94 research outputs found

    Relationships matter!:Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities

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    Background Within the current literature, there is a focus on early transition experiences, such as people's school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disabilities and people with severe or profound intellectual disabilities are often excluded from research. Methods This article explores the transition journeys of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. Data collection involved observations, document reviews and interviews with families and professionals in Scotland. Taking an ethics of care perspective, our focus was to explore in how far each person had people in their lives able to listen to them and if, in turn, those close to them were listened to during times of transition. Findings Our findings demonstrate that transitions are complex processes that occur across different systems. Additionally, our findings emphasise the importance to consider relationships that are available to people within their adult lives when planning and supporting transitions. Combining interviews with observations helped us to see how the six adults showed agency and were communicating their preferences through the relationships they had with people within their immediate environment. Conclusions The need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision-making processes

    Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis

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    Background The transition to adulthood has been described as a difficult time in the lives of young people with intellectual disability. There has been little emphasis on young people with severe or profound intellectual disability specifically, even though their pathways may differ, due to greater support needs across the life course. Methods A systematic review was conducted utilising Bronfenbrenner's ecological model to inform framework analysis to synthesise qualitative findings. Results Taking an ecological perspective proved valuable. The transition process was described as stressful and barriers were identified across the ecological levels. Parents accounted for the majority of participants in studies, and the needs of young people and their parents emerged as highly interdependent. Conclusion Themes reflect the complex nature of the question what adulthood should look like for individuals with severe or profound intellectual disability. There is a lack of involvement of multiple stakeholders and young people themselves within studies
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