Aim: Informal caregivers share common experiences in providing care to someone with health and/or social needs, but at the same time their experiences differ across diverse backgrounds such as gender, age, culture, as these aspects of diversity co-shape these experiences. This scoping review aims to explore how aspects of diversity, across their intersections, are currently incorporated in informal care research and discusses how an intersectional perspective can further develop our understanding of informal care. Methods: A scoping review was performed to map relevant caregiving literature from an intersectionality perspective. Key terms ‘informal care’ and ‘intersectionality’ were used for a search in four databases resulting in the inclusion of 28 articles. All 28 studies were analysed based on a scoping review created intersectionality informed coding scheme. Results: Aspects of diversity are largely understudied in informal care research, in particular across their intersections and from a critical perspective. This intersectional informed analysis revealed that when studying diverse caregiving experiences the use of intersections of dimensions of diversity provides a nuanced understanding of these experiences. Conclusions: Adopting an intersectional perspective ensures that not only different categories or social identities of caregivers are included in future studies, but the mutual relationships between these categories embedded in their specific context are actually studied.
DOCUMENT
This article uses a study of the life-story narratives of former classmates of Dutch and Moluccan descent to argue that the constructionist approach to intersectionality, with its account of identity as a narrative construction rather than a practice of naming, offers better tools for answering questions concerning intersectional identity formation than a more systemic intersectional approach. The case study also highlights the importance of the quest for origins in narratives. It demonstrates that theories of intersectionality are not justified in subsuming the issue of belonging under the identity marker of ethnicity, when all identities are performatively produced in and through narrative enactments that include the precarious achievement of belonging. The case study demonstrates that if narrative accounts of a (singular or collective) life fail to achieve narrative closure regarding roots, attempts to trace routes are seriously hampered.
DOCUMENT
This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.
DOCUMENT
As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
DOCUMENT
DOCUMENT
In many western countries informal care is conceived as the answer to the increasing care demand. Little is known how formal and informal caregivers collaborate in the context of an diverse ageing population. The aim of this study was to gain insight in how professionals’ perspectives regarding the collaboration with informal carers with a migration background are framed and shaped by intersecting aspects of diversity. We used an intersectionality informed qualitative design with informal conversations (N = 12) and semi-structured interviews (N = 17) with healthcare professionals working with clients with Acquired Brain Injury. Two critical friends were involved in the analysis which was substantiated by a participatory analysis with a community of practice. We identified four interrelated themes: (a) ‘The difficult Other’ in which professionals reflected on carers with a migration background causing ‘difficulties’; (b) ‘The dependent Other’ refers to professionals’ realization that ‘difficulties’ are intensified by the context in which care takes place; (c) in ‘The uncomfortable self’ professionals describe how feelings of insecurities evoked by the Other are associated with an inability to act ‘professionally’, and; (d) ‘The reflexive self’ shows how some professionals reflect on their own identities and identify their blind spots in collaboration within a care network. These themes demonstrate the tensions, biases and power imbalances between carers and professionals, which may explain some of the existing health disparities perpetuated through care networks.
DOCUMENT
Boekbesprekingen van : Michael Sandel. Niet alles is te koop: De morele grenzen van marktwerking. Utrecht: Ten Have, 2016 Peter Hendriks. Turkish-Dutch and Moroccan-Dutch female professionals in social work. The self-perception of young, newly-started professionals in social work. Delft: Eburon, 2018. Denise Robbesom. ‘Werken aan trage vragen’. De woorden van Harry Kunneman. Leusden: ISVW Uitgevers, 2017.
DOCUMENT
Challenges in keeping healthcare affordable make informal care increasingly important. It is essential to understand the context in which people provide informal care and gain insight into their wishes with regard to the division of care responsibilities. A total of 37 interviews and eight focus groups were conducted to investigate how Dutch carers’ care attitudes are shaped. Results show that carers’ intersecting social positions, such as gender, migration background, socio-economic status and stage of life, largely influence their care attitudes. Carers want to provide care but experience challenges in doing so. They request a government that takes the lead and facilitates cooperation with professionals.
DOCUMENT
With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.
MULTIFILE
