The impact of self-advocacy organizations on the subjective well-being of people with intellectual disabilities: A systematic review of the literature.

BACKGROUND: A high sense of subjective well-being has been associated with more prosocial behaviours, better health, work productivity and positive relationships. The aim of this systematic review was to explore what impact self-advocacy has on the subjective well-being of people with intellectual disabilities. METHOD: The authors reviewed articles focusing on the perspectives of adults with intellectual disabilities engaged with self-advocacy groups. Searches were performed in PsychINFO, Web of Science, SCOPUS, MEDLINE and CIHNL databases, resulting in 16 articles meeting the inclusion criteria. A framework synthesis approach was used to extract data deductively based on the Dynamic Model of Wellbeing. RESULTS: While self-advocacy has a positive impact on all domains of the Dynamic Model of Wellbeing, negative impacts associated with participation in a self-advocacy group were also reported. CONCLUSIONS: The benefits of participating in self-advocacy groups on the well-being of individuals with intellectual disabilities outweigh the disadvantages.

" but if you're afraid of things, how are you meant to belong?" What belonging means to people with intellectual disabilities?

BACKGROUND: A policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature. METHOD: Three focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants. CONCLUSIONS: Implications for policy, service provision and practice are discussed.

The added value of inclusive research.

BACKGROUND: The study asks when does inclusive research add value? The authors argue that this is important, given the additional time and cost of co-researching with people with intellectual disabilities. The study is situated in debates about a "second generation" of inclusive research which advocates focussing more on outcomes than process. The authors argue that this is premature, rather the authors propose that inclusive research is valuable when it helps to recognize, foster, and above all communicate the contributions people with intellectual disabilities can make. METHOD: The authors conducted a literature review of 52 peer-reviewed journal articles about inclusive research and analysed them.. RESULTS: The authors conclude that inclusive research adds value when there is a distinctive contribution which only co-researchers with intellectual disabilities can make, when it highlights the contributions people with intellectual disabilities make, and when it contributes to better lives for the wider population of people with intellectual disabilities. CONCLUSIONS: The authors propose a revised definition of inclusive research to replace that published by Walmsley and Johnson in 2003.

Peer-reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice?

BACKGROUND: Inclusive research is increasingly common in intellectual disabilities research, but ways in which voice of co-researchers with intellectual disabilities is presented remain underexplored in the literature. MATERIALS AND METHOD: The authors conducted a literature review and analysis of peer-reviewed journal articles reporting on inclusive research. The aim was to explore the ways the voices of co-researchers with intellectual disabilities are represented in published peer-reviewed journal articles. RESULTS: The findings indicate that there are a wide range of ways in which inclusive research projects are reported in peer-reviewed journals. However, the experiences, views and opinions of co-researchers are often either absent or very selectively reported. CONCLUSIONS: The article concludes that although inclusive research has proliferated in the 21st century, more attention needs to be paid to the ways in which the voices of co-researchers with intellectual disabilities are heard in formal academic contexts. Guidelines for future practice are offered.

Telling the history of self-advocacy: a challenge for inclusive research.

BACKGROUND: This paper tells the story of Central England People First's (CEPF) History Project. METHOD: This was an inclusive research project, owned and controlled by members of CEPF which sought to chart its 21-year history, 1990-2012. RESULTS: It illustrates both the strengths of such a project and some of the challenges. CONCLUSION: It concludes that using inclusive research methods enabled the story to be told, but that it was less successful in addressing questions about why the organization grew and prospered in the 1990s, only to struggle in its later years, and what this tells us about the conditions which enable self-advocacy to flourish. The paper was collaboratively written by the CEPF History Project team and an academic ally. Different fonts differentiate the contributions, although it is acknowledged that lots of the ideas were shared. This paper explores issues in telling the history of self advocacy using inclusive research methods. It explains how and why CEPF recorded its history, what we found out, and some of the questions we have had to think about: whose voices we hear what to include, what to leave out what parts of the research people with learning difficulties can do what self advocacy means to different people how to make use of research other people have done. It raises some new questions about directions for inclusive research. The Paper was written by the CEPF History team - Craig Hart, Ian Davies, Angela Still and Catherine O'Byrne - working with Jan Walmsley. We wanted to make it clear what were Jan Walmsley's ideas and what were our ideas. We have done this by writing our ideas in a different font. BUT lots of the ideas belong to all of us.

An investigation into the implementation of annual health checks for people with intellectual disabilities.

This project, conducted during 2010 by a researcher working with a self-advocacy group, investigated the implementation of Annual Health Checks (AHCs) for people with intellectual disabilities in Oxfordshire, where only 26.1 percent of AHCs were completed in 2009-10 (national average 41 percent). AHCs were introduced in England in 2008 as a response to findings that people with intellectual disabilities have significantly worse health care than other groups. GP practices are financially incentivized to offer AHCs. This study found that slow progress in implementing AHCs was attributable to: uncertainty over who was eligible; limited awareness in general practices about the legal duty to make 'reasonable adjustments' to facilitate access; limited awareness of AHCs and their potential benefits amongst carers and adults with intellectual disabilities; and in some cases scepticism that AHCs were either necessary or beneficial. The article also explores the benefits of undertaking this project in partnership with a self-advocacy group.

Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research.

In this paper the author considers the lessons to be drawn from what is termed "inclusive" learning disability research for user involvement around health improvement. Inclusive learning disability research refers to research where people with learning difficulties (intellectual disability) are involved as active participants, as opposed to passive subjects. There is by now a considerable body of such research, developed over the past 25 years. From the review, the author draws attention to areas which can inform practice in involvement of users in a way that adds value.