Suchergebnisse

Old age is still an under-researched stage in the lives of people with a learning disability. Providing support to people towards the end of their lives can be challenging for services and involves complex ethical decision-making processes. This study explores the experiences of social care staff in two life-sharing communities where adults with a learning disability and staff live together. Four main themes were identified, highlighting different dimensions of care. These included an emphasis on relational care, responsive care and collaborative care, and an acknowledgement of barriers to care and caring that allowed people to live and die within the communities.

BackgroundThe 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.MethodsA systematic review was conducted utilising Bronfenbrenner's ecological model to inform framework analysis to synthesise qualitative findings.ResultsTaking 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.ConclusionThemes 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.

AbstractBackgroundDementia disproportionately affects people with intellectual disability. Most qualitative studies explore their experiences by utilising proxy‐reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia.MethodThis systematic review synthesised findings from existing studies (n = 8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, PsychInfo and Social Services Abstracts.ResultsFindings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments.ConclusionThe review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.

AbstractYoung people who are currently or were previously in state care have consistently been found to have much higher rates of mental health and neurodevelopmental difficulties than the general youth population. While a number of high‐quality reviews highlight what research has been undertaken in relation to the mental health of young people with care experience and the gaps in our knowledge and understanding, there is, until now, no consensus, so far as we aware, as to where our collective research efforts should be directed with this important group. Through a series of UK wide workshops, we undertook a consultative process to identify an agreed research agenda between those with lived experience of being in care (n = 15), practitioners, policy makers and researchers (n = 59), for future research regarding the mental health of young people with care experience, including those who are neurodiverse/have a neurodevelopmental difficulty. This consensus statement identified 21 foci within four broad categories: how we conceptualize mental health; under‐studied populations; under‐studied topics; and underused methodologies. We hope that those who commission, fund and undertake research will engage in this discussion about the future agenda for research regarding the mental health of young people with care experience.