Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study (Preprint)

Abstract

BACKGROUND Many people with Young Onset Dementia (YOD) may feel isolated. Peer support has the potential to improve social health but inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests many people with YOD miss out on the potential benefits. Online peer support could be useful as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. OBJECTIVE This study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. METHODS This mixed-methods study consists of four phases and follows the guidelines of the Medical Research Council (MRC) on complex interventions. Each phase consists of multiple sub-studies. This study focusses on the development stage of the MRC framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. Participants are people living with YOD and peer support facilitators. Qualitative research methods include interviews, focus groups, and open questions in an online survey. Quantitative methods include an online survey consisting of existing outcome measures. RESULTS This study is funded by the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie Actions – Innovative Training Networks, H2020-MSCA-ITN-2018. Grant agreement No 813196 and received ethical approval from the London Bromley Research Ethics Committee (21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis is expected to be finished by September 2022. CONCLUSIONS The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support and will be disseminated locally (UK) and internationally through dementia organisations, research networks, and academic institutions. CLINICALTRIAL N/A