Article 19 of the UN Convention on the Rights of People with Disabilities calls for all people with disabilities to live independently and be included in their community. Adults with intellectual disabilities may live in neighbourhoods, but often have limited experience of social connectedness. This study aimed to examine the role of service provider organisations in supporting social inclusion in neighbourhoods of adults with intellectual disabilities. The understanding of social inclusion locally for adults with intellectual disabilities was explored and whether organisational policies (if any) had been drawn up to guide the support actions of staff. A mixed methods design was employed, with CEOs/service leaders of 40 service provider organisations completing an online survey. Follow‐up telephone interviews were completed with a randomised sample. Data were analysed using descriptive statistics and qualitative content analysis. Service leaders understood social inclusion to encompass purposeful engagement that moved beyond mere physical presence. Individuals having a sense of connection to place and belonging to people who live locally included fostering mutually supportive connections with neighbours. Equality of access to local services and supports were underscored. Active citizenship and service provider/staff supports for a socially included life were highlighted. Almost all service leaders rated the role of service providers at organisational/strategic level as important. However, their values and beliefs revealed contrasting views on the appropriate level of visibility of service providers when supporting individuals. Close to two‐thirds of service providers did not have an organisational policy regarding social inclusion in neighbourhoods. Developing specific service policies on social inclusion in neighbourhoods, based on the UNCRPD, and reflecting relevant national disability policies is proposed. This may enhance strategic planning and service providers decision‐making on targeted resource allocation. Further implications for policy, practice and research arising from this study are discussed.
Background Complicated grief has been identified as a phenomenon in the general population, and there is an increasing body of research investigating complicated grief in people with intellectual disability. The aim of this study is to synthesise this existing knowledge from research published between 1999 and 2022. Methods A structured systematic review using PRISMA guidelines was conducted, which searched three commonly used databases (Medline, PsycINFO and CINAHL) for research on the topic of bereavement and intellectual disability. The articles identified in this search were screened to identify those that addressed the issue of 'complicated grief', with all abstracts and subsequent full texts reviewed by two researchers. Results In total, 179 abstracts were initially identified, with 34 articles eligible for full text screening and 18 papers reaching criteria for inclusion. Data relating to the studies' objectives were extracted under the headings of definition, defining principles, signs and symptoms, risk factors and treatments for complicated grief in intellectual disability. Thematic analysis of the extracted data was performed to identify key themes. Conclusions This review highlights that people with intellectual disability are likely to experience complicated grief reactions and that complicated grief is both underestimated and a clinically significant condition for people with intellectual disability. Future research should work to clarify diagnostic criteria and identify appropriate interventions.
Accessible summary Getting involved in your neighbourhood is important, but going places and meeting new people is not always easy. Using services locally and knowing what is on that you might join in with can sometimes be hard. Brothers and sisters told us what they think about this and how they may be able to help. People with intellectual disability told us how they feel about their brother or sister being involved in their lives. AbstractBackgroundWith an international policy trend to close residential institutions, adults with intellectual disabilities are more likely to live in ordinary localities. However, this does not always equate with engagement, leading to forming new relationships and having a sense of connection to place. Social inclusion in neighbourhoods involves a complex interplay of facilitators and barriers. The role of nondisabled adult siblings as connectors for their sister/brother's social inclusion in their locality has received little research attention. This study explores the experiences of nondisabled siblings of offering support for local engagement and siblings with intellectual disability of being supported by their brothers/sisters.MethodsA multiple dyad case study methodology examined the experiences of 16 participants, made up of eight sibling pairs. Adults with moderate intellectual disability living in a range of neighbourhood types and their nominated sibling formed a self‐selecting sample. Each dyad took part in a series of three (individual and joint) interviews. Qualitative data were analysed using reflexive thematic analysis in a four‐stage process that included individual, dyad and cross‐case analysis.FindingsFive themes were interpreted to explicate wide‐ranging experiences of the role of nondisabled siblings in supporting their brother/sister to be socially included in their locality, including the sibling role as shaped by the family context: the influence of push and pull factors and the influence of service providers on sibling engagement. Themes also reveal siblings’ intentional and unintentional support for social inclusion and a range of factors that foster or hinder local engagement.ConclusionsThe role of adult siblings in supporting engagement and as local connectors has potential as a resource that will contribute to the social inclusion in neighbourhoods of adults with intellectual disabilities. However, a range of factors exist that influence the nature of their involvement. Implications for practice and further research are considered.
Adults with intellectual disability (ID) are now more likely to live in ordinary localities. However, this does not always equate with engagement, leading to forming new relationships and a sense of connection. This systematic scoping review examined research on social inclusion in neighborhoods for adults with ID, synthesizing 94 peer-reviewed studies published between 2000 and 2020. The characteristics of neighborhoods that foster inclusion include: richness of opportunities in localities, public acceptance, positive neighboring, and multidimensional accessibility. Social inclusion in neighborhoods is complex, with a range of other influencing factors also identified. Recommendations for further research and implications for practice are discussed to support individuals to actively engage locally and to enhance their informal social networks.
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