To report on the development and refinement of a questionnaire of personal recovery for use by older adults with bipolar disorder.

An integrated knowledge translation approach was used to structure collaboration of individuals with clinical, research and service users. Focus groups, online meetings and online feedback were used to support information sharing.

Knowledge users from across the UK including older adults with experience of bipolar, clinicians and academics.

A final draft of the Bipolar Recovery Questionnaire for Older Adults with bipolar (BRQ-OA).

Five service users and 15 stakeholders engaged with the study. The views and recommendations of the groups were integrated into the development of the BRQ-OA across four phases. Service users identified factors of personal recovery they felt had changed with ageing, including the impact of physical health and the importance of finding a purpose following changes to role. Collaboration with key stakeholders allowed for the development of a personal recovery questionnaire relevant to the experiences of older adults.

An integrated knowledge translation approach successfully structured engagement with key stakeholders to allow for active and meaningful engagement. Collaboration of individuals with experience of bipolar, clinicians and academics allowed for the development of the first questionnaire of personal recovery specifically adapted for older adults with bipolar. Future research is needed to validate the BRQ-OA in older adult samples so that it can be used in mental health services and intervention studies.

People with a learning disability face significant health and mortality inequalities as well as wider systemic inequities. Challenges in palliative and end of life care (PEOLC) include communication difficulties, lack of involvement in decision-making and multimorbidity. Early identification of PEOLC needs is challenging, impacting timely care planning. The study aims to (1) understand barriers and enablers to providing high-quality, accessible PEOLC for people with a learning disability, and identify effective service delivery models and interventions and (2) improve PEOLC quality and accessibility by developing robust guidance for health and social care services.

This is a mixed-methods study guided by the NHS England 2021 Ambitions Framework and adopting the Social Model of Disability. There are four workstreams: (1) a retrospective cohort analysis of the Clinical Practice Research Datalink; (2) a rapid scoping review; (3) field work in four study sites across England, involving (a) interviews with senior leaders and commissioners (n=up to 16) and informal stakeholder engagement conversations; (b) ethnographic case studies with people with a learning disability at the end of life (n=up to 20) and retrospective case reviews of people with a learning disability who have died (n=up to 40), using family and staff interviews and (c) development and piloting of methods for enabling systematic identification of PEOLC need, using experience-based co-design and (4) patient and public involvement (PPI) activities and a co-production group of 10 people with a learning disability to support data analysis and outputs. Data will be analysed using adapted framework analysis methodology. This is an inclusive, co-produced study with significant involvement of advisors and researchers with a learning disability as part of the study team.

Ethical approval has been obtained for workstreams 1, 3a and 3b. Significant attention has been paid to ensuring informed consent, making adjustments for capacity. Accessible information and consent forms will be used, involving consultees and adhering to the Mental Capacity Act for participants who lack capacity. Data security will follow General Data Protection Regulation rules. Dissemination will include patient exemplars, guidance and various resources, engaging stakeholders through multiple formats.

researchregistry10500.