Disclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice.
Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.
Accessible summary• This article is about the feelings of powerlessness that professionals feel to cure learning disability and to answer questions such as 'why do I have a learning disability?' • We describe how Emma showed us through role play what it was like to have learning difficulties. • This article is interesting to people with learning disabilities because they can see how professionals struggle to understand what it is really like to have learning difficulties.
SummaryThe theme of powerlessness is relevant to learning disability because learning disability happens to people who do not choose and do not want to be learning disabled. Additionally, although there are many ways in which professionals can make the experience of living with a learning disability easier, we are powerless to cure learning disability, or answer the question asked by one of our clients (Emma) 'why me? (and not you)'.
This article reviews the empirical literature on gender identity disorder in Adolescents: one of the most contested diagnoses in DSM. Fourteen studies were identified, a critique is provided and the surrounding controversies explored. This article suggests recommendations for future practice and research.
Accessible summary• This article is about Emma's experience of living with learning difficulties.• Emma expresses a lot of anger, and talks about feelings of loss.• This article is interesting to people with learning disabilities because they can see if their experience is like Emma's in any way.
SummaryThis paper presents Emma's story: her experience of living with learning difficulties. The emerging themes of loss, blame and anger are discussed.
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