Abstract
Perceptions of the Oldest Old About Engaging in a Rural Community: Implications for Health and Well-Being
Jeffery Adams, Massey University
Sara Napier, Auckland University of Technology
Stephen Neville, Auckland University of Technology
Communities that support the engagement of their oldest residents enhance the livability for all and support older people to age in place. Many older people prefer to remain living in familiar communities where they have established connections, and the evidence suggests these connections are particularly relevant in rural communities. Although engagement is known to be beneficial to the health and well-being of older people, little is known of how the oldest old engage in rural communities. To explore the perceptions of people aged 85 years and over about their engagement in Warkworth, a rural area in New Zealand, a qualitative descriptive methodology utilizing semistructured interviews was used. Fifteen participants aged between 85 and 93 years were recruited. Two themes were identified. Firstly, “getting there and back” identified mobility as essential for engagement, in particular being able to drive. Secondly, “places to go, people to see” embodied the important contribution social networks and belonging to groups made to engagement. Characteristics of the physical and social environment presented both barriers to and enablers for engagement. To support engagement, communities require appropriate infrastructure and resources. Options to support people aged 85 years and over to remain engaged in their rural community are discussed.
Risk and Resilience Among Chinese and South Asian Gay and Bisexual Men Living in Auckland, New Zealand
Jeffery Adams, Massey University
Stephen Neville, Auckland University of Technology
Gay and bisexual men (GBM) generally experience poorer health outcomes than men in general. In addition, migrant and ethnic minority gay men are considered to be at particular risk including for HIV acquisition. In New Zealand, the population of Asian GBM is increasing rapidly, but there is very little information available to understand how these men experience their lives and the implications of this for HIV prevention and health promotion more broadly. Interviews with 44 Chinese and South Asian GBM (migrant and locally born) were undertaken to identify areas of actual and potential risk for these men in achieving good health including sexual health. The research found these men had variable family support in relation to their sexuality, and this was typically driven by conflicting personal and family/cultural values and expectations. Many men were not well connected with other GBM and relied on gay social apps to make contacts. Some men reported coercion in sexual encounters and being compromised in their sexual decision-making. While the men had good knowledge about HIV and risky sexual practices, there was wide variation in HIV testing practices. Although many men reported experiencing very little discrimination in general life, a number reported considerable discrimination from within the gay community. These findings suggest there are a number of social conditions and norms which impact on these men’s health and well-being; and rather than just relying on individual resiliency to overcome these, it is also important to address them directly.
Text Messages to Educate, Engage, and Motivate: Using Text Messaging to Supplement Patient Care for Breast Cancer Patients on Endocrine Therapy
Soha Ahrari, Sunnybrook Health Sciences Centre
Carlo DeAngelis, Sunnybrook Health Sciences Centre
Over half of early breast cancer patients are prescribed endocrine therapy. Studies suggest that up to 50% of women do not adherence to therapy; most patients stop treatment prematurely. As health-care institutions do not have the human resources to monitor medication adherence closely in this population, alternative means of interaction need to be explored. We developed a theoretically informed text messaging program to monitor and encourage positive medication taking behaviors. We then interviewed women prior to program enrollment about their information and support-seeking behaviors regarding their breast cancer. After they received the program for 6 weeks, we then interviewed them again about their experiences. We used an interpretive description approach to characterize their experiences both before and after the program and aim to use the findings of this study to improve program delivery and meet the needs of this unique population.
Patient Experiences With an Alternative Approach to Medication Counseling for Oral Anticancer Therapies
Soha Ahrari, Sunnybrook Health Sciences Centre
Carlo DeAngelis, Sunnybrook Health Sciences Centre
Cancer treatments are increasingly shifting towards oral anticancer medications (OACMs). OACMs tend to have complex administration and handling instructions and require patients to understand and implement self-management concepts. Traditionally, medication counseling for these OACMs is a onetime occurrence which can be long, complex, and dominated by the health-care provider. This results in poor patient learning.
The aim of our study is to explore the medication experiences of metastatic breast cancer patients taking oral anticancer medications as we pilot a novel approach to medication counseling. The Sunnybrook Breast Cancer Centre in Toronto, Canada, has piloted a novel approach to medication counseling, providing both in-person and telephone counseling while the patient is on therapy. Breast cancer patients were interviewed and asked to describe their experiences. Interviews were audio-recorded, transcribed, and analyzed using an interpretive description approach. There are two themes that have thus far arisen out of the data. First, patients describe stronger relationships with their health-care teams as a result of these phone calls and feel they are receiving higher quality care. However, despite an increase in the number of interactions, patients continued to describe situations that had resulted from a lack of information or awareness of optimal self-management. This finding is of importance, as it will guide future work in improving patient communication.
We Make Everything Pretty Much Family Oriented Except for Bathroom Duties: Using Photo Elicitation to Explore Home Enteral Nutrition Experiences With Patients and Family Caregivers
Gladys B. Asiedu, Robert D. & Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic
Katherine Carroll, Robert D. & Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic
Joan M. Griffin, Robert D. & Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic
Ryan Hurt, Home Parenteral and Enteral Nutrition program, Mayo Clinic
Home enteral nutrition (HEN) is an effective life-sustaining therapy of providing nutrients for patients who are unable to meet their nutritional requirements. Provision of enteral nutrition at home has a significant impact on family dynamics, particularly on caregivers, whose assistance is crucial to patients who are often debilitated. We used individual or dyadic photo elicitation interviews within 2 weeks of tube placement to explore experiences of HEN patients (eight) and their caregivers (eight). Patients and caregivers were asked to take up to 10 photos of activities or items related to HEN and then were interviewed. The photos have both a material and symbolic significance that enabled participants to talk about their experience in a way that yielded a full understanding of what those experiences meant to them. A “layered analysis” of interview transcripts and photos (126) yielded findings that included patients’ and caregivers’ initial reaction of disinterest to an eventual acceptance, their perception of HEN as “shared experience,” and the challenges associated with those experiences. Participants’ reactions to HEN changed along the trajectory of patients’ disease and their inability to meet their nutritional needs by oral intake. We found patients and caregivers approached their “new normal” as a shared experience by creatively devising systems that work for them. While the representations symbolize how tube feeding is integrated well into social life outside of a health setting, family involvement comes with some boundaries for social situations. The findings from this study can be used for educational programs on tube feeding, particularly to alleviate the fear of tube feeding and by portraying it as promoting family life.
How Do Researchers Account for Their Engagement in Action Research? A Mixed Narrative Analysis Case Study
Artem Assoiants, University of Calgary
How action research (AR) transforms the action researcher is seldom a focus of inquiry itself. To address this previously unexplored phenomenon, I recruited participants currently engaged in professional practice (e.g., counseling, teaching, etc.) who had published a manuscript, thesis, or dissertation on their involvement with AR. I utilized narrative analysis to construct case accounts of three participants’ experiences out of data derived from interviews that focused on initial contact, highlights of engagement, and impacts on life and practice. By supplementing with a narrative thematic analysis, I found that AR is an environment that produces social change; at the same time, personal development, relationship building, and negotiation and coconstruction of activity all take place for both the researchers and coresearchers. I engaged in reflexivity to address my process reflections and developing understandings throughout the project. This study holds implications relevant to two fields: (1) in pedagogy, there is the potential benefit of enacting AR in scientist-practitioner programs to facilitate both research and practical skill development; and (2) in critical psychology, this study marks the beginning of an exploration of practical–critical (i.e., future forming) methodology, where AR is positioned as an exemplar.
Is Patient Engagement an Appropriate and Ethical Method for Cancer Care Reform? Emerging Findings From a Grounded Theory of Patient Empowerment
Jonathan Avery, University of Ottawa
Doris Howell, Princess Margaret Cancer Centre (University Health Network, Toronto)
In Canada, cancer care continues to be fragmented. Even with universal health care, the availability and cost of cancer treatments remain under provincial control, and access to supportive care varies between cancer and community programs across the country. This has produced an unequal and uneven distribution of available treatments, services, and resources placing the health of survivors at risk. To reimagine and reform the cancer care system, patient engagement has been identified as a key goal and proposed as the fourth revolution for care alongside the personalized medicine and necessary to fix a broken cancer care system (CIHR, 2014; IOM, 2013; Schilisky, 2014). Defined as actions individuals must take to obtain the greatest benefit from the health-care services available to them, patient engagement is meant to empower survivors to be more involved and in control over decisions and actions affecting their health. Yet, when exploring the characteristics of patient engagement, most notably patient empowerment, critical questions arise regarding the role of patient engagement in cancer care reform. Drawing on emerging findings from a constructivist grounded theory of patient empowerment in cancer survivorship, this presentation will highlight themes related to patient (dis)empowerment that show that successful patient engagement requires an intricate balance between patient and provider communication and a well responsive health-care system. Without this balance, patient engagement runs the risk of not only being an unsuccessful strategy in cancer care reform but may also alienate or place undue stress onto those that we are trying to help—the cancer survivor.
When Numbers Don’t Add Up: Interpreting Findings From the Art Studios Impact Study
Catherine Backman, University of British Columbia
Natasha Damiano, University of British Columbia
Kaitlynn Pearmain, University of British Columbia
We used a mixed methods approach to evaluate the impact of art-making on mental health outcomes for adult clients participating in a psychosocial rehabilitation program (The Art Studios). While outcome measures of psychosocial recovery, self-esteem, and health status indicate no change over a 1-year period in a group of 60 clients, an individualized outcome measure showed statistically significant improvement in performance and satisfaction with performance as rated by clients. Qualitative data gathered from client focus groups (four groups, n = 21), in-depth face-to-face interviews with 12 clients and 12 staff, and participant observation over 1 year indicate a positive impact on client recovery attributed to the program, corroborating and extending the scores from the individualized outcome measure. Interestingly, qualitative data speak to changes that are “immeasurable” in terms of enhanced socialization and skills for daily life, skills that are fostered by the safe environment provided by staff and volunteers within the structure of art classes that motivate clients to engage with others. We discuss our interpretation of these findings focusing on what narrative data tell us that the numbers do not. We also provide examples of how qualitative data tell us as much about the therapeutic approach and context as the health outcomes we seek to understand. While this study has particular relevance for understanding the use of art-based practices in a community psychosocial rehabilitation program, it may also be relevant to understanding the impact of meaningful or creative activity on health and well-being outcomes in other settings.
The Experiences of Patients Undergoing a Virtual Cardiac Rehabilitation Program
Davina Banner, University of Northern British Columbia
Daman Kandola, University of Northern British Columbia
Dan Horvat, University of Northern British Columbia
Joanna Bates, University of Northern British Columbia
Scott Lear, Simon Fraser University
Cardiovascular disease (CVD) continues to be a major global health concern and is associated with high human and fiscal costs. CVD management is complex and patients require ongoing management, multiple medications, and targeted education. Cardiac rehabilitation programs (CRPs) are multidisciplinary programs that provide secondary prevention to modify risk factors and improve health outcomes. Despite the known benefits, the uptake of such programs is poor. Geographical location is a key factor known to influence attendance. To address this, we undertook a 16-month mixed methods randomized controlled trial of a virtual CRP (vCRP) with patients living in small urban and rural communities without access to standard CRP. As part of this, semistructured interviews with 22 participants were undertaken and analyzed using a qualitative descriptive approach. Maximum variation sampling was employed to promote a diverse sample and to explore experiences in high and low users. Participants who completed the vCRP experienced both clinical improvements and a high level of satisfaction. Participants described feeling more accountable and were more motivated to adopt healthy lifestyles practices. Furthermore, some participants felt more able to communicate with their health-care providers and liked being able to access a wide variety of professionals without the need for travel. Poor computer literacy and lack of time were the key factors associated with low usage. Overall, the vCRP was described as an accessible, appropriate, convenient, and effective way to deliver cardiac rehabilitation. Further research to explore the widespread integration of virtual programs in other patient populations would offer important insights and opportunities.
Managing Atrial Fibrillation in the Emergency Department: Physician Experiences
Davina Banner, University of Northern British Columbia
Janet Curran, Dalhousie University
Ratika Parkash, Dalhousie University
Kirk Magee, Dalhousie University
Jeff Healey, McMaster University
Ian Graham, Ottawa Hospital Research Institute/University of Ottawa
Over 350,000 people in Canada are known to have Atrial Fibrillation (AF)—a serious arrhythmia characterized by irregular atrial activity. AF is a “growing epidemic” that profoundly affects morbidity and mortality. AF is associated with advanced age, obesity, and chronic disease and can result in serious complications such as stroke. In the emergency department (ED), AF may be identified following a stroke, in the event of hemodynamic instability, or found by chance in an asymptomatic patient. Clinical management is time- and resource-intensive and patients require assessment of stroke risk, education, and frequently the use of anticoagulation. Despite known best practices, many patients do not receive anticoagulation or access timely follow-up care. To understand this further, we undertook focus groups with a convenience sample of 24 physicians from three EDs in British Columbia, New Brunswick, and Nova Scotia. Data were analyzed thematically guided by the theoretical domains framework. Overall, ED physicians were conflicted when managing patients with AF in the ED environment and decision-making around anticoagulation was seen as most problematic. Participants expressed concerns relating to morphing roles and unclear lines of accountability, along with tensions relating to commission and omission when considering anticoagulation. In addition to treatment factors, ED physicians experienced time constraints that made it challenging to provide effective patient education or respond to varied health literacy needs. Analysis of the study findings revealed the fragmented nature of AF management and the need for further research to explore innovative solutions to improve the delivery of health-care services and patient outcomes.
Transformative, Exceptional Human Experiences at Music Festivals: A Transpersonal Phenomenological Exploration
Brittany A. Bannerman, University of Lethbridge
In this study, I investigated coresearchers’ accounts of mystical and transcendent exceptional human experiences (EHEs) and integration processes in the context of two music festivals. Accounts of EHEs have been previously studied as a general phenomenon but, with attendance at music festivals steadily rising, it is valuable to realize the impact of EHEs occurring in such environments. Existing research suggests that EHEs are transformative if they are adequately integrated into the experiencer’s life; therefore, it is crucial to learn about the impact of EHEs to equip psychologists and therapists with the ability to better comprehend clients’ EHEs and facilitate their successful integration. Six coresearchers who had attended the festivals and experienced an EHE therein were recruited and interviewed. Emergent themes were elucidated using a four-step, narrative immersion process, which I organized into three parts: entering mystical kingdoms, illuminating the EHE, and the essential gifts of the EHE. These parts explicated meaningful festival characteristics, triggers, and phenomenology of the EHEs, and the EHEs’ transformative effects and integration processes, respectively. I also found important overarching themes involving acceptance and surrender to the EHE, its transformative effects, and its integration process. The findings provide important implications for mental health and psychotherapy regarding EHE integration, guidelines for potential experiencers, and areas for future research.
“T” Is for Transformation: Reflections on an Enduring Element of Critical Ethnography
Jennifer Baumbusch, University of British Columbia
Transformative change is one of the enduring elements of critical ethnography, yet what is transformation? And how does it come about? In this presentation, I reflect on my experiences of conducting two critical ethnographies in residential long-term care facilities. These facilities are home to multiple groups including residents, their families, staff, and volunteers. Interactions have been portrayed as being steeped in power relations and the leveraging of multiple social positions by individuals and groups. All of these interactions take place within the institutional context, which exists within the broader sociopolitical atmosphere that shapes care practices in this setting. It is within this rich, multilayered context that critical ethnography unfolds. In my experiences, the seeds of transformation are unpredictable and cannot be forced. They typically initiate from those participating in the study rather than being initiated by the researchers. Like many strong plants, though, the roots need to take hold before the full picture of the transformation can be appreciated, which justifies the long period of immersion required by researchers using this methodology. Ultimately, the transformative element of critical ethnography can lead to health-care reform from “the ground” up.
Lessons Learned in Developing and Running a Student-Led Mentorship Program
Jennifer Bell, University of Alberta
Jennifer Hermann, University of Alberta
Concerns in graduate education include high attrition rates, reports of unmanageable stress levels, and a lack of collegial and faculty support for students. Fostering and maintaining close peer relationships in graduate school has been shown to mitigate these concerns, leading to more successful student outcomes. Specifically, mentorship programs have been demonstrated as having a positive impact on the graduate school experience. Drawing from our experiences as executive members of Mentor Us, a peer-to-peer mentorship program for graduate students in the Faculty of Nursing, we will share some of the lessons learned in the conception, implementation, and evaluation of a student-led mentorship program. In particular, we will discuss how our leadership structure, mentor training, matching of pairs, and targeting of specific student populations has evolved over the 3-year life span of the program in response to identified successes and challenges. Additionally, future directions of the Mentor Us program including a formal program evaluation using focus groups will be addressed. Graduate education reform that promotes sustained, quality relationships, community, and support among graduate students is relevant to all faculties and disciplines. This presentation will offer a unique student perspective on establishing, modifying, and growing your own mentorship program.
From Pragmatic Acceptance to the Fear of Decline: Older Women’s Physical Activity Narratives
Erica V. Bennett, University of British Columbia
Laura Hurd Clarke, University of British Columbia
Peter R. E. Crocker, University of British Columbia
Kent C. Kowalski, University of Saskatchewan
The physical realities of growing older, such as changes in appearance and body function, coupled with ageist cultural norms emphasizing youthfulness and health in later life may shape and constrain the physical activity experiences of older women. As such, narrative analyses of semistructured interviews with 21 women (42 interviews) aged 65–94 years were conducted to examine their physical activity perceptions and experiences throughout the life course. First time, interviews focused on physical activity during childhood/early adulthood; and second time, interviews on mid- to later life experiences. While declines in body function made physical activity more difficult as they aged, participants stressed the importance of pragmatic acceptance, which included modifying the type and intensity of their physical activities and adjusting their expectations to adapt and to retain hope and happiness. The women also shifted their reasons for being physically active throughout the life course; they primarily exercised to manage weight in earlier life, but in later life were physically active to maintain weight, health, and independence, and because they derived pleasure from these activities. At the same time, the women feared physical and cognitive decline and negotiated the tension between pragmatic acceptance and fear of decline by stressing the importance of personal responsibility for health through engagement in physical activity and healthy diet. Findings add to the physical activity and aging literature by highlighting the need to consider women’s physical activity narratives throughout the life course as they may change over time and have implications for identity construction and well-being.
Oh Yeah, I’m a Prostitute. So, Can You Check Me? The Costs and Benefits of Disclosing Sex Work Identity in Health-Care Encounters
Cecilia Benoit, University of Victoria
Michaela Smith, University of Victoria
Samantha Magnus, University of Victoria
Mikael Jansson, University of Victoria
This article considers both costs and benefits of disclosing sex work as a concealable stigma by analyzing health-care experiences of 218 adult sex workers in Canada. The results show that concern about being judged was a common reason for foregoing needed health care and that nearly one in four sex workers experienced discrimination in health-care settings. In the qualitative analysis, fear of judgment, believing that revealing their work identity was irrelevant to care and confidentiality concerns were the salient reasons for not disclosing. Among sex workers who did disclose their work to a health-care provider, most described benefiting at least once, and a slim majority described only benefits in response to disclosure. Benefits included increased trust and honesty within the patient–provider relationship, care that was targeted to reduce work-related health risks and enhanced continuity of care. It appears that sex workers have costs to bear but also benefits to gain from disclosing their sex work in health-care settings. These findings are discussed in light of the stigma and sex work literatures and conclude with implications for health care practice to improve equity for highly stigmatized group.
Stigma Creates Avoidable Trade-Offs Between Generalist Versus Specialty Health Care for Sex Workers
Cecilia Benoit, University of Victoria
Mikael Jansson, University of Victoria
Michaela Smith, University of Victoria
Samantha Magnus, University of Victoria
Sex workers experience barriers to accessing services that would mitigate health threats to themselves, their clients, and their families. Our interviews with a diverse/heterogeneous multicity sample of 218 adult sex workers across Canada in 2012–2013 included standardized questions on health, health-care utilization rates, unmet health-care needs, provider satisfaction ratings, experience of discrimination in the health-care system, and open-ended questions about health-care service interactions. Our results show that sex workers have poorer mental health, more frequent use of emergency hospital services, and greater unmet health-care needs compared to the Canadian population. While sex workers were most likely to seek services from general practitioners, specialized outreach health services were more highly rated, which workers linked to fewer experiences of stigmatization and discrimination. Thematic analysis of the qualitative data identified several needed improvements: (1) deeper understanding by health providers, especially GPs, of the structural stigma faced by sex workers in Canada and their diverse health concerns and (2) support for appropriate frequency of STI testing and other health services without discrimination. Trade-offs between universal and targeted programs can be reduced through improved standards of confidentiality. Normalization of care and standards at the systems level, and strengthening quality of relations at the practice level, will help to improve sex workers’ access to quality health care.
Navigating Medical Uncertainty: The Rise of Chronic Illness and the Transformation of U.S. Health Care
Lindsay A. Berkowitz, UC Berkeley
According to a 2010 Johns Hopkins Report, half of the U.S. population has at least one chronic illness and one quarter has multiple chronic illnesses, representing over 75% of health-care expenditures. The U.S. health care has been slow to adapt due to the complexity and cost of transitioning from acute- to chronic-focused care; however, rising costs from continually inadequate care have overtaken the costs of change, pushing institutions to address the issue more intensively in the last decade. These changes are multifaceted, and this study focuses on persons with multiple chronic illnesses as a central population who challenge and drive change in U.S. health care. In 19 interviews with people with multiple chronic conditions, I trace interviewees’ navigation of care to understand how their experiences connect with macrostructural changes in health care. I find that while literatures on the decline of medical authority and the rise of patient expertise capture the orientations of patients, the difficulties of being chronically ill and navigating a health-care system insufficiently adapted to their needs prevent being in charge of their own health care. This current organization of health care necessitates interaction with many medical paradigms, institutions, and information sources, and patients’ uncertainty and confusion causes them to shift between care options and medical expertise along several identifiable trajectories. Understanding how these patients navigate the complexity of their care is an important window into the interactions between actors and institutions that comprise the current reorganization of U.S. health care.
Recruitment Strategies for Dyadic Caregiving Research With Older Adults and Their Adult Children: Lessons From Two Studies of Remote Monitoring Technology Preferences in Home Care
Clara Berridge, University of Washington
Recruiting caregiver dyads for research is notoriously difficult, particularly when the caregivers are of the “sandwich generation” and supporting an older parent while working full-time in the labor market. Despite this barrier, research on new home care interventions like remote monitoring technology (e.g., GPS tracking and in-home sensors) requires a multistakeholder approach because the benefits, risks, and harms of remote monitoring fall differently to older adults and caregivers. Ethical implementation requires an understanding of the experiences of both older adults and their family caregivers when new forms of monitoring are introduced into a care relationship. In this presentation, I will describe a successful dyad recruitment strategy that I used for two studies of remote monitoring technology with low-income older adults and their adult children (N = 41 with 11 dyads and N = 28 with 10 dyads). I will discuss the role of trusted community organizations in dyad recruitment and the participant incentive, which was used in one of the two studies. I will also offer practical approaches for navigating the protective stance of older adults toward their adult children’s time and the protective stance of social workers toward their older adult clients. Older adults and adult children report significantly different preferences for how remote monitoring technologies are used, yet their negotiation of needs, resources, and risks is a relational practice. Findings from the two studies support the need for stakeholders’ preferences to be considered separately and in combination and comparison.
Closing the Gap: Translating Qualitative Health Research Into Interventions for Practice
Joan L. Bottorff, University of British Columbia
Gayl Sarbit, University of British Columbia
John L. Oliffe, University of British Columbia
Although qualitative researchers have provided important detailed and informative descriptions of health-related experiences, less attention has been given to translating these findings into innovative approaches for practice. The focus of this presentation is on describing a knowledge translation approach that was designed and used in a program of qualitative research exploring gender-related factors influencing pregnant and postpartum women and their partners in their efforts to reduce and stop smoking. As part of this research, we described male partners’ smoking patterns and the masculine ideals that emerged to both rationalize continued smoking and forge gender ideals about being a smoke-free father. While women have typically garnered most of the attention in efforts to address smoking during pregnancy and the postpartum period, cessation support for expectant and new fathers can also benefit fetal/infant health as well as men’s health in addition to supporting women’s cessation efforts. Given the lack of smoking cessation resources for fathers, we viewed our qualitative findings as an opportunity for a “knowledge to action” project. We designed and conducted consultations with groups of fathers to enlist their assistance in translating our findings into messages and strategies that could be used to support fathers’ cessation efforts. The approach used in the consultation groups to facilitate this process will be described, along with the strategies the team used to distill data into principles and men-friendly strategies that guided intervention development. Guidelines for using this knowledge translation approach in qualitative research programs will be offered.
Autoethnography of the Facilitation of a Self-Care Initiative: Dinner and Stories
Susan Breiddal, Victoria Hospice
Anne Bruce, Victoria Hospice
Helena Daudt, Victoria Hospice
Caring for people as they are dying is reported to be a stressful occupation. Confronting death and dying on a regular basis can contribute to physical, psychological, and emotional fatigue for professional caregivers. Education in palliative care often neglects strategies that mitigate stress and burnout when professional caregivers succumb to sadness, despair, and helplessness. Research into self-care practices suggests the need for conscientious and systematic support for caregivers which can be accomplished through creative processes such as storytelling. We will describe a qualitative inquiry into an innovative project called “Dinner and Stories” in which palliative care workers met in small facilitated groups to share creative nonfiction stories of caregiving experiences that have stayed with them. The aim was to explore the nature of unresolved difficulties caregivers experience in caring for dying patients and their families that may inform managers, researchers, and educators about the needs of staff. We triangulated qualitative methods of thematic analysis, dialogical narrative analysis, and autoethnography. In this presentation, we will focus on the process and outcome of autoethnographic analysis into the experience of facilitating these self-care events. We will present an autoethnographic narrative about facilitating, creating safety, trust, discussion, and fulsome engagement in storytelling and dialogue.
Capacity Building and Community Action: Implications of a Blended Participatory Approach
C. Susana Caxaj, University of British Columbia
Navjot K. Gill, University of British Columbia
For the past 2 years, we have worked in a small town in the interior of British Columbia (BC) to examine experiences of belonging as a pathway for mental health and well-being across diverse ethnocultural subpopulations. We were interested in developing an understanding of these processes as uniquely rural and nonmetropolitan because most research on belonging and mental health among diverse populations has focused on the experiences of groups in urban centers. In this presentation, focusing on our partnerships with an Indian–Canadian diaspora, we will outline the possibilities and complexities in developing rich qualitative findings that are both methodologically and ethically robust. We present here, a blended participatory action research and situational analysis methodology adapted to better respond to the local realities and partnerships developed through this research. First, we will illustrate how participatory action research principles and local knowledge enabled unique potential for capacity building and community action. Second, we will discuss the iterative process, including data analysis, by which qualitative research results can equally catalyze, hinder, and complicate project deliverables. Ultimately, we wish to showcase the ways in which methodological, substantive, and ethical outputs overlap in participatory and situational analysis research. We will use our current experience building off preliminary research results of “Finding a Space of Our Own” and follow-up research piloting community-based interventions to build culturally relevant capacities for connectedness and belonging as a key exemplar to illustrate these processes.
Examining the Delivery of Mental Health Services Using a Population Health Framework in Primary Care and Public Health Collaborations
Leena Chau, University of British Columbia
Ruta Valaitis, McMaster University
Charlyn Black, University of British Columbia
Mental illnesses are highly influenced by the determinants of health, which are the social, economic, and physical environments that contribute to an individual’s health and social status. Addressing mental health issues requires a population health approach to address the determinants of health and requires joint action across multiple sectors. The aim of this research is to understand how a population health approach, aimed at addressing the determinants of health, is used in primary care (PC) and public health (PH) collaborations to address mental health issues. This is a secondary analysis drawing on data collected through a multiprovince (BC, ON, and NS) study that examined factors related to strengthening primary health care through PC and PH collaboration. Focus group data from four cases that addressed mental health were used. A coding structure was developed based on the Public Health Agency of Canada’s population health framework and through inductive analysis. Data within the codes will be collapsed to form themes within and across cases. Data analysis will be completed In July 2016. Results on how PC and PH collaborations addressed mental health problems, including the extent to which a population health approach was employed to address the Social Determinants of Health (SDOH) and ways mental health service delivery can be improved, will be presented. This research can help provide insight at the program and policy level for PC and PH as well as other sectors related to collaborative strategies that can strengthen the delivery of mental health services by incorporating a population health approach.
The Art of Compassion: Exploring and Integrating Counteremotions
Charles Chenard, St. Stephen’s College
Through arts-based research, interviews, and facilitated discussions, this research explored how six volunteer participants were able to detect and integrate their counteremotions; those emotions represent a conflict between how we internally feel and experience an emotion and our actual presentation of ourselves to others because of social conditioning. Participants explored the eight basic emotions (joy, trust, fear, surprise, sadness, disgust, anger, and anticipation) and through the creation of art, self-reflection, and discussion became present to their experience of having a counteremotion. By exploring and unlearning previous negative beliefs about themselves, when experiencing a counteremotion, they found a more compassionate view of self-emoting. Through this process, five central components surfaced for uncovering and integrating counteremotions: lack of self-compassion, lack of congruency or a divided self, a search for our true self; a more compassionate self; and an emotional–spiritual experience. Learning self-compassion was another benefit of this artistic exploration of counteremotions. Through self-acceptance and emotional honesty, participants came closer to a truer self, more accepting of their counteremotion and of others.
Caregivers’ Lived Experience of Their Child’s Anaphylactic Reactions: An Interpretive Phenomenology
Rishma Chooniedass, College of Nursing, University of Manitoba
Beverley Temple, College of Nursing, University of Manitoba
Donna Martin, College of Nursing, University of Manitoba
Allan Becker, College of Medicine, University of Manitoba
Children with life-threatening food allergies live with the constant threat of a fatal reaction, and caregivers must be prepared to treat with an epinephrine auto-injector (EAI). Morbidity and mortality are associated with a delay or lack of epinephrine use, and it is well-documented that rates of epinephrine use during an anaphylactic reaction are alarmingly low. An interpretive phenomenology explored caregivers’ perceptions and lived experiences with prescribed EAI use for their child’s anaphylactic reaction. The purposive sample consisted of 10 caregivers of children under the age of 12, diagnosed with a food allergy, prescribed an EAI and who experienced an anaphylactic reaction within the last 2 years. In-depth, semistructured interviews were audio-recorded and transcribed verbatim. NVivo software was used to organize and manage the data and interpretive phenomenological analysis was performed. Six main themes emerged: life challenges, isolation, anxiety, hesitation, guilt, and influence of health care. Caregivers explained the multiple life challenges and feelings of isolation. During reactions, caregivers identified anxiety and hesitation that lead to subsequent guilt. They shared an uncertainty in discerning if the child was experiencing anaphylaxis, which led to waiting for the situation to spontaneously improve. Some participants shared that handling reactions correctly provided them with confidence to treat subsequent reactions. Witnessing the rapid effects of EAI and receiving positive support from health-care providers further facilitated caregivers’ abilities and confidence to quickly and competently intervene in future reactions. Findings have been incorporated into innovative educational tools for caregivers of children with food allergies.
Applying an Intersectionality Lens to Gender-Based Document Analysis: Implications for Health Equity for Refugees
Nancy Clark, Vancouver Community College
Bilkis Vissandjée, Université de Montréal
Increasingly, populations are becoming more diversified and stratified in the context of global migration and refugee resettlement. However, little is known about how governmental policies and legislative documents are impacted by and/or impact the lived realities of diverse refugee women, men, boys, and girls. The purpose of this discussion is to provide a qualitative overview with an intersectionality lens, of three existing documents related to refugee resettlement in Canada. An intersectionality policy-based framework has proved to be useful in examining how existing documents take up and apply “gender and equity,” as it is required to do so when it comes to addressing the health and well-being of refugees. Drawing on this work, we make the case that language, health literacy, gender, and immigration status intersect to produce differential health outcomes for women, men, and groups validating a greater prominence of the integration of a gender and equity lens in health policy and practice.
Complex Responsive Processes: Make Sense of Health-Care Clinicians’ Experience in the Living Present
Sandra Davidson, Symposium Chair, University of Alberta
Abstract#1: The Process of Sense-Making Through the Lens of Complex Responsive Processes
Sandra Davidson, University of Alberta
The use of complex responsive processes (CRP) as research method is an emerging form of qualitative, social inquiry. CRP research entails a process of chronicling movement of thought and the shifts in organizational practices of the researcher as they iterate through a project to develop a thesis on organizational life. Further, the research account in CRP methodology tracks its own development as further reflexivity. CRP uses complexity principles to move toward an understanding of human interaction as a process of sense making. Therefore, the main tenet of CRP is the focus on the interactions between people that take place in the present as the building block of transformative organizations. Using CRP as a lens through which we view our day-to-day conversations and to make sense of our experiences can be useful in cultivating both personal and organizational transformation. The conceptual framework of CRP supports the idea that the power to shape the preferred future of health care (and society in general) lays within our relationships with others that take place in the here and now.
Abstract#2: Revealing the Research Story: Complex Responsive Processes Rigorous Reflexivity
Cathy Lalley, Arizona State University
This paper focuses more precisely upon the activities undertaken by a researcher engaging in CRP research. Specifically, this paper explores the ramifications of data collection experienced in the living present and how this informs the research process. The significance of rigorous reflexivity is explored from the vantage point of the researcher and their personal development that acknowledges biases and values as relevant variables informing the interpretation of the data. The importance of the personal experience of the data by the researcher is given prominence through the reflexive process as interpretations are made. By presenting explicit interpretation as the research unfolds provides the opportunity for the meaning of the story to reveal itself to the researcher within their idiosyncratic experience in the living present. The process and reflexive triangulation on the path to meaning-making is explored with examples from the author’s research.
Abstract#3: New Rather Than Truth: Discussing Validity in Complex Responsive Processes
Kevin Clouthier, Open Doors for Lanark Children and Youth
This paper explores the inherent tension that exists throughout qualitative research methods in general and complex responsive processes specifically, the question of external validity of findings. Since the findings are interpretive statements of the reflexive experience of the researcher, the question of the generalizability of findings of the change experience will be addressed through the complex responsive processes lens. This paper explores the manner by which what can be known and how it is known converge within CRP thereby offering a bridge that engages the larger social experience with the microlevel research experience. There will be discussion of understanding of the significance of action upon the development of mind, social organizations, and knowledge creation.
Advancing the National Standard of Canada for Psychological Health and Safety in the Workplace (The Standard)
Susan Coldwell, Nova Scotia Government and General Employees Union
The Mental Health Commission of Canada and Canadian Standards Association, in January 2013, launched an ambitious national strategy to address workplace psychological health and safety. This standard, at present voluntary, with the goal to promote psychologically safer workplaces is unique in the world. It requires that the employer acts to ensure that no significant harm or injury occurs to employee mental health in negligent, reckless, or intentional ways and that every reasonable effort is made to protect the mental health of employees (due diligence). The protection of the mental health of employees is placed on the same footing as physical health (duty of care). The process has been aided by commitment to a policy statement, ongoing education, internal audit, and surveys with feedback provided through an external research committee. The Bully-Free Workplaces: Shifting Culture program offered through the Nova Scotia Government and General Employees Union, aligns with the goal of the standard and has actively adopted the standard and promotes this important effort in a variety of workplace settings. The presentation describes the structure and processes involved and what we have learned to date.
Reflexivity as an Ethical Commitment to Research With Homeless People
Shelley Cook, University of British Columbia
Rachelle Hole, University of British Columbia
Reflexivity is an essential methodological construct foundational to cultivating emancipatory research approaches. Nowhere is this more important than in research with marginalized population where inherent power issues create an incubator for ethical dilemmas. In this presentation, we discuss the importance of reflexivity in research involving the homeless. In particular, we will theorize reflexivity as process and discuss ethical tensions as well as practical applications in order to ensure reflexivity and respect for homeless people will remain central to research practice. The presentation will highlight real-world examples from homelessness research and examine how reflexivity helps to foreground ethical concerns related to vulnerability, lack of voice, and social and spatial exclusion.
Mapping as Methodology: Using the Geoweb to Impact the Health and Well-Being of the Homeless
Shelley Cook, University of British Columbia
Jon Corbett, University of British Columbia
Kerry Rempel, Okanagan College
Rachelle Hole, University of British Columbia
“Mapping for Change” is a case study of best practices related to the use of the Geoweb (an online mapping tool) as a mechanism for enhancing informational exchange and collaboration between homelessness stakeholders. The project involves implementing and evaluating the use of a web-based mapping application that functions as an accessible and searchable spatial database of housing and related services for the homeless in Kelowna. The purpose of the presentation is to present and discuss the importance of Geoweb methods as a way to bring about systemic change that improves the health and well-being of homeless individuals. The presentation will highlight how, through the use of Geoweb technology, the act of mapping is research because it engages with homelessness stakeholders. In doing so, it is itself a mechanism for social change. We will also discuss how emerging findings are being used including using mapping technology as a way to create social change through storytelling.
“I Thought That It Would Get Better”: How Young Australian Women Make Decisions About Using, or Not Using Contraception
Jacqueline Coombe, Research Centre for Generational Health and Age, University of Newcastle
Melissa L. Harris, University of Newcastle
Deborah Loxton, Research Centre for Generational Health and Age, University of Newcastle
In Australia, the contraceptive landscape is characterized by high rates of short-term hormonal methods, particularly the oral contraceptive pill, and low rates of long-acting reversible contraception (LARC; e.g., intrauterine devices and implants). In addition, high rates of unintended pregnancy (approximately 50%), particularly among young women, have lead health professionals to advocate for increasing LARC use. This abstract outlines the preliminary findings from a project which aimed to explore how young women make decisions about their contraceptive use, with a particular focus on LARC. A thematic analysis approach was utilized to develop an understanding of contraceptive decision-making from the perspectives of women. Thus far, 15 interviews have been completed, upon which preliminary analysis has been conducted. The preliminary findings have illuminated a number of important insights regarding contraceptive decision-making. Notably, the role of pregnancy ambivalence and contraceptive use has been elucidated; particularly, how women reach a point in their lives where they would be “okay either way” with an unintended pregnancy and how this corresponds with less concern over instances of imperfect contraceptive use. Additionally, how women balance their desired level of contraceptive efficacy with the desired mechanism of action and tolerable side effects within the boundaries of the contraceptive methods available, as well as at what point women reach their “tipping point” has been demonstrated. Although the study findings will develop as the project evolves, the preliminary analysis reveals that contraceptive decision-making is often not a static or linear process, but rather a complex phenomenon requiring in-depth exploration.
Experiences in Becoming a Paramedic: A Model of Paramedic Professional Socialization
Scott Devenish, Queensland University of Technology
Michele Clark, Queensland University of Technology
Marylou Fleming, Queensland University of Technology
The professional socialization process encountered by university educated paramedics is explored in this presentation. Two existing professional socialization models (anticipatory, formal, and postformal phases of socialization and the reality shock theory) were tested against the experiences of people making the transition from university student to practicing paramedic. A model of paramedic professional socialization was then developed from the study’s findings. Qualitative methods appropriate to this research study guided the data collection and analysis process. Ethical approval was obtained from several universities, three Australian Ambulance Services and the United Kingdom National Health Service. The university students and paramedics from Australia (n = 19) and the United Kingdom (n = 15) were interviewed for this study. The results confirmed the presence of anticipatory, formal, and postformal phases in the socialization of university-educated paramedics. However, a new phase, the “postinternship phase,” was found to be present as paramedics who participated in this study were operationally given the title of qualified paramedic only after completing a professional paid employment year with an ambulance service. Further, aspects associated with “reality shock” such as a honeymoon, skill and routine mastery, social integration, moral outrage, and conflict resolution phases were confirmed as relevant to the professional socialization of paramedics. The conclusions drawn from this study indicate the professional socialization process for many of the participants was a challenging and difficult experience. Expectations formed during the anticipatory and formal phases were largely found to not reflect the reality of paramedic practice encountered by the participants during the postformal and postinternship phases.
Reimagining Ethnographies of Risk
Pamela Downe, Symposium Chair
Abstract#1: Reimagining Risk Through Ethnographic Engagements: HIV-Affected Mothers in Saskatoon
Pamela Downe, University of Saskatchewan
In this paper, I challenge the epistemic dichotomies of risk through an ethnographic engagement with 26 Indigenous and HIV-affected women who access the services of AIDS Saskatoon. The CIHR-funded research that informs this paper spans 5 years—2008 to 2013—and examines the interrelationship among maternal health, motherhood, and HIV-related risk and experiences. Although Beatty (2010) argues that ethnography does not adequately address the emotional dimensions of cultural life, including illness, I argue here that it is through anthropologically grounded approaches to ethnography that the affective connections among maternal love, child loss, and HIV risk become apparent. This argument is advanced in three ways. First, the broad category of risk is unpacked to identify the overlapping ways in which health-related risks articulate with cultural, familial, financial, and emotional risks. Second, I examine the ways in which the research participants situate themselves in this field of risk as simultaneously vulnerable to ill-health and discrimination while being identified in broader discourses as agents of HIV-related danger. Third, I explore the ways in which subjective expressions of maternal love and child loss thread throughout the participants’ descriptions of vulnerability, and I consider the cultural as well as clinical importance of framing these expressions ethnographically. This paper concludes with a reflection on the challenges that many health researchers continue to face when attempting to methodologically and theoretically advance what environmental anthropologist Joshua Reno (2011, p. 516) calls the “contested facticity of dangers and the appropriate stance toward them.”
Abstract#2: Ethnographies of Risk in Youth Sexual Health HIV Prevention
Susan Frohlick, University of British Columbia
Allison Odger, York University
Robert Lorway, University of Manitoba
Adey Mohamed, Community Researcher
Canadian youth have been identified as being in need of sexual health intervention. Epidemiological risk discourses regularly target young people between 15 and 39 years of age, particularly those from HIV-endemic countries and women of childbearing age. Imbued with authority and legitimacy, statistically based information pertaining to the risk of HIV infection carries with it an assemblage of social and cultural interpretations entwined with stigma and social memory. These registers of meaning hold implications with respect to how individuals who fit within “the targeted population” situate and understand themselves as being “at risk.” Ethnography, which aims to understand the particularity and social and cultural context of people’s lives, is an important methodology for gaining insight into the complex ways in which HIV as a risk discourse is understood by youth in Canada. This paper focuses on immigrant youth from African communities in Winnipeg to engage in a discussion about ethnographies of risk by showing how epidemiologically based discourses unfold across a complicated trajectory. Ethnography, in particular, reveals the life history as well as the materiality of “risk” as it is made sense of by youth in and through their social relations. Qualitative research can, therefore, help to illuminate how HIV risk plays out in sexual health intervention contexts in ways that go beyond a concern for “cultural barriers.”
Abstract#3: Sexual Risk Ontologies and Community Ethnography in South India
Robert Lorway, University of Manitoba
The HIV intervention in India known as Avahan (2003–2010) deployed an array of enumerative techniques that carved up and ordered space, forming the basis on which program managers and sex workers alike governed community access to specialized clinical services. During a community ethnography project I coordinated with male sex worker collectives in three Avahan districts between 2007 and 2009, the community research team conducted participant observation at various “hotspots” so as to qualitatively capture “risk” from an environmental perspective. The field notes produced were teeming with multiple, partial, and often ambiguous forms of epidemiological and technical knowledge. This led me to wonder if the plethora of quantitative indicators, sexual typologies, tracking forms, and geographic mapping techniques had constituted a republic of enumeration that sex workers came to serve. Over an extended period of ethnographic exploration, however, a more complicated picture emerged. Community researcher field notes illustrated the way intervention technologies, prevention discourses, and biomedical treatments had come to mediate the social connections between people. These notes offered a glimpse into a social world that coevolved with epidemic prevention; new “heterogeneous associations” (Latour) between sex workers, clinicians, prevention discourses, treatments, and pathogens were made possible by the ordered way of seeing sexualities and risk in spatial terms, interweaving erotic and clinic life. For various practical and political ends, sex workers’ daily practices retranslated, reinterpreted, and reassembled scientific ideas of risk into what I call grounded epidemiologies.
Coconstructing Relational Spaces to ‘Grow a Healthy Community: Nurturing Collective Efficacy, Activism, and Sustainability
Joyce M. Duckles, University of Rochester
Robert Moses, North East Area Development, Inc.
Doreen Young, Beechwood Greenhouse Collaborative
As coresearchers from the University and the “Cedarwood” neighborhood, our team has engaged in a long-term ethnography to uncover and inform the transformation of an urban community. Cedarwood experiences multiple health challenges including extreme and concentrated poverty, limited fresh and unprocessed foods, and prevalence of chronic diseases. Adopting a measure of premature mortality as an expression of poor health outcomes, this community was ranked as the eighth highest in our region. These local mortality rates clearly demonstrate that “place matters.” This presentation highlights shifts in local practices and discourses around health. Two questions guide our work: How are spaces constructed that support healthy and sustainable change? What do pathways of activism look like? We gathered data at informal parent gatherings in schools and gardens, through observations and interviews in our local corner store, and through audio recordings of team meetings. Adopting constructivist grounded theory methods, we iteratively collected and analyzed data together. Building on research demonstrating the potential of gardens and other community spaces to facilitate neighborhood development and health promotion, we present three processes coconstructed across our neighborhood spaces: distributing expertise and resources, shifting interactions around health, and creating spaces of action. Our findings demonstrate that when community members become health change agents together, new discourses of health and activist identities emerge. Gardens are growing, zoning board meetings are attended, and sustainable businesses are forming. We propose a relational, collectivist, and activist perspective, one that views health as engaging with others, with communities, and with institutions, especially those sustaining poverty and disparities.
Paddling Upstream Down Under
Diane Duff, University of Southern Queensland
Aletha Ward, University of Southern Queensland
Catherine Hay, University of Southern Queensland
Words for Wellbeing is a community hospital collaborative health program with the goal of improving health literacy and self-management of health and chronic illness for people in the West Moreton health district of Queensland. Based loosely on the British Reading Well Books on Prescription program, in the Words for Wellbeing program, health professionals and librarians recommend books to individuals who are either looking for health self-help or for those who have been recently diagnosed with a condition that requires attention by the individual to manage and improve their health. Books are available on general health; mental health, mood, and anger management; healthy eating; exercise; diabetes; chronic respiratory and cardiac conditions; and cancer. Our primarily qualitative research study was comprised of a study within a study and was designed as a demonstration project to reimagine health services, health relationships, and build research capacity in West Moreton. We elected to use a participatory action research (PAR) approach that incorporated members of the public, nurses, doctors, librarians, and others to design and evaluate a new collaborative health program to build capacity in program evaluation through research. In the second phase of the project, narrative inquiry was used to conduct Words for Wellness participant interviews and analyze the stories that the participants of the project shared with the investigators. The members of the PAR group participated in all aspects of recruitment, data collection, data analysis, and reporting of results. The preliminary results of both phases of the project are shared in this presentation.
Honoring the Voices of Family Caregivers of Persons at the End of Life: A Metasynthesis Study
Wendy Duggleby, University of Alberta
Family caregivers experience multiple concurrent transitions when caring for a person with advanced cancer; however, very little is understood about this experience. Using Sandelowski and Barrosso’s methodology for synthesizing qualitative research, the aims of the metasynthesis were to (1) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (2) describe potential triggers for transitions, (3) identify what influences this experience, and (4) develop a conceptual framework of their transition experience. The following steps were completed: (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Inclusion criteria for the articles were (a) published qualitative studies (and mixed-method designs) of the caregiving experience of caregivers of community living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and over, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. The synthesis of 72 studies suggested that caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their family member. The findings provide a framework to guide the development of supportive programs and future research.
A Cautionary Tale of Method Fetishism
Mohamed El Hussein, Mount Royal University
Andrea Kennedy, Mount Royal University
Brent Oliver, Mount Royal University
Method fetishism also known as methodolatry has dominated and overtaken the discourse in nursing and social work related to research, teaching, and learning. If the worshipping of idols is “idolatry,” the worshipping of methods might be referred to as “methodolatry” (Brooks, 2013, p. 51). This rigid approach has significant impact on ways of being, knowing, and doing. Within academia, we have a responsibility to broaden perspectives, add to the body of knowledge, and create innovative practices. Scholars who lose track of this purpose may get stuck in belaboring mechanistic aspects of their method due to their preoccupations with the purity of the approach. Scholars’ slave-like attachment to a single-method strangulates creativity and smothers knowledge generation and collaboration. Devotion to method creates tension among scholars, forcing one to think “inside the box” which inherently deprives our respect for each other and creates oppression. It is not our intention to undermine the value of the method. However, scholars are cautioned that the method is in service as the means to an end, and not the end unto itself. Ignoring this purpose will sever conceptual links to a shared reality and threatens our moral obligations as scholars. We argue against the rigidity of following limited inquiry as it is contrary to the spirit of creativity underlying research, teaching, and learning. We espouse that method fetishism hinders us in the long run for divergent, innovative thinking that is aligned with our academic and moral purpose as academics.
I Know My Body Best—Squamish, Knowledge, and the Health Pregnancy Outreach Program
Laura Finkler-Kemeny, Quest University Canada
This research article discusses the ways through which women in the pre-/postnatal period acquire, navigate, and respond to knowledge claims. This discussion draws on Haraway’s (1988) concept of situated knowledge and Jordan’s (1977) authoritative knowledge in order to better understand how knowledge claims pertaining to prenatal nutrition norms, alcohol consumption, and infant feeding techniques are produced and reproduced in particular communities. My findings offer insights on how the community of Squamish produces certain health norms and the role of public health programs in facilitating different systems of knowledge. While hegemonic biomedical discourse was dominant in participants’ responses, there were also instances in which they actively resisted and deviated from this authoritative knowledge. This research further contributes to the work of Browner and Press (1996), showing how women are active interpreters of knowledge, and examining the complex processes through which knowledge is produced.
Doctor of Nursing Projects Versus Research: Developing the Clinical Scholar Practitioner
Lydia Forsythe, Londes Strategic Healthcare Consulting
Developing a Doctor of Nursing Practice (DNP) Project is based in defining a gap in practice versus a gap in knowledge within a research context. The first step in this process is defining a gap in practice in a specific setting. Project topics range from specific clinical intervention to policy change, informatics, and more. Next, each student develops a question based on the population of interest, proposed intervention, comparison to the current state, potential outcomes, and timeframe for the intervention (PICOT) to guide the structure of the project. The PICOT defines a gap in practice to start the process of effecting change. We want DNP students to develop an understanding of how to apply the use of research studies to support conceptual ideas to be applied in practice. Students then learn how to apply the use of theoretical models to effect change. Next, students need to understand the variations of Institutional Review Board (IRB) approval and human subject protection. Then, off we go to project implementation, evaluation, analysis, and outcomes! The steps between clinical projects and research are similar; however, there are clear demarcations about clinical practice projects versus research studies; this is extremely important for students to be able to apply and understand as clinical scholar practitioners effecting change in practice.
Ka-wachi-wa-pinaywin (“Coldness in the Bones”): The Personal Perspectives of First Nations Persons Living With Rheumatoid Arthritis
Moni Fricke, University of Manitoba
Standardized outcome measures used in the assessment of chronic disease need to be relevant to the person if interventions based on the results are to be meaningful. The Modified Health Assessment Questionnaire (MHAQ; Pincus et al., 1983) is an 8-item questionnaire used commonly with individuals with rheumatoid arthritis (RA) to assess self-reported function. This scale has been translated and validated in multiple languages and cultures but has never been evaluated for its relevance with a Canadian Indigenous population despite its frequent application in clinical and health research settings. A mixed methods sequential explanatory approach was used to determine whether or not the MHAQ is an appropriate measurement tool to adequately document the lived experiences of activity and participation in First Nations individuals diagnosed with RA. The findings of the qualitative phase using interpretive description methodology will be highlighted during this presentation, where semistructured interviews with 25 First Nations individuals living with RA provided a deeper understanding of the lived experience of disability. Thematic analysis resulted in three key themes: Ka-wachi-wa-pinaywin (“coldness in the bones”), adaptive resilience, and family relations. The qualitative outcomes as well as a convergence coding matrix used to triangulate the findings of the mixed methods did not support convergent validity of the MHAQ in a First Nations population. The findings reinforced the importance of assessing disability from an integrated approach that takes into consideration an individual’s personal and environmental context as well as the alignment between capacity and performance.
EMS and LTC Staff Perspectives on Decisions to Transfer Residents to the Emergency Department: A Qualitative Secondary Analysis
Saige Godberson-Parlin, University of Alberta
Every year, long-term care (LTC) residents are transferred via 911 ambulance calls to the emergency department. Often, these transfers are necessary as the resident’s needs exceed the capacities of staff or resources in long-term care facilities. However, sometimes these transfers via 911 are avoidable. The process leading to the decision to transfer a resident is often complex, as it involves a number of differing perspectives from multiple stakeholders. In this secondary analysis of two qualitative data sets from studies investigating avoidable transfers, we explored how perceptions of the interaction between LTC and emergency medical services (EMS) staff influence the decision-making process around determining whether a resident transfer is warranted and appropriate. Secondary analysis was based on pre-existing data from the Examining Aged Care Transitions (EXACT) and Older Person’s Transitions in Care Study (OPTIC) studies in which family, LTC nurses, health-care aides, managers, and EMS staff were interviewed. Content analysis by two coders within and between data sets illuminated how differing interpretations of advanced directives “or goals of care” are used in transfer decisions. Differing perceptions of illness acuity and expectations around clinical assessment and reporting also contribute to tensions and conflict in decisions to transfer. Overall, there are indications that poor communication between LTC and EMS staff at the point of handover contributes to difficulties in determining appropriate and necessary transfers which ultimately places the resident at risk.
“It Really Was a Roller Coaster”: The Impact of Domestic Violence on the Adult Friends and Relatives of Survivors
Alison Gregory, University of Bristol
Domestic violence (DV) is hazardous to health due to injuries sustained and to chronic physical and mental health problems which ensue. Women experiencing abuse often seek help from relatives, friends, or colleagues; many rely predominantly or exclusively on informal support. This support is significant in survivors’ lives, having associations with positive outcomes for mental health, quality of life, and formal help seeking. Crucially, informal support also buffers against women experiencing future abuse. Minimal research has been conducted with people who provide this vital support. Twenty-three semistructured interviews were carried out with parents, siblings, colleagues, friends, and nonabusive partners of survivors. Recruitment involved a range of strategies including social media, advertising resulting from a radio interview, and flyers in community settings. Interviews were carried out face-to-face, over the telephone or using Skype, and the resulting transcripts were coded using NVivo software. A thematic analysis was conducted. The impacts on informal supporters were numerous, varied and potentially severe, including negative impacts on psychological well-being, physical health, relationships, and safety. These people were at direct risk of harm from the perpetrator. There is little recognition of people providing informal support to DV survivors, and yet both the value and impact are clear. These findings have informed a public health campaign across Bristol, and further research is being conducted to understand avenues of support which could be developed to help informal supporters help seek and self-care, so that they in turn might be better equipped to support survivors.
A Researcher’s Reflections on Using Social Media and Skype in Qualitative Research on Sensitive and Emotive Topics
Alison Gregory, University of Bristol
My PhD research explored the impact that domestic violence has on adults who provide informal support (friends, family members, colleagues, and neighbours) to survivors. The interview participants I was aiming to recruit were a hard-to-reach population; there was no obvious group I could approach in order to make contact with informal supporters of survivors, because no service exists in the U.K. with the specific remit of supporting this group of people. In addition, I wanted as much breadth in my sample as possible, so I adopted a varied recruitment strategy, including the use of social media and web advertisement. The study was advertised between August 2012 and April 2013 and attracted more than 100 inquiries, with 23 participants ultimately recruited and interviewed. Several participants lived some distance away, and where this was the case, I offered them the option of an interview via Skype. Using Skype appeared to enable a sense of connectedness, akin to face-to-face interviews, which encouraged a depth of disclosure; however, the downside of this creation of intimacy without proximity meant that, as a researcher, I felt impotent at times, because I was unable to respond in ways I would have liked when participants expressed emotion or distress. On reflection, I think that the potential for vicarious trauma needs to be weighed up when considering modes of interview for sensitive and emotive topics. In this presentation, I will further discuss the pros and cons of using digital technologies for recruitment and of using Skype for interviewing.
Pretty Radical From What I’ve Known: The Dissonance and Distance Underlying Patients’ Cognitive Engagement With Educational Health Information
Gayle Halas, University of Manitoba
Temple Bev, College of Nursing, Rady Faculty of Health Sciences, University of Manitoba
Patient education aims to activate behaviors for health management, usually assuming patients desire information and learning. The complex and emotional context surrounding illness and disease may reduce the patient’s openness or willingness to engage with information. Perceptions of a resistant or difficult patient are accompanied with little understanding of the underlying factors. This research explored the cognitive and emotional factors underlying the patient’s readiness to learn or cognitively engage with information regarding diabetes management. This study was conducted using interpretative phenomenological analysis, which draws from the educational experiences of 19 adults with type 2 diabetes and interprets their narratives within the context of existing research and theory. Three main themes emerged: underlying incongruence in knowledge, thoughts, and beliefs; relational talking; and negotiating control. Themes converged on the essence of “distance” between the patient’s lifeworld and the disease and its management. When considered in relation to cognitive dissonance and psychological distance theories, psychological adjustment and relational challenges were revealed. Adjustment involved reconciling difference and dissonance at various points during diabetes management. Distance also threatened the adjustment process and in some cases generated defensive reactions. Adjustment and relational challenges have a bearing on the early stages of the learning process. Differentiating concrete and abstract information may be more conducive to a staged learning process and offers a more tangible understanding of “finding common ground” within patient-centered communication. These factors have been reported by patients with diabetes and require further consideration for tailoring communication and education to support person-centered care and self-management.
Forever Changed But Never Alone: A Hermeneutic Phenomenological Study of the Lived Experience of Sexual Assault Recovery
Ann Hellman, Tennessee Technological University
Sexual assault (SA) is an international problem affecting hundreds of thousands yearly. Significant psychological, physical, and financial consequences result. A study explored the meaning of the lived experience of SA recovery. No other hermeneutical phenomenological study on this subject was present in literature prior to this study. Heideggerian hermeneutical phenomenology searches to understand how an individual makes sense of lived experience. The aim of the study was to examine the lived experience of adult female SA survivors while examining the influence of spirituality and religious practices upon the recovery process. After IRB approval, nine female participants, aged 18 and older participated. The researcher performed face-to-face, in-depth interviews that were audiotaped and transcribed. Researchers compared lists of identified themes with peer debriefers; a field journal and audit trails were used, lending credibility. Findings resulted in five constitutive patterns. This study provided insight into living as an SA survivor and impetus for future studies impacting nursing practice. Participant consensus is recovery is a lifelong process. Some SA participants coped through substance abuse, trying to avoid revictimization, labeling the event, and suicidal ideation. Some participants found positive effects of increased personal strength and resiliency and benefit of helping others with similar experiences. In conclusion, while this study provided substantial information, it provided implications for social change. All must appreciate that surviving SA is a lifelong journey. Symptoms and effects may manifest at any time, requiring appropriate intervention, treatment, compassion, and understanding. For faith communities, it is time for healing, love, and avoidance of blame.
Strength in Unity: A project Aimed at Addressing Mental Health Stigma for Asian Men in Canada
Peter Hoong, Simon Fraser University
Cindy Jiang, Simon Fraser University
Nimesh Patel, Simon Fraser University
Marina Morrow, Simon Fraser University
Background: Mental illness, a significant health problem in Canada, is likely to affect all Canadians at some point in their lives directly or indirectly through a family member, friend, or colleague. Early detection and treatment is often hampered by the affects of stigma, making men especially reticent to seek help. The stigma associated with mental illness also presents a serious barrier to people being accepted in their communities. Although stigma cuts through all communities and groups, it intersects with a range of factors and thus impacts some groups differently than others. Asian men and youth have been identified in the literature as particularly unlikely to access services due to stigma. Objective: The purpose of our study is to reduce internalized stigma in Asian men in Canada (Vancouver, Toronto, Calgary) and encourage them to advocate to address mental illness stigma in their respective communities through comprehensive intervention strategies. Methods: This is a mixed-method research study to evaluate the effectiveness of our workshops to reduce the stigma of mental illness. We randomized participants into four intervention groups and offered them either acceptance commitment training (ACT), contact-based empowerment education (CEE), combined (ACT and CEE), or control group workshops. Quantitative survey data were collected at four points: baseline, postintervention, 3-month and 6-month postintervention. Qualitative data were primarily collected via focus groups at baseline and 6-month postintervention. Results: At the Vancouver site, we connected with 1,364 men to join our study from January 2015 to March 2016, and we randomized 721 participants. Out of the 721 participants, 651 and 70 participants were offered the workshops in English and Chinese languages, respectively. Out of the 721 randomized participants, 432 (59.9%) men attended the workshops while 363 participants (50.3%) completed the workshops. We offered the last round of the workshops in May 2016. We will present the Vancouver site preliminary results emerging from focus group and field note data and discuss the use of an intersectional lens for analyzing the results.
Suffragettes for Caesarean: “Every Woman Should Have a Choice”
Julia Imanoff, University of Calgary
Cynthia Mannion, University of Calgary
Graham McCaffrey, University of Calgary
The phenomenon of patient choice for caesarean delivery (PCCD) is complex and, at times, can be perplexing for health-care providers (HCPs). PCCD is not merely an individual choice but is informed within the historical context of choice and the development of how this choice and the provision of chosen caesareans have evolved. In this study, I addressed the question of how HCPs might understand women’s choice for CD. Four women who underwent a chosen CD were recruited. Semistructured interviews were used to generate data, and an interpretive analysis grounded in Gadamerian hermeneutics was used to develop contextualized understandings from transcripts. The understandings developed from the analysis include siding with caesareans, the right choice, horror stories, and the promise of safety. It was important for the women in this study to feel supported by an obstetrician and to have their choice validated by themselves or others. The idea of a CD being safer was emphasized by the women, especially as they described the negative outcomes of vaginal deliveries as horror stories. PCCD can provide women with a sense of safety during delivery and result in positive experiences, but at a cost. As previous studies suggest, there may be long-term economical and medical consequences to the increasing choice of CDs. As there is no consensus among HCPs and women continue to make this choice, it remains the role of HCPs to recognize the meaning of the choice for each woman and how it is situated in a broader historical context.
Developing the CollaboraKTion Framework for Community-Based Knowledge Translation: A Multimethod Qualitative Inquiry
Emily Jenkins, University of British Columbia
Knowledge translation (KT) has received much attention in the health context as a strategy for enhancing the use of evidence among clinicians to improve health outcomes in acute and primary care settings—a process that has drawn heavily on systematic reviews of randomized controlled trials. In recent years, the narrow scope of this “traditional” orientation and related approaches to KT has been critiqued and accompanied by recognition of the need for KT approaches to support the use of diverse forms of knowledge in community settings to inform population health interventions. This study utilized a multimethod qualitative approach to respond to this knowledge gap and inform the development of the CollaboraKTion framework for community-based KT. Ethnographic methods including individual interviews with youth and adult stakeholders (n = 37) and field observations collected over a 1-year period were used to capture the processes involved in conducting community-based KT in a rural British Columbia community with the aim of promoting youth mental health. In addition, qualitative synthesis of systematic review data on the outcomes of participatory, community-based health interventions was conducted. These data sources were analyzed concurrently using thematic analysis techniques and the findings used to inform a five-phase framework for community-based KT. This methodological approach contributed to the development of an empirically driven and theoretically informed framework that is grounded in real-world application, yet inclusive of the broader community-health intervention evidence base and provides needed guidance for researchers and practitioners seeking to utilize KT approaches to improve population health outcomes in nonclinical settings.
Strength in Unity: The Challenges of Recruiting Males Into a Mental Health Research Study to Reduce the Stigma of Mental Illness in Asian Communities
Cindy Jiang, Simon Fraser University
Peter Hoong, Simon Fraser University
Nimesh Patel, Simon Fraser University
Marina Morrow, Simon Fraser University
Stigma cuts across all communities and works to set apart people with mental illness. The purpose of this intersectional, mixed-methods study was to engage with men from Asian communities in Calgary, Toronto, and Vancouver to reduce the stigma related to mental illness using two different workshops, which were evaluated for effectiveness. This presentation will discuss the recruitment techniques and challenges used to engage men from South, East, and Southeast Asian backgrounds in Vancouver, Canada. From January 2015 to March 2016, the Vancouver site connected with 1,364 men, randomized 721 men into the intervention, and had a total of 432 men attend workshops. The participants recruited were aged 17 and older, self-identified as male, living with and/or affected by mental illness (including family members, caregivers, and friends) or as a general community member wanting to learn more about mental health and well-being to take part in this study. Recruitment techniques included guerrilla marketing, distribution of flyers, social and other electronic media, outreach to community organizations, traditional marketing (radio, TV, advertisements), and word of mouth. Participants were compensated $55 for each workshop attended to cover their time and travel (up to a 10 sessions, including focus groups).
From Narrative to Parliamentary Briefs to Federal Court Affidavits: Lessons Learned Through Knowledge Mobilization for Refugee Safety, Rights, and Health
Sharalyn Jordan, Simon Fraser University and Rainbow Refugee
I found myself challenged to step into research-informed political advocacy when the federal government undertook a massive overhaul of the refugee protection system in 2010–2013. A counseling psychology practitioner by training, I had been working with refugees seeking protection from sexual orientation, gender identity, or HIV-based persecution since 2004. In 2007, I began a collaborative research project with Rainbow Refugee on LGBTQ refugee settlement using both narrative and critical ethnographic methods. When the federal government announced its plans, Rainbow Refugee and I feared that the proposed legislation would undermine the safety, rights, and health of all refugees and create particular harms for LGBTQ refugees. Working with community partners, I translated research knowledge into advocacy tools: briefs and testimony to Parliamentary Standing Committees, federal court affidavits, and submissions to Refugee Board consultations. The collective efforts of refugee advocates and scholars from across the country did not move the federal government towards fairness or compassion—the legislation became law. At federal court, the evidence provided by community-based advocates and scholars had more of an impact. Federal court decisions resulted in the reinstatement of health-care coverage and the right to appeal for refugees regardless of country of origin. Submissions to the Refugee Board consultations yielded results that potentially mitigated some of the harms. For example, LGBTQ refugees were included in the revised guidelines for vulnerable persons used by the Refugee Board. Reflecting on lessons learned through my engagement in translating research into advocacy tools, I will share insights into pragmatic techniques and problematic tensions of advocating with qualitative research.
Experiential Knowledge of Physician Risk and Protective Factors in Alberta, Canada
Nicole Kain, University of Alberta
Nigel Ashworth, University of Alberta
Medical regulatory authorities (MRAs) are tasked with the regulation and support of competent physician practice. The MRA in Alberta is the College of Physicians and Surgeons of Alberta. Although research defines and describes physician competency, there is little research that studies what MRAs have learned about what causes risk and what protects quality medical practice. When considering risk and protective factors for physicians, it is important to access and translate the experiential knowledge of veteran, knowledgeable physician assessors employed by MRAs to assess physician practice. This experiential knowledge is essential to improve the understanding of factors that influence the quality of medical practice and to identify potential strategies to support and protect physician practice in Canada. The goal of this research is to identify, understand, and explain the risk and protective factors for physicians in Alberta as identified by experienced physician assessors. Thirteen individual semistructured interviews were held in person or via telephone from April to July 2016 with experienced physician assessors in Alberta. Interviews lasted approximately 60 min and were audio-recorded upon consent and transcribed verbatim. Transcripts were imported into NVivo 11 software to assist in data organization and analysis. Initial results and analyses reveal that the risk and protective factors for physician competence are diverse. This is the first qualitative study exploring the experiential knowledge of physician assessors in Canada. Further research is warranted to explore these factors and to investigate their applicability to physicians in other jurisdictions.
What May It Be Like for a Family Physician to Experience a Public Health Crisis?
Nicole Kain, University of Alberta
By and large in Canada, the occupation of family medicine physician has minimal risk. But what about when a public health crisis occurs, and suddenly the occupation of family physician might be unsafe, isolating, and frightening? What happens to a family physician and their practice—when such a crisis or emergency occurs? What may such an experience tell us about the experience of safety for a family physician? How might a physician feel both alone and unsupported, yet surrounded by many others in a clinic or hospital environment? How may a “public health crisis” actually be lived through by a family physician? This research explores how 16 family physicians in Canada experienced a public health crisis, and the related risk communication processes surrounding such events. Individual semistructured phenomenological interviews were conducted between June 2014 and March 2015. Crises detailed by participants included the SARS outbreak in 2003, the H1N1 pandemic influenza outbreak in 2009–2010, Hurricane Juan in Nova Scotia in 2003, severe flooding in Alberta in 1995 and 2013, and forest fires in the Northwest Territories in 2014. Findings suggest that experiencing a public health crisis as a family physician might be an experience of unpreparedness, responsibility, vulnerability, confusion and chaos, isolation, and crisis. Further research is warranted into the phenomenological exploration of family physicians’ experiences during a public health crisis (including more recent events such as the Fort McMurray fires and the Zika virus outbreak), as the crisis itself can never be truly “made ready for;” the breadth of public health crises that may impact and deeply affect this group is immense.
Not Merely a Means, But an End in Itself: The Social Transformative and Empowering Potential of the ASHA—Community Health Worker Program in India
Sumit Kane, KIT Health, Royal Tropical Institute
Anjali Radkar, Gokhale Institute of Politics and Economics
Mukta Gadgil, State Health Systems Resource Centre
Background: The accredited rural health activist (ASHA) is a million strong cadre of community health workers, all women, hailing from, living, and working at the community level. This puts ASHAs in a unique position to observe, understand, and influence not only health but broader societal structures and relations. Some argue that there is potential for ASHAs to not only help achieve universal health coverage but to also play a broader social transformative and community empowering role. Methods: A qualitative study was done to gain in-depth insight into: Whether and how the experience of working as volunteers shapes the societal relations and empowerment experience of the women who serve as ASHAs, and whether and how those who serve as ASHAs are able to contribute to broader social transformation and empowerment of communities they serve. The study also sought to understand the structural (societal, organizational, and relational) antecedents that shape ASHAs ability to play a social transformative and community empowering role. In-depth interviews (38 in total) were conducted with ASHAs, their family members, supervisors, village-level actors, and health workers; focus group discussions were also conducted with ASHAs (three groups of the six). Taking a critical realist analytical approach, structure and agency were analyzed separately (through “analytical dualism”), but also with a focus on their logical relations and the conditions and possibilities that these allow, and the consequences thereof for ASHAs’ experiences.
Results and conclusions: Findings show that ASHAs hail from all strata of society. ASHAs irrespective of their initial social standing report that their social status has improved as a result of being an ASHA. All ASHAs value the opportunities and resources, both social and knowledge related, that being part of the program, brings to them. ASHAs particularly find the opportunity to exercise their agency, and to make a meaningful contribution to their communities, empowering. They find the appreciation and acknowledgement that their communities express, very empowering. ASHAs however find many aspects of their interaction with the health services, disempowering, and constraining their ability to contribute to broader social change. The study found that if the health services systematically support ASHAs to earn social and political capital, ASHAs can lead by example, and both, contribute to universal health coverage and play a social transformative and empowering role. We conclude by identifying approaches to better help community health workers to be able to play a broader social transformative and community empowering role.
It’s Stressful Until You Get Settled In: Settlement Stress for Caribbean, South Asian, and Ukrainian Migrants to Canada
Bindy Kang, University of British Columbia
Joy Wolcatt-Francis, University of British Columbia
Amrita Grewal, University of British Columbia
Scott Lear, University of British Columbia
Cynthia K. Patton, University of British Columbia
This presentation will share findings from a preliminary study that explored the settlement process experienced by three different newcomer communities: Caribbean (n = 5), South Asian (n = 9), and Ukrainian (n = 9) residing in urban areas in Western Canada. Each community was purposefully selected to describe settlement differences between well-established (i.e., South Asian) and emerging communities (i.e., Caribbean and Ukrainian) as well as differences between “visible minority” communities (i.e., Caribbean and South Asian) and a European ancestry (i.e., Ukrainian) community. Participants attended two focus groups with fellow community members, and a final focus group whereby Caribbean, South Asian, and Ukrainian participants collaborated to provide suggestions for research themes and approaches. Participants described stressful settlement processes and highlighted the influence of identity characteristics (e.g., gender, ethnicity/race, accent, and age), migration entry/access (i.e., family sponsorship, point system, migration country options), who they migrated with, access to community networks and supports, socioeconomic status, and employment opportunities. Barriers to settlement included access to social and recreational opportunities, cultural foods, and employment. Additionally, “visible minority” communities reported discriminatory experiences that were absent in the Ukrainian community’s settlement experiences.
Understanding Older Adults Evolving Experience With Oral Health Care
Kimi Khabra, University of Alberta
Sharon Compton, University of Alberta
Louanne Keenan, University of Alberta
Regular utilization of dental care is key to maintaining good oral health in later life. The purpose of this study was to explore oral health experiences from the perspective of older adults living in community dwellings to identify facilitators and barriers to oral health care and to determine how oral health services utilization compares to utilization of other health-care services. An interpretive descriptive methodology was employed with a purposive sample of 12 adults, aged 70 years or older. The inclusion criterion was English-speaking seniors residing in community dwellings. Community dwellings were defined as any housing outside of long-term care or other supportive living facilities. Semistructured interviews were 30–80 min, audio-recorded, and transcribed verbatim. Three researchers participated in a constant comparative analysis to develop codes, generate categories, interpret patterns, and construct themes. Three central themes emerged from the data: (1) life-course influences on oral health, (2) transparency in delivery of oral health services, and (3) interrelationships between oral health and overall health. Four distinct phases of life were identified as facilitating or inhibiting use of oral health services: (1) initial dental experiences, (2) caregiving responsibilities during adulthood, (3) knowledge attainment during middle age, and (4) dependency on others in older adulthood. Older adults voiced the importance of clear explanations surrounding dental costs and establishing a positive communal relationship with their oral health practitioner to create a transparent delivery of oral care services. Participants believed oral health was key to survival and reciprocity between the mouth and body existed, influencing their utilization of both oral and other health services.
Walking Interviews: Reforming Qualitative Health Research Data Collection
Penelope Kinney, University of Otago
Walking interviews (where the researcher walks alongside the participant), as a method of collecting data, is increasingly being used by health researchers in qualitative research. There are a number of different formats the walking interview can take. These include having the route determined by the interviewee, the route negotiated between the interviewee and interviewer, and the route being determined by the interviewer. The walking interview provides insight into the connections between the interviewee and their community. While walking alongside a participant, the interviewer can gain insight into a sense of alienation or connection the interviewee has with their community. For specific groups, such as those who live with enduring mental illness, the walking interview may help overcome any difficulties they have with spontaneous verbal communication. Although mobile interviewing is still at the infant stage as a methodology, it does shed light on how individuals frame and understand the spaces and places they use in their lives. The use of the walking interview can be especially helpful when attempting to gain insight into the connections people have to their community. This presentation will explore how the walking interview has relevance to qualitative health research and practice.
Using Nontraditional Qualitative Data Collection Methods with Vulnerable Forensic Psychiatric Patients: Challenges and Insights
Penelope Kinney, University of Otago
Living with major mental illness often affects a person’s ability to hold spontaneous conversation. Patients with major mental illness may sit passively during traditional qualitative talking interviews, waiting for guidance on how to answer questions. To overcome these impediments, alternative methods of data collection outside of the traditional qualitative interview were used to facilitate dialogue while keeping the patient safe. Gaining access to patients within forensic psychiatric services is a challenging obstacle to be overcome; ensuring both the service and ethics committees are confident that all safety concerns have been addressed is a priority. The use of nontraditional qualitative data collection methods, such as walking interviews and photo voice into research projects, increases the challenges faced. Ethics committees are extremely proficient gatekeepers; so, too, are staff working in forensic psychiatric services. Ensuring the protection of their patients and safeguarding their recovery is paramount, therefore attending to all concerns that have been identified needs to occur if patient participants are to be included. Photo voice, giving the patients the camera, was considered a risk. A compromise was a walking interview, where the patient gave a spatial tour of their “ground” highlighting boundaries and freedoms while the researcher took photographs of these spaces for subsequent one-on-one conversations. This presentation will explore selected challenges faced by including these data collection methods and present a number of insights into how both forensic psychiatric services and ethics committees concerns were addressed, enabling future researchers to conduct similar studies.
Embracing a Vision for Indigenous Health: Community Access to Prevention, Self-Management, and Integrated Diabetes/Obesity Services in the BC Interior
Donna Kurtz, University of British Columbia
Leslie Bryant, MacLean Interior Health
Mary Jung, University of British Columbia Okanagan
Charlotte Jones, University of British Columbia Okanagan
Jessie Nyberg, University of British Columbia Okanagan
Sana Shahram, University of British Columbia Okanagan
Danielle Wilson, Interior Health
Diana Moar, Interior Health
Edna Terbasket, Ki-Low-Na Friends
Chronic health gaps between Indigenous and non-Indigenous people persist globally. In particular, prevalence rates of diabetes and obesity are a major health concerns for Aboriginal people in Canada. Historically, health interventions and programs have been minimally effective. Ongoing program implementation and evaluation, and partnership building among Indigenous people, health service agencies, organizations, and communities are trying to understand and support ways to lessen these gaps for Indigenous people to reach optimal health. The impact of including Indigenous traditional healing practices to population health is becoming increasingly recognized, yet these practices are often not accessible nor funded. In this Canadian Institutes of Health Research funded project, Indigenous-led, community-driven participatory study Indigenous methodologies were used as a culturally safe approach to work with three local First Nations Friendship Centres British Columbia interior in which 84% of the total number of Aboriginal people in the area live. To ensure research processes were culturally relevant and respectful of protocols, traditions and knowledge, and beneficial to communities, advisory teams made up of community members, leaders, health providers, elders, traditional healers, youth, and researchers led the study. Following community research agreements/university/health authority ethics approvals, talking circles, surveys, community forums, environmental scans, a literature review, and scoping review were used to identify how to integrate Western and traditional diabetes and obesity service to improve health across the generations. We share community experiences and local recommendations for culturally safe practices towards health and wellness and ongoing relationships for further research and interventions.
What We Do Not Talk About When We Talk About HIV: Teaching HIV in Dietetics and Nutrition Schools in Indonesia
Mutiara T. P. L. Kusuma, Kansas State University and Universitas Gadjah Mada
Kakali Bhattacharya, Universitas Gadjah Mada
HIV causes adverse impacts on individual health and nutrition status, thus, the roles of dietitians are critical. However, little is known about their actual performance and previous studies indicated that they are likely not immune to stigma towards HIV individuals. Education contribution to stigma reduction is evident although its effectiveness is dependent upon many factors including the educators. Grounded in theoretical framework of symbolic interactionism, this study aimed at exploring the experiences of lecturers in dietetic school in Indonesia on teaching topics related to HIV. It also aims to explain how their teaching conduct is influenced by the perception on their past interaction with HIV. There were four participants recruited from four different dietetics schools in Indonesia, considering the maximum variance sampling. I collected the data over a period of 2 months using multiple methods such as distance conversational interview (through phone calls and Skype calls), document analysis, and reflective research journal. All data were coded manually using several techniques. The codes were grouped into nine categories and three major themes emerged from the data analysis: HIV is a medical area, HIV as an intermezzo, and promotion of selective acceptance to people living with HIV/AIDS (PLHIV). I presented these findings as thematic description to inform the three emerging themes. The results showed that HIV discourse in nutrition and dietetics schools in Indonesia is very limited. Considering the increasing report on stigma and negative attitudes of health workers towards PLHIV, lecturers need to be health advocates to promote better attitudes and reduce stigma among their students.
Am I Allowed to Choose My Patients? “Understanding Dietitians” Attitude Towards HIV-Positive Patients in Indonesia
Mutiara T. P. L. Kusuma, Kansas State University and Universitas Gadjah Mada
Anastasia S Titisari, Universitas Gadjah Mada
Yanri W. Subronto, Universitas Gadjah Mada
Nutrition care is an integral and important aspect in HIV treatment. Adequate nutrition is critical for the patients to maintain their immunity, delay the disease progression, and improve quality of life. Previous studies reported widespread stigmatized attitude towards the patients by doctors and nurses, to which dietitians are likely to share similar prejudice. Grounded in theoretical framework of symbolic interactionism, the aim of this study was to explain the way dietitians working in HIV referral hospitals in Indonesia make meaning of their understanding about HIV in relation to their service conduct to the patients. This study also aimed at exploring dietitians’ perception, attitude, and potential prejudice towards HIV-positive patients. There were 10 participants involved in the study considering the maximum variance sampling. Participants were dietitians working in five HIV referral hospitals in Indonesia. I collected the data over a period of 6 months using multiple methods such as semistructured in depth interview, document analysis, and reflective research journal. All data were coded manually using several techniques. The codes were grouped into 10 categories and three major themes emerged from the data analysis: fear, patients’ blaming, and patients’ selection. I presented these findings as thematic description to inform the three emerging themes. The results showed that prejudice and negative attitudes towards HIV patients existed among dietitians despite their training and exposure to the issues. Therefore, social campaign needs to be tailored to the formal dietitians’ training to improve their understanding, awareness, and acceptance of the HIV-positive individuals.
Exploring How Non-Mexico City Residents Access Abortion Services in Public and Private Clinics in Mexico City
Diana Lara, UCSF Bixby Center for Global Reproductive Health
Eugenia Lopez, Balance Promocion para el Desarrollo y Juventud
Oriana Lopez, Balance Promocion para el Desarrollo y Juventud
Daniel Grossman, Ibis Reproductive Health
Kelly Blanchard, Ibis Reproductive Health
Many Mexican women who live outside of Mexico City travel to the capital “where abortion is legal on request up to 12 weeks of gestation since 2007” to obtain abortion services. Some of them obtain these services with the economical and emotional support from the Maria Abortion Fund (MAF). We conducted a qualitative study to document the barriers faced by women who live outside of Mexico City accessing information in their states of origin about abortion services in Mexico City and to describe their experiences in abortion services in Mexico City. We conducted in-depth interviews with 23 women beneficiaries of MAF. Median age of participants was 23; 13 of them had the abortion in a private and 10 in a public clinic; 20 had a manual vacuum aspiration, and three had a medical abortion. Six women attempted self-induction with misoprostol and/or hormonal injections in their states and after the failed attempt they contacted MAF. Eight women visited local physicians to request an abortion, but the majority of them refused to conduct the procedure, sometimes providing information about services in Mexico City. In three cases, local physicians offered to conduct the abortion at a fee that women could not afford. The majority of women were not aware that abortion was legal in Mexico City, and the majority found out about MAF by Internet or friends. Acceptability of MAF emotional support was high as well as experience in private and public abortion services.
Overcoming the Tide of Language Barriers: Using Focus Group Activities With Universal Elements to Aid in Qualitative Data Collection and Analysis
Brandy L. Maddox, U.S. Centers for Disease Control and Prevention
Shaunté S. Wright, U.S. Centers for Disease Control and Prevention
Hazel Namadingo, Malawi Epidemiology Intervention Research Unit
Qualitative research conducted in international settings may be limited by the researcher’s fluency in the population’s native language. In these cases, the facilitation of focus group discussions is often subject to hiring out or training research assistants in the field to gather data, limiting participation by lead researchers during data collection. From June to July 2015, we conducted a formative assessment in Malawi to identify potential barriers to national scale-up of a novel, dual HIV/syphilis rapid diagnostic test, and incorporated a participant activity approach to counter facilitation challenges faced by nonnative speaking researchers. We conducted four focus groups with pregnant women attending two antenatal clinics (n = 29) in Machinga District. Focus group discussions were conducted in Chichewa, facilitated by a native-speaking research assistant, and transcripts translated from Chichewa to English. To assist non-Chichewa-speaking research team members observing the focus group discussions, we incorporated participant activities with universal elements to facilitate tracking the timing of the discussion, flagging perceived areas of interest or conflict for debriefing discussions, and supplementing synthesis of thematic data. The issues and insights identified when incorporating participant activities into focus group discussions were represented by three main categories: (1) development of an activity implementation plan, (2) activity implementation successes and challenges, and (3) synthesis of participant activity data into thematic analysis. Through our experience of applying this technique, we demonstrated that activities can be used successfully to overcome language barriers in international settings and improve the nonnative speaking researcher’s engagement in focus group discussions and data analysis.
Collaborative Work by Nurses for Responding to the Intercom in an Emergency Ward
Hiroki Maeda, Tokai University
Yumi Nishimura, Tokyo Metropolitan University
The purpose of this study was to describe the work at a nursing station in an emergency ward, specifically focusing on how the nurses collaborate when responding to the intercom, which is used by visitors from outside the ward. The research location is an emergency and critical care ward attached to an emergency outpatient service. Fieldwork and video recordings were conducted on the ward. This study was conducted by analyzing video data from an ethnomethodological perspective. The research plan was reviewed and approved by the Ethics Committee. The ward is the place to which patients are moved from an emergency outpatient service or other wards and from which patients are moved to other wards, other institutions, or their homes. The nursing station in the ward is the center for bed management and the transportation of patients. Nurses from the outpatient service and other wards make contact with the ward by using an intercom. Through the intercom conversation, nurses in the ward have to establish who is visiting, determine why he or she is visiting, and decide who should respond to him or her. The division of work is determined through the interaction of the nurses. The nursing station is the “center of coordination” (Suchman, 1997), in which the call taker coordinates other nurses’ activities, enabling them to control the comings and goings of people. This study clarifies one of the methods for coordinating activities in the ward.
Living With HIV in a Suburban Community: A Phenomenological Investigation of Access to Health and Social Care Services
Derek Manis, University of Ontario Institute of Technology
Brenda Gamble, University of Ontario Institute of Technology
HIV is now a chronic health condition because people are living longer than ever before, largely attributed to the ongoing advances in antiretroviral therapy. People living with HIV (PLWH) are increasingly spread across geographies and are not confined to urban centers or cores. The majority of health sciences and services literature examines HIV within urban or rural contexts; the suburban gradient is not sufficiently described, despite how an overwhelming proportion of Canadians live in this form of community. This research investigated how PLWH in a suburban, Ontario, Canada, community access health and social care services. PLWH were recruited through the regional AIDS service organization and through snowball sampling. Using hermeneutic phenomenology associated with Martin Heidegger, in-depth interviews with PLWH were performed to understand their experience of accessing care. An overwhelming proportion of the PLWH interviewed identified how living in a suburban community is isolating and erects barriers to accessing care and creating a cohesive community. Many PLWH expressed experiences of being stigmatized by a variety of health-care practitioners (e.g., physicians, nurses, pharmacists, dentists, paramedics, etc.) in the course of seeking care. It was also established that many older PLWH have numerous, complex health conditions that require collaborative care from a variety of health-care practitioners. The findings from this research have implications for developing community-based, interprofessional, and collaborative health and social care networks; the delivery of health and social care services; health-care professional training and sensitivity to the diverse needs of PLWH; and aging with HIV.
Mix It Up: Phenomenology and Social Media to Explore Stigmatized Behavior
Cynthia Mannion, Faculty of Nursing, University of Calgary
Nilufer Hasanove, Faculty of Nursing, University of Calgary
MJ Kim, Faculty of Nursing, University of Calgary
It is common to use snowball sampling for qualitative studies. Subjects recruit future subjects from among those they know to recruit other participants. This is a particularly useful when exploring hard to access populations such as drug addicts or those who practice behaviors outside the norm. Pica, the practice of eating nonfood items, is a covert behavior in many western countries. It is practiced by immigrants whose country of origin commonly accepts pica, but as it is a universal cultural all peoples have been known to practice. We set out to study pica in pregnant women recruiting by snowball sampling but after 11 months were unsuccessful in achieving sufficient participants. We returned to ethics requesting the use of social media thinking the anonymity afforded by online discussion would help responders participate. We set up a social media account inviting people to join in a discussion of pica. In less than 2 weeks, we had people agreeing to participate in the study who fit our inclusion criteria. Participants were interviewed online in private chat rooms responding to the study query. We discovered a social network connecting many participants that included links to sites for online ordering of clay, clay sources of particular qualities, and textures, and support associations. Descriptions of cravings, and the joys and troubles of practicing pica, were shared online. We discovered that this sampling allowed us to discover a social network connecting a hidden population sharing the practice of pica.
The Merits of Using Two-Eyed Seeing in Indigenous Health Research: Elders Experiences of the 2011 Flood and Healing Strategies
Donna Martin, University of Manitoba
Shirley Thompson, University of Manitoba
Myrle Ballard, University of Manitoba
In 2011, the Province of Manitoba protected residents and property upstream by diverting water to Lake St. Martin, damaging land, destroying infrastructures, and displacing thousands of First Nation peoples. In the case of Little Saskatchewan First Nation (LSFN), half of its on-reserve members evacuated. To date, these community members continue to reside in temporary housing in Winnipeg with no knowledge of when they will return home. A community advisory board, comprised of two Elders and one Council member, was established to guide the study. The purpose of this critical ethnography was to systematically document Elders’ experiences, health outcomes, and future plans. Ten LSFN Elders, who experienced induced displacement, volunteered to participate in video-recorded, semistructured interviews, which were transcribed verbatim and analyzed. In this presentation, we share how two-eyed seeing was used to comprehensively describe Elders’ experiences of the 2011 flood and share their wisdom about healing and moving forward. Two-eyed seeing was identified by Albert Marshall, Elder (Eskasoni Mi’kmaq First Nation, Cape Breton) in 2004 and refers to learning to see from one eye with the strengths of Indigenous knowledge and from the other eye with the strengths of western science. During preliminary analysis, the research team identified profound grieving stemming from multiple losses from the flood, compounded by oppressive policies and legislation that govern their daily lives. Data were revisited using both eyes, which facilitated the emergence and identification of themes including self-determination and hope along with key strategies to reconnect community members and rebuild their community.
Incorporating Patients’ Perspectives into Outcome Assessment for a Trial of Pressure Garment Therapy in Burns Scar Management Using Qualitative Research
Jonathan Mathers, Institute of Applied Health Research, University of Birmingham
Melanie Calvert, Institute of Applied Health Research, University of Birmingham
Naeim Moiemen, University Hospitals Birmingham NHS Foundation Trust
Laura Jones, Institute of Applied Health Research, University of Birmingham
Pegasus is a 2-year trial feasibility study funded by the U.K. National Institute for Health Research to establish whether a definitive trial of pressure garment therapy (PGT) in burns scar management is feasible. Pegasus includes an external pilot trial with integrated qualitative research with burns patients. This is designed to reflect on the range and content of outcome measures that might be taken forward to a definitive trial. In-depth interviews have been undertaken with a range of burns patients, including adults and parents of pediatric patients. These focus on patients’ experience of PGT, burns injury, and their outcome priorities. Analysis has focused on core outcome domains that should be considered within a trial of PGT. The experience of burns injury, treatment, and scar management is highly complex. Outcome domains identified from these interviews include scar characteristics and appearance, movement and function, itch and pain, psychosocial dimensions, and also the burden of scar management regimes. Outcome priorities vary between patients and time points. At present, there is a lack of validated measures of scar properties that are targeted by scar management techniques, for use in trials such as this. A rapid review of health-related quality of life (HRQoL) measures to assess these domains has identified two HRQoL tools currently in development by colleagues in Bristol (U.K.) and Brisbane (Australia). An understanding of the experience and outcomes of treatment from a patient perspective can usefully inform the selection of outcome measures including patient-reported measures for clinical trials.
Professional Misconduct: An Analysis of Disciplinary Cases Against Registered Health Professionals in New Zealand
Patricia McClunie-Trust, Waikato Institute of Technology
This research examines factors contributing to professional misconduct among registered health professionals in New Zealand. It seeks to understand more about the factors contributing to situations where health professionals fail to recognize and manage situations that result in disciplinary action. A multiple case study approach was used to analyze New Zealand Health Practitioners Disciplinary Tribunal (HPDT) cases published between 2012 and 2015. Data were developed from 33 case reports published full text on the HPDT website involving practitioners who had been found guilty of professional misconduct. Findings were developed from the research data both deductively and inductively, creating theoretical interpretations grounded in an iterative process of cross-case synthesis. The findings show three core themes that are present in the analysis of cases, including failure to “benchmark” best practice, inability to moderate behavior, and inability to reflect and learn with colleagues. Key factors contributing to the failure to recognize and manage professional situations indicated a “Perfect Storm” that gathered around professional, personal, and organizational issues. Professional isolation, lack of knowledge and skill, challenging client situations; personal stress, neediness, or “stuckness”; and organizational factors such as high acuity/demand, all contributed to this Perfect Storm. Health practitioners and their colleagues should notice moments when their own or others behavior is inappropriate or unreasonable in the context of a client’s care, particularly responses that are a recurring pattern. Ongoing education about professional issues is an essential requirement for the health workforce as more complex demands and work roles impact on practitioners.
Letting Go of Expertism
Padi Meighoo, Western University
Often health equity or social justice health researchers wonder why those neoliberal capitalist types can’t see the injustices of the world as clearly as we do. Many health science students ask “how can we get ‘those people’ to do the right thing”? Really smart public health practitioners are afraid that if we ask our communities what their health problems are, they will give us the wrong answer (because only experts know the correct answer is always “obesity”). Why is the world not listening to us really smart people? There are a few possible, interrelated reasons why we may feel that our expertise is being so disrespectfully ignored. First of all, a lot of other people are smart too. Second, we are fortunate enough to live in a democracy where decisions about what is in the public’s interest are made through a democratic political process. But most importantly to health equity research: democratic decision-making is a cornerstone of social justice. My “Golden Nugget” is learning how to feel grateful for being a single voice among many equal voices.
Remoteness in the Northwest Territories: A Barrier for Intimate Partner Violence Survivors
Pertice Moffitt, Aurora Research Institute
In the Northwest Territories (NWT), 27 of the 33 communities are populated by less than 1,000 people. Although remoteness has a geographical definition, it can also be defined by other factors such as the adverse interplay of social determinants of health, social isolation, and depleted resources. Remoteness was a recurrent theme in a 5-year Social Sciences and Humanities Research Council Community-University Research Alliance (SSHRC-CURA) funded project that was conducted in the Prairie Provinces and NWT. The project entitled “Rural and Northern Community Response to Intimate Partner Violence (IPV)” occurred 2011 to 2016. Participants in the NWT, frontline workers (n = 56), were recruited into the study purposively and through snowball techniques. The methodology varied over 5 years. In the first year, we completed a scan of resources available for IPV survivors, IPV statistics from the Royal Canadian Mounted Police (RCMP) and developed a geographical information systems map that highlighted the IPV incidents and the resources. This map guided the recruitment process in the second year. In the second year, we conducted individual interviews with frontline workers (RCMP, shelter workers, victim service workers, community health nurses, and others) using grounded theory methods. In the third year, we conducted focus groups in two communities. In the fourth year, we created community narratives, and, in the final year, we developed an action plan. The findings included a model where we explicated the central problem of “our hands are tied” with three social processes: “putting up with violence,” “shutting up about violence,” and, “getting on with life.” The action plan highlights ways to move forward. The purpose of this presentation is to highlight remoteness as it affects survivors of IPV and frontline workers.
When High Pressure, System Constraints, and a Social Justice Mission Collide: A Socio-Structural Analysis of Emergency Department Social Work Services
Megan Moore, University of Washington
Margaret Cristofalo, University of Washington
Danae Dotolo, University of Washington
The emergency department (ED) can be a critical intervention point for many patients with multifaceted needs. Social workers have long been part of interdisciplinary ED teams. This study aimed to contribute to the limited understanding of the social worker–patient interactions and factors influencing social work services in this setting. This paper reports a qualitative content analysis of social work medical record notes (N = 1,509) of services provided to trauma patients in an urban, public, Level 1 trauma center, and an in-depth analysis of semistructured interviews with ED social workers (N = 10). Eight major social work roles were identified: investigator, gatekeeper, resource broker, care coordinator, problem solver, crisis manager, advocate, and discharge planner. Analyses revealed a complex interplay between ED social work services and multilayered contexts. Using a social–ecological framework, we identified the interactions between microlevel or individual level factors, mezzolevel or local system-level factors, and macro environmental and systemic factors that play a role in ED interactions and patient services. Macrolevel contextual influences were sociostructural forces including socioeconomic barriers to health, social hierarchies that reflected power differentials between providers and patients, distrust, or bias. Mezzolevel forces were limited resources, lack of health-care system coordination, and a challenging hierarchy within the medical model and the pressure to discharge patients quickly. Microlevel factors included characteristics of patients and social workers, complexity of patient stressors, empathic strain, lack of closure, and compassion. All of these forces were at play in patient–social worker interactions and impacted service provision. Social workers were at times able to successfully navigate these forces, yet at other times these challenges were insurmountable. A conceptual model of ED social work and the influences on the patient–social worker interactions was developed to assist in guiding innovative research and practice models to improve services and outcomes in the complex, fast-paced ED.
Going Over the Waterfall: Decision-Making After LVAD for Destination Therapy
Megan Morrison, University of Washington
Background: Cardiovascular disease is the leading cause of death in the United States. Left ventricular assist devices (LVADs) for destination therapy (DT) can prolong life and improve quality of life in end-stage heart failure, but LVADs require complex ongoing medical care and come with significant treatment burdens and risks. LVADs that are not expected to bridge the patient to a heart transplant or full recovery are termed DT. This study investigated how patients with LVADs for DT make decisions.
Methods: A qualitative design, where semistructured interviews were conducted between June 2015 and December 2015 with 11 participants who had LVADs for DT, was used. The average age of the participants was 67, with 10 males and one female participant. The median time from implantation of the LVAD to date of interview was 3.7 years (range: 1.17–7.25). Participants were recruited from a large, academic medical center in the Pacific Northwest. Interviews were audiotaped, professionally transcribed, and coded. Participants were asked about how they make decisions concerning their health care. Results: The core process of decision-making was having “no choice.” This core process was subdivided into supporting processes of being in a system of care and having already invested so much in the LVAD. Other interacting processes were (a) personal bias, (b) reacting, (c) perceiving what clinicians thought the participant should do, (d) unclear goals and hopes, (e) isolation, and (f) severely constrained planning for the future.
The Decision to Undergo Genetic Mutation Status Testing: A Focus on the Family
Kristen Moulton, Canadian Agency for Drugs and Technologies in Health
Sarah Garland, Canadian Agency for Drugs and Technologies in Health
Laura Weeks, Canadian Agency for Drugs and Technologies in Health
Colorectal cancer (CRC) is one of the most common malignancies, representing the third most common cancer in men and the second in women worldwide. Approximately 3–5% of CRCs are attributable to a hereditary cancer predisposition related to DNA mismatch repair deficiency (dMMR). Hereditary nonpolyposis colorectal cancer (HNPCC) or lynch syndrome (LS) is the most common familial CRC syndrome and predisposes those with the mutation to colorectal and other cancers (people with LS have a 70–80% lifetime risk of developing any type of cancer). The DNA of cancer tumors can be sequenced in order to identify dMMR status, which has implications for personalized treatment as well as to help to identify the presence of LS. A systematic review of qualitative and cross-sectional studies regarding patients’ and caregivers’ experiences with dMMR testing was undertaken. Two major analytic themes emerged from a thematic synthesis of the results of the 89 included studies, both of which focused not on the individual being tested, but rather the family implications of learning and living with test results. This emphasis on family was demonstrated in the decision to undergo testing, sharing test results, and in living with the knowledge of mutation status. Although testing was initially thought to be an individual decision, family implications were among the top concerns of those being tested. This presentation will focus on the family implications of testing as well as implementation considerations for a universal dMMR testing program such as family-based genetic counseling and education programs.
With Youth as Partners, Using Arts-Based Methods to Reduce the Stigma of Mental Health and Stimulate Intergenerational Dialogue With the Community
Jennifer Mullett, Centre for Healthy Communities Research
Sarah Fletcher, Centre for Healthy Communities Research
A review of innovative youth mental health programs indicated that one essential component of success is youth participation at all levels and a stigma-free culture of care (McGorry, Bates, and Birchwood, 2013). Two directives for research emerge from this conclusion: encourage and support youth participation and reduce the stigma associated with accessing care. Our preliminary research confirmed that youth often do not access mental health services because they are afraid of being labeled by peers or others. We engaged youth in a collaborative action research project designed to reduce the stigma of mental health challenges and to create a greater sense of belonging in the community. Youth were trained as research assistants to facilitate a community forum, conduct focus groups, and to use two arts-based research methods, photovoice and digital stories, to illustrate their struggles, their resources for healing, and their suggestions for improvements in the system and in their community. To showcase the youth participants’ ideas, recommendations, videos, and photos, we held a celebratory second community event with interactive activities. In our presentation, we will highlight youth recommendations, show two short digital stories, some examples of the photovoice projects, and the commitments made by community members at the celebratory event. With qualitative methods, the process of the research is often as effective as the results; our research indicated advantages and disadvantages of each of the qualitative methods for engaging youth, being a medium for expression of intense thoughts and for empowering the youth to be leaders.
“It’s a Small Town—People Get Judged Really Easily”: Exploring How Youth Discursively Produce LGBTQ Issues in Three BC Communities
Cara Ng, Simon Fraser University
Rebecca Haines-Saah, University of Calgary
Joy Johnson, Simon Fraser University
The government of British Columbia has, until only very recently, mandated antihomophobia policy for schools boards. Prior to this policy development, there were disparate approaches to addressing discrimination and harassment of LGBTQ students in school districts across the province. Given recent studies which point to a correlation between the presence of LGBTQ-positive supports in schools and improved health and well-being for students, implementing a province-wide antihomophobia policy framework is an integral step to ensuring that schools are safe, healthy environments for young people. Using a Foucauldian Discourse Analytic Approach, we analyzed narrative interviews with youth about LGBTQ issues in three distinct communities in British Columbia, Canada: a small town situated in the northern part of the province, Vancouver, and Abbotsford. We explore the ways locally specific as well as mainstream sociopolitical discourses may figure into young people’s talk about sexual minority communities and issues. Our analysis suggests that youth perceptions about these issues were connected to discourses that appear to be both locally derived and situated within a broader context. We argue that the locally derived understandings were indicative of uneven levels of support and acceptance towards sexual minority communities, illustrating the need for a provincial-level policy framework to guide the work of local school districts in supporting LGBTQ students and for ensuring that schools are safe spaces for all students across British Columbia. We also argue that mainstream sociopolitical discourses impacted youth perspectives beyond the boundaries of place.
Youth’s Imagined Futures: An Exploration of Young People’s Aspirations and Implications for Fostering Youth Mental Well-being
Cara Ng, Simon Fraser University
Rebecca J. Haines-Saah, University of Calgary
Carla T. Hilario, University of British Columbia
Emily K. Jenkins, University of British Columbia
This presentation is based on findings from the researching adolescent distress and resilience (RADAR) project, a qualitative study that involved 83 young people aged 13–18 in three communities in British Columbia, Canada. To understand how young people’s aspirations are shaped by social context and connected to local configurations of place, gender, “class,” and “race,” we undertook a comparative analysis of young people’s narrative interviews about “imagined futures.” Using a Bourdieusian lens, we compared two of the study sites and explored how youth described their aspirations and their perceptions of the supports and structures significant for influencing their future trajectories. Bourdieu’s concepts of habitus, capital, and field were used to unpack the ways youth described what they deemed to be possible for their futures. This social and contextual frame builds on the literature concerning aspirations at the individual level, wherein an individual’s “positive” and goal-oriented disposition has been shown to be a protective factor for mental health and well-being. Our analysis demonstrates that while family members were described as playing an instrumental role in shaping youth’s aspirations in both locations, their perceptions about opportunity and mobility varied greatly between the two contexts. Narratives, particularly in one community, hinted at racialized and gendered inequalities in their local settings as key influences for how they were able to imagine their futures both within what was perceived as “typical” or expected in their particular context and peer group, as well as outside these expectations. We consider implications for community-level strategies aiming to improve young people’s future trajectories, and interventions intended to have positive impacts on health and well-being.
Organ Donation Determinants and Approaches: A Critical Synthesis Review
David Nicholas, University of Calgary
Lori West, University of Alberta
Timothy Caulfield, University of Alberta
Andrew Mantulak, King’s University College
Despite chronic shortages in available organs for transplantation in Canada, there is ongoing uncertainty about best methods to (i) increase awareness about the issue among the general public and public policy decision makers and (ii) design effective structures and processes to optimize organ procurement and donation. To address these gaps in knowledge and practice as well as inform future directions for heightened organ donation in Canada, a review of the worldwide literature will examine barriers and facilitators of organ donation and approaches for increased donation. The project specifically comprises (i) a synthesis review of relevant studies, (ii) development of an evidence-informed framework mapping study characteristics and outcomes, and (iii) consultation with key stakeholders to solidify knowledge advancement and application through the development of practice statements and policy recommendations. Guided by established processes for analyzing literature, an in-depth qualitative critical synthesis is underway, including an appraisal of existing interventions and approaches in organ donation with particular consideration of the outcomes emerging from various approaches. Trends and gaps are being identified, as are contextual elements such as region and socioeconomic status and cultural background of target populations, and so on. These are being linked with their interventional approaches and outcomes. The existing pool of literature is currently being explored in relation to changing priorities over decades, and the views on using financial incentives to bolster donation rates over time. Next steps and implications will be explored.
Teaching and Doing Qualitative Inquiry Care Ethically: The Importance of Responsiveness Reflectivity, Embodiment, and Relationality in Care-Ethical Inquiry
Alistair Niemeijer, University of Humanistic Studies
Vivianne Baur, University of Humanistic Studies
Merel Visse, University of Humanistic Studies
As care ethicists to whom qualitative inquiry is integral to their own research, we have also taught qualitative inquiry courses to master students of care ethics for several years. Although these courses have generally been met with great enthusiasm, we have recently encountered a certain apprehensiveness amongst students with regard to their own interpretations and creativity during analysis. Our epistemological starting point has always been phenomenological–hermeneutic inquiry (rather than positivism). However, many of our students were unsure how they should deal with their own preconceptions, experiential knowledge, and personal background(s). The insight that they themselves, as opposed to the analytic software or specific methodologies were the most important stepping-stone in order to come to sound interpretation of the data, often did not permeate amongst our students until the end of the course. This experience has led to an adjustment of our qualitative enquiry courses, where now we aim to pay more attention to the specific role of the “care ethical qualitative inquirer”; shifting from a practice of responsibilities to a practice of care. Accordingly, in our view, this entails a specific orientation on four key concepts: relationality, responsiveness, reflectivity, and embodiment. Through these concepts, we aim for the inquirer to gain both access to the lived experience of herself and others, whilst at the same time outlining criteria in order to enable and advance inclusivity in the research process. We will present how we translated these concepts into practical educational tools in the courses we teach.
Tapping the Well of Personal Experience or Promoting Good Care? An Autoethnographic Study of a Health-Care Scholar Living With Chronic Illness and Disability
Alistair Niemeijer, University of Humanistic Studies
Merel Visse, University of Humanistic Studies
This presentation aims to explore how autoethnographical research on the experiences of people with chronic illness and disability can promote both good care and a social justice agenda (cf. Denzin, 2014, p. x). Autoethnography can be conceived of as a methodology that allows us to examine how the private troubles of individuals are connected to public issues and to public responses to these troubles (Mills, 1959, in Denzin, 2014). In this case, the so-called private troubles are those of the first author, as opposed to using “external data” of an informant. This first author is a scholar working at a university department, who lives both with a chronic illness and a young son with Down’s syndrome in, what Arthur Frank has so aptly called, a remission society, where patients are “effectively well but could never be considered cured” (Frank, 2005, p. 163). Issues of illness narratives, public discourse, and policy are necessarily framed by ethical questions, as normative ideas often dictate policy and public discourse. By drawing on autoethnographic research, we aim to critically question the dominant public discourse on illness and disability. By shifting attention to our own private troubles, thereby framing the narrative, it will be argued that in order to improve care practices, personal illness and disability narratives and their imbrication with public narrative and autoethnographic methodologies should be further pursued.
An Interpretive Phenomenological Analysis Study of Paternal Absence Among Oil Patch Workers in Alberta
Simon Nuttgens, Athabasca University
Work-related parental absence is common in contemporary family life. Industries such as aviation, fishing, logging, mining, and petroleum extraction all can involve work away from family for significant periods of time. In the province of Alberta, Canada, there are many sites for petroleum extraction. The industry’s locations in Northern Alberta have become the work site of many employees who leave their homes for extended periods of time and return home for extended days off. This requires families to develop creative ways to adapt to the stresses created by such a work schedule. There is ample research on the effect of military deployment on families (e.g., Kazmarek & Sibbel, 2008), some information on how mining families are impacted by such a work schedule (e.g., Wray, 2013), and a small number of studies exploring the impact on British and Norwegian offshore oil workers and their families (e.g., Ljos’ & Lau, 2009; Parkes, Carnell, & Farmer, 2005). However, there is no research currently available that has investigated the impact of paternal absence on families in Canada’s petroleum industry. In this study, we interviewed 10 heterosexual couples who had children living in the home. We used interpretative phenomenological analysis (Smith, 2004; Smith, Flowers, & Larkin, 2009) to develop thematic analyses within, then across, cases to derive an experiential understanding of work related paternal absence among oil patch families. Results indicated a tripartite thematic structure within which 19 subthemes were subsumed.
Deliberative Dialogue With a Restorative Lens to Study Safety Culture
Elisiane Lorenzini, Escola de Enfermagem, Universidade Federal do Rio Grande do Sul
Nelly D. Oelke, University of British Columbia–Okanagan Campus
Patricia B. Marck, University of Victoria
Safety culture is a key component of patient safety. Many patient safety strategies in health care have been adapted from high reliability organizations (HRO) such as aviation. However, attempts to transform the cultures of health-care settings through HRO approaches have had mixed results to date. We propose and have tested a methodological approach for safety culture research which integrates the theory and practice of restoration science with the principles and methods of deliberative dialogue to support active engagement in critical reflection and collective debate. Restorative research in health care integrates a socioecological school of complex adaptive systems theory with collaborative, place-sensitive study of local practice contexts. Deliberative dialogue brings together all stakeholders to collectively develop solutions on an issue to facilitate change. Data are collected through participatory, expert-led (practitioners or clients) digital photography walkabouts with photo narration. Photo elicitation focus groups using deliberative dialogue techniques are conducted to review key images and stories from the photo walkabouts. In this presentation, we will describe how these two innovative approaches in health services research can be used together to provide a comprehensive, effective method to study and implement change in safety culture. Examples will be provided from a recently conducted research study in the Advanced Centre of Neurosurgery in Southern Brazil. Together these approaches can be used to actively engage people in the study of safety culture to gain a better understanding of its elements. More importantly, the synergistic use of these approaches can move health-care professionals towards actionable strategies for improving patient safety within today’s complex health-care systems. These strategies will be of interest to researchers, decision, and policy makers and may be applicable to a broader range of issues in health system redesign.
Concept Analysis of Cancer Survivorship According to Rodgers’ Evolutionary Model
Rafaela Azevedo Abrantes de Oliveira, University of São Paulo at Ribeirão Preto College of Nursing
Márcia Maria Fontão Zago, Department of General and Especialized Nursin, University of São Paulo at Ribeirão Preto College of Nursing
Introduction: Survivorship is much more than a concept, and it is applicable to those diagnosed with cancer regardless of the course of the disease. Aim: The goal of this study was to analyze the concept of cancer survivorship according to the Rodgers’ evolutionary model of conceptual analysis. Methods: Systematic literature search in the following databases PUBMED, CINAHL, Web of Science, LILACS, and PsycINFO. The sample consisted of articles published in Portuguese, English, and Spanish between 2000 and 2014. Full publications addressing related terms such as “survivorship,” “adult and elderly,” “survivor,” and “cancer survival” were selected. The final sample contained 39 selected studies that were analyzed based on the Rodgers’s model (six steps) and inductive thematic analysis with a discussion based on the concept of culture. Results: Cancer survivorship is a broad concept that can be understood in eight themes such as changes in life plans, dualities of positive and negative aspects, life reflections, identity change, individual experience, symptom control, the need of support, and quality of care. These themes are summarized in two attributes: liminality process and culturally congruent care. Conclusions: This article contributes to the understanding of cancer survivorship and the process inside this concept. It draws attention to the need for future investigations to enhance this understanding in the personal and clinical levels.
The Life Experience After Cancer Diagnostic, Who Am I? Am I a Cancer Survivor?
Rafaela Azevedo Abrantes de Oliveira, University of São Paulo at Ribeirão Preto College of Nursing
Vander Monteiro da Conceição, University of São Paulo at Ribeirão Preto College of Nursing
Jeferson Santos Araújo, University of São Paulo at Ribeirão Preto College of Nursing
Márcia Maria Fontão Zago, University of São Paulo at Ribeirão Preto College of Nursing
Survivorship is much more than a concept. Rather, it is a general idea that applies to those diagnosed with cancer regardless of the course of the disease. It is understood as a phase that begins at diagnosis and continues until the end of life. The study aimed to understand how a cancer patient sees himself after the cancer diagnostic through the cancer patient’s narrative, based on medical anthropology and narrative case study. It was performed two semistructured interviews with the same patient, what allowed us to build a narrative with the patient’s experience. Then, the narrative was analyzed by the inductive thematic analysis. Afterwards, the meanings were organized and summarized in an only category “retaking control of life.” Throughout the narrative, the patient tries rebuilding her life and understands how the changes influenced your life and, consequently, to attribute new meanings to that. As a result, the nurse can help the cancer survivors to cope each phase after cancer diagnosis as well as help them to reflect about their own life and retake the control.
Conducting Collaborative and Community-Based Research in Indigenous Communities? Consider Yourself Lucky
Richard T. Oster, University of Alberta
The ENRICH Study Team, University of Alberta
Community-based research is increasingly being utilized in attempts to understand, meet, and reduce the many and severe health and social disparities some Indigenous populations face. This approach is built upon a foundation of strong researcher/community partnerships, shared power, equitable resourcing, and mutual understanding and benefits. Much has been written about approaches to community-based research with Indigenous communities, as well as the many challenges a community-based researcher may face (e.g., out of pocket expenses, time-consuming processes, failed meetings). What is missing in this literature is how truly wonderful and humbling the experience can be. In this “golden nugget” presentation, I will highlight some key reflections of being a non-Indigenous researcher conducting community-based research (“ENRICH First Nations project”) in collaboration with a large Cree community. Did I encounter challenges? Absolutely! However, the benefits have far outweighed the challenges. I laughed, I ate, I learned, I danced, I sang, I saw beauty, I saw strength, I connected with nature, I attended sweats and ceremonies, I made lifelong friendships, and most importantly: I lived. This work has enriched my life and that of my family. It has made me a better person. It has provided me knowledge and life lessons that I will forever be grateful for. If graduate students, researchers, policy makers, health-care providers, or others have the opportunity to work collaboratively with an Indigenous community rather than worrying (or dare I say it, complaining) about potential difficulties, my advice would be to consider yourself lucky.
Aging With Pride: An Exploration of the Social Life of Gay Men Over 65
Austin Oswald, University of Georgia
Kathryn Roulston, University of Georgia
We are living in an aging society. A recent report conducted by the U.S. Census Bureau found that the number of adults over 65 is increasing at a faster rate than any other sector (Ortman, Velkoff, & Hogan, 2014). Given this reality, it can be expected that the number of lesbian, gay, bisexual, and transgender (LGBT) older adults will also increase. The rise in attention on human rights issues for LGBT people, coupled with the aging population, positions research on LGBT aging as timely and compelling. Although issues affecting LGBT people are more visible in the public arena, the social life of LGBT older adults remains largely understudied (SAGE, 2014). This preliminary study focuses on the experiences of older gay men. The purpose was to explore the meaning and significance that gay men over 65 ascribe to their relationships. This paper reports emergent findings from an ongoing study. Principles from Charmaz’s (2014) constructivist grounded theory were used to guide the investigation. Data were generated through in-depth qualitative interviews with four gay men aged 65–76 in New York City. Transcripts were analyzed using the constant comparative method and revealed that older gay men report (1) complex and multifaceted social lives shaped by significant lived-through events, (2) judgment in queer spaces unique to this population, (3) invisibility that perpetuates isolation and loneliness, and (4) intimacy as successful aging. This study adds to our understanding of the complex needs of older gay men. Findings are of interest to health-care workers, social policy developers, and other professional working in the field of aging.
Implementing a Health Equity Lens in Public Health
Bernadette Pauly, Centre for Addictions Research of BC and University of Victoria
Sana Z. Shahram, Centre for Addictions Research of BC
Marjorie MacDonald, University of Victoria
Beginning in 2005, British Columbia (BC), Canada, has been undertaking a process of public health renewal with the application of a health equity lens as integral to the implementation of public health programs. As part of the equity lens in public health (ELPH) research project, focus groups and individual semistructured qualitative interviews were conducted with participants from six health authorities and the Ministry of Health in BC at two points in time. Participants included senior executives, public health directors, medical health officers, managers, and frontline providers from two exemplar programs: mental health promotion and preventing the harms of substance use. Using situational analysis, we undertook an analysis of the broader systems context in which public health is implementing a health equity lens. We identified key contextual factors that both facilitated and acted as barriers to the uptake of health equity within public health programs. In the initial phase of the project, participants reported that the application of a health equity lens is a challenge as health equity is understood in diverse ways, and there is little practical guidance about how such a lens can be applied. However, in the second phrase, participants reported moving from talk to action and increasing application of a health equity lens. These findings highlight both opportunities and challenges that can inform the consistent application of a health equity lens in the health system and the overall contribution of public health to reducing health inequities.
The Lived Experience of Infertility Among Young Men After Cancer Treatment
Lyzandra L. Pereira, University of New Brunswick
Krista L. Wilkins, University of New Brunswick
Although over 75% of adolescent and young adult (AYA) men want to be a father after cancer treatment, they do not know how cancer treatment can affect their fertility. There is a gap in knowledge on how these young men cope with infertility in their everyday lives. Accordingly, a qualitative study guided by the philosophy of hermeneutic phenomenology was conducted to elicit detailed descriptions of the lived experience of infertility among young men after cancer treatment. Data were collected through semistructured interviews with young men, reflexive journal, field notes, and documents. Participants included four men (average age = 28.5 years) who had cancer. They described infertility after cancer as the paradox of being infertile and the desire to be a father. Three themes emerged from the interviews: (1) infertility affects me, (2) infertility affects my relationships, and (3) I want the choice to bank sperm. Infertility touches all aspects of these young men’s lives, challenging their sense of self, relationships, and fatherhood goals. There are limited health-care services and supportive care for the AYA men who experience infertility. Understanding the experiences of infertility among young men after cancer treatment can help health-care providers design and implement interventions around the issues of sexuality, fertility, and fatherhood.
Graduate Nurse Satisfaction With Transition: A Mixed Method Study Involving a Continuous Quality Feedback Loop
Craig Phillips, University of South Australia
Amanda Kenny, La Trobe University Bendigo
Adrian Esterman, University of South Australia
This mixed method study focused on newly qualified nurses and their transition to practice. Transition from university to practice is a time of heightened stress for new graduates, leaving many disillusioned and dissatisfied in their role. Globally, attrition rates of new graduate nurses are alarming. This four-phase study included a unique continuous quality assurance feedback loop. This process, used in other industries, has not been previously used to support graduate nurse transition. Newly qualified nurses in two major health services were e-mailed monthly over a 10-month period and were asked questions about transition and satisfaction. Satisfaction scores were calculated. Deidentified aggregated data were sent to health service management with encouragement to share the data with managers, supervisors, and graduates. Whilst the quantitative data were not statistically significant, satisfaction scores improved over time, and one health service consistently outperformed the other. Qualitative data, indicated wide variation in new graduate support; problems with orientation, patient allocation, and lack of professional respect. A workshop was conducted with key stakeholders, including new graduates, on barriers and enablers for transition success. Interviews with graduate nurse coordinators confirmed the proactive stance taken by one health service, with monthly reports communicated to ward managers and those working with new graduates. This study provides important insights into nurse transition to practice and the method has global relevance as a continuous quality assurance process that enables immediate action to increase workforce satisfaction with a health-care setting.
It’s Not Food Because You’re Hungry; It’s Food to Keep You Alive: Parental Experiences of Raising a Child With MCADD
Hilary Piercy, Sheffield Hallam University
Kasia Machaczek, Sheffield Hallam University
The newborn bloodspot screening (NBS) programmes are used to detect a wide range of metabolic and other inherited disorders including medium-chain acyl-CoA dehydrogenase deficiency (MCADD) which has been added to the programme in recent years. MCADD health outcomes depend upon specific dietary management by parents to meet the metabolic demands of the body and prevent periods of fasting, particularly in the first year of life. This places a substantial burden on parents and family as reported in previous research. There is a need to understand how this burden manifests itself to enable health professionals to adequately support parents. This qualitative study aimed to explore the parental experience of raising a child with MCADD, the challenges parents faced and the support they received. A purposive sample of 10 parents was recruited to the study through specialized metabolic disorder services within the National Health Service in England. Children’s ages ranged from 2 to 12 years. Data collection involved semistructured interviews conducted in the parental home. Data were analyzed using a thematic approach that incorporated inductive and deductive processes. Three themes emerged from the data: the demands of dietary management, coping with illness episodes, and living a normal life. A cross-cutting category was the way in which parents grew into the role as forcible advocates for their child. This paper summarizes the key findings from the study and considers their application to health professionals.
Models of HIV Specialist Nursing Provision Identified From a National Study
Hilary Piercy, Sheffield Hallam University
Gill Bell, Sheffield Teaching Hospitals NHS Foundation Trust
Christine Bowman, Sheffield Teaching Hospitals NHS Foundation Trust
There is widespread recognition that HIV specialist nursing makes a significant contribution to HIV care. The nursing provision within HIV services has developed incrementally in response to perceived local need contributing to substantial variability across England. There is a need to review current models of HIV nursing to inform ongoing service development.
This was a three-part multimethod qualitative study involving: (1) interviews with 19 stakeholders representing professional or service user groups, (2) interviews with nurse/physician pairs from 21 HIV services (13% of services in England), (3) case studies involving site visits to five services. A framework analysis approach was used to manage and analyze the data. Findings indicated substantial variability in specialist nursing roles and the extent of role development. There was specialist HIV nursing provision in both hospital and community settings where complementary roles ranged from delivering nurse-led clinics and psychosocial/adherence support to caseload management and care coordination. Community care was particularly directed toward the minority of vulnerable patients with complex needs. Four distinct models of HIV specialist nursing provision were evident which reflected the variability in community nursing provision across the country. The lack of HIV community nursing provision in some areas raised concerns about the ability of services in those areas to care for their most vulnerable patients. The potential impact on health outcomes for those patients and the associated cost implications are substantial.
Visible and Invisible Disability: Paradoxes of Living With Chronic Obstructive Pulmonary Illness
Charlotte Pooler, University of Alberta
Despite the prevalence of chronic obstructive pulmonary disease (COPD), people are often underdiagnosed or diagnosed late in the stage of their illness. In the past 15 years, there has been an increase in research to attain understanding of perceptions and experiences of persons who live with this progressive, distressing, and life-limiting illness. A recent review of the qualitative evidence in COPD identified that at times people purposefully conceal their illness, symptoms, and distress from family, strangers, and health professionals, yet at other times reveal their disease. Cough and shortness of breath that are distressing and limit activities of their daily lives may be normalized and attributed to smoking, instead of symptoms of illness. This subsequent analysis focused on exploring the dichotomies or paradoxes within descriptive experiences of participants with COPD from peer-reviewed qualitative research studies, which were limited to those published in English. Findings indicate that there are numerous paradoxes when living with chronic obstructive pulmonary illness, beginning for some with the diagnosis of the disease. They include knowing, not knowing; concealing, revealing; limiting, normalizing; perceiving, preserving; and anticipating, halting. These paradoxes will be described as they are experienced within the complexities and challenges of living with this illness including potential implications for health-care practice and policy.
Dropped Cues in Patient–Physician Interactions: How Discourse Analysis Finds Areas for Coaching
Charlene Pope, Ralph H. Johnson VA Medical Center
Bertha North-Lee, Ralph H. Johnson VA Medical Center
Boyd Davis, University of North Carolina at Charlotte
Communication problems have been identified as one of the most common sources of medical errors. In medicine, a dominant focus on the content of what was said in primary care visits often misses the processes that discourse analysis can reveal. As a situated activity, patient–physician interactions have been characterized by physicians missing patient expressed cues and patient reports of unmet concerns after visits. Interactional sociolinguistics provides a means of exploring cueing and inferences in patient–provider communication, less available in more medically oriented health communication studies. Examples will demonstrate the phenomenon of dropped cues for 20 Veterans with well-controlled diabetes and 20 Veterans with poorly controlled diabetes. Veterans who are asked repeated Yes–No questions, a sign of physician topic control, tended toward more dropped cues. When providers responded to contextualization cues and emotional cues, conversations exhibited more alignment and shared meaning. Although a qualitative study, the simple frequency of more dropped cues for those with poorly controlled diabetes presents a pattern suggesting a need for targeted intervention. As an attribution, patient cues related to emotion seem the type most often not picked up in the next conversational turn, as transcription examples will demonstrate. Findings also suggest a need to examine how dropped cues may lead to less postvisit satisfaction and poorer patient provider relationships affecting adherence. As a source for hypothesis generation, patients with more controlled diabetes seemed to exhibit less dropped cues, a practice suggesting potential engagement deserving further study.
The Good Ole’ Girls Nursing Club: The Male Student Perspective
Kimberly Priode, Appalachian State University
Teresa Carnevale, Appalachian State University
Diversity in nursing remains difficult with little progress made in the recruitment of males. However, in one Bachelor of Science in Nursing (BSN) undergraduate program in the southeastern United States, the percentage of males met or exceeded the national average of no more than 10%. Researchers took advantage of this opportunity by interviewing male BSN students regarding their experiences. The intent of this research on diversity is centered on the male nursing student perspective of current nursing education strategies in recruiting and supporting males in undergraduate programs. From a phenomenological approach, male nursing students were asked questions in a focus group setting regarding their experiences of what factors support or contradict diverse students in being successful in completing a nursing program. There were four themes interpreted by nurse educator researchers from written transcripts which included, exclusion, gender bias, career expectations, and acceptance. Of the four, two were seen as barriers or factors that negatively impact males in entering and successfully progress through a nursing program. The third theme, career expectations, could be seen as both a motivating factor and negating factor while the last theme, acceptance, was identified as a significant positive factor in assisting males to matriculate and successfully progress in a nursing program. Nurse educators and administration that plan or develop undergraduate curricula may benefit greatly from understanding the male experience. The culture of the nursing profession is crucial for nursing to sustain future changes and expectations while representing the population to which it serves. Let’s change our culture of the “good ole girls’ nursing club” to one of “great nurses from both genders and all ethnicities.”
When the Body Speaks: Living With the Aging Body in Oldest-Old Age
Julie Pusztai, Seattle Pacific University
Although embraced as desirable by most, living into very old age is largely unexplored as a distinct season of life, with increased, varied, and cumulative changes during a unique time of vulnerability and frailty. The purpose of this hermeneutic phenomenology study was to listen to the oldest old and explore this moment of life, this lived experience of growing very old. Thirteen participants, whose ages ranged from 87 to 100, were interviewed three separate times. Eight were female and five were male with eight being Caucasian, three Hispanic, and two African-American. Semistructured interviews included topics of life history, daily habits, and experiences of loss and gain in oldest-old age. Transcriptions of recorded face-to-face interviews, field notes, and observations were used as meaningful text and analyzed using interpretive thematic analysis. Phenomenology provides a fruitful approach to explore and listen to those living the embodied experience of oldest-old age. Paradigms and exemplars are useful tools for conveying and offering an interpretation of what is heard from honest and articulate participants. They speak to the whisper of the aging body, to the pinprick of physical change, and to the shout for care that cannot be ignored. This range of loss accumulates and challenges the spirit. The growing “I cannots” and the changing “I cans” present in a unique individual context and are ever-present as the body disappoints and demands much. As health professionals, we are challenged to hear the unique experience of the individual and care within their context.
Emerging Adult Men and Controlling Behaviors
Katie Querna, University of Washington/School of Social Work
National estimates suggest that 36% of women will experience intimate partner violence (IPV) in their lifetimes. Experiencing IPV is associated with health and mental health impacts, both directly (e.g., musculoskeletal injuries, STIs/HIV, depression), and as a result of chronic stress that accompanies abuse, associated with increased morbidity and mortality. IPV includes physical/sexual aggression, as well as nonphysical controlling behaviors (CBs), a form not well understood. CBs are prevalent (55–95%) among emerging adults (EAs ages 18–30), and are potentially more damaging to well-being than other forms of IPV. Given the prevalence CBs, scant literature, and their probable role in negative proximal and distal health outcomes, it is imperative to better understand their correlates and the context in which they occur to improve health and well-being. Typical CB measures are inadequate for research with EAs. Common measures fail to capture context, were developed with older/married populations, and in the premobile technology era. This project contributes to understanding CBs and the contexts in which they occur by using thematic analysis to analyze interviews with 24 EA men. Results suggest that men do not describe CBs as discrete behaviors (1) or with one, particular “partner,” (2) as they are conceptualized in typical measures. Also, they describe how peers, technology, and partner(s) behavior influence courtship and enable them to “get what they want,” wielding power in subtle ways (3). Results provide implications for IPV conceptualization measurement and violence prevention and health promotion with EA men and their partners in health-care and other institutional settings.
Male Risk Behavior in Homicide-Mortality Contexts in Guadalajara, Mexico: An Observational Study
Igor Ramos Herrera, University of Guadalajara
Miguel González, University of Guadalajara
Antonio Reyna, University of Guadalajara
Juan Robles, University of Guadalajara
In Mexico, a well-known mortality pattern is that men between 15 and 34 years are at great risk of homicide in public places, executed by people who have no link with them. Moreover, women who died from homicide in the same age group are generally murdered inside their homes, and the person responsible is someone they knew. Nevertheless, public policies for preventing and reducing homicide mortality, as a violent fact, have been ineffective. Evidence suggests that interventions focusing on individuals’ spatial–temporal behavior patterns have a greater impact in reducing mortality from homicides than the mere identification of risk factors. On the other side, what drives this kind of patterns in a defined local context is not yet known; therefore, based on an observational design, this work seeks to answer the question: What is the behavior of those males that remain on public spaces that registered the higher rate of homicides in Guadalajara County on year 2013 fifteen male individuals were conveniently selected from places of higher mortality “spatial pattern” for nonparticipant observation, and data collection was made on Saturdays and Sundays between 21:00 p.m. and 01:00 a.m. “temporal pattern.” The analyzed categories and results provide evidence to decision makers on what is the risk behavior that should be modified in order to prevent and reduce homicide mortality. Besides, through this evidence, it would be possible to focus the resources on those individuals, places, and periods of time that with higher risk of mortality.
Beyond the Prompt: Drawing on Spontaneous Narratives as a Source of Data in Exploring the Process of Attachment Security Enhancement in Parent–Youth Relationships
Patti Ranahan, Concordia University
Data collection in qualitative research has typically relied heavily on interviews to capture participants’ perspectives and experiences of a phenomenon under study. Interviews are often semistructured or open-ended, providing occasions for the researcher to ask further questions or prompt the interviewee “to enrich participants” responses. While reflexive efforts may be taken up by the researcher to mitigate the impact of his or her presence as facilitator of the interview, focus group, or as the observer in fieldwork observations, what happens when attempts are made to physically remove the researcher from the interaction or context during data collection? What opportunities are lost or gained when the researcher cannot “prompt” for further exploration or clarification while collecting data? In this Golden Nugget presentation, I discuss the learning experience of using participants’ spontaneous narratives as a source of data in a pilot project that explored the process of attachment security enhancement over a 3-month period in parent–youth relationships. Each parent and youth participant were asked to audio record his or her reflections or ideas about his or her relationship with their parent, or with their youth on a weekly basis while the parent attended an attachment-informed group intervention program entitled the Connect Parent Group. Connect is designed to meet the needs of parents and caregivers of adolescents with severe behavioral challenges and other significant mental health/well-being concerns. Congruent with the intended grounded theory approach, data were collected and analyzed simultaneously using a two-step coding process. Implications for future data collection for the ongoing project will be offered.
You Want Me to do What? Nursing Students’ Experiences With Arts-Based Pedagogy
Kendra L. Rieger, University of Manitoba
Wanda M. Chernomas, University of Manitoba
Diana E. McMillan, University of Manitoba
Francine L. Morin, University of Manitoba
In order to develop professional nurses who can integrate the art and science of nursing practice, educators need various pedagogical approaches. The arts have the potential to engage students, foster meaningful reflection, and develop habits of the mind necessary for excellent health care. Arts-based pedagogy (ABP) is an innovative teaching approach in which an art form is integrated with another subject matter in order to impact student learning. Although there is an emerging body of qualitative research about ABP, no studies were found which explicated the learning process through ABP. The research question for this study was: How do students learn through ABP in undergraduate nursing education? Symbolic interactionism and transformative learning theory were the theoretical perspectives which informed this constructivist grounded theory study. Participants were recruited with purposive and then, theoretical sampling. Thirty-four interviews were conducted with undergraduate nursing students, who had ABP experiences, and eight interviews with their nursing instructors. Data collection included a sociodemographic questionnaire, semistructured interviews, photo/visual elicitation, and field notes. Sociodemographic data were analyzed with descriptive statistics and all other data with constructivist grounded theory procedures. The findings revealed that the arts can be a powerful catalyst for transformative learning. However, there are factors that influence students’ perspective of, and response to, ABP. This grounded theory provides insight into why, how, and when students learn through ABP and can facilitate the effective implementation of ABP. It could also inform the use of arts-based approaches in knowledge translation and other health-care education initiatives.
Mixed Methods Research: The Pursuit of Successful Methodological Pairing
Tracie Risling, University of Saskatchewan
Jill Bally, University of Saskatchewan
Although the emergence of mixed methods research occurred more than 30 years ago, its use in health care has only recently become more prevalent. Mixed methods design is an innovative means for health-care researchers to address the increasingly complex questions they seek to answer. However, concerns persist about the successful pairing of qualitative and quantitative methods. Researchers using mixed methods may experience several challenges from broad issues such as philosophical alignment of methodologies to more focused considerations like managing incongruent sample size requirements. These matters must be addressed as part of the foundational work of study design in order to achieve an effective balance between methodological choices. In this presentation, researchers in the College of Nursing at the University of Saskatchewan will reflect on their own initial journeys in developing and using mixed methods approaches. Recommended supports for selecting parsimonious methodologies to enhance and validate research in health care will be presented. Key literature, highlighting critiques, challenges, and methods for integrating a balance of mixed data will also be reviewed. These practical suggestions will aid those seeking to advance their empirical knowledge in applying mixed methods and provide an opportunity to reflect on the sommelier-like skill required for sound methodological pairing.
Defining Empowerment and Supporting Engagement: Saskatchewan Patients and the E-Health Citizen Health Information Portal
Tracie Risling, University of Saskatchewan
Megan Jenkins, University of Saskatchewan
Despite increasing engagement in the pursuit and promotion of patient-centered care, questions remain about how to accomplish the meaningful systematic changes many individuals and health-care organizations are working to achieve. Recently, some Saskatchewan residents had an opportunity to engage with their health-care data through an e-Health Saskatchewan pilot project and the Citizen Health Information Portal (CHIP). The vision of e-Health Saskatchewan, Empowering Patients, Enabling Care, delivers a powerful message to provincial residents about their importance in the delivery of e-Health solutions. A strong commitment to patient empowerment is a crucial foundation in leading these kinds of transformations; however, the concept of patient empowerment within the e-Health setting requires further explanation. Although “power” in health care has historically been thought of as being wielded by health-care providers, by better understanding how Saskatchewan residents currently define and reclaim this key element in their health-care journeys, there is opportunity to further tailor e-Health solutions to maximize engagement and positive health outcomes. This presentation includes results from a sequential exploratory mixed methods study on patient empowerment and CHIP in Saskatchewan. Specifically, the results of an exploration of empowerment as defined by Saskatchewan patients engaged in the use of CHIP will be reviewed. Qualitative data from study participants were analyzed using interpretive description and supported the development of a pilot quantitative survey tool to further study empowerment and the use of e-Health technologies.
Understanding Transitions and Adaptations of Rural Couples Living With Parkinson’s Disease: A Constructivist Grounded Theory Study
Tanis Robinson, University of Calgary
People with Parkinson’s disease (PD) and their spousal caregivers living in rural and remote areas have unique experiences when accessing basic and specialized health-care services. Patterns of health-care usage indicate that people with PD and their spousal caregivers living in rural and remote areas may have compromised health outcomes. There are substantial gaps in the current knowledge and body of literature about living in rural and remote areas with PD, the couple experience, and how couples living in these areas adapt and transition to living with PD. Additionally, with the Canada’s increase in population aged 60 years and older, the average age of diagnosis for PD, health-care providers may be unprepared or unable to provide the specialized kind of care necessary for the rural and remote Parkinson’s population. Constructivist grounded theory methods and methodology are being used to provide the foundations for this study and to explore the connections, interactions, and tacit meanings of couples living with PD in rural and remote areas. Specific aims of this study are to (1) to describe rural and remote couples’ PD experience, (2) develop a reflexive understanding of the adaptive processes of couples living with PD in rural and remote areas to maintain health, and (3) develop a substantive theory of rural and remote couples living with PD and adaptations used to maintain their health and wellness. Initial research findings from this study will be shared.
Using Visual Data in Research
Kerstin Stieber Roger, University of Manitoba
The use of visual data is increasing in the pursuit of collecting qualitative data. While more literature now exists on how to integrate visual data into research, little is known about it in the daily experience of researchers on campuses. This includes our funding bodies, our ethics committees, our students who are learning about conducting research, and a diverse range of colleagues who might work together on research projects. Our daily world outside of academe is significantly immersed in visual information at every turn, and yet, somehow, the academe remains slow or silent in moving forward with a more complex and in-depth understanding of acknowledging the real place of visual data in our research worlds. This presentation will reflect on three qualitative studies that were conducted using photography in the context of photovoice, and I will problematize key issues that arose in each study.
Remapping Mental Health: From Single Storylines to Topographies of Tension
Karen H. Ross, University of Calgary
The definition of “mental health” can be debated endlessly among researchers and practitioners, but the final word does not rest with us. Mental health is continually coconstructed and renegotiated in public spheres—in conversations and declarations among patients/clients, friends, family, colleagues, politicians, and administrators; in films, newspapers, self-help books, and online comments sections. The ever-shifting meanings of mental health are multifaceted, contested, and consequential. In this presentation, I map the ways in which mental health is constructed in a range of disparate texts: university policies, popular websites (e.g., BuzzFeed and Huffington Post), user comments on these websites, social media forums (Tumblr/Reddit), awareness campaigns, and smartphone app descriptions. Using Clarke’s (2005) situational analysis, I articulate discursive positions within these documents and relationships between said positions and explore how diverse stakeholder interests have influenced the contemporary situation of what we call “mental health.” I explore how these understandings of mental health invite people into particular actions and self-understandings (akin to Parsons’s classic formulation of the “sick role”), drawing upon the Foucauldian notion of governmentality. Mental health has received ample attention in recent years, but messages have arguably (over)simplified along dominant story lines. I have sought to critically examine narrowed assumptions; depict the complexity of, and claims upon, mental health as a social problem; and foster discussion of the power of popular media to shape public understandings of mental health. Exploring influential documents and their tangled relationships to “correct” expert knowledge can inform more responsive therapeutic conversations with patients/clients.
The Discursive Production of Risk: Through the Lens of Ableism/Disableism
Kathy Rush, University of British Columbia–Okanagan
Rachelle Hole, University of British Columbia–Okanagan
This paper offers critical discourse analysis as a novel methodological approach for understanding the risk practices of older adults in the critical transition from hospital to home. The analysis derives from a study of eight older adults who were hospitalized with cardiac conditions and six partners to uncover their understandings and the meaning they gave to risk in the immediate posthospitalization period. They participated in interviews within 2 to 3 weeks of discharge. Older adults often dismissed and denied risk, prompting our interest in understanding the discursive production of risk. Discourses produced older adults’ responses to risk as disability, an abnormal and diminished state of being human. Participants’ constructions of risk were shaped by dominant discourses of ableism; produced compulsory ableism that created internal and external tensions and was performed through normalizing risk, business as usual, and passing; and created a new liminal identity in which older adults were neither abled nor disabled. At the same time that society expects older adults to manage their risks through avoidance strategies, society creates discourses of ableism that older adults feel compelled to take up. This presentation will illustrate the value of discourse analysis in challenging accepted ways of acting and thinking about risk and opening up opportunities for producing alternative representations of risk. Such knowledge provides a basis for reframing traditional ideas of risk and reimagining hospital to home care for older adults.
Patient and Provider Perspectives on Telehealth: Integrating the Differences
Kathy L. Rush, University of British Columbia
Linda Hatt, University of British Columbia
Nicole Gorman, Interior Health
Louann Janicki, Interior Health
Petr Polasek, Cardiology Associates Kelowna
Susan Holtzman, University of British Columbia
Telehealth has brought health care close to home for older adults with specialized health needs in rural communities. Telehealth is not a generalizable one-size-fits-all approach and must be geared to the defined needs and characteristics of specialized populations. Older adults with atrial fibrillation (AF), a heartbeat irregularity, have pervasive unmet physical, emotional, social, and learning needs, thus making telehealth technology a viable option. In any planning of telehealth delivery, obtaining the perspectives of the key stakeholders is a necessary first step to ensure the uptake of telehealth as an innovative model of health care. This presentation describes a qualitative descriptive study done in conjunction with a local health authority. The study was designed to gain understanding of patient and health providers’ perspectives on the potential role of telehealth in supporting patients with AF. It included eight rural patients with AF and five rural providers who participated in semistructured telephone interviews. Three themes emerged from their combined perspectives: (i) receptiveness to telehealth, (ii) needs telehealth can address, and (iii) telehealth logistics/components. Despite commonalities, there were differences between patient and provider perspectives about how telehealth could best meet the needs of older adults with AF. This presentation highlights the differences and demonstrates how qualitative researchers work with differing perspectives to best represent the findings. Both perspectives need to be understood in order to design a successful telehealth program.
Students’ Knowledge, Attitudes, and Beliefs about Interprofessional Practice: Catching a Glimpse of Professional Identity in the Context of Peer Learning
Heather Russell, Mount Royal University
Jennifer Stefura, SAIT Polytechnic
Meredith Patey, Southern Alberta Institute of Technology
Margot Underwood, Mount Royal University
Interprofessional education (IPE) is increasingly acknowledged as an essential element for patient safety in health care and as a standard for health-care education by accrediting bodies and professional organizations. Research regarding IPE has significantly evolved over the past decade; however, there remains a lack of clarity as to when and how IPE should occur within an education program and whether IPE ultimately impacts professionals’ practice. This mixed methods study examined the influence of a collaborative nursing lab on participating bachelor of nursing and respiratory therapy students’ knowledge, attitudes, and beliefs about IPE. A Readiness for Interprofessional Learning Scale (RIPLS) questionnaire was administered to both groups of students before and after participating in this lab. RIPLS subscale scores for teamwork and collaboration and positive professional identity increased significantly for nursing students post lab. This study also examined the accomplishments of this collaborative lab for both sets of students, in particular, the construction of their professional identities. An analytic interpretive approach to discourse analysis was used to analyze data gathered through individual interviews and focus groups. The nonevaluative student-to-student learning that occurred in this lab contributed to an atmosphere less constrained by mechanisms of power inherent in instructor-led labs or clinical experiences. Students’ narratives revealed that interprofessional learning, building of relationships, and construction of their professional identity were supported in this nonhierarchical simulated clinical encounter. Understandings generated from this study could support the thoughtful integration of IPE into health professionals’ curricula and support the development of their practice.
Multiple Accountability Disorder: Developing an Understanding Through India’s Largest Social Health Insurance Program
Deepika Saluja, Indian Institute of Management Ahmedabad
Ankur Sarin, Indian Institute of Management Ahmedabad
Government-sponsored health insurance is seen as a useful instrument in improving health status of developing countries (Guiteras, 2012). Target beneficiaries need to be enrolled in the program to make these instruments work, making the enrollment process critical to the program’s success. This paper attempts to observe the enrollment process of the largest social health insurance program (Rashtriya Swasthya Bima Yojana [RSBY]) operational in India. Resembling Medicaid in its design, RSBY is jointly funded by state and central government and managed by states along with a network of public/private providers (insurers, hospitals, TPAs). These actors/agents have their own organizational hierarchy, interacting with each other in a network structure with intertwined lines of control and convoluted accountabilities (Frink et al., 2008). This makes an actor accountable to multiple other actors, more so at different levels, making it difficult for them to stay focused on important aspects of service delivery (Mulgan, 2008). This has been referred to as “multiple accountability disorder” by Koppell (2005), which potentially dilutes the efficiency of actors, thus reflecting in poor service quality. Through this paper, we aim to understand the implications of multiplicity in contracting out health-care services to nonstate actors (mostly private) in RSBY on its implementation effectiveness. Using Straussian grounded theory (Creswell, 2007), we examined the enrollment process and interviewed beneficiaries to understand their experiences and knowledge levels about the scheme’s features/benefits. Our results raise questions about the feasibility of contracting out at multiple levels in being able to substitute for a weak state’s capacity and creating more accountable public health institutions.
Whiteness and “Healthy Body Weight”: Analyzing Discourses of Privilege and Oppression in Social Media
Monica Sesma-Vazquez, University of Calgary
Shelly Russell-Mayhew, University of Calgary
Emily Williams, University of Calgary
Oppression dynamics and white supremacy discourses about the body are usually invisible. However, they influence and determine specific body weights, images, and shapes. White dominance has power and privilege to dictate “healthy behaviors,” “healthy weight,” and body expectations. Social media contributes to weight bias, standardized bodies, and other mechanisms of inequality without considering privileges based on race, gender, religion, education, and economical and social status. The objective of this presentation is to discuss and reflect on the lack of awareness related to whiteness, privilege, and dominance in health perspectives about the body, particularly on human weight. We analyzed a variety of data from Twitter, Facebook, blogs, Internet, movies, and other sources of social media to illustrate oppressive mechanisms and the way our bodies are being socialized to make us aspire, desire, and fight to gain the same white and Western privileges. We will finalize with our thoughts on the repercussions of these normative and racialized human bodies and other social justice implications for mental health practitioners.
Team-Based Qualitative Analysis: A Coconstructed, Multicoder Approach
Joanie Sims Gould, University of British Columbia
Thea Franke, University of British Columbia
Catherine Tong, University of British Columbia
Sociobehavioral phenomena are often complex and require an approach to their understanding that requires an interdisciplinary and multisite team of researchers. In this presentation, we systematically highlight the steps we undertake in our sociobehavioral research to collect, organize, and analyze qualitative data as an interdisciplinary team. Using three examples from our research that examines the relationships between older adult’s health, mobility, and social connectedness and their neighbourhood social and built environments, we offer a framework for team-based analysis that includes the use of a coconstructed coding framework and the use of multiple interdisciplinary coders to ensure rigour. We highlight our process and time lines. In conclusion, we describe several key challenges and resolutions related to time and efficiency of team-based analysis.
Practical Nursing Students’ Lived Experience of Returning to School to Earn a Bachelor of Nursing Degree: Implications for Program Delivery
Mary Smith, Brandon University
Kathryn Chachula, Brandon University
Kathryn Hyndman, Brandon University
In the Canadian Nurses’ Association (CNA) Towards 2020 Vision for Nursing framework, the CNA has advocated for a streamlined approach for nursing education to meet leadership needs within the nursing profession. One solution to this approach is offering college-prepared practical nurses the opportunity to transition into undergraduate bachelor of nursing (BN) programs to increase the number of registered nurses practicing in Canada. The lived experience of transition among practical nurses who pursue BN education is not commonly studied in the Canadian landscape. Using Max van Manen’s phenomenological approach with semistructured questions, practical nurses who bridged into the BN program at Brandon University in Manitoba were individually interviewed to garner their lived experience of transition from practicing nurse to BN student. The findings of this study revealed five themes: (1) seeking advancement, (2) stepping back into the student role, (3) juggling work, school, and family, (4) struggling to be understood, and (5) feeling changed. This qualitative research revealed the significance of the relational dynamics of practicing nurses returning to the student role and provided an evidence-based approach to curriculum reform.
Do Advanced Care Planning/Goals of Care Designation Facilitate or Hinder Clinical Making Decisions to Transfer Long-Term Care Residents to the Emergency Department?
Jude Spiers, University of Alberta
R. El-Bialy, University of Alberta
G. Cummings, University of Alberta
K. Tate, University of Alberta
The Alberta Health Services Advanced Care Planning/Goals of Care Designations (ACP/GCD) policy was launched in 2008. The Examining Aged Care Transitions (EXACT) project is a two-phase, mixed methods study that explores decision-making around the transitions of residents in long-term care (LTC) facilities to the emergency department (ED). The purpose of EXACT is to identify factors that influence decisions to transfer LTC residents to the ED in ambiguous situations and to identify modifiable attributes of avoidable transitions: GCD was identified as a key influencing factor. Phase 1 of EXACT employed focused ethnographic methods and experiential individual and focus group interviews with 81 participants including registered nurses, licensed practical nurses, health-care aides, emergency medical services (EMS) personnel, and family members of LTC residents. In Phase 2, we administered an online survey to staff and physicians in 16 LTC facilities and one ED, in addition to regional EMS personnel. We present a conceptual definition of avoidable transitions created in Phase 1 and validated in Phase 2. We focus on differing perspectives of the role of ACP/GCD in decisions to transfer residents from LTC to ED and the extent to which GCD facilitates or hinders the decision to transfer residents that otherwise might have been avoided. The implications of these findings lead to recommendations for changes to policies and decision-making regarding LTC-ED transitions. Acknowledgement: This project is funded by Covenant Health and their Network of Excellence in Seniors’ Health and Wellness.
Patients’ Impressions of Nurse Practitioner Care
Sarah Stahlke, University of Alberta
Edith Pituskin, University of Alberta
Krista Rawson, CancerControl Alberta
In the contemporary health-care system, concerns about sustainability and effectiveness have generated interest in addressing access issues, providing wellness-oriented early intervention, and using human resources more effectively. In cancer care, increasing acuity and rising patient volumes highlight the need for innovative care delivery. The nurse practitioner (NP) role has been in place in Canada for several decades and is seen as a way of achieving such changes while maintaining quality of care. The role has been established in cancer care, although it continues to suffer from role ambiguity and lack of acceptance within the traditional system. Nevertheless, NP care has been shown to result in positive patient outcomes. There is room, however, to further explore the effectiveness and acceptability of NP-provided therapy from the patient perspective. Thus, the aim of this study was to describe and interpret breast cancer patients’ perspectives of receiving NP-delivered care during anticancer treatment. Breast cancer patients receiving active treatment from an NP were invited to participate in this study. Utilizing the approach of interpretive description, saturation of themes and patterns were achieved after nine participants were interviewed. Participants consistently reported confidence in NP active care, recognizing that the NP was part of a larger multidisciplinary team providing systemic therapy. Appreciation for consistency of the NP care provider was voiced and patients valued the unique opportunity they had to build and enjoy the rapport and trust that accompanies NP care. Early breast cancer patients felt their needs were met by the NP provider and recommended more NPs be added to the cancer-care workforce, given increasing patient numbers, increasing complexity, and the need to bridge patients from active cancer care to community surveillance. These findings show that NP care is highly regarded and deemed effective by the patients receiving this care.
Reimagining Healthcare: Egan Mentoring and the Changed Medical Mind-Set
Alison Steven, Northumbria University
Nancy Redfern, Newcastle Upon Tyne NHS Foundation Trust UK
This presentation will explore a crosscutting theme “changed medical mind-set,” emerging from a series of studies into mentoring for U.K. doctors undertaken by the author over more than a decade. Whilst there are many types of mentoring, the approach used in the initiatives studied is based upon the Egan skilled helper model and does not rest on notions of a senior-protégé relationship. Although not the focus of these studies, participants have consistently and spontaneously reported changes in their way of thinking—some expressing this as life changing and profound; some as a moment of pause and reflection, a relearning of forgotten skills; and others as prompting reflection on a medical culture (and discourse) which perpetuates a certain way of thinking and being. The studies included qualitative and mixed methods explorations and evaluations of the perceived benefits of involvement in mentoring (2004), mentoring schemes (2008), mentor development initiatives and courses (2015), and an ongoing British Medical Association–funded study into the relationships between mentoring activities and Doctors’ Health and Wellbeing. The studies have drawn on social constructionism (Gergen, 1999) and been based in the view that, like education and learning, mentoring is a set of complex social processes which is individual, socially negotiated, and context bound. The methodologies employed draw on grounded theory, illuminative evaluation, and latterly elements of realistic evaluation. Thus, it seems engagement in Egan style mentoring activities (learning about mentoring, doing mentoring, using mentoring skills) has an impact on medical mind-sets and potentially on medical culture.
Gender-Based Violence Through the Eyes of Community Health Volunteers in Remote Zambia
Paisly Symenuk, University of Alberta
Jude Spiers, University of Alberta
Sylvia Barton, University of Alberta
Gender-based violence (GBV) constitutes human rights violations for women and families and is associated with wide-ranging negative health and social sequelae. Thus, it must be addressed through coordinated action at both national and community levels. In Zambia, an estimated 43% of women have experienced physical violence since age 15. In this presentation, we report the process and results of a qualitative-focused ethnographic study in which we explored the roles and perceptions of rural Zambian community health volunteers in relation to GBV. Principles of appreciative inquiry were employed to ensure cross-cultural sensitivity and respect when working with the 19 community worker-participants recruited from the Safe Motherhood Action Group. Experiential data were collected via semistructured interviews at four remote health centers and analyzed via inductive thematic analysis by the research team in Canada and Zambia. Rigor was maintained using verification strategies as well as attention to contextuality, awareness of identity and power differentials, disclosure, and empowerment. Three key findings were identified: reporting structures, gender roles, and the roles of community health volunteers. These findings, shared with community stakeholders, will form the basis of community-based intervention strategies including pictorial approaches. These findings contribute to the development of culturally appropriate understandings of GBV in remote Zambian communities and contextually congruent response strategies.
Case Study About Cognitive and Behavior Features of “High-Stopper Nurses”: Suggestions for Medical Safety Education
Tomoko Tanaka, Okayama University
Yoshimi Hyodo, Okayama University
Hiroe Yamanaka, Kyoto University Hospital
Purpose: According to the Swiss cheese model, medical accident occurs in case the arrow of error penetrates plural halls of the wall. Process of accident could be stopped by putting up a stopper wall. Nurses who achieved the function as stopper of the accident effectively were named as high-stopper nurses. Their characteristics were investigated. Method: Ten nurses who worked in Hospital A were recommended by an administrator as nurses who could effectively prevent medical accidents. Semistructured interviews were conducted for about 1 hour per person, after we received ethics approval for this study. Results and Discussion: Nurse B said that she considers effective work steps and always simulates the situation in her mind. Nurse C said that she tried to think logically about the phenomena and connect knowledge in the textbook to the real situation. The nurses’ behavioral features were confirmation action and verbalization beyond authority incline. Nurses’ cognitive features were logical intention, prediction, and overlook of the whole situation. With respect to emotional aspects, nurses were sensitive to incongruity and motivated to engage in confirmation due to anxiety about errors. They dwelled on the past and said that they were not “high stoppers” from the beginning of their careers. They also talked about whether or not they were able to differentiate beginner nurses as high-stoppers in future. The results suggested an effect of job experience and possibility of medical safety education for training to become high-stoppers.
Debriefing Reimagining Reflective Practice Through the Patient’s Lens. An Innovative Data Collection Technique
Karyn Taplay, Brock University
Elizabeth Horsley, Department of Nursing, Brock University
Sheila O’Keefe-McCarthy, Department of Nursing, Brock University
Kayleigh Tyrer, Department of Nursing, Brock University
A single case study explored senior student nurses’ reflective practice from the patient’s perspective which employed two innovative, alternative data sources: the GoPro camera and one-on-one debriefing. The GoPro camera was attached to the forehead of a high-fidelity patient simulator. This recorded the nursing care provided from the perspective of the patient. Participants watched the video and were asked to reflect on their nursing care. One-on-one debriefing, instead of traditional interviewing, was used as a data collection strategy. Debriefing is a practice that is closely linked with simulation-based pedagogy. It is the practice of guiding someone through an examination of, or a reflection on, their practice. It involves probing and asking questions about actions, exploring the thinking behind the actions, and the resultant feelings experienced. Debriefing is different from interviewing because it focuses on specific actions or care delivered with the purpose to enhance, improve, or impact patient care. While there are both benefits and challenges related to these data collection strategies, these innovative approaches provided an in-depth cutting-edge method of meaningful reflective practice that has historically been through self-reflection or peer reflection. This unique patient-centered perspective integrated into reflective practice has the potential to revolutionize the concept of patient-centered care. While this strategy cannot be used on real patients, it can be integrated into the training of students and nurses and, in turn, transform health-care practices.
Insights Into Person-Centered Care: A Secondary Analysis
Gareth Terry, Auckland University of Technology
Nicola Kayes, Auckland University of Technology
The notion of person (or patient) centeredness within rehabilitation—and in health practice more generally—is one that has been gaining in use and application for a number of years. Although it is implicitly understood to be an important, positive movement within health care, person-centered care (PCC) is also described as suffering from a lack of definitional clarity. Further, many descriptions of PCC in policy and scholarly work lack patient accounts of positive and negative care at the center of their operationalizing. Drawing from 3 preexisting qualitative data sets, consisting of interview and focus group data, a secondary analysis was performed using Braun and Clarke’s version of thematic analysis. We constructed 4 themes from the data: (1) a difficult and unstable new reality—a description of the context of rehabilitative care from the patient perspective, (2) the need for a relational orientation toward care, (3) the need for a continuum of trust, and (4) a shift from individualized notions of efficacy or independence to the concept of supported efficacy. These four themes were used to describe an overarching relational approach to rehabilitation, which patients identified as providing the most value in their experience of care. Such accounts may serve to further enhance our understandings of PCC.
Perhaps a Beginning, Perhaps No Ending: Uncertain Interpretations of Cancer Narratives
Ulrich Teucher, University of Saskatchewan
Commonly, qualitative analyses of illness narratives have been involving the search for new underlying forms of order and meaning, with the underlying promise of increasing knowledge and understanding. These semidevelopmental perceptions of human knowledge have attracted various critics. What can be said to be common among these criticisms are beliefs in the importance and even necessity of experiences of crises, of disorder, of the unknown, of uncertainty, in rather open-ended struggles of meaning, subject positions, and human actions, which may well involve experiences of knowing less than more. Instead, a “Culture of Redemption” (Bersani, 2000) holds sway over our narrative industry (publishers, editors, reviewers, critics), audience reading predilections, and assumed narrative therapeutics, severely limiting the possibility that cancer patients may differentially negotiate their existentially embodied struggles of (re)defining or relinquishing subject positions; deciding on or giving up on actions; or just somehow muddling through; moralizing, not moralizing, or leaving morals undecided; and then publishing the experiential disorder of lives with cancer without attempts at a narrative sense of endings (Kermode, 1967). My presentation explores various English and German cancer autobiographies as well as cancer patient interviews from my own research that exemplify these struggles. Introducing notions of uncertainty more centrally into interpretation, and questioning developmental aspirations in our meaning-making endeavors, could go a long way toward understanding some of the confused lives of cancer patients, all in order to provide more differentiated personal care in our health-care system.
Examining the Lived Experience of Holistic Nurses Who Integrate Complementary and Alternative Modalities of Care in Nursing Practice
Nel Thomas, Adventist University
Nursing theorists have throughout times conceptually embraced the multifaceted nature of human beings, asserting that nursing should respond to the totality of patient needs. However, current nursing practice has become dominated by conventional medicine and its limitations in patient care, resulting in patient dissatisfaction with treatment and care and increasing patient demand for Complementary and Alternative Modalities of Care (CAMC). Several recent studies revealed that 51–67% of nurses lack necessary knowledge and understanding of CAMC to guide patients and are uncertain of their role in CAMC. Few studies examine the experience of nurses who are knowledgeable in CAMC and integrate CAMC in nursing practice. This qualitative phenomenological study examined the lived experience of nurses who integrate CAMC to meet the holistic needs of patients. Ten holistic nurses working in a variety of nursing specialties, in seven different states in the United States, and practicing various modalities of care contributed to the study through individual semistructured interviews. The data were analyzed through thematic analysis and revealed four themes: transforming, revitalizing, balancing, and empowering, with the subthemes of awakening, education, self-care, and job satisfaction, respectively. Results connected nurses’ integration of CAMC in nursing care with positive impact on self-care, patient-centered care, and transformation of nursing practice. The findings generated from this study provide a model for transforming nurses and the nursing environment of care to meet the holistic needs of patients.
Translation of Qualitative Findings for Anticipatory Guidance: Regret Sex, a Poetic Transcription
Sharyl Toscano, University of Alaska Anchorage
Regret sex is a phenomenon beyond feeling pressured to engage in sexual activity. The concept of regret sex has been linked to high-risk youth behaviors including drug and alcohol use as well as uncertainty and potential risk of harm in adolescent dating relationships. In the current literature, women report both nonalcohol-related and alcohol-related regret sex more often and more intensely than men. The use of translation allows health-care providers to move past screening and identification toward a science of understanding and guidance for youth and young adults. The researcher interviewed 10 unmarried economically and racially diverse women between the ages of 19 and 25 for the purpose of exploring the role regret sex plays in the development and/or lack of development of healthy romantic relationships. Using qualitative descriptive analysis and the poetic transcription method, the researcher will present a representation or “third voice” that incorporates the interviewee(s) and the researcher. Words, emotions, and the rhythm of speaking are interconnected in this process where the end result, poetic transcription, is a focus on the essential story. The resulting poem provides insight into the connections between consent, consequence, and regret as young women explore role and identity in sexual relationships.
Developing a Framework for Creating Workplace-Specific Clinical Reasoning Tools
Merrill Turpin, The University of Queensland
Jodie Copley, The University of Queensland
Clinical reasoning and decision-making are central to health professional practice. Using tools to support clinical reasoning is a common strategy for improving practice. However, because reasoning and making decisions about practice is deeply contextualized, the generalizability of clinical reasoning tools across different contexts is limited. Consequently, health professionals often develop their own tools specific to their own workplaces and practice areas. Using action research (AR), we conducted a three-stage process that aimed to take a systematic approach to developing tools to support clinical reasoning. In the first two AR cycles, we explored occupational therapists’ current use of and perceived need for clinical reasoning tools. These two AR cycles helped us to better understand the highly context-specific nature of clinical reasoning in practice and emphasized that, for clinical reasoning tools to be useful, they needed to be tailored to the particular service in which they were to be used. We then commenced by working with occupational therapists at one organization to develop a clinical reasoning tool for their use. However, through this process, we found that we had developed a framework that had potential use in guiding the development of tailored clinical reasoning tools. Subsequently, we used the framework with a second organization to guide the process of identifying the issues that were important for practice in that workplace in order to explore the utility of the framework in guiding the development of tailored clinical reasoning tools. This paper discusses the development of this framework.
Supporting New Graduate Occupational Therapists
Merrill Turpin, The University of Queensland
Cate Fitzgerald, Queensland Health
Sue Laracy, Royal Brisbane & Women’s Hospital
The transition from student to health professional is complex and difficult and presents major challenges. While students predominantly are engaged in developing their knowledge base and professional skills, health professionals are responsible for delivering competent services and undertaking the roles expected of them by their professional community of practice. It is well accepted that support is crucial for new graduates during this difficult transition. This research explored the use at a major metropolitan hospital of a clinical and professional education framework to support new graduate occupational therapists in their transition to practice. Each year, this hospital offers three occupational therapy positions to new graduates. In these positions, new graduates work in a caseload that gives them access to a broad range of hospital patients, are provided with structured supervision and peer-learning opportunities, and engage in a multidisciplinary clinical learning program. Semistructured interviews were conducted with occupational therapists who had held these new graduate positions and those involved with implementing the framework (such as supervisors and clinical education support officers). Research participants were asked about their perceptions of actions or factors that supported new graduates during this transition, how a workplace could support this transition in respect to clinical and professional needs and workplace learning, and specifically how the occupational therapy department supported these needs. They were asked for their perspectives on any gaps in the process used and recommendations for further support that is needed. Results will be reported.
A Pediatric Phenomenological Study of the Ventricular Assist Device in the Life of the Child
Michael van Manen, University of Alberta
The use of some medical therapies in children is fraught with developmental considerations, psychosocial consequences, and ethical sensitivities. A critical case is the ventricular assist device (VAD), a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, the device can be used as a temporary solution for poor heart function, a bridge to transplantation, or as a final destination therapy for nontransplant candidates. While the mechanical–technical operation of the VAD is well understood, the clinical–technical aspects of young people living with this device are largely unexplored. Drawing on interviews of school-age children, the aim of this phenomenological study was to explore how a VAD may structure or condition a child’s meaningful experience of their world outside the hospital. Peripherally attached to the body, the driveline of an implanted VAD extrudes through the skin to connect the controller power supply. The materiality of the device may be interruptive, restrictive, and disturbing to the psychophysical being and self-identity of the child as a child. And while a child equipped with a VAD is not necessarily conspicuous amongst other children, the child may experience the device as an exposing presence, while living with the worry of a caregiver who takes on the role not simply of parent but of watchful health professional. A phenomenological understanding of the VAD should assist parents and caregiving health professionals in knowing how to deal with specific issues arising in the life of the VAD child.
Experiencing and Articulating Situational Loneliness: A Qualitative Study With Three Case Communities in the UK
Konstantina Vasileiou, University of Bath
Julie Barnett, University of Bath
Manuela Barreto, University of Exeter
Mark Atkinson, University of Exeter
John Vines, Newcastle University
Mike Wilson, Loughborough University
Shaun Lawson, Loughborough University
The importance of social relationships for health and well-being is increasingly documented in academic literature (Cohen, 2004; Haslam, Jetten, Postmes, & Haslam, 2009; House, Umberson, & Landis, 1988). Research demonstrates that individuals with adequate social relationships have a 50% increased likelihood of survival compared to people with poor social relationships (Holt-Lunstad, Smith, & Layton, 2010), whilst people who are objectively or subjectively isolated have an approximately 30% increased likelihood of death (Holt-Lunstad, Smith, Baker, Harris, & Stephenson, 2015). In the light of this evidence, loneliness and unwanted social isolation are increasingly recognized as a major public health concern. Although the focus of research has primarily been on chronic forms of loneliness linked to the old age, shifts of modern life and work patterns necessitate a closer examination of experiences of situational loneliness arising from life transitions and important changes in life situations across the life span. Employing semistructured qualitative interviews, the present research sought to investigate experiences of loneliness in three case communities who are vulnerable to situational loneliness. Interviews were conducted with 16 informal carers, 15 University students who had moved away from their home country or home town to pursue their studies, and 7 women during the early months of first-time motherhood. The research shows that experiences of loneliness are linked to losses and deprivations of, or estrangement from, psychologically important relations as well as situations of being alone in a state of vulnerability whereby help and support from others are needed but not readily accessible. Limited opportunities for social interactions and social encounters characterized by distancing hindered the development and maintenance of caring and trustful relationships and threatened a sense of belonging. These conditions also provided fertile ground for the experience of loneliness. Implications for policy, the practices of health-care professionals, and wider society are discussed.
Phronesis: Practical Wisdom the Role of Professional Practice Knowledge in the Clinical Reasoning of Expert Bobath Instructors
Julie Vaughan-Graham, University of Toronto
Cheryl Cott, University of Toronto
Rationale: Clinical reasoning is an essential aspect of clinical practice, central to professional accountability and autonomy, however is largely ignored in the current rehabilitation sciences evidence base. Literature related to clinical reasoning and clinical expertise has evolved concurrently, although rehabilitation reasoning frameworks remain relatively generic. The purpose of this study was to explicate the clinical reasoning process of expert therapists of a widely used neurorehabilitation approach, the Bobath concept. Method: A qualitative interpretive description approach consisting of stimulated recall using video-recorded treatment sessions and in-depth interviews. Purposive sampling was used to voluntarily recruit members of the International Bobath Instructors Training Association (IBITA) who are recognized experts in Bobath clinical practice. Interview transcripts were transcribed verbatim and provided the raw data. Data analysis was progressive, iterative, and inductive. Results: Twenty-two IBITA members from seven different countries volunteered to participate. The participants had a range of clinical experience from 12 to 40 years and ranged in instructor experience from 1 to 35 years. Three themes developed from the data: (a) a Bobath clinical framework, (b) person centered, and (c) a Bobath reasoning approach, and highlighted the role of practical wisdom, phronesis in the clinical reasoning process. In particular, the role of visuospatial kinesthetic perception, an element of technical expertise, was illuminated as an integral aspect of clinical reasoning process in this expert group. Conclusion: This study provides an interpretive understanding of the clinical reasoning process used by expert IBITA instructors illustrating an enactive embodied view of clinical reasoning, specifically the role of phronesis, requiring further investigation in nonexpert Bobath therapists, as well as in novice and experienced therapists in other specialty areas.
Women’s Perceptions of the Hypertensive Disorders of Pregnancy in Nigeria, Mozambique, Pakistan, and India: A Qualitative Evidence Synthesis of Primary Data From the Community-Level Interventions for Pre-Eclampsia (CLIP) Feasibility Study
Marianne Vidler, University of British Columbia
Dane De Silva, University of British Columbia
Shafik Dharamsi, University of British Columbia
Laura Magee, St George’s University London
Khatia Munguambe, Centro de Investiga’o em Sa’de da Manhi’a
Perceptions of health and illness can impact health-seeking behavior and outcomes and are culturally bound. Little is known regarding these women’s perceptions, including knowledge, attitudes, and practice of pregnancy complications, particularly the hypertensive disorders of pregnancy (HDPs). Following a qualitative evidence synthesis, we sought to determine women’s perceptions of the HDPs utilizing data from the Community-Level Interventions for Preeclampsia (CLIP) study. Focus groups of pregnant woman, women of reproductive age, and/or new mothers from four countries were analyzed: 7 from India, 19 from Pakistan, 4 from Mozambique, and 8 from Nigeria. NVivo software was used to facilitate data analysis, and an independent reviewer participated in the analysis of a sample of transcripts. A thematic synthesis approach was utilized. Thirteen first-order categories were coded from the primary data. These categories were then regrouped into five descriptive themes from which four analytic themes were then generated, providing interpretations of the data: (1) the influence of personal experiences in understanding the HDPs, (2) interpretations of the HDPs related to natural environment, (3) interpretations of the HDPs related to socioeconomic determinants, and (4) interpretations of the HDPs related to myths and the supernatural. Culture has a substantial influence on the understanding of HDPs, and misconceptions frequently originate from traditional beliefs and myths related to health and disease. Knowledge of the HDPs is limited among women of reproductive age in these communities but may be effectively addressed by utilizing personal experiences for learning.
The Experience of Family Caregivers in Care Transitions After Stroke: Interpretive Case Study
Vanessa S. C. Vila, Pontifical Catholic University of Goias
Jamile C. Rodrigues, Pontifical Catholic University of Goias
Livia M. Mendonça, Pontifical Catholic University of Goias
Care transitions after the stroke is recognized as a complex period that has been overlooked. During this period, health-care interventions should encourage continuity of care, adaptation, and preparation of patients and family caregivers. This interpretative case study aimed to understand the experience of care transitions after hospital discharge, with a view to 12 family caregivers of people who survived the stroke. Data were collected through interviews, and individual, face-to-face in-depth and thematic interpretive analysis was performed. The experience in care transitions was related to lack of continuity of care and deficits in communication between professionals and caregivers. These experiences denote deficits in the implementation of discharge planning, which brings harm to the patient and family in coping process of this social reality. Family caregivers mentioned feelings related to fear, worry, and uncertainty facing the perception of lack of preparation for care at home. The results indicate the existence of multiple and complex factors that influence the transition of care management after stroke. Note that the model of care health is strongly focused on acute disease stage, making it difficult to discharge planning and the establishment of effective communication between the different health-care levels to ensure continuity of health care, the actual process of rehabilitation, and social reintegration and community.
Diabetes Type 2 in the Context of Migration: Sweet or Sour Contribution of Advanced Nursing Practice to an Intersectoral Partnership
Bilkis Vissandjée, Université de Montréal
Fayeza Jahan, Université de Montréal
Kelley Kilpatrick, Université de Montréal
The purpose of this presentation is to highlight the contribution of advanced nursing practice in cross-sector partnerships to prevent and manage Type 2 diabetes (T2DM) among migrant population. According to the International Diabetes Federation (2013), over 382 million women and men worldwide were living with T2DM, and this number is expected to increase to 592 million by 2035. In Canada, between 2008 and 2009, 6.4% of women and 7.2% men were estimated to be affected, with nearly one additional million who live the experience of T2DM without even knowing it. There is ample evidence that women and men living an immigration experience are particularly at risk of developing T2DM and its complications. The three most affected populations in Canada by the T2DM are known to be from countries of South America, Southeast Asia, and some African countries. Faced with such a high prevalence of chronic diseases, especially regarding T2DM and hypertension, several frontline institutions in Quebec have designed and implemented prevention and management programs for chronic diseases by way of cardiometabolic clinics including an interdisciplinary team. While the intention is to better serve vulnerable populations in their context, this type of cardiometabolic clinic poses huge challenges in regard to its actual reach, coverage, and efficiency as intended. Building on Expanded Chronic Care Model, a framework for guiding the implementation of working intersectoral partnership, a critical analysis of strategies for prevention and management of T2DM among migrant women and men as well as of models of existing working partnerships was carried out; once the challenges, opportunities, and strategies focusing on T2DM and diversity were identified, validation semistructured individual interviews were conducted with a variety of professionals at different levels of care in order to contrast and circumscribe the contribution of advanced nursing practice anchored in a cross-sector partnership.
Reimagining Health Care Through Care as a Creative Praxis
Merel Visse, University of Humanistic Studies
Alistair Niemeijer, University of Humanistic Studies
Vivianne Baur, University of Humanistic Studies
Several efforts are made in an attempt to improve health care through efficiency and quality programmes, which often entail top-down design and implementation. The concomitant increasing tension between these programmes and personal experiences is a feature of our modern culture that values instrumental solutions to cope with an ambiguous and complex “interlocking world.” “Interlocking” refers to the nonseparateness of patients, practitioners, and the health-care systems: practices are closely interrelated and people are bound to other human beings by ties of recognition and concern. In present approaches of health-care reforms, there seems to be little room for these personal human and existential dimensions, albeit the challenges of “getting access” to these dimensions. Our contribution aims to explore an approach for health-care reforms that fosters humanization by focusing on radical particular experiences while simultaneously preventing the establishment of (yet another) “grand method,” thus relating it directly to the main theme of the conference. We will accordingly argue how we can reimagine health-care reforms, by creating relational and creative spaces for inquiry, together with those whom it concerns. Health-care reforms are seen as creative, dynamic processes between patients, practitioners, and other people relating to the world and each other. These people have personal concerns and troubles, but moreover, dreams and practical ideas of a better world. How to get access to these and how to truly include these into reforms and policies? How to honor local dynamic, complex lifeworlds? We will present and discuss our approach to reimagining health-care reforms by fostering creative spaces for people to learn about their lifeworld experiences.
Exploring the Physical Activity Experiences of Active Black Canadian Women
Joy Walcott-Francis, Simon Fraser University
Epidemiological research suggest that regular physical activity is beneficial for overall physical, psychological, and mental health, but more specifically as a modifiable risk factor for cardiovascular disease, physical activity, done a regular basis, has been shown to be positively associated with lowered risk of cardiovascular disease. Unfortunately, research on physical activity participation rates suggests that a significant percentage of Black women is not sufficiently active. However, since much of the existing research places emphasis on the barriers to physical activity for “inactive” Black women, less is known about the experiences of the women who are physically active. Using in-depth interviews, participant observation, and autoethnography, this study sought to understand and explore the physical activity behavior patterns, and their associated meanings, for a small group of highly active Black women in Vancouver, Canada. Thirteen self-identified Black women participated in the study. The transcription of the data was done verbatim and the data were analyzed using thematic analysis. Findings suggest that (1) The women’s perceptions and experiences of their body was a major determinant in how they participated in physical activity and (2) The women received, processed, and interpreted messages about the benefits of physical activity in the maintenance of healthier lives in ways that motivated them to be physically active. These findings are useful to inform policy makers about ways in which to successfully engage inactive Black women in physical activity.
Factors Influencing the Implementation of a School-Based Physical Activity Policy by Teachers
Katie Weatherson, University of British Columbia–Okanagan
Mary Jung, University of British Columbia–Okanagan
In British Columbia (BC), the Ministry of Education mandated a daily physical activity (DPA) policy requiring elementary schools to provide 30 minutes of moderate-to-vigorous physical activity as part of the educational program for children in grades 1–7. While school-based physical activity policies have the potential to increase children’s physical activity, success relies on implementation by teachers, and thus, it is important to examine implementation from this perspective. The purpose of this study was to explore the factors that influence elementary teachers’ decisions to implement DPA in one BC school district. Semistructured interviews were conducted with 12 teachers (nine female), regarding participants’ (1) implementation strategies, (2) facilitators and barriers to DPA implementation, and (3) perceptions of and recommendations for improving DPA success. A thematic analysis was used to inductively code and categorize data into themes. Overall, there was mixed feelings about the potential success of DPA. Preliminary analyses indicate four major themes that influence DPA implementation: (1) a lack of knowledge of policy guidelines, (2) student-level factors (children’s need versus motivation to be active, provision of cues, and accountability to teachers), (3) the need to maintain teachers’ autonomy (professional priorities and goals, personal values), and (4) a lack of time for unmonitored and noncurricular subjects. For more consistent and effective implementation of DPA by teachers, there is a need for policy makers and school districts to improve the dissemination of policy guidelines, link and promote benefits of DPA that align with teachers’ professional scope (i.e., learning outcomes), and monitor implementation.
The Family Transition Through Pediatric Hematopoietic Stem Cell Transplant
Christina West, University of Manitoba
Debra Dusome, University of Brandon
Lillian Rallison, University of Calgary
Joanne Winsor, University of Manitoba
Pediatric hematopoietic stem cell transplant (HSCT) is an intensive treatment that includes high-dose chemotherapy/radiation, prolonged isolation, and the possibility of death. This treatment process is demanding for child and family. Family members experience significant emotional distress, which includes anxiety, depression, and post-traumatic stress symptoms. We recently conducted a retrospective study of the family transition through pediatric HSCT using a family systems-expressive arts framework and constructivist grounded theory. Fifteen family members (six mothers, three fathers, three recipients, and three siblings) from six families participated in two semi-structured qualitative interviews (child received HSCT 6 months to 5 years prior to enrollment). Within the second interview, the family drew an image of what it was like for them to live through HSCT and were guided through an image-dialogue process. Each family member asked their image questions and then answered those questions as if they were the image. A theory of the family transition through pediatric HSCT will be presented. The pre-HSCT illness trajectory, as well as family and family clinician relational dynamics strongly influenced this transition. A painful process of family fragmentation marked by intense emotional and instrumental disruption occurred across hospitalization. Experiences of trauma were evident, particularly for parents who lived in the transplant room 24 hr/day, sustaining the ill child, while carrying intense guilt about family separation. The drawing process was particularly effective in assisting participants to articulate and explore their own treatment experiences, as well as those of other family members. One family drawing will be presented to illustrate the theory described.
Integrating a “Dialoguing With Images” Expressive Arts Process in a Constructivist Ground Theory Study
Christina West, University of Manitoba
Debra Dusome, University of Brandon
Lillian Rallison, University of Calgary
Joanne Winsor, University of Manitoba
Expressive arts approaches within qualitative research can facilitate a deep symbolic and metaphorical exploration of human experience. We recently conducted a retrospective study of the family transition through pediatric hematopoietic stem cell transplant (HSCT) using a family systems-expressive arts framework and constructivist grounded theory. Fifteen family members (six mothers, three fathers, three recipients, and three siblings) participated in two semistructured qualitative interviews. Within the second interview, families drew an image of what it was like for them to live through HSCT and were guided through a dialogue with the image. In this presentation, we will discuss this innovative expressive arts approach. Within the guided dialogue process: (1) participants gave a one to two word response to the image, (2) participants asked their image questions, (3) participants responded as the image to questions posed, and (4) participants were asked: “What does this image say to me about what it is like for a family to live through HSCT?” Research findings related to this expressive arts approach will be presented. Five phases within the “dialoguing with images” process will be discussed: (1) creating and holding a space for expression, (2) distillation of individual family images, (3) entering a dialogue with the image, (4) crystallization of individual images into an integrated family image, and (5) returning from the image process. Family drawings will be presented in the discussion of these findings.
Moving With/in Emotion in Health-Care Research: Mindfulness as a Methodology
Lacie White, University of Ottawa
Researchers exploring experiences in the context of health care frequently encounter evocative and emotionally potent stories. While dwelling within stories of illness, suffering, and dying, emotions can and do surface for participants and researchers. Emotional responses of researchers are often framed within a discourse of risk causing fatigue and burnout. Indeed, it is suggested that these influences can negatively affect the quality of the research. In this presentation, I will introduce an alternative narrative. How researchers attend to emotion in ways that support their well-being, and contribute to the rigor of the research is a capacity that can be fostered. Mindfulness will be presented as a methodology that researchers can cultivate to honor being with/in emotion, as it arises throughout the research process. Drawing on experiences from two palliative care studies, I will juxtapose a dominant view of managing emotion within data collection phases with mindfulness as a way of being present to the fullness of strong emotion moment to moment. Through this approach of cultivating a capacity for witnessing what arises in one’s experience, mindfulness is presented as a way of resisting the urge to “do” something with emotion, thereby leaving room for the unexpected to emerge. The value of this capacity to be with emotion without managing it will be discussed as an alternative approach to generating data and fostering researcher well-being. Processes for how to incorporate mindfulness methodologically will be described and illustrated.
Participant Recruitment: Tips and Tricks
Lesley Wilkes, Western Sydney University
Lauretta Luck, Western Sydney University
Harrison Ng Chok, Western Sydney University
It is documented that response rates and the retention of participants in health-related research can be challenging. While some suggest response rates in qualitative research are not a problem, it is important in reporting qualitative research that recruitment strategies and success are explicitly documented. Recruiting nurses to participate in qualitative interviews presents researchers with a number of issues. Personal attributes such as interest and motivation of the participants and whether the participant is a specialist affect recruitment. Further, environmental and organizational pressures including competing commitments for clinical practice and workload demands also impact interest in research participation. From a research design perspective, the duration of the interview and the length of time between a series of interviews are important to consider. This presentation explores these recruitment issues from our reflections on research studies we have conducted and provides tips and tricks to address them. These insights could assist new researchers in nursing and in other health-related disciplines in planning and implementing their qualitative research.
Perceptions of Barriers to Exercise in People With Fibromyalgia Syndrome: A Focus Group Study
Iseult Wilson, Ulster University
Deborrah Russell, Ulster University
Inma C. lvarez Gallardo, University of Granada
Joseph G. McVeigh, Ulster University
Fibromyalgia syndrome (FMS) is a common chronic pain condition that has a profound effect on the individual. Aerobic exercise is important in the management of FMS, however, many are unable to tolerate exercise interventions. A focus group study was designed to investigate the individual and collective experiences of barriers to exercise for people with FMS. Following ethical approval, participants were recruited purposively from patient support groups. Inclusion criteria were adults who had been formally diagnosed with FMS and who had participated in an exercise intervention for FMS. Focus groups were video and audio recorded and facilitated by a physiotherapist with experience in qualitative data collection. At the end of the study, descriptive summaries were sent to participants for verification; the data were transcribed verbatim; and the transcripts were anonymized, coded, and analyzed for thematic content by three independent evaluators. The interaction (verbal and nonverbal) between the participants was also analyzed. Fourteen people participated in the focus groups (women, n = 12; men, n = 2) and data saturation was reached. The overarching theme to emerge was a lack of understanding of the condition by others (family, friends, and health-care professionals), and society in general. This was mirrored by the analysis of the verbal and nonverbal interactions between participants. Normal activities of daily living (such as housework) were perceived as exercise, and participants reported that the negative and often prolonged effects of exercise or physical activity were not appreciated by others.
The Meanings and Experiences of Youth Living With Mental Illness: A Systematic Review of Qualitative Evidence
Roberta L. Woodgate, University of Manitoba
Corey Sigurdson, University of Manitoba
Lisa Demczuk, Elizabeth Dafoe Library, University of Manitoba
The World Health Organization estimates that more than 20% of the world’s youth are struggling with mental illness that can significantly impact youth and their families, and society more generally. Additionally, about half of all lifetime mental disorders start by the mid-teens and three-fourths by the mid-20s. Despite these findings, it is estimated that fewer than 25% of youth in need of treatment for mental illness receive specialized services, and even fewer receive a diagnosis by their doctor. Given the treatment gap, the prevalence of mental illness in youth, and the resulting distress, burden, and the potential long-term consequences of mental illness, there is a need to arrive at an increased understanding of the meanings youth assign to living with mental illness. Accordingly, a systematic review that synthesized the best available qualitative evidence on the meanings and experiences of youth living with mental illness was conducted. Qualitative research findings were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Fifty-four research papers met the inclusion criteria. The derived four synthesized findings included a different way of being, getting through all the rough times, yearning for acceptance, and room for improvement. The integration of all of the youth’s voices from the 54 papers reinforces that youth living with mental illness are still suffering needlessly. The evidence-based findings emerging from this work are valuable, as they may be used to inform and advance services, supports, and programs meant to improve the lives of youth living with mental illness.
Beyond the “Quantitative Boundary”: Using Van Kaam’s Controlled Explication Method to Delineate the Phenomenon of Staff Shortage in Hong Kong Residential Aged Care
Cheryl Chi Yan Yeung, The Open University of Hong Kong
Sandy Pin Pin Choi, The Open University of Hong Kong
Joseph Kok Long Lee, The Open University of Hong Kong
While Hong Kong’s well-developed health-care system has been acknowledged internationally, little is known about the predicament in its residential aged care (RAC) sector where staff shortage is prevalent at all levels. In developed countries, the phenomenon of staff shortage has been a growing concern and a subject of intensive quantitative studies. An assumption underlying those studies is that a better understanding of predetermined components of the practice environment can guide future recruitment and retention strategies. As a result, methodological endeavors have been much “bounded,” and participants have been hampered from deliberating issues other than those predetermined factors. This study adopts Van Kaam’s phenomenological approach to explicate staff’s lived experiences of working in the RAC sector. Data were collected from 40 individual interviews with participants recruited from publicly and privately funded RAC homes through maximum variation sampling. The phenomenological approach has enabled participants to go beyond the “quantitative boundary” to uncover various hidden factors influencing the practice environment. The use of controlled explication featured by “hypothetical identification” has revealed how various forms of “social destruction,” such as stigmatization by the mass media, the rise of customer complaint culture, and staff devaluation and demoralization resulted from premature government policies and the lack of professionalism, have encouraged staff to leave and discouraged new entrants to the sector. The results add significantly to our understanding of the factors that shape the manpower shortage phenomenon, with important implications for similar research and workforce planning in the future.
“See Me, Hear Me, Heal Me”: Reimagining the Sharing of Head and Neck Cancer Illness Narratives
Minn Yoon, University of Alberta
Pamela Brett-MacLean, University of Alberta
Helen Vallianatos, University of Alberta
Head and neck cancer (HNC) accounts for approximately 4% of all new cancer diagnoses and 3% of all cancer deaths in Canada. While a moderate decrease in HNC has been documented, the incidence of oropharyngeal cancers related to human papillomavirus is increasing and is predicted to surpass cervical cancer by 2020. Public awareness of this form of cancer, however, is low. Our project employed an innovative approach which reimagined how illness narratives can be shared through a fine-arts–based, research creation/knowledge dissemination process. Narratives were collected using questions informed by the McGill Illness Narrative Interview to explore the stories of HNC patients’ experience of illness and recovery. The context of the illness experience was further explored through family narratives. Qualitative thematic analysis identified issues related to food and eating, communication, social life, self-image, and resilience. Narratives pertaining to spirituality and the use of alternative therapies were also identified. These findings have provided the basis for a collaborative arts-based knowledge translation exhibition (scheduled beginning January 2017), aimed at relationally engaging public, professional, and research audiences and promoting knowledge and awareness of HNC illness and recovery. Ultimately, our aim is to improve the illness and healing experiences and quality of life of those who experience HNC. The broad outline of our collaborative, interdisciplinary project and emergent insights that have guided our approach to fine-arts–based knowledge dissemination will be described.
Improving Health System Efficiency in Canada: Perspectives of Decision Makers
Janice Zhang, Canadian Institute for Health Information
Dana Riley, Canadian Institute for Health Information
Kelly Hogan, Canadian Institute for Health Information
This presentation summarizes a descriptive multiple case study exploring the perspectives of senior decision makers from two Canadian provinces on health system efficiency in their region. The current project builds on a quantitative study of efficiency at the region level in Canada to better understand the views of decision makers in high- and low-performing regions on the facilitators and barriers to improving health system efficiency. Semistructured interviews were conducted with 42 provincial and regional senior decision makers in nonurban health regions of British Columbia and Nova Scotia. Interviews were digitally recorded, transcribed verbatim, verified for accuracy, and imported into NVivo 10.0 for thematic analysis. Reflexive notes for each interview were also analyzed. The coding theme was developed and revised by the research team. To validate the preliminary analysis of interview data, web-based focus groups were conducted with interview participants in each province. After coding and analysis of interview data, we identified two cross-cutting themes and five main dimensions along which key informants described actions and challenges to improving efficiency. Within the context of strong leadership and overcoming challenges in the external environment, the five dimensions of improving health system efficiency include performance monitoring for accountability and decision-making, system-level integration in governance and care delivery, partnerships outside of the health sector, physician engagement and remuneration, and flexible funding. Key informants also identified unique barriers and facilitators to health system efficiency within the rural context.