro structures, maintaining health and long term needs. Thematic analysis revealed the following four themes: (a) surviving through sex work; (b) seeking long term solutions; (c) enduring stigma; (d) health service utilization. Women's narratives illustrate that “reducing” her body to a sexual function is influenced by the macro limitations within which she is bound. Yet, she engages as an active participant in every day resistive strategies within her available set of structural possibilities and limitations.
Shopping for Treatment: Tuberculosis in Urban Slums in Delhi, India
Aruna Bhattacharya
Public Health Foundation of India
“L,” 34, a daily wager in a garment factory was suffering from TB from last 14 months.. He narrated about his experience with several doctors and their treatment regime with great precision with their names and with the location of their clinics. At the time of the documentation of this case study, L was undergoing treatment for TB under DOTS's category-II regimen, which was for seriously ill and relapse cases of tuberculosis. To begin with, he had bouts of fever which he ignored till the time there was remarkable weight loss and loss of appetite. He resorted to private allopathic doctor, where he was given antibiotics and advised for chest X-ray. He took the treatment for 5 days, and his X-ray showed tuberculosis in his right lung, yet he preferred to leave the treatment as it was expensive for him to continue. After this, he sought treatment from an array of practitioners, and in all he sought treatment from five practitioners before resorting to a government hospital, where he was referred to a DOTS center for TB treatment. Pathway for shopping for treatment was private allopathic doctor (left the treatment after diagnosis; expensive treatment) to unregistered practitioner (no improvement in health) to faith healer (no improvement in health) to private allopathic doctor (visited on family's intervention, failed to comply because of expensive treatment) to unregistered practitioner (no improvement in health) to government hospital (advised to start TB treatment from nearest DOTS center) to DOTS center (taking treatment in category-II regimen).
The Politics of Critical Action Research in Conflict-Affected Areas in the Global South: The Case of Reproductive Health in Mindanao, Philippines
Danielle Bishop
York University
Many qualitative methods scholars consider critical action research a method by which we may engage with the lived experiences of subjects in a reflexive manner and work to effect change, emphasize human rights and agency, and decolonize the research process. Often overlooked is the degree to which this tool is a highly political device, neither displaced from ideology nor detached from the intersections of race, class and gender. As a window through which to view, as well as extend, this critique of critical action research, the paper draws from my experience as researcher in the conflict-affected area of Mindanao, Southern Philippines, working in maternal child health. The central focus is on the role and political nature of the framework of emancipation in critical action health research within war and conflict-affected areas. I argue that, within these settings, the method is embedded in a web of power relations and a global capitalist political economy and it may therefore unfold in ways detrimental to its underlying principles. Thus, though this critical paradigm may function to “unshackle” communities from imported ways of knowing, it may simultaneously and covertly reproduce problematic and westernized policies that render the recorded lived experiences invisible. In short, the presentation highlights the nuanced yet critical junctures in which participatory research, and the researcher, may emerge as agents of veiled, compassionate coercion nothing short of a new spectre of colonialism.
The Enigma of the Couvade Syndrome: Men's Experiences of Pregnancy
Arthur Brennan
Kingston University & St George's University of London
Sylvie Marshall-Lucette
Kingston University & St George's University of London
Couvade Syndrome is a world-wide phenomenon occurring in industrialized countries, but it has wide international variance and its relationship with ethnicity is consistent. It affects biological fathers particularly during the first and third trimesters of pregnancy with cessation of symptoms after birth. International studies reveal a lack of clarity in the syndrome's definition. Nonetheless, a plethora of theories has been put forward in an attempt to explain the syndrome. This paper draws from a U.K. qualitative study of the syndrome, which aimed to explore the nature, frequency, duration and cessation patterns of men's pregnancy-related symptoms, suggestive of the Couvade Syndrome, across the three trimesters of pregnancy and labor. Ways in which these symptoms were managed and explained were also investigated. Fourteen expectant men, aged between 19 to 48 years, from diverse social and ethnic backgrounds agreed to be interviewed. An inductive analytical approach was used to examine participants' report of their experiences. One of the three emerging themes, the ‘Enigma’ of the syndrome will be the focus of this paper. Thus, the unexplainable symptoms and those based on conjecture will be discussed. The nature of the syndrome will also be addressed from the perspectives of those whom the men had consulted about their symptoms. Conclusions drawn from this study suggest that further qualitative methodological studies would provide additional insight into men's experience of pregnancy. They might also highlight the need for expectant men's health to be accorded a greater profile in current antenatal care provision.
Cardiopulmonary Resuscitation in the Emergency Department
Stephen Brummell
The University of Nottingham
Jane Seymour
The University of Nottingham
Gina Higginbottom
University of Alberta
In spite of media images to the contrary, unsuccessful resuscitation in emergency departments is the most common outcome. Staff involved in cardiopulmonary resuscitation must therefore evolve strategies for dealing with both the stresses of resuscitation and sudden death. This paper presents findings from a doctoral study exploring resuscitation practices within Emergency care, to identify how team members construct a cardiac arrest, and conceptualize death and dying. An ethnographic approach was employed to capture practices that were socially constructed within emergency care. Data collection was in two emergency departments in the North of the United Kingdom, one semiurban and one urban, using participant observation and interviews. Participant observation of resuscitation attempts was undertaken in the semiurban primary unit only. Semistructured interviews of nursing and medical staff were undertaken in both units. The approach to analysis involved the integration of field notes, analytical memos, and interview data to construct cases for interpretation. Data revealed complex resuscitation categories constructed by participants to differentiate resuscitation situations. These categories were constructed for each patient using a combination of bodily and technical information that were indicative of dying, but were given meaning by their social context. Locating the patient within the resuscitation categories was the main determinant of whether resuscitation should continue, and if so, for how long. Determining the point when resuscitation was withdrawn required the alignment of technical with bodily dying, enabling participants to construct an acceptable death.
Fathers' Childhood Injury Prevention: Risk and Protection Decision-Making
Mariana Brussoni
University of British Columbia
Lise Olsen
University of British Columbia
David Sheftel
BC Council for Families
Anne George
University of British Columbia
Injuries are the main risk to children's health, and research has shown that parents' attitudes and practices have a major impact on children's injuries. Fathers have a major impact on various aspects of child health and development, yet little is known about their roles in preventing injuries. Every day fathers face decisions regarding the level of risk they are willing to expose their children to and the level of protection they feel is necessary. Understanding of their decision making process is limited, yet is critical to injury prevention efforts. Interviews were conducted with a diverse sample of 32 fathers of children aged 2 to 7 years in British Columbia. Questions addressed fathers' roles and typical activities with their children, child safety concerns and safety practices. Grounded theory methods guided data analysis. Fathers believed a central part of their role was helping their children grow and thrive. A key aspect of this role involved actively exploring the world with their children through a variety of physical and play-based activities. Fathers made decisions about the appropriateness of activities, managing the dilemma between protecting their child and exposing them to risk and opportunity. They considered many positives aspects of risk and minor injuries, as well as the negative side of injury, including the potential for physical and psychological consequences. Injury prevention interventions can benefit from understanding the meanings and priorities fathers hold about their children's safety, creating messaging that resonates with fathers to increase relevance and success.
Critical Narrative Approaches to Health Research
Marla Buchanan
The University of British Columbia
Qualitative approaches to health research most commonly utilize methods that have long standing in the human sciences. The typical approaches used in research are grounded theory, phenomenology, case study, and ethnography. In the past two decades, critical approaches have gained ground in qualitative methods. Critical approaches based on critical social theory and critical social linguistic theory have been developed and include critical ethnography and critical discourse analysis. Narrative methods are also becoming popular in qualitative methods; however, there are few models of critical narrative methods to draw from. In this presentation, an overview of critical narrative methods of research will be reviewed. Discussion of how critical narrative methods have been used in health research will also be addressed.
Prospective Outcomes of Injury Study (POIS): Results From Phase 1 of a Qualitative Study
Mary Butler
Otago University
Sarah Derrett
Otago University
Injuries are costly to individuals and society, but we currently know little about injured people's outcomes. The Prospective Outcomes of Injury Study (POIS) is a multimethod study that aims to determine the injury, health and social rehabilitation, personal, social, and economic factors leading to disability outcomes after injury for 2500 New Zealanders. The study has been carried out in the unique macro-social context of New Zealand's no-fault system for personal injury compensation, the Accident Compensation Corporation (ACC). The lack of an adversarial legal environment created by this system tends to remove stress from claimants and can promote an early return to work, but there has been little qualitative work done on the experience of claimants. In this paper we use an interpretive phenomenological approach to explore with 20 study participants their lived experiences and perceptions of injury and outcomes immediately after the injury. The suffering caused by injury brings the injured person into an existentially charged relationship with potential carers from their personal network, ACC and workplace. Bourdieu's (1985) concept of social capital provides a theoretical framing, which highlights the varying capacity of claimants to secure benefits by virtue of their membership in social networks. This paper examines claimant behavior and moral responses to care as possible factors associated with the emergence of disability.
Service Providers' and Street-Involved Youth Perspectives on Preventing the Transition into Injection Drug Use among Street-Involved Youth: Successes, Barriers and Opportunities for Youth Prevention Services
Jane Buxton
BC Centre for Disease Control
Larissa Coser
BC Centre for Disease Control
Natasha Van Borek
BC Centre for Disease Control
Youth Co-Researchers
BC Centre for Disease Control
Michael Botnick
BC Centre for Disease Control
Catherine Chambers
BC Centre for Disease Control
Darlene Taylor
BC Centre for Disease Control
Elizabeth Saewyc
University of British Columbia
“The Youth Injection Prevention (YIP) Project” is a research study collaboratively conducted by the BC Centre for Disease Control, University of British Columbia (University of British Columbia) School of Population and Public Health, University of British Columbia School of Nursing, community partners and youth coresearchers. It focuses on identifying service components that may prevent the transition into injection drug use among street-involved youth aged 15 to 24 in Metro Vancouver, BC, through both service providers' and street-involved youth's perspectives. Twenty-four (n = 24) interviews were conducted with service providers from February to June 2009; 15 interviews and 10 focus groups were conducted with street-involved youth (n = 60) from November 2009 to April 2010. Service providers and youth participants were recruited through community partners. Audio recordings and field notes from interviews were transcribed verbatim. Emergent themes were identified by constant comparative method, while NVivo 8 qualitative software was used to organize the data. Comparing youth and providers' perspectives on this topic, more similarities than differences emerged. Main threads identified were: service components, barriers, and recommendations. Preliminary findings suggest (a) service components that attract and engage youth include: capacity and relationship building, nonjudgmental policies, peer education, and recreational activities; (b) barriers that prevent youth from connecting with services include abstinence based-programming, age restrictions, limited hours/staffing, and service location; (c) recommendations for prevention strategies include community-specific interventions, low barrier services, and youth input in program design, implementation, and evaluation. Study results will inform youth-driven, community-based prevention strategies that aim to prevent the transition into IDU and/or reduce the harms associated with injecting among street-involved at-risk youth.
Stress and Impact Among Family Caregivers of Elders With Dementia in Southern Taiwan
Wen-Yun Cheng
National Cheng Kung University
Dementia care is an overwhelming and a heavy burden on family caregivers (FCs). However, limited research has been published on the day-to-day caregiving experience. The aim of this research is to investigate the daily stressors and overall impact among family caregivers of elders with dementia. Data were collected using an unstructured nondirective method in accordance with in-depth life history interviews. Narrative research explores personal experiences and provides insights into caregiving experience. Twenty-seven FCs, 12 males and 15 females, were recruited from neurological clinics of a medical center in Southern Taiwan. The age of the family caregivers ranged from 28 to 82, with a mean of 53.2 years. Themes were organized using a content analysis approach. The four subthemes for stressors included the growth of behavioral problems, daily care dilemmas, symptom changing chaos, and family dynamic depletion. The four subthemes for impacts included suffered physique, emotional misery, disordered lifestyle, and deteriorated interactions. The findings aim to provoke the awareness of dementia and care related issues, in hopes of establishing multidisciplinary management protocol and advanced social welfare. A comprehensive description of a narrative research approach and interview skills could help practitioners to facilitate and cultivate person-centered care.
“Ethics Is for Human Subjects Too”: Understanding Participant Responsibility in Health Research
Susan Cox
The W. Maurice Young Centre for Applied Ethics, University of British Columbia
Michael McDonald
The W. Maurice Young Centre for Applied Ethics, University of British Columbia
Sara Hancock
The W. Maurice Young Centre for Applied Ethics, University of British Columbia
In Canada, all research involving human subjects must undergo review to ensure that it conforms to the ethical standards described in the Tri-Council Policy Statement. Despite the considerable energy devoted to ethical review, little attention is however given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or are participants motivated primarily by more individualistic benefits? Beyond respect, what if anything do research participants feel they are owed for their participation? And what do they feel that they themselves owe the researcher and/or the research? Drawing on in-depth individual interviews conducted with a diverse sample of 41 participants in health research, this paper focuses on participant perspectives on responsibility in research. Highlighting the range of ways that participants describe their involvement in research and commitments to being a “good” subject, we develop a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are, rather, best viewed as ideal types that typify a set of circumstances and axiological leanings. The understanding these narratives contribute is salient to enhanced appreciation for the social good that research participants contribute. It also has significant implications for researchers who seek more human-subject centered approaches to research recruitment and retention and research ethics boards who strive to apply a subject-centered perspective in evaluating the ethics of research protocols.
An Arras of Prayer
Corinne Crockett
University of British Columbia Okanagan
de Sales Turner
Deakin University
Prayer has been a topic of research often conducted under the guise of such terms as directed intentionality, distance healing, and focused thought. Many studies demonstrate that positive health outcomes result when health care practitioners use prayer in their day-to-day interactions with patients. Despite this, it is also reported in literature that some health carers, for example registered nurses, avoid using prayer in their interactions with patients, for fear of being ridiculed, negatively sanctioned, or even shunned by patients. In this presentation we weave a rich and textured Arras of prayer, in the form of a vignette constructed from the dialogue of 6 registered nurses who self-reported using prayer as part of their daily care for patients. These participants, with whom we engaged in a narrative enquiry to explore their use of prayer in practice, made highly visible their prayer practices and revealed their capacity to enhance not only the healing environment of their patients, but also that of their coworkers and themselves. Indeed, as some participants suggested, through prayer they became the healing environment of and for their patients, a concept that for many may be foreign.
An Investigation of the Meaning of Work and Its Translation Into Meaningful Retirement for People With Intellectual Disabilities
Joan Dacher
The Sage Colleges
Barbara Pieper
The Sage Colleges
A discussion of retirement options for individuals with intellectual and developmental disabilities (I/DD) is relatively new. As individuals with I/DD are living longer, members of this vulnerable population are more likely to enter into a retirement phase of life, much like the general population of older adults. Few if any data are available to inform the planning, policy agenda and resource allocation for this new phenomenon. The purpose of this project was to describe the lived experience and meaning of work for a group of 37 individuals (consumers), as the first step in partnering with them and the agencies that support them, to create meaningful retirement options. The meaning of work (as opposed to retirement, a more abstract concept) is a way of gaining access to thoughts and feelings about an activity they engage in daily and serves as a cornerstone and organizer of daily life. Therefore the research question for this study was: What is the lived experience of work? The interview process involved 37 individuals who responded to a series of discussion questions/prompts. The discussions were videotaped; each tape was transcribed and analyzed utilizing van Manen's existential life world themes as guides: spatiality, temporality, corporeality, and communality for a full explication of the meaning of work. Findings include the desire for meaningful engagement, a new experience of work as fatiguing, the centrality of the connection with their community and work filling time that would otherwise be empty. Implications for policy and practice are described.
“Here” and “There”: Life Stories of Iranian Immigrants and Refugees From the Diaspora
Fay Mahdieh Dastjerdi
School of Nursing, York University
Narrative inquiry provides an opportunity for researchers to listen to people's life experiences. The specific aim of this research was to learn about the meaningful life experiences of Iranians residing in Canada as narrated by immigrants and refugees living in Edmonton, Alberta. Using narrative inquiry methodology, I conducted three in depth interviews with 17 first-generation adult Iranian immigrants and refugees (11 women and 6 men) who had immigrated to Canada within the past 15 years. This study revealed the richness of displaced narratives and the attempts to reconstruct the meaning of “self” sociolinguistically. Participants' descriptions of their life experiences revealed themes of “living in limbo,” “re-figuration,” “resistance,” “regret,” and “living here and there.” They defined everyday life as an “on going negotiation.” They tried to define and give a meaning to “who they are” through language. In construction of their displaced identities, they attempted to understand the linguistic and cultural differences of self-presentation. In conclusion, listening to immigrant voices in narrated life experiences can provide an opportunity for Canadian institutions to introduce specific health promotion strategies, and create programs that are tailored to immigrants' needs and improve their well-being. At the community level, nurses play an important role in planning new programs and services that give a voice to the displaced individuals. Creating social change is vital to improving immigrants' well-being, integration, and adjustment. The result of this study suggests that health care providers should move beyond holistic care and understand that health is shaped within the context of everyday life experiences.
Methodological Issues in Conducting Research With Immigrant and Refugee Populations
Fay Mahdieh Dastjerdi
School of Nursing, York University
The purpose of this presentation is to describe the most common methodological issues that I encountered when conducting research with Iranian immigrants and refugees in Canada. Conducting research with individuals from developing countries such as Iran is different than doing so with people from developed countries. Such studies need special considerations that take into account the historic and cultural backgrounds of the people being researched—on a contextual, conceptual, and linguistic level. In qualitative research, the contextual differences between a war-torn country and a society at peace needs to be considered. Individuals who experienced years of dictatorship, and military and ideological turmoil tend to be distrustful, doubtful, and fearful. As a result, they are reluctant to provide accurate information and reliable answer to questions. Even if they trust researchers and are willing to provide accurate information, they may refuse to sign any documents (such as consent forms), especially those used in government-related studies. The conceptual issue in studying immigrants and refugees is to apply appropriate use of instruments and their translations. Since concepts and meanings are culturally and linguistically constructed, it is difficult to translate measurements, questionnaires, and tools. This presentation explores methodological issues used to study immigrants and refugees from developing countries in general and from Iran In particular. Finally, recommendations will be discussed to resolve some of the major difficulties encountered in each of these areas.
Women in Orthodontics and Work-Family Balance: Challenges and Strategies
Sarah Davidson
University of Alberta
Louanne Keenan
University of Alberta
There has been a dramatic increase in the number of females entering the orthodontic profession over the past few decades; however, there is very little published literature on female orthodontists and work-family balance. This phenomenological qualitative study involved a purposive sample of 13 Canadian female orthodontists, ranging in age from 29 to 59. Transcribed semistructured telephone interviews were analyzed for recurrent and emerging themes, which were validated by participants. A team of qualitative researchers critiqued themes and field notes; saturation of data was achieved. Specific work-family balance challenges female orthodontics identified included scheduling issues, dependence on referrals, large amounts of paperwork, and lack of professional support. Scheduling issues related to the length of treatments (2–4 years), frequency of recalls (4–6 weeks), and large number of patients scheduled per day (80–100). Lack of professional support was similar to other specialties: limited number of orthodontists, lack of female professional mentors, and lack of guidance from professional organizations. Female orthodontists defined work-family balance as a means of finding satisfaction in both personal and professional capacities. They understood that achieving balance involves compromise and establishing priorities. Role conflicts and adaptations were acknowledged. Adaptations to the maternal role included (a) timing of children, (b) maternity leaves, (c) employing a support system, (d) breastfeeding, (e) segregation from other mothers, and (f) personal and relationship time. Adaptations to the professional resulted in (a) changes to practice structure, (b) modifications to practice during maternity leave, (c) cutting back days; and (d) reassurance of referrals.
Dancing With Dementia
Anita De Bellis
Flinders University, Adelaide Australia
Alison Wotherspoon
Flinders University, Adelaide Australia
Sandra Bradley
Flinders University, Adelaide Australia
Bonnie Walter
Flinders University, Adelaide Australia
Pauline Guerin
Flinders University, Adelaide Australia
Maggie Cecchin
Alzheimer's Australia (SA)
Jan Paterson
Flinders University, Adelaide Australia
This qualitative research was based on community participatory principles and “real life” case studies to produce an educational resource for undergraduate health care students across multiple health disciplines in Australia on person-centered care and how to interact with a person who has dementia. An advisory group of practitioners and experts provided 35 case studies from their experiences. The case studies were then themed into five categories, scripted and reenacted into five scenarios to illustrate positive person work and malignant psychosocial interactions demonstrating best practice to students. Through this research, realistic composites in the form of filmed docudramas were able to explicitly illustrate how to interact with a person who has dementia and were accompanied by a workbook containing information on dementia and the theoretical underpinning of person-centered care, as well as reflective questions for students and educators. The evaluation concluded that undergraduate health care students, after reading the workbook and viewing the scenarios, became interested in dementia care, improved their knowledge base on dementia, increase their confidence in how to interact with a person with dementia, and also developed their understanding of persons with dementia. An evaluation by academics in four universities across multiple disciplines also identified the resource as highly valuable for teaching and learning. The development and production of the educational resource was accomplished by the unique and innovative use of filmed reenactments about the reality of clinical practice, the application of person-centered care theory and reflective questions on the case scenarios researched from the field of practice.
Cultural Explanatory Model of Depression Among Iranian Women in Three Ethnic Groups (Fars, Kurds, and Turks)
Masoumeh Dejman
Karolinska Institutet
Solvig Ekblad
Karolinska Institute
Ameneh Setareh Forouzan
University of Social Science and Rehabilitaion Science
Background: Depressive disorders are responsible for as many as one in every five visits to primary care. Women suffer more than men according to surveys in Iran and other countries. This study explores how women's depression is conceptualized among Iranian people in the three cities located in Iran, representative of three major ethnic groups (Fars, Kurds, and Turks).
Methods: Thirty eight men and 38 women from the general population, classified by level of education participated in 12 FGDs in the aforementioned cities by using a case vignette describing a woman with major depression. In addition, 25 depressed women and 14 relatives were interviewed individually regarding how these women and their families conceptualize the patients' conditions and help-seeking process. The content analysis was used for analyzing the data.
Results: Among most of the study participants depressive symptoms were perceived as a transient reaction to the stressors. Most participants named the depressive symptoms as distress of nerve/soul, problem of nerve/soul and depression. Other names were “darikhma” (Turkish participants), and “tarjoman” (Kurdish participants). All connected the illness with an external stressor caused by loss, environmental causes, gender-linked stressors and internal factors caused by emotional factors, cognition distortion, and hormonal factors. Coping mechanisms involved two strategies: solving problems by seeking help from family and friends, religious practice, and engaging in pleasurable activities, and seeking professional and traditional support. The study participants tended to have a psychosocial explanatory model linked with preferred seeking help from informal healers as the first treatment step.
“You Are Terrified and Wondering What Is Going on With Your Child”: Parents' Experiences of Expanded Newborn Screening
Jane DeLuca
University of Rochester, Rochester, NY
Neonatal screening has been altered by new technologies which enable the detection of many rare inborn errors of metabolism. As a result, more infants are referred for evaluation of abnormal screening results. Little is known about the effects of the referral and evaluation process on families. This study was a qualitative description of parents' experiences of the newborn screening evaluation process. Forty-four parents from 30 families in New York State whose infants had abnormal results were interviewed, in most cases during the diagnostic evaluation and after final results were known. Forty-eight interviews were transcribed and analyzed using content analysis. Parents were derailed in their adjustment to life with their new infants by the unexpected news of abnormal screening results. The initial news of the referral was terrifying for parents, and few had any previous knowledge of newborn screening. Parents selectively communicated the news of the referral to family members and friends. They also attempted to limit their distress by managing their exposure to internet information. Although most parents found the visit to the treatment center helpful, the events of confirmatory blood sampling of infants, waiting for final results, adjusting to a diagnosis, or receiving inconclusive results were traumatic. Some were left uneasy by the process and unsure of the meaning of their results. Applying new genetic technologies for the public good can be problematic. Understanding the impact of screening programs for families is essential for avoidance of harm and to identify needed improvements in parent education and services.
Buddhism, Biomedicine, and Happiness in the Healing Traditions of Contemporary Bhutan
Amanda Duncan
University of Alberta
Often likened to the mythical Shangri-La, Bhutan is a tiny country bordered by Tibet and India, and is the last remaining independent Buddhist kingdom. This ethnographic research examines Bhutan's medical system along with concepts of health, illness, and decision making around treatment options. Taking a highly contextual approach, the paper will also touch on the larger sociocultural and geopolitical framework, including Tibetan Buddhism, rapid culture change, and a development policy referred to as Gross National Happiness (GNH). This is a topic previously unexamined in one of the least studied and difficult to access nations in the world. Research was undertaken collaboratively with a Bhutanese “counterpart” and involved participant observation, semistructured, and informal interviews. The medical system in Bhutan is a unique combination of Tibetan and Western biomedical systems, along with numerous other practitioners located within Bhutan's Tibetan religious complex. Tibetan medicine is a significant and largely unaltered aspect of medicine and culture in Bhutan. This research is important because it challenges other models of culture change where biomedicine, as one aspect of the globalization process, comes to dominate other indigenous or traditional systems of medicine. Rather, findings reveal that both Tibetan and biomedical systems are permeable and that health seekers in Bhutan are pragmatic, flexible, and access multiple health care options, which are often used in a complementary way. Bhutan's health care system is a model for a more integrated approach to health care where biomedicine and traditional medical systems can be used side by side.
Implications of Within Profession Differences in Nurse-Physician Work Relationships on Efficiency and Care Coordination.
Karen Dunn Lopez
The University of Illinois Chicago, College of Nursing
The ability for physicians and nurses to work effectively with one another is critical to timely, safe, and high-quality health care. Although much has been written about nurse-physician work relationships, a focus of prior research has highlighted the differing perceptions between nurses and physicians. In this qualitative study, 10 inpatient physicians and 10 nurses were interviewed about their work relationship. Semistructured interviews were transcribed verbatim and analyzed using directed content analysis. Directed content analysis begins deductively with an existing conceptual model or theory. Text that does not “fit” into the deductive coding schema are assigned new codes inductively. All codes are reexamined iteratively. Unlike prior research, differences within the professions emerged as being more important than between professions. For physicians, differences emerged between hospitalists and non-hospitalist physicians. The hospitalists' role structure and patterns of frequent informal patient-centered communication positively influenced perceptions of nurse-physician work relationships. For nurses, differences emerged between the BSN and ADN educated nurses. BSN nurses were cognizant of the effect of proactive communication with physician on care efficiency, coordination, and patient outcomes. ADN nurses, feeling physicians were “above” them, waited for physicians to approach them and expressed more passive views of their role. Despite earlier findings of differences between the professions, there is much common ground to exploit that can result in improved efficiency, patient outcomes, and work relationships. Expanding understanding of how hospitalists and BSN nurses work together may provide fertile ground for developing new models for care coordination in acute care.
Retrospective Views of Care Recipients' and Caregivers' Perspectives on Nursing Home Placement
Yvonne Eaves
The University of Alabama at Birmingham
The elderly experience a higher incidence of multiple chronic illnesses, disability, and dependency than any other age group, thereby increasing their risk of institutionalization. Thus, a pressing issue that faces families today is whether to relinquish their caregiving role for an elderly relative in favor of institutional long-term care (LTC). Making decisions about the long-term care of an elderly person is usually a complicated task in that it is emotional and conflictual. Often older adults, their families, and health care providers hold differing beliefs and opinions about the future care of elders. The purpose of this ethnographic study is to examine the caregiving trajectory and caregiving transitions that occur over time in rural African American families who provide care for an older adult relative who suffers from one or more chronic illnesses. This paper will report on a subsample of five families in which the older adults were current residents in a subacute or LTC facility. The Caregiving Transitions Interview Guide was used to elicit narrative data from participants who were asked to respond to questions about episodic and emergent health events and changes in the caregiving situation. Interviews were audiotape recorded and later transcribed verbatim. The transcribed interviews and fieldnotes were merged into a larger word processing file for data coding and analysis. Analysis is currently ongoing. However, preliminary results suggest that the desires of health care professionals, particularly physicians, and family caregivers carried more weight in decisions about LTC placement than the older adults who had to relocate.
“Head on to …”: A Film Exploration of the Lived Experience of Brain Injury
William Fairbank
Bridgeham Centre for World Peace
Mary Butler
Otago University
This seminar describes the results of an international research collaboration, based on an ongoing participatory action research project, between Dr. Mary Butler and brain injured artist and film maker, William Fairbank. It aims to increase research capacity within the brain injury community. It is the sequel to a film directed by William, “Head on…,” which was a sustained examination of what it is like to have short term memory loss, using actors and a series of interviews. The film featured in this paper looks at the lifelong adaptation to brain injury from the perspective of five artists. It starts with sculptures made by William in the early years after his brain injury. These are in the form of “stations of the cross,” which are on permanent exhibition at Lincoln Cathedral, and they provide a meditation on the lived experience of brain injury. The artists interviewed all have the capacity to produce beautiful work, even though they have all suffered from significant brain injury. The film is an expression of what the brain injury community believes that people should know and it will be a useful tool for rehabilitation therapists and families querying what the future holds after a brain injury, as well as a tool for reflection for people with brain injury. The intention is that it will be come part of a series expressing various aspects of the experience.
Understanding the Needs of HIV-Positive Gay Men at Time of Diagnosis for a More Comprehensive and Appropriate Response
Olivier Ferlatte
Simon Fraser University
Malcolm Steinberg
British Columbia Centre for Disease Control
We conducted interviews with a sample of 20 HIV-positive gay men to better understand their needs at the time of HIV diagnosis to guide the development of an accessible, enhanced intervention postdiagnosis. Interviews were recorded and transcribed and then analyzed using a thematic approach. All men in our sample felt that the counseling offered to them at the time of diagnosis was inadequate and that in most cases their emotional needs were ignored. What is more, most men felt that the trauma and stigma they experienced postdiagnosis were dismissed or underestimated by health care providers. Most participants felt that counseling from a peer, that is gay and HIV positive, would have been beneficial to them in their dealing with their new diagnosis. A central theme in our data was the perceived benefit of having HIV-positive peers in social and support networks at the time of diagnosis. Interviewees who noted an absence of HIV-positive peers in their networks appeared to have dealt much more poorly with their diagnosis, experienced greater stigma and accessed community services much later than interviewees with HIV-positive peers in their networks prior to diagnosis. The results from this study led us to develop a peer counseling support program for gay men newly diagnosed with HIV. One aim of this program is to assist participants in building a supportive social network with other HIV positive individuals, to help build early coping strategies and nurture long term well-being.
Building Bridges Between Different Social-Science Approaches: Moving Between and Across “the Bottom up” and “the Top Down” Standpoints
Manuela Ferrari
University of Toronto
In “Building bridges. The possibility of analytic dialogue between ethnography, conversational analysis and Foucault,” Miller and Fox (2004) engaged in a theoretically grounded examination of the parallels between the three social-science approaches (ethnography, conversational analysis, and Foucauldian discourse analysis) in an attempt to elucidate the differences and similarities among them. Although I value the authors' attempt to define and explain the possibility of constructing bridges between different social-science approaches, I feel that the “so what” question was not fully answered in the text. In an attempt to answer this question, I used the “Obesity and Eating Disorders: Seeking Common Ground to Promote Health Final Report” to shed light on the methodological and analytical process. This final report was created as a summary of a discussion that took place during a national symposium that brought together researchers, practitioners, and policy makers from the obesity and eating disorders fields. Ethnography, conversational analysis, and discourse analysis together fostered a better understanding of the constructed aspect of my data. Additionally, these three social-science approaches allowed for further exploration of the tension between obesity and eating disorders fields. Specifically, the three analytic approaches helped to unpack both micro as well as macro standpoints of the tension, as the language used (e.g., the meaning attributed to weight by participants) defines the actors' position in this discussion (the bottom up) as well as it contributes to the tension/polarization of the two fields (the top down).
Taking a Risk: Exploring Alcohol and Pregnancy With Women in Scotland
Katharine Ford
The University of Liverpool
The risks of consuming alcohol during pregnancy are well documented and include spontaneous abortion, stillbirth, and a range of developmental disabilities which are collectively referred to as fetal alcohol syndrome (FAS). Despite ongoing debates over the level of exposure to alcohol that is harmful to fetal development, in 2007 the Scottish Government recommended that women abstain from drinking alcohol while pregnant or trying to conceive. However recent research indicates that 1 in 4 women still consume alcohol during pregnancy in Scotland. In this paper I present findings from 22 in depth interviews using biographical narrative interpretative method (BNIM) with women living in urban and rural environments, all of whom had a child under the age of 2 years. To gain a deeper understanding of the place of alcohol in their lives over time, I used a life course and lifestyle perspective to explore their health and lifestyle choices during pregnancy. Specific areas covered during the interviews were their attitudes to drinking during pregnancy and their awareness of the associated risks and attitudes toward existing public health campaigns and interventions. My findings suggest that multiple factors influenced and directed women's attitudes toward alcohol consumption during their pregnancy, including the social context in which they drank alcohol. This paper will focus on the influence of the immediate, local, and social environment on women's health and lifestyle choices during pregnancy, while making reference to other related themes, such as guilt, social exclusion, and confusion that women faced over the often conflicting messages they received.
Crossing Boundaries: Transformational Stories of Adult Children of Parents With Serious Mental Illness
Kim Foster
The University of Sydney
Adult children of parents with serious mental illness are a substantial yet marginalized group whose needs and experiences have remained largely unrecognized in the literature and mental health service provision. Previous, although limited, research has focused on adult children's vulnerability for problematic psychosocial outcomes, while also revealing their potential for considerable resilience. This presentation navigates the boundaries of narrative as inquiry and addresses the methodological tensions between postmodernism and narrative inquiry. The design and methods of this postmodern narrative inquiry are presented. The study sought to disturb the silences on the issue of adult children of parents with serious mental illness in Australia and bring to the center the voices of a diverse group of adult children. In particular, transformational stories shared by participants in the study will be discussed in terms how they illuminate the process of wounding and healing that may occur for adult children. Ricoeur's three stage spiral of mimesis—the narrative emplotment of experience through time s—provides a framework for understanding the transformational role of narrative through “narrative repair” of wounds of experience. Narrative repair can offer transformative potential which recognizes individuals' ability to reconstruct alternate stories of experience. In this way, narrative healing from wounding is a story of transformation where the person can be supported, through intersubjective connection with others such as health professionals, family, and friends to shape an alternate plot to dominant discourses and cultural narratives on physical and/or mental and emotional illness.
“Knowing People Are Coping With What You Have to Cope With Is Reassuring”: Why People Use and Value Experiential Health Information
Emma F. France
University of Stirling
Vikki Entwistle
University of Dundee
Ruth Jepson
University of Stirling
Sally Wyke
University of Stirling
Information about other people's experiences of health and health care (henceforth “experiential health information,”: or EHI) is increasingly available, but very little is known about how people use it. We report a qualitative investigation on how people react to, evaluate, and use EHI for health care decisions. e conducted 12 focus groups and nine in-depth interviews with 62 adults in the United Kingdom who faced decisions related to ending a pregnancy for fetal abnormality, prenatal testing, lymphoma treatment, or caring for a relative with dementia. Participants discussed their own information use plus examples of information they were shown. Thematic analysis examined the use of EHI in different aspects of decision-making. People had used EHI in several ways and valued it for diverse reasons; e.g., to emphasize an issue's significance, suggest options or help them see they have a choice, help them consider how they might feel after making particular choices, and reassure them they are not alone/abnormal. Some of these reasons reflected the distinctive nature of EHI compared to more generalized, “factual” information, indicating that EHI seems to have a unique role in supporting decision-making. Some participants assessed EHI critically, and most appeared cautious and selective about its use; e.g., due to its potential inaccuracy. We argue that it is important to consider the implications of EHI for different stages of decision-making and that EHI can support good-quality decision-making if presented carefully.
Self-Identity, Gender, and Experiences of Coping After Stroke: A Narrative Analysis of Stroke Survivors' Perspectives
Emma F. France
University of Stirling
Clare Dow
University of Stirling
Kate Hunt
University of Glasgow
Chronic illness can disturb an individual's social roles and identity and can lead to “biographical disruption.” The impact of stroke on an individual's self-identity has not been widely researched, despite being a common, disabling chronic illness. Furthermore, the experience of illness may be gendered, yet little research systematically compares men's and women's experiences of how chronic illness (stroke in particular) impacts on self-identity. Our aim is to systematically compare the impact of stroke on men's and women's (re)constructions of their identity, and whether/how the use of different narrative “genres” varies by gender. A diverse, purposive, U.K. sample of 21 female and 25 male stroke survivors aged 29 to 93 was recruited and interviewed using a narrative approach between 2006 and 2007. Transcripts are being analysed using thematic and narrative analysis informed by a social interactionist perspective as we are interested in examining the ways in which men and women “do health” and “do gender” as they talk about life after stroke. A holistic narrative analysis method is adopted which identifies narrative “genres” including: restitution, chaos, quest, heroic, tragic, comic, and ironic genres. Ongoing analysis compares the extent to which men and women draw on each of these narrative genres to make sense of their lives and identities. To our knowledge, a systematic comparison of narrative genres used by chronically ill men and women is a new approach in chronic illness and gender research, and extends previous work on how “doing health” is a form of “doing gender.”
Speaking Up, Being Heard: RN Views of Workplace Communication
Maryanne Garon
California State University, Fullerton
Debra Balise
Kaiser Permanente, LAMC
Catherine Solorzano
California State University Fullerton
Nurses are central to patient care and patient safety in hospitals. Their ability to speak up and be heard impacts patient safety. However, this continues to be a problematic area for nurses. Multiple factors influence communication in health care, including hierarchical structures, gender differences, and implicit assumptions about roles of physicians and nurses. This qualitative study explored nurses' perceptions of their own ability to speak up and be heard, and of communication within their workplaces. The study utilized a qualitative approach, consisting of seven focus group interviews of 33 staff nurses and nursing managers from a variety of work settings in the western United States. Data was analyzed using a thematic content analysis method. From analysis, data fell into the organizational categories of internal and external influences on speaking up, how the message was transmitted and received, and consequences of speaking up. There was an overarching theme of a disconnect in understanding between managers and staff. It is anticipated that findings from the study may increase understanding of nurses' views of being able to speak out and be heard within health care settings. This is a highly important topic, in view of the ongoing shortage of nurses and the emphasis on developing positive work environment for nurses. This research was supported by a CSU State Special Fund Mini-Grant.
Waiting for the Pandemic: Theater, Embodiment, and Knowledge Generation
Rebecca Godderis
Wilfrid Laurier University
Katherine Rossiter
Wilfrid Laurier University
This presentation will explore the use of theater as a method of data generation within the context of contemporary bioethics research. Specifically, we will describe a project designed to explore ethical issues inherent in pandemic influenza planning and preparedness. Emerging from a research project called the Canadian Program of Research on Ethics in a Pandemic (CanPREP) at the University of Toronto's Joint Centre for Bioethics, our study involved working with undergraduate students to create a research-based play about significant ethical dilemmas in pandemic planning and response. Empirical examples informing this play were drawn from contemporary and historical data collected for the project. Although the original goal of this project was to use theater to translate and disseminate existing data, early work with students revealed that their lived experiences of the recent H1N1 pandemic were a valuable source of information and insight for this project. Thus, an unexpected methodological finding of this study surfaced as we relied on theatrical techniques such as improvisation for knowledge generation as opposed to knowledge translation. In this presentation we will describe the project, and specifically will focus on a technique called embodied focus groups that we developed throughout the duration of our work with students. The development of embodied focus groups as a methodology marks a particularly fruitful marriage between social scientific and theatrical practice as this approach captures a level of complexity that is not available through conversation alone.
The Use of ARV and Quality of Life: An African Study
Minrie Greeff
North-West University
Susan Wright
Tshwane University of Technology
Eva Manyedi
North-West University
S. Shaibu
University of Botswana
Mabedi Kgositau
University of Botswana
Winnie Chilemba
Kamuzu College of Nursing, University of Malawi
Angela Chimwaza
Kamuzu College of Nursing, University of Malawi
Lucy Kululanga
Kamuzu College of Nursing, University of Malawi
Lignet Chepuka
Kamuzu College of Nursing, University of Malawi
The main aim of antiretroviral therapy is to delay or prevent the progression to AIDS and death. Both nonadherence and side effects will have an influence on the person's quality of life. The relationship between quality of life and ARV has mostly been studied using quantitative methodologies. Most of the scales are more focused on a Western perspective. Sub-Saharan Africa has the highest incidence of HIV and AIDS, however very little literature on the use of ARV and quality of life in Africa is available. The aims of the study were to (a) explore and describe the experience of their quality of life by PLHA in Africa since being on ARV, (b) quantitatively test the quality of life of PLHA, and (c) compare the findings from both these investigations to evaluate the appropriateness of the HAT-QoL within the African context. A mixed method triangulation design was used combining the findings of the quantitative measurements and the qualitative findings from in-depth interviews with PLHA experiences of quality of life since being on ARV. The study was conducted in three African countries (South Africa, Malawi, and Botswana). Permission and ethical approval to conduct the study was obtained. A purposive voluntary sample was used. PLHA were mainly recruited through community-based HIV and AIDS organizations and health clinics. Data analysis of the interviews is being done by means of open coding and the quantitative data using the SPSS program. Recommendations will focus on changing the questionnaire should the findings not reflect the African context.
Looking Through Different Lenses: Case Study Research of a U.K. Mental Health Integrated Care Pathway
Julie Hall
University of Nottingham & Nottinghamshire Healthcare NHS Trust
The use of integrated care pathways (ICPs) within psychiatric settings has gathered pace internationally while attracting a mixed and inconclusive commentary. This research, funded by the U.K. Social and Economic Research Council, was designed acknowledging the lack of robust evidence about their effect on mental health care. The aim being to systematically determine how and to what effect an integrated care pathway can be used to manage mental health care. A case study research methodology has been used to study a pathway used in acute inpatient care on 6 wards in a UK mental health NHS Trust over a 3-year period. The findings shared in this paper were reached using data collected from semistructured interviews with health care professionals, focus groups with service users and carers, documentary analysis of health records, and datasets of hospital episode and performance information. Analysis of the data reveals accounts of the how the pathway has been used in day to day practice and how this varies by geography and professional group. There are critiques about integrated working and individualized care, and the impact of the pathway on these. The accounts given by service users and carers tell of contrasting perspectives about involvement and choice, and the content of their care while on the care pathway. Additional dimensions are added by quantitative data revealing the extent to which the care pathway was implemented across the 6 wards, and datasets of hospital episode and performance information consider the impact upon the achievement of 7 day follow-up and readmission rates. The application of complexity theory as an explanatory framework, suggests that mental health ICPs need to reflect the relationships between stakeholders, variability of illness, and individual ways of living if they are to provide a framework for managing care in the future that accords with the needs of people using mental health services.
Empowering Stroke Survivors Through Action Research
Shannon Hebblethwaite
Concordia University
Lynn Curley
Grey Bruce Health Services
Person-centered care and empowerment have received significant emphasis in health care. Individuals with chronic health conditions such as stroke often experience decreased self-control when they cannot actively participate in their care. Disempowerment often results, contributing to depression and decreased self-esteem. Person-centered care attempts to address these challenges by emphasizing the person's strengths and continued capabilities. Community-based agencies appear to be optimally positioned to adopt a more person-centered approach to caring for individuals with chronic conditions. The current study is a community-based action research project, conducted in collaboration with stroke survivors and a recreation therapist who is part of a community stroke rehabilitation team (CSRT). This CSRT provides support to stroke survivors in the community through a multidisciplinary heath care team. Therapeutic recreation is a unique allied health profession that has been included on the team. The role of the recreation therapist is to work with stroke survivors to provide individualized leisure assessment, collaboratively develop an individual recreation plan, and assist the stroke survivors to engage in recreation as a means of addressing individualized goals and objectives (e.g., increasing physical mobility, enhancing self-esteem, decreasing social isolation). By engaging the recreation therapist and the stroke survivors in the action research project, they have provided an in-depth explanation of the experience of being a stroke survivor. They have experienced increased empowerment and have become active participants in advocating for the needs of stroke survivors and educating other stroke survivors about the important role of recreation therapy in the recovery process.
Does the FAMCHAT Tool Enhance the Ethnocultural Dimensions of Nursing Assessment at the Royal Alexandra Hospital?
Gina Higginbottom
University of Alberta
Solina Richter
University of Alberta
Susan Young
Royal Alexandra Hospital
Lucenia Ortiz
Royal Alexandra Hospital
Stella Callender
Royal Alexandra Hospital
Joan Forgeron
Royal Alexandra Hospital
Michele Boyce
Royal Alexandra Hospital
In 2006, Edmonton's population totaled 1 million, with 189,775 people identifying themselves as foreign born. The visible minority group totaled 174,729 (17%) largely being of Chinese, South Asian, and Filipino origin. In 2006, interpretation services at the Royal Alexandra Hospital (RAH) responded to 849 requests representing 33 languages. Without culturally appropriate care delivery, a negative trajectory of events can occur ranging from simple miscommunication to life-threatening incidents. After critical literature review and research evaluation, the FamCHAT assessment tool was designated as highly pertinent and transferable to acute/hospital settings. Our research question was: Does the FamCHAT enhance the ethnocultural dimensions of nursing assessment at the RAH? A descriptive case study design was utilized consisting of: interviews with unit managers, completion by three unit nurses of the FamCHAT for every patient admitted during a 3-month period, and three focus groups with nursing staff from each unit following implementation. Fifty two forms were completed. Qualitative data were stored, managed, classified, and ordered with the aid of Atlas/ti and using Roper and Shapira's (2000) analysis framework which includes coding for descriptive labels, sorting for patterns, identification of outliers or negative cases, generalizing, constructs and theories, memoing, and reflective remarks. A written narrative was then constructed. Preliminary findings focus on five key dimensions: usefulness of the FamCHAT, cultural awareness of the participating nurses, barriers to utilizing the FamCHAT, patient perspectives, enhancements to nursing assessments, and cultural competence. In conclusion, participating nurses felt that the use of the FamCHAT tool did enhance nursing care assessments.
Consumer Acceptance and Adoption of eHealth
Brian Hillier
University of Regina
e-Health refers to health care that is provided, enabled, or enhanced through technology. It is a relatively new field in health care that utilizes advances in technology to extend and enhance health care delivery models while hopefully reducing costs of delivery. The advent and adoption of new technologies in communication and health care combined with the dissemination and comfort with these technologies has removed many of the barriers in terms of access to these technologies. As a result, a new dynamic is growing in the market place whereby consumers are researching health-related products ranging from drugs and disease to diet. This presentation seeks to further the understanding of consumer attitudes toward a range of possible e-Health services. By gaining this knowledge programs can be tailored and conveyed in manner which maximize perceived benefits and minimize perceived risks associated with these services, thereby increasing the likelihood of successful program adoption.
Developing a Theoretical Framework for Patients' Adherence to Antipsychotic Medications
Amy Hon
South West London and St George's (Mental Health) NHS Trust
Sylvie Marshall-Lucette
Kingston University & St George's University of London
Antipsychotic medication is central to the therapeutic regimen of patients with first-episode psychosis (FEP), in the United Kingdom. Although nonadherence with medication is found to be a common barrier to the effective treatment of FEP, health care professionals' understanding on how patients make decisions about adhering to antipsychotics seems to be lacking in the literature. This paper draws from the findings of a qualitative study, which aimed to gain greater insight of patients' antipsychotic medication-taking decisions and practices, from their own perspectives. A grounded theory approach was adopted to conduct in-depth, semistructured interviews with 12 patients, aged 18 to 35 years, treated with “Aripiprazole” in an “Early Intervention Service” in the south of England. The sample size was determined when theoretical saturation was reached in the core category. Interpretative and theoretical validity were ensured through member checking, peer review, and constant comparative method. The findings indicated that patients with FEP adjusted their medication-taking practices according to the effects of the illness or antipsychotics on their lives. A theoretical framework for the uptake or non-uptake of antipsychotic medication comprising three interrelated thematic categories was developed, and these were quality of life, experiential insight, and health status. This cyclical model facilitated a collaborative approach in medication-taking decisions between patients and health care professionals. The findings also have implications on shared decision-making in the prescribing practices as well as strategies to enhance adherence to antipsychotic medication.
A Model of Integration of Illness and Self-Management in Type 2 Diabetes
Åsa Hörnsten
Umeå University
Lena Jutterström
Umeå University
Åsa Audulv
Mid Sweden University
Berit Lundman
Umeå University
Aim: To describe the process of illness integration and self-management among people with type 2 diabetes.
Background: Integration of illness is a developmental process which refers to the emotional and existential aspects of being ill and concerns learning to live with a chronic illness. Integration of illness defines the process a person undergo from suspicion or information about a diagnose to a situation where the illness management is seen as a natural part of life. Despite the common use of terms such as illness integration and self-management, there exists little research that investigates how these concepts relate to one another.
Method: This paper reports a secondary analysis of an interview study among people diagnosed with type 2 diabetes, focusing on personal understandings of illness. The research approach was narrative interviews analyzed with qualitative content analysis.
Results: Illness integration in type 2 diabetes in general run parallel with the self-management process and a turning point is reached when people seem to easily adapt to the illness emotionally, existentially and in practice in daily life. Suspecting illness and/or being diagnosed, Understanding and explaining illness, and Negotiating illness and taking stands about self-management are important elements in this process, which is framed by the conditions Perceived seriousness and threat of disease, Intensity and nature of emotional response; Personal goals and expectations, and, lastly Perceived effects of self-management.
Conclusions: Illness integration and self-management processes develop simultaneously and may eventually end up in a turning point making self management easier in daily life.
H1N1 and Northern Canadian First Nation Communities: Community Concerns and Trust in Government Action
Cindy Jardine
University of Alberta
S. Michelle Driedger
University of Alberta
The global outbreak of H1N1 in the spring of 2009 had a pronounced impact on some remote northern communities in Canada. A study was conducted with the Garden Hill First Nation in Manitoba to determine how events associated with the outbreak may have affected trust in government action and to investigate specific community concerns. Focus groups of men and women within the vulnerable age range of 25 and 45 years were held in August 2009. In general, participants expressed a moderate degree of trust in the actions of public health agencies. Women were often more trusting then men, particularly with respect to believing that officials would communicate honestly and openly about the risks of the vaccine and in providing new information as it became available. Everyone rated their risk of contracting the H1N1 virus as high or very high. People expressed concerns about the challenges of living in a remote community, and felt that the well-being of their community was a low priority for public health officials. Many people felt they were unprepared (both in terms of information on self-protection and the availability of protective health supplies) for a potential second outbreak. Although H1N1 is a current worry, other issues such as living conditions were noted to be ongoing concerns. The results of this study highlight the need for government agencies to specifically consider the unique conditions and needs of Aboriginal peoples in their pandemic planning, and to situate pandemic risk response actions within the appropriate socio-economic and cultural contexts.
Snakes and Ladders: Tripartite Challenges of Translating, Transcribing, and Accuracy Checking Qualitative Interviews
H. Bindy Kaur Kang
University of British Columbia
Dataar Kaur Cheema
University of British Columbia
John L. Oliffe
University of British Columbia
Sunjiv K. Lit
University of British Columbia
Qualitative health research most often locates the qualitative interview as a key data collection technique. Ensuring that transcripts are “verbatim” accounts is well acknowledged by qualitative researchers as imperative to cleaning the data as well as accurately representing what was said. As global migration continues, conducting research with individuals who do not speak English is essential to including the health and illness experiences of all citizens. According to the 2006 Canadian Census, there were more than 6 million Canadians who reported speaking a mother tongue other than English or French. For countries such as Canada, where migration continues and diasporic communities have had a long historical presence, translation issues have become paramount in delivering essential services such as health care. To include non-English- and non-French-speaking Canadians in health research, translation of interview documents and data can be costly. Inadequate translation can have dramatic ethical consequences and negatively impact the outcomes of research studies. This presentation reveals challenges faced by the researchers when translating, transcribing, and accuracy checking qualitative interviews from Punjabi to English. Translation/transcription vignettes from two research programs involving British Columbians of Punjabi ancestry are presented including recruiting a bilingual translator, contending with challenging concepts/words, formalizing translation details, developing protocol on when to include key Punjabi phrases and words, and developing a translation dictionary. Recommendations are also presented as a means of increasing the trustworthiness of translated interview transcripts.
Rural Men, Sexual Identity, and Community
Michael Kennedy
Georgian College
The relationship between rurality and men's sexuality remain relatively unexplored. This study addresses the knowledge gap in the research literature by focusing on men who have sex with men in rural areas across Ontario, Canada. Involving a constructivist grounded theory methodology, interviews were conducted with 32 men across 28 geographic locales consisting of populations of less than 10,000 people. Men identified as gay, bisexual, queer/bisexual, or refused labels. These self-selected identifiers were then explored to determine how participants conceptualized and organized their sexual identities in relation to context. Participants held divergent management strategies that resulted in two general identity grouping: “natives” and “transplanters.”
Structural Violence and Vulnerability to HIV/AIDS: A Case Study of Brothel-Based Female Sex Workers in Delhi, India
Shamshad Khan
Simon Fraser University
In the past two decades or so, India's response to AIDS—despite its frequent denial of the problem until the late 1990s—has remained singularly tied to the CDC-led and WHO-World Bank-sponsored model of identifying and targeting “high-risk groups” whose “risk behavior” and “lifestyle” are seen as a major threat to their own health and to that of the “general population.” So far, more than a thousand behavior-centered Targeted interventions have been implemented among different marginalized groups and communities, and, over the next few years, the number of these interventions is expected to triple so as to cover all “high-risk groups”—especially “female sex workers,” “injecting drug users,” and “men who have sex with men”—up to the “saturation” level. Against this background, and based on a larger critical ethnographic field research done in India between 2003 and 2005, I focus on the social and institutional contexts of vulnerability to HIV. Especially, citing lived experiences of the brothel-based female sex workers in Delhi as case examples, I argue that their vulnerability to HIV and their inability to protect themselves and others were deeply embedded in the social structure, often beyond their control, and thus required a more broad-based policy intervention than a mere search for biomedical and behavioral models, the so-called “magic bullet.” This research seeks to fill the gap of critical literature on HIV/AIDS in the developing world and, by drawing our attention to “structural violence,” hopes to contribute to a more egalitarian public health and policy.
Developing a Culturally Specific Instrument on Complementary and Alternative Medicine Use Through Reminiscence
Cheryl Killion
Case Western Reserve University
Despite the proliferation in use of complementary and alternative medicine(CAM) in the general population, research and health care communities are challenged to know more about CAM use among older African Americans. Investigations of the self health management tactics of African Americans are essential because of the disproportionate high morbidity and mortality rates in this population. Although the benefits of CAM use are well documented, the safety and efficacy of an array of approaches are not known. Reported use of CAM among adults over 55 among African Americans is sparse and conflicting. This paper will provide an overview of the development of a culturally based instrument to be used to uncover CAM therapies, including indigenous health practices used by elderly, urban-dwelling African Americans, the conditions for which CAM practices are used, the rationale for using CAM, and barriers and facilitating factors in CAM use. Reminiscence was used as an approach to promote revelations of CAM use and other health practices. Group interviews, using reminiscence, yielded culturally distinct data and categories that were used for questionnaire construction.
Social Work Practices in Health Care Institutions Operating in Turkey
Emre Kol
Anadolu University
Social work mainly focuses on human beings and their welfare. However the history of social work dates back to the existence of humankind, the contemporary meaning of this profession was composed during the 19th century. As being one of the major branches of social work; medical social work practices begun at the beginning of the previous century. This presentation is consisting of three main parts. In the first part; fundamentals of social work and medical social work has been identified. The second part mainly focuses on generic social work approach and the theoretical foundations of this concept. The third part of this study includes an exploratory qualitative analysis which was conducted in order to compare the literature-based knowledge on social work with the social work practices conducted in the health care institutions located in Ankara and Eskioehir, Turkey. The empirical material of the study is generated through 8 semistructured interviews conducted with social workers working at the various hospitals. The findings of the study revealed that the social work practices are conducted in a reactive, ad hoc, problem-based manners. This situation can be related to the relatively low number of social workers working in Turkey and low level of awareness about the overall social work profession among public. The amount of publications related to the practice of medical social work in Turkey is relatively low. For this reason, larger studies both in terms of sample size and geographical scope should conducted in order to understand the full picture of this field.
The Process Toward Integration: A Psychosocial Process of Adjusting to Facial Disfigurement Following Surgical Treatment for Head and Neck or Eye Cancer
Hanne Konradsen
Gentofte University Hospital
Facial disfigurement, as a result of surgical cancer treatment is challenging. This grounded theory inspired longitudinal project followed these patients for one year postsurgery. A substantial theory of the process towards integrating disfigurement was outlined. When returning to everyday life the patients felt that their close relatives often failed to understand what living with disfigurement meant, but integrating disfigurement was not something one could do alone, and this became their main concern. The main concern was resolved through interactional integrating disfigurement which occurred in two stages, from being a disfigured person to becoming a person with a disfigurement. In stage1 the consequence of the patients' altered appearance became present, and as the facial disfigurement was so obvious and created a basis for first impressions, other people tended to change their behavior toward the disfigured person. In this stage there were two psychosocial subprocesses, noticing and dissociating. Responses from others were noticed and the emotions this created within the patient were noticed. Dissociating occurred through avoiding and through temporarily forgetting. There was a constant alternation between noticing and dissociating, in a fragile balance with the feeling of being a disfigured person, until it proceeded into the integration of the disfigurement, with the feeling of being a person with a disfigurement. The movement into stage 2 occurred through the subprocesses breaking the silence and integrating. Integrating though were not a stable position, outside events that impacted the patient into a vulnerable position could trigger the movement back into the first stage.
Lost in Translation? Methodological Messes and Lessons Learned Using Interpreters During Interviews With Injured Immigrant Workers
Agnieszka Kosny
Institute for Work & Health
Ellen MacEachen
Institue for Work & Health
In 2011 immigrant workers are expected to account for almost all net labor force growth. Yet many immigrants work in hazardous, precarious, low-waged jobs. We conducted a study examining new immigrant's experiences after a work injury. We explored workers' knowledge of their rights, factors impeding and facilitating the reporting of injuries and experiences workers had with health care providers, employers and the compensation system. We interviewed 14 service providers who worked with injured immigrants (health care providers, settlement workers, legal representatives, etc.) and 29 injured immigrant workers. Approximately half of the interviews were done with the help of interpreters. This presentation examines the benefits and pitfalls of using interpreters during the research process. The use of interpreters allowed us to interview participants with poor English language skills and those who were marginalized because of their immigration status. By including these participants we were able to better understand how barriers due to language affected injured workers. However, the use of interpreters during interviews also presented a number of methodological, analytic and administrative challenges. We discuss how confidentiality and rapport were affected by the use of interpreters and how comprehension problems developed. In our study all participants spoke some English and this presented unique challenges during translated interviews. Further, seemingly mundane administrative issues, such as interview set-up, transcription and data “read throughs,” had a significant bearing on data quality. We offer important suggestions for doing research with participants requiring interpretation.
Uncovering Tacit Knowledge in Public Health
Anita Kothari
The University of Western Ontario
Debbie Rudman
The University of Western Ontario
Maureen Dobbins
McMaster University
Michael Rouse
The University of Western Ontario
Shannon Sibbald
The University of Western Ontario
Nancy Edwards
University of Ottawa
Planning a public health initiative is both a science and an art. In the complex environment in which public health practitioners work, often under time constraints, where formal research literature is unavailable or uncertain, public health practitioners often draw upon ‘other forms’ of knowledge (e.g., tacit, or experiential, knowledge). Through use of focus groups and one-on-one interviews we aimed to gain a better understanding of how tacit knowledge is used to inform program initiatives in public health. This study was designed as a narrative inquiry, which is based on the assumption that we make sense of the world we live in by telling stories. Six public health units were purposively selected for maximum variation, based on geography and academic affiliation. Analysis revealed different ways in which tacit knowledge was used to plan the public health program or initiative, including discovering the opportunity, bringing a team together, and working out program details (such as partnering, funding). The findings of this study demonstrate that tacit knowledge is drawn upon, and embedded within, various stages of the process of program planning in public health. The results will be useful in guiding the development of future knowledge translation strategies for public health organizations and decision makers.
Walking the Borderland: Embracing Indigenous Methodologies in the Midst of Academia
Donna Kurtz
University of British Columbia Okanagan
de Sales Turner
Deakin University
Helen Cox
Deakin University
Jessie Nyberg
Explicitly defined research policies and the protocols of human ethics boards influence our ability to gain ethics approval as well as suggest how we will engage in data collection, undertake data analysis, advise participants of participation requirements, and disseminate our findings. In this paper our thesis is that institutional language requirements and procedures often conflict with Indigenous cultural protocols, values, and traditions, making the truthful description of how community based qualitative research will be undertaken difficult. This presentation shares a personal account of an Aboriginal researcher's journey of walking the borderlands between academic and Indigenous worldviews. Using Indigenous Methodologies (IM) to guide my doctoral research, honoring cultural traditions and protocols were integral in working with the community. The methodological research process evolved as stories were told and knowledge shared. In this study, Traditional Talking Circles were used to create a culturally safe environment for urban Aboriginal women to talk about their health care experiences and recommend strategies for change. Their insights helped to shape the direction of the research process. This fluid, nonlinearailty and unpredictability, common in IM, challenged the often unyielding university policies yet compelled the researcher to stay true to the methodology described within the ethics application while simultaneously respecting cultural protocols and traditions. The successes and challenges of embracing Indigenous Methodologies in the midst of academia without losing sight of respect, commitment, and accountability to Indigenous peoples are offered.
Using Qualitative Inquiry to Explore the Breast Cancer Experience of Chinese-Australian Women: Reflections on the Issues and Challenges of Data Collection and Analysis
Cannas Kwok
The University of Sydney
Kate White
The University of Sydney
As knowledge about the breast cancer experience of Chinese women in Australia is limited, our research team employed qualitative methods to obtain rich information. Focus group interviews were conducted with 23 Chinese-Australian women in Cantonese or Mandarin by the first author and two trilingual research assistants who shared the participant's culture and language. All three researchers had nursing backgrounds and were both bicultural and trilingual. The interviews were transcribed verbatim and translated into English by these three researchers using the back translation technique. Every interview was analysed by all researchers and translations were compared and discussed until congruence was reached. Analysis was by content analysis, and the second author, who is from a different cultural and linguistic background but has extensive nursing experience in Australia, reviewed the themes obtained from the data. Drawing on this experience, we aim to describe the lessons learnt about conducting cross-cultural and cross-linguistic research on a sensitive topic, specifically data collection and analysis. Communication skills training was very helpful for facilitating discussions on a sensitive topic, even for interviewers from the same cultural and linguistic background as the participants. Having multiple translators, although it posed significant time costs, helped provide data consistency. Another challenge was working in a cross-cultural and cross-linguistic team, as different team members viewed the themes differently. However, this also helped to reduce bias by ensuring that certain findings were not inappropriately labeled as culturally specific. These lessons have implications for planning cross-cultural and cross-linguistic qualitative research studies involving sensitive topics.
Women's Experiences During in Vitro Fertilization Leading to Maternal Embryo Attachment
Tammy Lampley
Cabarrus College of Health Sciences and University of Nevada Las Vegas
The American Psychological Association has identified the investigation of risk factors for negative psychosocial outcomes for women who confront infertility is required, as is documentation of the effectiveness of interventions designed to decrease psychological morbidity as a research priority. The purpose of this research was to understand the experiences of women who receive IVF following embryo transfer and prior to receiving the results of their first quantitative beta hCG pregnancy test; and to discover the meanings women ascribe to their non-implanted embryo(s) following embryo transfer and prior to knowing their first quantitative beta hCG result. The research question was: What are the lived experiences of women who receive in vitro fertilization during the period of time following embryo transfer and prior to knowing the outcome of their initial quantitative beta hCG pregnancy test? Van Manen's (1997) phenomenological method and Four Existential Lifeworlds were used to guide the interpretation and lead to the development of a model which illuminated the women's experiences. The analysis revealed Waiting was the overarching essential theme and how the women waited was revealed as eight sub-themes: Hope, Awareness, Doubt, Anxiety, Isolation, Vulnerability, Despair, and Anticipation. The long-term objectives of this study are to educate nurses and other health care professionals, and the women who experience IVF including the families who support them; and improve the level of health care received by this already vulnerable group of women who experience IVF. Implications for education, practice, and research are included in the presentation.
Access to Renal Transplantation
Kandace Landreneau
University of Texas
Purpose: Nursing research literature provides many studies and reviews regarding renal replacement therapies for patients with chronic kidney disease (CKD). The purpose of this study was to gather data through the use of interviews to explore and explain the perceptions of patients undergoing HD regarding their access to renal transplantation.
Rationale: Research highlights inconsistencies in how access to renal transplantation has been presented. The most significant issue was the lack of research focusing on access to renal tranplantation.
Methods: This exploratory, descriptive study used a phenomenological method. A convenient sample was recruited from one urban dialysis unit in a southern state of the United States. Saturation was achieved during the 8th interview, and the final sample number was 8 participants. Data collection consisted of audiotaped interviews, which were transcribed verbatim. The analysis was performed using Colaizzi's phenomenological technique.
Findings: Three themes emerged from analysis: (a) getting to transplant candidacy, (b) information, and (c) impact on life. Participants perceived they could be evaluated for a transplant. The predominant theme reflected that most HD participants had knowledge about access to renal transplantation even though this included much misinformation. Impact on life was also perceived as important by these patients.
Implications: The areas of access to renal transplant, education about current renal transplantation, and other dynamics that impact their access, need to be studied. Inquiry needs to remain treatment specific and include all current and accurate education about renal transplantation.
Being Fully Present: A Phenomenological Study of Psychologists' Experiences of Compassion Fatigue
Denise Larsen
University of Alberta
Wendy Austin
University of Alberta
The impact of compassion fatigue is described as disengagement or lack of empathy by caregiving professionals (Austin et al., 2009). Taking a relational ethics approach, engagement between client and psychologist is a moral connection that creates the space for ethical practice. However, little research has been conducted on the experience of compassion fatigue, often blurring its description with burnout, secondary traumatization, and moral distress. Part of a multidisciplinary study, we present results of a phenomenological study of compassion fatigue among nine Canadian psychologists. At the heart of the compassion fatigue experience appear to be challenges in holding one's personal/professional boundaries. Precursors to compassion fatigue included high demands on emotional energy at home, heavy emotional investment in particular outcomes by clients, and excessive workloads within seemingly unresponsive/uncaring institutional contexts. Participants struggled with frustration and anger with particular clients and overwhelming work contexts. The conflict between understanding themselves as compassionate individuals while witnessing their own anger threatened participants' professional and personal identities. Feeling engulfed and unhappy with “negative” reactions toward some clients, they worried about their capacity to provide competent care. Concerned by the impact of compassion fatigue, participants described attempts to support healthy personal and professional boundaries.
Newcomer Health Care Experiences and Needs in the Context of Settlement: An Exploration of Patients and Families Accessing The Hospital for Sick Children
Jennifer Levy
The Hospital for Sick Children
Jahanara Khatun
The Hospital for Sick Children
Atyeh Hamedani
The Hospital for Sick Children
An increasing proportion of patients at The Hospital for Sick Children are either newcomers to Canada—immigrants, refugees, or refugee claimants—or the children of newcomers. This project sought to understand the experiences of newcomers with a sick child and accessing care at an acute, pediatric hospital. Evidence on health disparities and the social determinants of health indicate that newcomers have poorer access to appropriate, quality health care, and worse health outcomes. Moreover, a family's already stretched resources may be further undermined when a child is sick. Through qualitative interviews with newcomer parents and tailored interviews with children over age 7, we explored settlement experience, social and financial support, health beliefs, health care seeking behavior, and perspectives on health care. Interviews were conducted in participants' preferred language of communication, with the assistance of an interpreter when required. We also reviewed participants' charts to examine the use of interpreter services and referral to supportive services. We identified particular points of vulnerability, including challenges in settlement, financial constraints, limited health literacy and self-advocacy, confusion navigating the health care and social services sectors, and limited emotional support. The findings suggest that newcomers require more specialized and intensive services for optimal health care. To respond to the needs of newcomers, the Hospital for Sick Children's New Immigrant Support Network has piloted an Intensive Case Management Program, which intends to fill the identified gaps.
Realist Evaluation: Its Role and Use in Clinical Program Evaluation
Paul Linsley
The University of Lincoln
This presentation will outline the new and emerging realist paradigm in evaluation research and its use in evaluating clinical programs of activity, drawing on the presenters' own research and study. The aim of realistic evaluation is to identify the causal mechanisms and the conditions under which certain outcomes are realized within a given intervention or program; or, put more concisely, what worked for whom in what circumstances? In this way, realistic evaluation not only addresses the effects of a program or intervention but also its inner workings or mechanisms. Mechanisms do not reside in the events or the behaviors of particular objects, variables, or individuals, but in the social relations and organizational structures, which constitute open systems. In the realist worldview, clinical activity and outcomes cannot be explained in isolation; rather, they can only be explained in the sense of a mechanism that is introduced to effect change in a constellation of other mechanisms and structures, embedded in the context of pre-existing historical, economic, cultural, social, and other conditions. In this way, effectiveness of the program or intervention is apprehended with an explanation of why the outcomes developed as they did, and how the program was able to react to the other underlying mechanisms, and in what contexts. This analysis provides not only evidence of effectiveness but also an explanation that helps to develop and to improve both the content and the targeting of future programs and clinical activity.
A Mixed-Method Study of Mental Illness, Compulsory Treatment, and Self-Stigma
James Livingston
Forensic Psychiatric Services Commission, BC Mental Health & Addiction Services
A small proportion of people with mental illness use community mental health services involuntarily, either as a consequence of civil commitment or criminal justice sanctions. Compulsory community treatment is intended to protect the welfare and safety of people with mental illness; however, it may also reinforce stereotypes about the mental health system and about people who use the services. Self-stigma refers to a complex, subjective process—embedded within a socio-cultural context—characterized by negative feelings, maladaptive behavior, identity transformation, and adverse outcomes resulting from an individual's experience, perception, and anticipation of adverse social reactions on the basis of their mental illness. This presentation describes a prospective, mixed method (QUAN+qual), longitudinal study that examined the experiences and consequences of self-stigma for 91 people with severe mental illness who receive compulsory community treatment in British Columbia, Canada. Qualitative data were analyzed using an inductive thematic analytic framework to identify predominant themes and recurring patterns. The following six primary themes describe participants' qualitative narratives regarding self-stigma: (a) Feeling/being knocked down, (b) Passing-managing-overcoming, (c) Public (mis)understanding, (d) Social identity/ location, (e) Social disadvantage, and (f) Compulsory wellness. In addition to discussing these themes, this presentation will highlight how the supplemental qualitative component of this quantitatively driven mixed method study allowed for both an enriched exploration of the self-stigma construct and an enhanced interpretation of the unexpected quantitative patterns and trends that were uncovered.
Cancer: A Study of Representations in Patients and Primary Caregivers
Jose Alfredo Lopez Huerta
Universidad Autónoma de San Luís Potosí
Agustín Zárate
Universidad Autónoma de San Luís Potosí
The social studies related with health and disease is a relevant study area. The purpose of this research was to identify the cancer representation as well as the social construction representation, getting the require information according to the qualitative approach. To get this information we focused on the next techniques: Semistandardized interview and nonparticipant observation. We interviewed 18 primary caregivers and 13 patients and we did nonparticipant observation for 25 days spread over the months of January, February, and August 2008; observations had an average duration of 3 hours per day, were used for recording field notes and recorded conversations in the waiting room, and were transcribed for analysis. We found that definitely there are social identity criteria in this group that justify the use of social representations theory even though there is no usual contact. We mainly identify emancipated representations. We also identify that the information that is considered to make the representation comes from people with strong relationships. In general the representation is based on (a) spiritual and religious anchoring and (b) the illness fatality objectify; therefore the medication is good and the illness is bad. According to the above information the causal explication of cancer is mainly religious. The representation changes in a positive way based on the improvement of physical health although the central core of the disease stays the incurability disease because people are afraid of a relapse.
Unraveling the Complexities Leading to Health Inequities: A Critical Ethnography
Kawabata Makie
Japanese Red Cross Kyushu International College of Nursing
Denise Gastaldo
Lawrence S. Bloomberg Faculty of Nursing
Mechanisms that explain how social inequalities lead to poorer health are complex, and employing a critical perspective has proved useful in examining the experiences of vulnerable populations. This study explored day laborers' pathways to health inequities through a critical examination of their social contexts and cultural behaviors in order to understand how social structures impact the process of creating health inequities. Critical ethnography was conducted in a day laborer district in Japan. Data from participant observations, interviews with day laborers and others, and relevant documents were analyzed. We examined the dominant understandings of day laborers' social contexts and their cultural behaviors, reconstructed new perspectives, and identified how the economic, political, and cultural structures affect their experiences. Day laborers have little control over their working and employment conditions, including exploitative wages and disadvantageous work contracts. Their standards of living are far below government established minimums. They typically live in small rooms in transient hotels in a socially segregated area. The seemingly carefree lifestyles suggested by their temporary labor and impermanent living arrangements, which do much to create a public image of day laborers as incompetent, lazy and lacking in responsibility, does not reflect personal choice. It is a lifestyle forced on them by their circumstances and lack of financial and social resources essential for them to turn their lives around. Taking a critical view of current dominant discourses can help researchers provide plausible evidence to policy makers to develop more effective policy to reduce health inequities in vulnerable populations.
Nurse Family Members: “The Call to Care” for Our Own Relatives
Patricia McClunie-Trust
Waikato Institute of Technology
This presentation explores “the call to care” as a central theme that emerged from my doctoral research on nurses caring for their own relatives in palliative care. The research explored the challenges of living within families that make unique demands on their nurse family members. The methodological approach was informed by Foucault's ideas about how people strive to become ethical subjects through self forming activities undertaken on the self in order to care for the self and others. It was conducted as a qualitative study with six female registered nurse participants from different geographical areas of New Zealand, who were interviewed about their experience of caring for their dying relative. Nurses are called to care because they are present within their own families with knowledge and skills that influence how end of life care is experienced by a relative. Caring discourse positions nurses with responsibilities to their own; responsibilities that require sensitivity in knowing how to negotiate the relational spaces that constitute relationships with other family members and health professionals. Family discourse calls nurse family members to care as daughters, wives, or mothers within normative understandings about the obligations that families have to care for their ill or dependent members. Expertise, in knowing as a nurse, positions nurse family members as interpreters of information and observers who watch over the ill person's clinical care. This expertise, which becomes visible in the exercise of professional authority, challenges the normative frameworks that classify and demarcate professional and lay roles in palliative care.
Function and Influences, But Not as We Know It: Personal Accounts Across Acute Low Back Pain Experiences
Carol McCrum
University of Brighton
The “how” and “why” in recovery from acute low back pain, or the development of chronic pain and disability appear complex and multifactorial, and remain poorly understood. From current research, there is little evidence associating pathology or physical findings with outcome. Psychosocial factors are considered to play a major role in the development of persistent problems, yet success in intervention remains a challenge. This study has explored interview and written accounts of acute low back pain across experiences of recovery and persistent problems to broaden understandings for practice and research. A narrative-discursive perspective has found a complex relationship of social functions and influences shaping experiences portrayed and the accounts provided. Accounts were functioning to characterize the nature and significance of experiences while concurrently managing issues of information credibility, personal character and integrity, and personal accountability. An orientation to wider sociocultural considerations and situated contextual influences also shaped the experiences portrayed and the way accounts were provided. Finally, an interrelated influence was “time,” as a context and a feature of relevance within acute low back pain experiences. Reflecting other health professions, communication and interaction are integral to all aspects of physiotherapy practice, including intervention, research strategies, and evidence development. The findings suggest the importance of recognizing the complexity of functions and influences shaping personal experiences and the accounts provided in the context of acute low back pain. The research offers insights and alternative perspectives on assumptions underpinning interpretations within current practice and research, which also extend as considerations within other health problem contexts.
The Lived Experience of the Preceptor in Evaluating Undergraduate Nurses' Clinical Competence
Louise McDonnell
Trinity College Dublin
The role of the preceptor in undergraduate nurse education is summarized as one of providing supervision, teaching, and feedback as well as the clinical evaluation of student nurses' performance (An Bord Altranais 2003). Within the Irish nursing context the evaluation of students' clinical competence is central to the preceptorship role since the introduction of the degree program in 2002. Internationally, the literature demonstrates the complexity of clinical competence-based evaluation. However, from an Irish perspective there is a dearth of research exploring the experience of the preceptor in the process of clinical competence evaluation. The aim of this presentation is to report the findings of a study exploring the preceptor's lived experience in evaluating undergraduate students' clinical competence. A hermeneutic phenomenological approach was employed to interpret the meaning of the research phenomenon. A purposeful sample of ten preceptors participated. Open-ended interviews were used to facilitate data collection. Colaizzi's,(1978) seven stage process framework guided the data analysis. The central theme in the interpretation of the lived experience was “teaching and evaluating clinical competencies.” Four related themes emerged which were “knowledge and learning,” “questioning competence,” “competing demands,” and “confidence in ability.” The interpretation of the lived experience of the preceptors was considered in the context of the available literature addressing this area and a number of implications for nurse education were identified. The findings illuminate the meaning of being a preceptor in evaluating students' clinical competence, and the necessity to value and support the formal role of the preceptor.
Stigma Against HIV/AIDS Among Tuberculosis Patients in Ladakh Region of J&K, India
Sonal Mobar
Indian Institute of Technology Kanpur (IITK)
Ladakh, a district of Jammu and Kashmir state, has fewer resources and has not experienced the fruits of latest technological developments. It has been chosen for research because of its remoteness, extreme climatic conditions (up to –30 degreesin winters), religious importance (Buddhism), high population mobility (students, tourists) and the perception that it is a No AIDS Zone. The place has only one district hospital; no proper testing kits are available for HIV/AIDS and TB, and hence denial of acceptance of these diseases. Since HIV positive people are highly susceptible to tuberculosis, the study was conducted to explore tuberculosis patients' understanding of HIV and their attitude towards its testing and treatment. Quantitative and ethnographic methods were used to study awareness of health facilities, health care utilization behavior, testing and treatment of tuberculosis, and perception of HIV. Quantitative data were collected from Leh and adjoining areas, from 166 patients of tuberculosis (aged 18–50 years), registered at SNM hospital for DOTS program during April 2008 to July 2009. A semistructured interview schedule was administered which included a culturally sensitive stigma measurement scale. Qualitative interviews were conducted on doctors, paramedical staff, NGO volunteers, administrators, employees at DOTS center, and religious priests. Factor analysis and regression analysis shows that stigma is a cultural issue and is very little affected by socioeconomic and demographic variables. Development of innovative health strategies in the region through community based support structure would be helpful in combating the present situation.
Growing up and Growing Older With a Physical Impairment: The Paradox of Normalization Through Rehabilitation
Laura Moll
University of Toronto
Cheryl Cott
University of Toronto
The purpose of this presentation is to describe key preliminary findings from a study on growing up and growing older with a lifelong physical impairment. A qualitative methodology was utilized consisting of narrative inquiry informed by the life course perspective. The life course perspective is a dynamic approach that encompasses multiple theories including sociology, human development, and aging highlighting how social, historical, and cultural contexts shape peoples lives. Narratives are storied ways of knowing and communicating that people use to organize events in their lives and make sense out of their experiences. Nine community-dwelling individuals (3 men; 6 women), aged 26 to 70 years, with mild to severe cerebral palsy were recruited using a combination of purposive and snowball sampling. Multiple (3–4), in-depth interviews were completed with each participant to coconstruct their life stories. The data analysis was iterative. NVivo 8 was used to organize the data supporting a systematic caparison of emerging themes and categories, as well as the central plot that weaves the participants' experiences together. “Normalization” emerged as a key recurring theme in the participants' life stories. The focus of rehabilitation on “normalizing” movement, particularly walking, during childhood can lead to social psychological challenges as well as problems later in the life course as people encounter increasing fatigue and decreasing functional abilities but no longer have access to rehabilitation services. The impact of attempts to normalize participants' physical performance throughout the rehabilitation process during childhood and adolescence on experience in adulthood will be highlighted.
A Qualitative Study of Stigma Among People With a Diagnosis of Mental Illness in Iran
Alireza Momeni
University of Rehabilitation Sciences and Social Welfare, Tehran, Iran
Soroor Parvizy
Iran University of Medical Sciences, Tehran, Iran
Stigma is identified as a multidimensional phenomenon and depends on social, cultural, and ideological context. The most studies about mental illness stigma derive from Western countries, and little is known in Asian countries. The aim of this study was to explore the experiences of stigma in people with a diagnosis of mental illness and their coping strategies in Iran. In this grounded theory study 12 participants, including 11 males and 1 female, ages 22 to 63, and in three psychiatric centers in Tehran, Iran, were recruited through purposive sampling. Participants included people with a diagnosis of mental illness and mental health professionals. Semistructured interviews were conducted to collect data until saturation. Data were analyzed using the constant comparative method. The results of this study revealed the following categories: Social factors influencing stigma, Social identity, Facilitators, Emotional reactions, Secrecy and avoidance, and Consequences. The findings showed mental illness stigma can threaten social identity of individuals, so managing social identity was the basic social process people with a diagnosis of mental illness used to cope with the stigma. The finding can be important in deepening our understanding of sociocultural processes underlying stigma, and therefore we can create new and effective strategies to hasten its elimination.
“Insiders” and “Outsiders” in Hospital Ethnography: Issues in Entrée and Quality of Data
Benson A. Mulemi
University of Amsterdam
Participant observation is a hallmark of classical ethnography. Many anthropologists value “going or being native,” as an outstanding quality of ethnography. The basic premise for this perception is that being an insider, or acting as one, facilitates adequate grasp and representation of emic perspectives of events and people's experiences. Research and discourse on hospital ethnography highlight both limitations to and advantages of true or fake insiders in medical settings. The opposite position of an “outsider” is taken by ethnographers who are foreign to either a local ethnic culture or medical subculture. Most hospital ethnographers fall in either category and only a few are trained in both anthropology and medical sciences. The statuses of “native” or “stranger” in medical settings affect access to fieldwork sites and different actors' lifeworlds. These, in turn, affect the quality of data and ethical considerations in hospital ethnography. This article examines the implications of outsider and insider positions for hospital ethnography. It argues that either status does not necessarily mean advantage or disadvantage. Nevertheless, both statuses of insider and outsider require the obligation to be aware of the associated biases.
Good or Bad Mother
Lee Murray
University of Saskatchewan
The normative discourse of good mothering is everywhere. However, the socially constructed texts do not fit with the aims, demands, and activities of mothering. The expectations do not fit with the experience. What does the dominant discourse say about mothering and the expectations for the practice of mothering? How then does the discourse of mothering affect the practice of mothering and our reluctance to tell our stories about what mothering is “really like”? The paper will challenge the normative discourse of mothering using autoethnographic stories to examine and make sense of my experiences as a mother. The stories represent my voice, emotions, and practice of mothering. Multiple meanings are then constructed through the emotionality and subjectivity of me the writer and you the reader/listener. My stories provide understanding and interpretation at an individual and societal level.
Preceptor Education: A World of Possibilities Through e-Learning Technology
Florence Myrick
University of Alberta
Wendy Caplan
University of Alberta
Jayne Smitten
University of Alberta
Kerry Rusk
University of Alberta
Preceptorship is designed to socialize students into their role as professionals, promote their confidence and competence in the clinical/community setting and foster the use of critical thinking. In today's global context, opportunities exist for local, rural, national, and international student placements which provide exciting and mutually rewarding preceptorship experiences. Presently, however, ongoing support of the teaching/learning needs of our local and distant preceptors warrants advancement. Despite the recognized value of those involved in preceptorship, little progress has been made regarding the development of an infrastructure that effectively supports their ongoing education. This project, which was piloted from October 2008 through to and including February 2009, leveraged our established research and teaching experience in preceptorship with technologies that allowed us to create an accessible and engaging e-learning space. This e-learning space is designed to support preceptors in a seamless fashion, improve the quality of the student preceptorship experience and enhance professional teaching capacity. On completion of the project, participants were surveyed and individually interviewed. Analysis of the data reveals that participants found this program not only to be informative and supportive but also to be highly valued. The knowledge derived from the findings of this study can serve to (a) further enrich the substantive nature and infrastructure of online preceptor education and (b) contribute to the clarification of best practices related to preceptor support, facilitation, and ongoing professional development with a view to enhancing the preceptorship experience.
Preceptorship and Practical Wisdom: A Process of Engaging in Authentic Nursing Practice
Florence Myrick
University of Alberta
Olive Yonge
University of Alberta
Diane Billay
University of Alberta
Nursing students are taught by preceptors who socialize them into nursing through role modeling and questioning, who create a climate for learning and who impart knowledge or a way of knowing about nursing. Previously it was thought that the enhancement of critical thinking together with the development of specialized knowledge was the essential core to knowledge acquisition. In two recent studies, however, the researchers became increasingly aware of the fact that while critical thinking is pivotal to effective problem solving and decision-making, responsible action and competent practice requires another determinant, one that encompasses but is not limited to critical thinking. That determinant is practical wisdom or the knowledge involved in the performance of actions intended to generate good for fellow human beings. It is the knowledge that compels nurses to engage in appropriate decision-making while integrating the rational component of deliberation, a process that results in a more thoughtful appreciation for the particular or contextual human/patient situation. The objectives of this study were threefold: (a) to explore the process that fosters practical wisdom in the practice setting, (b) to examine the dynamic of practical wisdom and how it is represented in the preceptor student relationship, and (c) to generate a substantive theory that can be used to understand the phenomenon of practical wisdom within the contextual reality of the preceptorship experience A grounded theory method was used to conduct this study. Data reveal a process the researchers identify as “engaging in authentic nursing practice.” Findings will be discussed.
Transitioning From the Nurse Practitioner Student to the New Nurse Practitioner
Florence Myrick
University of Alberta
Olive Yonge
University of Alberta
Diane Billay
University of Alberta
Over the past several decades there has been a concerted effort globally to reform health care. Within the context of that reform the role of nurse practitioner in primary care has been reintroduced into areas traditionally considered to be under the purview of the medical profession. Because of this renewed interest in the nurse practitioner role, educational programs have been encouraged to specifically support this role. Preceptorship is a key teaching/learning approach used by nursing programs in the education of nurse practitioner students. Currently, the literature is replete with research addressing various aspects of the preceptorship experience. To date, no studies have been conducted to examine the process used to promote the education of nurse practitioner students in the preceptorship experience. Because preceptorship is an optimal method used by faculty to teach nurse practitioner students it is of particular importance to determine how preceptorship actually prepares nurse practitioners for their role in professional nursing practice. Four main purposes of this research study were to (a) examine the process involved in the acquisition of knowledge by NP students throughout the preceptorship experience, (b) explore how nurse practitioner preceptors impart their knowledge throughout the teaching/learning process, and (c) determine how faculty contribute to the nurse practitioner preceptorship experience. A Glaserian grounded theory method is used to guide this research. The findings indicate that the core variable represents the following: Negotiating the Liminal Space in the Nurse Practitioner Student Preceptorship Experience. With this in mind, findings will be discussed accordingly.
Methodological Shortcomings Following a Systematic Review of Recent Qualitative Research Into Chronic Low Back Pain
Benjamin J. Newton
Birmingham City University
Zuzana Rothlingova
Dudley Primary Care Trust
Robin Gutteridge
University of Wolverhampton
Jon H. Raphael
Birmingham City University
Chronic low back pain (CLBP) is an extremely common condition, with some estimating a prevalence of 44% in a 12-month period (Picavet & Schouten, 2003). To date, however, there has been no systematic review of the literature concerning the patient experience of CLBP. This review sought to identify recent qualitative research published in the past 5 years, to identify common themes emerging from the patient experience and to offer a methodological critique of the research quality. A search of eight databases (AMED, BNI, CINAHL, EMBASE, IBSS, MEDLINE, PsycARTICLES and PsycINFO) yielded 1,482 abstracts. The abstracts were independently reviewed by two researchers, and a total of 38 full-text papers were obtained for review. The researchers independently read these papers and assessed whether they continued to meet the inclusion criteria. Those papers that did were independently critiqued using a modified version of the Critical Appraisal Skills Programme for qualitative research. The reviewers discussed the critique of each paper, and through a process of agreement a final critique of each paper emerged. Preliminary analysis indicates a number of methodological shortcomings. The choice of theoretical framework in which the research was conducted often lacked substantial justification. Moreover reflexivity, a major aspect of qualitative research, was often not considered or discussed. However many articles did postulate how their research might affect clinical practice. The shortcomings highlighted by this review need to be addressed in future research studies so that qualitative research is seen as both rigorous and credible in the academic and clinical community.
Perspectives on Establishing Relationships Between Foreign Patients and Nurses in Japan
Chiharu Nonaka
National Center for Global Health and Medicine
Machiko Higuchi
National College of Nursing, Japan
Japanese nurses face difficulties developing relationships with foreign patients when attempting to provide sufficient nursing care. The purpose of this qualitative study was to clarify experiences of Japanese nurses who have cared for hospitalized foreign patients and examine the process of establishing relationships using grounded theory methodology. Semistructured interviews were conducted with 11 Japanese registered nurses. Four major components were revealed: intent to provide appropriate nursing care to foreign patients, intent to understand the diverse cultural backgrounds of foreign patients from the perspective of one's own culture, indecision regarding relationships with foreign patients, and compromises between nurses and foreign patients. There was considerable overlap between these categories. One negative aspect of establishing relationships with foreign patients involved the unconscious expectation that foreign patients should play the same roles as Japanese patients. Throughout the interaction process, nurses developed a deeper understanding not only of their own culture, but also that of foreign patients. Our findings underscore the importance of facilitating the recognition and promoting the acceptance of cultural differences by nurses.
Impacts of Being a Peer Group Leader for HIV Prevention on Health Workers in Malawi
Kathleen F. Norr
University of Illinois at Chicago
Chrissie P. N. Kaponda
University of Malawi
Linda L. McCreary
University of Illinois at Chicago
Kristina Davis
U.S. Department of Health and Human Services
Mary Kalengamaliro
Middlemore Hospital, Auckland, NZ
Although peer groups have been widely used as a successful intervention strategy for many health issues, few studies have examined how being a peer leader affects leaders themselves. In this qualitative descriptive study, we interviewed 18 health workers who served as volunteer peer leaders for at least 12 months, working with groups of other health workers and community members in rural Malawi. The peer groups focused on HIV prevention and had positive outcomes for peer group members. The 18 peer leaders ranged in age from 26 to 48 years. Eleven were female, 15 were married, and their education ranged from primary school through college. Interviews were recorded, transcribed, translated, and coded using content analysis aided by Atlas.ti software. Intercoder agreement was > .85. Peer leaders expressed a sense of hope toward the future because they had better knowledge of HIV infection risks and protective measures, and they reported decreasing their own personal risky behaviors. They exhibited pride in being change agents and recounted many instances of spreading HIV prevention messages beyond the peer groups, at work and in their families and communities. They challenged social norms by discussing taboo topics of sexual risk behaviors and HIV. Previous research has identified that health workers in many African countries feel overwhelmed, demoralized and hopeless in the face of the AIDS epidemic. In contrast, these peer leaders felt empowered by their experiences. Involving health workers in efforts to address the HIV epidemic may be one successful approach to improve morale and reduce burnout.
Knowledge Translation and Qualitative Research: The Tao of Puzzles
John Oliffe
University of British Columbia
Joan Bottorff
University of British Columbia
Gayl Sarbit
University of British Columbia
The purpose of this presentation is to illustrate an innovative approach to knowledge translation that used knowledge broker facilitated processes to focus on fathers' smoking as a means to developing an intervention to support fathers' tobacco reduction (TR). Innovative consultation sessions were held with three groups to inform the design of a father-centered tobacco reduction intervention. Included were (a) new fathers who smoked or quit during their partner's pregnancy and postpartum, (b) new mothers whose male partners smoked, and (c) health professionals, service providers and policy makers with potential to assist with piloting and implementing the intervention. In our presentation details are provided about the way in which puzzles and other methods were used to communicate research findings to the diverse consultation groups in ways that triggered and stimulated interaction and vigorous discussion among participants, and generated new ideas. Iterative processes were used for continuous revision of the session protocols to best meet the needs of the diverse consultation groups and to transition previous findings into an intervention. Transcribed data from the consultation groups were content analyzed to identify directions for applying the findings as interventions, as well as distilling men-centered health promotion principles to guide the efforts of other programs. The success of these innovative methods to support knowledge translation are evident in the novel content and disseminating strategies, and these details along with the print based version of the father-centered tobacco reduction intervention are shared in our presentation.
Suicide From the Perspectives of Older Men Who Experience Depression
John Oliffe
University of British Columbia
John Ogrodniczuk
University of British Columbia
Christina Han
University of British Columbia
Suicide is a major issue among older men, for which severe depression is often implicated as a mediating factor. Although various aspects of grief and loss including bereavement and retirement have been linked to older men's depression and suicidal, the connections to masculinities are poorly understood. Guided by the overarching research question, how does depression and suicide link to older men's masculine roles, identities, and relations, we present findings drawn from semistructured, individual interviews with 22 men (55–79 years old) who self-identified or were formally diagnosed with depression. Our findings revealed how cumulative losses amid stoicism and/or social isolation were central to men's unresolved grief. Prominent were issues around self-assessing as a failed provider and protector, judgments that led men to ruminate while recognizing their older age and mortality as eroding opportunities for redemption. The participant's narratives revealed external and internalized stigma as barriers for acting on suicidal ideations that frequently emerged from their negative thoughts. That said, although guilt around the stigma endured by a bereaved family was a barrier for suicide, many participants contemplated a self-induced death that was not obviously suicide as a means to making available life-insurance benefits for their family. Our findings reveal how masculine ideals and participant's alignment to specific performances influenced their actions and non-actions around self harm and suicide. In concluding the presentation we offer some recommendations for how the diversity of masculinities that emerge around men's mental illness practices might be used to inform aspects of older men-centered suicide prevention programs.
Arranging for Alternative Caregivers: Challenges to Safe Care for Parents of Children With Disabilities and Chronic Conditions
Lise Olsen
University of British Columbia
Mariana Brussoni
University of British Columbia
Anton Miller
University of British Columbia
Maureen O'Donnell
University of British Columbia
Research indicates a higher risk of injury for children with different types of disability and some chronic health conditions. Parents play a large role in mitigating childhood injury risks, yet there has been little research examining how injury risks related to child disability or chronic conditions are perceived and managed by parents. One consistent issue for these parents is the arrangement of safe care by alternate caregivers. Qualitative semistructured interviews were conducted with parents of children 1 to 5 years in British Columbia, Canada. Questions addressed parents' safety concerns, impact of children's health challenges on safety efforts, and how parents arranged for alternative caregivers. Grounded theory methods guided data analysis. Parents of children with a range of disabilities and chronic conditions were interviewed for the study. Findings included that some parents regularly left children in the care of others whereas others did so very rarely. Parents reported that a lack of suitable care options and training of alternate caregivers regarding their child's special needs were a challenge. Arranging safe alternate care caused worry and concern for parents and a lack of suitable options resulted in some parents receiving little respite from child care responsibilities. Parents' safety concerns presented a major barrier to arranging alternate care for their children. Strategies to improve options for parents should be considered including how specialized safety training can be provided to those working in formal as well as informal child care settings.
Bush Battles: The Challenges of Providing Acute Health Care in Rural Contexts in Australia
Vicki Parker
Hunter New England Health Service
Michelle Giles
Hunter New England Area Health Service
Glenda Parmenter
University of New England
Isabel Higgins
University of Newcastle
Penny Paliadelis
University of New England
Angela White
Hunter New England Area Health Service
Introduction. In Australia, the rural health care environment is characterized by increasing disadvantage in relation to access to services and resources. Within this context, health professionals are challenged to provide what they feel is good-quality health care in a community of which they are a part. This paper presents the results of a study which aimed to
identify challenges confronting health care professionals in rural acute care settings and
facilitate interprofessional collaboration in working toward improved patient outcomes and staff participation.
Method. A mixed method approach involved a consultative, participatory process. An initial survey was followed by focus groups and workshops. The target population was health care professionals across disciplines, in rural acute care facilities within one large Area Health Service in NSW, Australia. Workshops facilitated interdisciplinary collaboration to identify strategies for addressing concerns with the aim of developing priorities for practice change projects.
Results. Results highlighted issues to do with staffing, isolation and communication as most significantly impacting on staff and patient outcomes. Access to resources and support services was the most frequently cited challenge. Results were consistent across professions and sites within the Area Health service. Focus groups identified a range of issues related to geographic and professional isolation, working with and apart from larger centers, generalist practice, and insufficient services and staff.
Conclusion. Findings point to the urgent need to support clinicians through the mobilization of strategies that are context specific, locally based and led, but at the same time transferrable across sites.
Interprofessional Practice: Possibility or Pipedream
Vicki Parker
Hunter New England Health Service
Rebecca Mitchell
University of Newcastle
Michelle Giles
Hunter New England Area Health Service
Recognition of the importance of interprofessional practice in health care is growing. This recognition is based on research that identifies improvements in patient and service delivery resulting from shared decision making and coordinated activity. However, other studies identify interprofessional teams as a site of tension and contested authority. This paper reports the findings drawn from a qualitative study that examined health care professionals experiences of being part of an interprofessional team, the challenges as well as the triumphs.
Method: Focus groups and interviews were held with teams and individuals who were members of an interprofessional team in an acute care context in a tertiary referral hospital in NSW, Australia. Participants included nurses, doctors, physiotherapist, speech therapists, and dieticians.
Results: Participants highlighted openmindedness and goal co-operativeness as factors that enabled the development and ongoing functioning of the team and consequent adoption of team identity. Team member supported each other in dealing with the structural barriers to team working within the hospital environment. Tensions arose from the discipline specific demands on individuals that threatened the teams' activity. Processes that were identified as critical to team success were team processes, communication and shared leadership. Although there were often arguments within teams, individuals felt that being able to put forward their professional perspective increased their profile and their sense of being valued within the organization. Participants described having to work hard to keep the team together.
Conclusion: Interprofessional team success is contingent on resisting persistent destabilizing forces and creating supportive and enabling processes.
Shifting from Critical Care to Comfort Care: Communication Between Health Care Providers and Families
Cynthia Peden-McAlpine
University of Minnesota
Joan Liaschenko
Attention to end of life issues in critical care is a recent phenomenon and a review of the literature identified the major problems as the unclear distinction between critical illness and terminal illness and the unpredictability of timing when the focus of care should change from critical care goals to comfort care goals. The aim of this study was to investigate the context of communication surrounding trajectories of dying to identify challenges and possible solutions to the problems of shifting from critical care to comfort care. Stake's case study method was used to study this problem. Narrative interviews of six cases consisting of the family and health care providers of dying patients in ICU were completed. Data was analyzed to illuminate patterns, relationships, and relevant meanings. The findings illustrated that families lack understanding of the whole picture of the patient's deteriorating condition and the prognostic implications. This is mostly due to information received in fragments and the stress they are experiencing. Even with the best information given to families they need time to process and a comfort level with providers to achieve consensus about the shift from critical care to comfort care. Families require emotional support, mediation and clarification on an ongoing basis. Families want information related to odds of survival and quality of life and a rationale for the meaning of the patient situation to the provider. Implications include providers' attention to individualized care and inclusion of family in decision-making facilitating consensus between the family and provider.
Communicating About Congenital Anomalies With Parents
Hagit Peres
Ashkalon College & Ben Gurion University
Delivery of biomedical information about suspected congenital anomalies is always emotionally sensitive challenge for practitioners, which strongly influences parents' decisions whether to terminate compromised pregnancies or build capacities to care for newborns with severe disabilities. Tension increases tremendously when medical practitioners deliver Western-oriented ideas while patients belong to non-Western minorities. The Arab-Bedouin population's case displays language and cultural barriers, as well as sociopolitical tensions inherent challenges for obstetric-gynecologists and neonatal staff. Sixty qualitative interviews held with Arab-Bedouin couples who were diagnosed with severe congenital problems are the basis for this study. Parents interviewed recall ordeal experiences from the moment they were informed about their babies' compromised health situations. Their perspectives and perceptions teach us how mutual misunderstandings and failure to mutually communicate ideas and emotions leading to distrust. Here I offer an amplification of our understanding of these parents' perspectives by pointing out information gaps as well as the diverse social and emotional reactions created in the context of clinical perinatal sessions. Arguably, the prominent importance of cultural competency revealed by medical staff in each of these distressful situations could not be overestimated. By listening to these parents the aim here is to further sensitize and develop the culturally competent medical practice, hoping to improve medical performance in ways that will minimize parents' suffering and establish effective and beneficial communication. Ultimately, the goal is to maximize trust in relations between parents and medical services at large.
Courtesy Stigma: A Hidden Health Concern Among Frontline Service Providers to Sex Workers?
Rachel Phillips
University of Victoria
Courtesy stigma is the public disapproval evoked by associating with stigmatized individuals or groups. Several studies have examined how family members of stigmatized persons are negatively affected by courtesy stigma, but there has been little research examining how workers providing frontline health and social services to stigmatized populations might also experience courtesy stigma. Research on the occupational health of persons performing frontline service work examines various sources of workplace demands and rewards, including the availability of public funding for the health and social service sectors, the devaluation of feminized forms of care-oriented work, and the downloading of responsibility for providing care to poorly paid or unpaid workers in the community and home. This research project blends the literatures on courtesy stigma and the occupational health of frontline service workers to understand the experiences of those providing frontline social services to sex workers. A mixed methods design is used to study the workplace experiences of a small group of workers (N = 17) in a nonprofit organization providing support and educational services to sex workers. The findings reveal that courtesy stigma is a discernable experience among this vulnerable group of service workers, affecting both their work and family contexts. Courtesy stigma played a significant role in staff perceptions of others' support for themselves and their work activities, leading to diminished opportunities for collaborative relationships, emotional exhaustion, altered service practices, and a low sense of workplace accomplishment. The implications of the findings for the literatures on courtesy stigma and frontline service work are considered.
“Under the Microscope”: The Challenges, Risks, and Responsibilities of Conducting Health Research With Marginalized Populations
Cheryl Pritlove
York University
Parissa Safai
York University
Qualitative approaches and research findings are said to help dispel misconceptions about marginalized populations by allowing such groups to have their voices heard and stories told, thus empowering people who lack social, political, cultural, and/or economic capital. Far too frequently however, it is overlooked that the participant/researcher relationship formed within this methodological approach can be, and often is, situated against the backdrop of broader social power differentials (including, but not limited to differences in income, education, illness, sexuality, “ability,” and gender), thus casting doubt on the potential of qualitative research to act as a venue of participant empowerment rather than a site of reproduction. Touching briefly on some of the “how to” issues that arise at different stages of the research process, such as recruiting and interviewing, this presentation will consider the particular methodological challenges and/or risks associated with knowledge (and knowledge production), researcher/participant relationships, power, ethics, and social justice as situated within their particular political, personal, and relational frameworks. Specifically, the focus of this presentation will be on my methodological experiences and challenges as a researcher working with low income women with cancer. Embedded in this specific discussion will be a broader evaluation of how well intentioned researchers can unintentionally reproduce problematic discourse while working with marginalized groups and to highlight the importance of researcher reflexivity and participatory approaches as potential ways of negotiating such methodological challenges.
Qualitative Study on Factors Influencing Positive Prevention Among People Living With HIV/AIDS in Iran
Seyedramin Radfar
Thought, Culture and Health Institute
Pardis Nematollahi
Thought, Culture and Health Institute
Introduction: Positive prevention could be considered as one of the main strategies that can reduce or reverse the HIV/AIDS epidemic. This qualitative study tried to obtain the factors that can promote positive prevention practices among PLWHA in Iran.
Methods: The main tool for obtaining of the ideas was focus group discussion with men and women that were living with HIV/AIDs in 6 provinces of Iran that had different geographical and etnicity.64 PLWHA (16 women, 48 men) in11 FGDs in 6 provinces had been interviewed and sessions analyzed by thematic approaches. The main themes were knowledge and information of the participants about routes of transmission, responsibility of participants about other's health and positive prevention concepts.
Results: Based on the findings the main factors that influence positive prevention approaches could be categorized as stigma and discrimination (in context of family, community and medical),disclosure barriers (pressure from spouse, phobia of unemployment after disclosure),using drugs and alcohol, active sex work, low religious opinions, poor or no access to ARV, needle and syringe programs especially in closed settings, unmarried status, lower education, and poverty were the factors that influence positive prevention practices.
Conclusion: Among the factors that mentioned above, majority near to all of the participants believe that stigma and discrimination, using drugs, active sex work, low access to NSP/ARV, and low religious belief can be considered as the main factors, and it is recommended to work and promote the situation of these fields to achieve better positive prevention practices.
Caring TV as a Client-Driven Service Design
Katariina Raij
Laurea University of Applied Sciences
We have applied action research in developing the CaringTV® as a two-channel interactive TV-system. It aims to develop new technology based solutions for elderly people living at home and for municipalities dealing with challenges in health and social services. The CaringTV has been developed in four different R&D projects with clients representing family care givers (n = 25), elderly people discharged from hospitals (n =44) and elderly people using services delivered by special service houses (n = 70). Action research was used as a practical, participative, reflective, and social process. The purpose was to study elderly people's social reality to change it and change reality in order to study it. The study consisted of circles with four phases: observing, reflecting, planning, and implementing with and for clients. We call this a client driven service design. Findings are presented by applying Haberman's three domains of knowledge. From a technical point of view we have the CaringTV platform. From a practice-hermeneutic point of view we have identified a family caregiver, different user groups, the challenges elderly people discharged from hospitals meet at home, and an elderly person as a client in service houses. From an emancipatory point of view virtual, interactive support and guidance services and participative programmes are developed with and for elderly people to improve their capacities. The concept of a client-driven service has been created as the indicators of quality of life based on the elderly people's own conceptions. They have led to the development of e-health services.
A Poor Excuse? An Examination of How the PTSD Defence Plays out in the Canadian Press
Tamara Reid
Simon Fraser University
Posttraumatic stress disorder (PTSD) is an increasingly pervasive, though controversial, diagnosis that emerged from the notion of “shell shock” in war that is now invoked with increasing frequency in court as a mitigating factor at sentencing and/or as the basis for a related defence. This project reviews the development of the diagnostic category and controversies that surround it and reports the results of a content analysis of 401 newspaper articles detailing 121 unique cases in which PTSD was invoked. Results revealed that professional controversies surrounding PTSD have filtered into journalists' representations. Perceived legitimacy of the defence hinged on simplistic conceptualizations of the plausibility of the diagnosis, specifically, as concerns ideas about what it means to be a victim, and the severity of crime(s) committed. Empathy prevails when the possibility for trauma is obvious, and the crimes committed are minor. The greater the heinousness of the crime, the greater the likelihood that a PTSD defence will be dismissed as insufficient or irrelevant. Moreover, the author advances the position that the offender who is linked to the PTSD diagnosis in crime stories becomes a “face,” whose reported biography and features contribute to shaping the prevailing view of the problem with which he or she is associated, subscribed to by both the media professionals who represent these cases and the general public who reads about them. Hence, certain characters make bad representatives when advocating for the acceptance that the effects of trauma can be such that criminal behavior can unwittingly ensue.
Promoting Student Success in Online Courses
Sue Robertson
California State University, Fullerton
Penny Weismuller
California State University, Fullerton
Mary Lehn-Mooney
California State University, Fullerton
Yvonne Ginez-Gonzales
Long Beach VA Medical Center
Although research has identified faculty support and availability as key student motivators and critical to successful online learning outcomes, specific behaviors constituting support and availability have not been identified. This pilot study sought to identify students' perspectives of faculty behaviors supporting success, and methods used by student-identified faculty exemplars to promote student success. Fifteen students who described themselves as successful in fully online courses and the 10 faculty exemplars identified by these students were interviewed. Interviews were audiotaped and transcribed. Content analysis was used to analyze data. Researchers read interviews to obtain a sense of the whole, coded interviews individually, then met to reach consensus on codes and to develop categories and themes. Students wanted to know faculty were as invested in students' success as students were. Categories around this theme were Organization, both of the course/online environment and how students organized their time; Communication within the course and with the faculty; Connection to the faculty and other students in the course; and effective Teaching strategies and relevant assignments. Faculty exemplars identified the same categories but described them from an ontologically different perspective.
Impact of Family and Personal History of Abused Pregnant Women on Their Coping With Current Intimate Partner Violence
Linda Rose
Johns Hopkins University
Shreya Bhandari
University of Missouri
Kristin Marcantonio
Johns Hopkins University
Linda Bullock
University of Missouri
Phyllis Sharps
Johns Hopkins University
Intimate partner violence (IPV) affects 3 to 4 million women each year. Interventions must consider the contexts of women's experiences of abuse, how women view their situation, and what their options for responding to the abuse. Pregnant women who are abused may have experiences in their families of origin that influence their views of current relationships, and responses to abuse. Qualitative interviews were conducted with a subset of 37 pregnant women with a history of IPV or current IPV, enrolled in a clinical trial. Women were interviewed prior to giving birth and at regular intervals for 2 years postdelivery. Interviews focused on family context of abuse, response to abuse, and barriers and facilitators to help seeking. This presentation reports findings from baseline interviews. Interviews were tape recorded and transcribed verbatim. Data were analyzed using constant comparative analysis. Themes were: relationships with parents; witnessing and/or experiencing abuse as a child; foster care experiences; and parental drug abuse and mental health concerns. Further contextual factors were: previous abusive relationships, “pile up” of current stressors, including financial constraints and multiple children, and fear and fatigue related to abuse. These family and personal history factors may influence women's ability to cope with the current IPV, resulting in a deficit in coping repertoires. Assessments of self-concept and mental health should be integrated into interventions. Past relationships and evaluation of present circumstance reflected both a psychic fatigue and resilience.
Meaning of Donation Experience for Living Kidney Donors
Linda Rose
Johns Hopkins University
Marie Nolan
Johns Hopkins University
There is an urgent need for living kidney donors, as the shortage of organs is increasing. Living donors are a viable option; but the need to understand the impact of donation on the donor is essential in order to meet their needs for physical and psychological support. This study explored the meaning of kidney donation in a diverse sample of living kidney donor candidates. Seventeen donors were interviewed 4 times from predonation to one year postdonation. Interviews were transcribed verbatim and analyzed using thematic analysis. Data were grouped into four categories: (a) attitudes, perceptions, and emotions related to donation; (b) motivating factors influencing decision to donate; (c) family influence on decision making and quality of experience; and (d) implications for transplant care. The following themes were identified: (a) donating is a positive physical and emotional experience; (b) donating is imperative to ease the recipient's suffering; (c) donating is reflective of self and/or relationship with recipient; (d) experience is influenced by type and quality of family involvement; and (e) donating includes self-evaluation of immediate recovery and long term impact. Most participants described a positive experience, but some donors experienced more complex reactions and had needs for ongoing support. The importance of relationships between donors and recipients was significant, and the impact of “being a donor” became a lasting characteristic of their self-identity. This presentation will include implications for transplant teams.
Stories of Life and Birth: An Intergenational Study
Natália Salim
University of São Paulo
Hudson Santos Junior
University of São Paulo
Dulce Maria R. Gualda
University of São Paulo
Childbirth is an event with different meanings in multiple sociocultural contexts. In fact, this has led to changes in customs and practices present during the moment of giving birth. This goal of this study was to understand the experiences of childbirth and maternity from the stories of women of different generations of a Brazilian family who experienced childbirth from the 1940s up to the year 2000. This is a qualitative study that focused on practical discussions and feelings produced during the experience of giving birth. Eight women, all residents of the southern part of Sao Paulo City, participated in this study, which involved interviews that took place in the actual residences of the participants. A semi-open method was chosen to enable the sharing of stories and feelings. Interviews were recorded after receiving participants' authorization and later transcribed. During the analysis of dialogic responses, maps were elaborated from these interviews, which allowed the viewing of the different feelings involved in the experience of childbirth. These feelings are associated to family and cultural experiences, which reveal the sharing of repertories and various types of childbirth care throughout generations. The uniqueness surrounding the birth stories, allowed an understanding of the values, deeply rooted in these experiences of childbirth for women, and it may be said that, these experiences of labor relations are linked to the stories that affect what women have experienced during their lifetime.
“Grasping the Gray”: Making Meaning About Huntington Disease Intermediate Allele Predictive Test Results
Alicia Semaka
University of British Columbia
Lynda Balneaves
University of British Columbia
Michael Hayden
University of British Columbia
The genetics of Huntington disease (HD), an incurable neurodegenerative disease, is often portrayed as “black or white”; an individual is either gene-positive or gene-negative. However, over the last decade, HD has proven to be more complex with a proportion of individuals receiving a “gray” genetic test result, an intermediate allele (IA). These individuals will not develop HD, yet unusually their children remain at risk. The purpose of this study was to investigate individuals' understanding about the clinical implications of an IA and explore the process they undergo when making meaning about this result. In a study involving grounded theory methodology, 28 individuals who received an IA result from 4 genetics clinics participated in an open-ended interview. Many participants struggled to understand the clinical implications and make meaning about this result for themselves and their children. The degree to which an individual struggled to “grasp the gray” was influenced by their familial experience with HD, their beliefs about HD inheritance, and the genetic counseling they received during their genetic testing. Although some individuals were uncertain about the meaning of their gray result, other individuals assigned this result either a “free and clear,” “it could be worse,” or a “threatened future” meaning. This is the first study to examine individual's understanding of an IA and indicates that more than half of the participants were either uncertain or had incorrect knowledge about the clinical implications of their result. These findings will help inform the development of genetic testing guidelines and ensure these individuals receive appropriate education, counseling, and support.
The Lived Experience of Latinas Who Listen to Music for Chronic Pain
Patricia Shakhshir
Western University of Health Sciences
Chronic pain, pain that persists beyond the expected time of recovery is difficult to manage. Women and minorities tend to have difficulty obtaining treatment. Women tend to be proactive in seeking complementary alternative treatments (CAM). Multimodal interventions of analgesics and alternative complementary interventions are the recommended approaches. Listening to music is one type of complementary intervention. This study explored the lived experience of Latinas as they listened to music, an intervention for chronic pain control. The participants were asked to follow their normal patterns, which included taking analgesics. The participants were interviewed and audio-recorded three times over three visits. They kept journals in which to write their experiences. Follow-up interviews were carried out after each journal was analyzed. Clarification was sought during the follow up interviews related to points that were unclear in the journals. Ten women ages 30 to 50 participated. All but one of the women identified themselves as either Mexican or Mexican-American. Four specific themes were derived from the interviews and journals: (a) replacement of unpleasantness with beauty, (b) feelings of hope and joy, (c) music as a gift from God, and (d) music for comfort. Music has provided much more than pain relief for these participants; it has provided respite from a life filled with pain, beauty, and for some, replenishment and hope. This study may be replicated with other cultures and/or gender.
Lessons Learned in Innovation: Role Transition Experiences of Clinical Nurse Leaders
Rose Sherman
Florida Atlantic University
Purpose: The Clinical Nurse LeaderSM Project was initiated by the American Association of Colleges of Nursing in April 2004. To date, more than 100 universities/colleges in the US are participating in the project with over 200 clinical partner. The CNL role is the first new role proposed for nursing since the Nurse Practitioner role was introduced in the mid–1960s. The purpose of this research was to explore the role transition experiences of Clinical Nurse Leaders working in practice settings throughout the United States.
Methodology: This was a qualitative study using an interpretative phenomenological analysis approach. Semistructured telephone interviews were conducted by the investigator during 2007/2008 with 71 practicing clinical nurse leaders throughout the United States. The work was funded by a Robert Wood Johnson Executive Nurse Fellows grant.
Findings: Topics explored with the CNLs included what influenced their decisions to prepare themselves for this pioneering role, their satisfaction with their role, educational preparation, challenges with the role, organizational support for the role, impact on patient outcomes, and how they viewed the future of the role. The journey for pioneering CNLs has been challenging but most are confident that they are having a significant impact on patient and staff outcomes. They view the future optimistically but are aware that unless they can make a financial case for the role, it may not survive in the current economic atmosphere in the United States.
Significance: Lessons learned in innovating this new educational program and clinical role will discussed.
Awareness of Dying and Dying Trajectories in People With Heart Failure and People With Lung Disease: Revisiting Glaser and Strauss
Neil Small
University of Bradford
Merryn Gott
University of Auckland
In 1965 and 1968 Glaser and Strauss published Awareness of Dying and Time for Dying, examining awareness contexts and temporal aspects of work with the dying. They sought to “make the management of dying by health professionals, families and patients more rational and compassionate.” In this paper we report qualitative research on the end-of-life care of two groups of people living with terminal illness in the United Kingdom. One group had a diagnosis of heart failure (40 patients and 20 family members), the other chronic obstructive pulmonary disease (COPD) (21 patients, 16 family members). In addition we undertook focus groups with 79 health care professionals involved in heart failure care and 39 health care professionals working with COPD. More than 40 years after Glaser and Strauss we identified awareness contexts that included the closed, when the person with the illness is not aware of the significance of their diagnosis. It was this, with corresponding “problematic identity” for the patient, that had been Glaser and Strauss's target for change. In part this closed awareness is a manifestation of uncertain illness trajectories and the resulting impasse that, as Glaser and Strauss identified, “dying must be defined in order to be reacted to as dying.” Our qualitative interviews with patients and carers and focus groups with professional care staff show the continuing resonance of Glaser and Strauss's insights. Advances toward open awareness and improvements in managing the status passages of terminal illness have been largely confined to cancer care.
A Qualitative Evaluation of the Prerelease Planning Program for HIV-Positive Former Georgia State Prisoners
Donna Smith
Georgia State University
Richard Rothenberg
Georgia State University
This paper presents results from a qualitative evaluation of the Pre-Release Planning Program (PRPP) of the Georgia Department of Corrections. Begun in 2004, PRPP provides comprehensive discharge planning for HIV-infected prisoners being released from Georgia state prisons. The program was created because of compelling evidence that HIV+ former inmates may not adhere to their antiretroviral therapeutic regimen, may practice behaviors that place others at risk for contracting HIV infection, and may be more likely to return to prison. With a single Pre-Release Coordinator, PRPP currently serves only 25% of eligible inmates state-wide; ours is the first formal evaluation of the program. Utilizing a grounded theory approach, we conducted 25 in-depth, qualitative interviews with PRPP participants who had returned to the Atlanta metropolitan area within the previous 18 months. These interviews provide textual “snapshots” illustrating the challenges faced by all former prisoners, challenges only exacerbated by the marginalized health status and stigma experienced by persons living with HIV/AIDS. The sense one gets from these interviews is that of adults released to the so-called “free world,” but in a state of constant tension and strain that is unsustainable. Although the PRPP program successfully links HIV+ former Georgia state prisoners to medical care and other basic social services such as food stamps, participants noted repeatedly that their greatest needs were finding transitional housing and employment. Supporting these needs is beyond the scope of the PRPP program as currently structured. This evaluation makes clear that greater institutional support is needed for this highly disadvantaged population of HIV+ former prisoners.
Using Institutional Ethnography to Explore Community Treatment Orders
Nicole Snow
Centre for Nursing Studies
There is considerable debate concerning the use of community treatment orders (CTOs) in mental health practice. CTOs involve mandated community treatment in which individuals with a mental illness are expected to engage in medication or other therapy against their will (Canadian Mental Health Association, 1998). This study will explore the consideration and implementation of CTOs through the use of institutional ethnography. Developed by Dorothy Smith, this method seeks to elucidate the everyday life experiences that occur within an institution. The everyday work of individuals is influenced by the social structures and discourses known as ruling relations inherent within an institution. These ruling relations exist often without people's overt knowledge or awareness (Smith, 2005). Participants in this study will include clients, family members, staff, managers, and individuals within the mental health courts who have experience with CTOs in mental health settings. Data will be collected through interviews, observations, and review of institutional documents. The information obtained will be examined for evidence of the social web of influence that governs everyday ethical actions. These social and ruling relations will be mapped in accordance to their relationship to and influence over one another. It is anticipated that the results obtained will be of considerable interest to practitioners, advocacy groups, families, and individuals with mental health concerns. In bringing these social patterns and structures to light, there is hope that the resulting awareness will foster a greater willingness for individuals involved with the mental health system to ethically engage with one another on a more meaningful level.
Phenomenological Study of Social Media Messages From Under the Haitian Rubble
Susan Speraw
University of Tennessee-Knoxville
Maureen Baksh-Griffin
University of Tennessee-Knoxville
Suzanne Boswell
University of Tennessee-Knoxville
This research addressed gaps in understanding of the immediate human ordeal of living through a disaster, exploring the lived experience of Haitian survivors of the January 2010 earthquake, and expatriates and non-Haitians among the first responders to arrive. Applying content analysis and phenomenological research methods, 3,602 Twitter™ text messages generated on-scene and posted on the Internet to public social networking sites, 627 blog entries, and 176 postings on a Haiti listserv between January 12 and February 25, 2010. This research was determined by the University of Tennessee Institutional Review Board to be exempt from full board review due to the nature of the data: social networking messages posted in the public domain where authors had no expectation of privacy, and wrote for the express purpose of having their observations broadcast to the larger world. Line-by-line analysis of messages was conducted by the three researchers, working independently and together over time and numerous sessions to code and reconfirm thematization and conclusions. Analysis revealed trauma and poignant struggles of people seeking to preserve dignity and find answers to core existential questions of meaning, death, freedom and isolation. Findings have implications for research and training. This is the first time social media messages have been analyzed as a basis for planning psychosocial interventions in disaster. Comprehensive preparation of professionals from many disciplines responding to disasters of catastrophic proportions is critical, since conditions they face may prompt existential crises of significant proportion, whether their roles are in coordination, direct care, or as survivors.
Unsung Heroes: Disabled Responders to the Rescue Following Hurricane Katrina
Susan Speraw
University of Tennessee-Knoxville
Deborah Persell
Arkansas State University
A phenomenological study of 12 adults with significant disabilities illuminated their experience of responding to survivors of Hurricane Katrina in evacuation shelters during and after the storm. Face-to-face interviews 30 to 90 minutes long, took place across the United States. Participants responded to the question, When you think about your experience responding to survivors of Hurricane Katrina, what stands out for you? Line-by-line analysis of transcripts and development of a thematic structure of experience was completed by researchers working in a university interdisciplinary research group. Member checking confirmed interpretation. Ten participants were victim-survivors who experienced the storm in a neighboring state less severely impacted. Normalcy was the context of their rescuer experience; for all participants the storm itself and its personal impact were secondary. In narratives, personal limitations were minimized as factors influencing actions. Figural to their experience was the world of possibilities, what they could accomplish with their talents and abilities, focusing primarily on displaced persons who had disabilities and whose medical necessities such as wheelchairs had been destroyed. Getting the job of meeting others' needs done, navigating environmental and attitudinal barriers, and recreating whole lives for the people they rescued were figural. Working with aid agencies like the Red Cross was difficult because most agency volunteers staffing the shelters perceived them as unqualified to assist. Actions of disabled participants in a rescuer role challenge common perceptions of them as weak, and highlight ways they can use their expertise to respond effectively as response team members in disaster situations.
A Psychosocial Rehabilitation Program for Institutionalized Chronically Mentally Ill Patients
Johanita Strumpher
Nelson Mandela Metropolitan University
Nelis van Nikerk
Kirkwood Care Cente, Life health Care
In South Africa a few large institutions for the care of chronically mentally ill patients still exist. Residents consists of chronically mentally ill patients who had been living in the facility for a long time as well as patients admitted from the community where there sometimes is a lack of proper accommodation and rehabilitation- and supportive services. These patients tend to become institutionalized and lose their skills for independent living. As deinstitutionalization is a formal policy of the Department of Health, institutions caring for the chronically mentally ill need formal rehabilitation programmes to help patients develop the skills necessary for community living. A psychosocial rehabilitation program was developed for a 700-bed institution caring for the chronically mentally ill. The researcher did a needs analysis to determine residents current skills, skills needed for community living, and the psychosocial and rehabilitation services available to the mentally ill as well programs that could be adopted for rehabilitating patients. A categorization framework was developed creating homogeneous groups based on their potential for rehabilitation. Programs were designed to meet the needs of each group, based on intervention by multiprofessional team members. A qualitative research design was adopted, using the Delphi technique. Experts in mental health care or rehabilitation were consulted, the programme was explained and the experts were invited to make recommendations. After three rounds of negotiating the content, the program was adopted. Trustworthiness was ensured through using an audit trail. High ethical standards were ensured by adhering to the principles of justice, beneficence, and self-determination.
Power: Moral Implications in Nursing Education
Jane Sumner
LSUHSC School of Nursing
Context: Nursing is said to be a caring profession, yet the environment of nursing education and the external and internal pressures on it, appear to make offering a caring education difficult. If the art of politics is the allocation of scarce resources, then managing scarce resources means power and control. Those lower in the hierarchy have to manage with what is allocated to them. Philosophically, there are moral and ethical issues associated with this. With a nursing faculty crisis shortage in the United States, and pressure to increase the graduation number of students, the internal and external pressures on faculty and curricula are real. The ideal taught in nursing education does not appear to translate well into practice, thus it is timely to examine these pressures and also how these influence nursing education.
Questions: What knowledge should be presented as legitimate? What would enable a school to provide a caring curriculum that will not lead to nurses' disillusionment in practice?
Theoretical Framework: Quadrangular Dialogue: A Framework for Nursing Education (2000).
Method: The methodological lens is critical social theory (CST). This lens examines the unquestioned acceptance of traditional ontology, epistemology, and outcomes of nursing caring. It questions the false consciousness, power, and identifies the gaps in the traditional ethos of nursing. Critical social theory asks, “For whom is this true?” “Are there false assumptions?” “Are there silences?” “What are the inadequacies?” Fontana's (2004) process of CST is utilized.
Discussion: External and internal pressures will be discussed from moral and caring perspectives.
Developing Inclusive Participatory Approaches: Reflections on Research Partnerships With “Seldom Heard” Older People
Denise Tanner
University of Birmingham
Jo Ellins
Health Services Management Centre
There are epistemological, ideological and ethical arguments for the involvement of service users and carers in health and social care research and significant advances have been made in this area. However, there is a tendency for people deemed “hard to reach” or “difficult to engage” to be excluded from participatory initiatives. This paper draws on national Department of Health–funded research, currently in progress in England, exploring older people's experiences of transitions between health and social care services. The project is rooted in a participatory model that embraces partnerships with older service users and carers and key voluntary sector and statutory agencies. An innovative feature of the project is that it engages with two groups of seldom heard service users: older people from black and minority ethnic (BME) communities and older people with dementia. These older people are involved in all stages of the project as ‘co-researchers’ and participants. The presentation shares insights from the project in the following areas:
Practical and ethical issues involved in working with older people from BME communities and older people with dementia as coresearchers. This will include discussion of recruitment, training and support.
Approaches to data collection and analysis that enable the experiences of traditionally marginalized older people to be heard and faithfully represented.
c. Reflections from ongoing evaluation of the project's participatory model.
The presentation reflects work in progress and a critical, exploratory and reflective approach is adopted in discussing the issues encountered and the implications for future service development and research.
We Are What We Do: How Identity Is Constructed Through Meaningful Activity
Jackie Taylor
University of Salford
Occupational therapists believe that there is a fundamental relationship between meaningful activities (occupations) and identity (Christiansen, 1999, 2004), and indeed, this is supported by the theoretical underpinnings of action theory and symbolic interactionism. A healthy repertoire of occupations and a resilient sense of identity enable people to participate, to adapt and to express themselves in society. Previous studies have given evidence that occupations contribute to the construction of identity but more has yet to be learned about how this occurs. This paper presents the results of a study in which narratives, extracted from interviews with 17 leisure enthusiasts, were subject to analysis designed to interpret their meaning, and thus their relationship with identity construction. The leisure occupations of these enthusiasts were taken, in this study, as exemplars of meaningful activities in general. The array of meanings generated from the analysis was organized into a framework, providing a simple structure for understanding “the occupied self.” The framework has three dimensions, enabling the occupied self to be conceptualized as located, active, and changing. Each dimension has facets that may or may not be important in the construction of an individual's unique identity. The framework overlaps with other theories regarding the relationship between meaningful activity, narrative and the construction of identity, but offers a unique perspective, which has usefulness to those working therapeutically with people whose identities have been disrupted or damaged by illness, disability, or other traumatic life events.
Self-Management Support in Interdisciplinary Primary Care Organizations: Contradictions and Consequences
Patricia Thille
University of Calgary
Grant Russell
Monash University
Robert Geneau
Government of Canada
Self-management support aims to empower and prepare patients to manage their health and health care through fostering skill development as well as a sense of responsibility for personal health. Proponents suggest that self-management support and traditional patient education are complementary. The goal is systematic referral to self-management support for those living with chronic illnesses, with other treating clinicians understanding and supporting the process. We studied diabetes care in four new, interdisciplinary primary care organizations in Ontario (Family Health Teams) using ethnographic methods. These organizations are to be leaders in chronic disease management and have several additional supports to achieve this goal. In this analysis, we explored the extent to which these two forms of patient education are complementary in Family Health Teams. We audio-recorded sequential visits of participating diabetic patients with a number of clinicians over a period of 3+ months. Using both constant comparative and discourse analysis methods, we found that registered dieticians were those enacting self-management support most consistently, stressing step-wise and realistic changes in behavior over time. However, multiple clinicians from varying disciplines undermined self-management support provided by extending the discourse of responsibility to outcomes (rather than behaviors), and limiting opportunities for patient input into goals of care and treatment plans. The latter pattern, observed across the Family Health Teams, generates mixed messages for patients about self-management, and risks reinforcing a sense of failure. Our analysis highlights the need for additional strategies to achieving the goal of self-management support integration in Family Health Teams.
Beyond Faith, Hope, and Charity: Becoming a Health Research Subject
Anne Townsend
University of British Columbia
Susan M. Cox
University of British Columbia
Paradoxically, although much research rests on systematic evidence building, research governance apparently does not. We know very little about how individuals experience being human subjects in health research. This presentation draws on interview accounts from the first stage of a three-phase project, Centring the Human Subject in Health Research, designed to investigate the experiences of subjects. We recruited 41 individuals (23 women, 18 men) through multiple strategies to gain a heterogeneous sample and explore diverse health research experiences (e.g., clinical trials, qualitative studies). Here we focus on reports of why people took part in health research. We applied a phenomenological approach to the data, which illuminated the dynamic and multidimensional “lived experience” of becoming a subject. Participants reported a combination of circumstances and motivations that influenced their participation. Common factors included having trust in the system (faith), and anticipating personal health benefits (hope) or benefits to others (charity). Interest, education, a sense of social obligation, a sense of self, the practical circumstances of daily life, and the nature of research procedures also worked to encourage or discourage participation. One observation was how the relative significance of influencing factors changed according to illness status. The “healthy” typically did not take part in clinical drug trials, whereas those reporting an illness condition often actively sought clinical trial participation because they considered it their only hope of effective treatment; they felt they had little choice. This raises concerns about the process of free and informed consent and forms of coercion.
Procedural Justice and Decision-Making in Early Rheumatoid Arthritis
Anne Townsend
University of British Columbia
Paul Adam
Mary Pack Program
Catherine Backman
The University of British Columbia
Susan M. Cox
University of British Columbia
Linda C. Li
The University of British Columbia
Here we apply an ethical framework to interview accounts about early experiences of rheumatoid arthritis, from onset to early postdiagnosis. We describe emerging themes from participant accounts of the early illness trajectory and apply the concept of procedural justice to decision-making and associated illness actions. In-depth interviews were conducted with 8 participants who had been diagnosed with RA in the 12 months prior to recruitment. Highlighting ethical considerations, which arose during the early illness experience, enhance our understanding of the early RA experience. Individuals described decision-making, illness actions and the medical encounter. The process was complicated by inadequate knowledge about early symptoms, common-sense understandings about the role of the GP appointment, problematic patient-practitioner interactions and difficulties with access to specialists. The ethical analysis identified how procedural justice was often compromised in the context of help seeking and the medical encounter. For ethical health care there is a need for effective patient-practitioner communication; increased support during the wait between primary and secondary care.
Researching Research Ethics: Ethics and Methods in a Qualitative Case Study
Anne Townsend
University of British Columbia
Susan M. Cox
University of British Columbia
We report on a chronic illness case study that was conducted to explore the process of research, research participation and research ethics. We identify and discuss issues which surfaced in Phase II of our Centring the Human Subject qualitative project, the primary goal of which is to understand the experience of being a research participant. To gain knowledge from multiple perpectives, we conducted interviews with researchers, ethics committee members, and human subjects who had all been involved in a chronic illness research study. We conducted a total of 19 face-to-face interviews and two focus groups to compare and contrast accounts. The data revealed similar issues between and within perspectives around the importance of research and research ethics, as wel as methodological factors. However, there were some aspects of research participation from the human subject perspective that revealed new and important insights into the experiences and expectations of research participants. Such findings warrant further investigation and ongoing reflection about the research process. Of particular interest was the ways in which ethical issues merged with methodological features, blurring the boundaries between ethics and method.
Unsupported Self-Management in Accounts of Early Rheumatoid Arthritis: “I Was Just Left in Limbo”
Anne Townsend
University of British Columbia
Paul Adam
Mary Pack Program
Catherine Backman
The University of British Columbia
Linda C. Li
University of British Columbia
People self-manage all the time but are often unsupported. This paper's focus is how individuals with early rheumatoid arthritis (RA) self-managed illness from onset to early postdiagnosis. People's self-management activities included working to ease symptoms and continue daily life, searching for information, and negotiating medical encounters and the health care system. This paper draws on the accounts of 38 participants, all of whom had a diagnosis of RA of < 12 months. The topic guide was organized around three broad and overlapping sections designed to elicit detailed accounts about experiences of symptoms during illness onset, the process of the diagnosis, and interactions with health professionals. Analysis was based on a constant comparison method and a thematic approach. We found that people were resourceful and creative in their self-management activities, but had limited support from professionals or the health care system more generally. There seemed to be a mismatch between the ideal of the “expert patient” or the “effective consumer” and support frameworks for people with early symptoms who actively self-managed, searched for information, and attempted to liaise with health professionals.
Managing Complexity: Transition From the Ground Up
Susan Townsend
University of Calgary
This paper will describe how actor-network theory has been used to inform or sensitize a research methodology for application in complex health care sites. My area of interest is health transitions. In this presentation I am primarily interested how this sociological theory can challenge preconceptions embedded in our current understandings of health transitions, health careers, or health pathways and in so doing can open up alternatives in research methodology and analytic argument. I will use the research example of transition into continuing care to consider how an intensive research focus on the meanings of transition, by care recipients or care providers, has provided abundant data yet remains evasive as to how transition is enacted, or even performed in nursing home routines and interactions. Constructionism, as taken up in actor-network theory considers the self as precarious, and identity as elusive, transitional, and negotiated within networks of actors and practices. It follows that taking up the enactment of complex social events such as transition then requires descriptive accounts that, although sensitive to meaning and perspectival accounts, also simultaneously engage the way diverse meanings and practices arise and are negotiated in local interactions across time. Research methodologies that capture the movement of actors in the accomplishment of social assemblies and practices are rooted in ethnography. This presentation considers the ways conversation analysis and other forms of micro analysis might be combined with ethnographies to provide further insights into meaning and practice making as residents and care systems together accomplish transition into care.
A Pediatric Occupational Therapist's Use of Information When Making Clinical Decisions
Merrill Turpin
The University of Queensland
Jodie Copley
The University of Queensland
Health professionals use different types and sources of information when making clinical decisions. In occupational therapy, as with other health professions, different approaches to practice can privilege different types of information. For example, both evidence-based practice (EBP) and client-centered practice are influential approaches in health practice. Although EBP acknowledges the importance of combining practitioner expertise, client values, and research evidence, this approach privileges information generated from systematic research over other types of information, as evident in the various hierarchies of evidence. In contrast, client-centered practice emphasizes the importance of information from and relating to the client in making clinical decisions. This paper outlines an in-depth case study of the types and sources of information used by an expert pediatric occupational therapist when making clinical decisions. Data were collected over a 4-week period through a combination of observation, key information interviews, and semistructured interviews (Miller & Crabtree, 1999) and analyzed inductively. Analysis revealed that the informant used information from a range of different sources such as the child and his or her family and teachers, her own observations and assessments, textbooks and journals, professional development activities, and her professional and personal experiences. She prioritized information about each child in his or her context when making clinical decisions. Implications for practice will be discussed.
Home Safety for Newly Arrived Refugees
Merrill Turpin
The University of Queensland
Emma Campbell
The University of Queensland
Approximately 13,000 people obtain humanitarian program grants for settlement in Australia each year. Through the Integrated Humanitarian Settlement Strategy, the Australian Government Department of Immigration & Citizenship funds settlement services such as on-arrival reception, initial orientation, and assistance with accommodation and basic household goods. Promoting safety in the home is an important aspect of settlement work as refugees have higher rates of emergency hospital admission than the general population (Correa-Valez et al., 2007). As health professionals can encounter refugees in general and specialist health services, they need to be aware of the home safety risks facing this vulnerable population when making decisions such as planning for health promotion activities and hospital discharge. This research aimed to elicit the perspectives of refugee settlement workers regarding the issues surrounding home safety for newly-arrived refugees. Sixteen Australian settlement service employees participated in individual interviews. In addition, observation of a settlement worker performing on-arrival reception and initial orientation was also undertaken. Interviews were audio-recorded, transcribed verbatim, combined with fieldnotes relating to the observation session, and analyzed inductively into themes. The three themes identified were: safety issues that workers consider, factors influencing home safety, and the importance of sensitivity to culture. Each theme will be discussed in this presentation.
Best Practices in Diagrammatic Elicitation: A Novel Approach to Data Collection
Muriah Umoquit
Cancer Care Ontario
Diagrams are often used by researchers in the later stages of their research projects, in the analysis or in presenting final results. Diagrams are valued for their ability to easily summarize complex information and facilitate deep understanding in comparison to verbal or written text. Although often overlooked, diagrams used in the data collection phase can offer these same benefits to both the researcher and the participant. Particularly important to health care researchers, they can also assist in the collection of data on complex and sensitive topics. Diagrammatic elicitation is a data collection method that has research participants create an original diagram and/or edit a researcher-prepared diagram. This presentation draws from a multidisciplinary systematic review of 12 traditional health care and non-health care indexes, Google searches and consultations with experts in the field, as well as from practical experience from the use of both types of diagrammatic elicitation techniques in key informant interviews with over 60 clinicians and senior health administrative leaders. This presentation will discuss the application of this novel data collection method and the implications on data analysis. Best practices and key methodological challenges for both diagrammatic elicitation techniques will be outlined and illustrated with examples. This presentation should be helpful as an introduction to diagrammatic elicitation and be of assistance to health care researchers in considering ways diagrammatic elicitation could be incorporated into their qualitative research designs.
Family Members' and Critical Illness: “Working to Get Through”
Virginia Vandall-Walker
Athabasca University
Alexander M. Clark
University of Alberta
When a relative is critically ill, the workload of family members is augmented. They set to work to manage the situation as best they can in order to provide support to their loved one. What constitutes this work? Two investigations of nursing support for family members of critically ill adult patients, which included 30 participants from three northern Alberta, Canada, tertiary care centers, revealed that to fulfill their needs in response to the situation, these family members engage in physical, emotional, and behavioral work activities. Their needs and the ensuing work to meet them are influenced most by the intensity of their relationship to the ill relative and by their personal resources. Family members engage in Patient-related, Nurse/Physician-related, and Self-care-related WORK to access information, reassurance, respect, and opportunities for partnering in care provision. The grounded theory of family work proposed, entitled “Working to get through,” pushes critical care health professionals' boundaries and challenges the paternalistic perceptions of family member experiences with critical illness that focus on stress and burden. Appreciating the nature and intent of the work of these family members and the needs that motivate this work, can help health professionals more effectively support family members in meeting their needs. These findings not only delineate the process of “Working to get through” but, as well, extend our understanding of the breadth and depth of family members' experiences with critical illness.
Tyranny of ‘Or’: Research or Dissemination? Obligation or Exploitation? Through Community-Academic Research
Hendricus A. Van Wilgenburg
Dalhousie University
M. Nancy Comeau
Dalhousie University
Community- academic research is often presented and promoted as giving a voice to the socially marginalized, stigmatized, and victimized through effective dissemination of findings. Yet, the focus, objective, nature of research, and context in which the research is performed is quite broad. Within such a wide context, it may be helpful for researchers of Aboriginal youth who are particularly vulnerable to harm as individuals, and as a community because of the extreme marginalization, stigmatization, and victimization they have endured to better understand exactly what ethical dissemination of findings is. Clarification of concepts such as “marginalization” and “stigmatization” and how they relate to expected “obligation” and “exploitation” within an Aboriginal research context is important as the ideas and ideals of appropriate inclusion and exclusion continue to gain momentum. Such delineation would allow researchers and Research Ethics Boards considering the ethics of research to appreciate the linkages of certain types of participation processes, specific elements of the community, and particular types of dissemination results. This paper offers a review of a health initiative relevant to the inclusion and dissemination of research involving Aboriginal and non-Aboriginal youth (aged 13–17) from 10 participating schools, from Saskatchewan schools, Manitoba, and northern Quebec and presents potential integrated matrices to guide future ethical thought.
Doctor, Witch Doctor, and Priest: A Case Study in Togo
Giovanni Vassallo
University of Genoa
Father S. is a Catholic priest who works as a healear in Togo. According to the consumer information leaflets attached to the products that he preapares for his patients, he affirms that he is able to heal a consistent number of diseases; some of them are very acute. The treatment includes herbal medicine use, spiritual healing, and redress measures. This is the classical scheme of each African healing cult as the Inhamba ritual described by Turner in his ethnography of the Ndembu. The African traditional medicine concepts have been “translated” through the words of Christianity; for example, the bad spirits that threaten people health become demons. Also if principles remain unvaried, the cause of illness is always a violation of community rules. In African tradition this violation can be linked to many actions (not having respected a taboo, not having given financial support to older relatives, adultery), all summarized in the concept of “sin” as considered by the Catholic Church. In addition, formal elements of the scientific medicine have been introduced. In the “health book” provided by the healer, we can find prayers together with drugs suggested and a formulary to fill up with crosses for the confession. The form can be used by simply answering questions with a cross; in this way the confession can also be done by phone to heal Togoleses emigrated to the United States. After the diagnosis Father S. will send to his patients the medications by mail.
The Liaison Program: Supporting Knowledge Translation and Evidence Uptake
D. Ann Vosilla
Canadian Agency for Drugs and Technologies in Health
Differences in health service structures and health technology capacity between Canada's provinces and territories committed the Canadian Agency for Drugs and Technologies in Health (CADTH) to place local Liaison Officers in participating jurisdictions to transfer knowledge. Each Liaison Officer is CADTH's link with decision makers and practitioners, facilitating requests for information and understanding of how to use evidence to inform decisions. This involves engaging health care decision makers to understand their needs and providing evidence-based information that meets those needs to inform decisions in health care practice. Liaison Officers are knowledge brokers, encouraging uptake of evidence-based resources and innovatively work within the jurisdiction to improve health outcomes. Locally situated Liaison Officers meet with practitioners across their regions, and bridge gaps to bring like groups together to work collaboratively on health technology questions and responses. They provide workshops/ information sessions, to ensure the understanding of practice appropriate health technology assessment (HTA). Jurisdictional outreach activities are tailored to provide appropriate support for HTA use. This approach has been demonstrated to be of value to health decision makers, who receive and provide locally relevant information, and to CADTH, who through this locally obtained information is better able to keep products relevant and useful, to appropriately inform health policy and practice decisions. This knowledge exchange process fosters innovation and assists in mobilizing the practical application of evidence. As local advocates Liaison Officers support informed decision making and bridge the evidence into practice gap by creating partnerships that support knowledge dissemination and reduce duplication.
The AIM Study: Access, Innovation, and Medicines: The Impact of NAFTA on Access to Medicines in Mexico
Benjamin Warren
University of British Columbia
Introduction. Great debate has occurred over the impact of intellectual property (IP) provisions in international trade agreements on access to essential medicines in developing countries. NAFTA was the first such agreement and Mexico was the first developing country to reform its IP system based on treaty negotiations and subsequent obligations.
Methods. A political economy paradigm and case study design was chosen to base the inquiry of how NAFTA has impacted access to medicines in Mexico. In-depth, semistructured interviews were conducted with 20 key stakeholders from government (health and economic ministries), the pharmaceutical industry (Research-Based and Generics), and Academia. Qualitative data analysis was performed using NVivo 8 to code for themes and analyze by stakeholder group. Qualitative methodology was chosen as the best approach to address a complex research question that explores the public health impact of IP provisions on access to medicines.
Results. An understanding of how given flexibilities have been applied to promote access to medicines is presented. Nuances in the Mexican legal system have had both direct and indirect consequences for accessing medicines. Formidable macro-level procurement barriers still exist despite pronounced economic growth over the past two decades.
Global health implications. Greater attention is required on distal determinants that are increasingly global in scope impacting health outcomes. Such determinants include; inadequately negotiated trade agreements and innovation activity, both of which create greater interdependence between people and places around the world.
Social Representations as Subsidies for the Construction of Public Health Policies
Mariana Winckler
USP
Guillermo Jonhson
Federal University Grande Dourados
Neusa Bloemer
Univesity of Vale do Itajaí
Public policies are guided by the premise of meeting human needs. The study of government policies reveals inconsistencies between its formulation and the demands of the population. This situation reveals itself intensively in the field of health needs, where production of knowledge still leaves gaps, making it imperative to increase in the production of knowledge and appropriate technologies. Health policies in Brazil, established around the National Health System, are structured under the concept of health needs but use in their preparation only socio-epidemiological indicators. Therefore, this qualitative study conducted in the city of Camboriú (Brazil) aimed to analyze the social representations of health needs from the perspective of civil society organizations. Where formed as units of analysis all the neighborhoods in the urban area and rural, using as reference the taxonomy of the health needs of Matsumoto (1999), that guided the roadmap for semistructured interviews and data collection, and the content analysis was used as a strategy for the apprehension of reality. On the subject of needs the respondents indicate different meanings, keeping close relation with the health-disease process and the local context. The respondents indicate the community mobilization as a means to achieve the unmet needs. There was a negative view of the professionals by users and the identification that the health practices do not meet the need for autonomy and self-care. It is concluded that the needs are incorporated in sociability itself and that its satisfaction can be translated into various forms of social formations. The analysis of social representations of health needs was evident as an appropriate qualitative tool for sizing the demand, as it contemplates the subjectivity of all actors, and subsidizes the construction of more effective public policies, legitimizing the state as producer of this policy.
Including Self When Researching Gendered Violence: Enabling a Depth and Richness of Understanding Through the Use of Sequential Methods of Analysis
Karen Wood
St. Thomas University
Sylvia Abonyi
University of Saskatchewan
Jennifer Poudrier
University of Saskatchewan
Background: In this paper I provide an overview of a research project that investigated women's narratives of healing from child sexual abuse (CSA). I describe how the inclusion of my self, as researcher, into the research process, led to the use of two sequential methods of narrative analysis: content and structure. I conclude that as a result of including my self in the research process and integrating the two distinct methods of analyses, I achieved a unique richness and depth of findings.
Methods. Fourteen women each told their stories of healing from CSA. Transcripts were analyzed first using holistic content analysis, and then re-storied chronologically using a problem-solution narrative approach. Emerging themes were considered iteratively with researcher reflections, and with literature that drew primarily from anthropology, sociology, and feminism.
Research findings. In addition to documenting stories of healing from women who were sexually abused in childhood, the research resulted in: four themes (naming, remembering and memory; support; crisis and challenge; and, body); a pattern of healing; and, a model of healing that conveys the complexity of the healing process by incorporating the individual, social and political contexts of the women's lives.
Implications for research. (a) When researching gendered violence, the inclusion of the researcher may impact decisions regarding methods of analysis. (b) Sequential methods of narrative analysis may make it possible to achieve a greater depth and richness of findings.
Reducing Health Care Associated Infections in the Vancouver Region
Daniyal Zuberi
University of British Columbia
A shockingly high percentage of patients in Vancouver regional hospitals and health care settings become infected with preventable infections that result in injury and death. While some patients are infected by exposure to infected patients or health care workers, others are infected by the environment or as a result of medical procedures, such as surgeries, ventilator-associated pneumonia or the insertion of catheters. Even for those patients who survive a health care associated infection, the infection can exact a lasting toll for many of patients and the health care system. Preventing contamination of hospitals and other health care setting, and the transmission of infections from health care workers to patients or between patients, has the potential to save scarce health care resources as well as dramatically reduce suffering and improve patient safety and outcomes.
This paper presents findings from qualitative research on the effects of the privatization and outsourcing of hospital support workers in the Vancouver region. Based on in-depth interviews with 70 hospital support workers, this research revealed serious issues in terms of the cleanliness of the hospital environment. Some of these issues include minimal training, high turnover, understaffing and other factors, which have been identified in the infection control literature, as causal factors in relation to hospital-acquired infection rates. This paper also the preliminary findings from digitally-recorded interviews with leading Canadian and international infection control experts and a diverse range of stakeholders in the Vancouver regional health authorities, about reducing the health care associated infection rate in the Vancouver region.
Gender and Prevention of Dengue Hemmorhagic Fever at Sawojajar Village, Malang City, East Java, Indonesia
Lilik Zuhriyah
University of Brawijaya
Enggar Fitri Loeki
University of Brawijaya
Al Rasyid Harun
University of Brawijaya
Behavioral and environmental factors play important roles in the prevention of DHF. Larva control conducted by jumantik has been applied for a long time. However it does not have satisfactory results. One of the reason of the failure of mosquito nest eradication (PSN) is lack of community participation. The hypothesis that there is bias of gender, and its implication in preventing DHF need to be studied. The aim of this study is to explore men and women's opinion regarding DHF and method of prevention. Research which was conducted on Juli—December 2009 was qualitative research. The population was public figures and health caders at Kelurahan Sawojajar Malang City. Data were collected by focus group discussion (FGD), in-depth interview, and observation. Data were analyzed qualitatively using triangulation method. The results show that men and women group have different opinion about method of prevention. The men's group preferred fogging, whereas the women's group preferred behavior change. Problems faced were lack participation of some people and the presence of empty houses or neglected lands. Health cadres expect that mosquito larva monitoring can include the involvement of community, and their efforts can be rewarded properly. The mother is the person who responsible for the cleanliness inside the household, whereas fathers are responsible for the cleanliness of the outside. Health cadres are considered to be helpful in the monitoring of mosquito larva in the community. However, their skill should be improved regularly. It can be suggested to puskesmas to approach and socialize with public figures and provide health cadres with communication training.
Symposia
Methodological Issues When Conducting Research With Children and Adolescents
This symposium will focus on methodological issues and challenges using different techniques in qualitative research when conducting research with children and adolescents in health care. The session will consist of three linked presentations that
provide experiences of using video technique in observing children's expressions of actions;
provide experiences of using participatory methods such as drawings and pictures to encourage children to tell about their perceptions on a specific theme; and
provide experiences from focus group interviews with children and adolescents.
The concluding discussion will focus on methodological issues related to children's competence to bodily and verbally express their wishes, experiences, motivation, and feelings when using these techniques. Also, research findings from these techniques will be discussed. Furthermore, ethical considerations and the researchers' interpretations of the children's perspectives are issues demanding reflections.
The Use of Focus Group Interviews With Children and Adolescents
Marie Golsäter
Jönköping University
Karin Enskär
Jönköping University
According the Convention on the Rights of the Child, children and adolescents have the right to be heard in matters concerning them. Focus group interviews is a useful way to voice children's and adolescent's perspectives. The interaction that occurs in a focus group can contribute to new dimensions of a topic from the participant's perspective and contributes to the exploration of perspectives that might remain undetected in one-to-one interviews. Focus group interviews might also encourage children and adolescents to express their own view instead of answering in a way they believe the interviewer wants them to answer. One disadvantage could be that those not comfortable taking part in groups may choose not to participate or might have no chance to express their experiences. This presentation will demonstrate the methodological issues revealed during focus group interviews with children and adolescents regarding their experiences of health and life style dialogues with the school nurse. Issues such as performing focus groups interviews with participants in various age groups, the size of the group and the use of mixed or unisexual groups will be brought up.
The Use of Drawings and Pictures as Participatory Methods to Encourage Children to Tell About Their Perceptions on a Specific Theme
Maria Harder
Mälardalen University and Karolinska Institutet
Karin Enskär
Jönköping University
Maja Söderbäck
Mälardalen University
The movement from doing research on children to do research with children within the health care area challenges researchers to use participatory methods. The use of drawings and pictures are such participatory methods that allow children to share their perceptions and experiences of a situation. Drawings and pictures are familiar from children's everyday lives and suit their competence. Furthermore, the use of drawings and pictures facilitate the interaction between the child and the researcher. To let children make drawings about a specific theme and tell about them announce the children as experts and that their perceptions and experiences are valuable. The use of pictures makes a theme well defined for the children and will make it easier for them to associate and talk unconstrained. The combination of various participatory methods in one data collection might contribute to detailed descriptions of children's perceptions about a phenomenon. This presentation will demonstrate a combination of participatory methods that have contributed to grasp children's perceptions of various situations as for example going through a vaccination. The presentation will further bring up methodological issues related to the use of participatory methods and the analysis of grasping children's perceptions with respect to their competence.
The Use of Video Technique in Observing Children's Expressions of Actions
Maja Söderbäck
Mälardalen University
Maria Harder
Mälardalen University and Karolinska Institutet
Video technique is found to be useful in qualitative research when the interest is to explore young children's expressions of actions in situations where they participate as actors with parents and health care professionals. Through this technique the whole situation and the child's varying and detailed expressions are captured. Thus the use of video provides the opportunity to capture the child's subjective perspective. The researcher's role is to be objective and follow the child in the course of the situation without interference. Further, the video technique allows the researcher to study a child's expressions several times during the analysis, and to reflect and validate with coresearchers. However, the interpretation of the children's expressions of actions needs to be guided by the intention to understand the children's perspectives. This presentation will demonstrate issues related to the use of video technique when observing children three to five years of age during health visits in a Primary Child Health Care situation and in a care procedure involving venepuncture. Further, discussion concerning analysis of the gathered data with respect for children's competence to bodily and verbally express their wish, experiences, motivation and feelings will be brought up.
Narrative Inquiries of Life-Threatening Illness
Increasing numbers of people are living with life-threatening illnesses, including cancer, end-stage renal disease (ESRD), and HIV/AIDS, often in the face of uncertain illness trajectories. People with serious illness live in-between the promise of treatment and the threat of recurrence or progression of disease, and yet this experience is not well understood. In this symposium we will explore findings from a CIHR-funded narrative inquiry exploring how people living with life-threatening illness story and re-stor(y) their lives. Building on our previous work, we will address (a) story lines of life-threatening illness, including findings from a thematic analysis; (b) representational symbols of life-threatening illness as identified by 31 participants; and (c) methodological tensions through examination of the metonymic spaces of narrative analysis.
Metonymic Spaces of Narrative Analysis
Anne Bruce
University of Victoria
Laurene Sheilds
University of Victoria
Rosanne Beuthin
University of Victoria
Kara Schick Makaroff
University of Victoria
Anita Molzahn
University of Alberta
Keilli Stajduhar
University of Victoria
The third presentation in this symposium will explore some of the metonymic spaces in narrative inquiry. Metonymic analysis is less commonly used in qualitative research. This research team uses the concept of metonymy indicated by “( )” to address the space in-between opposites that are inherently associated and yet together, open multiple meanings and possibilities. We will specifically address four metonymic spaces that we have encountered in our analysis process: (1) homogeneity ( ) diversity, (2) outsider ( ) insider, (3) reader ( ) text, 4) illuminate ( ) obscure. Homogeneity ( ) diversity refers to the space between what is shared and what is unique. Outsider ( ) insider refers to the space where people, including researchers, can have insider and outsider knowledge of the illness experience. Reader ( ) text addresses the interpretive process of knowing or being aware that each of us reads text differently and that each reading constitutes a re-stor(y)ing or re-interpretation of the data. Illuminate ( ) obscure relates to the dynamic nature of experience where by focusing on any one aspect of experience both foregrounds the experience and conceals other aspects. From a methodological perspective, our research team is exploring and developing ways to portray findings that keep the dynamic nature of text alive and portrays the unfolding/constructing/changing nature of peoples' stories.
Representational Symbols of Life-Threatening Illness
Kara Schick Makaroff
University of Victoria
Rosanne Beuthin
University of Victoria
Laurene Sheilds
University of Victoria
Anita Molzahn
University of Alberta
Anne Bruce
University of Victoria
Keilli Stajduhar
University of Victoria
Research findings often rely primarily on the spoken and written word. Incorporation of visual data within research may contribute understanding of experience other than what may be fully expressed via language. In this study, participants were asked to bring a representational symbol that portrayed their experiences of living with life-threatening illnesses. In the second interview, participants were asked to reflect on the meanings that the representational symbol held for them. Metaphoric analysis of participants' representational symbols was used to understand how participants construct and narrate unsay(able) aspects of their illness experience. Analysis provides insights into what is concealed and revealed through metaphor, what is left out, how language materializes experience, and the impact of metaphoric language for people living with the experience of life-threatening illness. This method offers individuals a new or different opportunity to tell their stories. In this presentation we will provide examples of representational symbols, describe the participants' meanings of representational symbols, and articulate some of the strengths and challenges of using visual analysis in qualitative research.
Story Lines of Life-Threatening Illness
Laurene Sheilds
University of Victoria
Anita Molzahn
University of Alberta
Anne Bruce
University of Victoria
Keilli Stajduhar
University of Victoria
Kara Schick Makaroff
University of Victoria
Rosanne Beuthin
University of Victoria
The purpose of this narrative inquiry was to explore people's stories of facing life-threatening illnesses and how liminal experiences affect their understandings of health and living within the context of cancer, end-stage renal disease (ESRD) and HIV/AIDS. Thirty-one participants took part in three in-depth interviews over 3 years. Findings reveal that people's experiences of illness are continually changing. Participants make sense of the uncertainty of life-threatening illness through narratives that serve particular purposes at different times. Participants use narratives to communicate information/experience, manage the responses of others (including health care providers), and foreground what is important. These narratives are rich in content and elucidate the process of stor(y)ing and re-stor(y)ing. The narratives also highlight the complexity and at times ineffable nature of liminal experiences of serious illness. From this disrupting experience, participants encounter pivotal questions related to meaning and purpose of life, and their own identity within illness. This presentation will delineate the findings from thematic analysis and demonstrate the significance of metanarratives (e.g., medical, survivorship, stigma of illness and death) that shape and define people's experiences. These findings challenge assumptions that health narratives are complete, unified, and enduring and show that narratives are fluid, polyvocal, and full of contradiction. The thematic analysis portrays the multiplicity of voices and tensions that permeate people's narratives, and in this way, the thematic analysis is dialogical and multilayered.
Utilizing Phenomenology as a Novice Researcher: Staying True to Method?
Three separate thesis research projects are presented with unique patient groups and different phenomenological approaches. Each presentation covers the reason for choosing phenomenology, the evolution of the method during the project, and whether each researcher would utilize that particular phenomenological approach again: first, the lived experience of making decisions for women dying of advanced cancer utilizing bracketing; second, the experience of living with addiction where the researcher self-disclosed personal experience; third, the experience of young widows where the researcher was a participant. Researcher understanding and application of phenomenological method influenced the interview process and analysis or interpretation of the data. This symposium offers participants the opportunity to discuss how different approaches contribute to nursing research and furthers the understanding of the phenomenological method.
Researcher as Study Participant: A Discussion Using Heuristic Inquiry
Marilee Lowe
Saskatchewan Institute of Applied Science and Technology
The death of a spouse is a profound and life-altering event, and evidence supports the fact that young women who are widowed experience unique challenges. The purpose of studying young widows was to understand the meaning of spousal bereavement for individual participants. The research tradition of phenomenology was chosen, and the guiding question became “What is the lived experience of spousal bereavement for young women?” Five themes emerged following inductive analysis of interview transcripts conducted with five women who were under the age of 45 at the time of their husband's death: (a) “Losses,” (b) “Who Am I?,” (c) “Staying Connected through Memories,” (d) “Living through the Firsts,” and (e) “Support Systems.” The evolution of the understanding of phenomenology and specifically the approach of heuristic inquiry will form the basis of this presentation. Traditional phenomenology requires that the researcher separate herself from the phenomenon in order to be able to objectively analyze and understand the experience of the participants. Conversely, heuristic inquiry addresses the question from the perspective of the researcher being intimately acquainted with the topic and, seeking to understand one's own experience; becoming a coresearcher with the participants. This unique experience provides for richness in understanding the phenomenon which may not be gained by any other method or approach. However, there are numerous challenges that arise when the researcher is also a study participant. This session will offer participants the opportunity to discuss the pros and cons of heuristic inquiry as an approach to phenomenology.
Descriptive Phenomenology: The Best Methodology for the Advanced Cancer Experience
Natasha Hubbard Murdoch
Saskatchewan Institute of Applied Science and Technology
This thesis research explored the lived experience of women with a known terminal cancer diagnosis having to make decisions and the impact of those decisions on relevant others (family and the health care team). Research exists on making decisions during the cancer experience, including styles, information, technology, and influencing factors. However, a gap exists in the literature regarding the experience of making decisions. Conversational interviews were conducted with five women and three relevant others for each woman: her primary nurse, her oncologist, and one significant other. Participants also offered journals, e-mails, and letters of their memories of the experience. Phenomenology was the best approach for this underresearched idea. This presentation uncovers the exploration of descriptive phenomenology; from the initial proposal defining bracketing through the formality of data collection, the structure of analysis (using the lived existentials of temporality, spatiality, relationality, and corporeality), to the writing process which evolved out of data tables. For the women, the data revealed four themes of the lived experience of making decisions: (a) control, (b) influence, (c) normalcy, and (d) vulnerability. Along with analysis, a short narrative, from the participants' aggregate interviews, was offered in the writing to reveal the essence of the lived experience in a way that the results and discussion could not. Participants in this session are offered opportunity to debate the comparison of descriptive versus interpretive phenomenology and whether descriptive was the best approach for this topic.
Increasing the Level of Understanding About a Phenomenon of Interest Through Self-Disclosure
Gaylene Sorochuk
Saskatchewan Institute of Applied Science and Technology
Lacking in the gambling literature is the subjective perspective of female gamblers' experience accessing help for problem gambling. The purpose of this thesis research was to elicit female problem gamblers' perspectives on access to services for problem gambling. A qualitative, descriptive, exploratory study design was used. The direct source of data and key instruments were personal interviews, a questionnaire, and the researcher. Through participant interviews, increased understanding, and identification of the facilitators and barriers experienced by the participants when accessing services was illuminated. Using a focused interview guide ensured a given set of topics were covered in the interview. The questions from the interview schedule provided a structure for guiding categorization and subsequent analysis and interpretation of the data. Stigma and shame are reported issues with female gamblers. In an effort to engage and support participants and obtain meaningful data with female gamblers in this study, self-disclosure was utilized; the researcher had accessed addiction services in the past though not related to gambling. The researcher's personal and theoretical experience in the addictions field assisted in both the closeness of the experience and an understanding of the particular event. It was necessary for the researcher to be open to the perceptions of the participants rather than attach her own meaning to the experience. This presentation will focus on both the way in which self-disclosure aided in developing an egalitarian relationship with participants and measures taken to control (albeit not eliminate) researcher bias.
Poster Presentations Preventing Parents from Their Own Perceptions of Prevention
Maryam Amin
University of Alberta
Arnaldo Perez
University of Alberta
Objective: A community-based participatory research was employed to qualitatively explore the perceptions of a group of new immigrant and refugee parents about children's oral health and prevention of caries. The ultimate goal is developing a culturally appropriate oral health promotion program to reduce dental decay in children in high-risk populations.
Methods: A total of 81 new immigrant and refugee parents participated in 12 focus groups. Participants were recruited from Multicultural Health Brokers Coop, a nonprofit organization serving newcomers in Edmonton. Focus groups were conducted in participants' original language. The interview guide was modified as the research progressed.
Results: Our analysis demonstrated visible differences among the participating communities, which confirmed the necessity of customizing preventive strategies to meet the needs of each community. Aspects such as parents' cultural beliefs and level of knowledge about oral health and dental services, their attitudes toward prevention, and their perceived barriers to optimum dental care were identified as being important to be addressed in any health promotion program. Parents in our study were either prevention-oriented or treatment-oriented. The emphasis placed on prevention seemed to be related to health values and practices as well as a strategy to avoid costly dental treatments. Parent also appeared to overestimate their ability to detect dental problems and they tended to simplify oral diseases in young children. The contradiction between parents' feeling of being capable of detecting dental problems and taking their child to a dentist only when there is a problem was identified as the key barrier for parents to provide timely care for their child's oral health.
Conclusion: While prevention is a key to maintain children's oral health, the level of parents' awareness of self-limitations and their inadequate information and skills to address issues related to prevention remain as an important area that requires further investigation.
REDI Model of Relocation Pathway for Persons With Dementia and Their Family Caregivers Moving to a Retirement Residence
Faranak Aminzadeh
The Ottawa Hospital
Frank Molnar
The Ottawa Hospital
William (Bill) Dalziel
The Ottawa Hospital
Linda Garcia
University of Ottawa
Relocation to a care facility is a major life event for persons with dementia (PWD) and their family caregivers. This poster presentation describes the stages of decision making, critical incidents, roles/responsibilities, and support needs of PWD and their caregivers during a move to a retirement residence. The study adopted a prospective qualitative design. Data were gathered during separate in-depth baseline and follow-up interviews with 16 PWD and their caregivers. A grounded theory approach was used to guide data analysis. For most participants in this study, the relocation decision making involved a complex, dynamic, highly interactive, and more or less consensual process which extended from only a few months to several years. Despite the uniqueness of each case, a model emerged that captures the experiences of the majority of participants. The REDI model is marked by four stages of residential decision making and transition. These are “Recognition,” “Exploration,” “Destabilization,” and “Implementation.” During these stages, family caregivers assumed multiple important roles, including “Noticing,” “Monitoring,” “Information/Help Seeking, “Initiating,” “Deferring,” “Picking Up the Slack,” “Realizing,” “Pushing/Taking Over,” “Searching & Selecting,” and “Making the Move.” Relocation to a care facility is not a concrete time limited event, but an ongoing process of decision making, change, and adjustment for PWD and their caregivers. The findings have important theoretical and practice implications and inform supportive strategies to optimize the process and outcomes of the relocation trajectory for both PWD and their family caregivers.
Communication and the Casualization of Nursing: An Interpretive Ethnography
Mary Batch
Queensland University of Technology
Literature tells us that the nursing profession is becoming increasingly casualized, with around 50% of the Australian nursing workforce being employed either part time or on a casual basis. However, it is not understood what impact nursing casualization is having on organizational communication and health care provision. Literature suggests that communication is a vital component of organizational effectiveness and communication needs of employees must be met to ensure positive organizational outcomes. Existing work models though appear to be designed to favor the full-time worker, and there is evidence of marginalization of casual and part-time workers by their full time colleagues and managers. This project has endeavored to identify, describe, and understand the effects of casualization on communication within a division of a large metropolitan acute health care facility. It has explored the relationship between casualization and the communication culture via an interpretive ethnographic approach. Methods used include, participant and nonparticipant observations and field note records of fulltime, part time and casual nurses within four units, for 2-hour periods at a time. Audiotaped and transcribed semistructured interviews and focus groups have also been used to maximize data and facilitate understanding. Ethnographic analysis has been undertaken to develop concepts and themes, and the findings will be the subject of the presentation.
Life in the Later Years: Exploring the Meaning of Retirement Among Aging Adults With Intellectual Disabilities
Sarah Baumbusch
University of British Columbia
The purpose of this study was to explore the meaning of retirement to adults with an intellectual disability in older age. Background: Five adults between the ages of 50 and 60 years old participated in in-depth interviews on the subject of retirement. Four participants lived independently in the community, one participant lived with her mother. Two participants were male, and three participants were female. One of the participants had a permanent part-time job at a community living organization, three participants worked 3 hours or less per week in self employed arrangements, and one participant was not employed. Method: The study used a qualitative descriptive design. An interview guide was used which included topics related to retirement. Data were collected using semistructured interviews. Participants were asked about their expectations of retirement, what type of things might change as they got older, and what they thought was different for persons with a disability than for the general population. Data were analyzed to find content themes. Findings: Three key themes emerged: (a) the economics of retirement, (b) desire for choices in retirement, and (3c) changing relationships with aging parents, shaped the unique experience of this time of life. Discussion: With increasing life expectancy and deinstitutionalization, retirement is a new phenomenon for this population. Findings from this study illustrate the need for education about and acknowledgement of this major life transition for both adults with Intellectual Disabilities and those in their support networks.
Nursing Student Perspectives of Course Evaluation in Korea
Seung Eun Chung
Chungju National University
Miyoung Kim
Ewha Womans University
This study aims to identify nursing student perspectives of course evaluation. It may help to use effectively course evaluation in context of nursing education. Data were collected through focus group approach from June to August 2008. The participants were 28 nursing students who were homogeneous in age and background. The data were analyzed by using the constant comparative method. Three core themes were derived from the data. The first was a meaning of the evaluation, including a tool to gain access to their grades, a communication channel, a routine event expected at the end of a semester, an introduction of their own standards. The second was characteristics of the nursing students toward course evaluation, including their passivity, the problem-oriented training they have received, narrow-mindedness, close relationships with their professors, a conspiracy against the evaluation. The last was a motivation for significant evaluation, including explanation of the goals of the evaluation, feedback on the results, guarantee of anonymity, adjustment of question items, change of the time of the evaluation, ensuring a greater variety in evaluation methods.
Lived Experiences of Nurse Caring Behaviors and Attitudes by Women With Chronic Illness
Pamela Embler
University of Alaska Anchorage
How do women with chronic illness perceive being cared about or cared for by nurses? Caring is multifaceted warranting investigation to gain an understanding of its complexities. This study investigated women with chronic illnesses' experiences with nurses that shaped their perceptions of nurse caring behaviors and attitudes. This was a descriptive phenomenological study interpreted by Giorgi's procedural steps. Interviews were analyzed for patterns of similar descriptions. Participants were five women ages 18 and older with chronic illness recruited from the Alaska Heart Institute, Alaska. The results indicated that what is believed by the nurse to be an expression of caring is not always what is received by the client as caring. Five shared patterned descriptions were (a) experiences from past caring interactions influence future caring interactions; (b) caring reflects the nurse's ability to protect human dignity and safeguard humanity; (c) formulation of trust is dependent upon caring interactions; (d) collaboration among the client, the family, and the nurse is dependent upon caring interactions; and (e) caring interactions reflect the nurse's commitment to professionalism and career satisfaction. The implication to nursing practice is that the client population is transforming from one of acute illness and acute care to chronic illness and long-term care in the outpatient setting. The nurse-client paradigm must change to meet the needs of the client. Understanding perceptions of feeling cared about or cared for by nurses is essential if nurses are to meet clients where they exist on the illness continuum.
Information-Seeking Experiences of Pharmaceutical Policy Makers
Devon Greyson
University of British Columbia Centre for Health Services and Policy Research
Steve Morgan
University of British Columbia Centre for Health Services and Policy Research
Colleen Cunningham
University of British Columbia Centre for Health Services and Policy Research
For decades, social sciences research has investigated barriers to research uptake by public policy makers. In more recent years, a related genre of research has focused on “knowledge translation” between researchers and policy makers. However, a lack of behavioral and organizational theory sometimes undermines knowledge translation strategies from the outset, and promoters of “evidence based policy making” have been critiqued for not fully taking into account the context in which policy makers function. This exploratory study investigates the work-related information seeking experiences of key informants engaged in various aspects of pharmaceutical policy making. As part of a broader research priority-setting process, we conducted semistructured interviews with a purposive sample of 24 stakeholders in pharmaceutical policy making. Participants included: government and public agency employees, health professionals, patient/consumer advocates, and pharmaceutical industry employees/consultants. Embedded within a larger interview regarding needs and recommendations for pharmaceutical policy research was a critical incident portion centered around recall of a time of need for policy-relevant information. Data analysis is currently underway, utilizing descriptive qualitative methods drawing on grounded theory analytic strategies. Results will be compared with existing models of information seeking behavior, including Pettigrew and Leckie's Information Seeking of Professionals, to assess degree to which such theories apply and/or are inadequate to explain the information seeking experiences of pharmaceutical policy makers. Due to information-related norms particular to participants' work cultures, and to changes in information availability over recent years, existing theories of information behavior may have limited applicability in today's policy-making environments.
Midlife Lay and Professional Women Engage in Applying a Participatory Research Approach to Develop Nutrition Education Resources for Bone Health
Gail K. Hammond
University of British Columbia
Gwen E. Chapman
University of British Columbia
Nutrition education resources are key tools used by nutrition professionals to help people make informed food choices. A potential limiting factor in resource effectiveness is nutrition professionals' standard practice of developing resources in isolation of the intended users. Canadian midlife women's dietary intake of foods rich in calcium and vitamin D, two key nutrients for bone health, is less than current recommendations. Diet is a modifiable factor impacting bone health and nutrition professionals have a key role in providing effective dietary services to Canadians. Using a collaborative approach to develop nutrition education resources may produce resources that better match women's health needs. To this end, a collaborative partnership of midlife community women and nutrition professionals used a participatory research (PR) approach to develop two nutrition education resources: a bookmark style print resource and a website that combines women's personal stories with information about food choices, physical activity, and nutritional supplements. Qualitative interviews conducted at the conclusion of the project revealed varied ways in which all participants valued and used the final resources in their personal and professional lives. Reflective examination of the benefits obtained from, and challenges encountered in, this project suggests that a PR approach may have limited applicability in professional practice-based settings due to increased demands on time. However, adopting key elements of a PR approach by engaging in inclusive and collaborative activities with intended users of nutrition services may benefit nutrition professionals' practice of developing nutrition education resources.
The Lived Experience of the Person at Home Following Admission of Their Spouse to an Aged Care Facility: A Work-in-Progress Report
Lisa Hee
Queensland University of Technology
The aim of this presentation is to inform the audience of a study that identifies the lived experience of people whose spouse has been admitted into an aged care facility for permanent care. A hermeneutic phenomenological approach will be utilized, underpinned by the work of phenomenologist Martin Heidegger (1889–1976). In Australia the Australian Bureau of Statistics (2008) reveal that in 2003 there were 2.5 million carers of whom, 18 % (452,300) were aged 65 years and over. 83% of these older carers are caring for a spouse. It has been estimated that carers save the Australian economy $16 billion annually. Their role in the community is vital as they play a substantial role in terms of physical, social and economic needs for the current and future aging population of Australia. This trend is likely to be an international one due to the growing aging population throughout the world. The United Nations has identified that by 2050, the number of older persons in the world will exceed the number of young for the first time in history. Little is known about carers who face enormous challenges and changes to their existence once their spouse is placed into an aged care facility. This study will aim to inform carers, care staff, and other key stakeholders of new knowledge gained from the perspective of the carer, to better inform practices relevant to the carer. This presentation will report progress of the study including results from initial interviews held with the carers.
Transitioning of Internationally Educated Nurses (IENs) Into the Alberta Health System
Gina Higginbottom
University of Alberta
Shirley Mogale
University of Alberta
Australia, Canada, the United States, and the United Kingdom have sought to redress nursing workforce deficits via recruitment of internationally educated nurses (IENs.) Alberta Health Services recently undertook recruitment drives in Australia, India, the United Kingdom, and the Philippines, and the ethics of such recruitment drives are complex. The IENs from these countries face challenges regarding their transition into the new ethnocultural setting. To understand these challenges, a focused ethnographic study located within the interpretive paradigm was conducted. The study's aim was to understand and explore in detail the transition of IENs into the Alberta health system. Twenty two IENs were recruited as participants for this study through purposive sampling. Data were obtained through semistructured interviews which were held twice, at 3 months, the initial stage of transition, and at 9 months, when the IEN was becoming more familiar with the new cultural context and health care delivery systems. Key preliminary constructs from the semistructured interviews include discrepancy between nurses' expectations and reality, multifactorial barriers during transition, communication breakdowns at recruitments stages, and discriminatory practices. The semistructured interviews will be followed by ethnicity-specific focus group interviews, with the intention of sharing and validating the key constructs emerging from the semistructured interviews and to further explore the issues. Individual interviews with key-stakeholders have been conducted. The results will help optimize policy development regarding recruitment of IENs, and establish the professional and personal support mechanisms that are necessary for a smooth transition of IENs into the Canadian health care system.
Beliefs and Practices of Expert Respiratory Care Faculty on Critical-Thinking Learning: A Case Study
James Hulse
Oregon Institute of Technology
The development of critical-thinking skills during the professional training of respiratory therapists is imperative for good practice. This qualitative, single case-study identifies critical-thinking strategies and beliefs incorporated by the faculty in an academically strong program. These include faculty passion, well-planned curricula, and tying clinical experiences to classroom instruction as important motivational factors for students. Faculty believe the best teaching strategies involve the students in “learning by doing” activities that keep the students from developing an excessive dependence on them for learning. These activities include problem-based learning and techniques philosophically consistent with cooperative learning such as presentations in class, organizing and providing peer teaching, peer evaluation, and classroom discourse. The development of critical thinking is enhanced when program characteristics include adequate numbers of faculty, when instructors hold a graduate degree, and when substantial program prerequisites and high admissions standards are enforced. The role of the student and faculty in the development of critical thinking is represented metaphorically in a mathematical equation that describes the relationship between factors that govern nutrient exchange where mother and child meet in the placenta. The development of critical thinking results from the successful implementation of sound beliefs. An effective respiratory therapy learning environment has key features that correlate with those described by social learning theorists as occurring in the zone of proximal development. In addition to learn-by-doing strategies and techniques, faculty must focus on the motivation they supply as role models, and program characteristics.
Analyzing Evidence Hierarchies in Obesity Recommendations With a Complex Systems Lens
Lee Johnston
Simon Fraser University
Carrie Matteson
Simon Fraser University
Diane Finegood
Simon Fraser University
Recent reports to and by governments have produced long lists of recommendations to address childhood obesity. These recommendations are based on various levels of evidence including research, expert opinion, and community stakeholder engagement. A means of understanding the relative contributions and relationships between multiple recommendations, sources of information, and divergent evidence bases used to create action agendas may help decision makers effectively set priorities and optimize resource investments. We applied our complex systems intervention level framework (based on Meadows' places to intervene) to 170 recommendations made to fight obesity in Canada and the United States. Data were coded by two researchers according to the five levels of our intervention framework: paradigms, goals, system structure, feedback loops, and structural elements. The coded data were then analyzed according to the level of evidence on which the recommendations were based. Intercoder agreement was high (98%). Most recommendations (79%) were classified at the lowest level as “structural elements,” 8% were identified as “goals,” 5% as “feedback,” and 4% as “system structure.” Only one recommendation was considered at the highest level of “paradigm.” In strictly evidenced-based reports, nearly all recommendations were at the structural element level, whereas reports informed by stakeholder engagement had a greater distribution of recommendations at higher levels (20–50%). The strengths and limitations of our methodology for understanding this relationship and the subsequent implications for solving complex problems will be discussed.
From Confinement to Freedom of Living: Revealing the Life Stories of Those Leaving a Psychiatric Hospital
Hudson Santos Junior
University of São Paulo
Natália Salim
University of São Paulo
Dulce Gualda
University of São Paulo
Psychiatric reform is an internationally discussed issue. Its greatest challenge is to reconfigure the instruments that assist bearers of psychic disorders in their fight for social inclusion. This study sought to understand the meaning they attribute to the experience of mental disturbance and having undergone a deinstitutionalization process. This is an ethnographic study in which five collaborators, discharged from a psychiatric hospital, participated. They currently receive care in the alternative mental health network in Campina Grande, Paraíba, Brazil. Data were collected by oral history interview, participant observation, and field diary. The results are structured into cultural categories that depict events at different stages of the collaborators' lives, in which mental suffering arises with several facets. There are indications of dehumanization in the asylum model and of the tendency to alternative community-based care. It can be stated the methodological approach used, inserted into their social environment, was an important source for capturing their personal history and let everyday broader sociocultural contexts of its members' histories and representations be understood. Besides giving voice to the collaborators, so they might share their life stories, they became aware of their own experience of the illness and the transformations they are experiencing. Such data prompt reflection on psychiatric care, which may make producing more congruent care viable.
Trust and Functionality: Key Themes for a Personal Health Record for Prevention
J. William Kerns
Virginia Commonwealth University
Anton Kuzel
Virginia Commonwealth University
Alex Krist
Virginia Commonwealth University
Dan Longo
Virginia Commonwealth University
On average, Americans receive only half of indicated preventive services due to a host of patient, clinician, and system barriers. To assess factors related to use/non-use of MyPreventiveCare.net (MPC), a highly sophisticated prevention-focused interactive personal health record designed to promote 18 U.S. Preventive Services Task Force-endorsed services, we conducted a descriptive interpretive analysis of transcripts and field notes from focus groups of 14 MPC users, 14 who were invited but who did not use MPC, and 7 clinicians, from 8 practices in the Virginia Ambulatory Care Outcomes Research Network (VACORN). MPC gave patients direct access to the information stored in the electronic record of their primary care clinician, displayed tailored recommendations, provided links to online educational resources, and generated patient and clinician reminders. The major themes were Trust and Functionality. Subthemes for Trust included Information Security, Information Accuracy, and Clinician Trust (based on patient-clinician relationships) for information verification/interpretation and direction/advice. Patient-clinician relationships were crucial for Trust, and Trust was key for registration and acceptance of information accuracy. Functionality subthemes included Expectations, Benefits, Problems, and Suggestions. Additionally, patients want/expect medical technological interventions to be both state-of-the-art and comprehensive. While MPC has been shown to promote patient self-management and to extend clinician care outside of standard office encounters, its use by patients is not only directly related to functionality, but is also intimately linked to trust, based in large part on patient-clinician relationships.
Experiences “in the Field”: Analyzing, Explicating, and Reconciling Tensions Between Participatory Qualitative and “Standardized” Quantitative Approaches to Research
Koushambhi Basu Khan
University of British Columbia
Alexandra Mann
University of British Columbia
Joyce Lui
University of British Columbia
M. Judith Lynam
University of British Columbia
Qualitative and quantitative research methodologies draw on different assumptions about knowledge and the questions they seek to examine have different, but not incompatible, goals and aims. The quality of any research study is dependent on the quality of the research data gathered. Therefore, attentions to the processes of data gathering and factors that potentially influence participants' engagement with research are important considerations. This poster aims to illustrate some of the methodological challenges faced in a 3-year mixed-methods research study, Social Pediatrics Initiative (funded by CIHR), that incorporates different methodological approaches to explicating and tracing the development of an innovative community based model of integrated health care practice with marginalized populations living in a poor neighborhood. It aims to bring to the fore the challenges and tensions of enacting two diverse methods: (a) qualitative participatory interviews conducted from a critical theoretical perspective and (b) the administration of standardized survey questionnaires. Although researchers may take up different methodological approaches within the same research program, in this study we share insights gained as we sought to be “true” to the tenets of each methodological approach as they were enacted. We draw on field data and reflections of research assistants who conducted interviews and surveys with vulnerable populations in the field. The analysis illustrates the combination of skills and knowledge needed in order to “do” mixed methods research, the processes that need to be put in place to support the research endeavor and additionally offers insights to inform research “with” vulnerable populations.
The Experience of Female Street Sex Workers
Laura Klubben
University of British Columbia
Using a phenomenological methodology and a participatory approach, I will explore the experience of being a female street sex worker in Vancouver's Downtown Eastside. The field of counseling psychology could largely benefit from this study because we currently know little about the experience of being a female sex worker (FSW) and having this knowledge would largely enhance counselors' abilities to develop appropriate therapeutic approaches so that they could work with this population more effectively. A major problem to consider when researching an underserved population like FSWs is how to research such a group in a way that benefits the participants in addition to the researcher. Thus, I intend to “hire” 5 to 6 FSWs aged 19 and above to be both my research assistants and my participants. As my participants, they will tell or write about their experience of being a FSW and, as my research assistants, we will collaborate to determine the common themes or the essence of being a FSW. In the end I plan to not only publish a version of this study in a more literary form so that those FSW who are literate could read the narrative, but, also, since many FSWs are illiterate, I would like to audio record my publication and distribute the recordings to agencies that work with FSWs. I believe that FSWs could benefit from hearing others' stories by possibly being able to understand more about their lives while perhaps seeing connections between their thoughts and experiences and those of others.
Client Hope in Early Counseling Sessions
Denise Larsen
University of Alberta
Rachel Stege
Hope Foundation of Alberta
Hope is one of four common factors considered to account for the majority of client change regardless of the counselling approach employed (e.g., Hubble & Miller, 2004). Further, major counseling approaches often claim hope as an important factor without identifying how client hope is effectively addressed (Larsen & Stege, in press). Part of a larger project on hope in the counseling process, this study employed basic interpretive inquiry to examine where and how clients experienced hope during early counseling sessions (sessions 1–3). In this study, 10 clients were interviewed individually (using Interpersonal Process Recall [Larsen, Flesaker, & Stege, 2008]) while viewing a videorecording of their recent counselling session (n = 5 psychotherapists). During these interviews, clients identified interventions that impacted their sense of hope. Results suggest that clients experienced hope in various ways. Experiences of low hope were confined to sharing their problem stories. Hope-fostering experiences were clearly linked to (a) aspects of a strong therapeutic relationship, (b) interventions that invited clients to (re)view themselves as worthy human beings with purpose and capacity, and (c) shifts in perspective that expanded clients' understandings of situations, leading to a sense of new options and possibilities. In keeping with the transtheoretical perspective of common factors models, interventions experienced by clients as hope-fostering were eclectic in nature. Further, therapeutic relationship and hope were intimately entwined experiences for participants. Implications for practice and further research will be discussed.
Telling in the Shimmering. Perception of Parents or Caregivers About the Social Interaction of Their Prematurely Born Children
Margreet Luinge
Hanze University of Applied Sciences, Groningen
Ajay Bailey
University of Groningen, Population Research Centre
Inge Hutter
University of Groningen, Population Research Centre
Changes in the prenatal and neonatal intensive care of preterm babies have led to an increase of survival of preterm babies. Quantitative studies show that prematurity is often related with a delay in cognition, eating, breathing, moving, and communication. However, there might be more. Social ablities are important for the social, cognitive, and emotional development and for the psychological well-being of children. Social related aspects are social competence, social power (popular status or not), concern (goals and intention), appraisal (evaluation of the situation), and contagiousness (mimic and imitation). Social interaction is used as a theoretical framework. The goal of this study is to explore the perception of Dutch parents or caregivers about the social interaction of their 5-year-old premature born child (gestational age < 37 weeks). Five in-depth interviews (with parents or caregivers) were carried out and were analyzed according to grounded theory. Inferences were made, and returning aspects which emerged from the data were inserted in the interview guide in order to use in the next in-depth interviews. The results show that the following aspects seem to play a role in the social interaction of premature born children: appearance (length of the children), interaction partners (birth order), contact with grandparents, character (will strength), attention problems, imitation (especially of peers), and handicaps (hemi paresis). Furthermore, parents or caregivers were worried about the future development of their child. More interviews are needed in order to get saturation of information,
Living Within an Emancipatory Curriculum: An Ethnomethodological Inquiry
Maureen Makepeace-Dore
University of British Columbia Okanagan
Historically, nursing education has been delivered using models focused on training rather than educating students to critically know, be and do in nursing. One particular nursing curriculum termed “emancipatory,” is meant to liberate both students and faculty from the authoritarian restraints of empiricist and behaviorist models. This curriculum is based on the philosophical tenets of critical and feminist-informed pedagogy. Students and faculty interact within a climate of empowerment and emancipation which supports empowered learning, thereby facilitating clients to make informed choices for their own health care. Critique and praxis (reflection-in-action) are the processes used to grapple with underlying assumptions which can perpetuate tradtional practices leading to injustice and the hegemony that helps maintain the dominant dogmas in society. This inquiry involves the exploration of how nurse educators live within this emancipatory curriculum. Ethnomethodology informed by a critical feminist lens will be used to clarify their experiences. How do nurse educators socially construct their everyday knowledge as commonsense understandings to help them make sense of their realities? Accessing the meanings tied to contexts in which nurse educators teach can be explicated by understanding their actions. Working with the meanings, nurse educators construct, resist, or dismiss about their worlds will facilitate a more comprehensive understanding of the experiences. Tensions, contradictions, and ideological influences implicated in the enactment of critical pedagogical approaches may be illuminated during the process.
Mental Health Service User Perceptions Regarding Sexual and Relationship Need
Edward McCann
Trinity College Dublin
To date, very few empirical studies exist that investigate sexual and relationship issues and people who experience enduring mental health problems and less attention has been paid to the personal accounts of clients in this respect. The present study, carried out in the United Kingdom, involved 30 people who were asked about past and present relationship experiences and elicited hopes and aspirations for future sexual and relationship needs. A semistructured interview schedule was constructed that specifically addressed potential sexual and relationship concerns and was conducted face-to-face. The aim was to capture in-depth perspectives of people with a medical diagnosis of schizophrenia regarding intimate relationships. Following data analysis, categories, and subcategories emerged and were systematically organized. The key categories included perceptions of intimacy, establishing and maintaining relationships, sexual concerns and issues, sexual knowledge and understanding, stigma and self-esteem, family planning and parenting, views about prescribed medication, and formal and informal supports. The results of the study showed that people are willing and able to articulate thoughts, feeling, and beliefs in the area. The findings are presented and the implications in terms of mental health practice, education, and research are highlighted.
A Needs Assessment of Cancer Survivors at Fox Chase Cancer Center
Bonnie McIntosh
West Chester University
Stacie Metz
West Chester University
Andrea Barsevick
Fox Chase Cancer Center
This preliminary study aims to evaluate the needs of breast, lung, prostate, or colorectal cancer survivors treated at Fox Chase Cancer Center (FCCC). Cross-sectional, confidential, and voluntary surveys that assessed topics of concern for cancer survivorship were administered at FCCC to (a) cancer survivors with a diagnosis of lung, breast, prostate, or colorectal cancer; and (b) health care professionals treating lung, breast, prostate, or colorectal cancer survivors. To obtain sample characteristics, health history sheets were administered to cancer survivors, whereas, professional assessment sheets were administered to health care professionals. Focus group discussions were conducted with cancer survivors and health care professionals; however, one-on-one interviews were conducted with participants who were unable to attend the focus groups. The majority of the health care professionals (n = 10) were White (90%), female (70.0%), and working in their field for at least 5 years (100%), whereas the majority of the cancer survivors (n = 25) were White (59.1%), female (54.5%), married (84.2%), and holding a college/graduate education/degree (36%). Recurrence of metastasis, genetic issues, long-term effects of chemotherapy, and pain management were similar top concerns shared between both groups. Cancer survivors expressed a strong concern for financial issues, whereas health care professionals expressed a strong concern for insurance issues. Physical and occupational therapies, as well as complementary and alternative medicine were services that were desired from both groups. Additional topics of concern were expressed between cancer survivors and health care professionals. Results extracted from this assessment will be used to guide clinical care for cancer survivors at FCCC.
Pictures of Connection and Autonomy Through the Lens of Adolescent Girls With Disordered Eating
Colleen McMillan
McMaster University
The spoken word represents only one avenue in which to capture the meanings and lived experiences of adolescent girls with disordered eating. This research used photo voice as one of several modalities to elicit what the meanings of connection and autonomy meant to girls aged 11 to 14 identified as at risk for the development of an eating disorder by family physicians. Disposable cameras captured the complex, contradictory, and multiple meanings woven into the concepts of connection and autonomy as experienced by these girls over a 4-month time frame. In several instances, the camera became the voice of the participant, suggesting the fragility of the spoken word. Connection was experienced as tenous and embedded with food. Another research outcome was the degree of empowerment the camera offered to these girls. The camera assigned ownership to the otherwise silenced voice. In this way, images spoke the unspoken. Ongoing member check ensured trustworthiness. It also revealed spaces that verbal questions had failed to reach. The girls' increased sense of agency over the course of the research resulted in a photo exhibition that the girls organized. Employing photovoice supported these girls to pictorally speak of their experiences of connection and autonomy in a safe and nonjudgmental way and how these concepts relate to disordered eating. Had only verbal methods been used, important stories may have remained marginalized, perhaps lost in translation. Thinking outside of traditional methodologies extends the possibilities of understanding populations where language may have failed to convey important messages.
Construction and Analysis of a Communication Tool for Obese Patients
Thomas D. Merth
Simon Fraser University
Carrie L. Matteson
Simon Fraser University
Diane T. Finegood
Simon Fraser University
Support tools have been used to aid communication and treatment decision-making between patients and clinicians. Limited work has been done that specifically addresses obesity. This project will create a card-based tool for use by patients and clinicians that addresses an individual's challenges in making healthy lifestyle changes. The goal of informing patients about the complex causes of their obesity is to increase self-efficacy, which may lead to greater success in making behavior changes. Cards will be developed with statements which represent the complex causes of obesity based on the Foresight Obesity System Map and a literature review. Participants will complete semistructured interviews and report perceptions about the causes of their obesity and what they need to change. The deck will be reviewed with subjects to highlight the range of variables implicated in obesity. Participants will select cards which specifically address their situation, enabling them to focus behavior changes on a manageable set. Self-efficacy will be assessed before and after the presentation of the cards. A variety of qualitative methods are being explored for analysis of the semi structured interview data. This tool may raise self-efficacy in obese patients and lend better insight towards which factors in their lives need change. Participant feelings and beliefs associated with the exercise will aid in improving the tool. The cards may help individuals set priorities and goals, and may serve as a tool to help them surface which issues in a complex and sometimes overwhelming environment are salient for them.
Family Reintegration Following Guard Deployment
Deborah Messecar
Oregon Health & Science University
The purpose of this qualitative study was to describe veterans and families perceptions of their experience with family reintegration and the challenges reintegration presents among Guard members deployed since the start of the Afghanistan and Iraq conflicts. Participants included both National Guard members, and or family members of guardsmen deployed since 2001. A total of 45 participants, 26 Guard members, and 19 family members participated in focus group, couple, and individual interviews. NVivo 8 was used to analyze the interview data. Charmaz’ (2006) approach to coding data was used to organize and categorize the findings. Several skills that members develop while deployed later interfere with their ability to resume family life when they return home. These skills included seeking safety, getting things done in a hurry, expecting unilateral decision making, ensuring predictability in the environment, and stuffing emotions in order to get the job done. The objectives in this presentation are to describe the challenges families face with reintegration as a result of the conditioning that occurs during deployment due to the stressful environment. Implications are that individuals returning from deployment are often still experiencing the stressful effects of deployment and this can interfere with family life. Suggestions for strategies to screen for these kinds of problems will be provided. This research is sponsored by the TriService Nursing Research Program, Uniformed Services University of the Health Sciences (Department of Defense); however, the information or content and conclusions do not necessarily represent their official position or policy.
The Perceived Psychosocial Consequences of the Invisibility of Rheumatoid Arthritis in Young Adults
Sarah Minton
University of British Columbia
Rheumatoid arthritis (RA) can cause visible physical changes but often causes only invisible chronic pain, stiffness, and fatigue that result in disability. The invisibility of RA can have traumatic emotional, psychological, and psychosocial consequences. The purpose of this study is to explore the psychosocial consequences of the invisibility of RA as perceived by young adults. Three female participants were interviewed about their social experiences of living with RA. A semistructured interview guide that included overarching themes of disability, identity, stigma, and concerns was utilized. Preliminary data suggests that participants face difficulties in deciding when to disclose or not disclose their condition, experience struggles in living with an invisible condition, and in particular, express concern about their future abilities to become pregnant and care for children. At the end of the interview, all of the participants offered recommendations for improving care for young adults with RA.
An Exploration of the Culture of Prosecuting Violence Against Women (VAW) in South African Courts When the Health Record is Part of the Evidence
Shirley Mogale
University of Alberta
In developed countries like Canada, policies addressing violence against women (VAW) are geared towards the response of the criminal justice system to the crime. In developing countries, such as South Africa (SA), however, much are needed regarding policies that direct the culture of prosecuting of VAW crimes within the criminal justice system. The purpose of the study is to explore the culture of prosecution of VAW in SA when the health record is part of the evidence. Sensory ethnography is the method of choice. Data will be gathered using: observation of the prosecutors when prosecuting VAW cases, conversations with the prosecutors in order to explore the culture of prosecuting VAW, and analyzing relevant documents which are used in prosecution of VAW cases. The documentation of the sensory perceptions and receptions will happen simultaneously with data analysis. This will involve the analytic processes of identification of domains, making taxonomy, and componential analyses. Gaining insight into the prosecution of VAW will provide a scholarship that will enable nurses, as the cocreators of the health record, with the necessary knowledge require for it to be used as evidence in courts. The scholarship will also inform the policy makers in formulation of policies in which the health record will be endorsed as key evidence in prosecuting of VAW cases.
The Structure of Life in Narratives of the Oldest Old: A Phenomenological Study
Takeshi Nakagawa
Osaka University
Yukie Masui
Tokyo Metropolitan Institute of Gerontology
Yoichi Kureta
Showa University
Midori Takayama
Keio University
Ryutaro Takahashi
Tokyo Metropolitan Institute of Gerontology
Yasuyuki Gondo
Osaka University
It is classically known in gerontology that elderly people relatively maintain their subjective well-being in the face of objective adversities. Recently, it has been found that subjective well-being improves with old age and aging, controlling for related variables. Previous studies suggest that an unknown developmental perspective can elucidate subjective well-being in old age. This study focused on the oldest old, who are supposed to achieve this development. Descriptions of their psychological state will help us explore the developmental process. However, the lived experience in oldest-old age has not yet been well described in Japan. The aim of the study was to describe and understand the daily life experiences of the oldest old. Interviews were conducted with 8 oldest-old individuals: 4 women and 4 men living at home, able to communicate, and needing physical assistance. The authors used an interpretive phenomenological method to analyze these interviews. We focused on the meanings on physiological, social, and psychological dimensions of life, and classified the transcripts of the oldest old into meaning units. The following themes emerged from the analysis: “connectedness,” “nothingness,” “continuity,” and “creativity.” This means that life is being connected with the universe, changing into nothing, finding continuity in a changing situation, and creating possibilities to act in various adaptive ways. The authors understood that an oldest-old individual experiences a subjectively vital life in an objectively adverse situation. In future research, a transcendental perspective could help us understand the subjective meanings of the elderly and explore the psychological development in old age.
Students' Accessing Student Health Services: The Health Professionals' Perspective
Caitriona Nic Philibin
Trinity College Dublin
College students would appear to have a higher rate of mental health difficulties according to some studies. The literature suggests there is an increased risk of suicide in students; however, there is limited research in the Irish context to confirm or reject this theory. The current literature surrounding this phenomenon identifies a number of barriers from service provision to service accessibility along with the stigma and societal stressors encounter by individuals and families with mental health problems. From a strategic perspective the Department of Health and Children Health Strategy has committed to positive mental health and to contribute to a reduction in the percentage of the population experiencing poor mental health. The strategic aim is to support research and to work in partnership with the Health Boards and local communities to bring about positive change in attitudes and to provide a supportive environment for individuals who experience mental health difficulties. This may in part be achieved by increasing liaison between mental health services along with integrated and seamless community care services. The first phase of this study conducted a survey with health care professionals in, student health service settings and student counselors working in third-level colleges. The study used the Delphi technique, which explored the concept of how students access mental health facilities, the barriers experienced, and how professionals manage their caseload. The results of the survey will be presented.
The Reconstruction of a Profession: A Qualitative Sociohistorical Analysis of Medical Liability Rulings in Israel
Smadar Noy
Ashkelon Academic College
During the past 30 years, the amount of medical liability claims in Israel has increased dramatically. Moreover, it seems that rulings are changing in favor of plaintiffs. In trying to understand that phenomenon, I use thematic and narrative analysis while carefully reading medical liability rulings, legal writing and interviews with lawyers and judges. The analysis reveals a crucial change in courts' attitudes toward the medical profession: Whereas in the 1960s and 1970s, the courts idealized the medical profession (meaning that physicians were perceived as a moral community characterized with a sense of mission and dedication), since the 1980s, physicians were usually perceived as technical specialists and were thus judged by technical and bureaucratic standards, as well as by customer-service criteria. In trying to explain these findings, I offer a sociohistoric explanation, locating the judicial and medical professions in a wider sociopolitical field of “countervailing powers.” I suggest that the judicial and medical professions, which were established in Palestine during the first decades of the 20th century, were both marginal in the larger power-field. Furthermore, these two professions shared some common Ideological, epistemological, social, and cultural characteristics that connected them. A change in the power-relations began in the late 1970s. The legal profession gradually strengthened and reconstructed itself from a profession into a central social institution. As part of this process, courts have begun scrutinizing the medical practice. Moreover, they have begun reconstructing the meaning of medical profession itself.
The Experience of Moral Distress Among Psychology Interns
Simon Nuttgens
Athabasca University
Over the past 10 years an increasing body of literature has arisen that addresses the experience of moral distress. As an ethical concern that runs across many professions, especially those that involve health care and allied professions, moral distress is described as the experience of knowing the morally right thing to do, yet not doing it due to personal, social, or institutional constraints. Known effects of moral distress largely come from nursing research, where evidence points to many adverse effects, including emotional distress, job stress, physical health concerns, burnout, leaving one's job, leaving one's profession, disillusionment, and cognitive dissonance. Most importantly, moral distress is known to impede ethical action and diminish a positive ethical climate, thus increasing the likelihood of harm to clients/patients. As such, moral distress is of great concern to health care professionals, administrators, and consumers alike. The purpose of the current research (presently at proposal stage) is to examine moral distress among psychology interns, a group that is especially vulnerable to situations of moral distress given the inherent power differentials that encompass their role within the practice of psychology. This poster session will highlight the existing research and theory that guides the present research, as well as the proposed methodology (interpretive phenomenological analysis).
The Meaning to Nurses of the Work Process in the Intensive Care Units of a University Hospital in São Paulo State
Elaine Oliveira
State of São Paulo University—UNESP
Wilza Spiri
State of São Paulo University—UNESP
This study has resulted from the desire to comprehend how intensive care unit (ICU) nurses understand their work process. Nurses are the professionals on the team who concatenate the construction of live work as a result of their insertion in the work processes and their articulating potential on the team. This study aimed at understanding the meaning to nurses of the work process at the ICU of a university hospital in São Paulo state. The methodological trajectory is qualitative. Phenomenology enables the search for the essence and understanding of the meaning of the subjects' experience and includes three moments: description, reduction, and comprehension. Interviews were conducted by using the following guiding questions: What is the work process like to ICU nurses? What is it like to you to be an ICU nurse? The study participants were 12 nurses who worked at the ICUs. The analyses showed four categories: The work process in providing care/assistance at the ICU—The work process in managing/administrating the ICU—The work process in teaching/educating at the ICU—The personal dimension of work at the ICU. From the desire to unveil the meaning of the work process to ICU nurses, it was identified that nurses are fundamental in this process because they interact with all professionals on the team and coordinate actions as well as the care given to users. The study on the work process showed the complexity of relationships Understanding the human essence in relationships allows for care provision considering each individual's dimensions.
The Experience of Men Managing Fecal Incontinence
Cynthia Peden-McAlpine
University of Minnesota
Donna Bliss
University of Minnesota
The prevalence of fecal incontinence [FI] in community-living persons has become increasingly evident from epidemiological studies globally. A recent systematic literature review of population-based studies found that the prevalence of FI in community-living men across different age groups (5–8%) was only slightly less than that in women (7–9%). Little is known about how men's experiences of FI may differ from women's experiences. The aims of this study of community-living men with FI were twofold: (a) to understand the experience of men with FI from the perspective of the men, and (b) to elicit men's practical knowledge about self-care and management strategies for FI. Van Manen's phenomenological research methodology was used for this project. Ten men were recruited from a sample of prior work on FI. Unstructured audiotaped interviews were conducted and transcribed. Data were analyzed using van Manen's approach to analysis using the lifeworld existentials lived space, lived time, lived relationships, and lived body. The findings demonstrated that men attributed the worsening of their symptoms to aging and did little planning to control their FI. Men isolated themselves and avoided confined spaces because of concern of offending others with the odor. Changes in body image and self confidence were consistently discussed and health care providers were perceived as being of little help in providing symptomatic relief. Implications for nursing practice include formulating questions to assess the characteristics and nature of FI and structuring FI intervention and evaluation parameters that are sensitive to men's experiences.
Single, After All These Years… The Impact of Spousal Loss on Elder Widowers
Kathleen Pepin
Odyssey HealthCare
Coping with life's adversities requires strength of character. Widowhood is no exception. However, limited evidence exists that fosters understanding of the needs of men who outlive their wives. The purpose of this study is to interview widowed men to try to understand their thoughts and concerns regarding widowhood. A qualitative, hermeneutic-phenomenological study design was used. A significant level of independence was expressed by the widowers. Knowledge deficit concerning the location and availability of community resources was apparent, particularly among those participants who eschewed the rituals of religion. Social interaction and physical activity were preferred by most widowers, but each claimed that it was a personal decision. Of note, many expressed a significant desire for female companionship that was platonic and mutually supportive. There exists support for the independence of widowers in structuring their lives to suit their needs. However, for older men who have been married for a number of years, the absence of the companionship of their spouses leaves a void in their lives that they are not always prepared to fill. A concomitant desire for practical resources is not always met. The highly personal and individualized issue of spousal bereavement yields an abundance of data supporting the theory of stress in widowers. While depression was not a significant factor, further research may more clearly support its absence. In addition, the caveat of the potential relationship between positive bereavement practices and successful or happy marriages warrants exploration.
Migration, Minorities, and Maternity Services: A Three-Country International Comparison
Sarah Salaway
Sheffield Hallam University
Birgit Reime
Max Rubner Institut
Gina Higginbottom
University of Alberta
Heinz Rothgang
University of Bremen
Kate Gerrish
Sheffield Hallam University
Jule Friedrich
German College of Midwives (Bund Deutscher Hebammen)
Herbert Kentenich
DRK Kliniken Berlin
Beverly O'Brien
University of Alberta
Kuldip Bharj
University of Leeds
Punita Chowbey
Sheffield Hallum University
Zubia Mumtaz
University of Alberta
A collaborative research team from three countries—Canada, Germany, and the United Kingdom—undertook preliminary studies to gain understandings of and develop conceptual and methodological frameworks for comparing maternity care services as provided for and experienced by migrants/minorities. The objectives were to establish (a) a comprehensive conceptual framework informed by the three countries, (b) a detailed methodological approach to achieve meaningful comparison and operational feasibility across settings, and (c) an explicit operational structure enabling effective collaboration and active involvement of policy makers, practitioners, and users/consumers. A review of key policy documents and published literature, and e-consultation with selected experts, provided for exploration and documentation of relevant terminology and theoretical concepts. Consultation within practice settings and user groups, three country-specific workshops, and a joint-country symposium (in Berlin, Germany) generated substantial insights into the phenomena and provided guidance for comparative study across diverse settings. Several understandings were found to be instrumental for guiding frameworks: similar challenges of maternity service exist despite contrasting policy and practice; a qualitative metasynthesis will be appropriate for some countries offering adequate literature bases (United Kingdom and Canada), yet comprehensive qualitative study will be necessary to gather data from others (Germany); and effective mechanisms to engage service users, practitioners, and academic advisors will enhance methodological contributions (e.g., pertinence of research questions). This preliminary work suggests that there is significant potential for cross-country learning, although at present the availability of quality data and detailed understandings of migrant/minority maternity experiences and outcomes is shockingly absent across all three countries.
Understanding the Manitoba Medical Licensure Program for International Medical Graduates (MLPIMG): Exploring Accreditation Gap, Barriers, and Multiple Mentoring
Bosu Seo
University of Manitoba
Sukhoe Choe
University of Minnesota
The access of international medical graduates (IMGs) to the Canadian physician workforce has been a central issue in both health and immigration policy. Recognition of the foreign credentials of immigrants to Canada has been particularly controversial in the case of physicians. Although many contend that IMGs face artificially constructed barriers created by the profession, others emphasize the concern with the quality of their training. MLPIMG is a one-year program designed to enhance the training of IMGs and then provide a provisional license for work in an underserviced rural/remote community. It admits about 20 IMGs each year. However, there is limited information of how IMGs appraise the program and the extent to which they experience barriers to enter it and provide practice after graduation. Mentoring has been widely used in many organizations and acknowledged as a valuable tool for retaining employees and promoting career success. In Canada's dynamic and diverse health care environment, having a variety of different types of mentoring relationships that are comprised of both intraorganization and extraorganization networks, multiple mentoring, is perhaps indispensable to IMGs. We propose to conduct semistructured interviews of recent IMGs to understand what and how they encounter during and after MLPIMG and how multiple mentoring help them to assimilate in the profession. Interviews will be digitally recorded and transcribed in verbatim. NVivo 8 will be used for an analysis. We are recruiting physicians who have participated in MLPIMG since 2007, with the support from CME in the University of Manitoba. Preliminary results will be presented at the conference.
Stories From Vietnam
Debbie Shelton
Arkansas State University
Many studies exist that support posttraumatic stress disorder (PTSD) amid returning veterans from war. From past terms of “shell shock” and “combat fatigue,” the term PTSD has risen to describe the effects of combat on soldiers who have experienced traumatic events related to warfare. Traumatic events may include an actual or potential threat to one's physical or mental well being. Up to 15% of soldiers returning from the Vietnam War, Persian Gulf War and Iraq War present with PTSD compared to 1% in the general population confirming that involvement in wartime activities significantly increases the risk of PTSD. Veterans from the Vietnam War bridge the gap between the first appearance of the disease process and the common occurence that is now widely discussed among war suvivors. In this grounded theory study, I will analyze taped interviews of Vietnam infantry veterans with self-reported PTSD who saw combat in Southern Vietnam between 1968 and 1972. The interviews will take place during their annual reunion. Informed consent and issues of confidentiality will provide unique challenges as the numbers attending the reunion are smaller each year. The purpose of the study will be to discover the veteran's process of identifying their own early behavioral changes that they viewed as abnormal personality characteristics and what led them to seek symptom relief. Results of the pilot study will be presented. Ultimately, the results will be utilized to assist Vietnam veterans in identifying symptoms of PTSD and helping them find treatment.
Patient Perspectives of Tobacco Use Management in Smoke-Free Grounds Hospitals
Nicole Shopik
University of Alberta
Annette Schultz
University of Manitoba
Candace Nykiforuk
University of Alberta
Margie Kvern
Winnipeg Regional Health Authority
Barry Finegan
University of Alberta
Smoke-free hospital grounds are the newest strategy to address tobacco use within health care settings. Protection from second-hand smoke is the primary goal of these policies, which commonly include a provision of additional resources to address tobacco dependence during hospitalization. Anecdotal evidence suggested patient's tobacco dependence was not being addressed. In this study we explored patient perspectives of how tobacco use is managed within hospitals with smoke free grounds policies, which uncovered unintended policy consequences. This qualitative descriptive study is part of a larger study conducted at two Western Canadian tertiary hospitals. Findings draw on 82 semistructured interviews with patients (44% current, 37% former, 19% never smokers) to explore experiences and expectations related to tobacco dependence during their hospitalization. Study results suggest that assessment of smoking status was inconsistent, withdrawal symptoms were inadequately addressed, there was limited to no support for cessation efforts, when patients left the hospital to smoke there were significant patient safety and mobility concerns identified, and there was a lack of policy enforcement. In an absence of clear tobacco dependence treatment protocols, beyond the availability of nicotine replacement medications, the proactive policy intentions of addressing tobacco dependence are unachieved and patients are exposed to significant risk. It is imperative that hospitals and health authorities build capacity among medical staff to effectively address this unintended consequence. With this affirmative action, health providers can capitalize on the teachable moment that hospitalization offers for tobacco intervention.
Writing an Effective “Methods” Section for Research Proposals: Bettty Crocker Has the Recipe
Jeffrey Smith
Creighton University
Writing a research proposal is a requirement for almost all graduate degree programs in the United States. For many graduate students writing their first research proposal in graduate school, the task is daunting. Identifying a research title, problem statement, research purpose and question complicates the matter for many first-time research students/proposal writers. This presenter will discuss a strategy employed in an introductory graduate Research Methods class that helps some students develop a quality “Methods” section. The use of a Betty Crocker cake mix box clearly demonstrates the purpose, the ingredients, and the sytematic “how to” in order to replicate the picture seen on the front of the box. The Methods section in research writing presents the systematic “how to” replicate the study, just as the recipe does for the cake. Students' understanding of the purpose and precise writing required in the Methods section has yielded improved Methods sections and more quality “qualitative” research proposals.
Determining Nurses' Understanding and Use of Quality Indicators and Patient Safety Data
Bridgette Thom
Memorial Sloan-Kettering Cancer Center
David Rice
Memorial Sloan-Kettering Cancer Center
Judy Graham
Memorial Sloan-Kettering Cancer Center
Nancy Kline
Memorial Sloan-Kettering Cancer Center
Using grounded theory methodology, this study explores the ways in which nurses understand, and prefer to receive, data and other information related to quality assurance and patient safety. As accrediting bodies and regulatory agencies increase the dissemination requirements of quality indicators (e.g., patient fall rates and pressure ulcer prevalence) to staff, the nursing leadership committee of a comprehensive cancer center sought to determine the most useful and meaningful means of communication of such information to staff. The study team, comprising representatives from the divisions of nursing research and nursing quality management, conducted semistructured interviews with focus groups of nursing administrators, unit managers, clinical staff nurses, and assistive personnel. Questions, which were developed by the study team and validated by representatives from the hospital-wide quality assurance and patient safety departments, focused on nurses' perceptions of quality indicators, both in terms of definition and usefulness in practice; nurses' understanding of regulatory requirements as related to patient safety and quality assurance; and nurses' appreciation of the relationship between staffing levels and patient safety and overall quality of care. Transcripts of interviews and research team notes were coded in three phases, open, axial, and selective, in accordance with Corbin and Strauss. Initial findings suggest that the preferred method of dissemination varies both by nursing role and nursing practice setting. As such, the quality assurance department is adapting its strategies for communication and will attempt to conduct follow-up interviews to assess progress.
Do Not Intervene When They Are Close to the Destination: A Way of Providing Dignified Care to the Chinese Elders in Hong Kong
Mimi M. H. Tiu
The Open University of Hong Kong
Simon C. Lam
The Open University of Hong Kong
Winnie-J. H. W. Chik
The Open University of Hong Kong
Fiona W. K. Tang
The Chinese University of Hong Kong
With an increase of the aging population, it is foreseeable that more elders are required to receive nursing care. Dignity is an essential value of nursing practice. However, little is known about how care can be provided to contribute to the elders' sense of dignity. This hermeneutic phenomenological study aimed to unravel the meaning of dignified care from the elders' perspective. A purposive sampling strategy was used to conduct this study. Fourteen in-depth, unstructured interviews were used to generate the data. Interviews were audiotaped, transcribed, and analyzed using van Manen's (1990) phenomenological method. Allowing the elders to die with dignity was the overarching theme from the interview. The participants perceived that dying naturally without having any life-sustaining treatment is considered dignified dying. By giving them any form of life-sustaining treatment, their sense of being dignified was being intruded on. It is the matter of adding years to life or adding life to years. In certain ways, although the health professional can add years to life, by respecting the wills of not having unnecessary prolongation of life, perhaps life can be added to those years. Do not intervene with the elders when they are close to their destination is definitely a way of providing dignified care. The findings of this study can contribute to the development of strategies in providing dignified care. In addition, the results also provide a basis in proposing the use of advance directive in Hong Kong.
Dynamic Case Study Portal: Facilitating the Integration of Multiple Types of Evidence Into Decision-Making and Research
Muriah Umoquit
Cancer Care Ontario
Peggy Tso
Cancer Care Ontario/University of Toronto
Victoria Hagens
Cancer Care Ontario
Mark Dobrow
University of Toronto
It is increasingly understood that a wide variety of types of evidence are beneficial in the development of population health decisions. This evidence is produced not only by researchers but also by practitioners and project managers themselves, and much of it cannot be found in published or publicly available sources. A key factor in improving access to evidence and the effective application of evidence of all types, therefore, is the establishment of links between research and decision-making at more than just the “product” phase of each process. The Dynamic Case Study (DCS) portal, hosted on The Canadian Centre for Applied Research in Cancer Control (ARCC) website, will be designed to improve the availability of unpublished and not easily accessible material related to current issues in cancer control and facilitate the exchange of ideas and information between researchers and decision-makers, both within and across jurisdictions. DCS acknowledges the nonstagnate nature of cases, continuously updating available material on topic areas that have been chosen by decision makers. Centralizing unpublished and not easily accessible material into a searchable internet database is a unique approach to knowledge translation and dissemination of relevant and timely qualitative evaluation findings. This project, currently in its development stage, would be of interest to decision makers and researchers in cancer services and policy, including frontline practitioners and nongovernment and voluntary organization program coordinators.
A Study Evaluating a Set of Interventions for Preventing Substance Abuse Problems in Canadian Aboriginal Youth
Hendricus A. Van Wilgenburg
Dalhousie University
M. Nancy Comeau
Dalhousie University
Pam Collins
Dalhousie University
Sherry H. Stewart
Dalhousie University
We partnered with 10 Aboriginal communities across Canada to support the creativity, health, and well-being of youth and help meet the needs of young people who may be involved in problematic behaviors that adversely affecting themselves, their families, and communities (e.g., substance use). Through community engagement, we created and evaluated an evidence-based cognitive behavioral skill development program informed by First Nations and Inuit youth. The personality-and motivation-matched interventions were grounded in the wisdom and teachings of Elders and cultural advisers. Results of qualitative process and outcome evaluation are reported. Implications for improving the health and well-being of Canadian Aboriginal youth will be discussed.
Parents' Experiences of Balance in Everyday Life
Mineko Wada
The University of British Columbia
Catherine Backman
The University of British Columbia
Susan Forwell
The University of British Columbia
Wolff-Michael Roth
University of Victoria
James Ponzetti
The University of British Columbia
Life balance is receiving increased attention in studies and theoretical models promoting healthy lifestyles. Despite extensive study, the construct of balance is typically situated in specific frameworks focusing on, for example, merely paid work and family areas, or social roles. Using these frameworks delimits an understanding of other balance perspectives that may be unique to individuals. Further, such frameworks may impose a specific idea of balance as essential to a healthy lifestyle on those who perceive balance differently. A broader exploration of how people experience balance is warranted to better understand variation in balance perspectives. The aim of the study is to describe how people experience balance in everyday life. The study involves interviews with employed parents with at least one child under 6 years old, on the assumption that they must manage multiple activities and demands on daily basis. The research design is informed by a phenomenographic approach. Using purposeful and snowball sampling methods, the study to date has recruited 11 heterosexual couples from a metropolitan area. Both partners in the couple were individually interviewed twice to talk broadly about their everyday life. Interviews were audiotaped and transcribed verbatim. Transcribed interviews are being analyzed to uncover parents' descriptions and perceptions of balance and the situations in which it arises. The preliminary findings highlight illustrative balance perspectives and life situations including relationships and labor division. The study will suggest social support and tips for employed parents that may ultimately enhance their health and well-being.
Challenging the Boundaries of Practice Knowledge
Matthew Walsh
Charles Sturt University
Physical therapists are expected to be well informed in their interactions with patients within a context of evidence-based practice. The explosion of research and information in recent years challenges physical therapists to select and make sense of whatever knowledge is most valuable for patient care. In this research we show that Advanced Orthopedic Physical Therapists (AOPTs) demonstrate a dynamic and open stance towards knowledge not constrained by the categories of evidence based practice. The practice knowledge of AOPTs is shaped by personal and professional experiences in combination with more conventional (propositional) forms of knowledge. The idea of phronesis (or wise action) is a powerful and flexible means of explaining the practice knowledge used by AOPTs amidst the current complexities of the clinical environment. Rather than seeing the advancement of practice from a purely technical rational approach, phronesis allows us to see the importance of tactful, reflective action and reasoning in developing practice knowledge. AOPTs develop and test their practice knowledge, through a dynamic ongoing balance between action and reflection. This balance between action and reflection shows that AOPTs are always interpreting and reinterpreting their practice knowledge in the light of practice itself. The driving force is the ethical concern to provide the best care for each individual patient. How these therapists negotiate the current complexity of practice is of value, not only to Physical Therapists, but to any professional faced with the challenges of reconciling the technical rational approach demanded by evidence based practice with the everyday realities of practice.
Author Index
Abonyi, Sylvia, 398
Adam, Paul, 392, 393
Adams, Mary Anne, 334
Amin, Maryam, 406
Aminzadeh, Faranak, 334, 407
Arthur, Anne Barbara, 335
Ateah, Christine, 335
Audulv, Åsa, 357
Austin, Wendy, 365
Aveline, David, 336
Ayo, Nike, 336
Babinec, Patricia, 337
Backman, Catherine, 392, 393, 428
Bailey, Ajay, 415
Baksh-Griffin, Maureen, 387
Balise, Debra, 352
Balneaves, Lynda, 384
Barsevick, Andrea, 417
Basnyat, Iccha,
Batch, Mary, 407
Baumbusch, Sarah, 408
Beuthin, Rosanne, 402, 403, 404
Bhandari, Shreya, 382
Bharj, Kuldip, 423
Bhattacharya, Aruna, 338
Billay, Diane, 372, 373
Bishop, Danielle, 338
Bliss, Donna, 422
Bloemer, Neusa, 398
Boswell, Suzanne, 387
Botnick, Michael, 341
Bottorff, Joan, 375
Boyce, Michele, 356
Bradley, Sandra, 346
Brennan, Arthur, 339
Bruce, Anne, 402, 403, 404
Brummell, Stephen, 339
Brussoni, Mariana, 340, 376
Buchanan, Marla, 340
Bullock, Linda, 382
Butler, Mary, 341, 349
Buxton, Jane, 341
Callender, Stella, 356
Campbell, Emma, 394
Caplan, Wendy, 372
Cecchin, Maggie, 346
Chambers, Catherine, 341
Chapman, Gwen E., 410
Cheema, Dataar Kaur, 359
Cheng, Wen-Yun, 342
Chepuka, Lignet, 354
Chik, Winnie-J. H. W., 427
Chilemba, Winnie, 354
Chimwaza, Angela, 354
Choe, Sukhoe, 424
Chowbey, Punita, 423
Chung, Seung Eun, 408
Clark, Alexander M., 395
Collins, Pam, 428
Comeau, M. Nancy, 396, 428
Copley, Jodie, 394
Coser, Larissa, 341
Cott, Cheryl, 370
Cox, Helen, 363
Cox, Susan, 342
Cox, Susan M., 392
Cox, Susan M., 391, 392
Crockett, Corinne, 343
Cunningham, Colleen, 409
Curley, Lynn, 355
Dacher, Joan, 343
Dalziel, William (Bill), 334, 407
Dastjerdi, Fay Mahdieh, 344
Davidson, Sarah, 345
Davis, Kristina, 374
De Bellis, Anita, 346
Dejman, Masoumeh, 346
DeLuca, Jane, 347
Derrett, Sarah, 341
Dobbins, Maureen, 362
Dobrow, Mark, 427
Dow, Clare, 352
Driedger, S. Michelle, 358
Duncan, Amanda, 347
Durrant, Joan, 335
Eaves, Yvonne, 348
Edwards, Marie, 335
Edwards, Nancy, 362
Ekblad, Solvig, 346
Ellins, Jo, 389
Embler, Pamela, 409
Enskär, Karin, 401
Entwistle, Vikki, 351
Fairbank, William, 349
Ferlatte, Olivier, 349
Ferrari, Manuela, 350
Finegan, Barry, 425
Finegood, Diane, 412
Finegood, Diane T., 418
Ford, Katharine, 350
Forgeron, Joan, 356
Forouzan, Ameneh Setareh, 346
Forwell, Susan, 428
Foster, Kim, 351
France, Emma F., 351, 352
Friedrich, Jule, 423
Fukuyama, Katherine, 335
Garcia, Linda, 334, 407
Garon, Maryanne, 352
Gastaldo, Denise, 367
Geneau, Robert, 390
George, Anne, 340
Gerrish, Kate, 423
Giles, Michelle, 377, 378
Ginez-Gonzales, Yvonne, 382
Godderis, Rebecca, 353
Golsäter, Marie, 401
Gondo, Yasuyuki, 420
Gott, Merryn, 385
Graham, Judy, 426
Greeff, Minrie, 354
Greyson, Devon, 409
Gualda, Dulce, 412
Gualda, Dulce Maria R., 383
Guerin, Pauline, 346
Gutteridge, Robin, 373
Hagens, Victoria, 427
Hall, Julie, 354
Hamedani, Atyeh, 365
Hammond, Gail K., 410
Han, Christina, 376
Hancock, Sara, 342
Harder, Maria, 401, 402
Harun, Al Rasyid, 400
Hayden, Michael, 384
Hebblethwaite, Shannon, 355
Hee, Lisa, 410
Higginbottom, Gina, 339, 356, 411, 423
Higgins, Isabel, 377
Higuchi, Machiko, 374
Hillier, Brian, 356
Hon, Amy, 357
Hörnsten, Åsa, 357
Hulse, James, 411
Hunt, Kate, 352
Hutter, Inge, 415
Jardine, Cindy, 358
Jepson, Ruth, 351
Johnston, Lee, 412
Jonhson, Guillermo, 398
Junior, Hudson Santos, 383, 412
Jutterström, Lena, 357
Kalengamaliro, Mary, 374
Kang, H. Bindy Kaur, 359
Kaponda, Chrissie P. N., 374
Keenan, Louanne, 345
Kennedy, Michael, 359
Kentenich, Herbert, 423
Kerns, J. William, 413
Kgositau, Mabedi, 354
Khan, Koushambhi Basu, 414
Khan, Shamshad, 360
Khatun, Jahanara, 365
Killion, Cheryl, 360
Kim, Miyoung, 408
Kline, Nancy, 426
Klubben, Laura, 414
Kol, Emre, 360
Konradsen, Hanne, 361
Kosny, Agnieszka, 361
Kothari, Anita, 362
Krist, Alex, 413
Kululanga, Lucy, 354
Kureta, Yoichi, 420
Kurtz, Donna, 363
Kuzel, Anton, 413
Kvern, Margie, 425
Kwok, Cannas, 363
Lam, Simon C., 427
Lampley, Tammy, 364
Landreneau, Kandace, 364
Larsen, Denise, 365, 415
Lehn-Mooney, Mary, 382
Levy, Jennifer, 365
Li, Linda C., 392, 393
Liaschenko, Joan, 378
Linsley, Paul, 366
Lit, Sunjiv K., 359
Livingston, James, 366
Loeki, Enggar Fitri, 400
Longo, Dan, 413
Lopez Huerta, Jose Alfredo, 367
Lopez, Karen Dunn, 348
Lowe, Marilee, 405
Lui, Joyce, 414
Luinge, Margreet, 415
Lundman, Berit, 357
Lynam, M. Judith, 414
MacEachen, Ellen, 361
Makaroff, Kara Schick, 402, 403, 404
Makepeace-Dore, Maureen, 416
Makie, Kawabata, 367
Mann, Alexandra, 414
Manyedi, Eva, 354
Marcantonio, Kristin, 382
Marshall-Lucette, Sylvie, 339, 357
Masui, Yukie, 420
Matteson, Carrie, 412
Matteson, Carrie L., 418
McCann, Edward, 416
McClunie-Trust, Patricia, 368
McCreary, Linda L., 374
McCrum, Carol, 368
McDonald, Michael, 342
McDonnell, Louise, 369
McIntosh, Bonnie, 417
McMillan, Colleen, 417
Merth, Thomas D., 418
Messecar, Deborah, 418
Metz, Stacie, 417
Miller, Anton, 376
Minton, Sarah, 419
Mitchell, Rebecca, 378
Mobar, Sonal, 369
Mogale, Shirley, 411, 419
Moll, Laura, 370
Molnar, Frank, 334, 407
Molzahn, Anita, 402, 403, 404
Momeni, Alireza, 370
Morgan, Steve, 409
Mulemi, Benson A., 371
Mumtaz, Zubia, 423
Murdoch, Natasha Hubbard, 405
Murray, Lee, 371
Myrick, Florence, 372, 373
Nakagawa, Takeshi, 420
Nematollahi, Pardis, 380
Newton, Benjamin J., 373
Nic Philibin, Caitriona, 420
Nolan, Marie, 383
Nonaka, Chiharu, 374
Norr, Kathleen F., 374
Noy, Smadar, 421
Nuttgens, Simon, 421
Nyberg, Jessie, 363
Nykiforuk, Candace, 425
O'Brien, Beverly, 423
O'Donnell, Maureen, 376
Ogrodniczuk, John, 376
Oliffe, John, 375, 376
Oliffe, John L., 359
Oliveira, Elaine, 422
Olsen, Lise, 340, 376
Ortiz, Lucenia, 356
Paliadelis, Penny, 377
Parker, Vicki, 377, 378
Parmenter, Glenda, 377
Parvizy, Soroor, 370
Paterson, Jan, 346
Peden-McAlpine, Cynthia, 378, 422
Pepin, Kathleen, 423
Peres, Hagit, 379
Perez, Arnaldo, 406
Persell, Deborah, 388
Phillips, Rachel, 379
Pieper, Barbara, 343
Ponzetti, James, 428
Poudrier, Jennifer, 398
Pritlove, Cheryl, 380
Radfar, Seyedramin, 380
Raij, Katariina, 381
Raphael, Jon H., 373
Reid, Tamara, 381
Reime, Birgit, 423
Rice, David, 426
Richter, Solina, 356
Robertson, Sue, 382
Rose, Linda, 382, 383
Rossiter, Katherine, 353
Roth, Wolff-Michael, 428
Rothenberg, Richard, 386
Rothgang, Heinz, 423
Rothlingova, Zuzana, 373
Rouse, Michael, 362
Rudman, Debbie, 362
Rusk, Kerry, 372
Russell, Grant, 390
Saewyc, Elizabeth, 341
Safai, Parissa, 380
Salaway, Sarah, 423
Salim, Natália, 383, 412
Sarbit, Gayl, 375
Schultz, Annette, 425
Semaka, Alicia, 384
Seo, Bosu, 424
Seymour, Jane, 339
Shaibu, S., 354
Shakhshir, Patricia, 384
Sharps, Phyllis, 382
Sheftel, David, 340
Sheilds, Laurene, 402, 403, 404
Shelton, Debbie, 425
Sherman, Rose, 385
Shopik, Nicole, 425
Sibbald, Shannon, 362
Small, Neil, 385
Smith, Donna, 334, 386
Smith, Jeffrey, 426
Smitten, Jayne, 372
Snow, Nicole, 386
Söderbäck, Maja, 401, 402
Solorzano, Catherine, 352
Sorochuk, Gaylene, 406
Speraw, Susan, 387, 388
Spiri, Wilza, 422
Stajduhar, Keilli, 402, 403, 404
Stege, Rachel, 415
Steinberg, Malcolm, 349
Stewart, Sherry H., 428
Strumpher, Johanita, 388
Sumner, Jane, 389
Takahashi, Ryutaro, 420
Takayama, Midori, 420
Tang, Fiona W. K., 427
Tanner, Denise, 389
Taylor, Darlene, 341
Taylor, Jackie, 390
Thille, Patricia, 390
Thom, Bridgette, 426
Tiu, Mimi M. H., 427
Townsend, Anne, 391, 392, 393
Townsend, Susan, 393
Tso, Peggy, 427
Turner, de Sales, 343, 363
Turpin, Merrill, 394
Umoquit, Muriah, 395, 427
Van Borek, Natasha, 341
van Nikerk, Nelis, 388
Van Wilgenburg, Hendricus A., 396, 428
Vandall-Walker, Virginia, 395
Vassallo, Giovanni, 396
Vosilla, D. Ann, 397
Wada, Mineko, 428
Walsh, Matthew, 429
Walter, Bonnie, 346
Warren, Benjamin, 397
Weismuller, Penny, 382
White, Angela, 377
White, Kate, 363
Winckler, Mariana, 398
Wood, Karen, 398
Wotherspoon, Alison, 346
Wright, Susan, 354
Wyke, Sally, 351
Yonge, Olive, 372, 373
Young, Susan, 356
Youth Co-Researchers, 341
Zárate, Agustín, 367
Zuberi, Daniyal, 399
Zuhriyah, Lilik, 400