EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

May, Carl R; Chew-Graham, Carolyn A; Gallacher, Katie I; Gravenhorst, Katja C; Mair, Frances S; Nolte, Ellen; Richardson, Alison

Abstract

BackgroundThe workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes.AimsWith the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson's disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia).MethodsWe will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve: 1. Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers. 2. Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity. 3. Designing a model of core components and identifying common factors across conditions, trajectories, and contexts. 4. Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design.DisseminationWe will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers.

Citation

May, C. R., Chew-Graham, C. A., Gallacher, K. I., Gravenhorst, K. C., Mair, F. S., Nolte, E., & Richardson, A. (in press). EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis. NIHR Open Research, 3, 31. https://doi.org/10.3310/nihropenres.13411.1

• Journal Article Type: Article
• Acceptance Date: Jun 16, 2023
• Online Publication Date: Jun 16, 2023
• Deposit Date: Nov 6, 2023
• Publicly Available Date: Nov 6, 2023
• Journal: NIHR open research
• Print ISSN: 2633-4402
• Electronic ISSN: 2633-4402
• Publisher: Taylor and Francis
• Peer Reviewed: Peer Reviewed
• Volume: 3
• Pages: 31
• DOI: https://doi.org/10.3310/nihropenres.13411.1
• Keywords: Social Inequalities, Qualitative Evidence Synthesis, Illness Trajectories, Burden Of Treatment
• PMID: 37881470