Abstract
Developing Decision-Making: From Student to Qualified Midwife
Nicki Young
University of East Anglia, Norwich, United Kingdom
The principles of ethnography were used to map the development of decision-making skills in student midwives during training and after qualification in the United Kingdom.
The 49 participants were a combination of students, midwives who had been qualified for less than a year, and midwifery mentors. The data collection methods consisted of focus groups, observations of practice, and individual semistructured interviews. Data analysis followed the principles of coding data, category, theme, and metatheme formation described by Garner (1991) and Ely et al. (1997).
The classification of the nature of professional knowledge and typology of nonformal learning created by Eraut (2000) was used to identify where explicit and implicit learning occurred. Very little knowledge related to decision-making was gained from formal teaching sessions in the classroom. The personal knowledge or “know-how” surrounding decision-making was acquired by the student working alongside the mentor in practice. Consequently, the relationship between learner and mentor and the quality of mentoring itself became strong influences.
Findings suggest that study participants use a number of strategies to learn the skill of decision-making. These strategies include seeing the outcome of care, predicting and anticipating events, pattern recognition, self and group reflection and the use of heuristics. Other factors that helped or hindered decision-making were evident, such as confidence and emotion management, getting to know the woman, and contextual and environmental influences. Vignettes were created to represent composites of the findings; these were presented to study participants in a focus group as a means to achieve respondent validation.
Research Electives in a Preregistration Honors Degree Program for Paramedics: Innovative Practice or Just Another Gimmick?
Julia Williams
University of Hertfordshire
In recent years U.K. ambulance services have been involved in widening health care provision within out-of-hospital unscheduled urgent care settings. As a result, paramedics have seen a significant expansion to their scope of clinical practice. To support these developments, it is essential to provide a solid academic foundation to underpin paramedic practice and clinical decision-making, and to foster understanding of evidence-based practice and research. In an attempt to increase paramedic students' motivation to “get to grips” with research methods and critical appraisal skills, an observational research elective was introduced into a preregistration paramedic science degree program allowing students to explore areas of health care that specifically interested them, either in the United Kingdom or overseas.
In a study informed by an interpretative methodology, 20 final year students participated in focus groups designed to explore their experiences of these electives and to evaluate this learning activity's relevance to their professional development. Rigorous thematic analysis facilitated identification of emergent themes, including Research awakening, Transition from topic “novice” to topic “expert,” and Development of a unique professional identity with interprofessional recognition.
Preliminary findings indicate overwhelming support for this initiative with participants describing success of the elective on several different levels. Students demonstrated renewed interest in finding out more about research processes as they wanted to learn how to effectively contribute to the construction of an evidence base to underpin professional practice. Overall, participants recognized that an increased knowledge level about research methods, in conjunction with development of critical appraisal skills, is necessary to sustain continued clinical progression within the paramedic profession.
Race, Resilience, and Resistance: Qualitative Data for Health Disparity Interventions for African American Women
Fleda Jackson
Atlanta Regional Health Forum
It is well established that economic and racial inequalities are significant factors for health disparities. What is less well understood are the acts of resistance and resilience within families and communities that are protective against the ill-health effects of poverty and racism across the lifespan. In this paper the author presents an analysis of extensive research on gendered racism and its link to adverse birth outcome and disparate chronic diseases among African American women living in Atlanta, Georgia. Her objective is to present analysis of qualitative data from interviews and focus groups describing and comparing the lives of research collaborators (participants) with their mothers to demonstrate generational exposure and resistance to the multiplicative stressors of race, gender, and class impacting health outcomes. Quantitative findings from the results of a unique measure derived from the qualitative data of the study, the Jackson, Hogue, Phillips Contextualized Stress Measure, will also be integrated into the presentation to advance an assets model steeped in the lived experiences of African American women as the foundation for health interventions expressly designed for African American women.
The Experience of Creating One's Life Vision: A Heuristic and Organic Approach
Angela Louie
Fraser Health
Creating a life vision for oneself can have a significant and profound impact in one's life. It can influence and direct choices, environments and occupations. Very little has been written in occupational therapy literature about this important aspect of life. In this study the author explores the experience of creating a life vision. Heuristic (Clarke Moustakas) and organic transpersonal (Clements, Ettling, Jenett and Shields) approaches were used. These emphasize the researcher's own in-depth exploration and experience of the topic as the primary data source, the telling of stories and a creative synthesis. This study also used in-depth interviews and life vision narratives from the researcher and 7 participants aged 30 to 70 years and a focus group to uncover experiences of visioning.
The findings indicate that there are two journeys that participants go on—an outer journey that is more worldly and linear, and an inner journey that comes from an intuitive place within and speaks to existential, spiritual and transpersonal domains of concerns—but that both of these experiences of learning are needed to create an integrated and deep sense of purpose and life vision.
Implications. Person-centeredness involves more than assessments, interventions, and treatments. Professionals might need to stand beside the person on their journey of discovery (after a spinal cord injury, after cancer). Therapists must also be willing to experience their own journey of discovery, to create their life visions, and to live their own dreams if they are to be a guide for others.
The Art of Occupational Therapy Practice: A Phenomenological Inquiry
Shelley Williams
Margo Paterson
Queen's University
Both the “art” and “science” of occupational therapy practice are essential to maintaining excellence in the provision of service. Although the current evidence-based climate favors the science of practice, artistry is intrinsic in daily practice, essential to high quality of care, and part of the clinical decision making process. A phenomenological approach was used to explore the meaning of artistry in occupational therapy practice. Data were collected from three occupational therapists using in-depth interviews. Approximately 14.5 hours of interview data were collected. Data management was facilitated through the use of NVivo software and Moustakas's method of analysis was employed to interpret the data. Both individual and composite portraits of participants were completed for analysis, providing an overall understanding of the experience. Rigor in this study was addressed through clarification of researcher bias, triangulation of data collection methods, debriefing, rich thick description, and member checking. Results illuminated the meaning of professional artistry to occupational therapists in their daily practice, indicating that professional artistry is at the very heart of occupational therapy practice, is central to the establishment of therapeutic relationships, and provides therapists with the greatest meaning in their practice. An alignment of personal and professional values provides the groundwork for the development of professional artistry and through this development of artistry there is a further valuing of occupational therapy practice. Findings from this study have implications for professional practice and recruitment to the profession. Explicating the art of practice fosters its development and expands occupational therapy's body of research knowledge.
Finding the Rhythm, Maintaining the Frame: How Children Manage Living with a Parent with a Mental Illness
Elaine Mordoch
University of Manitoba
This grounded theory study examined the perceptions of children living with a parent with a mental illness. The aim of the study was to construct a substantive theory to explain how children perceived and managed the experience of living with a parent with a mental illness. Data were collected through interview, participant observation, and field notes. Twenty two children between the ages of 6 and 16 who were living full- or part-time with a parent with a mental illness were interviewed. Theoretical sampling was used to identify incidents and participants; 10 children were interviewed twice. Data collection and analysis were undertaken concurrently. The core variables suggest that children focus their energy and time on finding the rhythm with their parents while maintaining the frame by establishing connections within a safe and comfortable distance between themselves and their parents. The findings suggest most children were comfortable in their homes and wished to be there, children and their parents coexisted in reciprocal relationships, and children were often managing their circumstances with little information about the mental illnesses. All of the children navigated emotional currents that affected how they were able to find the rhythm and to maintain the frame. Although these children valued their parents and were able to see their parents beyond the mental illnesses, they experienced painful emotions in managing their circumstances. The findings have important implications for nursing practice, education and research; as well as policies that address the larger issues that affect these children and their families.
Using Cooperative Inquiry to Improve Work Rehabilitation Practice
Brigitte Vachon
Jeannette LeBlanc
Université de Sherbrooke Marie-José Durand CAPRIT
Cooperative inquiry is a form of action research concerned with facilitating practice change through the self-critical examination of experience. Co-researchers get engage in cycles of action and reflection that can take many forms. A balance between reflection and action should be found to help participants look at their beliefs and theories critically and improve the quality of their practice (Reason, 1999). The aim of this paper is to describe the cycles of action and reflection of a cooperative inquiry used to facilitate the integration of work rehabilitation scientific evidence into occupational therapy practice. Eight occupational therapists who attended a 4-day workshop on evidence-based work rehabilitation were recruited to participate to a reflective practice group. The group met once a month during one year. Different learning strategies were used to progressively achieve balance between reflection and action.
Data were analyzed using the grounded theory method. Co-researchers engaged in five cycles of action and reflection. The first cycle was concerned with describing the client's work disability problem in a new way. The second cycle aimed at recognizing the gap between the new understanding and practice. The third cycle was related to exploring new evidence-based approaches. The fourth cycle allowed participants to explore their client centered-practice skills. Finally, the fifth cycle helped participants review their report writing and discuss their use of theoretical models. Not all participants achieved the same level of reflection and practice change but co-operative inquiry was a good strategy to facilitate the integration of evidence into practice.
Breaking Bad News: A Phenomenological Exploration of the Lived Experience of Doctors giving a Cancer Diagnosis
Gerard Tobin
University of New Hampshire
This presentation explores the process of giving a cancer diagnosis to patients by a group of hospital based doctors within the Irish Republic. The study was guided by the philosophy of Hermeneutic phenomenology, with data collected via unstructured in-depth interviews. This paper draws from a doctoral study that explored the giving and the receiving of a cancer diagnosis from the perspective of the recipient and healthcare professionals.
The focus of this presentation will be on eight doctors involved in breaking bad news to patients. The analysis of the narratives offered an interpretation of the phenomenon of giving bad news as an event in time which the doctor prepared for and often executed in isolation from other members of the multidisciplinary care team.
Emerging themes of Allied Affiliations, Antecedent Preparation, Disclosures and Authentication will be addressed. The findings are consistent with the literature addressing diagnosis and end of life issues and support a call for innovative, creative and collaborative ways of preparing future practitioners.
Understanding the phenomenon of the impact of giving a cancer diagnosis and the process of ‘telling’ the patient their diagnosis is important as we look to improving the way multidisciplinary teams collaborate and assist doctors in preparing for and delivering bad news to patients.
“Better Bodies, Better Selves: The Empowering and Transformative Effects of Competitive Dragon Boat Racing on Women Living with Breast Cancer
Rhona Shaw
University of Saskatchewan
What initially began as a research initiative to challenge unsubstantiated medical claims about women's physical limits posttreatment has emerged an increasingly popular and new kind of after-treatment support for women living with breast cancer. Competitive dragon boat racing is a physically intense cardiovascular activity requiring the development of upper body strength and stamina. For those who participate regularly, competitive dragon boat racing has had a series of positive and transformative effects on the bodies and the selves of women and in ways that have gone beyond that of the rehabilitative.
Interpretivist, constructivist, and feminist, this research initiative looked at the experience of competitive dragon boat racing among a group of women living with breast cancer in a city center in southwestern Ontario and involved 26 in-depth interviews and 4.5 years of participant observation.
Through their participation in competitive dragon boat racing, the women in the group interviewed not only regained (to varying degrees) aspects of embodiment problematized by their treatments for breast cancer but also transformed both their bodies and their selves into “better bodies and better selves.” This activity also allowed many to experience their critically ill, compromised, and problematized bodies as a site and source of pride, physical vitality, and pleasure rather than simply as a locus of disease, alienation, and distress.
Symbolic Meaning of Relocation to a Residential Care Facility for Persons with Dementia: “It's the End of an Era”
Faranak Aminzadeh
Regional Geriatric Program of Eastern Ontario
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 aimed at understanding the meaning of “home” and “relocation” for persons with dementia (PWD) at the point of relocation to a residential care facility. The findings are based on the data from baseline in-depth interviews with 16 PWD and the focus is on exploring the personal significance of relocation for the participants. Although the subjective meaning of relocation varied according to the participants' unique life history and current circumstances, four common themes emerged. The relocation to a RCF (a) symbolized the “end of an era” (i.e., the loss of family home and the many meanings, attachments, and activities associated with living at home), (b) signaled the overall “winding down” of their lives associated with the experience of old age and decline, (c) was associated with “rest” (unlike institutional settings, such as hospitals or long-term care facilities that are associated with “sickness” and “disability”), and (d) brought to the focus the complex interweaving of their lives with those of their family caregivers (relocation decision was placed in the context of altruism, care, and concern for the caregiver; loyalty and submission to the caregiver; or conflict and defiance). A better understanding of the deeper significance of relocation to a care setting for PWD helps develop supportive interventions to optimize the process and outcomes of housing decisions for PWD and their family caregivers.
The Meaning of Social Inclusion within the Context of Residential Aged Care: A Qualitative Investigation
Tess Knight
David Mellor
Deakin University
Our study was designed to help us come to an understanding of the experience of social inclusion within the context of aged care facilities. We were primarily interested in social inclusion and activity as experienced by older adults in residential care; however, we also explored this phenomenon from the perspective of those providing care for the residents. Our approach included conducting one-to-one in-depth interviews with residents and care providers of five hostels (low-level-care residential facilities) within metropolitan Melbourne, Australia, to tap into themes that were relevant to residents' lived experience of social inclusion. We found that, in spite of care providers' promotion of the value of social activities and their efforts to encourage participation, residents reported feeling isolated, compromised, and as though they were not “at home.” We question the focus on the provision of activities as an indicator of social inclusion that has emerged over the past few decades and suggest that this focus needs to shift to gaining a deeper understanding of the lived experiences of those in care. We suggest that the growing number of older adults who face the transition from their own home to a residential aged care facility could well benefit from such a shift in focus. We also suggest that such a shift in focus could guide us toward a more meaningful understanding of well-being and life-quality in this context.
Giving “Voice” to Families' Experiences of Living with a Pediatric Life-Limiting Condition: An Australian Story
Marie-Therese Proctor
Michael Stevens
Children's Hospital at Westmead, Sydney Australia
Sue Nagy
University of Technology, Sydney Australia
Bruce Lord
Libba O'Riordan
Children's Hospital at Westmead, Sydney Australia
Within pediatric health there are probably no more vulnerable children than those diagnosed with life-limiting condition and their families who care for and support them throughout their illness journey. Qualitative interview-based research provides an ideal means by which to tap into and learn from such families' illness journey related experience. This paper is a review of a large qualitative project that is offering a unique insight into the lives of 29 Australian families with ill children/adolescents (91 persons: mothers, fathers, ill children, well siblings, and extended family members). Their “voices” provide a glimpse into family life, illuminating how life limiting illness affects it and ripples out through the family system.
Drawing from the diverse project findings, the current paper focuses on families' experiences of and the strategies they employ for managing family life. The authors will consider a range of issues that seep through and affect families' quality of life, for example balancing often competing needs of family members. Factors that facilitate or, alternately, undermine their coping are also considered. Families' individual and collective narratives provide a crucial glimpse into the nature and quality of family life as families care for and support seriously ill children and adolescents. The study attests to the power of qualitative research to bring to “life” sensitive and emotive human experience, providing health care professionals an opportunity to examine and reflect upon how the quality and delivery of care can add to and or detract from the quality of families' lives.
The Lived Experience of Pediatric Heart Transplant Recipients
Samantha J. Anthony
David B. Nicholas
Anne Dipchand
The Hospital for Sick Children, Toronto, Canada
Lori J. West
University of Alberta
Heart transplantation (HTx) is an established therapeutic approach for children and adolescents with end-stage heart disease. While significant advances in both the surgical and medical management of HTx, have substantially improved outcomes for pediatric recipients, little research has focused on the psychosocial impact of the transplant process.
This grounded theory study explored the day to day experiences of pediatric HTx recipients, and sought to capture the transplantation experience from the perspective of those who live it and create meaning from it. HTx recipients between the ages of 12 and 18 years of age were recruited from a large Canadian pediatric transplant centre. A total of 28 adolescents participated in the study. Using qualitative interviews participants' posttransplant experiences were explored, including their perception of psychosocial adjustment at school and at home, relationships with peers and family, changes in physical appearance and physical functioning, and overall perceptions of quality of life. Preliminary findings suggest that the effects of undergoing HTx are pervasive and significantly impact self-perceived physical and social well-being. Although findings reflect that recipients exhibit adequate adjustment to the psychological stress of transplantation, they face challenges reintegrating into school and adjusting to the demands of a complex life-long follow-up treatment regimen. With the goal of improving the care provided to this unique clinical population, critical insights for health care professionals will be provided. A model enveloping the transplant journey and addressing the biopsychosocial impact of pediatric HTx will be presented, as will implications for future research.
Drug Treatment Outcomes Research Study: Results from the Qualitative Component
Matt Barnard
Stephen Webster
William O'Connor
National Centre for Social Research
In this paper the authors describe the findings from the qualitative component of the Drug Treatment Outcomes Research Study (DTORS), a national evaluation of drug misuse treatment in England. The qualitative component was designed to explore the factors influencing the effectiveness of treatment within the context of changing patterns of drug use and an expansion in criminal justice referrals. It used in-depth interviews to explore the views and experiences of providers and treatment seekers of structured interventions for people with significant drug problems. A sample of 32 front-line drug treatment workers were interviewed along with a sample of 44 treatment seekers reflecting a range of experiences and backgrounds. The paper presents a hierarchical model of treatment needs reflecting the pressures reinforcing dependency and discusses the range of barriers that were identified as undermining the ability of providers to meet the treatment needs of clients. The paper also presents a typology of five outcomes of contact with treatment services.
Interprofessional Students Reflect on Reflective Practice
Louanne Keenan
University of Alberta
Reflective practice can transform the members of an interdisciplinary team to new levels through critical thinking, self-analysis, and the valuing of each member of the team. This phenomenological study involved five students in a graduate-level course called Integrative Health Science Education. The graduate students were from nursing, physical education/physiotherapy, and basic anatomy and physiology. They submitted reflective papers that were based on their observations of five interprofessional undergraduate teams, which comprised six students from eight different health science disciplines. The teams participated in two different standardized patient (SP) scenarios: (a) a face-to-face encounter with the SP; and (b) an online interaction with the SP using a synchronous medium called Elluminate. The graduate students' reflected on their perceptions of (a) the roles that the SPs, the students, and their facilitators played in the two learning formats; (b) the graduate students' debriefing process with the interprofessional undergraduate teams; and (c) the reflections that the undergraduate students submitted on the online Discussion Board. The graduate students incorporated studies on reflective practice, which have been published in scientific journals from their respective disciplines. The graduate students also participated in individual, open-ended interviews at the end of their course to describe their perceptions of the reflective process. NVivo was used to code and analyze the reflective papers and the interview data. As educators in each of their health disciplines, the graduate students noted that their own reflective exercises gave them “extremely powerful tools” for mentoring their students through the reflective practice process.
An Exploration of Role Development in Health Care Professionals within an Interdisciplinary Team
Sarah Renton
Glasgow Caledonian University
Due to recent changes in the health and social care needs of patients/clients in the United Kingdom, nurses and allied health professionals are faced with the challenge of developing new roles and working within interdisciplinary teams (Department of Health 2000, 2002; Scottish Executive Health Department 2005). There have been few studies which explore how health care professionals (HCPs) are adapting to these challenges.
This research study aimed to explore role development in HCPs within an interdisciplinary team. Objectives of the study aimed to explore how HCPs perceive their own role within the team and how HCPs perceive the roles of other professionals in the team, and to identify the factors that influence development of HCPs roles.
A grounded theory approach was adopted (Strauss & Corbin 1998). Introductory letters to participate in the study were distributed to 38 HCPs working in an interdisciplinary team. The response rate from these invitations was 16 (44%), of which 6 were selected for interview. The use of semistructured interviews as a method of data collection was employed.
Through constant comparative analysis of data, four main categories emerged. These categories are advancing, adjusting, insight, and valuing. Overall, findings suggest that HCPs are moving forward within their role while undergoing a process of adjustment to new roles and new teams. Insight into each other's roles is identified by the HCPs as essential for working together. In relation to working closely together, trust and respect for each other's skills and knowledge is deemed necessary for effective team working.
Use of Qualitative Methods in Developing a Collaborative Change Package for Patient Safety and Clinical Pharmacy Services Improvements in the Outpatient Primary Care Settings
Asta V. Sorensen
Shulamit L. Bernard
Andrea A. Yuen
Molly Lynch
RTI International
Use of Collaborative Change Packages has become a popular approach in driving coordinated, organizational-level changes by national and governmental organizations in the United States. Change Package elements include strategies, change concepts, and action items that can be used to drive process changes. The purpose of this study was to develop a Collaborative Change Package to improve patient safety, health care quality and clinical pharmacy services in the outpatient primary care settings.
The Package was developed iteratively over a period of 8 months utilizing case study methodology. Ninety organizations were identified through a review of literature, web sites, and recommendations from experts. A third were selected based on availability of evidence, innovativeness of clinical pharmacy models, and geographic distribution.
Discussions with 186 pharmacists, pharmacy residents, physicians, nurses, and leadership were conducted through site visits at 34 organizations. Data included background materials and notes of discussions, end-of-day debriefings, and three interactive meetings. Data were analyzed using QSR NVivo 7 incorporating inductive analysis techniques to capture emerging themes and actionable steps within and across the sites.
The Change Package includes 6 core strategies, 14 change concepts, and more than 100 actionable steps that will drive process improvements by organizations participating in HRSA Patient Safety and Clinical Pharmacy Services Collaborative. These were validated and finalized at a Technical Expert Panel meeting attended by 30 clinical and national experts. Use of the iterative steps and qualitative data collection and analysis techniques outlined above were an efficient and effective approach to Collaborative Change Package development.
Knowledge Transfer in Family Systems Nursing: From Training to Clinical Practice
Fabie Duhamel
France Dupuis
Johanne Goudreau
Anne-Marie Martinez
University of Montreal
An increasing number of faculties and colleges of nursing include training in family systems nursing. However, many nurses report being challenged and question the feasibility of integrating family systems nursing into their clinical practice. In nursing, little is known as for the “process” of how nurses who have received training in advanced practice with families transfer this knowledge into their practice. The purpose of this presentation is to present the results of a study that explored how nurses transfer the knowledge acquired during a graduate course in family systems nursing to their clinical practice. Based on a grounded theory approach, a descriptive interpretative design was used. Participants were nurses who participated in a graduate course in family systems nursing and who had been practicing in a clinical nursing context for at least a year after the course. Data collection consisted of semistructured individual interviews with 12 nurses from various clinical settings. All interviews were transcribed for analysis. Results reveal that nurses start integrating the approach into their personal lives during their training program. Then, in their practice they progressively implement some of the assessment tools and basic interventions. They expressed their need for a mentor in family nursing, in their clinical context, to facilitate implementation of such an approach. Participants also perceive their colleagues' acknowledgment of the family care they provide which increases their work satisfaction. Based on the study results, recommendations will be offered to maximize the utilization of knowledge and skills in family nursing practice.
The Role of Solitary Music Listening in Women's Adjustment to Chronic Illness
Jennifer J. Nicol
University of Saskatchewan
Constructivist grounded theory (Charmaz, 2006) was used in this study to investigate the role of music listening in women's adjustment to chronic illness. Qualitative research has identified solitary music listening as a complex, meaningful experience used intentionally, and subconsciously, to meet goals and needs, including social needs (e.g., de Nora, 1999; Hays & Minichiello, 2005; Nicol, 2001); social support has been established as a coping strategy that facilitates adjustment to chronic illness (e.g., Symister & Friend, 2003). This study's purpose was to extend the current literature by exploring and theoretically clarifying the role of solitary music listening in women's adjustment to chronic illness. Women, diagnosed with physical conditions that were managed rather than cured, were interviewed on multiple occasions about their experiences with solitary music listening as a social process. Data were analyzed and a grounded theory was constructed using grounded theory coding (initial, focused, axial and theoretical coding), memoing, theoretical sampling, saturation, and sorting. Findings confirm participants' perceived experiences of companionship while listening to music and suggest a model for understanding how these meanings and actions are constructed. This constructed theory will be presented for discussion, and implications for both research and practice will be explored.
Demand and Nursing Intervention of People Who Related to Chemical Sensitivity
Nami Imai
Yoshiharu Imai
Mie University
One of the reasons that nursing support for patients with chemical sensitivity (CS) has advanced little lies in the fact that nurses' roles in the treatment of CS patients remain unclear. In this context, a CS-specific outpatient nursing department has been opened in Mie University to identify nurses' roles in this particular field through consultation services.
Between July 2006 and March 2008, 70 people received guidance from nurses of the outpatient nursing department via e-mail, phone, or through a counseling session, and their needs expressed to the nurses were analyzed. Thirteen patients who underwent counseling also received nursing intervention during the counseling, and their subjective symptoms before and after the intervention were evaluated on the QEESI scale.
The results revealed that CS patients expected nurses to provide them with “information on the condition and treatment for it,” “mental support,” and “information that could improve the safety of their daily living” as well as perform “activities to promote social understanding of their situation.” The nursing intervention improved subjective symptoms in eight CS patients.
These findings clarified the details of support CS patients' expected of nurses, and suggested that nursing intervention might reduce subjective symptoms in such patients.
The Impact of a Stroke-Related Communication Impairment: Exploring the Perspective of a Communicatively Impaired Group
Alex Clark
University of Alberta
Rosaline Barbour
University of Dundee
Sylvia Dickson
Glasgow Caledonian University
Gillian Paton
Royal Alexandria Hospital
Marian Brady
Glasgow Caledonian University
Approximately 1 million people in the United Kingdom have had a stroke, with an additional 130,000 experiencing their first stroke each year. Approximately 20% to 30% of these individuals will experience dysarthria, a condition that typically manifests in slurred, poorly articulated speech as a result of weakness, uncoordination, or paralysis of the speech muscles. The impact of dysarthria on the individual can be marked and is likely to extend to his or her family, yet very little is understood about these impacts.
We explored the perspectives of this communicatively impaired population on dysarthria, its psychosocial implications, and their needs using 24 in-depth, semistructured, qualitative interviews during the acute (2 months post onset) and formal rehabilitation stages, and as they continued with “life-after-stroke” (up to 34 months poststroke).
Irrespective of the severity of dysarthria (i.e. mild to severe) or perceived recovery, participants experienced changes in self-identify and significant, ongoing disruption to their relationships (both positive and negative). Participants spoke of considerable social and emotional implications and perceived and actual stigmatization. Getting “back to normal,” particularly in relation to their speech, was a prominent theme throughout the accounts. Failing to achieve this goal was associated with severe disappointment, frustration and even self-loathing.
A greater understanding of these issues from the perspective of this communicatively disadvantaged group will assist the development of relevant speech and language therapy interventions and which are informed by client identified priorities.
Writing Social Determinants into and out of Cancer Control: A Qualitative Analysis of Policy Practice
Stacy Carter
University of Sydney
Claire Hooker
Heather Davey
Centre for Values, Ethics and the Law in Medicine
In this presentation, we will ask: How are social determinants of health written into or out of cancer control? To complement a qualitative study of lay people's understandings of the risk of getting cancer, we sought to assess policymakers' constructions of cancer risk. We identified policy, strategy, or planning documents relevant to cancer control from English-speaking member countries of the Organization for Economic Co-operation and Development, the World Health Organization, and the International Union Against Cancer: Our purposive sample comprised 32 documents. While reading these, we noticed radical differences in the construction of social determinants of health, and became intrigued by the extent of the diversity. Thus this paper was born: a project in which the team cooperatively engaged in inductive, deductive, and abductive analysis, generating a new framework for understanding the construction and function of health policy which was informed by but went beyond current literatures on social determinants of health. In the sample, social determinants approaches and population health approaches were sometimes confused. We identified four ways of using social determinants (acknowledging, auditing, aiming, and acting) and five discourses relating social determinants to cancer risk (intrinsic, knowledge gap, individual, circumstantial, and nonintervention). Sociocultural factors were generally presented negatively, but New Zealand policies modeled a possible alternative. Using the empirical work, we were able to propose a matrix and a set of questions that health policymakers can use to interrogate policy as a process and as a product.
The Construction of Risk in Cancer Policy
Claire Hooker
Centre for Values, Ethics and the Law in Medicine
Stacy Carter
University of Sydney
Heather Davey
Centre for Values, Ethics and the Law in Medicine
This paper investigates the ways in which risk is constructed and represented in cancer policy documents. Part of a larger project that examines how lay people understand cancer risk, this paper explores cancer risk as it is put together in health professional and policy communities. We collected and analyzed cancer policy documents from the English-speaking OECD nations, the WHO and the UICC, identified through internet searches. I discuss our results in three sections: representations of cancer, information about cancer and policy responses. We found that although the policy documents identified a spectrum of risks and demonstrated sophisticated, biomedically informed concepts of risk, they tended to devolve on 6 behavioral “risk factors” in ways that elided uncertainty and minimized complexity. They largely excluded discussion of genetic, environmental, emotional, and social risks. I discuss the implications of these findings for health risk communication and for policy.
Factors Influencing Decision Making and Coping Regarding Contraception and Pregnancy Among Nursing Students
Eileen Cormier
Florida State University
Afua Arhin
Grambling State University
In this exploratory study the researchers used grounded theory methodology to identify and describe the decision-making processes and coping responses of eight African American nursing students who became pregnant. A qualitative approach was utilized as there is little known about the impact of pregnancy on nursing students' progression through their nursing program, even though nursing remains female dominated, and the nursing student population is in their childbearing years. Participants were recruited through the Student Affairs Office at a historically Black university and interviewed over a 4-month period. Using grounded theory methodology, data was coded and then analyzed for causal relationships with five interrelated themes emerging from the data. Participants reported inconsistent use of contraceptives yet experienced discovery of the pregnancy as highly traumatic. Participants also described the decision to keep the pregnancy as conflict ridden and difficult as a result of family values and religious beliefs and ultimately driven by maternal support. Maternal and faculty support was central to successful coping and progression in the nursing program. Findings of this study suggest that nursing programs need to become more pregnancy friendly to facilitate successful progression of those students who do become pregnant. This topic is of major significance for further research, given the current shortage of nurses as well as the aging nursing workforce. Promoting the successful progression and matriculation of nursing students, especially minority nursing students, will only serve to benefit the profession and the health care of the nation.
Parenting a Child with Autism: Shifting Parental Roles
David Nicholas
The Hospital for Sick Children, Toronto, Canada
This preliminary qualitative review examined the experiences of mothers of children with autism as well as family-based impacts of care over time. The needs and clinical manifestations of autism shift substantially over the course of childhood, adolescence, and young adulthood. In caring for their child with autism, mothers often play key and diverse caregiving roles.
As part of a larger study, focus groups were conducted with (a) parents of children with autism and (b) autism service providers, to identify issues and challenges faced by families in which a child has autism. The three focus groups comprised a total of 13 participants: 9 mothers of a child with autism and 4 service providers.
Findings included a range of experiences and challenges, over time, that face families in which a child has autism. Emergent themes demonstrated: (a) extraordinary maternal involvement in care, (b) negative impacts of autism on family functioning, (c) emotional strain experienced by families, (d) impediments to obtaining resources, and (e) continual shifts in autism-based experiences and needs over time.
Given the shifting nature of autism in the life of the developing child as well as mothers' key role in caregiving, greater knowledge about maternal and family experiences and shifts are integral in potentially improving developmentally based needs assessment, treatment planning, support strategies, and resource allocation. The study has important implications for understanding and ultimately enhancing maternal and family experience, which has a direct link to the care and outcomes of children with autism.
A Qualitative Metasynthesis of Coping Strategies of Parents with Children with Autism
Alyssa Weiss
Nova Southeastern University
First identified by Kanner in 1943, research in the area of autism shows the incidence of the disorder has increased from one child in 303 in 2000 to one child in 150 in 2007. These children display impaired communication skills, difficulty with social interactions, and restricted, repetitive stereotypical behaviors. Families with children with autism face many challenges as they seek to provide optimum treatment for their child. Some families cope better than others and manage to establish strong familial bonds and relationships while others struggle to maintain the family system. Research quantifying family coping has demonstrated whether or not a family copes with the situation however, this research does not identify the essence of how families cope.
This qualitative metasynthesis integrated coping strategies found across published research that parents with children with autism found useful with the intention of providing family therapists with this information in order for them to help families cope more effectively. A qualitative metasynthesis approach was used to identify and examine qualitative studies addressing coping strategies used by parents with children with autism published between 1980 to present.
Analysis of the content within the studies revealed eight themes that identified coping strategies that parents of children with autism found useful: (a) accurate information,(b)community services/support, (c) family support, (d) positive feelings, (e) religion,(f) social support, (g) spousal support, and (h) support groups. The results of this qualitative metasynthesis offered areas for further research and the development of practice interventions for marriage and family therapists.
Phenomenological Interviews: The challenges of Using a Single Question Method with People who Have Poststroke Communication Impairments
Maggie Lawrence
Glasgow Caledonian University
Maria Lucia Sadala
Universidade Estadual Paulista
Stroke is the second commonest cause of mortality worldwide and the most significant cause of disability in the United Kingdom. It is a chronic condition which has a devastating impact on the lives of individuals and their families. Although stroke is commonly perceived to be a disease of the elderly, 25% of stroke events occur in young adults (i.e., aged < 65), yet there is a dearth of research that has explored the experience of young adults.
This doctoral study explored the experience of young adults who have had a stroke and members of their families. The underpinning methodological approach was derived from the phenomenology of Merleau-Ponty. He understood humans as perceiving and understanding the world from an embodied perspective. His focus on the perceiving body fits well with the experience of stroke.
Ten young adults from Central Scotland and 11 of their family members took part in a series of one-to-one interviews over a period of 2 years. A single question interview technique was selected due to its congruence with the underpinning methodology. This method, in which no subsidiary or probing questions are used, enables participants to talk spontaneously about issues of greatest importance to them in a prereflexive manner, thus capturing the existential meaning of their experience.
In practice, this method elucidated a deeper understanding of the meaning of the experience from the participants' perspective. However, it also presented challenges and raised issues regarding the appropriateness of using this technique with participants who have communication impairments poststroke.
An International Educational Partnership in Nursing: A Partnering Relationship
Barbara Astle
As nursing works collaboratively to strategically address global health needs, understanding the processes to build and sustain effective partnerships will become increasingly important in the future. The author analyzed an established educational partnership between a Faculty of Nursing in Canada, and a School of Nursing in Ghana in the development of a master's of philosophy. The purpose of the study was to understand how the contextual features of history, culture, setting, decision making, and intercultural communication contribute to building and sustaining a successful international development partnership in higher education in nursing. Participants included nursing/medical educators, leaders, and administrators in Canada and Ghana, and Ghanaian nursing students who described how they perceived their experiences with this international partnership. A qualitative methodological framework guided the research process using case study research and participatory action research (PAR). The findings revealed three phases of the partnering relationship among the Canadian and Ghanaian partners. Further analysis of the data provided an in-depth understanding of the integral components, and elements which provided the framework for understanding what contributed to a mutually satisfying partnering relationship and a successful outcome. The presentation focuses on the three concepts of: ease of communication, sharing of power, and focus on capacity building which emerged as instrumental to goal achievement and are integral components of this partnership. Social and critical theoretical perspectives offered important insights into the relational piece of this partnership which will be discussed relative to the broader historical, social, political, and cultural contexts.
The Discourse of “Rang Kiat,” AIDS Support Groups, and Women Living with HIV/AIDS in Central Thailand
Pranee Liamputtong
La Trobe University
In this paper, I examine community attitudes towards women living with HIV/AIDS in Thailand at the present time. I also look at strategies employed by women to deal with any stigma and discrimination that they may feel or experience in the community. The paper is based on our larger study of the experiences of women living with HIV/AIDS and their participation in clinical trials in Thailand. Twenty six in-depth interviews with women living with HIV/AIDS in central Thailand were carried out during the fieldwork which was conducted in late 2007 and early 2008. I find that women living with HIV/AIDS still deal with stigma and discrimination in their everyday life. However, from the women's narratives, I also find more positive attitudes from local communities. Women deal with stigma and discrimination by joining and participating in HIV/AIDS support groups that have emerged in response to the AIDS epidemic in Thailand. I argue that women are not passive victims, but that they act in their own agencies to counteract any negativity they might encounter.
Following an Abnormal Mammography
Women's Waiting Experience during the Assessment Process
Chantal Doré
Frances Gallagher
Line Saintonge
Université de Sherbrooke
Ève-Marie Pouliot
Centre de santé des femmes de l'Estrie
Yolande Grégoire
Université de Sherbrooke
Many studies show that women experience stress and anxiety at different stages of the assessment process following a breast anomaly detected by the mammography. However, few studies have examined women's help-seeking strategies and support effectively received. The aim of this research was to describe women's experience and psychosocial needs while in the process of investigating abnormal results of mammography. A qualitative clinical research approach was conducted to explore this waiting experience. Semistructured, audiotaped interviews were conducted with 20 women aged 50 to 69, participating in the Quebec breast cancer screening program. Each participant was able to complete the description of her experience during a follow-up phone interview and by using a personal journal. The data were analyzed qualitatively using an analytical frame designed for the purpose and based on Huberman and Miles' model. The results of the analysis derive from a co-analysis, discussions, and exchanges within the research team members, which enhanced comprehension of the material gathered. Results give a general description of women's experience from their point of view, and a scope of their health care and social support needs. The focus of this communication is women's point of view on the experience of “waiting”; their personal coping strategies, and needs remained unanswered. In conclusion, we observe the absence of integrated health care services for these women. Therefore, it would be appropriate to explore ways to minimize the risk of women being left by themselves during this difficult life episode.
Health and Mental Health Concerns among Newcomers to Winnipeg
Tuula Heinonen
Esther Blum
University of Manitoba
Emigration to a new, unfamiliar urban center where one needs to learn how to survive often generates stress and discomfort. Newcomers to Canada require a range of instrumental and emotionally supportive resources from settlement and other services in order to begin the process of integration into a new environment.
In a recent study, newcomers (refugees and immigrants) described how concerns about settlement and integration as well as issues related to their home countries were challenges in Winnipeg. In addition to language barriers and a lack of understanding about the health care system, other concerns such as histories of trauma, current worries about family members that remained behind, and pressures to succeed in Canada posed problems.
This presentation will provide an overview of newcomer settlement issues and connections between immigrant and refugee health and mental health concerns, including gender differences in the process of settling in an unfamiliar urban location.
Factors Underlying Unintended Conceptions in Young Women in an Area of High Social Deprivation in the United Kingdom
Sally Brown
University of York
The United Kingdom continues to have the highest rate of teenage pregnancies in Europe, and the city of Kingston upon Hull has one of the highest rates within the United Kingdom. Reducing teenage pregnancy and lowering rates of young parenthood is a key priority for the U.K. government, with a 10–year national Teenage Pregnancy Strategy launched in 1999, and the Teenage Pregnancy Unit established to manage implementation of the strategy. Kingston upon Hull remains among the Local Authorities with the highest rates of teenage conceptions nationally, despite a strong local teenage pregnancy strategy and an active program of activity to improve access to sexual health services (including family planning) and to provide education to help young people resist pressure to have early sex.
This paper presents an exploratory study, carried out in Hull, which used focused interviews with 24 young women (aged 16–24) who had either recently had or were waiting for termination of pregnancy, to explore the factors leading to an unintended conception. The interviews focused on the participants' experiences of sex education, their awareness of and access to sexual health services, and their knowledge and use of contraception.
Presenting key findings around knowledge, access to services, decisions around contraceptive use, the influence of alcohol, peer pressure, and other significant factors influencing young women's use (or not) of contraception, the paper focuses particularly on gendered expectations about responsibility for contraception.
Holistic Health Learning in the Cultivated and Forest Gardens
Mirella Stroink
Connie Nelso
Lakehead University
The study involves a qualitative analysis of the process and outcomes of the Learning Garden program, which is being run in the summer of 2008 with two First Nations communities. The program seeks to promote health and well-being by blending experiential, outdoor learning in the cultivated and forest gardens with discussions and critical reflections on the interconnected meanings of nutrition, local foods, culture and health. Learning is viewed through the lens of the cyclical, interconnected, life- and health-sustaining garden, and is therefore profoundly place based, experiential, and holistic. Place-based learning (re)connects the individual with all levels of the human and biological ecology, grounding the person in the local bioregion, and in the history and culture of the community. By including critical reflection and dialogue on Western and Aboriginal values relating to food, nutrition, and health, this program aims to be a transformative learning process that helps each participant find a personally optimal balance between the Aboriginal and Euro-American cultures. Drawing on community knowledge and relevant literatures, the program involves a series of workshops that will be led by a community-based coordinator in each location. This research seeks to describe the holistic learning experiences of program participants as they unfold through the spring and summer. Data will be collected through participant observation in the workshops, informal dialogue, and storytelling as well as interviews, photo-visioning, and the building of local food maps. Key findings and implications for the Learning Garden program and health learning will be presented.
Photolanguage: A Unique Method for Diverse Applications
Ann Bessel
Valentina Kloosterman
University of Miami
Photolanguage is a unique qualitative method that has the capacity to stimulate and facilitate individuals' imagination, memory, and emotions. It provides an opportunity for one to articulate thoughts by “speaking through” black-and-white photographs using rich descriptions and imagery. Photographs can assist individuals convey inner thoughts and feelings by employing universal images chosen to spark emotions and cognitions in a wide variety of respondents in diverse settings, including medical, psychological and educational, and fields of knowledge such as evaluation and research.
This presentation describes the step-by-step process of implementing photolanguage, explores the possibility of uses of this innovative method for small group evaluation, and supplies data showing its potential benefits for evaluation and research. Thus, research findings from five exploratory studies in which photolanguage was implemented during different focus group activities will be presented. Our findings indicate that the use of photolanguage in small group evaluations facilitates participants' verbal interaction and provides an opportunity to build rapport and reduce anxiety and apprehension while eliciting richly metaphorical verbal responses. Also, it appears to help participants articulate hidden feelings, perceptions, and attitudes particularly those from different types of groups, including sensitive populations such as low literacy level and homeless families, and different sociocultural background, economic status, and gender. Attendees' involvement will be welcomed. In addition, materials and resources will be distributed.
Using Online Methodology in Qualitative Health Research: International Medical Graduates and Reflexive Racialization on the Net
Samantha Egan
Australian National University
This paper describes a project that utilized computer-mediated communication as a means of cyber-ethnography and sets out a brief overview of emerging methodological and ethical issues in online methodologies in qualitative health research.
The study was an attempt to locate the personal and professional discourses of overseas trained doctors, or International Medical Graduates (IMGs), who are undertaking Australian General Practice training. Through an anonymous online forum IMGs were engaged to discuss how their personal and cultural backgrounds informed their training and practice. This topic is one that has been largely researched from the top down as IMGs have been reluctant to speak out for fear of personal, professional, and government retribution. It was the intention that the online forum would provide a ‘safe’ space for IMG discussion. This paper overviews some of the limitations of the methodology, the legitimacy of using online techniques, and their potential for the future.
Improving the style and content of general practice consultations for older people with asthma: a mixed methods approach
Dianne Goeman
The Alfred Hospital/Monash University
Lena Sanci
The University of Melbourne
Robyn O'Hehir
The Alfred Hospital/Monash University
Simon Scharf
Caulfield General Medical Centre
Christine Jenkins
Woolcock Institute of Medical Research
Jo Douglass
The Alfred Hospital/Monash University
Recent figures released by Australian Bureau of Statistics confirm that people aged over 55 years are those most at risk from asthma death. As patient-centered health care (partnerships between patients and their clinicians) has been acknowledged as important in the delivery of care to people with chronic conditions by improving patient outcomes, we developed and evaluated an intervention to improve the style and content of general practice consultations for older people with asthma. An initial exploratory investigation using in-depth interviews revealed problems with both the self-management strategies and the provision of asthma care to older people. These findings informed the design of a multifaceted educational intervention using best practice models to change physician behavior. The success of our intervention was measured by patient and GP outcomes. Videotaped consultations of GPs and simulated patients (SPs) using scenarios extrapolated from the patient interview data, were used to measure the content and style of the consultations and also as a feedback tool for GPs. Patient outcomes were evaluated by a cluster randomized controlled trial and GPs satisfaction with the program and change to their practice were measured by self-report. This presentation demonstrates how mixed methods and mixed methodologies were successfully utilized to translate knowledge and achieve a change in physicians practice.
Mind the Gap: Trends and Patterns in the Reporting of MMR evidence in Key U.K. Clinical and Professional Journals and Magazines between 1988 and 2007
Shona Hilton
Kate Hunt
Medical Research Council
Mark Petticrew
London School of Hygiene and Tropical Medicine
In the United Kingdom the publication of a paper by Andrew Wakefield in The Lancet in 1998 prompted a public debate about the safety of the MMR (measles, mumps, rubella) vaccine. In the ensuing years, MMR remained a focus of controversy, and MMR uptake declined despite extensive epidemiological evidence about the safety of the vaccine. On the ground, primary health practitioners found themselves in the front line when it came to advising parents on the safety of MMR but described a crisis in confidence as they tried to keep up-to-date with the research evidence on the vaccine. Scientific and clinical journals are an important vehicle in the dissemination of research findings to health practitioners, and their role in translating evidence and offering evaluative comment and guidance on controversial evidence may be heightened during a public health scare. The debate surrounding MMR safety provides a recent case study in which to examine how key journals and magazines translated evidence to health professionals. This paper examines the trends and patterns in the reporting of MMR evidence in key practitioner journals and magazines between 1988 and 2007. We used content analysis on all editorials, commentaries, and news articles (n = 860) published in the six journals and magazines that had been identified by health practitioners as the ones they most commonly consulted. We will present an analysis of the trends and recommendations in articles over the period of the MMR controversy to highlight how guidance for practice was aligned with the scientific evidence on MMR safety.
“His” and “Her” Transition to Parenthood: Fact or Fiction?
Lorraine Andrews
Joan Lalor
Trinity College Dublin
Declan Devane
National University of Ireland, Galway
Transition to parenthood has been described as a process of adaptation, which takes time. The literature alludes to variations in the process based on gender. Yet, there is little exploration as to whether there are areas of commonality between men and women in order that midwives may support this transition for both parents in the early postnatal period. A grounded theory study of transition to parenthood was conducted with 10 women and 8 men. A secondary analysis of primary data sources, using the constant comparative method, was undertaken to explore if commonalities exist between genders in the basic social and psychological process of transition to parenthood. Although couples felt emotionally prepared for the birth of their baby, they were quite overwhelmed by the demands of caring for a newborn in the initial 3 weeks. Irrespective of gender, becoming a new parent was described as being “hard work.” Although each participant had similar concerns regarding their new role, there were distinct differences based on gender. Although each woman had 9 months to prepare for the birth, each woman described the newborn period in term of being a “shock to their system.” Alternatively, the transition for fathers was somewhat less abrupt, and more of “a gradual change.” Midwives should recognize that transition to parenthood has a gender-based element and a one size fits all approach to postnatal support is not necessarily effective. Further exploration of the variances are required if a framework to understand transition to parenting is to be generated.
“Aparnay Lowkh” (Our People): Reflections of Being Adopted as a “Daughter” in the Process of Qualitative Fieldwork
Bindy Kang
Paul Galdas
University of British Columbia
In qualitative research, participant interview accounts are considered to be interpretations of the world shaped by the contexts in which they occur, and one of the most influential mediators of participant accounts is the interviewer's relationship, positionality, and ability to facilitate dialogue with the participants. Studies looking at the effects of race/ethnicity on interview response have demonstrated that the perceived ethnic heritage of a researcher can have significant implications on the types of response proffered by an interview participant. Additionally, the researcher's own reflexive, critical engagement plays a key role in how cultural/ethnic communities are contextualized. As a result, there has been much debate in the literature as to whether a researcher has to be a cultural “insider” to legitimately conduct interpretive interviews with participants from an ethnic cultural community.
In this paper, I will present reflections of conducting in-depth qualitative interviews that explored the cardiac rehabilitation experiences of members of an Indo-Canadian community in British Columbia, Canada. As I am a member of the South Asian Diaspora, my hybrid fieldwork experience allowed for a number of reflections on the insider/outsider debate as it applies to the study of ethnic/cultural minorities in the Canadian healthcare system. Being embraced as a cultural insider, my identity roles shifted from researcher to “daughter.” Although this continuum opened up spaces of dialogue, it also carried a heightened responsibility to honor the shared personal narratives and to not allow for misinterpretation, and led to reflections on how a shared cultural affiliation can cultivate a safer collaborative process between researcher and participants.
Systemic Modeling: A Promising Research Methodology for Knowledge Development in Family Nursing Practice
France Dupuis
Fabie Duhamel
Sylvie Gendron
University of Montreal
In nursing science, only few research methodologies allow for a better understanding of what goes on in the “black box”, i.e., during interactions between nurses and families. However, exploration of this type of interaction is of utmost important for the development of nursing practice. Systemic modeling represents a promising methodological approach when research involves systemic family nursing practice. This presentation highlights results from a study that aimed at exploring the transition process of families living with an adolescent who has cystic fibrosis, before transfer from a pediatric to an adult health care facility. The research consisted of a qualitative instrumental case study, based on a theoretical systemic framework. Qualitative data was collected from semistructured individual and group interviews with 26 participants. Analysis based on systemic modeling led to the development of a systemic model of the transition process for the participating families. This type of analysis allowed for a better understanding of family dynamics interactions as well as interactions between families and health professionals. Results show that this methodological approach is congruent with the theoretical underpinnings of family systems nursing practice and could greatly contribute to furthering knowledge in this domain in nursing.
A Grounded Theory Study into Family Practice Learning
David Cunningham
NHS Education for Scotland
In Scotland, protected learning time (PLT) allows primary health care teams (PHCTs) time to learn together to improve patient care. During PLT, PHCTs are protected from service delivery for approximately 6 afternoons per year. Interprofessional and multiprofessional learning is encouraged. A survey in 2004 showed that family physicians and practice nurses valued PLT highly. In contrast, administrative and clerical staff, practice managers and community nurses valued the resource much less.
To understand why this was, 12 focus groups were conducted from 2005 to 2007 to gain the perceptions and experiences of administrative and clerical staff, practice managers, community nursing managers and community nurses. Focus group transcriptions were analyzed using grounded theory methods.
Analysis showed that learning that focused on teamwork, was fun and enjoyable, and placed value on the contributions from all PHCT members was well received by participants. Team-building events, when members got to learn about each other and their roles, were beneficial. Events arranged for PLT were often uniprofessional, and some participants, such as community nurses, felt isolated and distant from the PHCT, both during PLT but also at work.
It was clear that learning collectively was a new approach for some of the teams involved, and they needed more educational knowledge and skills to overcome the perceived barriers to team-based learning and change. If PHCTs are to face the service deliver challenges of the future in family practice, they need to learn how to work and learn as a team more effectively than at present.
An Examination of Cross-Cultural Patient Care from the Perspective of Families and Health Care Providers: Neonatal Intensive Care as a Case Example
David Nicholas
Jonathan Hellmann
Bonnie Fleming-Carroll
Eden Dales
Michele Durrant
Dianne Fierheller
The Hospital for Sick Children, Toronto, Canada
Despite the growing population of new immigrants and refugees in Canada, there is little research addressing the health care experiences of new Canadians. Specific to a NICU focus, existing research presents substantive gaps that limit our understanding about how ethnically diverse families experience and negotiate their child's hospital-based care. Furthermore, there is little in the literature that addresses the challenges that health care providers face when working in multicultural settings.
This study aimed to examine the health care experiences of both providing and receiving cross-cultural neonatal intensive care. This project offers insights and recommendations to address perceived gaps between what is provided and what is needed in improving NICU-based care to ethnic minority families.
Families (parents) of ethnic minorities (N = 30) as well as their NICU health care providers (N = 30) are being interviewed. Focus groups among interprofessional health care providers also have been conducted in exploring service gaps for ethnic-minority families and service delivery obstacles.
Rich insights regarding gaps in care, and areas for needed improvement, will be presented in this session. Challenges for both families and health care providers will be addressed, as will recommendations for family-centered pediatric care in a multi-cultural context.
Explicating Interplay with the Medically Fragile Newborn Infant
Helen Shoemark
Royal Children's Hospital
In this qualitative inquiry the researcher investigated the markers of interplay between the music therapist and the medically fragile newborn infant. The inquiry was underpinned by a constructivist paradigm and involved an emergent design informed by the models of thick description and case study. The relative power of participants was one of the most confounding factors in this study, with the author serving as therapist and primary investigator.
The emergent design was structured on a three-tier scaffolding of description, analysis, and interpretation (Rostvall & West, 2005; Morse & Pooler, 2002). Audiovisual data from 94 sessions were sampled to select three significant events in interplay (one each of positive, moving along, negative), which were subjected to micro-analysis by the therapist and four expert reviewers to elucidate the infant's experience. The reviewers each engaged in a facilitated, video-cued discussion with the therapist as participant (Raingruber, 2003). The transcribed material collated from the reviews and discussions was used to create thick descriptions of the significant events. These descriptions were annotated for explicit and implied infant and therapist behaviors and subjected to thematic analysis.
The outcome was 14 sets of behaviors used by the medically fragile newborn infants to indicate availability for interplay and 20 sets of behaviors the therapist used in response to the infants. The interaction between these behaviors provided seven markers of interplay between the music therapist and the medically fragile newborn infant.
The Impact of a Teaching Nursing Home Model on Quality of Nursing Care and Quality of Life of Residents: Past Research Findings and Future Qualitative Approaches
Carole-Lynne Le Navenec
University of Calgary
Sandra Hirst
Brianna Friesen
Fei (Rebecca) Yang
Margarita Gil
Faculty of Nursing
The purpose of our extensive review of the literature, meetings with stakeholders in the province of Alberta, and subsequent research proposal is to identify the salient facilitators and barriers to having nursing faculty from university settings establish effective partnerships with selected nursing home practice settings. This Teacher Nursing Home model, which was developed in the United States during the early 1990s by a range of researchers, particularly the nurse educator-researcher Dr. Mathy Mezey from the Division of Nursing at New York University, has been found to facilitate a higher quality of nursing care in residential settings and an enhanced quality of life of the residents. The questions that were addressed in our recent literature review and which will be addressed in our upcoming qualitatively orientated survey include (a) What effect do such programs have on increasing gerontological content in senior level undergraduate nursing courses? (b) What effect does it have on the attitudes of senior level student nurses toward working with older people, and how is that effect “measured”? (c) What factors have been found to most affect the decision of new nursing graduates to work in a nursing home setting? and (d) What are nursing faculty doing to develop and disseminate knowledge to senior-level nursing undergraduates about Geriatric Nursing Protocols for Best Practice. The major themes of the literature review, interview findings study will be described, and the implications for future research will be reviewed.
The Power of Voice: The Use of Narrative in Presenting the Lived Experience: Narratives of Cancer Survivors.
Gerard Tobin
University of New Hampshire
This presentation will offer an alternative perspective on presenting textual data. The presentation draws from a doctoral study that explored the giving and receiving of a cancer diagnosis. The phenomenological study utilized unstructured interviews as the main data collection tool. Recipients (people who received a cancer diagnosis) and significant others (identified by recipient) were invited to participate.
For the purpose of this presentation, the focus will be on the narrative of the recipient and the power of voice in giving meaning and context to their story. The power of their stories and the insightfulness of their narrative provide a rich tapestry from which health care providers and researchers can gain insight.
There is potential for the transcription of interview data to decontextualize the interactions and rob the participant of their true voice. Today, with rapidly changing multimedia technology, the challenge is to create meaningful presentations that can prevent the decontextualizing of narrative, offer voice and not just text, and provide meaning & not just data.
The presentation will utilize the voice of recipients and cancer images identified by participants to offer a multidimensional connection with the lived experience of the participants.
The presentation aims to create a form for open discussion between presenter and audience on emerging technologies and how they challenge traditional modes of presenting qualitative research. The images chosen by the participants and their narrative voice are very powerful and may make people feel uncomfortable, yet to sanitize the narratives is to demean their lived experience.
The Relevance of Agency for Describing and Evaluating Doctor-Patient Interactions
Sarah Bigi
Università Cattolica del Sacro Cuore di Milano
Over the past 30 years, researchers have shown the deep impact that good communication between doctors and patients has on patient outcomes and satisfaction. The present paper presents partial results of a larger project aimed at developing a method for the analysis of doctor-patient interactions by integrating insights from the communication and the medical sciences.
Within this approach, doctor-patient interactions are viewed as cases of situated discourse, sharing certain typical traits with all communicative interactions but also showing features that are proper only to them. The method followed in this approach starts by describing the context of doctor-patient interactions, which are then described in terms of activity types (problem solving, decision making, etc.) and joint activities. This allows the highlighting of some of their most relevant features, above all the fact that doctor-patient interactions belong to the kind of unbalanced joint activities; i.e., where one of the participants has a leading role.
The present paper focuses in particular on the asymmetry that characterizes doctor-patient interactions, describing it by resorting to the notion of agency, a concept developed within economic sciences but that has proved to be useful also in other contexts.
Describing doctor-patient relationships in terms of agency permits to reconsider certain assumptions regarding the roles of the participants in this kind of interactions. In particular, the role of the patient appears to be far more prominent than it is usually considered to be.
Nurses Experiences of Exclusion when a Patient Receives a Cancer Diagnosis: A Phenomenological Exploration of Meanings
Gerard Tobin
University of New Hampshire
The aim of this presentation is to describe the experience of nurses in being excluded when a cancer diagnosis is given to their patient. The discussion will focus on the meanings attributed to the experience by the nurse. The findings are part of a doctoral study, which explored the giving and receiving of a cancer diagnosis amongst a group of healthcare professionals and recipients within the Republic of Ireland. The phenomenological study utilized unstructured interviews, as the main data collection tool.
Nurses were invited to participate and for the purpose of this presentation, the focus will be on the experiences of nurses working within a variety of acute hospital settings. Interviews were coded using a phenomenological descriptive approach. Two main categories emerged; Connectedness: Journeying as Professional within the Everyday World, and Connectedness: Exclusion of Professional within the Everyday World. Themes of Connectedness & Personal Linkage; Collaborative distancing; Being invisible; Picking up the pieces and Walking in a fog will be explored.
Collegiality and working relationships were issues of importance to all participants. Being there and getting close produced strains on the nurse-patient relationship and caused emotional pain for the nurse. Issues of truth-telling, euphemisms and silent avoidance were also evident within the narratives.
The study highlights the there is a need to offer a forum for nurses to begin to explore their role and contribution within a multidisciplinary team when patients are to be given bad news.
Adolescence: A Temporal Behavior Trajectory
Al-Ola Al-Mahmassani
Martin White
Eileen Kaner
Institute of Health and Society
Morbidity and mortality among adolescents is mainly due to their lifestyles, frequently referred to as “social morbidity.” Smoking, substance use, unprotected sex, unhealthy diet, and physical inactivity are the major risk behaviors associated with adolescence. Adolescence is a critical stage of life which is marked by increased experimentation and independence from adult caregivers; adolescent behavior can also shape subsequent lifestyle choices. This study explores adolescents' perceptions and practices regarding health-related behaviors, including their views about individual, social, and environmental factors that influence them. In-depth interviews were conducted with 24 participants aged 17 to 21 years, recruited from educational and employment settings. Interviews were transcribed verbatim, and NVivo software was used to assist the analysis. The constant comparative method guided data sampling and analysis. Data were analyzed inductively to examine emerging themes and develop an explanatory framework for lifestyle choices. Preliminary analysis of 10 interviews identified that influential others' opinions and behaviors and participants' knowledge and self-efficacy influenced adolescents' engagement in unhealthy behavior. A key theme was a perceived behavioral trajectory through adolescence. Participants recalled looking forward to becoming 15 to 17 years old, which is when they expected to practice unhealthy behaviors. They also talked about their views of such behavior patterns at later ages. Knowledge of negative health consequences did not appear to influence risk behaviors. Mid-adolescence appears to be a key but malleable stage in the development of lifestyle behavior. Thus early adolescence might be the opportune time for health promotion interventions focused on lifestyle behavior
The Effect on Adolescent Development for Girls Who Experienced the Loss of Their Mother: A Phenomenological Study
Donna Hallas
New York University
Girls between the ages of 10 and 14 who experience the loss of their mother are a vulnerable population. These girls enter adolescence without the opportunity to grow in connection to their mother. This loss can have devastating effects on the views of the adolescents on womanhood, personal relationships, and motherhood. Adult women who experienced the death of their mother during their preadolescent and early adolescent years were participants in this phenomenological study, which examined how the loss of their mother affected their lives and development through their adolescent and young adult years. Participants were asked to respond to these questions which guided the one-hour interview: Describe all the feelings and emotions you experienced as you progressed through your adolescent years after the loss of your mother. Highlight individuals, groups, or experiences that may have positively and/or negatively impacted your adolescent development. Describe the impact of your loss on your adolescent and adult life experiences. Colaizzi's methodology was used for data analysis. Major themes emerged from the data were Feelings of overwhelming loss and loneliness; Unpleasant reminders, such as mother's day; Uncertainty about my own ability to mother my children; and Healing is knowing that she would be proud of my mothering ability. Insights for helping preadolescent and adolescent girls who experience the loss of their mother during this critical period of development emerged from this phenomenological investigation. The personal accomplishments of these women in mothering their own children were a powerful influence on their personal sense of self.
The Development of a Theoretical Framework for a Complex Lifestyle Intervention
Maggie Lawrence
Susan Kerr
Rosemary Whyte
Hazel Watson
Glasgow Caledonian University
In this qualitative paper the authors will discuss the complex theoretical underpinning for a program of research on the development, delivery and evaluation of a family-centered intervention designed to address secondary prevention/lifestyle issues in a Scottish stroke population.
Acknowledging the complexity associated with lifestyle behavior/behavior change a psychological approach, the Theory of Planned Behavior (TPB) was selected to inform the work. TPB describes and explains behavior/behavior change as determined by intentions to engage/not to engage in specific behaviors; e.g., smoking. Intentions are informed by attitudes, motivation, and perceived behavioral control, factors embedded in/influenced by intersubjective relationships within the family.
In recognition of the importance of the family construct, the Calgary Family Assessment/Intervention model (CFAM/CFIM) was selected to complement the TPB. CFAM/CFIM is a family systems theory centered on the family's reciprocal relationships, including those with external agencies; e.g., health care practitioners. CFAM/CFIM enables the family to understand how it “works” by encouraging introspection and collaboration. It enables practitioners to take into account the uniqueness of families, their processes, and their needs, and facilitates an understanding of the process of an intervention rather than simply its outcomes. These foci on reciprocity, introspection, and uniqueness are all elements of the phenomenological concept of intersubjectivity, the philosophical approach that unifies the theoretical underpinnings of the research.
Development of this complex theoretical framework was essential to facilitate an understanding of the mechanisms that influence family-centered lifestyle behavior change. It will influence development, delivery and evaluation of the research throughout the five stages of the overarching Complex Interventions framework.
Sun Protection and Skin Cancer Prevention: Creating Awareness and Promoting Behavioral Change
Valentina Kloosterman
Ann Bessell
University of Miami
Although preventable, skin cancer is the most common form of cancer diagnosed in the world. Excessive sun exposure during childhood and adolescence is a major risk factor for skin cancer later in life. Thus, due to the critical need to protect children from the overexposure to the sun, a collaborative research-educational partnership created SunSmart America. The major goal of this program was to promote not only awareness but also behavioral change.
This session presents findings from a qualitative study examining the implications of school principals', physical education educators', and parents' awareness, knowledge, and behavior toward sun safety and skin cancer prevention in elementary students. This study is part of a larger mixed-method evaluation supported by the U.S. National Institutes of Health. Purposeful sampling was employed and multiple sources of information including interviews, observations, focus groups, and photographs were used for data collection. Four of the 11 intervention schools were selected to participate in a more in-depth study. Data were audiotaped, transcribed, and analyzed based on Strauss and Corbin's coding paradigm.
Major findings indicate that most school principals, physical education educators, and parents believed sun protection was a health issue concern, had knowledge of skin cancer facts, and agreed that engagement in sun safety practices was important. However, knowledge and intent were not always successfully translated into behavior. Thus, a health promotion theoretical research-based framework will also be discussed to garner insights related to sun protection issues.
Attendees' involvement will be welcomed, and materials and resources will be distributed.
Choosing a Career: Why Not Nursing?
Leanne Pool
Whitireia Community Polytechnic
Nursing is a career that could offer many challenges and rewards to young people, yet most do not choose a career in nursing. A qualitative descriptive research design was chosen for this research to explore how young people make career decisions and why young people might choose or reject nursing as a career choice. . Thirty four young people from two local high schools and a church group volunteered to participate in focus group interviews to discuss how they made career decisions and their perceptions of nursing as a career choice.
The career decision-making process described by Leach and Zepke (2005) was used as a model to present the findings. The findings suggest that in the predisposition stage, it is crucial to provide culturally appropriate advice and support to parents because of the key role they have in the young person's career decision. In the search stage, it is important that young people make positive connections with role models and mentors and are supported in exploring their career interests and aspirations within the educational environment. In the choices stage, young people should be aided in developing a career pathway. Finally, the profile of nursing needs to be raised across all three stages of the career decision-making process. Addressing gender stereotypes held by both male and female young people as well as by parents, the educational environments and the community seems crucial to developing nursing as an attractive career option for young people.
The Perspective of Midwives Involved in Offering Serum Screening for Down's syndrome in Northern Ireland
Jenny McNeill
Fiona Alderdice
Queen's University, Belfast
The offer and discussion of prenatal serum screening tests, in particular screening for Down's syndrome is complex and health professionals may influence women's decisions to accept or decline screening. The perspective of midwives is relatively neglected despite their usually being the key professionals to offer serum screening for Down's syndrome in the United Kingdom. The aim of the study was to explore the perspective of midwives who were involved in offering serum screening for Down's syndrome. The offer of screening was situated within a universal offer policy of screening in the study site and in a wider cultural context where termination of pregnancy for fetal abnormality is not acceptable either legally or politically for the majority. Fifteen midwives were recruited from a maternity unit in Northern Ireland, and in-depth interviews were conducted from 1 July 2005 to 31 October 2005. The data indicated that midwives experienced personal and professional conflict, which influenced their discussion with women about the triple test, and for the most part a negative perspective was reported by midwives. Midwives were also reluctant to discuss termination of pregnancy with women in relation to potential test results. The feasibility of proceeding with a universal serum screening program for Down's syndrome is questionable in countries that oppose termination of pregnancy, and the inclusion of health professionals when planning screening policy is essential. The conflict evidenced by midwives who were involved in offering a screening test to women with debatable individual benefit, raises concern about the current drive toward implementing universal screening programs.
Conceiving Time!: Miscarriage, Corporeal Identities, and Contestation
Christine Kenney
Massey University
Midwives provide total maternity care for pregnant women within the bicultural environment of New Zealand, and the incidence of miscarriage constitutes a significant practice issue. My research explores and analyses women's and midwives' stories about miscarriage. The research design draws on MāBori (indigenous) research methodologies, midwifery philosophies, and the narrative analysis concepts of Margaret Somers and Arthur Frank. The theoretical approach is informed by the theories of Pierre Bourdieu, Bruno Latour, Paul Ricoeur, and Rom Harré. My development of a bicultural midwifery research methodology informed by multidisciplinary theoretical approaches is innovative for midwifery, and potentially health, research. Drawing on these ideas, my research suggests that there are multiple and contradictory corporeal temporalities associated with women's reproductive health. Specific embodied temporalities identified and discussed by participants include fetal gestational age, personal biological age, menstrual cycles, menarche, and menopause. These different dimensions of corporeal temporality are incorporated into medical, social, and institutional discourses and may be identified in measurements of health status, health risk, moral and cultural values, and the determination of humanity and identity, which determine access of participants to miscarriage related knowledge, care services, care providers, and care interventions. Women's and midwives' corporeal time(s) or temporalities are measured and or evaluated by actors, depending on the context in which miscarriage narratives are disclosed. Therefore as narrative constructions of timing(s) and duration(s) are personally, culturally, professionally and/or socially created, such temporalities, and therefore associated identities, may be subject to contestation.
Living an Ordinary life: How Young People Incorporate Medical Technology into Their Everyday Lives
Susan Kirk
University of Manchester
Medical advances have led to the emergence of a group of children and young people who need the ongoing support of medical technology for their survival and well-being. Although a number of studies have now illuminated how parents experience caring for this group of children, little is known about how the children themselves experience living with the technology. This paper will present the findings from a study that aimed to begin addressing this gap in knowledge.
The study used a grounded theory approach to explore how 28 children and young people perceived the experience of living with medical technology. Data were collected by in-depth interviews with children and young people aged between 8 and 19 years old. Parents were the key informants on the lives of nine young people who did not use verbal communication or alternative communication systems. The young people needed the continuing support of a range of technologies such as ventilators, tracheostomies, intravenous therapies, and gastrostomies.
The young people constructed medical technology as having both an enabling and disabling presence in their lives. Although the technology sustained their life and health, it also structured their interactions and daily lives. Their accounts revealed the goal of “living an ordinary life,” and the strategies and resources that they used to incorporate the technology into their social and personal identities as well as their daily lives and illness work. This paper will present these findings and their implications for future research and health and social care practice.
Developing and Evaluating a Website for Surgical Adolescent Idiopathic Scoliosis Patients
David Nicholas
Radha MacCulloch
Sandra Donaldson
The Hospital for Sick Children, Toronto, Canada
Joyce Nyhof-Youn
Toronto General Hospital
James G. Wright
The Hospital for Sick Children
Adolescents and families considering surgery for scoliosis need basic information including expected outcomes with and without treatment, including risks and benefits of treatment. Families also need support in response to their individual concerns.
This presentation reports the findings from a mixed method study which sought to qualitatively identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis facing spinal surgery.
Adolescents (10–18 years) who had either experienced or were anticipating surgery within 12 months participated in focus groups. A series of two focus groups consisting of 8 adolescents (1 male and 7 female) and subsequent individual interviews with 3 adolescents (1 male, 2 female) yielded participant concerns. Focus group transcript data was subject to content analysis through a constant comparative review and analysis.
Specific concerns of participants that emerged comprised (a) worries about their recovery at in hospital and at home; (b) postsurgical appearance; (c) emotional impact of surgery and coping; (d) intrusion of surgery and the resumption of daily activities; (e) impact on school, peer relationships, and other social interactions; (f) how to make the decision to have surgery; (g) considerations about instrumentation and hardware; (h) being in the operating room and; (i) future worries. Overall, adolescents identified the need for complete and accurate information, a means for peer interaction, a website with comprehensive and accurate information, and the opportunity for health professional-moderated, online peer support.
Examining the Mothering Experiences of Abused Women: The Implications of Qualitative and Quantitative Methods of Investigation
Caroline McDonald-Harker
University of Alberta
Over the past several decades there has been considerable academic, policy, and public attention paid to the social problem of domestic abuse in Canada. One result of this increased attention is that a large body of feminist criminological literature on domestic abuse has developed. However, with the recent move in feminist criminology toward explorations of differences among women, women's identities as fragmented and even conflictual, and women's subjectivity as socially constructed, much of this literature has been criticized for failing to specifically consider an important aspect of the varied, heterogeneous, and multiple facets of abused women's lives: mothering. The failure of this literature to examine mothering as another important aspect of abused women's lives continues to persist despite long-standing research findings that indicate that women with children are up to three times more likely to experience domestic abuse than are childless women. The small body of feminist criminological literature on mothering in the context of domestic abuse which does exist is divided in terms of its epistemological positions and research methods. I will discuss the different epistemologies, the different research methods, and the possibility of epistemological and methodological pluralism in feminist criminological research on mothering. In this regard, I will examine its potential ability to shed light on different aspects of the mothering experiences of abused women, and to produce feminist criminological research on mothering that remains faithful to the mothering experiences of abused women.
Intimate Partner Violence and the Leaving Process: Interviews with Abused Women
Maria Scheffer
Lindgren Barbro Renck
Public Health
Intimate partner violence (IPV) is a global health problem. Previous studies have shown the complexity of a violent relationship and provide different explanations for the reasons why the women do not leave. Recently the focus has also been on to women who in fact leave their violent relationships. There is a call for more research on the leaving process to identify key factors potentially amenable for intervention. With aid of constructivist grounded theory, within a Swedish context and through qualitative in-depth interviews, the aim was to increase the understanding of abused women's experience of leaving heterosexual violent relationships. The findings show in an empirically generated model that fear is a central theme and phenomenon in the process of leaving a violent relationship. Fear is described in many different ways and the analysis show that these feelings function as both restraining and releasing factors. Three key categories, restraining break up, balancing between staying and leaving, and releasing turning point, were found and these could be related to the core category, fearfulness as a driving force to leave.
The Continuing Challenge of Discerning Safety: Female Survivors of Childhood Sexual Abuse during Perinatal Services
Karla Richmond
Azusa Pacific University
The vulnerable population of female survivors of childhood sexual abuse (CSA) spends much time discerning safety for themselves during pregnancy and childbirth. They are acutely attuned to discerning intentions, attitudes, and treatments from perinatal providers. Discerning Safety is a core category that emerged from a grounded theory study of the experiences during perinatal services of 11 survivors of childhood sexual abuse. An important aspect of their care is the women's perceptions of how providers, physicians, and nurses treated them during their pregnancy, labor and delivery, and postpartum experiences. Their feelings of trust and how safe or unsafe they felt was a paramount issue that influenced their accessing care. Subcategories that emerged were how the survivors “go about” discerning safety for themselves, and ultimately the fetus, during perinatal services. The subcategories include evaluating provider gender preference, being disregarded/regarded, making assumptions, and assessing attitudes/actions. Currently in perinatal services, disclosure of a history of CSA is mostly at an impasse between survivors and providers. Thus, safety for female survivors during perinatal services is difficult to address.
Critical Reflections on Theoretical Sampling: Using Survey Data in Sampling Decisions
Kay Currie
Glasgow Caledonian University
The aim of this paper is to describe and evaluate the experience of using survey data to identify participants for interview, based on theoretical sampling decisions, as a relatively innovative approach in grounded theory methods. This technique was applied within a PhD study exploring graduate specialist practitioner engagement in clinical practice development (Currie, 2006).
Based on a review of contemporary sources claiming to use survey with grounded theory methods, most published work appears to apply mixed methods, blending survey data and a modified grounded theory approach. Only one located study (MacTavish & Schleien, 2004) reports using a “sequential-purposive sampling technique” that appears comparable to the sampling approach discussed here.
When considering recruitment to the study, professional experience led me to believe that it might be possible to distinguish between graduate specialist practitioners, based on a range of characteristics. These beliefs could be said to indicate my assumptions about graduate specialist practitioners and their engagement in practice development. These assumptions were translated into a set of “principal features,” or characteristic areas, which were incorporated into a recruitment questionnaire to be administered by postal survey. As noted by Glaser and Strauss (1967), these features may or may not eventually emerge as relevant in the study. However, delineating possible characteristics gave me a starting point, which subsequently allowed me to theoretically sample interview participants based on an initial awareness of their characteristics.
Reflection on the application of this sampling approach demonstrates both the value and limitations of utilizing survey data in this way.
Advance Directives and Guardianship Planning by People with HIV and AIDS: A Grounded Theory
Craig R Sellers
University of Rochester
The purpose of this doctoral dissertation study was to develop a grounded theory of how people with HIV/AIDS make plans for the future.
Only about 25% of people with HIV/AIDS have executed advance directives (ADs). ADs include living wills, health care proxies, and do-not-resuscitate orders.
In this qualitative study, people with HIV/AIDS were sampled theoretically from among community-dwelling adults in western New York State. Verbatim transcriptions of audiotape-recorded in-depth interviews were analyzed using a constructivist grounded theory approach.
A number of conditions affected an HIV+ person's likelihood of making plans for the future: trusting a person to name as proxy, experiencing future health care planning for family members or friends, accurate understanding about ADs, focusing on the future versus on the day-to-day, spiritual beliefs about the future, input from health care providers, and not wanting to burden loved ones. Additionally, having dependent children, being a single parent, and their children's wishes about guardians also significantly influenced future planning. Unless all or nearly all these conditions favored the ability to make plans, individuals were unlikely to be able to plan for their future health care or care of their children.
Past research has focused on education about ADs. Scant research has described the impact that having minor children has on these decisions. Clinicians who work with people with HIV/AIDS are encouraged to explore these factors with patients. Some barriers (e.g., planning for children before focusing on self) may lead more easily to intervention than others (e.g., focusing only on one day at a time).
Barriers to Health Care Providers Responding to Mass Casualty Incidents
Dolores Wright
Loma Linda University
Although nurses have a long history of providing emergency care, they may not be prepared to provide care during extreme situations such as mass casualty incidents (MCI). Surveys have been conducted in US metropolitan areas to determine the ability and willingness of health care providers, including nurses, to respond to MCI. The barriers identified were transportation, eldercare, child care, and pet care obligations. Another issue was that as events unfold the level of willingness decreased.
The purpose of this study was to discover similarities or differences in perception and attitudes of health care providers in other countries and cultures to barriers they may have in their ability or willingness to respond during a MCI.
The study participants were masters prepared nurses who represented 12 countries in Asia. Data was collected during focus groups where the participants were divided along geographic areas into four groups. The focus group sessions were tape recorded and then transcribed verbatim. Certain patterns emerged during data analysis.
The first three groups represented the Indian subcontinent, Southeast Asia, and eastern Pacific island nations. The most noted barrier to participating in an MCI was transportation followed by personal illness. The fourth group represented mainland China. Their responses were quite different. They reported no barriers at all because of the incentive systems in place in their country. As nurses immigrate to developed countries, understanding their professional values of disaster care would be an asset to their employers and to planners of disaster response teams.
A Middle-Range Theory for Nursing: The Phenomenon of Recovery as Perceived by People with Schizophrenia, Family Members, and Health Professionals—A Qualitative Study
Sylvie Noiseux
University of Montreal
The purpose of this study is to propose a theoretical explanation of recovery. Data were collected from 41 participants (16 people living with schizophrenia, 5 family members, 20 health professionals). Selection criteria required the people living with schizophrenia to be in stable health, see themselves as being in the process of recovery, and be able to speak about it. Family members were expected to have displayed a strong bond with their relative living with schizophrenia, and the health professionals to have had at least 3 years experience dealing with schizophrenia patients. It is an appropriate approach for the conceptualization of complex phenomena and the development of middle-range theory. Seven categories emerged from the analysis perceiving schizophrenia as a “descent into hell,” igniting a spark of hope, developing insight, activating the instinct to fight back, discovering keys to well-being, maintaining a constant equilibrium between internal and external forces, and, finally, seeing light at the end of the tunnel. Comparison of these categories led to their being consolidated into a core category in which recovery is defined as a “process involving intrinsic, non-linear progress that is primarily generated by the role as actor that the individual adopts to rebuild his or her sense of self and to manage the imbalance between internal and external forces with the objective of charting a path through the social world and regaining a sense of well-being on all levels.” This study of recovery from schizophrenia is conceptualized from the nursing perspective.
On Becoming a Parent of a Baby Born with Down Syndrome
Roja D. Sooben
University of Hertfordshire
This is a descriptive phenomenological (Merleau-Ponty 1961) research inquiry set within the context of the U.K. National Antenatal Screening Programme for Down syndrome. A purposive sampling of seven families participated in the study and data were collected by means of unstructured interviews (Kvale 1996). The overarching aim of the study was to gain an insight into the lived experiences of parents of children born with Down syndrome during their antenatal and postnatal care periods. Categories and themes were drawn from the data using Colaizzi's (1978) seven-step analysis procedure.
The essence of the research findings points to an unequivocal message that the needs of those born with Down syndrome and their parents were not considered in the same way as others. Health care professionals were perceived to be embarrassed or lacking in knowledge about Down syndrome, and consequently parents had limited opportunities to talk about the needs of their future child. Needs of the infant were not considered for their similarities with other babies; instead, the “differentness” of the newborn was emphasized mainly within a biomedical problem-oriented context. Reproductive choices are at the heart of the U.K. antenatal screening program, and the facilitation of reproductive autonomy must include particular support for parents of babies with Down syndrome, before and after birth. This may then help to decrease the evident marginalization of such vulnerable groups. Health educators and practitioners must therefore devise new ways of working that reflect a more inclusive practice that promotes equality and diversity of health care needs.
Development and Evaluation of Inclusive Processes in Pediatric Interprofessional Practice
David B Nicholas
Bonnie Fleming-Carroll
Margaret Keatings
Ted McNeill
Ronald M Laxer
Cindy Bruce-Barrett
Peter Cox
Natasha Brownrigg
The Hospital for Sick Children, Toronto, Canada
Interprofessional practice (IPP) has emerged as a national and international priority in health care delivery. This mixed method study examined IPP practices in a large Canadian pediatric center. Objectives comprised evaluating current IPP practices and the experiences of health care professionals, perceived outcomes of IPP, and areas for further IPP development. A mixed method research design included (a) administration of an established IPP survey instrument evaluating IPP practices across professions and clinical programs throughout the hospital and (b) qualitative exploration through focus groups addressing IPP experiences, perceived outcomes, and areas for development.
Findings identify a range of perspectives across professions in terms of the nature and extent of IPP currently conducted, its impact on patient care, and the degree of personal and professional satisfaction with IPP. IPP is an ongoing, important, yet challenging process in health care delivery. Meaningful and effective inclusion of children and families both in communication processes and team function are important components. Careful attention and resources need to be provided in optimizing both IPP processes and outcomes. Addressing and incorporating the crucial and valued role of children and families in pediatrics is essential.
To date, there are limited theoretical underpinnings or empirical studies addressing this important area of pediatric IPP. This study presents key findings in developing a new model for pediatric IPP. Findings, implications, and recommendations for practice, theory, and research will be addressed. This study offers important outcomes for consideration in advancing pediatric IPP and in incorporating new models of child and family inclusion.
Researching Black Families
Bertha Ochieng
University of Bradford
Carl Hylton
Leeds Metropolitan University
The use of ethnography is particularly useful in researching the experiences of minority ethnic participants as it provides an opportunity of making their lives visible and placing them as participants, rather than “subjects” or “victims.” This is particularly significant as research with, for instance, African descent individuals and their families have usually failed to take into account the central aspects of their life experiences. The purpose of this paper is to present our experiences as African-descent researchers using ethnography with African-descent participants. The in-depth ethnographic interviewing which we used was found to provide participants with a chance to analyze their description of issues and challenge any assumptions held against them or which they had, thereby promoting a platform for change and giving them a “voice.” We found that as the research proceeded, our levels of “participation” “comprehension” increased as the study itself demanded more. In the paper we argue that for African-descent researchers and other minority ethnic researchers working with participants who share similar ethnicity, academic research and life experiences will overlap. For us, keeping them separated was not possible; equally, acknowledging and exploring the overlap was not an easy task for us. By reluctantly placing ourselves as part of our participants' lives and viewing our own experiences with theirs, we were not only able to empathize with them but were also able to critically reflect on their and our experiences. However, the paper also presents ethical considerations and dilemmas that rose during the data collection period and writing-up stage.
Distinct Patterns of Coping among Individuals with Co-occurring Disorders
Anna Villena
University of California San Francisco
Purpose. To describe how individuals with co-occurring disorders of mental illness and substance abuse manage chronic medical illnesses.
Background and significance. Twenty million people suffer from substance abuse disorder; nearly half have co-occurring disorders (COD) of mental illness and substance abuse. Sixty-one percent with COD have received no treatment for either illness, becoming a burden on health systems. They have disproportionately high rates of chronic medical conditions, overutilize emergent services, and are rehospitalized frequently. Little research exists that describes how this population manages medical conditions while at the same time living with a psychiatric illness and substance abuse or dependence. Method. A purposive sample of 20 individuals with COD (11 male, 9 female) was recruited from community treatment centers and supportive housing sites. Participants were interviewed for one hour on two occasions. Interviews focused on health understandings, illness management narratives, and narratives of positive and negative experiences with receipt of care. Interviews were audiotaped and transcribed verbatim. Interpretive narrative analysis was employed to examine common and distinct experiences of participants in managing their care in the community.
Findings. Three distinct patterns of coping were observed: (a) Interconnected (facilitation of attention to and management of chronic health conditions through significant relationships with family members, friends, and healthcare), (b) Ambivalent (influenced by past negative experiences with health care led to a doubtful state of mind) and (c) Waiting in Defeat (generalized response of hopelessness toward negative health care experiences).
New Zealand Pharmacists' Views, Experiences, and Practices Regarding Nonprescription Use of Antibiotics
Majd Dameh
Pauline Norris
James Green
University of Otago
Over-use and misuse of antibiotics have contributed to the emergence of antibiotic resistance. In most developed countries antibiotics are available only with a doctor's prescription. In other countries antibiotics can be bought without a prescription over-the-counter. Very few studies have investigated pharmacists' views, experiences, and practices regarding nonprescription use of antibiotics and self-medication. We considered that the following factors may influence pharmacists' views, experiences, and practices regarding nonprescription use of antibiotics: ethnicity, education, and years of experience as well as patient ethnic mix. A purposeful sample of pharmacists was selected to include a mixture of ethnicities (NZ Europeans and Others), and a mixture of patient socioeconomic statuses and ethnicities. Six hypothetical scenarios representing different combinations of patient demand or expectation, competition from other pharmacies, standards and practice of fellow pharmacists, legislation, and enforcement of the legislation were designed and included in a semistructured interview format. Thirty-five community pharmacists from Auckland city in New Zealand were interviewed. Transcripts of the interviews were analyzed thematically using NVivo software program. The study found that nonprescription use of antibiotics by pharmacists in New Zealand is more complex than initially thought. Over-the-counter supply of antibiotics is, as expected, not common practice in New Zealand. However, pharmacist self-medication with antibiotics does occur. Many pharmacists reported that under certain legislative and regulatory conditions they would sell antibiotics without a prescription. The protocol of this study was approved by the University of Otago Ethics Committee.
Caring for Patients with Cancer in General Hospitals: A Comprehensive Approach to Social Phenomenology
Maria Clara Matheus
Josiane Travençolo da Silva Paulo
Suzete Maria Fustinoni
Maria Gaby Rivero de Gutierrez
Universidade Federal de São Paulo
This study aimed to expose the reasons which explain the difficulties faced by nurses when taking care of patients with cancer in the private general hospitals of São Paulo, Brazil. The approach of the comprehensive social phenomenology, by Alfred Schutz, was used to analyze speech obtained from 10 nurses working in those hospitals, from February to March 2007. It was possible to comprehend four categories—Fatal disease, Being Unprepared, Powerlessness, Keeping-a-distance and Understanding— and compose the characterization of the social reality of these nurses as highly influenced by the belief that cancer is a disastrous disease that foresees death and extreme suffering for the patient, the family, and themselves. As the nurses acknowledge they have not enough theoretical knowledge or the necessary practical experience, either in the biological or in the psychosocial area, to take care of patients with cancer, they realize they are unable to develop actions that positively influence the care of such patients. As a consequence, they generally keep a distance from the patient in an attempt at emotionally preserving themselves. In sum, the reasons pointed out and explained the difficulties faced by these nurses as well as indicating that such nurses' only project is to promote physical and emotional comfort when taking care of a patient with cancer. However, they do so because they are motivated by humanitarian feelings and do not recognize these actions as being appropriate or of producing good results and benefits for the patient
What Aspects of Culture Influence Prescribing in Family Practice?
Aileen Grant
Frank Sullivan
Jeremy Wyatt
Jon Dowell
University of Dundee
Prescribing consumes 12% of the United Kingdom's National Health Service budget, and is rising. Although initiatives are targeted at family practitioners to encourage application of research evidence, the significant variation in prescribing quality and cost is difficult to explain. No study to date has explored the prescribing process using the ethnographic approach.
Participant observation allowed in-depth study of three family practice cultures. Practices were selected using prescribing quality indicators developed by Audit Scotland via a database that collects Scottish prescribing data. Two practices of high prescribing quality and one of lower quality have been observed. This involved observation of surgeries, practice meetings, clinics, coffee room meetings, and shadowing clinical and office staff. Formal interviews are being conducted. Analysis is ongoing by practice, which will go on to pull together all cases for interpretation and comparisons.
Results presented are from 385 hours of observation. Contact has been maintained with practice 1 for 18 months, practice 2 for 10 months, and practice 3 for 3 months. The practices have diverse cultures and systems. Practices with higher quality prescribing demonstrate leadership (using different styles), face-to-face communication, collective learning and decision-making among prescribers, with the majority working full-time. These factors were absent from the lower quality prescribing practice. Prescribing decisions are initially shaped by evidence-based protocols, but patient views, practitioner's experience and consultant recommendations are strong influences for decisions out with this guidance.
Prescribing decisions are autonomous but shaped by protocols established through collective decisions, so effective communication is important, but it is unclear if this need to be face to face.
A Reflective Study of Aromatherapy Massage for the Management of Chronic Pain in People with Multiple Sclerosis
Amanda Howarth
Sheffield Hallam University, United Kingdom
Aromatherapy massage is the use of essential oils to promote health and well-being. A phenomenological study utilizing a hermeneutic approach was used to explore the experience of aromatherapy massage for people diagnosed with multiple sclerosis who experience chronic pain. A reflexive approach to the research was taken using reflection as both a data collection tool and as a tool for establishing the rigor of the study.
Twelve people were assessed and recruited into the study. Practitioner-based collection tools were employed, including one-to-one semistructured interviews and reflective practice to access storied experiences of peoples' feelings, values, and attitudes regarding aromatherapy massage.
The study established that aromatherapy massage is clearly beneficial for people diagnosed with multiple sclerosis who experience chronic pain. It helps them to cope with and manage their chronic pain. A further significant finding is about the therapeutic relationship between the practitioner/researcher and the study participants. The relationship is relevant and important as an integral part of the treatment; indeed, the aromatherapy may have primarily been providing the vehicle to facilitate the development of such a relationship.
Phenomenological Inquiry as a Method of Investigating the Impact of Innovation in Intensive Care Practice over the Past Decade on the Lived Experiences of Mechanically Ventilated Critically Ill Patients
Agness Tembo
School of Nursing and Midwifery, University of Newcastle
In this paper the author seeks to justify the use of phenomenological inquiry as a method for investigating the lived experience of people who have been mechanically ventilated. In particular, she seeks to understand how innovation in intensive care practices over the past decade has influenced patients' memories and ongoing living.
In the world of intensive care, where the Cartesian way of thinking has led to medicalization of life through scientific technological advances and innovation, the meaning and impact for patients themselves can be overlooked. This paper uses Merleau-Ponty's existential phenomenology to examine the lived experiences of mechanically ventilated patients to gain a deeper understanding that may bring about enhanced praxis in intensive care nursing and medicine.
Merleau-Ponty's fundamental existentials (temporality, corporeality, relationality and spaciality) are central to exploring and explaining the ventilated patients' experience from their perspective. The phenomenological tools: question posing, reflecting and writing make it possible to delve into people's lived experiences.
The proposed analytical method for this study are phenomenological description, reduction and analysis based on Van Manen's hermeneutic phenomenological method, which comprises six dynamic interplay activities which are used in this paper to investigate and determine the care of mechanically ventilated patients.
Concrete Art in an Abstract World: Use of Creative Media to Enable the Voiceless to Have a Research Voice
Annette Roebuck
Clare Taylor
Coventry University
A qualitative study was undertaken to explore the experiences of service users and carers who were involved in piloting the use of individual budgets to take control of their care in the community. Many of the concepts associated with the use of individual budgets are abstract. The majority of service users had a learning disability and many thought in concrete ways. Key challenges for the research project were to empower a group of individuals who may be considered vulnerable, and who had additional communication needs, to tell their own stories in ways that were meaningful to them.
Effective communication in this project relied on communication techniques that were responsive to individuals' needs. The researchers needed to be conscious of potential discrepancies in reporting that may occur between service user and care giver and ensure they accessed the service user voice. It was felt that offering the opportunity for people to tell their stories in a concrete way using familiar media would make the experience more meaningful. Hobbies and interests were explored to identify appropriate activities. During the research creative media such as a large-scale group art project, individual posters, sports sessions, photo albums, PowerPoint presentations, and film were used to access the service user voice.
The presentation aims to explore the challenges involved in enabling the service user voice to be heard when exploring abstract ideas with concrete thinkers, and to evaluate the use of creative media as a qualitative research tool within this setting.
Doing, Being and Becoming: Creative Qualitative Research as a Placement Experience for Final Year Occupational Therapy Students
Annette Roebuck
Clare Taylor
Coventry University
Coventry University undertook a qualitative research study into individuals' experiences of receiving an individual budget to pay for community care. The majority of the participants had a learning disability and the project aimed to access service user views in ways that were meaningful to them. This was to include the use of creative methodologies such as art, video and everyday activities. In keeping with the ethos of service user participation clients were involved in interviewing for research assistants. The interviewing panel discovered that whilst traditional candidates for the job had appropriate research skills, they did not have the necessary communication and activity skills. The timing of the research coincided with final year placements for occupational therapy students and these students had both the research and practical skills required. Placement outcomes were mapped against the project requirements and students were offered the research opportunity as a contemporary placement.
The placement was a growth experience for all involved. Students initially struggled with relating research to practice, but as they worked closely with service users, their professional identities evolved. Doing everyday activities and being therapists in a research setting facilitated a process of transformational change. From being students who knew the theory, they became occupational therapists who lived and articulated all of their underpinning professional values, including that of research as a practice tool.
The presentation aims to explore the experience of qualitative research as a placement experience from the perspective of students, the placement educator and research supervisor.
Mana From Heaven: The Essential Structure of the Lived Experiences of Midwives with Spirituality and Childbirth
Carmen Linhares
University of Hawaii
Spirituality is a subject of growing interest and relevance in health. Yet, minimal research has been done relating to spirituality and health in general, and less research specifically relating to spirituality in midwifery and childbirth.
The purpose of this study was to describe the essential structure of the lived experiences of midwives who alleged they experienced the phenomenon of spirituality when they attended births. The research design was descriptive, using a transcendental phenomenological approach reflected in Clark Moustakas's model. Purposive and snowball sampling were used to recruit the sample of 10 nurse-midwives.
The major findings of this study consisted of five theme categories: Belief in the Existence of a Higher Power, The Essence of Spirituality, Birth is Spiritual, The Essence of Midwifery, and Relationships. The results added new knowledge from the themes described in all five theme categories.
The midwives interviewed for this study validated the assumption that spirituality is an integral and essential component of childbirth. The midwives revealed their definitions of spirituality, how they experienced it, and how it affected their personal lives and their practices. The midwives reported that they had experienced spirituality when attending childbirth, and used elements of spirituality as instruments that helped them to assist their patients through the process of labor, birth, and beyond. Spirituality also helped to foster harmonious relationships between the midwives and the birthing families. The midwives uttered their dependence on spirituality and belief in a Higher Being who guided their lives and their calling to midwifery.
A Mixed Methods Research Design for the Implementation and Evaluation of a Community Project- Bridges to Better Breast Health
Carole Mayer
Crystal Larose
Regional Cancer Program, Sudbury Regional Hospital
Although survival rates for breast cancer are improving, women still report not understanding the risks and symptoms of breast cancer or how to navigate the health care system at time of diagnosis and treatment (Up-front CBCF-OR Research Report, 2007). The project Bridges to Better Breast Health saw a multidisciplinary team work collaboratively with community volunteers over two years (2006–2008) to develop and disseminate information that addresses all parts of the breast cancer trajectory. The grant had four objectives: (a) Build partnerships with sister breast cancer coalitions with a focus to share resources, disseminate breast health information to hard to reach populations in non-urban centers and create capacity to work collaboratively on breast health and breast cancer advocacy issues. (b) Revise the website www.breastnorth.info. (c) Revise the booklet An Information Guide About Breast Cancer. (d) Develop a new breast health passport to be distributed by primary care physicians to educate women on matters of breast health and track their screening practices. This presentation will demonstrate the capacity building that happened within the team to meet target objectives and support a mixed methods research design with hard to reach participants. Focus groups and survey results will be presented for the website and passport. Results from the focus groups conducted with Aboriginal, Francophone and Anglophone communities confirmed the need for breast health education for women living in remote communities with sensitivity to culture, language and style when presenting information. The breast health passport was endorsed as an effective educational resource for women.
A Qualitative Evaluation of a Resource Book for Parents of Children Newly Diagnosed with Autism Spectrum Disorder
David Nicholas
Janice Mulligan
Lee Steel
Radha MacCulloch
The Hospital for Sick Children, Toronto, Canada
For parents of a child with Autism Spectrum Disorder (ASD), the uncertainty surrounding diagnosis combined with confusion around possible treatments and the emotional distress related to coping with their child's symptoms can make the diagnostic process a uniquely stressful experience for parents.
This study sought to evaluate a newly published information book for parents of children diagnosed with ASD, entitled Autism Spectrum Disorder: Information for Parents. This study involved (a) a review of the educational book by parents and autism service providers and (b) participation in a 2hour focus group session. A purposive sample of 13 participants were invited to review the parent information book and participate in one of three follow-up focus groups, where they were asked their opinions about the content, usefulness, and accessibility of the book.
The feedback from these focus groups suggests that parents and autism service providers are currently in need of a concise yet comprehensive psycho-educational resource at the time of diagnosis. Feedback found the book to be useful, accessible and, most importantly for parents, warm, friendly, and hopeful in tone. In addition, parents expressed a substantial need for more guidance and information regarding resources for their child than they are currently receiving.
Interventions tailored to the specific needs of parents during the diagnostic process are lacking. Based on these findings, the application of a concise and hopeful psycho-educational resource at the time of diagnosis, should be considered.
Evaluating “Kidney Friends Online”: An Interactive Online Peer Support Group for Adolescents with Chronic Kidney Disease
David Nicholas
Gail Picone
Annette Vigneux
The Hospital for Sick Children
Kelly McCormick
McMaster Children's Hospital
Andrew Mantulak
The Children's Hospital of Western Ontario
Michelle McClure
Ability Online Support Network
Radha MacCulloch
The Hospital for Sick Children
In this presentation the authors describe the findings of a multicenter study evaluating a 6-month online peer network for adolescents with chronic kidney disease (CKD). Online applications have the potential to offer a convenient and accessible forum for social support and information-sharing in managing health care conditions. For adolescents with CKD, face-to-face peer interaction may be impeded due to decreased energy, demands of care, and geographic dispersion.
This 6-month study sought to decrease social isolation and illness intrusion in daily living, and improve coping of participants. A sample of 24 adolescents between 11 and 18 years of age enrolled in the online network. They were invited to read and post messages on the online support network as desired. The researchers sought to explore (a) the effectiveness of an online network, b) participants' experiences and perceptions of the network, (c) the benefits/limitations of online technology for peer interaction, and (d) means by which adolescents convey support within this online context.
Evaluation of these topics involved (a) pre- and postintervention evaluation of variables in which social support is expected to effect change, (b) postintervention qualitative interviews in which participants' perceptions of the network are sought, and (c) transcript analysis, including quantitative and qualitative analysis of online discussion. This presentation will also address perceived benefits and challenges/limitations of the online therapeutic group, with a focus on qualitative findings and the integration of qualitative and quantitative methods and findings.
Advancing Interprofessional Practice in a Pediatric Context: A Framework for Change
David Nicholas
Bonnie Fleming-Carroll
Natasha Brownrigg
Margaret Keatings
The Hospital for Sick Children, Toronto, Canada
Despite longstanding recognition of the need for teamwork in clinical practice, finding new ways to ensure effective delivery of interprofessional practice (IPP) has been raised as an imperative for best practice. To date, there is a dearth of research and theory providing models of IPP specifically in pediatrics, and there is a corresponding lack of empirically demonstrated change methods for incorporating IPP advancement in pediatrics. This presentation provides a framework in which IPP systematically has been advanced at the Hospital for Sick Children in Toronto, Canada. Through an iterative yet sequential appreciative inquiry approach of recognizing strengths, and building innovation in ongoing practice, advances in IPP have been fostered and evaluation strategies demonstrated.
Elements of this approach, contextually presented within a theoretical and practical framework, include developmental steps (change team formation, information gathering, priority determination, IPP audit, pilot innovation, and theoretical development). Each element will be examined and examples given to demonstrate the application and evaluation of IPP advancement within this pediatric acute care context. Implications, lessons learned and recommendations will be provided. An emerging model of IPP integration in pediatrics will be presented.
“Just for Dads”: An Evaluation of an Online Support Group for Fathers of Children with a Brain Tumor
David B Nicholas
Ted McNeill
Gordon West
David Brownstone
Eric Bouffet
Ross Hetherington
The Hospital for Sick Children, Toronto, Canada
Children and adolescents comprise a small proportion of the brain tumor population. Although it has been reported that such a diagnosis induces a range of emotions for parents, there is a major gap in research about the impact on fathers and ways of providing effective and accessible clinical support to them. This qualitative study explores fathers' experiences and perceptions about participating in an online support group, and seeks to identify the benefits and limitations of online technology for group process. An evaluation of an online peer support group for fathers of children with a brain tumor was developed and subsequently evaluated.
Nineteen fathers were recruited to participate in a 3-month online fathers' network. Each participant, a father of a child with a brain tumor, was encouraged to post at least one comment, inquiry, or idea per week focusing on caring for their child, what this means to fatherhood, and strategies used in moving forward. Three online questionnaires were completed both at pregroup and postgroup stages. Following the online peer support group, a purposive subsample of fathers was asked to participate in semistructured qualitative interviews exploring their experience in using the peer support network. Also, online transcripts of network discussions were subjected to content analysis. The results of this study will provide clinicians with knowledge about the needs of fathers who have a child with a brain tumor, and potential means for providing online support in augmenting clinical and supportive practice.
The Use of the Feminist Biographical Method in Nursing Research
Donna Freeborn
Catherine Coverston
Brigham Young University
The feminist biographical method is a qualitative research method that combines a feminist approach with the biographical method. This in-depth interpretive methodology has been used successfully in other disciplines but no articles using this method in nursing research were identified in databases. The method provides rich, in-depth exploration of individual narratives of participant's lives within their social milieu. This method will be described using research on the life experiences of women with cerebral palsy who have experienced mistreatment.
Feminist researchers often provide a high level of sensitivity to the process by encouraging listening to women's voices and understanding their lives relative to gender, social class, culture, and power. The feminist biographical method uses feminist process to conduct two different types of in-depth interviews: In the first, participants chose and direct the topics; in the second the researcher chooses and directs the topics. Participants are also encouraged to include pertinent journals and writings, cultural texts, and media relevant to their lives and cultures. Data analysis of interviews, personal writings, and cultural texts employs two levels of analyses: across-cases analysis, in which themes and relationships between themes are identified across each of the participants' narratives, and within-case analysis, in which new themes are identified and personal factors shaping themes and experiences are identified within each woman's narrative. Data are presented in ways that tell the stories of the participants, requiring sensitivity in the telling of the story to protect the participant's identity.
Iranian Mothers' Perceptions of their Lives with Children with Mental Retardation: A Preliminary Phenomenological Investigation
Elaine Mordoch
University of Manitoba
Sima Kermanshahi
Zohreh Vanaki
Fazllolah Ahmadi
Anoshirvan Kazemnejad
Parviz Azadfalah
Tarbiat Modares University
This phenomenological study explored Iranian mothers' lived experiences of having a child with mental retardation (MR). The study purpose was to understand the essence of this experience within Iranian culture. The research questions were: How do mothers perceive having a child with MR? How do mothers manage this experience? What feelings do mothers experience?
A purposeful sample strategy selected knowledgeable participants willing to reflect on the phenomena. Six mothers whose children attended a school for exceptional children participated in in-depth interviews. Mothers were between the ages of 28 and 42 years, and their children were boys between the ages of 6 and 12 years. The six major themes were Challenging the process of acceptance, Painful emotional reactions, The interrelatedness of the mother's health and the child's well being, Struggles to deal with oneself or the child, Inadequate support from the family and community, and Anxiety related to the child's uncertain future.
Conclusions. Mothers were parenting their children with minimal knowledge of the condition or how to optimally care for the child. Mothers experienced limited support from health and social services and within their families. This contributed to their feelings of isolation. Some mothers' spiritual beliefs helped them manage their situations; however, for most mothers, gendered child care expectations and the societal stigma against MR compounded their feelings of struggle. Ongoing cross-cultural research on mothers' experiences will identify universal struggles and unique differences within the lived experience of having a child with MR and inform meaningful strategies to assist mothers and their children.
Meaning of Home for Persons with Dementia at the Point of Relocation to a Residential Care Facility: “It's Not Just Bricks, It's Your Home, Your Family”
Faranak Aminzadeh
Regional Geriatric Program of Eastern Ontario
Frank Molnar
Geriatric Assessment Unit
Housing satisfaction is an important component of well-being in later life. Persons with dementia (PWD) are often faced with the reality of multiple housing transitions. This paper is part of a larger qualitative prospective study aimed at understanding the meaning of “home” and “relocation” for PWD at the point of relocation to a residential care facility. The findings are based on the data from in-depth baseline interviews with 16 PWD and the focus is on identifying the deeper experiential significance of sociophysical home environment. The concept of home had a profound personal meaning for the participants. In particular, the prospect of relocation seemed to bring to the focus the strong bonding with their home and the many meanings, attachments and activities associated with it. However, with the changes in their life circumstances (decrease in functional competence, loss of spouse caregiver, etc.), participants experienced a progressive loss of positive experiences associated with living at home. For many, their home was not only a locus of comfort, control, independence, initiative, choice, and connection but it also increasingly became a source of frustration, disappointment, dependency, intrusion and isolation. This new reality for most participants resulted in a gradual “disruption” of their “emotional home,” ultimately resulting in the decision to search for an alternative living arrangement to “re-create home.” A better understanding of the meaning of home and relocation for PWD can help develop interventions to optimize housing decisions and to promote successful adaptation to new living environments.
Reduction of Unnecessary Patient Transfer to Hospital: Nurses and Paramedics Working in Partnership
Julia Williams
Ina Machen
Angela Dickinson
University of Hertfordshire
Dono Widiatmoko
University of Salford
Sally Kendall
University of Hertfordshire
In line with the U.K. government's policy to provide more appropriate responses to non–life-threatening emergency ambulance calls, an Ambulance Trust and Primary Care Trust piloted an innovative new service whereby a paramedic and community nurse were dispatched together to attend low-priority emergency calls.
The study incorporated both qualitative and quantitative elements in the research design. This poster focuses on the qualitative component of the study which aimed to explore the experiences and perceptions of the patients, nurses and paramedics involved in this pilot service. Focus groups were used to explore nurses' and paramedics' experiences and understanding of this new service, whereas patients participated through the use of individual interviews. All events were transcribed verbatim and analyzed using an interpretive approach.
Findings indicated that both of the health care professions had different knowledge and skills that they brought to the healthcare setting and this enabled the pilot service to provide alternatives to prevent unnecessary conveyance of patients to hospital. Patients' expressed high levels of satisfaction with the service, and staff experienced increased job satisfaction, learned new skills and increased their knowledge of each other's roles.
In conclusion, the addition of a nurse in the emergency ambulance response team enabled people to be treated at home providing a more appropriate response for many patients. Teamwork and professional development were enhanced and there is potential for cost savings by preventing the unnecessary transfer of patients to hospital in appropriate cases.
Students' Experiences of Undertaking a Foundation Degree in Paramedic Science: An Exploratory Study
Julia Williams
University of Hertfordshire
Recent years have seen growing demand in the United Kingdom for greater flexibility and expansion of roles within allied health professions including that of the paramedic. Along with changes in the role of the paramedic, there have been concomitant developments in the preparation for registration of these practitioners, including validation of foundation degree program, with an evident shift from a “training” to an “education” paradigm.
In the absence of other studies, this research sought to explore students' experiences of undertaking a foundation degree in paramedic science and their perceptions of the strengths/limitations of this preparation route for registration with the Health Professions Council. Reflexive interviews were undertaken with a volunteer sample of students. The data was subject to rigorous processes of interpretative thematic analysis that facilitated identification of recurrent patterns and themes.
Findings highlight the core strength of the program lies in the integration of employment with study blocks in Years 2 and 3, although participants identified competing demands on their time both from employers and the university. The benefits of being primarily an employee included the focus on competency development as well as having immediate opportunities to put the knowledge base acquired during the study weeks into practice. Unsurprisingly, avoidance of accumulation of financial debt through being paid a salary was seen as positive. All participants support higher education routes for professional registration stressing that increased levels of knowledge and enhanced skill acquisition are essential if paramedics are to meet the demands on emergency healthcare services in the United Kingdom today.
Understanding the Lived Experiences of Physically Active Women with Knee Osteoarthritis
Jane Stewart
P.K. (Tish) Doyle-Baker
Lynn Meadows
University of Calgary
Osteoarthritis (OA) is a degenerative disease that affects the cartilage at the end of bones forming a joint. More women than men are affected by OA, and women with OA are less likely to be physically active. Research evidence shows that resistance and aerobic exercise can be beneficial for improving the quality of life for those with OA. There is a population of individuals with knee OA who do manage to exercise and continue to participate in sports. The purpose of this phenomenological study is to understand the lived experiences of physically active women who have a diagnosis of knee osteoarthritis.
Women meeting the inclusion criteria: (a) ages 35 to 55 years and (b) currently physical active most days of the week participated in individual audio recorded in-depth interviews. Recursive reading of the transcriptions and identifying statements of meaning were used in the analysis to understand the essence of women's experiences.
The women reflected on their loss of previous levels of physically active. However, they revealed that through the use of lower intensity activities such as walking, they were able to increase their intensity of physical activity, return to previous activities, or explore new forms of activity. The women also were aware of the need to be physically active to control pain, maintain weight, and improve muscular strength. The insight from these women can provide guidance for future program planning and implementation in physical activity and chronic disease management.
Young People's Response to Smoking Prevention Campaigns
Kerry Woolfall
Harry Sumnall
Lorna Porcellato
Liverpool John Moores University
Dylan Jones
Lesley Owen
National Institute for Health and Clinical Excellence
Smoking, as the primary preventable cause of death in the United Kingdom is a major public health challenge. As the majority of smokers initiate use prior to the age of 18, prevention efforts that target children and young people are imperative to prevent uptake and to foster healthy lifestyle choices. The study explored young people's knowledge and attitudes towards the use of media in smoking prevention including new media formats, and the comprehension and appreciation of health promoting messages including antismoking campaigns.
Both qualitative and quantitative research methods were used, including screening questionnaires and innovative focus groups incorporating an interactive electronic voting tool; 852 young people aged between 11 and 17 years were screened for existing smoking behaviors, and 166 young people were selected to take part in 21 focus groups.
Study findings demonstrated that young people regularly accessed a range of media sources which may all provide suitable means of delivering health promotion messages. New media formats, including the Internet, were viewed as effective means of delivering campaigns to young people as long as they were interactive and have stylish and modern designs. In terms of message content, the long-term effects of smoking were the most appropriate message for prevention campaigns targeting the < 18 age group. Nonsmokers were much more likely to believe that prevention campaigns would affect smoking behaviors and knowledge than smokers. Positive smoking attitudes were the only significant predictor of smoking status identified.
Preventing Young People's Access to Cigarettes
Kerry Woolfall
Harry Sumnall
Lorna Porcellato
Liverpool John Moores University
Dylan Jones
Lesley Owen
National Institute for Health and Clinical Excellence
Although limiting access to tobacco products through legislation is a well-established intervention in the prevention of smoking uptake in young people, its effectiveness is inconclusive. In October 2007 legislation was amended to increase the legal age to purchase tobacco products in England from 16 to 18 years, which mirrors youth access policies in countries such as the USA, Canada, Australia, and New Zealand. This study explored young people's knowledge and opinion of the change in legislation and investigated how they accessed cigarettes, including what strategies young people used to circumvent legal restrictions.
Both qualitative and quantitative research methods were used, including a review of literature and innovative focus groups incorporating an interactive electronic voting tool; 852 young people aged between 11 and 17 years were screened for smoking behaviors, and 166 young people were selected to take part in 21 focus groups.
Findings indicated that despite legislative attempts to prevent young people from purchasing tobacco products, the most common means of accessing cigarettes within our sample was to purchase them from shops. Regular smokers aged 16 to 17 years encountered point-of-sale access restrictions less frequently than other groups. In more deprived urban areas, young people were purchasing tobacco from adults who were selling illegal black market cigarettes from private residences at lower than retail cost. Access restrictions are impeded by a young person's ability to access tobacco products from “social sources” such as friends, family members, and strangers.
Midwives versus Peer Support from Mothers in the Postnatal Ward: Which Is Better?
Lorraine Andrews
Joan Lalor
Trinity College Dublin
Devane Declan
National University of Ireland, Galway
Postnatal care has been described as the Cinderella of midwifery practice, with relatively little research interest when compared to antenatal and intrapartum issues. In the western world, increasingly women spend less time in hospital, and midwifery care is being compacted into fewer hours as time progresses. A grounded theory study of 10 first-time mothers was conducted to explore the information resources available in a tertiary maternity unit after the birth of their first baby. The theoretical perspective of symbolic interactionism was used to explore women's encounters with their caregivers and with other mothers in the ward. Women did not always perceive midwives to be the best source of information regarding the care of their baby. Midwives spent little time addressing the emotional aspects of transition to motherhood, leading women to seek support for other mothers in their immediate vicinity. New mothers perceived that midwives were too busy to be interrupted, and therefore support was sought elsewhere Other mothers spoke openly of issues such as baby blues, offering new mothers a sense of normality and permission to open up. More experienced mothers were prepared to be role models, standing side by side with new mothers, guiding and supporting them as they developed key skills such as feeding, bathing, and position for sleeping. However, the information given through this method of peer support is not always accurate. Midwives need to develop mechanisms of communicating effectively and openly with women if we are to maximize our opportunity to support transition to parenthood.
Understanding Parents' Beliefs and Practices Regarding Their Child's Oral Health: A Cross-Cultural Study
Maryam Amin
University of Alberta
Early childhood tooth decay is the most prevalent childhood disease worldwide that profoundly affects the quality of life of children and their families. Despite continued efforts to better understanding the etiology and advances in prevention of the disease, children from disadvantaged communities continue to experience high levels of the disease. There is a critical need for development of more acceptable and effective preventive interventions. However, first, we need to understand factors that place children at risk. With this aim, we are proposing a qualitative study to explore parental beliefs, attitudes, and behaviors with regard to their child's oral health and their perceived barriers to adopting and maintaining dentally healthy behaviors from a cross-cultural perspective. Participants will be recruited from Multicultural Health Brokers Co-operative. This agency provides outreach to approximately 1500 immigrant and refugee families per year. First, all 42 health brokers from 16 communities and the three team leaders will be invited to focus group interviews. The research questions, the logistic of recruitment, and the study design will be explored in these focus groups. The study instruments as well as the interview guide will be developed and translated to different languages. The brokers will contact and recruit the potential participants and they will also be trained by the PI to facilitate the focus group interviews. The interviews will be recorded, transcribed, and translated to English for analysis. Data collection and data analysis will be done simultaneously. Interviews will continue until saturation will be reached.
Beliefs and Practices of Chinese Parents Regarding Their Child's Oral Health
Maryam Amin
University of Alberta, Edmonton, Canada
Rosamund Harrison
University of British Columbia, Vancouver, Canada
A qualitative study was conducted to develop a grounded theory to enrich our understanding of the processes that influence parental adoption of “dentally healthy” behaviors after their preschool child's general anesthetic dental surgery. Twenty-six interviews were completed with 9 English-speaking and 9 Chinese-speaking parents at various time periods after their child's surgery. Our original analysis revealed some differing beliefs and attitudes between Chinese and non-Chinese parents; a further analysis explored in additional detail the Chinese parents' beliefs, attitudes, and behaviors regarding child oral health. Chinese differed from non-Chinese parents in four categories: perceptions of oral health, perceived risk factors for dental decay, attitudes towards professional care, and parenting style. Chinese parents felt that they should take their child to a dentist only when the child had a problem. Although they had a reasonable understanding of the commonly understood causes of dental decay, Chinese parents talked in detail about causes of decay beyond their control such as genetics and their child's general health. Only Chinese parents mentioned bacteria as a major risk factor for dental decay. Dependence on health professionals rather than on parental actions was a theme expressed primarily by Chinese parents. Furthermore, these parents were concerned about their child simply getting enough to eat and, therefore, were permissive in their child's food choices. The differences that we observed between Chinese compared to non-Chinese parents demonstrate a need to further explore parental beliefs and attitudes cross-culturally. This study was supported by CIHR Grant FRN 67817.
Needing to Be Normal: The Lived Experience of Chronically Ill Baccalaureate Nursing Students
Mary Ann Dailey
Kutztown University of Pennsylvania
What is the experience of having a chronic illness while caring for the chronically ill? Do these caregivers face unique challenges? If so, then are these challenges compounded when the chronically ill caregiver is a student nurse? Because research on chronically ill baccalaureate nursing students is limited, this study explored their lived experience.
Following institutional review board approval, purposive sampling produced 10 chronically ill BSN participants. Using the phenomenological method, verbatim transcriptions yielded theme clusters from which the narrative description of the lived experience evolved. Four major themes emerged as follows: (a) needing to be normal; (b) dealing with the behaviors of family, friends and faculty; (c) enduring the restrictions of illness; and (d) becoming a caregiver. Delineation of the major themes generated 13 aspects, including, but not limited to, portraying illness as a part of self, refusing to allow the illness to win, uncovering a universal lack of understanding, bonding with the chronically ill, and developing an inner strength.
Previous phenomenological research and the current study demonstrate that nurturing increases self-esteem, personal worth, and the desire to support the needs of others. Though illness can cause pain, stress, and fatigue, it also creates an inner strength and a heightened awareness of self that enables a deeper understanding about the plight of others. Sharing this knowledge with peers creates mentoring moments that promote personal and professional growth, and mutual understanding. Information gained from this study can promote more effective faculty behaviors toward students coping with chronic illness.
Introduction to Qualitative Methods for Health Services and Policy Research: An Online Course
Nora Jacobson
Centre for Addiction and Mental Health
Cyberspace has become a pedagogical space for instruction in qualitative methods. This poster will describe the form and content of an online introductory course in qualitative methods offered to graduate students in the health sciences. It will discuss how both instructor and students experience this mode of course delivery, and reflect on the ongoing challenges of teaching, and learning, qualitative methods in a virtual environment.
Grandparents and Siblings of Children with Congenital Heart Disease: “Working Jake into the Situation”
Vinitha Ravindran
Bonnie Wademan
Sandra MacPhail
Gwen Rempel
University of Alberta
An increasing number of grandparents are involved in a parental or near-parental role with their grandchildren. Most research concerns grandparent involvement due to parent issues (e.g., teen pregnancy, mental illness, addiction). Some research addresses grandparent involvement when the grandchild is ill. Grandparents' “double concern” for both their adult children and their ill grandchild is reported in the literature. The purpose of this presentation is to describe a third concern for grandparents –the sibling(s) of their sick grandchild. In this grounded theory study, we interviewed 15 grandparents of children with congenital heart disease (CHD) who had siblings. Open and selective coding, and theoretical memoing were used for data analysis with two processes emerging: Being there as substitute parents and Safeguarding relationships. Grandparents assumed a parent role with the toddler and preschool-aged siblings by attending to their daily care routines, recreational and play times, and relational needs while parents were occupied with their sick and hospitalized infant. Grandparents were aware of potential emotional trauma for siblings and sought to maintain some degree of normalcy despite prolonged separation from their parents and repeated exposure to unfamiliar environments (e.g., hospital wards, hotels). The grandparents' concerted efforts to sustain the parent-child and child-sibling relationships were also striking. Grandparents articulated their role of reminding the parents that they had another child besides the child with CHD. Our findings extend the concept of “double concern” to “triple concern” and raise questions regarding the developmental, social, and emotional needs of siblings of children with complex congenital disorders.
The Process of Postpartum Adjustment
Stephanie Knaak
University of Calgary
In recent years, increasing attention has been given to understanding the experiences of postpartum depression. However, there has been comparatively little exploration of postpartum adjustment more generally, as experienced across the full spectrum of emotional wellbeing. As such, this paper is a discussion of the results of a grounded theory study of mother's postpartum experiences from a range of emotional states, from mostly/mainly happy, to clinically depressed. The theoretical model I discuss is based on in-depth interviews with 33 mothers from the greater Edmonton area. The analysis captures a total of 45 different postpartum experiences. The findings are discussed as a theoretical model which provides greater insight into how and why mothers' adjusting experiences vary.
The study is organized around two questions: What do mothers experience in the weeks and months after having a baby? and What are mothers' own understandings of why they experienced what they did? The analysis reveals a model of adjustment, a process of self-change characterized by six main tasks: connecting with the baby, developing competence and confidence in one's abilities as a mother, rebuilding day-to-day life, overcoming social isolation, integrating/making decisions about paid work, and reconciling expectations and reality. The analysis further reveals the identification of six major adjusting resources: prioritizing self-care, having low situational stress, having enough help, feeling understood, feeling physically/emotionally ready for the baby, and having realistic “core” expectations/beliefs. Mothers describe these resources as the main things that help or hinder their abilities to accomplish the work of adjusting.
The Meaning Given by the Health Professional for Obstetric Labor and Humanizing Delivery
Suzete Maria Fustinoni
Alessandra dos Santos Mabuchi
Universidade Federal de São Paulo
The central proposal of this research was understand the meaning that the health professional gives for the humanization of the obstetric labor and birth. In this study the researchers used a qualitative design, with the phenomenological perspective. The collecting information process was obtained from 11 professionals, doctor and nurses, who took care of women in labor in the hospitals of Sao Paulo, Brazil. From the analysis of the data emerged two phenomena, Understanding humanization of the obstetric labor and birth as a set differentiated of assistance measures and Identifying imperfections in the search for the humanization of assistance, that when synthesized had given origin to the biggest phenomenon of the professional experience: Living the disharmony between theoretical and practical in the search for the humanization of assistance. The study evidenced that still has discord between the concept for birth's humanization and the professional practice. The humanization continues being a governmental politic far of to be efficient, not only for the infrastructure deficient or financial scarcity, but for the little contact with the thematic, depersonalizing, and dehumanizing the assistance.
Understanding Paradox: The Parallax of Methamphetamine Addiction and Recovery
Roxanne Vandermause
Washington State University Intercollegiate College of Nursing
Stephen Chalmers
Laurilyn Harris
Sheila Kearney-Converse
Linda Kittell
Pauline Sameshima
Washington State University
Considered to be one of the most dangerous drugs of abuse, methamphetamine is spreading across the country with alarming devastation to persons and communities. National groups and community stakeholders are concerned, intervention research and prevention efforts are underway, yet there is little scholarly work that focuses on the perspective and experience of current or past meth users. This multidisciplinary research project was undertaken to raise awareness about the deeply personal experience of methamphetamine addiction and recovery. Blending the sciences and humanities, we used a multimethod, multimedia approach to (a) represent and interpret the experience of one woman, a 55-year-old, 6-year recovering methamphetamine addict and dealer, and (b) establish a rigorous multidisciplinary, multimethod methodology for understanding meaning. Intensive, iterative analyses of a series of audiotaped, transcribed interviews led us to understandings of addiction, homelessness, incarceration, personal loss, and recovery. Narrative, visual, poetic, dramatic, and musical representations, using a robust interpretive approach, are presented in this multimedia poster presentation. Results of this research will be used to raise awareness among diverse communities of scientists, students, civic leaders, health care professionals, and people struggling with addictions to illuminate needs for personal, social, and educational change. From these data we hope to develop strategies for education and treatment that can be tested and applied to prevention and intervention efforts and complement the growing body of work dedicated to addiction and recovery. Our collaborative interpretive methodology will be applied to other highly contextual and recalcitrant social problems.
ABO-Incompatible Heart Transplantation: A Parents' Perspective
Samantha Anthony
David B Nicholas
Melissa Kimber
Ashley Teschner
The Hospital for Sick Children
Lori J. West
University of Alberta
The recent discovery that infants with heart disease can be transplanted safely with an ABO mismatched organ revolutionized infant heart transplantation (HTx) (West et al., 2001). Despite this radical advancement in the field of pediatric HTx, little research has focused on the psychosocial impact of ABO-mismatched Tx on these families. This exploratory study reviewed decision-making processes and the psychosocial experiences of these parents and their families. Eight families of the initial group of infants who underwent ABO-incompatible HTx were qualitatively interviewed. Semistructured interviews explored both pre- and post-Tx family experiences. Results indicate an array of complex experiences and impacts for families. Parents associated their experiences with presence or lack of choice surrounding procedures, and conditions of communication. They also described disruption in family life, a process of normalization, and the development of adaptational strategies. Support, proximity to hospital care, and expectations of well-being influenced parents' level of distress. Clearly families experienced profound and idiosyncratic psychosocial stressors throughout the Tx experience. Clinical implications suggest the need for flexible resources that allow families to negotiate decision-making with as much support and information as possible. These results provide clinicians with a framework for supporting and guiding parents in Tx decision-making, and managing parent and family emotions and responses. A model enveloping parental transition from “normal” family life to an interruption of normalcy, and later, to an imposed “new normal” will be presented as will implications for research and clinical practice.
Understanding the Experience of the Crohn Disease's Patients
Tania A. Moreira Domingues
Roberta Soares Sarlo
Carolina Barreto
Universidade Federal de São Paulo
Crohn disease (CD) is an inflammatory bowel disease of unknown genesis. The symptoms are variable and include periods of remission as well as periods of exacerbation. CD can cause inconveniences both during the patient's treatment as well as concerning the patient's psychological status. Both inconveniences can have impacts on the patient's social life. The increase in CD incidence helps nurses to get closer to the patients, because of an increased contact during hospitalizations and outpatient treatments. It is believed that not only the clinical and surgical treatments should be established for such patients, but also assistance should be provided to take into account facts that the patients believe as being important for their own improvement. Thus, to understand in a better way the disease's meaning for these patients, we opted for qualitative research with a hermeneutic approach. Eight patients of both sexes and aged between 20 and 59 years old, with a confirmed diagnosis of the CD, were interviewed at the gastroenterology ambulatory of Hospital São Paulo. The results analysis was made based on a category identified as Changes in the Life Project. The category's main changing factors were food, fear, chronic disease, lack of freedom, proper nutrition, prevention of complications, and hope. Therefore, it is possible to understand that CD bearers present a unique way to adapt to the disease. To do so, they use a few strategies to overcome the difficulties, developing their own skills to move forward.
Understanding the Barriers and Facilitators to Adherence to Oral Chemotherapy in Hispanic Youth with Acute Lymphoblastic Leukemia
Wendy Landier
City of Hope National Medical Center
Cynthia Hughes
Evelyn Calvillo
California State University, Los Angeles
Nancy Anderson
University of California, Los Angeles
Deborah Briseno-Toomey
Leticia Dominguez
City of Hope National Medical Center
Alexander Martinez
California State University, Los Angeles
Cara Hanby Smita Bhatia
City of Hope National Medical Center
Improvements in therapy for pediatric acute lymphoblastic leukemia (ALL) have resulted in 5-year survival rates that now exceed 85%. However, 5-year survival for Hispanics is significantly lower than that for Caucasians, representing a substantial disparity in health outcomes. Unlike other pediatric cancers, a critical component of the curative regimen for ALL is a prolonged “maintenance” phase of self- or parent/caregiver-administered oral antimetabolite chemotherapy taken at home on a daily basis for approximately 2 years. Despite the life-threatening nature of pediatric ALL, there is substantial evidence that nonadherence to daily oral chemotherapy occurs in 10% to 50% of patients. Thus, youth with ALL who fail to adhere to oral chemotherapy may be at increased risk for leukemia relapse. The overall objective of this study, currently in progress, is to develop and validate a grounded theory-based model to explain the reasons for adherence and nonadherence to oral chemotherapy in Hispanic youth with ALL and to identify culturally relevant and acceptable interventional strategies to improve adherence. Semistructured interviews are currently being conducted with Hispanic youth who have ALL and their parents/caregivers, and with a referent group of Caucasian youth and their parents/caregivers (16 interviews completed to date). Initial analysis of the interview data will be presented. Following completion of the initial analysis, focus groups will be held to verify the theoretical model and potential interventional strategies identified in phase one. The overall goal is to provide a foundation for development of theory-based, culturally relevant interventions to improve adherence to oral chemotherapy in Hispanic youth with ALL.
Seeing the Patient Unprepared to Face the Transplant: The Mobilizing Epiphany of the Nurse
Thais Fernanda da Rocha Santos Castelhano
Maria Clara Cassuli Matheus,
Universidade Federal de São Paulo
The aim of this study was to understand how the sensitization of the nurse occurs in order to take care of the transplanted patient. The symbolic interactionism and the Interpretative were used as the theoretical and methodological reference. Out of the analysis of the biographical narratives of 9 nurses who took care of patients transplanted in the hospitals of São Paulo - Brazil, it was possible to identify three representative themes of this experience: Feeling themselves unprepared in order to take care of the transplanted patient, Seeing the patients unprepared to face the transplant and Assuming to be nurse of the transplant. However, it is in the second theme that the epiphanies are evidenced, in other words, the nurses' biographical important experiences compose the following categories: Seeing that the patients are not conscientious on the choice of the treatment, Seeing the deluded patients, Having to guide the best possible way, Having to coexist with the suffering of the patient and Sharing with the patient's regret. The nurses change the meaning of caring influenced by the patient's needs. Also when they think about their performance they try to improve themselves mainly by taking extra specialization classes in this area in order to give the patients better conditions. Such conditions focus on the decision making process and on the fact that they will have to consciously live with the perpetual routine of care after the transplant.