Abstract
Making Health Care More Convenient: The Client Experience of Health Services in a Mental Health Setting
Martha J. Aby, University of Washington
While discussions of integrated care are not new in the United States, the research literature has largely been about blending mental and chemical health into physical health systems. Using a critical hermeneutic application of interpretive phenomenology, this study aims to address that gap by interviewing adults with serious mental illness about their experience receiving physical health services within a community mental health center. Nine individuals, five clients and four providers, interviewed for this study were selected using the critical case criterion in partnership with the community mental health center. Interviews were digitally recorded and transcribed. Data analysis was conducted within-case followed by cross-case analysis technique. Themes emerging from data analysis demonstrate that trust, respectful behavior, logistics (e.g., transportation and insurance) and convenience were all important components of the participants’ experience when choosing medical services. Findings suggest that colocated primary care and mental health services in a location where clients feel a sense of community and is easily accessible, provides respite from insurance barriers, transportation hurdles, and stigmatizing interactions with primary care and emergency providers but offers no relief from the specialty provider system.
The Meaning of Wandering Behavior From the Perspectives of Older Adults Living With Dementia in Long-Term Care Homes
Adebusola Adekoya, University of Manitoba
Lorna Guse, University of Manitoba
Wandering is a common behavior among older adults living with dementia in long-term care (LTC) homes. This behavior is often interpreted in a way that demeans the personhood of those who wander. It has been described as a disruptive behavior. Little is known about the meaning of wandering from the perspectives of those who wander. It has been suggested that older adults living with dementia to some extent maintain their personalities and preferences. We know from research that older adults living with dementia can answer simple questions but few studies attempt to interview those living in LTC homes. This study draws theoretically from Kitwood’s Enriched Model of Dementia Care which has challenged caregivers to focus on the person rather than the behavior. The purpose of this study is to explore the meaning of wandering from the perspectives of those who wander. Taking a phenomenological approach, interviews will be conducted while walking with participants. Questions will include, “Do you enjoy walking?” and “How are you feeling about walking right now?” While wandering behavior can be disruptive to others (staff, families, other residents), the literature suggests it can also signal a need for movement or reflect a past coping strategy. By learning about the perspectives from those who wander, caregivers may develop a new interpretation of wandering. This study is in progress and preliminary findings will be presented.
Evolution of the Epilepsy Narrative: What Can Be Learned From the Cancer Narrative Community?
Devon Andersen, University of Saskatchewan
Ulrich Teucher, University of Saskatchewan
A visit to most bookstores reveals at least a dozen cancer autobiographies, primarily those involving an ongoing or successful “fight” against one’s illness. The few epilepsy autobiographies that exist have appeared in the past 10 years and show significant differences from earlier anonymous epilepsy narratives (Schneider & Conrad, 1983). In an analysis of published and unpublished epilepsy narratives, I noted a common scripted medical trajectory similar to that of cancer patients. That is, these individuals were assessed to identify the source of the illness (e.g., tumor, lesion, etc.) that is causing their symptoms (e.g., seizures) and that can be surgically removed. The identity of the illness as a whole is often taken on by this illness source (that is, for many their tumor is their epilepsy), and with its successful removal comes the conceptualization of a successful removal of the illness itself. This conceptualization shifts epilepsy from what is seen as a chronic illness to one that can be permanently “conquered,” despite the fact that many individuals continue to experience some symptoms after surgical treatment. This restitution narrative parallels many cancer narratives, where individuals are treated and considered cancer-free despite the possibility of side effects and recurrence. As such, both epilepsy and cancer can be seen as transient illnesses that can become visible unpredictably as well as go through periods of remission during which they are invisible.
Use of E-Health Tools by Patients and Providers: A Relational Ethics Analysis in Progress
Catherine Backman, University of British Columbia
Anne Townsend, University of Exeter
E-Health Ethics Team, Arthritis Research Centre of Canada
Rapid development of and increased access to online information, health apps, and other digital health tools are influencing the patient–health-care provider relationship. We conducted a two-phase study involving patients with multimorbidity and health-care providers to explore the role of e-health tools on provision of care and patient/provider expectations. People living with multiple chronic conditions were chosen in part because they deal with complex self-management and care plans, and sometimes contradictory recommendations for various conditions. Study design was informed by narrative traditions, as we aimed to understand experiences of patients and health professionals regarding their interactions in clinical settings and the influence of e-health. Phase 1 involved separate focus groups with 18 patients and 18 health professionals to broadly explore issues. These data informed phase 2 in-depth interviews (plus telephone follow-up) with 17 patients and 12 health professionals. Analysis is ongoing. The primary forms of e-health cited by patients were online searches for health information, peer support through social media sites, electronic access to test results, and digital monitoring with wearable devices (e.g., pedometer) or mobile apps (e.g., tracking diet, blood pressure). Health professionals used online searches for current diagnostic and intervention information, primarily curated sites and tools (e.g., calculating disease activity scores). Impressions varied considerably regarding desired used of e-health tools. The relational ethics lens help direct the analysis toward potential burdens and benefits arising from the plethora of e-health resources. Preliminary findings will be presented, and the audience welcomed to discuss emerging findings and potential implications.
Medical Uncertainty, Health Care, and the State: Institutional Interaction in the Disability Determination Process for Chronic Pain
Lindsay A. Berkowitz, UC Berkeley
Due to increasing rates of individuals with multiple chronic conditions, once-accepted distinctions between medical conditions have become increasingly unclear. This uncertainty reverberates into all health-care institutions, and in this study, I focus on the U.S. Social Security Administration (SSA) and its responsibility to decide whether individuals’ chronic conditions are considered “disabilities” deserving of state resources. The disability determination process (DDP) is composed of institutional interactions between medical, legislative, and welfare institutions that define and categorize medical conditions and evaluate if they are disabling. This process is complex, and creating well-defined categories for decision-making is marred by internal and relational changes in institutions. This study looks at how DDP actors and outcomes react to change and uncertainty in the conception of chronic pain, identified as one of the most problematic conditions to integrate into the SSA framework. Through 21 interviews with disability claimants, physicians, legal advocates, and SSA medical examiners, I find that medical uncertainty due to chronic pain’s co-occurrence with other conditions and lack of clear biomedical evidence leads to administrative uncertainty, moral dismissal, institutional noncompliance, and denial of disability. However, legal advocates translate claimants’ conditions into legal arguments that win final court appeals. Hence surprisingly, though legal actors do not change SSA administrative practices, they are most responsible for final SSA determinations. As most interviewees are initially denied disability and experience deteriorating health over multiple-year waits, tracing the determination process gives important insight into how contemporary uncertainty and complexity in institutional interaction affects the health care of highly vulnerable populations.
Exploring Intersections of Formal and Informal Care for Older Adults in Rural Alberta
Julia Brassolotto, University of Lethbridge
The proposed research will explore the intersections of formal and informal care for older adults with a focus on vulnerable care providers. Little attention has been paid to the health and wellness of those who perform care work for older adults living in residential care facilities in rural Alberta. In light of Canada’s aging population, challenges with recruiting and retaining rural nurses, and the restructuring of the continuing care system, the challenges experienced by rural care providers are constantly changing. In an extension of the principal investigator’s postdoctoral work, the team will conduct case studies using critical ethnography and document analysis methods in order to better understand working conditions for care workers in rural Alberta. The research team will conduct in-depth interviews with paid and unpaid care workers and perform participant observations in the facilities. Special attention will be paid to matters of gender, race, socioeconomic status, sexuality, and religion, and the ways in which they enable and/or constrain care worker experiences in this rural context. The team will also explore the ways in which these social categories are included or excluded from provincial and facility-level policies and practices. This research will identify elder care priority issues at the macro- (policy), meso- (health-care system), and microlevel (family and community) of care.
What Patterns, Processes, and Meanings Are Found in Descriptions of Childhood Experiences of Being Put on Restrictive Diets by One’s Parents?
Isabel Brun, University of Calgary
In Canada, childhood obesity continues to be a serious public health concern. Parents of children with obesity naturally want to protect their children from developing health issues and being on the receiving end of weight related bullying and marginalization. One way of doing so might be to restrict their child’s food intake (i.e., put them on a diet) in order to try to control their weight and size. Restrictive feeding practices are often implemented with the best of intentions; yet, research suggests that these practices can have a negative impact on children’s eating behaviors. Despite these concerns, minimal research has been conducted to thoroughly examine how children experience these practices. Because the research in this area is largely quantitative, many social and psychological processes affected by parental restrictive feeding are understood in a certain way that may not take subjective experience into account. Thus, the current study investigated the following research question: What patterns, processes, and meanings are found in descriptions of childhood experiences of being put on restrictive diets by one’s parents? Semistructured interviews with young adults who experienced childhood parental restrictive feeding practices were conducted. A constructivist grounded theory analysis was used to develop a preliminary conceptualization of the psychological and social processes involved in childhood experiences of parental restrictive feeding. Preliminary results will be discussed.
Increasing Empathy in Employees Who Have Bullied as an Intervention
Susan Coldwell, Nova Scotia Government and General Employees Union
Workplace bullying carries physical and psychological health consequences. Traditional approaches often ignore or seek tougher sanctions. The EMPATHIC program is an intervention for bullying behavior. The goal is to promote sustainable change through self-reflection and increased empathy. The objective is to develop strategies and problem-solving skills to prevent a recurrence of offending behavior. Inquiry elicits understanding of the difficulties which brought the participant into the program and feelings about taking part in the program. This a supported coaching process, not counseling or therapy, although in promoting change may be seen as a therapeutic process. The shared task of this psychoeducational program is to look at how behavior and dynamics can be changed going forward and help reduce anxiety. Identifying an individual’s level of perceived injustice is a significant indicator of the ability to return to work or to maintain one’s self in the workplace. Subscores relate to responsibility/fairness and severity/reparability. Understanding how an individual normally deals with conflict can provide insight into what has gone wrong as well as indicate future strategies. It is important to understand if the participant is someone who might seek revenge or retaliation. Short exercises introduce strategies to promote forgiveness thereby building the capacity to have empathy. A final report is provided to the referral contact and copied to the participant. Bullying behavior does not happen in isolation from environmental factors and further recommendations may be made to the employer regarding organizational, leadership, and workplace culture.
Using a Knowledge User Advisory Committee to Ensure Research That Is Relevant and Useful in Practice: Insights From a Qualitative Case Study
James Conklin, Bruyère Research Institute/Concordia University
Karen Chun, Bruyère Research Institute
Large research projects often make use of advisory committees (ACs) to help guide the research and to assist with knowledge dissemination. Curiously, almost no research has been done on the factors that facilitate an effective research AC. We carried out a qualitative study of the knowledge user AC for a 3-year health services research program in Ontario that involved 10 separate research projects. We wanted to understand how this AC would ensure that knowledge generated through research is relevant and useful for policy makers, managers, administrators, and end users and that the knowledge was used by intended audiences. Interview and observational data were gathered through six iterations of AC meetings over 24 months and was analyzed using deductive and inductive coding methods. Nine key findings emerged from this analysis, including the AC was a dynamic social structure that changed and developed over time, this developmental trajectory resembled a process of social learning, and several factors clearly facilitated the work of the AC (including diversity of viewpoints, the roles played by the AC chair and the research leaders, providing ample time for discussion during meetings, allowing members to form relationships and engage in informal exchanges, and treating the AC as a community as well as a committee). Our findings will be helpful for other research teams who intend to use an AC to ensure the relevance of their research and to help disseminate findings.
Perceptions of Health: Influencing Maternal Role Transition Among Low-Income Mothers
Debra Beach Copeland, Loyola University New Orleans
Bonnie Lee Harbaugh, University of Southern Mississippi
Mothers are unprepared and uninformed about postpartum health and have unmet needs for information in the postpartum period. Women experience a variety of physical and emotional problems during the immediate postpartum period and may continue to experience health problems during the first year after birth. Further, maternal comorbidities have continued to increase during the postpartum period and new mothers may not have an accurate perception of their health which may lead to less engagement in self-care and preventive practices. The purpose of this descriptive qualitative study is to determine the physical and emotional health needs of eight first-time, low-income mothers as they transition to the maternal role. In this secondary analysis of 21 low-income mothers at 6 weeks to 6 months after birth, we will compare responses of mothers with the highest (75th percentile; n = 5) and lowest (25th percentile; n = 3) maternal competence scores as measured by the Parenting Sense of Competence Scale. A thematic content analysis will be conducted to explore how physical and emotional health influences maternal role transition. Transcripts will be analyzed for relevant and recurring themes. The research questions that guide this study include: What are the physical and emotional problems of low-income mothers in the 25th and 75th percentile groups? How do these physical and emotional problems influence the mothers’ transition to the maternal role? The results of this study are in progress. Health-care professionals must inform mothers of physical and emotional problems that could develop after birth.
Using Visual Elicitation in Palliative Care Research
Laura Cottrell, University of Alberta
Visual elicitation methods may enhance data quality in qualitative research, but they are rarely used in the palliative care setting, due in part to the perceived vulnerability and frailty of the participants. Visual elicitation methods include photovoice, participant drawing or collage, photography, and artifact elicitation interviews. Images and text are processed in separate areas of the brain, thus they represent different ways of knowing. Due to these differences, images may offer an additional means of gaining insight into the multiple ways in which participants interpret and understand their world. Visual elicitation methods may help participants to express abstract ideas or tacit knowledge, may facilitate communication, and may reduce power inequities in research. Using visual elicitation methods may, however, be expensive, time-consuming, and may increase the complexity of ethical challenges in research. Before using visual elicitation methods in palliative care settings, researchers must ascertain whether their use will enhance the quality of the data, rather than merely augmenting it. Challenges such as vulnerability and frailty in palliative care participants may be overcome by using adapted methods, such as guided imagery, and by empowering participants by honoring their voice. Despite challenges in the palliative care setting, using visual elicitation methods to combine images with text may help cocreate more powerful data than using text alone.
Does Transitional Housing Matter? The Contributions of a Housing Program on Homeless Youth’s Mental Health Outcomes
Pushpanjali Dashora, University of Alberta
Shiva Kiaras, University of Alberta
Youth experiencing homelessness in Canada face several challenges including mental health issues. However, evidence is limited regarding approaches that are effective in addressing the specific needs of this population. The current study aims to examine the impact of a transitional housing program on youth outcomes particularly on substance use, depression, self-efficacy, and self-identified goals. The program operates primarily from “harm reduction” and “housing first” philosophies, two unique approaches to transitional housing for youth. During their stay in the program, youth were offered various services and resources including mental health services. Fifteen youth (ages 18–24) were recruited from the housing program. Youth were administered three instruments to examine their depression, substance use, and self-efficacy. Next, in-depth, semistructured interviews were conducted to gain information about their needs and self-identified goals. Follow-up interviews and questionnaires were administered at 6-months postbaseline to examine the impact of the housing program on youth’s outcomes. The preliminary analysis of qualitative data suggests that youth’s mental health was impacted by a sense of a reliable place to live and call home. In follow-up interviews, several youth described achieving sobriety while living in the transitional housing program. A sense of accomplishment and success was reported as youth were not only able to set important personal goals, they were also able to achieve them. This study will add critical evidence to the very limited pool of research on transitional housing for youth and pioneer a new knowledgebase on how the program model works within a housing first program in Canada.
Clinical Reasoning Processes to Recognize Delirium: Comparing Registered Nurses (RNs) With Licensed Practical Nurses (LPNs)
Mohamed El Hussein, Mount Royal University
Joseph C. Osuji, Mount Royal University
Sandra Hirst, University of Calgary
In a previous study involving registered nurses (RNs) working with older adults in acute care settings, it was proposed that “chasing the mirage,” “tracking the footsteps,” and institutionalizing clinical reasoning are theories RNs used to recognize delirium in older adults. These theories illuminated how micro-, meso-, and macrovariables impacted RNs clinical reasoning processes. The purpose of the current study was to compare the clinical reasoning processes RNs use to recognize delirium with and those of licensed practical nurses (LPNs). The study also aims to refine and challenge the above mentioned theories and evaluate the fittingness of the emerging categories with these theories. Theoretical sampling was done to interview 28 nurses. Nurses had different educational backgrounds and job titles (20 RNs and eight LPNs). Grounded theory approach was used for data analysis. A number of differences in clinical reasoning were identified between the RNs and LPNs. The data suggest that the processes for storage and recovery of clinical cues are more advanced and explicit in RNs than in LPNs. RNs were more concerned about problem-solving and pattern building, whereas LPNs’ main concern was finding an approach that worked based on the unit and hospital norms. Linear trial and error was the dominant reasoning approach for LPNs. RNs were more cyclical and analytical in their reasoning focusing on processes rather than outcome. Analysis showed that regardless of the level of education (RN, LPN), nurses were using the theories in different ways and at different levels of complexity to recognize delirium.
Prevention of RhD Alloimmunization in Northern British Columbia: An Interpretive Description
Trina Fyfe, University of Northern British Columbia
Josée Lavoie, University of Manitoba
Geoffrey Payne, University of Northern British Columbia
Despite best practice guidelines, international evidence suggests that the provision of anti-D prophylaxis to immune globulin (RhD) negative pregnant women is suboptimal. Missing from the literature is research exploring the factors that continue to put RhD negative pregnant women at risk for RhD alloimmunization. The purpose of this project was to understand why RhD negative pregnant women continue to be at risk for RhD alloimmunization within the context of northern BC. The specific research questions are (1) How do health-care providers make decisions regarding the care of RhD negative pregnancies in northern BC? and (2) How do RhD negative women in northern BC experience pregnancy? This poster presentation describes a qualitative approach used to address the need for rural-centric clinical guidelines. Using interpretive description, interviews were conducted with RhD negative women that have been pregnant and health-care providers to explore experiences of RhD negative pregnancies and care within northern BC. A focus group was used with health-care providers engaged in adapting perinatal guidelines in a northern BC rural area. A reference committee guided the research process and provided insights into data analysis to ensure applicability to practice. A qualitative approach with these two populations has provided greater understanding into the depth of the quality of care for RhD negative pregnancies and the decisions that inform patient safety. This study provides information to inform the gap in clinical guidelines, guideline adaptation, decision-making, and health literacy in rural health-care settings. Thus improving care for RhD negative women at risk of developing RhD alloimmunization.
Bounding and Building Our Research: An Evolving Conceptual Framework in the Awareness to Behavior Change (A2B) Study
Emily Gross, Occupational Cancer Research Centre
Desre Kramer, Occupational Cancer Research Centre
D. Linn Holness, St. Michael’s Hospital
Conceptual frameworks simultaneously bound and build our research. They ground us at each stage of qualitative inquiry, but when allowed to iteratively evolve and adapt to our data, they open new ways of understanding complex research questions. We move from conceptualizing a study, through to data collection, analysis, and reporting. As we do so, we move through waves of first bounding the research to what is known, then to evolving the conceptual framework and our understanding according to the data, and finally to reporting based on the evolved variables in the conceptual framework. In our awareness to behavior change (A2B) study, we were looking at how awareness of carcinogenic occupational exposures leads to community action for change. This was a complex research question that has matured since it was first asked in 2014. We are in our third cycle of this process of conceptualization, growth, and reporting, and with each cycle, our conceptual framework has evolved and adapted in parallel. Our conceptual framework has undergone an intricate process of change as we have come to learn more and as the focus of our study has shifted cycle by cycle. This poster will focus on the process of growth and change and the decisions and considerations that informed each stage. With each iteration, we are able to deepen our understanding of our complex research question and gain new insights into a highly contested process.
Cross-Case Analysis Methodology for a National Knowledge Transfer and Exchange Intervention: Sun Safety at Work Canada
Emily Gross, Occupational Cancer Research Centre
Desre Kramer, Occupational Cancer Research Centre
Thomas Tenkate, Ryerson University
Outdoor workers have a higher risk of skin cancer and heat stress compared to indoor workers, and occupational sun exposure is a significant risk factor for both conditions. However, sun safety programs can be challenging to successfully implement in outdoor workplaces. The Sun Safety at Work Canada project uses knowledge transfer and exchange (KTE) principles to assist 14 Canadian outdoor workplaces enhance sun safety. The study was framed by a conceptual framework to determine the factors (i.e., knowledge source, workplace context, outer context, KTE activities) that facilitated knowledge utilization (i.e., enhancing workplace sun safety programs). A cross-case analysis methodology was used to evaluate the intervention. This methodology is useful when researching diverse cases with unique contexts. The evaluation had three time-points. Each workplace was a “case.” First, rich descriptions were generated for each case, allowing small-scale theories to be formed about the factors that promoted/hindered the implementation of the sun safety programs. Second, comparisons across the cases allowed for a deeper understanding of the impact of contextual factors. Third, findings were analyzed across time to understand the evolution of the predictors of sun safety program implementation in these workplaces. By collecting data on the workplaces’ contextual factors, KTE strategies, and the types and characteristics of knowledge use across time, comparisons can be made across and between cases to provide greater evidence of factors influencing change, with a goal of increasing generalizability. Results will be available to present from the pre- and midintervention evaluations, and preliminary results may be available from the final evaluation.
From Awareness to Impact: Community Action to Remediate Industrial Pollution in a Northern Ontario Mining Town
Emily Gross, Occupational Cancer Research Centre
Desre Kramer, Occupational Cancer Research Centre
D. Linn Holness, St. Michael’s Hospital
This qualitative, exploratory study focuses on environmental changes that have taken place in the historical mining community of Sudbury, Ontario, whose environment was devastated by past mining practices. How can communities come together for collective impact on the environmental degradation exacted by local industry emissions? How does this look in a community that was deeply indebted to the offending industry as the community’s primary employer? We are looking at collective action, how the community came together, and the forces that drove the regreening initiatives in Sudbury. Semistructured interviews were conducted with labor and industry representatives, members of the community, academics, and politicians based in Sudbury or who have a connection to Sudbury during the regreening efforts. Interviews and analysis are based on an evolving conceptual framework. Interviews are recorded, transcribed verbatim, and listened to by the research team. Analysis proceeds using data reduction techniques described by Miles, Huberman, and Saldaña. The research team meets frequently to discuss emerging themes, reconcile differences in analysis findings, and adapt the conceptual framework. Findings will focus on the forces that lead from the awareness of the environmental impact of industry to collective action. Early results include the forces of (1) embarrassment and (2) pride; the importance of (3) evidence-based knowledge, (4) cross-group collaboration, and (5) leadership; and (6) external forces. From these results, a practical guide will be developed that will help other groups organize for collective impact on industrial emissions in their communities.
Meaningful Methodological Creativity: Integrating Knowledge From Multiple Sources to Establish a Clinical Intervention for Children and Adolescents With Cancer
Helle Haslund, Clinical Institute Aalborg University
Malene Dahl Jeppesen, Department of Pediatric Oncology
The purpose of the study is to develop a clinical intervention aiming at reducing constipation complications in children and adolescents with cancer. Children/adolescents with cancer often suffer from constipation due to treatment with chemotherapy and strong opioids and studies have shown that constipation contributes to poor quality of life and causes children/adolescent much suffering. Oral intake of medications may in itself be a daunting task for the child/adolescent because of nausea and pain. Anal fissures resulting from constipation are potentially life threatening because of the risk of fulminant perianal pseudomonas infection and septicemia. Constipation can also cause delays in life-saving chemotherapy. Nursing care regarding constipation may be neglected due to the many specialized complex treatment and care tasks requiring the attention of nurses and doctors and there is a lack of evidence on how to treat and prevent constipation.
Effective Social Support to Protect Elderly People’s Quality of Life in Sri Lanka: A Narrative Study
Machiko Higuchi, National Center for Global Health and Medicine, National College of Nursing
Chandani Liyanage, University of Colombo
The elderly population in Sri Lanka has increased rapidly. The percentage of those over age 60 was estimated to be 12.3 in 2012, as compared to 9.2 in 2001. Furthermore, life expectancy at birth was 78 years. This increase has occurred in conjunction with a declining birth rate and a relatively high poverty rate. Only 35% of those aged 60–69 years receive support in performing instrumental activities of daily living (IADLs), compared to 67% of those over age 80. While social welfare support services for the elderly, such as day care and community centers, are required to protect their quality of life, little is known about the role social support plays in the daily lives of elderly people in Sri Lanka. This study investigated the daily lives of elderly people, who independently performed IADLs. We conducted in-depth interviews to explore the everyday lives of five elderly individuals over age 75, living in the Western province of Sri Lanka. A narrative approach was used for data analysis. Results showed that elderly people obtained basic education, lived with extended family, attended to their ailments, and kept themselves occupied by conducting business and participating in community social activities. Along with a purpose in life, participants believed their longevity was due to healthy local eating habits, accessibility to health services, and maintaining decent relationships with family members. Findings suggest that community based support for the elderly should be implemented immediately.
Already Doing It! Sexual Health Knowledge and Sexual Agency Among Adults Living With a Label of Intellectual Disability
Rachelle Hole, University of British Columbia
Dylan Ermacora, University of British Columbia
According to the World Health Organization’s definition of sexual health, the “sexual rights of all persons must be respected, protected, and fulfilled.” Unfortunately, when examining the history of sexuality and sexual health of adults who live with a label of an intellectual disability, research continues to show that there is a lack support for the sexual agency of adults with intellectual disability. In fact, adults with intellectual disability encounter many barriers, such as community, parent, and staff attitudes, limited sexual knowledge, lack of relevant sexual health education, and limited sexual opportunities. In this session, we present the findings of a descriptive qualitative study exploring the experiences of sexual education and sexual knowledge among adults with an intellectual disability (self-advocates). Implications for policy and practice will be discussed with an emphasis on the importance of promoting sex positive education to support the sexual health and sexual agency of adults with intellectual disabilities.
Game On: Using Gamification to Engage and Motivate Staff Education in Acute Care
Lillian Hung, University of British Columbia
Doris Bohl, Vancouver Coastal Health
Jenifer Tabamo, Vancouver Coastal Health
Alison Phinney, University of British Columbia
About 40% of older people in general hospitals have dementia, and evidence showed that hospitalization has detrimental effects on people with dementia. Hospital leaders are challenged to engage staff in change of attitudes, knowledge, and culture to meet the changing needs of patient population. This poster presents a project of using gamification to achieve the goal of motivating staff engagement and passion to advance dementia care in hospital units. Gamification refers to applying game thinking to nongame context to make learning more exciting, fun, and effective. We focused on game dynamics such as receiving rewards, recognition, social experience, and appreciation. Staff received surprise prizes when they completed various games in a funfair. These included virtual badges, trophies, praises from clinical leaders, and points redeemable for chocolates. The funfair was videotaped, and the video data were coanalyzed by staff and the researchers in focus groups. Our findings suggest that both extrinsic and intrinsic rewards are important for the success of staff education event using gamification.
“The Brain Needs to Relax to Function”: Patients With Dementia Explain How the Hospital Environments Affect Their Care Experience
Lillian Hung, University of British Columbia
Doris Bohl, Vancouver Coastal Health
Jenifer Tabamo, Vancouver Coastal Health
Alison Phinney, University of British Columbia
Recognizing the environment can have important impacts on care experiences of people with dementia, there has been a growing interest in developing the knowledge base in environmental design to improve hospital care for people with dementia. However, few studies explore the firsthand perspective of patients with dementia, their opinions, and experiences with the hospital environment. In this action research, we used walk-along interviews to elicit the views of five patients with dementia about the hospital environment while they were staying in a medical unit. One researcher conducted 20 hours of participant observation, and two family members completed a systematic environmental assessment to help understand the environmental impacts on patients with dementia. Participants gave useful insight into what was supportive and unsupportive in relation to specific environmental features and what can be done for improvement. The perspectives of patients and families have practical implications for informing strategies to make environmental changes. Participants depicted that key attributes of a supportive environment were a place of citizenship rights, a place of safety and comfort, a place of enabling function, and a place of supporting human interactions. Participants in the study felt that their participation in research offered them an opportunity to voice their opinion, and they expect that learning will be shared in education and inform future actions.
Exploring the Impact of Differing Refugee Status on the Well-Being of Somali Women Resettled in Canada
Anisa Isse, University of Manitoba
Lynn Scruby, University of Manitoba
Donna Martin, University of Manitoba
Canada has multiple policies that define the rights, entitlements, and legal status of resettled refugees. Located literature indicates that legal status influences the well-being and resettlement experiences of refugees. To more thoroughly explore the impact of differing legal refugee status, there is a need to conduct qualitative research with refugees who differ in refugee status but have similar demographics such as ethnicity. This descriptive qualitative study will explore how legal refugee status impacts the well-being of Somali women residing in Winnipeg. Two theories, feminist intersectionality theory and the theory of well-being in refugee women experiencing cultural transition, will be used to guide the study. A minimum of nine participants will be recruited using purposive sampling to ensure at least three women with each of the following refugee statuses is recruited: (a) government assisted refugees, (b) privately sponsored refugees, and (c) refugee claimants. Each participant will be interviewed at least once with the use of a semistructured interview guide and a digital audio-recorder. Audio-recordings will be transcribed verbatim. Another data source will be a reflective journal. Data will be read and reread to develop a high-quality category scheme. Once the category scheme has been developed, the data will be read in its entirety and coded for correspondence to the categories. Findings of this study will have implications for policy makers, health-care providers, social-service providers, and settlement workers who have the potential to influence the lives, resettlement experiences, and well-being of vulnerable refugees in Canada.
Blurred Lines: The Liminality of Mobility Scooters
Sharon Jang, University of British Columbia
Ben Mortenson, University of British Columbia
Laura Hurd Clarke, University of British Columbia
R. Lee Kirby, Dalhousie University
The use of mobility scooters (three- or four-wheeled devices controlled by a tiller) is increasing due to their affordability and acceptability. However, scooter users encounter a variety of barriers in their communities. Therefore, we conducted a study to explore the everyday experiences of scooter users within the context of their physical and social environments. Semistructured interviews were conducted with 20 older scooter users (mean age of 63 years). Our preliminary analysis identified three main themes. Accidents and altercations described mishaps users experienced, including confrontations with others in the community. Dealing with the built environment explored the barriers scooter users encountered and techniques used to overcome them. Liminal devices revealed the uncertain status of scooters as both disability signifiers and mobility devices (e.g., whether users are treated as pedestrians or vehicles). This study provides insight to the problems faced by scooter users and identifies potential solutions to reduce the barriers and stigma they experience.
A Scoping Review of Diabetes and Obesity Services for Urban Indigenous Peoples in Canada
Michael Jonasson, University of British Columbia Okanagan
Donna Kurtz, University of British Columbia Okanagan
Diabetes and obesity are health concerns that disproportionately affect Indigenous peoples globally. In Canada, urban Indigenous people (First Nations, Metis, and Inuit) are one of the youngest, fastest, growing populations. They are diagnosed with diabetes and obesity earlier and suffer worse complications than non-Indigenous people. This presentation shares insights from a scoping review of peer-reviewed and gray literature, published within the last 10 years, aimed to identify urban diabetes and obesity services and barriers in service provision and sustainability. A total of 2,609 publications were found in a database search, yet only 12 that met the search criteria were reviewed. Major themes of diabetes and obesity services included use of traditional healing (smudging, medicine wheel, and traditional foods), food security (nutrition education, cooking classes, and community gardens), health education, the use of telehealth, and mental health. Barriers were difficulties obtaining and maintaining funding, limited community capacity, and lack of facility space. Culturally adapted and community-based service provision was common. The lack of current publications with a Canadian context suggests the increased need for diabetes and obesity services specific for urban Indigenous people. In addition, minimal available evaluative data indicates lack of information or reporting on program effectiveness and sustainability that could influence community-informed service provision. Diabetes and obesity services for urban Indigenous peoples is needed to go beyond behavior modification and focus on underlying determinants of health that influence optimal well-being.
How Processes of University Ethics Approval for Research in Domestic Violence Can Mirror Strategies of Abuse That Perpetrators Use to Silence and Control Their Partners
Sarah Kabanoff, University of Newcastle
Deborah Loxton, University of Newcastle
Jan Coles, Monash University
Debbi Long, Monash University
Common strategies in domestic violence (DV) are used by perpetrators to create dependency in their partners and prevent them seeking help or reporting. Many strategies employ epistemic violence, which scholars such as Spivak, Dotson, Anton, and Pollack explain, use language to undermine victims’ interpretations of abusive behavior, and silence/mute their communicative efforts. Conventional interventions that aim to combat DV involve either biomedical or legal frameworks. Researchers such as Smart, Kelly, Radford, and Gavey describe the harmful effects resulting from a retributive justice model as punishment of perpetrators, not necessarily aligning with women’s actual needs when escaping violence. The inadequacies of the biomedical framework regarding engaging or even recognizing women’s lived experiences are critiqued by Locke, Martin, and Scarry. Additionally, Foucault’s work recalls the potentially disciplining effects of the biomedical paradigm on individuals. This presentation describes a mirroring of epistemic violence observed through processes of university ethic applications for DV research. The rules by which the “game” is played are written by an authoritative external panel of experts using a paradigm that invalidates, distorts, or makes invisible the lived experiences and wishes of participants, who are the focus of the study. This system also has the power to deny women’s voices being heard, by demanding exclusion/inclusion criteria, informed by a legal paradigm aiming to protect universities from litigation, rather than the participants’ best interests. This silencing can occur despite the aims of the study and despite women’s interest and consent to participate.
A Two-Way Street for Healing? An Alternative Model of Operations in Domestic Violence Services to Better Align With the Healing Processes of Both Clients and Staff Alike
Sarah Kabanoff, University of Newcastle
Deborah Loxton, University of Newcastle
Jan Coles, Monash University
Debbi Long, Monash University
Many professionals working in the domestic violence field have also had personal experiences of violence. Working in this sector is a way to empower oneself by helping others and provides the financial and social stability to support independence and autonomy. Additionally, the empathy gained through common experience can provide valuable and insightful skills for providing client-centered care, more effectively assisting the process of empowerment and recovery. However, burnout, compassion fatigue and vicarious trauma are also common effects of working in the domestic and family violence sector. If left unchecked, this can result in depression, anxiety, and post-traumatic stress disorder and can also impede the efficacy of workers. Conventional models of practice in the sector still adhere to patriarchal, hierarchical business models placing clients at the bottom, staff above, management above that, and so on. By acknowledging the significance and value of shared lived experiences rather than seeing them as a weakness, a different, collaborative model of operations could be used to better harness the skills of staff, while generating a more sustainable model of operations. A new model could encourage clients to create greater levels of independence and recognize healing as cyclical; it would also better prepare and protect both clients and staff for the nonlinear nature of healing.
Trends in Japanese Studies on Research Utilization in Nursing Practice
Tomomi Kameoka, National College of Nursing
Naomi Funashima, Chiba University
Kyoko Yokoyama, Gunma Prefectural College of Health Sciences
The aim of this study was to explore the trends in Japanese studies on research utilization in nursing practice. Studies focusing on research utilization in nursing practice were extracted using systematic database searches of Ichushi-Web (1983–2015) and examined according to the publication year, research design/methodology, and research theme. Twenty-three studies were identified. The first study was reported in 1996, and an average of about 1.15 studies a year were published until 2015 in Japan. All 23 studies employed a nonexperimental methodology. Three (13.0%) of them involved qualitative analysis and 20 (87.0%) involved quantitative analysis. The most frequently used research design was a survey (n = 19, 82.6%), and the most frequently employed data collection method was a questionnaire (n = 20, 87.0%). The subjects of the studies were nurses (n = 19, 82.6%), nursing administrators (n = 3, 13.0%), and the literature (n = 1, 4.3%). The themes of the 23 studies were analyzed qualitatively and inductively and seven categories were generated. They were “condition and related factors of research utilization of nurses,” “condition and related factors of research utilization competency of nurses,” “instrument development related to research utilization and exploring its characteristics,” “nursing administrators’ understanding of inhibitory factors and the relationship with their attributes,” “concept generation related to research utilization in nursing practice,” and “hospital support for research utilization by nurses.” The development of continuing research-based education programs for nurses on research utilization in Japan is a future issue.
Families’ Experiences Living With Acquired Brain Injury: A Narrative Inquiry Study
Jane Karpa, University of Manitoba
Wanda Chernomas, University of Manitoba
Kerstin Roger, University of Manitoba
Tuula Heinonen, University of Manitoba
Notoriously known as the silent epidemic, acquired brain injury (ABI) has reached worldwide epidemic proportions. While ABIs are manifested in individuals, families’ lives are dramatically affected by ABIs. Individuals with an ABI can experience a range of cognitive, behavioral, and emotional impairments, often not visible, that may cause significant disruptions/changes to their psychosocial presence and identity. These post ABI changes can directly impact individuals’ and families’ experiences and lead to an overwhelming sense of loss. The purpose of this research study is to examine families’ experiences living with ABI. This study will use a research approach that includes both the affected individual family member and the family together as a family group. This will be a qualitative narrative study. The purpose of narrative inquiry is to capture and examine the stories people tell to explain their lives. Families build stories/narratives from reflecting on how they make sense of their world, express rules of interaction, and create beliefs about relationships. Narrative inquiry emphasizes meaning development through the characteristics of relatedness, identity, and time; therefore, it is a useful methodology for examining families affected by an ABI. While narrative inquiry within the social sciences has been utilized extensively with individuals and groups, its application to investigations with families as a unit is unique. The purpose of this poster presentation is to provide an overview of the background, conceptual framework, and methodology of this PhD research proposal, emphasizing the rationale for the use of narrative inquiry with families’ experiences living with ABI.
Identity Change and Transition After Brain Injury in Athletes: A Thematic Analysis of Professionals’ Perspectives
Franziska Kintzel, University of Calgary
Literature suggests that identity change can be linked to brain injury. For example, a brain injury that forces an athlete to involuntarily leave their sport may forever alter their identity. Athletic dreams and goals remain unsatisfied, while the often invisible psychological impacts of a brain injury can go unnoticed to the outside world, leaving the sufferer isolated in their experience. Effective multidisciplinary support can be essential in the process of navigating one’s life, career, and relationships after brain injury. This study gathered secondhand accounts from professionals of the firsthand experiences of brain injury survivors, particularly athletes. Three female University of Calgary affiliated professionals (two counseling psychology students, one registered psychologist), working and researching in the areas of brain injury and/or sports psychology, were identified through snowball sampling. Semistructured interviews were conducted to gather their views on identity changes and the impact of career transition in individuals after a brain injury as well as to understand their perspectives on effective support in health care. Thematic analysis suggests that individuals who sustain a brain injury must renegotiate and continuously explore various aspects of their identity. Additionally, response to brain injury may depend on the type and permanency of the injury as well as the individual’s values and overall psychosocial support. Results will ultimately inform a further investigation of athletes’ personal experiences of having acquired one or multiple concussions.
Using Focus Groups to Examine Oral Health Concerns in Community-Dwelling Individuals Living With Dementia and Their Care Partners: A Pilot Study
Nadia Kobagi, University of Alberta
Minn Yoon, University of Alberta
Dementia is a progressive disorder that affects thinking and memory. One of the most significant day-to-day impacts of dementia is the loss in ability to complete basic activities of living. Tooth brushing is a multistep task that individuals living with dementia often experience difficulty completing independently. The objective of this pilot study is to examine oral health practices and concerns of community-dwelling individuals living with dementia and their care partners to allow greater support for independent living. Five individuals with mild dementia and their care partners will be invited to participate that will trial a focus group method to gather insight into oral care practices and concerns. Participants will be recruited through partnership with the Alzheimer Society of Alberta & Northwest Territories. Two focus groups will be conducted separately but simultaneously: one group consisting of the individuals with dementia and one group of the care partners. Focus groups will be broken into two segments. The first portion will be discussion-based and will be guided by a series of semistructured questions. The second portion will use photographs and props where they will be asked to describe their experiences using such props during their daily care routine. Variances are expected to emerge when using focus groups that will help elucidate how this method can be used when studying experiences of a population with cognitive impairment. Additionally, this study hopes to find out how focus groups, visual aids, and props can assist this population in discussing a task-related activity of daily living.
Work-Based Learning in the Neo-natal Intensive Care Unit Following a Major Hospital Restructure
Julia Kryluk, McGill University
Samer Faraj, McGill University
Peter Nugus, McGill University
Karla Sayegh, McGill University
Health professions education research mostly emphasizes cognitive learning in formal settings, marginalizing tacit learning in work-based practice. Through informal processes of socialization, new employees are inducted into a new workplace culture. When two workplace cultures merge epistemic barriers are created and knowledge sharing can become difficult. While much health organizational research has focused on culture, little is known about how actors in a recently merged culture integrate new actors through moment-to-moment activity, recognized as work-based learning. This ethnographic study investigates a large-scale university hospital merger in which five institutions amalgamated forming one “super-hospital.” The two pre-existing neonatal intensive care units sampled here, which formed a single unit, were dramatically different in terms of acuity of patient population and corresponding nursing practices. The research draws on over 40 hr of unobtrusive observation and 24 semistructured interviews. All data were transcribed and thematically analyzed. In response to the merger, staff found work-arounds to make up for large nursing shortages and to induct new nursing employees into the acute and ever-changing work culture. Their formal training program underwent changes including a reduction from 10 weeks to 6 weeks, placing greater emphasis and need on “on-the-job” learning in order to manage a greater range of patient conditions. Nurses originating from one of the two merged hospitals were not given adequate formal training for all patient populations owing to a lack of resources. Work-based learning in this case played a large role in augmenting previous nurses’ skills in order to meet each others’ expectations in the new learning environment.
An Autoethnographic Account of How Weight Stigma Affects Physical Activity Behaviors
Angela Lambert, University of Calgary
Weight stigma, the devaluation of individuals perceived to be overweight, can act as an obstacle to participation in health-positive physical activities. I use an analytical autoethnographic methodology to examine how my experiences with weight stigma and changes in body sizes influenced my relationship with physical activity. From this analysis, I conclude that my relationship with physical activity has changed as my relationship with my body change. As my body size moved further from the social ideal, my emotional distress became an obstacle to physical activity. I was only able to repair my relationship with physical activity through a perspective of size acceptance. Additionally, I position my personal views at various stages of my life within a spectrum of social–cultural views on weight and exercise. I illustrate these public narratives using Internet memes as cultural artifacts. This autoethnography aligns with similar research implying that the cultural and medical stigmatization of weight not only damages the mental health of individuals who live in larger bodies but also paradoxically pushes these individuals away from health-positive behaviors. Therefore, the social practice of size shaming may be more likely to contribute to the “obesity epidemic” than to prevent obesity and promote good health.
Considering Culture in International Medical Education: A Role for Critical Narrative Analysis
Lerona Dana Lewis, McGill University
Yvonne Steniert, McGill University
Previous research showed that culture is a very important part of the experience of medical educators who work internationally. Western medical educators often report feeling ill-prepared for the differences in medical practices, the impact of gender, and the distinctions between the roles of physicians and nurses. This article advances a critical narrative analysis approach in which international medical educators could explicitly account for cultural differences in their preparation, implementation, and evaluation in cross-cultural settings. Narrative analysis is currently used in many aspects of medicine including nursing, patient care, and in the medical curriculum. The use of narrative analysis retains ambiguities of stories so that no single version is privileged. In international medical education, the use of critical narrative analysis offers the potential for holistic approaches where perspectives of both participants and facilitators can be included from the planning to the evaluation. This article is focused less on the theory of critical narrative analysis and more on its application in cross cultural settings. The author argues that the use of critical narrative analysis presents opportunities to move beyond the common tropes of cultural differences between Western medical education and medical education in other regions and countries. Using critical narrative analysis medical educators could account for the transference of cultural meanings.
Analyzing Emotive Narratives in Human–Computer Interaction: Methodological Implications Related to Mild Cognitive Impairment
Joan Soo Li Lim, University of Toronto
Cristina Leone, University of Toronto
The iPad app InTouch was originally designed to be an accessible, private mode of communication for cognitively healthy older adults struggling with social isolation due to chronic pain. More recently, it was introduced to a sample of 14 senior participants, of whom 10 have mild-cognitive impairment (MCI). MCI poses a challenge in the learning of new technology, but past findings regarding narrative memory suggest that more emotionally meaningful memories are more likely to be preserved in spite of cognitive impairment. As such, we aim to explore emotive narratives related to our participants’ learning of InTouch. The present study consists of four components: firstly, a literature review focusing on the relationships between emotive cognition, narrative memory, affective human–computer interaction (HCI), and MCI-related factors; secondly, a narrative analysis of the impact of InTouch on the participants’ social connections; thirdly, an affective HCI analysis of the participants’ emotional experiences learning and using InTouch; and finally, the development of corresponding new analysis frameworks that take MCI into account. Our next steps include the collection and analyses of further data such that a content analysis can be performed to confirm similarities and differences between MCI and non-MCI narratives. We intend to expand and apply our new frameworks based on these findings in order to maximize the capacity to both reliably capture seniors’ emotive experiences with InTouch and work towards improving those experiences and subsequently their social connectedness.
Wading in to a Deeper Dive into Qualitative Research: Innovative Strategies to Facilitate Graduate Students’ Learning
Donna Martin, University of Manitoba
Christina West, University of Manitoba
Elaine Mordoch, University of Manitoba
Roberta Woodgate, University of Manitoba
Two innovative teaching strategies designed to facilitate graduate students’ learning about qualitative research will be described. “Wading in” refers to an introductory assignment in a qualitative research methods course. Students read the novel The Help. Within a seminar format, students share their interpretations of the protagonist’s dilemmas through collecting, documenting, and disseminating the characters’ stories. Students work in pairs to identify strategies to ensure methodologically and ethically sound qualitative research. The class chooses one concept depicted in the novel for the purpose of exploring a classmate’s interpretation of that concept. Students and faculty cocreate a semistructured interview guide. Students use the guide to conduct an audio-recorded interview with one classmate, transcribe the audio-recording, and analyze the transcript. The analyzed transcript and a scholarly paper documenting the iterative process of data collection and analysis are submitted. “Deeper dive” is a funded, faculty-mentored learning experience for six graduate students at the 2016 Qualitative Health Research (QHR) Conference. Graduate students were invited to submit a letter of intent and abstract about a proposed qualitative study, which were reviewed independently by four faculty members. Applicants whose abstracts were rated as most scholarly were offered an opportunity to participate, with the requirement that the graduate student be a presenter at QHR. Students also committed to planning a community of practice qualitative research event with faculty mentors following QHR. We share a summary of student and faculty feedback about “wading in” and welcome suggestions about strategies to support the continued development of future qualitative researchers.
“A Challenging Environment”: Facilitators’ Perspectives on Emotionally Distressing Disclosures Within Breast Cancer Support Groups
Michelle McCowan, University of Calgary
Participants in professionally led cancer support groups are encouraged to share their personal challenges related to illness and recovery as well as their feelings of distress and/or loss of control. However, it is not yet known how sharing highly emotional and distressing content within a cancer support group may affect the listeners, that is, the other group members. While the consequences of secondary trauma (being exposed to details of another person’s emotionally distressing experiences) have been studied extensively among care providers (e.g., counselors and nurses), no research to date has explored how cancer patients experience and manage intense or unexpected disclosures within support group sessions. This study aims to answer the following: What do professional facilitators have to say about breast cancer patients’ experiences of hearing emotionally distressing disclosures in a support group setting? Semistructured interviews were conducted with three psychosocial oncology professionals at the Tom Baker Cancer Centre (Calgary, AB) who have facilitated breast cancer support groups. Interviews were analyzed according to Braun and Clarke’s (2006) thematic analysis procedure to identify and interpret patterns of meaning in professionals’ responses. Identifying key themes in facilitators’ understandings of this issue serves to (a) draw attention to the challenges associated with unexpected disclosures in group support settings and (b) elucidate new opportunities to learn from patients’ ability to manage and overcome these challenges. Additional implications for facilitating and researching support groups in health-care settings are presented.
The Impact of Breast Reconstruction Using the Latissimus Dorsi Muscle on Function and Activities of Daily Living: In-Depth Interviews With Women and Their Significant Other
Joseph G. McVeigh, Institute of Nursing and Health Research, Ulster University
Eilis McCaughan, Institute of Nursing and Health Research, Ulster University
Iseult M. Wilson, Institute of Nursing and Health Research, Ulster University
Due to increased survival rates, more women and their families are living with the consequences of breast cancer treatments for longer. Those women who undergo reconstructive surgery following mastectomy may experience more long-term side effects compared with those who undergo mastectomy alone. Latissimus dorsi (LD) breast reconstruction is one of the most widely used methods of reconstruction and a common complication following reconstruction is shoulder dysfunction. The aim of this study, therefore, was to determine the impact of breast reconstruction surgery using the LD muscle, on function and activities of daily living (ADLs), from both the woman’s perspective and their identified “significant other.” Four dyads were recruited from charities and special interest groups within Northern Ireland and interviewed separately. The women also completed a demographics questionnaire. The dyad relationships included: a civil partnership, two husband and wife couples, and a sister–sister relationship. Inductive content analysis was used to analyze the transcripts and develop core themes and subthemes. The overarching theme to emerge from the data was “managing expectations.” Three subthemes emerged from the women’s data: the “significance of support,” the “relative importance of outcomes” relating to surgery, and a “responsibility for their own aftercare.” Three subthemes also emerged from the significant others’ data: “support and information needs,” “managing the home and caretaking,” and “adapting to changes” following surgery. The findings from this study demonstrate that breast reconstruction using the LD muscle has an impact on function and ADLs for women, with that impact often extending to the wider family.
Exploring Pakistani, Urban, Muslim, Middle-Aged Women’s Experiences of Menopause Using Focused Ethnography
Amynah Mevawala, University of Alberta
Background: Women generally experience a number of physiological changes in their middle age. These are mainly related to the pre-, peri-, and postmenopausal symptoms that have an impact on their physical and psychological well-being as well as the general quality of life. Midlife women from diverse cultures differ in behaviors, values, and beliefs related to their life experiences as well as ways to manage menopausal symptoms. Along with accessing modern health-care services, Pakistani women commonly use natural ingredients such as honey, garlic, and lemon and practice mind and body therapies such as yoga, aerobics, and meditation. A combination of modern medicine and self-care practices tend to be used to promote health and prevent disease. There is limited research in the Pakistani context (Anwar et al., 2015) of midlife women and the climacteric symptoms and strategies used to manage menopause. Objective: This doctoral research study aims to explore Pakistani, urban, Muslim midlife women’s experiences of menopause and to acquire a deeper understanding of menopause and associated management strategies. Method: Focused ethnography research design will be used for the study. It will guide and inform an understanding of the experiential knowledge of midlife women in a specific cultural context. Recruitment of a minimum of 20 Pakistani, Muslim women will be facilitated through health clinic professionals, community leaders, and trustworthy associates of the participants, all residing in urban Karachi. One to two in-depth, semistructured interviews will be conducted in order to contribute to an exploratory study of experience related to the management of menopausal symptoms, use of biomedical interventions, and self-care practices. Mandatory and appropriate ethical considerations will be followed throughout the study. ATLAS.ti qualitative data management software will be used to manage the obtained data. Thematic analysis will be used to analyze the data. Theory of intersectionality will align with thinking deeply about data analysis, interpretation, and implications of the findings. Cross-cultural literature on menopause and midlife women will be used to focus on specific identified concepts that may emerge as relevant to the work. Result: This study will be significant in understanding Pakistani middle-aged women’s experiences of menopause and the management strategies they use. Little research has been conducted on middle-age women during this life changing process, especially in Pakistan. Conclusion: Through this study, nurses and allied health-care providers will be better equipped to care and advocate for women experiencing menopause in a Pakistani urban context.
Understanding of Stigma Associated With Substance Abuse in Iran: A Grounded Theory Study
Alireza Momeni, University of Eastern Finland
Stigma is identified as a major barrier to recovery from some health problems. Substance abuse is more highly stigmatized than other health conditions. Despite a large literature on the topic, the concept of the substance abuse stigma remains poorly understood in Iran. The present study aimed to explore stigma associated with substance abuse in the social, cultural, and ideological context. A qualitative approach was employed using in-depth interviewing with a purposive sample (N = 30, 17 male, 13 female) of currently abstinent drug abusers and health professionals from the three rehabilitation centers in Tehran. Data analysis was conducted by using the constant comparative method. The results of the study revealed the following categories: Public attitude, socially constructed images, Hierarchical interactions, identity conflict, and coping strategies. The finding can provide information to social scientists, health authorities, and policy makers to deeply understand the phenomenon, it can additionally facilitate the planning of the efficient strategies to combat.
Co constructing A Complex Narrative Using Constructivist Grounded Theory
Sarah Morey, Northumbria University
Alison Steven, Northumbria University
Pauline Pearson, Northumbria University
This study explores patients’ perceptions of the health-care assistant within U.K. secondary care. Employing constructivist grounded theory, 20 patient interviews were coded and analyzed using constant comparison to ensure findings were grounded within the data. Data were collected in a large teaching hospital in England between 2014 and 2015. Charmaz’s (2014) grounded theory methodology is underpinned by a constructivist paradigm in which there is recognition of multiple social realities. This was a suitable methodology for capturing the complexities of patienthood and the associated social world and it also supported co construction between researcher and participant. Charmaz’s (2014) guiding principles of intensive interviewing within a semistructured interview schedule helped to ensure that data collected were congruent with a constructivist perspective on co construction. Researcher positionality has the potential to impact upon the co construction of realities, influencing the data collection and subsequent analysis from what is known or not known by them as researcher. Reflection and reflexivity are necessary elements in constructivist grounded theory to understand more deeply how this co construction is made and to ensure transparency of decisions. In addition to traditional methods of journaling and memoing the researcher used a mind-map software package to ensure complexities within the narrative were not lost and to map researcher influences and perceptions as the data analysis took shape. This approach enabled the researcher to present an auditable trail of influences, decisions, and complexities within the findings. This article will address the reflexive journey undertaken by the researcher.
A Grounded Theory Describing the Process of Cultivating Compassion Among Undergraduate Nursing Students
Suzanne Nicolas, College of Nursing, University of Manitoba
Christina West, University of Manitoba
Michelle Lobchuk, University of Manitoba
Throughout four-year Baccalaureate of Nursing (BN) programs, students are taught about the general importance of having empathy for those they serve. However, nursing students do not receive formal education on compassion cultivation of which empathy is an integral part. Presently, little is known about the impact of compassion cultivation education on undergraduate nursing students. The purpose of this proposed study is to explore how cultivating a compassionate heart and mind set can potentially facilitate the student nurse’s entry into practice. A grounded theory research approach will be used to develop theory about this phenomenon. The setting for the study will be a four-year BN program located in a Western Canadian university. Purposive and theoretical sampling will be used to recruit fourth year undergraduate nursing students. Participants will complete an 8-week compassion cultivation course based on the Stanford University Compassion Cultivation Training protocol. Students will complete one semistructured interview 1 month following the course, which will be audio-recorded and transcribed verbatim. Participant observation of students will be completed during the course. Data collection and data analysis will occur simultaneously. Line by line coding, categorizing, constant comparative analysis, diagramming, and reduction will form the basis for theory generation. Further, the ongoing theoretical analysis will be developed through memo writing. Ethical considerations will be addressed throughout every step of the research process, including informed/process consent and confidentiality. The generation of theory from this study will inform curriculum and pedagogy pertaining to bachelor of nursing education as well as other interdisciplinary health professional educational programs.
Reformation of Nursing Management and Nursing Practices: A Study of a Nursing Director’s Work
Yumi Nishimura, Tokyo Metropolitan University
Hiroki Maeda, Tokai University
Nursing practices in hospitals change significantly when the director of a nursing service department is replaced. The purpose of this study is to describe how nursing management and nursing practices at one hospital were reformed, by analyzing the new nursing director’s narrative and practices from a phenomenological perspective. The research was carried out in an acute care hospital. Fieldwork and unstructured interviews were conducted for 3 years. The research plan was reviewed and approved by the ethics committee. The nursing director introduced a new policy involving a culture of openness and promoted the idea that every medical staff member should express their opinions to her frankly. She proposed some new projects with assistant nursing directors. These proposals were divided into three types: problem presentation, leadership, and proposing and waiting for reactions. Her proposals led to a variety of responses from the head nurses. The autonomy of the head nurses was encouraged through these interactions and the proposals were implemented. The nursing director became more able to make practical decisions through the sharing of information with various members of the medical staff. The new policy enabled the sharing of information and percolated through to every nurse in the hospital. The management style of the nursing director consisted of taking a step back and encouraging the autonomy of the head nurses. This study clarifies one way of reforming nursing management and nursing practices by changing the nursing director.
Peter Coyle Place: A Case Study of an Innovative Supportive Housing Approach for Older Adults
Lara Nixon, University of Calgary
Victoria Burns, Urbanisation Culture Société Research Centre, Institut National de la Recherche Scientifique
Neil Drummond, University of Alberta
Canada’s urban homeless population is growing with disproportionately increasing numbers of older adults who often “fall between the cracks.” Homelessness strategies emphasize rapid rehousing self-sufficiency models, such as housing first, while aging policies and programs prioritize age-friendly approaches that cater to conventionally housed adults. While it has been recognized that older homeless adults have extra housing and health needs, there is little understanding of alternative housing models that cater specifically to this population, particularly in a Canadian context. This case study redresses this gap by exploring the “age-friendliness” of Peter Coyle Place (PCP), an innovative supportive living facility in Calgary, Alberta, for adults 55 years and older who are unable to access traditional seniors’ housing. Drawing on our frontline work in family medicine and social work, and an age-friendly cities framework, this study aims to answer the following research questions: (1) How “age-friendly” is Peter Coyle Place? (2) What are some of the opportunities and constraints for older adults residing at Peter Coyle Place? (3) and What are the best practices and recommendations to inform the development of age-friendly housing and care models for older homeless adults? Data collection will include in-depth interviews with older residents and service providers, both at PCP and at referring agencies. Analysis will employ a constructivist grounded theory approach. The findings from this phase will inform a larger scale implementation and evaluation proposal, with aims to ensure that policies and programs are adapted to meet the needs of older homeless adults in urban centers across Canada.
What Constitutes Credible Knowledge in Practice-Related Decision Making? The Insights Into Knowledge Translation in Addiction Treatment Agencies in Canada
Gabriela Novotna, McMaster University
Maureen Dobbins, University of Toronto
Joanna Henderson, University of Toronto
Susan Jack, University of Toronto
Wendy Sword, University of Toronto
Alison Niccols, University of Toronto and McMaster University
Research suggests that some professionals working in addiction agencies in Canada draw heavily on their personal recovery experience when making their practice decisions. The purpose of this study was to describe the role of personal recovery experience in administrators’ practice-related decision-making. A qualitative study involving 23 administrators of Canadian addiction agencies was conducted. The interviewed administrators incorporated their personal recovery experience into (a) clinical decisions; (b) staff supervision and in-service training; (c) program planning, development, and administration; and (d) community service planning and policy-making. The findings of this study provided in-depth understanding of the role of personal addiction and recovery experience in executive directors’ decisions and suggested the spectrum of practice-related situations in which these experiences are used. Future developments in research on knowledge translation should address the complexity of practice-related decision-making of administrators with personal experience of addiction or recovery and explore the credibility attributed to difference sources of knowledge.
Maintaining a Dialogue and Confidentiality in Qualitative Research: On Methodological Choices
Gabriela Novotna, McMaster University
Maureen Dobbins, McMaster University
Wendy Sword, McMaster University
Alison Niccols, McMaster University
The purpose of this presentation is to discuss the methodological choices made to explore evidence informed decision-making of administrators with personal addiction or recovery experience working in addiction agencies serving women with substance use issue in Canada. Administrators are important in adopting evidence informed practices as they have more power than frontline service providers to make changes in organizations. The presentation will show how dialogue among the participants across different geographical regions can be effectively facilitated without compromising the confidentiality of data or revealing their identities. The purpose of the Delphi study was to outline and to agree on the directions for developing knowledge translation for evidence informed practice that would be tailored to service providers working in substance abuse treatment services who themselves experienced addiction or have been in recovery from addiction. We demonstrate the utility of the Delphi method for research that is primarily qualitative and exploratory.
Exploring Factors Influencing Recreation Participation for Children Living With Autism Spectrum Disorders
Lise Olsen, University of British Columbia, Okanagan
Rachelle Hole, University of British Columbia, Okanagan
Nichole Davies, University of British Columbia, Okanagan
Participation in recreational physical activity by children with autism spectrum disorder (ASD) is important for reasons of improving health, fitness, and quality of life; however, these children and their families experience challenges and barriers at multiple levels that influence their participation levels. This study aims to develop understanding about the factors influencing how families can promote safe, active recreation, and activity for their children with ASD and how communities can provide support and inclusive environments to assist families. Interpretive description informed by a socioecological perspective is being used to explore the views of parents and local service providers in relation to safe physical activity needs, barriers, and supports for children ages 3–12 years living with ASD and residing in Okanagan, B.C., communities. Data collection includes in-depth interviews with parents and providers. Steps of analysis include broad-based coding based on an initial analytic framework informed by concepts of stigma, inclusion, and safety perceptions and followed by identifying broader patterns in the data. Findings will be used to develop a thematic summary of the experiences, barriers, and supportive factors influencing how parents in Okanagan, B.C., communities engage with their children in recreational opportunities. Insights about how concepts of stigma, inclusion, and safety in family recreation will be addressed. The study results can be used to inform intervention planning efforts aimed at improving supports to help families of children with ASD engage in recreation in community settings.
Moral Distress in Oncology Nursing Practice: An Interpretive Description
Brenda Peters-Watral, University of Manitoba
Marie Edwards, University of Manitoba
Roberta Woodgate, University of Manitoba
Moral distress is an important phenomenon in oncology nursing practice with a limited but growing body of research demonstrating both high frequency and intensity. Informed by the literature on conflict, moral distress can be understood as an intrapsychic conflict with ethical dimensions that occurs secondary to social conflict. Negotiated order theory from a feminist inquiry lens provides a framework for understanding the structural origins of social conflicts that are implicated in the genesis of moral distress. This study will utilize an interpretive description approach to examine oncology nurses’ perceptions of the interaction between social conflict and moral distress in practice. Participants will be asked to describe their experiences with ethical concerns in practice, their perceptions of contributing factors in the organizational social context and their responses to those concerns and contributing factors. In person, telephone, or Skype interviews will be conducted with oncology nurses recruited via e-mail through the Canadian Association of Nurses in Oncology. Inclusion criteria for participants include active nursing practice in the provision of care to persons with cancer, in direct care or administration, practice located in Canada and English-speaking. The findings of this study will inform education for health-care students and practicing professionals on approaches to reducing conflict and ethical distress in practice.
Stakeholder Provider Perspectives on the Recognition and Documentation of Postoperative Delirium: A Situational Analysis
Novelette Prosper, Medical University of South Carolina/Ralph H. Johnson Medical Center
Charlene Pope, Medical University of South Carolina
Ralph H. Johnson, VA Medical Center
Although postoperative delirium is a common complication of surgery, it is underdocumented in the medical record, but the perspective of stakeholder providers on documentation is unknown. This study explored the experiences of stakeholder providers with postoperative delirium to understand the facilitators and barriers to documentation from their perspective.
Accessibility to Health Services and Opportunity of Early Diagnosis for Breast Cancer in Jalisco, Mexico: Women’s Descriptions of Conditions and Relationship
Igor Ramos Herrera, University of Guadalajara
Miguel Gonzalez, University of Guadalajara
Antonio Reyna, University of Guadalajara
Juan Robles, University of Guadalajara
Breast cancer is a severe threat to Mexican’s women health that is confirmed by the report of more than 5,000 women who died there in 2013 from this cause, and because it is one of the most frequently malignant tumors in people older than 20 years in the country. Early diagnosis has proven to be effective in detecting and treating cancer; it may even reduce mortality and improve patients’ survival. Although effective access to health services is crucial for early diagnosis, women play an important role at performing self-examination and finding early changes in their breasts; nevertheless, they still have to attend a health facility that offers mammogram and other confirmatory clinical studies. In Mexico, geographic accessibility to diagnostic services is not always accomplished because of differences in coverage between urban or rural areas as well as topographical disparities. Hence, in this work, we present the pilot test results of a study that describes what women diagnosed from breast cancer in the state of Jalisco think about geographic accessibility to cancer diagnostic facilities and how they think it affected their opportunity of receiving or not an early diagnosis. We intend that the final results help decision makers in understanding women’s viewpoint on this problem and deciding the best distribution for diagnostic facilities in the state.
Nursing Students Learning With Serious Gaming: A Grounded Theory Investigation
Julie Rivers, Loyalist College
Simulation-based learning employs several modalities and the current state of knowledge about appropriate modality for specific learning outcomes and curriculum integration strategies is still open to debate. The purpose of this grounded theory investigation is to develop an understanding of student experiences, perceptions, and recommendations regarding curriculum integration of “clinical nursing,” a suite of five avatar-based computer games. This research is exploring the integration of this learning activity into a baccalaureate nursing lab course. It is anticipated that data from this research will inform simulation-based learning design and ultimately improve curriculum integration and design features for effective learning. The researchers predict that codes, concepts, and relationships of this social/learning interaction will emerge from the data in order to inform curriculum integration and educational design theory. Preliminary results indicate that nursing students, who are not traditional gamers, found the first game challenging to complete. Of interest in the data is a concept that students perceived the game to prepare them for the high-fidelity lab simulation and this perception acted as a very strong motivator for persistence and engagement in subsequent games. Our goal is to continue the study with other nursing education courses to further inform and develop theory regarding gaming in nursing education.
From the World to the Prairies: Internationally Educated Nurses Stories in Transitioning to Rural Manitoba
Michael Roach, University of Manitoba
Judith Scanlan, University of Manitoba
The proposed study is intended to provide insight into the experiences of internationally educated nurses (IENs) moving to rural communities in Manitoba. Many IEN’s experience challenges in integrating into the Canadian health-care system and rural areas generally have fewer supports for new Canadians. Narrative inquiry will be used to examine participants’ experiences and tell their story as they integrate into rural communities. Stories can provide insight for IENs interested in moving to rural communities. This study aims to answer the question, “what is the IEN’s experience transitioning to rural Manitoba?” and “what barriers and supports do IENs experience throughout their transition?” Five IEN participants will be selected who have been recently hired and integrated into the rural communities. Participants will be asked to keep journals reflecting on their experience integrating into their new community and employment setting. Semistructured, reflexive interviews will be conducted after 6 months and 1 year. Data will be analyzed using the identity development method to facilitate reflexive identification of barriers and professional growth. Where individual stories will be utilized to examine individual experiences, the researcher will narrate the story, connecting the individual concepts identified. Pseudonyms and camouflaging of contextual data will be used to maintain confidentiality. With the increasing shortage of nurses in rural Manitoba, this study can help IENs transitioning to rural communities learn from the experiences of their peers and assist employers in developing strategies to ease the transition for IENs, promoting ongoing recruitment and retention of this population.
Understanding Transitions and Adaptations of Rural and Remote Couples Living With Parkinson’s Disease
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.
Telling Who “We” Are: Negotiating Shared Family Identities in Therapy and Research
Marnie Rogers-de Jong, University of Calgary
I present my ongoing doctoral research, in which I use narrative methods to investigate how people develop shared identities, or a sense of “we-ness,” in close relationships. Identity studies often focus on how people define themselves as distinct individuals. Relational identities characterize who “we” are together, highlighting how people collectively define themselves and create an articulable sense of mutual belonging. Research suggests shared identities enable people to coordinate their actions and collaborate effectively. “We” identities have also been linked with relationship satisfaction for couples. Yet limited research has been conducted examining how partners and family members generate shared identities between them. I describe my ongoing data collection with families engaged in therapy at the Calgary Family Therapy Centre, through which I invite participants to discuss “we-building” moments with me; that is, moments contributing to a sense of mutual identity and closeness for family members. I outline my initial analysis, conducted using narrative and discourse perspectives. I highlight my interest in how families define themselves (i.e., the stories they tell about family identity) as well as how they negotiate those definitions with one another, with their therapist, and with me as research interviewer (i.e., the storytelling processes through which family identities are generated and maintained). I conclude by offering implications for researchers, therapists, and families seeking to encourage we-building interactions.
Evaluation of Vancouver Coastal Health’s Second Generation Strategy for the Downtown Eastside (DTES): A Population Health Intervention Study
Neale Smith, University of British Columbia
Bohdan Nosyk, Simon Fraser University
Kehinde Ametepee, Simon Fraser University
Michelle Olding, BC Centre for Excellence in HIV/AIDS
Craig Mitton, University of British Columbia
The fragmented delivery of health and support services to vulnerable populations with complex health and socioeconomic needs has been shown to lead to suboptimal health outcomes and further engender health inequity. To address this gap, Vancouver Coastal Health (VCH) has made integrated comprehensive care delivery among the cornerstones of its second-generation strategy (2GS) for Vancouver’s Downtown Eastside (DTES) residents—a population that has been widely researched on account of its complex and adaptive issues such as physical and mental health, drug use, and homelessness. A planned qualitative analysis of systemic integration for ongoing systematic monitoring will provide a powerful basis for evidence-based decision-making in guiding the 2GS. This research focuses on health systems, organization, and policy-level issues of integration among care services. The study will assess the roles and responsibilities of both policy makers and health-care service providers, formal and informal linkages between service providers, and practices of service integration. Semistructured interviews of VCH managers and leaders of contracted and funded service agencies and a web-based social network analysis instrument will be employed to establish an in-depth understanding of the processes and pathways by which the various services comprising the DTES network of providers of health care and support services interact. This qualitative analysis, along with a quantitative assessment of key indicators within the DTES, will inform the design of a resource allocation framework thus enabling 2GS-limited resources to be allocated in a manner which best meets organizational and system level objectives to improve health outcomes for this marginalized population.
Conflicting Conversations: Using Grounded Theory to Understand Parent–Child Communication During Crises
Jezz Stone, University of Calgary
The recent wildfires in Fort McMurray forced thousands of individuals and families to evacuate their homes with little or no notice. Potentially traumatic events such as this can have lasting effects on children, but little is known about how parents help their children navigate these events through their use of communication. Understanding how parents maneuver these challenges can provide insight to supporting families though crises in therapy and aid efforts, such as the Fort McMurray evacuations. This pilot study examines how parents communicate with their children during a crisis, specifically looking at their rationale behind what was said. Semistructured interviews were conducted with three parents affiliated with the University of Calgary. Using grounded theory, transcriptions of the interviews were coded for themes revealing prominent parenting tactics, such as trying to protect children. Findings suggest that parents have strategic reasoning for choosing to tell their children nontruths during crisis events.
The Patient’s Story of Health: A Meta ethnography of How Nurse–Patient Relationships Can Enhance Patients’ Health
Maria Strandås, Nord University
Terese Bondas, Nord University
High-quality nursing is dependent on nurse–patient relationships, and this relationship is seen as the very foundation of nursing. The quality of the relationship affects patients’ experience of, and benefit from, treatment and care. The nursing profession is under increasing pressure from management and control systems having a sharp focus on efficiency and economy. With increasing cost cuts and quantitative measurements of nurses’ time, the New Public Management era is involved in shaping the culture that forms the basis of nurse–patient relationships. The purpose of this metaethnography is to synthesize qualitative evidence and knowledge from published research to contribute to theory development and enhance our understanding of how nurse–patient relationships can improve patient’s health. A metaethnographic study using Noblit and Hare’s interpretative approach is conducted. Included studies use various qualitative methods and the data include insider perspective. The quality of studies included are checked using CASP Qualitative Research Checklist. By synthesizing studies including both nurses’ and patients’ experiences this metaethnography will provide a salutogenic perspective on the nurse–patient relationship as a factor that supports patient health and well-being. The metaethnography is part of a larger fieldwork study investigating nurse–patient relationships in home health care, in a health-care system where organizational arrangements, economic restraints, and efficiency are top priority in health policies. By demonstrating experiences and perspectives of patients and nurses, the various meanings of nurse–patient relationships in time and space in relation to the patient’s story of health will emerge. Thus, we will attain new knowledge to develop these relationships.
Collecting Data in Zambia While Working in Canada—Using a Virtual Research Environment
Paisly Symenuk, University of Alberta
Kevin Challacombe, University of Alberta
James Doiron, University of Alberta
For all research involving humans, precautions must be in place to ensure confidentiality and privacy are being upheld to the highest degrees as supported by the Declaration of Helsinki. For a novice researcher, ensuring the confidentiality, privacy, and security of research data can be difficult, and this can be made even more challenging when conducting global health field research. Some unique challenges include the limited access to secure physical research space for the storage of sensitive information—including such things as identifiable consent forms and data—ensuring the secure encryption of devices and files and facilitating shared access for different users in different parts of the world. As a novice researcher conducting global health research in Zambia, I used an online, secure virtual research environment (VRE) called the “Health Research Data Repository” (HRDR). The HRDR is a secure and confidential VRE that supports health-related research projects. As an undergraduate researcher using this service, the HRDR served to mitigate the above challenges that I face by enabling the use of a secure and remotely accessible virtual research space physically located in Canada. The HRDR eliminates the need for encrypting devices and files as no data is ever stored on the user’s personal computer, while all the research files are securely uploaded through a secure portal where an HRDR employee receives the files and then confirms their receipt with an e-mail to the researcher. The HRDR provides major benefits for novice researchers, particularly for those conducting global health field research.
“No One Ever Asks How We’re Doing”: Using Qualitative Research With Siblings of Individuals With Disabilities
Kristina Trandovski, Laurentian University
Marilia J. Carvalho, Laurentian University
Shelley L. Watson, Laurentian University
The experiences of siblings who have a brother or sister with a disability are often overlooked, as the focus of “family research” is usually on the parents. Current research generally employs quantitative data or relies on parental accounts. However, very few studies use qualitative data and interviews directly with the sibling, which prevents a fuller understanding of the lived experiences of these individuals. The present study employs in-depth, semistructured interviews with individuals who have a sibling with fetal alcohol spectrum disorder, autism spectrum disorder, Down syndrome, cystic fibrosis, or cerebral palsy. Data collection is ongoing, but data thus was analyzed using interpretative phenomenological analysis, which revealed that these siblings do not typically have the opportunity to openly discuss their experiences of growing up with a sibling with a disability. Preliminary analysis reveals that participants expressed feelings of relief and discussed their hesitance to disclose concerns about their sibling to their family, due to feelings of guilt and fear of contributing to their parents’ burden. As their parents’ focus is generally on their sibling, these individuals cannot find desired supports, such as emotional support from family or friends, or formal services. Although participants reported variable degrees of distress, they also stated that the interviews provided a nonjudgmental and therapeutic environment where they could tell their story. This allowed them to feel acknowledged and alleviated some psychological or emotional distress. Lastly, by exploring the perspectives of siblings, a greater understanding can be obtained in order to tailor appropriate supports for this population.
Sibling Experiences in Families of a Child With Down Syndrome, Cystic Fibrosis, or Cerebral Palsy
Kristina Trandovski, Laurentian University
Shelley L. Watson, Laurentian University
Siblings emotionally influence each other throughout the life span, and for many, a sibling is a person’s first friend and most frequent contact. When a sibling has a disability, such as Down syndrome, cystic fibrosis, or cerebral palsy, this relationship may be different: the literature suggests that siblings of individuals with Down syndrome have positive experiences and perceive themselves as being better people because of their brother or sister; siblings of persons with cystic fibrosis also express positive feelings, but may feel neglected due to their parents’ focus on the health-care needs of their sibling; and siblings of individuals with cerebral palsy often report having a number of additional responsibilities, such as being their teacher or caregiver. The current study employs a mixed-methods approach, which allows participants to describe their experiences, including the hardships, rewards, and coping methods employed. Data collection is currently ongoing; however, preliminary interpretative phenomenological analysis of in-depth interviews suggests that siblings of individuals with Down syndrome find the experience rewarding and are willing to act as a future caregiver. Despite participating in daily treatments, siblings of individuals with cystic fibrosis see their sibling as “typical.” Based on the literature cited above, it is anticipated that siblings of individuals with cerebral palsy will describe more demands compared to the other sibling groups and reluctantly take on a caregiving role. The results of this study will provide a rich understanding of the experiences and needs of these siblings and will assist with the development of appropriate supports for families.
Does Health-Care Role Ambiguity Contribute to Hospital-Acquired Adverse Events?
Dawn Tymianski, Fielding Graduate University
Irrespective of the work established to improve patient safety during hospitalization, preventable medical error and adverse events remain a significant social and health-care concern. Research suggests the majority of error incidents are the result of human behavior, shaped by system variables such as the nature of the work or work environment. For this reason, a significant proportion of patient safety initiatives are approached from a systems level. Ultimately, the effectiveness of initiatives in error reduction is determined by the capacity of the health-care workforce enacting change. Workforce capacity is influenced by increasing health-care complexity and professional role demands. It is now expected that professionals hold multiple competing, complimentary or hybrid roles in administration, leadership, and clinical care. It is also common to find multiple professions, trained and educated differently, engaged in the same work. As professional roles become increasingly dynamic, the role(s) potentially become less descriptive, less predictive, exposing health-care delivery weaknesses or gaps in patient care provision. The purpose of this qualitative descriptive study was to deepen the understanding of role ambiguity and role perception across health-care professional groups working in a quaternary center. A total of 22 participants were invited to share their narrative experience of role through semistructured interviews. The findings will be presented. Exploration and understanding of role ambiguity can provide an evidence-based platform for professional conversation, improve professional collegiality, patient safety, and patient care outcomes.
Access to Primary Health-Care Services for Urban-Dwelling, Canadian Indigenous Women of Childbearing Age: An Integrative Review
Amy Wright, McMaster University
Olive Wahoush, McMaster University
Chelsea Gabel, McMaster University
Susan M. Jack, McMaster University
Many Indigenous people in Canada experience poor access to health services for numerous reasons. Access to primary health services has been linked to improved health outcomes and a reduction in health inequities. For childbearing women, primary health services are important to promote their own health and the health of their newborns. This is the first integrative review to critique and synthesize the literature regarding access to primary health services for Canadian Indigenous women of childbearing age living off-reserve in urban areas. A literature search resulted in 26 eligible studies. Data were evaluated using the Critical Appraisal Skills Programme checklists, reduced according to study design, and then coded. Codes were compared to produce themes using the access model of Fit (Penchansky & Thomas 1981). The results demonstrate that multiservice Aboriginal Health Access Centers facilitate access to health services, offer traditional medicine, and provide culturally appropriate care. Fear of judgment by health providers, and negative experiences with health providers, including encounters with racism, are barriers to accessing care.
Nurses are well positioned to make meaningful impacts to how Indigenous people access health services. Nurses can provide culturally appropriate nursing care, advocate for changes to health policy, including mandatory cultural training for health providers, and the inclusion of traditional medicine in mainstream services. Nurses should encourage Indigenous people to pursue health professional training, promoting health providers who are best able to care for other Indigenous people. Finally, nurse researchers can work with Indigenous communities to identify effective interventions to improve access to health services.
Qualitative Health Research Involving Indigenous Peoples: Culturally Appropriate Data Collection Methods
Amy Wright, McMaster University
Olive Wahoush, McMaster University
Chelsea Gabel, McMaster University
Susan M. Jack, McMaster University
Historically, health research involving Indigenous peoples has been fraught with problems, including researchers not addressing Indigenous research priorities and then subsequently often failing to utilize culturally appropriate methods. Given this historical precedence, some Indigenous populations may be reluctant to participate in research projects. In response to these concerns, the Government of Canada developed the Tri-Council Policy Statement (TCPS2): Chapter 9: Research Involving the First Nations, Inuit, and Metis Peoples of Canada, which stipulates the requirements for research collaborations with Indigenous communities. Utilizing the TCPS2 as an ethical standard for research practices, this article describes, critiques, and synthesizes the literature on culturally appropriate oral-data collection methods, excluding interviews and focus groups, for use with Indigenous people in Canada. Based on this rigorous review of the literature, photovoice, symbol-based reflection, circles, and story-telling have been demonstrated as methods of data collection that are both methodologically rigorous and culturally appropriate for use in research with Indigenous people in Canada. Further development of these methods, story-telling in particular, is warranted, as few details regarding their use exist in the literature. Researchers should continue to work with Indigenous populations to ensure methods are congruent with Indigenous ways of knowing and cultural practices.