Suchergebnisse

SummaryHow did deinstitutionalisation affect the lives of people with intellectual disabilities and people with a psychiatric background? This paper contains a systematic literature review on the consequences of deinstitutionalisation for the target groups, their social network and society at large. PubMed and Online Contents were searched from 2004 till February 2016. Inclusion criteria were (1) article describes (a) consequence(s) of deinstitutionalisation, (2) in Western countries and (3) the target group(s) include people with psychiatric or intellectual disabilities. Sixty-one papers were found and analysed to establish positive, negative or mixed results.FindingsThe positive effects pertain to the quality of life of people with disabilities after deinstitutionalisation. They learned adaptive skills and receive better care. Negative effects relate to more criminal behaviour by the target groups, victimisation of the target groups and physical health issues. Life for the most severely afflicted people with disabilities deteriorated when they moved to smaller group homes in the community. Mixed effects were also found. It is not clear whether deinstitutionalisation leads to real inclusion in the community. It is equally unclear whether it is cheaper than large-scale institutional care. Only a few studies investigate the effects on family members but some show they are overburdened.ApplicationsSocial workers catering for people with disabilities should pay attention to risks for their health and safety and keep an eye on family members. Those who are asked to advise on deinstitutionalisation should consider that this may not benefit the most severely afflicted.

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.

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.

Tento protokol nastiňuje výzkum, který zkoumá vnímání dopadu COVID-19 na osoby s mentálním a vývojovým postižením a jejich pečovatele ze strany rodinných příslušníků a placených zaměstnanců. Důkazy naznačují, že lidé s mentálním a vývojovým postižením zažívají rozdíly v přístupu ke zdravotní péči a využívání. Tento rozdíl byl patrný na počátku pandemie, kdy se objevily diskuse o možném vyloučení této populace z kritické péče. Metody: anonymní online průzkum bude proveden s pečovateli, jak rodinnými příslušníky, tak placeným personálem, aby prozkoumal jejich vnímání dopadu COVID-19 z hlediska demografie, životních podmínek, přístupu ke službám, sociálního distancování a péče o životní pohodu. Průzkum bude vypracován výzkumným týmem, z nichž mnozí jsou odborníky na mentální postižení ve svých vlastních zemích. Pomocí dvojího překladu náš tým přeloží průzkum pro distribuci v 18 zemích po celém světě pro mezinárodní srovnání. Výzkumný tým má rozsáhlé osobní a profesionální kontakty a bude průzkum široce propagovat na sociálních sítích s podporou místních poskytovatelů sociálních služeb pro osoby se zdravotním postižením a organizací zdravotně postižených. Budou provedeny statistické popisné a srovnávací analýzy. Etické schválení pro tuto studii získala Etická komise pro lidský výzkum (HS-20-28-Linehan) na University College Dublin. Diseminace výsledků: Výsledky studie budou připraveny v řadě formátů, aby vyhovovaly potřebám různých cílových skupin. Výstupy budou zahrnovat akademické práce, získané poznatky, pokyny pro praxi, zprávy, infografiku a video. Tyto výstupy budou zaměřeny na rodiny, management poskytovatelů sociálních služeb v oblasti zdravotního postižení, tvůrce politik na vnitrostátní úrovni, orgány pro kvalitu a poskytování zdravotní péče, vnitrostátní pandemické organizace a mezinárodní orgány. ; This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.