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Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to explore how young people in child and adolescent mental health services (CAMHS) in the UK, Ireland, The Netherlands and Croatia, experienced leaving CAMHS and identified a range of factors impeding optimal discharge or transition to adult mental health services (AMHS). Design/methodology/approach: Interviews about discharge or transition planning, including what information was provided about their ongoing mental health needs, undertaken with 34 young people aged 17–24, all previous or current attendees of CAMHS. Some interviews included accounts by parents or carers. Data were thematically analysed. Findings: A number of previously well-documented barriers to a well-delivered discharge or transition were noted. Two issues less frequently reported on were identified and further discussed; they are the provision of an adequately explained, timely and appropriately used diagnosis and post-CAMHS medication management. Overall, planning processes for discharging or transitioning young people from CAMHS are often sub-optimal. Practice with regard to how and when young people are given a diagnosis and arrangements for the continuation of prescribed medication appear to be areas requiring improvement. Originality/value: Study participants came from a large cohort involving a wide range of different services and health systems in the first pan-European study exploring the CAMHS to adult service interface. Two novel and infrequently discussed issues in the literature about young people's mental health transitions, diagnosis and medication management were identified in this cohort and worthy of further study. [ABSTRACT FROM AUTHOR]

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P  < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P  < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting. [ABSTRACT FROM AUTHOR]