Putting participation into practice: An ethnographic study of sheltered workshops in the Netherlands and Portugal.

Full participation is recognized as fundamental for the inclusion and wellbeing of people with intellectual disabilities. Only few studies have identified subjective meanings of participation from the perspective of people with intellectual disabilities themselves. Three cross-cutting themes that arise in the few studies that have are choice, social interaction and making a contribution. This ethnographic study of sheltered workshops in the Netherlands and Portugal takes this body of work a step further by investigating to what extent the ideal of participation is put into practice in such a way that it indeed contributes to these three elements. By including contrasting cases, it scrutinizes different ways of institutionalizing participation and the consequences this bears for the lived experiences of people with mild intellectual disabilities. The results show that there is a tension between choice on the one hand, and social interaction and making a contribution on the other.

'Let us be'. Social support needs of people with acquired long-term disabilities and their caregivers in rehabilitation practice in the Netherlands.

In many European countries, including the Netherlands, current care policies encourage 'active citizens' to support each other rather than having individuals rely on paid professional help. Rehabilitation centres also put greater emphasis on social networks assisting adults with acquired long-term disabilities and their caregivers. Often these adults and their caregivers feel insufficiently prepared to cope with the disability in daily life and struggle with community integration. However, little is known about the factors that make vulnerable people accept or decline support from their social networks. We researched the social support needs of persons with acquired disabilities and their caregivers eligible for a family group conference intervention by conducting 19 semi-structured interviews in rehabilitation centres in the Netherlands. A thematic analysis revealed that most couples (15) were reluctant to request (more) support from their social network, even though many of them had a good network to rely on. We identified five reasons for this reluctance: (1) not accustomed asking support, (2) not wanting to be a (bigger) burden, (3) fear of intrusion into one's privacy and independence, (4) fear or problematic motivations such as curiosity or pity and (5) lack of reliability, competence, or comprehension. The main factor seemed to be the lack of reciprocity: couples do not see sufficient options to reciprocate the necessary support. Therefore, before instigating social support-centred interventions such as family group conferences, social care and other health professionals should be aware of any factors causing a sense of reluctance and explore the experiences of an imbalance in reciprocity.

Dementia care-sharing and migration: An intersectional exploration of family carers' experiences.

BACKGROUND AND OBJECTIVES: Previous studies show that persons with a migration background (PwM) caring for a family member with dementia often experience access barriers to formal care services, and that family carers often perform the lion's share of care. Yet research offering a detailed account on their experiences of dementia care-sharing is sparse. In this paper, we respond to this knowledge gap by exploring how different social categories impact on practices of care-sharing in our participants and their families. RESEARCH DESIGN AND METHODS: A qualitative study of six PwM who provide care for a family member with dementia was conducted through two methods: semi-structured, life-story interviews followed by "shadowing" our participants in their daily lives. We were guided by intersectionality as an analytical lens in exploring the multifaceted experiences of care-sharing. FINDINGS: Throughout our analysis, intersections of migration history and social class stood out the most. We elucidate how they influence the attainment of necessary skills to organize and share care-tasks as well as perceptions of "good care." Additionally, our findings illustrate how one's position within the family, the presence or absence of supportive social networks, religion, gendered care norms, and relationship to the care-recipient are relevant to experiences of care-sharing. IMPLICATIONS: Rather than overemphasizing ethnicity and culture, practice and policy should take into account that intersections of various social categories affect care-sharing and the type of support that is (or is not) organized.

The group home as moral laboratory: tracing the ethic of autonomy in Dutch intellectual disability care.

This paper examines the prevalence of the ideal of "independence" in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault's vocabulary of governmentality. Such analyses hold that the goal of "becoming independent" subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of "independence" - the "ethic of autonomy" - actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a "first-person" perspective rather than chiefly from a "third-person" perspective. They then draw on Mattingly to cast the group home as a "moral laboratory" in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the "ethic of autonomy" in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices.

What is the problem of dependency? Dependency work reconsidered.

Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self-determination-a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical 'problem frames' for dependency and to increase our understanding of how dependency can be navigated in practices of long-term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as 'dependency work', a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self-determination, one of parity and one of self-worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long-term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work.

Social dignity for marginalized people in public healthcare: an interpretive review and building blocks for a non-ideal theory.

Jacobson (Social Science & Medicine 64:292-302, 2007) finds two distinct meanings of "dignity" in the literature on dignity and health: (1) intrinsic human dignity and (2) social dignity constituted through interactions with caregivers. Especially the latter has been central in empirical health research and warrants further exploration. This article focuses on the social dignity of people marginalized by mental illness, substance abuse and comparable conditions in extramural settings. 35 studies published between 2007 and 2017 have addressed this issue, most of them identifying norms for social dignity: civilized interactions, non-stigmatizing treatment, treatment as unique individuals, being taken seriously, maintaining a positive identity, experiencing independence, relating to others, and participating in daily life. We argue that these norms belong to ideal theory, whereas we agree with Robeyns (Social Theory and Practice 34:341-362, 2008) and others that improving practice is better served by non-ideal theory. Towards this end, we derive from the literature four building blocks for a non-ideal theory of dignity: (1) avoid violations of dignity rather than seeking to promote it; (2) dignity is not a goal to be reached; it requires ongoing effort; (3) promoting dignity is a balancing act; contradictory norms can make it impossible to realize; and (4) dignity can be undermined by organizational and discursive constraints.

Persons With a Migration Background Caring for a Family Member With Dementia: Challenges to Shared Care.

BACKGROUND AND OBJECTIVES: By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing. RESEARCH DESIGN AND METHODS: A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules. FINDINGS: Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. IMPLICATIONS: Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care-support can achieve this.

The care receivers perspective: How care-dependent people struggle with accepting help from family members, friends and neighbours.

In many countries in north-western Europe, the welfare state is changing, and governments expect a great deal of informal care. In the Netherlands, citizens are also increasingly expected to rely on informal instead of professional care. In this study, we aim to determine to what extent Dutch care-dependent people want to rely on social network members and what reasons they raise for accepting or refusing informal care. To answer this question, we observed 65 so-called 'kitchen table talks', in which social workers assess citizens' care needs and examine to what extent relatives, friends and/or neighbours can provide help and care. We also interviewed 50 professionals and 30 people in need of care. Our findings show that a great deal of informal care is already given (in 46 out of 65 cases), especially between people who have a close emotional bond. For this reason, people in need of care often find it difficult to ask their family members, friends or neighbours for extra assistance. People are afraid to overburden their family members, friends or neighbours. Another reason people in need of care raise against informal care is that they feel ashamed of becoming dependent. Although the government wants to change the meaning of autonomy by emphasising that people are autonomous when they rely on social network members, people who grew up in the heyday of the welfare state feel embarrassed and ashamed when they are not able to reciprocate. Our findings imply that policymakers and social professionals need to reconsider the idea that resources of informal care are inexhaustible and that citizens can look after each other much more than they already do. It is important that social policymakers approach the codes and norms underlying social relations more cautiously because pressure on these relations can have negative effects.

Disabled and elderly citizens' perceptions and experiences of voluntarism as an alternative to publically financed care in the Netherlands.

Many European welfare states are replacing comprehensive welfare schemes with selective and conditional entitlements. Such changes affect the recognition of vulnerable citizens' needs, which are increasingly framed as private responsibilities to be met by the voluntary sector. Repeated interviews with 30 clients affected by cutbacks to publicly financed (day)care in the Netherlands show that although disabled and elderly citizens are often hesitant to open their doors to volunteers, they do experiment with voluntarism to reduce their social isolation, both by receiving voluntary care and by engaging in volunteer work themselves. However, the turn to voluntarism does not always prompt recognition of the needs of vulnerable citizens. This study signals how disappointing and sometimes demeaning experiences with volunteers can increase feeling of misrecognition. We conclude that the virtues of voluntarism may be overstated by policy makers and that the bases of recognition should be reconsidered as welfare states implement reform.

[Voluntary care: a deficient alternative]. / Vrijwilligerszorg: een gebrekkig alternatief.

The value of voluntary care in meeting minor care needs is greatly emphasized in the Dutch Social Support Act (Wet Maatschappelijke Ondersteuning, WMO). Many positive qualities are attributed to voluntary care, which would allegedly be lacking in professional, non-medical care provision. In the process of policy reform, the opinions of care-dependent clients are often not taken into account. In this article we investigate how people with minor care needs - and reduced access to public financed care - perceive and experience the recent shift to voluntarism. We emphasize that care reform not only entails a changing provision of care; it also alters pathways to recognition. A lack of recognition may negatively affect the self-esteem of those receiving care. Our explorative, qualitative study maps various forms of misrecognition, as experienced by clients during the switch to voluntary care. Potential ways to enrich recognition paths for those in need of (minor) care in the new voluntary care model are discussed, to really enable the WMO motto 'Everyone counts'.

Why play an active role? A qualitative examination of lay citizens' main motives for participation in health promotion.

While active participation is regarded essential in health promotion worldwide, its application proves to be challenging. Notably, participants' experiences are infrequently studied, and it is largely unknown why lay citizens would want to play an active role in promoting the health of the community they belong to. Aiming to produce practical insights to further the application of the participation principle, this qualitative study examined participants' driving motives in a diverse array of health promotion undertakings. Six projects in The Netherlands were used as case studies, including a community-project promoting mental health, peer education against harmful substance use, a health support group, health policy development, physical activity and healthy life style courses. The study involved 24 participants, who played a variety of active roles. Semi-structured interviews were conducted, transcribed verbatim and subjected to content analysis. We found four main motives driving lay citizens in their active participation in health promotion projects: 'purposeful action', 'personal development', 'exemplary status' and 'service and reciprocity'. The motives reflected crucially distinct personal desires in the participation process, namely to produce tangible results, to experience advancements for oneself, to gain personal recognition as a role model and to have or maintain valued relationships. The implications of the findings are discussed for researchers and professionals in health promotion.