Rachelle Hole

Common Insights, Differing Methodologies Toward a Fusion of Indigenous Methodologies, Participatory Action Research, and White Studies in an Urban Aboriginal Research Agenda

In this article, we discuss three broad research approaches: indigenous methodologies, participatory action research, and White studies. We suggest that a fusion of these three approaches can be useful, especially in terms of collaborative work with indigenous communities. More specifically, we argue that using indigenous methodologies and participatory action research, but refocusing the object of inquiry directly and specifically on the institutions and structures that indigenous peoples face, can be a particularly effective way of transforming indigenous peoples from the objects of inquiry to its authors. A case study focused on the development of appropriate research methods for a collaborative project with the urban aboriginal communities of the Okanagan Valley in British Columbia, Canada, provides an illustration of the methodological fusion we propose.

‘It’s something that I manage but it is not who I am’: reflections on internalized stigma in individuals with bipolar disorder

Bipolar disorder (BD) is a complex chronic condition associated with substantial costs, both at a personal and societal level. Growing research indicates that experiences with stigma may play a significant role in contributing to the distress, disability, and poor quality of life (QoL) often experienced in people with BD. Here, we present a sub-set of findings from a qualitative study of self-management strategies utilized by high functioning Canadian individuals with BD. Specifically, we describe a theme relating to participants’ experiences and understandings of internalized stigma. Descriptive qualitative methods were used including purposeful sampling and thematic analysis. High functioning individuals with BD type I or II (N = 32) completed quantitative scales to assess symptoms, functioning and QoL, and participated in an individual interview or focus group to discuss the self-management strategies that they use to maintain or regain wellness. Thematic analysis identified several themes, including one relating to internalized stigma. Within this, four additional themes were identified: stigma expectations and experiences, sense of self/identity, judicious disclosure, and moving beyond internalised stigma. One of the more unique aspects of the study is that it involves a participant sample that is managing well with their illness, which differs from the norm in biomedical research that typically focuses on pathology, problems and dysfunction.

Working between languages and cultures: Issues of representation, voice, and authority intensified

In this article, the author examines how issues of representation, voice, and authority were intensified in a study conducted by a hearing researcher (the author) with culturally Deaf women who communicated in American Sign Language (ASL). First, a brief context of the original study is provided. Second, the collaborative narrative methods used are described. Third, some of the methodological implications of conducting collaborative narrative research across languages (English and ASL) and across cultures (hearing and Deaf) are explored. Finally, the author concludes with a short discussion of methodological implications arising from an exploration of how she chose to manage representational issues that occurred in her research across languages and across cultures.

Changing priority setting practice: The role of implementation in practice change

BACKGROUND Programme budgeting and marginal analysis (PBMA) is a priority setting approach that assists decision makers in choosing among resource demands. This paper describes and evaluates the process of implementing PBMA in a Canadian regional health authority, and draws out key lessons learned from this experience. METHODS Qualitative data were collected through semi-structured participant interviews (twelve post year-1; nine post year-2), meeting attendance, and document review. Interview transcripts were analyzed using a constant comparison technique. Other data were analyzed to evaluate PBMA implementation. RESULTS Desire for more clarity and for PBMA adaptations emerged as overarching themes. Participants desired greater clarity of their roles and how PBMA should be used to achieve PBMAs potential benefits. They argued that each PBMA stage should be useful independent of the others so that implementation could be adapted. To help improve clarity and ensure that resources were available to support PBMA, participants requested an organizational readiness and capacity assessment. CONCLUSION We suggest tactics by which PBMA may be more closely aligned with real-world priority setting practice. Our results also contribute to the literature on PBMA use in various healthcare settings. Highlighting implementation issues and potential responses to these should be of interest to decision makers implementing PBMA and other evidence-informed practices.

Improving care and wellness in bipolar disorder: origins, evolution and future directions of a collaborative knowledge exchange network

The Collaborative RESearch team to study psychosocial factors in bipolar disorder (CREST.BD) is a multidisciplinary, cross-sectoral network dedicated to both fundamental research and knowledge exchange on bipolar disorder (BD). The core mission of the network is to advance the science and understanding of psychological and social issues associated with BD, improve the care and wellness of people living with BD, and strengthen services and supports for these individuals. CREST.BD bridges traditional and newer research approaches, particularly embracing community-based participatory research (CBPR) methods. Membership of CREST is broad, including academic researchers, people with BD, their family members and supports, and a variety of health care providers. Here, we describe the origins, evolution, approach to planning and evaluation and future vision for our network within the landscape of CBPR and integrated knowledge translation (KT), and explore the keys and challenges to success we have encountered working within this framework.

Ageing Adults with Intellectual Disabilities: Self-advocates' and Family Members' Perspectives about the Future

Abstract Although the numbers of ageing adults with intellectual disabilities are increasing, current systems are ill-prepared to meet the unique needs of this population and research is needed to direct policies and practices aimed at supporting ageing adults with intellectual disabilities. This article presents the qualitative findings of research conducted in British Columbia (BC), Canada, which explored the future perspectives of 11 ageing adults with intellectual disabilities and 11 family members. Future concerns of the adults with intellectual disabilities included concerns for their ageing parents, for their future living arrangements, and about loneliness. Family members concerns centred on ensuring the future security of their loved one with an intellectual disability, addressing legal issues and financial security, and promoting future choice and self-determination. The results point to the importance of early and intentional planning that supports and balances the needs and desires of both ageing adults with intellectual disabilities and family members.

Visibility and Voice Aboriginal People Experience Culturally Safe and Unsafe Health Care

In Canada, cultural safety (CS) is emerging as a theoretical and practice lens to orient health care services to meet the needs of Aboriginal people. Evidence suggests Aboriginal peoples’ encounters with health care are commonly negative, and there is concern that these experiences can contribute to further adverse health outcomes. In this article, we report findings based on participatory action research drawing on Indigenous methods. Our project goal was to interrogate practices within one hospital to see whether and how CS for Aboriginal patients could be improved. Interviews with Aboriginal patients who had accessed hospital services were conducted, and responses were collated into narrative summaries. Using interlocking analysis, findings revealed a number of processes operating to produce adverse health outcomes. One significant outcome is the production of structural violence that reproduces experiences of institutional trauma. Positive culturally safe experiences, although less frequently reported, were described as interpersonal interactions with feelings visibility and therefore, treatment as a “human being.”

Comparison of community residential supports on measures of information & planning; access to & delivery of supports; choice & control; community connections; satisfaction; and, overall perception of outcomes

BACKGROUND This paper reports on some of the findings of a large-scale survey (n = 852) of family members and support staff of adults with intellectual disabilities receiving community living services in British Columbia, Canada, concentrating on comparison of outcomes across four types of community residential settings: group homes, family model homes, independent home or apartment, and family home. METHOD Comparisons were conducted on six domains: information and planning; access to and delivery of supports; choice and control; community connections; satisfaction; and, overall perception of outcomes. Where applicable, further multivariate analyses were undertaken to determine the effect of the degree of help required by the residents and the respondent type. RESULTS Findings indicate that on all measures other than choice and control, group homes and family model homes showed better outcomes than either independent settings or family homes. CONCLUSION The findings may indicate that the move to more independent living settings is not being accompanied by appropriate supports.

Creativity and Bipolar Disorder Igniting a Dialogue

Bipolar disorder (BD) has been related to heightened creativity, yet core questions remain unaddressed about this association. We used qualitative methods to investigate how highly creative individuals with BD understand the role of symptoms and treatment in their creativity, and possible mechanisms underpinning this link. Twenty-two individuals self-identified as highly creative and living with BD took part in focus groups and completed quantitative measures of symptoms, quality of life (QoL), and creativity. Using thematic analysis, five themes emerged: the pros and cons of mania for creativity, benefits of altered thinking, the relationship between creativity and medication, creativity as central to one’s identity, and creativity’s importance in stigma reduction and treatment. Despite reliance on a small sample who self-identified as having BD, findings shed light on previously mixed results regarding the influence of mania and treatment and suggest new directions for the study of mechanisms driving the creative advantage in BD.

Community dental clinics: providers' perspectives.

OBJECTIVES Not-for-profit community dental clinics attempt to address the inequities of oral health care for disadvantaged communities, but there is little information about how they operate. The objective of this article is to explain from the perspective of senior staff how five community dental clinics in British Columbia, Canada, provide services. METHODS The mixed-methods case study included the five not-for-profit dental clinics with full-time staff who provided a wide range of dental services. We conducted open-ended interviews to saturation with eight senior administrative staff selected purposefully because of their comprehensive knowledge of the development and operation of the clinics and supplemented their information with a years aggregated data on patients, treatments, and operating costs. RESULTS The interview participants described the benefits of integrating dentistry with other health and social services usually within community health centres, although they doubted the sustainability of the clinics without reliable financial support from public funds. Aggregated data showed that 75% of the patients had either publically funded or no coverage for dental services, while the others had employer-sponsored dental insurance. Financial subsidies from regional health authorities allowed two of the clinics to treat only patients who are economically vulnerable and provide all services at reduced costs. Clinics without government subsidies used the fees paid by some patients to subsidize treatment for others who could not afford treatment. CONCLUSIONS Not-for-profit dental clinics provide dental services beyond pain relief for underserved communities. Dental services are integrated with other health and community services and located in accessible locations. However, all of the participants expressed concerns about the sustainability of the clinics without reliable public revenues.