En France, la loi Kouchner (2002) a permis de repenser les droits des patients et a introduit la notion de démocratie sanitaire. En cancérologie, les associations de patients et (ex-)malades ont commencé progressivement à jouer plusieurs rôles (soutien et informations aux malades, représentation dans les institutions de soins et les agences d’État, enseignement auprès des soignants et participation à la recherche). Certains patients choisissent même d'en faire leur métier : c'est cette professionnalisation qui nous intéresse. Nous proposons ici de discuter des premiers résultats de deux recherches en cours sur le sujet.

The Assisted Human Reproduction Act seeks to protect egg donors’ health and well-being and prevent trade in their reproductive capabilities. In order to fulfill these objectives, the Act prohibits the buying and selling of ova, and only allows for egg donors to be reimbursed for their expenses. However, no regulations setting out what expenses can be reimbursed were promulgated. Sixteen years later, these long-awaited regulations finally came into force in June 2020. In this study, I rely on data from interviews with sixteen egg donors in order to assess how the new regulations might help or hinder concerns that egg donors have with how egg transactions are regulated in Canada. I argue that the new regulations might hinder, more than help with, addressing current concerns related to egg transactions in Canada. The most likely result is that they will not change the current state of affairs.

In May 2012, a former research assistant contacted the Montréal police about an interview he had conducted with Luka Magnotta for the SSHRC-funded research project Sex Work and Intimacy: Escorts and their Clients four years previously. That call ultimately resulted in the Parent and Bruckert v R and Magnotta case. Now, a decade later, we are positioned to reflect on the collective lessons learned (and lost) from the case. In this paper, we provide a lay of the Canadian confidentiality landscape before teasing out ten lessons from Parent c R. To do so, we draw on personal archives, survey results from sixty researchers, twelve key informant interviews with qualitative sociolegal and criminology researchers, and documentary analysis of university research policies. The lessons, which range from the clichéd, to the practical, to the frustrating, have implications for the individual work of Canadian researchers and for the collective work of academic institutions.

COVID-19 has had a devasting impact on older adults in Canada, including persons living with dementia. This intrinsic case study sought to understand the perceptions of persons living with dementia regarding how COVID-19 has impacted their well-being. Ten persons living with dementia participated in in-depth qualitative interviews about their experience with COVID-19. Using thematic analysis, four themes were identified: (1) expressing current and future concerns; (2) social connections and isolation; (3) adapting to change and resilience through engagement and hope; and (4) we’re not all the same: reflecting individual experiences of the pandemic. Results highlight that while COVID-19 contributed to isolation, concerns, and frustrations, persons with dementia also demonstrated adaptation and resilience. This study reinforced that persons with dementia and their responses to challenges are unique. Therefore, interventions to support persons with dementia must also be individualized to each person’s abilities and circumstances.

This qualitative descriptive study presents the experience of an abrupt disruption of daily activities among community-dwelling older adults during the early months of the COVID-19 pandemic. Sixteen older adults (age: 71 ± 6.4) were interviewed in April–June, 2020. Five themes were identified: (1) Understanding and applying COVID-19 guidelines: guidelines were clear and participants adhered closely to them, motivated mainly by fear; ageing-specific guidelines are needed. (2) Daily life during lockdown: the abrupt occupational disruption was managed by transitioning to virtual activities, and/or performing more activities at home. New daily activities were generally more sedentary and less meaningful. (3) Social context: family assistance aroused mixed feelings, as it compromised independence; limited compliance at the community level created stress. (4) Mood and affect: mood often fluctuated, and participants employed various coping strategies. (5) Aging: participants became more aware of their age and were concerned about negative health implications of adherence to COVID-19 guidelines.

Although friendship is vital in later life, particularly amongst people who are living with dementia, little is known about how friendships are sustained following a diagnosis. Some research suggests that, because of dementia-related stigma, friendships dissolve following diagnosis; however, other researchers have shown that friendships can persist in dementia. The purpose of this article is to explore strategies that people with dementia and their friends (i.e., those who have been friends for at least 2 years) utilize to sustain their friendships. Following a constructivist approach, we interviewed people living with dementia, friends, and family members to better understand how friendships are maintained after a diagnosis of dementia. Data were analyzed using thematic analysis. An overarching theme, adapting to change, was generated. Participants adapted in several ways, including: (1) prioritizing friendship, (2) shifting ways of thinking about our friend/ship, and (3) addressing changes through practical strategies. These strategies helped maintain mutually beneficial, reciprocal friendships that were able to withstand changes that accompany a diagnosis of dementia.

Cities around the world are responding to aging populations and equity concerns for older people by developing age-friendly communities plans, following the World Health Organization’s guidelines. Such plans, however, often fail to account for the wide diversity of older people in cities, with the result that some older people, including Indigenous older people, do not see their needs reflected in age-friendly planning and policies. This article reports on a study involving 10 older First Nations and Métis women in the city of Prince George, Canada, comparing the expressed needs of these women with two age-friendly action plans: that of the city of Prince George, and that of the Northern Health Authority. Four main categories were raised in a group discussion and interview with these women at the Prince George Native Friendship Centre: availability of health care services, accessibility and affordability of programs and services, special roles of Indigenous Elders, and experiences of racism and discrimination. There are many areas of synergy between the needs expressed by the women and the two action plans; however, certain key areas are missing from the action plans; in particular, specific strategies for attending to the needs of Indigenous and other older populations who often feel marginalized in health care and in age-friendly planning.

This paper explores the thorny mingling of law with qualitative social science methodologies through the lens of the 2010–11 Supreme Court of British Columbia Charter Reference on polygamy, which was conducted to determine whether the criminalization of polygamy was consistent with the Canadian Charter of Rights and Freedoms. The Reference reveals how the marginalization of qualitative research(ers) effectively controlled whose voices were to be heard and whose were to be silenced in the broader project of sovereign intervention into family formation. With specific focus on Professor Angela Campbell, who provided expert opinion testimony in the Reference, this paper reflects on two important questions: when social science is invoked in legal settings, whose knowledge is legitimized, and who benefits from this legitimization? Drawing upon the longstanding feminist project of deconstructing assumptions of value-neutrality in all science, this paper considers how qualitative, feminist research(ers) may be inherently at odds with law’s quest for (rational) “truth.”

We present the development of a regional dementia strategy in Southwestern Ontario, Canada. We worked with stakeholders in a regional health authority to develop a dementia strategy. We conducted interviews with persons with dementia and their care partners (n = 26) and health care administrators and policy makers (n = 33); and administered a priority-setting survey (n = 64). Both participant groups identified provider compassion, professionalism, and care in the early stages of dementia as system strengths. Both groups also highlighted a need for more integration and coordination, a need for more person-centred care, support for care partners, and more flexibility in the provision and receipt of services. The highest-ranked priorities were improving care partner support, improving access to care, and improving system-wide quality. We integrate these strengths, needs, and priorities in a strategic framework, “Whole Person, Whole Journey”. Organizations developing a dementia strategy may use this framework as a springboard for their own work.

Background: There is little empirical research into lay definitions of frailty. Objectives: (1) To explore the definitions of frailty among older men, and (2) to explore if these definitions match commonly used clinical definitions of frailty. Methods: Analysis of open-ended questions to survey data from a prospective cohort study of older airmen. The definitions of frailty were elicited, and grouped according to themes. Results: 147 men responded (mean age: 93). There was considerable heterogeneity in older men’s’ definitions of frailty, and no theme of frailty was predominant. The most common theme was impairment in activities of daily living. Older men’s’ definition of frailty was not consistent with any commonly used medical theory of frailty. Conclusions: Most older men think frailty is important, but their definitions are not consistent. Frailty may be a heterogeneous experience, which different people experience differently.

In this qualitative study, I followed an approach to examine perceptions about retirement, using an interview guide informed by the life course perspective, among 26 men and women who had retired from positions as chief executive officers. Three key themes emerged: (1) the importance of productivity and networking as participants rose up the corporate ladder; (2) the sense of having a “best before” date and experiencing societal pressures to retire; and (3) struggles with feeling insignificant in retirement while desiring personal fulfillment through continued engagement in paid work. These findings shed light on the value of using a life course perspective to examine retirement as both a personal experience and as a social phenomenon. Findings also contribute to theoretical understandings of productive aging by illustrating how preconceptions about productivity contrast with ideations of a leisure-filled retirement in ways that can foreshorten the employment contributions of some individuals.

It is possible for individuals with a diagnosis of cancer to see the illness as an opportunity to change and to make certain decisions that could improve their chances of recovery. We aimed, through qualitative research, to understand the experience of cancer in older adults through new behaviors and habits, intentions to change and maintenance of old behaviors and habits in the context of the disease. Our participants were 10 people aged 60 to 73 with a diagnosis of cancer. The majority of participants expressed intentions to change or adopted new behaviors or habits. Relatives had very little influence on participant’s choices and participants did not seek information on cancer or ways to contribute to healing. However, they were very receptive to the recommendations made by physicians.

Although interest on older homelessness is gaining momentum, little research has considered the experiences of first-time homelessness from the perspective of older adults themselves. This constructivist grounded-theory study addresses this gap by exploring how societal perceptions of homelessness and aging shape access to housing, services, and perceptions of self for 15 older adults residing in emergency homeless shelters in Montreal, (Quebec, Canada). Findings revealed that homelessness evoked a grief response characterized by shock, despair, anger, and in some cases, relief. Connecting and receiving support from other shelter residents and staff helped participants to acknowledge and grieve their losses. However, difficult shelter conditions, the stigma associated with aging and homelessness, and not having their grief recognized or validated served to disenfranchise grief experiences. Conceptualizing later-life homelessness as disenfranchised grief contributes to the aging and homelessness literature while providing new avenues for understanding and validating the experiences of a growing population of vulnerable older adults.

This qualitative study describes expectations, concerns, and needs regarding long-term care (LTC) homes and home care services of 12 older lesbian and gay couples living in Canada. Our findings reflect four major themes: discrimination, identity, expenditure of energy, and nuanced care. Discrimination involved concerns about covert discrimination; loss of social buffers as one ages; and diminished ability to advocate for oneself and one’s partner. Identity involved anticipated risk over disclosing one’s sexual identity; the importance of being identified within a coupled relationship; and the importance of access to reference groups of other gay seniors. We conclude that partners were burdened by the emotional effort expended to hide parts of their identity, assess their environments for discrimination, and to placate others. Nuanced care involved a mutual level of comfort experienced by participants and their health care providers. These themes inform understandings of LTC homes and home care services for lesbian and gay older couples.

The purpose of the study examined in this article was to understand how non-physician health care professionals working in Canadian primary health care settings facilitate older persons’ access to community support services (CSSs). The use of CSSs has positive impacts for clients, yet they are underused from lack of awareness. Using a qualitative description approach, we interviewed 20 health care professionals from various disciplines and primary health care models about the processes they use to link older patients to CSSs. Participants collaborated extensively with interprofessional colleagues within and outside their organizations to find relevant CSSs. They actively engaged patients and families in making these linkages and ensured follow-up. It was troubling to find that they relied on out-of-date resources and inefficient search strategies to find CSSs. Our findings can be used to develop resources and approaches to better support primary health care providers in linking older adults to relevant CSSs.

Based on a small qualitative study of three religious freedom cases, this article uses litigant narratives as springboards for reflection on the theme of inclusion in the Canadian political community. The article attends to the affective dimension of inclusion, focusing on whether participants felt included or excluded. Successful litigants told narratives of Canada as a country in which they could be included in public life without forgoing their religious practices. The narratives of unsuccessful litigants were more complex. These particular litigants did not have a desire to participate in public practices and institutions. Rather, their narratives understood religious freedom on a contractual basis, portraying their loss in court as a breach of covenant. Moreover, though these narratives contained themes of rejection and exclusion, participants said that they had faith enough in their eventual success that they would stay in Canada rather than emigrate.

This article explores how dementia care is provided to First Nations communities in southwestern Ontario. Data were collected through in-depth interviews with health care providers and analysed using a constructivist grounded-theory methodology. Two interrelated frameworks for understanding dementia care were identified: a care delivery framework and a knowledge framework. The care delivery framework identified care goals, care elements being provided, care barriers, and strategies and solutions to deliver care and overcome barriers. The knowledge framework defined four groups of knowledge stakeholders: persons with dementia, informal care providers, formal care providers, and the First Nations community. It identified the knowledge each stakeholder held or needed and processes of sharing – or failing to share – knowledge in dementia care. Several barriers, many created by a lack of knowledge, negatively impacted dementia care. However, health care professionals had effective strategies for providing care, designed to overcome barriers and which encompassed elements of knowledge sharing.

Qualitative knowledge on ethnicity and aging remains sparse and needs to be expanded. Qualitative research suggests a promising route to better understanding of different ethnic groups as well as of intra-ethnic group diversity. However, such research is not problem-free. This paper presents three interview scenarios, discusses a number of problems noted in the existing literature as well as some problems the author has encountered in the course of research and raises important issues relating to conducting interviews with ethnic seniors for qualitative studies.

This article explores the potential of discourse analysis for understanding issues in aging and in the lives of older people. We describe discourse analysis from the perspective of discursive psychology and identify the basic features of discourse analysis: (1) talk and written texts are viewed as action; (2) talk itself is the topic of interest (not an index of internal states); (3) variability is viewed positively. Stages of discourse analysis are briefly discussed. We then consider examples of discourse-analytic research (on identity construction, phatic communion, frame stereotyping and humour). We conclude by suggesting possible uses and applications of discourse analysis in research on aging.

Gerontologists have regarded retirement as a negative event and seldom have investigated the successful retiree or older worker. This study provided descriptive data about both of these groups by triangulating quantitative and qualitative methods. Twenty-one retired and 30 employed professionals over the age of 60 were assessed for general levels of well-being and life satisfaction. They were then interviewed about the meaning and significance of their careers, and the strategies used to cope with job-related problems. Results showed both groups to be involved in meaningful social relationships, and well-adjusted and satisfied with their current lives. Differences between the groups emerged from the interviews: Employed professionals valued the prestige and challenge of a career; retirees mentioned supportive interpersonal relationships and the need to complete a job. Workers also mentioned delegating authority and establishing networks as valuable coping strategies. Some disciplinary differences were also noted within each group. These results underscore the usefulness of blending qualitative and quantitative data in research on work and retirement.