Personal assistants (PAs) emanate from the independent living movement and were introduced in response to disabled people’s oppression, rooted in discrimination, institutionalisation and asymmetrical forms of care. PA schemes allow disabled people to directly employ a PA, enabling choice and control over how and by whom support is provided. Empirical research demonstrates the complexity or ‘troubles’ entangled in PA–employer relationships, alongside the poor employment conditions often experienced by PAs. Yet, there is a lack of understanding of how such issues affect PA well-being. This systematic review of 47 items explores factors that affect and can support well-being outcomes for PAs. A search was conducted in February 2024. Items were included if they focused on the PA workforce, were published since 2000 and originated from Scotland and comparable nations. Three key findings are discussed through an ethics of care lens: interdependence and the significance of being attentive to the needs of both PAs and employers; the unique PA–employer relationship, which can support or hamper well-being; and the paradox between the rewarding nature of the job and its low public status. This article concludes that improving PA well-being is an important outcome for both PAs and PA employers and requires both structural and cultural change.
Providing care to a family member living with dementia is often emotionally demanding and complex. This article explores emotion management in family caregiving within the framework of municipal support, specifically carer dementia education. It aims to critically examine the role and function of such education and to understand family caregiving as embedded within broader social and organisational support systems. Data were collected through participant observations of carer dementia education sessions and interviews with participating carers. The findings reveal how carers are guided to feel and respond in particular ways, learning what is considered ‘right’ or ‘wrong’ within the caregiving context. For cohabiting family members, especially spouses, caregiving involves navigating between maintaining a sense of couplehood and assuming a caregiving role. At the same time, moments of resistance illuminate the moral and emotional expectations embedded in the educational setting. The article highlights that carer dementia education not only provides practical knowledge but also socialises carers into normative expectations that shape how caregiving is understood and enacted, inviting critical reflection on the emotional governance embedded in support structures for family carers.
In China, with the ageing of the population, family care is gradually attracting public attention. Nevertheless, there has been little research comparing caregiving experiences between women of different birth cohorts and their subjective perceptions of policies. Therefore, this article uses a life-course theoretical framework, focusing on three groups of female urban family caregivers born in the 1940s, 1950s and 1960s. Through narrative interviews, this article explores the evolution of their family roles and examines their current perceptions of supportive services. The article finds that while the three generations of women exhibited significant differences in the causes of caregiving and access to resources, they demonstrated high generational homogeneity in emotional labour, filial duty and the gender-based division of labour. This article reveals that women’s caregiving trajectories are cyclical and transmissible, enriching our understanding of women’s family caregiving experiences and providing theoretical references and practical insights for optimising generational caregiving support policies.
Relational care is an emerging approach to supporting older people and carers, gaining momentum as part of a broader movement to reimagine adult social care. Drawing on a qualitative study conducted across residential care homes, sheltered housing and day care settings in the UK, this article defines relational care and identifies its most significant features in the context of older people. Spanning conceptual, knowledge and research development, the article reveals how environments can be fostered in which care relationships are multidirectional and older people and carers are recognised as both givers and receivers of care, as well as equally valued contributors. These insights offer a valuable framework for informing the development of social care policy and practice at both the national and international levels.
Although the asylum procedure marks the end of the journey for unaccompanied refugee minors in countries like Switzerland, many continue to experience precarious conditions due to contextual factors, such as unstable relationships or limited rights. However, some studies suggest that these young people see themselves as active and empowered individuals rather than as helpless victims. This article explores the largely unexamined position of migrant young carers, defined as unaccompanied minors with refugee backgrounds who regularly support or care for others. The article draws on data from an ethnographic longitudinal study in Switzerland to investigate how these youths navigate their dual roles as caregivers and care receivers within transnational care relations. The study sheds light on the positioning processes employed by the subjects and the diverse forms of (transnational) care work they perform, including emotional, familial and existential responsibilities.
COVID-19 lockdowns and infection control restrictions provide a lens through which to explore the important forms of relational and relationship-centred care that are provided by family caregivers for people with dementia living in residential aged care. Insights from qualitative research conducted in the Australian cities of Perth and Adelaide highlight the importance of familiar, intercorporeal and interaffective presence to sustaining well-being and personhood for people experiencing cognitive decline, especially people from culturally and linguistically diverse backgrounds. Our analysis reveals three distinct types of relational care provided by family caregivers, namely, personal and practical care, emotional and moral care, and cultural and spiritual care.
Family carers are expected to engage in the co-production of healthcare, thereby enhancing quality. We investigated, from carers' viewpoints, how this can be achieved for older patients and those in palliative care, by conducting secondary analyses of qualitative data on carers' experiences in Norwegian healthcare. We found that carers' contribution depends on the presence or absence of recognition of carers' experiential knowledge, situated overview, abilities and limitations, and information needs. We argue that ignoring carers' epistemic contributions represents a missed opportunity for conceptualising care quality in ways that encompass the complexities involved and parity of participation in individual care situations.
This article introduces and assesses the use of factorial survey experiments in welfare, social policy and long-term care research. A systematic literature review highlights that comparative perspectives and eligibility-centred studies constitute a small share of applications of factorial survey experiments. Addressing this gap, the article proposes a set of good practices based on an empirical comparative application of the methodology to assess inclusiveness in long-term care schemes. More specifically, it reports on the potential applications of factorial survey experiments in care-related research, with a focus on their potential in comparative studies and the unique issues they may present, demonstrating which methodological aspects must be considered in valid comparative applications of the method.
Public community organisations (libraries, museums, citizen service centres and so on) can contribute to a dementia-friendly community. The perspectives of staff play an important role in this. As part of a participatory health research project, we collected small stories about the experiences of staff with people with dementia and informal carers. Staff in public community organisations have considerable experience interacting with people with dementia. Participants describe individual strategies for dealing with the uncertainty and a lack of institutional support. Communication training and structures to reflect on the conflicts in encounters with people with dementia in public community organisations are supportive of their becoming dementia friendly.
There is a tendency in caregiving research to centre the caregiver perspective. This limits understanding of dementia care as a relational process. Dyadic studies that include persons with dementia as active participants show families working together to sustain their connection. However, these studies typically involve couples and persons with early to mid-stage dementia. In this article, we examine how care is enacted over time in three intergenerational family dyads in which the parent is living with advanced dementia. Our methods incorporate a small stories research model of inquiry and an interview process that includes a dyadic interview designed as a joint storytelling activity. In our analysis, we watch for storylines that bring together small story data associated with particular care practices, which we map into a temporal sequence. To illustrate our findings, we discuss three storylines, one from each of the three participating dyads: 'Engaged in our lives' (Dyad 1); 'We just always had fun' (Dyad 2); and 'From an uncaring place to a caring place' (Dyad 3). By tracing the trajectory of particular care practices and by observing these same care practices in action during the dyad interviews, we were able to highlight a mutuality of contribution, whereby the contributions of participants with dementia were visible alongside those of their relatives. Our findings highlight the role played by familiar care practices in maintaining, continuing and repairing intergenerational family relationships as symptoms of dementia advance.
This novel article explores how correctional end-of-life care advocates interpret and describe the motivations of incarcerated peer volunteers who provide care for dying peers. Drawing on semi-structured interviews with 12 advocates across three US states and utilizing interpretative phenomenological analysis (IPA), this article examines how advocates construct narratives about incarcerated volunteers' participation in end-of-life programs, including themes of compassion, atonement, inclusion, and humanity. Findings suggest that while peer volunteers provide unique forms of care that professional staff often cannot, such as fostering trust, sitting vigil, and reducing suffering, the data reflect advocates' perspectives rather than direct accounts from volunteers themselves. The article acknowledges this limitation and situates the findings as interpretations of volunteers' presumed motivations and the broader dynamics of care in correctional settings. Recommendations for policy, practice, and research are discussed, emphasizing the importance of peer-caregiving programs in enhancing humane and dignified end-of-life care in prisons.
Values-based recruitment (VBR) has been proposed as a potential solution to a number of workforce challenges in UK adult social care, which could, in turn, be applied to other national contexts facing similar issues. The review presented in this article uses a systematic approach to suggest that VBR has the potential to improve the recruitment and retention of staff in adult social care. However, while many sources make claims regarding the benefits of VBR, this review highlights the need for more robustly designed studies, with greater clarity around the 'right values', to explore the real effectiveness of this method to improve recruitment and retention in the longer term.
As a large share of long-term care occurs at home, there is a need to respond to abuse by family carers in policy and research. Drawing on social constructionism, this article examines how such abuse is problematised in Finnish third-sector violence prevention discourse, which highlights fatigue as a central underlying cause of abuse. The findings show that fatigue-induced carer abuse is problematised in three ways: (1) as a problem of individual carers who, with limited emotional skills, face overwhelming circumstances; (2) as a cultural issue shaped by gendered expectations of care and aggression; and (3) as a failure of the welfare state to provide long-term care. The response suggested by such problematisations is constrained by its focus on fatigue, thereby excluding other dynamics, such as intimate partner violence. Nevertheless, this perspective can complement the dominant clinical approach by acknowledging the ambivalences of care and the ways in which abuse is connected to culture and long-term care systems.
This article explores the concept of responsibility in the narratives of family carers in Spain. It is based primarily on a qualitative analysis of interviews with family carers. 'Naturalised obligation', a perspective grounded in moral obligation that reflects cultural mandates around gender and kinship, is contrasted with 'negotiated obligation', which questions the extent to which the obligation to provide care should fall on particular family members and argues for redistribution. The article concludes that in order to overcome structural inequality and ensure sustainability, it is vital to advance towards a fairer and more inclusive collective ethics of care.
