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Background: There is a need to better understand autism across the life course, including the lives of both autistic people and supporting relatives. As part of a larger mixed methods cohort study involving autistic adults, carers and relatives this sub-study focused on the experiences of relatives alone to learn more about the lives of people from the wider personal networks. Our research questions were: 1. What are the experiences of family members who care for and/or support autistic adults, 2. How can the viewpoints of relatives add to what we know about transitions and challenges experienced by autistic adults, and 3. What strategies/support have been helpful for adults and relatives? Methods: Relatives of autistic adults were purposively sampled and recruited using the Relatives/Carers cohort from the Adult Autism Spectrum Cohort—UK. 18 participants aged 31-81years who were related to 16 autistic adults aged 18-57years were interviewed for 24-91minutes. Interview transcripts were examined using reflexive thematic analysis. Main findings: Two overarching themes were developed, 'Family support goes a long way in caring for autistic adults' and 'When families turn to society for support' with subthemes. Relatives described benefits they had gained and their admiration for autistic adults. They reflected on how they gave support for independence in various contexts of dependence. They also identified the challenges that both autistic adults and families face navigating support systems (for example for healthcare and employment). An important novel outcome was the advocated value of role-models with lived experience who come from outside of the family. Recommendations: The findings lead to recommendations for: (i) Strategies to reduce the barriers for support that are faced by autistic individuals and relatives during crisis points; (ii) recognition and support for what enables both relatives and autistic adults to function independently (e.g. funded activities, flexible employment); (iii) future planning conversations to include relatives who can enhance knowledge and help plan for future care or support needs for autistic adults and (iv) opportunities for role models (persons with lived experience, autistic adults and relatives) to inspire others and disseminate knowledge. Conclusions: These findings add valuable insights into the experiences of relatives of autistic adults and challenge the reader to have greater appreciation of the many roles relatives can contribute across time and in a variety of contexts. These perspectives add important information for those working with and planning provision for autistic adults. [ABSTRACT FROM AUTHOR]

Background: Frailty is a key issue in current healthcare delivery and falls is an important component. Care and support planning (CSP) is an established approach to managing long term conditions (LTCs) and has potential to provide more person-centred care for those at risk of falling. This qualitative evaluation aimed to understand the barriers and success criteria involved in incorporating falls assessment and management into the CSP process. Methods: CSP for falls prevention was implemented in eight general practices in the North of England. Six of the eight practices participated in the qualitative evaluation. Seven group interviews were undertaken with staff (n = 31) that included practice nurses, health care assistants, nurses, and administrative staff (n = 2–8 per group). Observations of the falls and CSP training provided additional data. Interviews covered experiences and potential impacts of training, and processes of implementation of the programme, and were informed by normalisation process theory. Thematic analysis was undertaken using a team-based approach. Results: Although successfully implemented across the practices, how established CSP was and therefore 'organisational readiness' was an overarching theme that illustrated differences in how easily sites were able to implement the additional elements for frailty. The challenges, successes and impacts of implementation are demonstrated through this theme and four further themes: training resources and learning; positive impacts of the programme (including enabling easier conversations around 'frailty'); integrating work processes/work with patients; and dealing with uncertainty and complexity. Conclusions: Care and Support Planning services designed to target frailty and falls is feasible and can successfully be delivered in the primary care setting, if key enablers are promoted and challenges to implementation addressed from planning through to integration in practice. [ABSTRACT FROM AUTHOR]

The mental health needs of young people who offend have become more widely recognised and attempting to meet these needs is now a global priority for governments and health agencies. Young people who offend experience a range of complex difficulties and have significantly worse health and social outcomes than their mainstream counterparts. These problems usually persist and often increase in severity through adolescence and into later life. There is growing acceptance of the potential value of co-designing services that recognise and address problems to improve the outcomes of young people with mental health problems yet to date, this methodological approach remains relatively unexplored in forensic service provision. Experience-based co-design (EBCD) is an approach to healthcare improvement that enables staff and service users to jointly co-design services. Central to the approach is the idea that understanding the experiences of service users and the 'touchpoints' (e.g., critical points or moments) in their journey through a service are integral to service improvement. The aim of this study was to explore whether EBCD could be applied to facilitate recognition of, and service developments for, young people presenting in community forensic settings. Qualitative methods used in this study included: observational fieldwork in four police custody suites (n = 30 hours), in-depth interviews with staff in community forensic services (n = 13) and researcher staff (n = 7). In this paper, the challenges of applying EBCD in community forensic settings with this population were: working with and across agencies; gaining access to participants; understanding knowledge and power dimensions amongst participants and understanding the context. This paper argues that innovative approaches to discovering the touchpoints for young people who offend – a key component of the EBCD approach - through combining analyses of secondary data and direct observations in community forensic settings can facilitate engagement with these specialist services and so provide access to relevant information about a group (i.e., young people who offend) who may be unable to participate directly in the EBCD process. [ABSTRACT FROM AUTHOR]

Background: Dissemination is an under-researched activity that is important to researchers and funders and may have a role in creating conditions for implementation. We aim to study the impact of two animations shared via social media upon dissemination. Methods: We developed two short animations to increase the awareness of healthcare positional leaders of work undertaken to enhance a much-used implementation intervention. We measured both how frequently the related articles were accessed, and engagement with the research team, before and after the intervention. We analysed variation over time using statistical process control to identify both trend and periods of significant change. Results: We found evidence that the animation increased how frequently the articles were accessed, with a significant increase (p = <0.01) during the two weeks after release of each animation. One animation was associated with an increase in positional leaders' engagement with the research team. Conclusions: Animations shared via social media can enhance dissemination. We describe lessons from the work to develop the intervention and support calls for work to increase the understanding and adoption of effective dissemination interventions. Our findings provide support for further work using randomised study designs. [ABSTRACT FROM AUTHOR]

Autistic children grow to become autistic adults, and autism is increasingly diagnosed in adulthood and later life. This qualitative study aimed to understand experiences of autism throughout adulthood. A national cohort study of autistic adults and relatives of autistic adults (ASC-UK), enabled purposive recruitment of a diverse sample. Semi-structured interviews were conducted with 29 autistic adults (aged 20–71 years), mostly diagnosed in adulthood, and 16 relatives (aged 31–81 years) of autistic adults diagnosed across both childhood and adulthood (including some with learning disability). Interview topics included health, relationships, education, employment, quality of life and everyday experiences. Thematic analysis of the accounts of the autistic adults identified six key themes relating to their experiences: (1) diagnosis as validating yet limiting; (2) supportive and non-supportive social agents; (3) the "invisibility" of the needs of autistic adults; (4) health in the context of autism; (5) staying 'outside' the circle; and (6) multiple lives with autism. Data from relatives about autistic adult experiences gave additional perspectives on these themes. Experiences reported in other studies–of 'difference' from others, challenges of social engagement, and learning to 'conform' to society's expectations–were evident and relevant to male and female autistic adults, across all age groups, and unrelated to stage of life when diagnosed. Some expressed disappointment with their lives, but others were proud of their achievements. Education and employment, whilst challenging for many, were also rewarding for some. Health care and social services were often experienced as inaccessible, inappropriate, or lacking understanding of the individual's needs. We conclude that greater public understanding of autism as experienced in adulthood is needed. Key priorities are improving the availability of 'appropriate' health and social care services for autistic adults and families, and providing practical support to enable enhanced participation in life. [ABSTRACT FROM AUTHOR]

Background: In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this. Methods: A systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties. Results: Ten instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer’s Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population. Conclusion: The CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties. [ABSTRACT FROM AUTHOR]