A Scoping Review of Mental Health and Wellbeing Outcome Measures for Children and Young People: Implications for Children in Out-of-home Care.

Purpose: One of the challenges for mental health research is the lack of an agreed set of outcome measures that are used routinely and consistently between disciplines and across studies in order to build a more robust evidence base for how to better understand young people's mental health and effectively address diverse needs. Methods: This study involved a scoping review of reviews on consensus of the use of mental health and wellbeing measures with children and young people. We were particularly interested to identify if there are differences in measures that are recommended for children and young people with care experience including those with developmental disabilities. Findings: We identified 41 reviews, of which two had a focus on child welfare settings, three on childhood trauma and 14 focused on children and young people with developmental disabilities. Overall, our review highlights a lack of consensus and a diversity of measures within the field. We identified 60 recommended measures, of which only nine were recommended by more than one review. Conclusions: Our review highlights the need for greater agreement in the use of mental health outcome measures. While our review highlights that there is value in identifying measures that can be used with any child or young person, researchers need to take into account additional considerations when working with children and young people with care experience and those with developmental disabilities, to ensure measures are accessible and sensitive to their life experiences.

"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.

BACKGROUND AND OBJECTIVES: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia. RESEARCH DESIGN AND METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples. RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge. DISCUSSION AND IMPLICATIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.

An agenda for future research regarding the mental health of young people with care experience.

Young 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.