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.
Accessible summary• Siblings often play important roles in the lives of people with intellectual disabilities.• This study suggests that young adults who have siblings in residential care can feel isolated in their experience.• Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities.• There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care.
AbstractBackground: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care. Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed. Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as 'one family' whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated. Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.
Accessible summary
People with severe and profound intellectual disabilities need others to support them in most areas of their life. It can be difficult to communicate with people about change and transitions have been identified as an area of concern.
As part of this research, we spent time with six adults with severe and profound intellectual disabilities. We talked to their families and professionals about their transitions and how they were involved in decisions that were made.
Relationships people had with family members and key staff facilitated their engagement and experiences of the world.
Our findings show that it is important that those who know the person well are closely involved in the planning of transitions. There should be a greater focus on maintaining the relationships that people have so that we can build bridges between settings and improve transitions for people with intellectual disabilities.
Abstract
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.
The transition from school to adult services for young people with severe intellectual disabilities has been identified as an area of concern, particularly with regards to how young people can be involved in meaningful ways. Additionally, although available resources and organisational practices seem to play important roles, there seems to be a lack of understanding as to how societal influences shape the process. Our study presents case studies of three young people and their journey from school to adult services from an ecological perspective, examining the decision-making process in the context of multi-agency involvement. We suggest that each transition journey challenged conceptualisations about the involvement of young people in the decisionmaking process. While the practical aspects of the transitions were described as positive, barriers and limitations were identified in the wider organisational context. The only people who clearly talked about the transition in terms of the longterm future were the parents.
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