Deborah O'Connor

Broadening the dementia debate : towards social citizenship

Part one: Citizenship in theory: Introduction Setting the context for broadening the debate The meaning and value of social citizenship Part two: Social citizenship in action: Thinking and talking differently Implications for health and social care practices Extending research practices Part three: Conclusion.

Toward Social Justice: Teaching Qualitative Research

Abstract Social work is committed to promoting social justice, inclusion and the empowerment of people. Qualitative research methods offer exciting possibilities for operationalizing this commitment. Drawing predominantly on constructivist and/or critical paradigms for understanding, qualitative research fosters a rebalancing of power within the researcher/researchee relationship and encourages a focus on marginalized understandings and experiences. More than this, it lends itself to an analysis of power. To realize the potential of qualitative research, however, requires more than just developing a knowledge base; it also requires integrating a different way of “being” as a researcher and social worker. Facilitating this learning process with social work students raises interesting challenges and opportunities. The purpose of this paper is to open for discussion ways for teaching qualitative research that allow the iterative, creative, and reflective practices required for effective qualitative research to develop. Drawing on our experiences teaching qualitative research and student feedback accumulated over the past five years, we discuss aspects of the course that have seemingly “worked” and others that have been less effective. The intent is to initiate a discussion around the ethics and pragmatics of teaching qualitative research.

Aging in a Foreign Country: Voices of Iranian Women Aging in Canada

ABSTRACT Older Iranian women, who immigrated to Canada in later adulthood, experience unique issues as they age. In order to better understand this experience, in-depth, personal and semi-structured interviews were conducted with five immigrant/refugee Iranian women who immigrated to Canada in their later life. Analysis revealed that although each womans story conveyed individual differences and idiosyncrasies, all the stories highlighted the critical interweaving of the aging experience and the immigration experience: neither experience could be understood in isolation of the other; each aspect gave meaning to the other experience. Two interrelated messages dominated the womens stories: first was the importance of each womans immigration story for grounding her experience of the aging process in Canada. Second, each womans personal story suggested that the immigration experiences were accorded priority for accounting for her experiences in Canada. Specifically, cultural identity (i.e., social class, education, religious affiliation and immigration status) offered a valuable cloak for overshadowing the force of the aging process and the aging process emerged as an elusive force that lurked in the background without ever being fully acknowledged or given power in their lives. The implications of these findings in relation to theory development on intersectionality and professional practice are discussed.

Toward Empowerment: ReVisioning Family Support Groups

ABSTRACT Family support groups (FSG) have been recognized as an important and viable means for responding to the needs of family caregivers. How these groups work, however, is not well understood. The purpose of this qualitative exploratory study was to explore the impact of attending a family support group on the caregiving experience from the perspective of the family member. Personal, semi-structured interviews took place with eleven family members who had participated in at least one FSG. Data was analyzed for themes, using a constant comparative categorizing strategy. This analysis suggests that attending a FSG impacts the caregiving experience in four important ways: helping the family member to construct a self-identity as a ‘caregiver’; promoting a sense of personal competence; fostering the use of formal support groups; and creating a community context within which to experience the caregiving role. Cumulatively, these have the potential to contribute to a sense of empowerment for the family member by helping him or her to reposition the caregiving experience as more than a personal issue and promoting the emergence of a more collective voice.

Journeying the Quagmire: Exploring the Discourses That Shape the Qualitative Research Process

In the struggles to have its legitimacy recognized, qualitative research has been framed as a singular entity understood in relation to quantitative research. This interpretation is now being challenged, resulting in the emergence of increasingly complex, frequently contradictory, and often unarticulated understandings of the goals and practices associated with qualitative research. This article chronicles the pragmatic and ethical struggles the author encountered as her own ideas, reflecting the developing status of qualitative research perspectives, gradually shifted during the process of conducting a doctoral study. The purpose is to open for discussion the implications associated with contradictory discourses around qualitative research.

Assessing capacity within a context of abuse or neglect

In 2000, with the implementation of Part III of the Adult Guardianship Act: Support and Assistance for Abused and Neglected Adults, British Columbia formally recognized the need to examine issues of decisional capacity of older adults within a context of abuse or neglect. Interestingly, however, although the test of capacity was clearly laid out under this piece of legislation, the potential influence that living in a situation of abuse or neglect may have on how the person makes decisions is not explicitly addressed. Similarly, this is a missing link throughout the literature discussing decisional capacity in older adults. This gap exists despite the fact that determining the “protection” needs of someone who is being abused and/or neglected often hinges directly on that persons decisional capacity. The purpose of this article is to examine the unique aspects associated with assessing and determining capacity for older adults who are living in a situation of abuse or neglect. The specific objectives are to: (a) examine how living in a situation of abuse or neglect may influence the determination of capacity and (b) explore the implications of conducting an assessment within a potentially abusive context. The legal notion of undue influence and the psychological concept of relational connection are introduced as potentially important for considering decision making within this context.

Dimensions of Power: Older Women's Experiences with Electroconvulsive Therapy (ECT)

ABSTRACT Older women are particularly prone to being treated for depression, and, despite the controversy surrounding it, electroconvulsive therapy (ECT) has gained popularity as a treatment with this population. Research has examined the physical and cognitive changes associated with ECT but there is little understanding regarding how older women themselves experience this treatment. In order to gain better understanding into the subjective experience of receiving ECT, this qualitative study explored the experiences of six older women who were treated with ECT for a diagnosis of depression, using in-depth personal interviews. Analysis suggests that this experience for these older women could not be understood in isolation. Rather, their stories highlighted the importance of interpreting the ECT experience within a broader context that included the larger depression experience, the dynamics of helping relationships, and the discourse available to them for sense-making. Specifically, the central theme underpinning all of these womens stories was the shifting of power from themselves to others. This paper examines how this occurred and discusses implications for practice.

Email as a Data Collection Tool when Interviewing Older Adults

This article explores several aspects of electronic communication, specifically its advantages and disadvantages within the context of a brief experience using email to interview elders. Two older adults participated via email as the psychosocial impact of aging was collected using such venue. Our experiences are compared with published reports from others to analyze the benefits and limitations of email as a research tool. The email was spontaneous, comprehensive, interactive, efficient, confidential, and cost effective. The use of email within this exploratory study appeared to be an effective approach to collecting qualitative information about beliefs and behaviours from older adults who feel comfortable with this form of communication. The lack of similar studies limited the scope of discussion and comparison of findings; generalization is limited due to the small sample size. This investigation, however, suggested that the use of email as an interview tool may be considered in todays exploratory research arena as an alternative to conference calls or face-to-face interviews when time is a constraint.

Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship

The importance of stigma in shaping the experiences of people living with dementia and challenging their social citizenship emerges repeatedly as a powerful and negative force. In a recent participatory action research (PAR) study focused on understanding what people with dementia need to know to live well, this link between stigma, discrimination and social citizenship emerged once again. A group of people living with dementia (n=8) met monthly for 16months to discuss their experiences and advise on the curriculum of a proposed self-management program. From the first introduction, stigma was identified as a defining feature of the experience of living well with dementia. This paper analyses this groups talk around stigma and discrimination, drawing attention to the critical role that diagnostic disclosure has in both positioning people with dementia in a stigmatizing way and, also, acting as a strategy of resistance that facilitates full social citizenship.