How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? A qualitative synthesis
Study Code / Acronym
EXPERTS IIAward Number
NIHR130407Award Type
HS&DR Researcher LedProgramme
Health and Social Care Delivery ResearchStatus / Stage
ActiveDates
1 January 2021 -1 July 2023
Duration (calculated)
02 years 06 monthsFunder(s)
NIHRFunding Amount
£359,202.90Funder/Grant study page
NIHRContracted Centre
London School of Hygiene & Tropical MedicinePrincipal Investigator
Professor Carl MayPI Contact
Carl.May@lshtm.ac.ukPI ORCID
0000-0002-0451-2690WHO Catergories
Models across the continuum of careUnderstanding risk factors
Disease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 477 |
|---|---|
| Researcher | Reside Team |
| Published | 29/06/2023 |
Data
| Study Code / Acronym | EXPERTS II |
|---|---|
| Award Number | NIHR130407 |
| Status / Stage | Active |
| Start Date | 20210101 |
| End Date | 20230701 |
| Duration (calculated) | 02 years 06 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | London School of Hygiene & Tropical Medicine |
| Funding Amount | £359,202.90 |
Abstract
Research question: how are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities. Background: The workload patients and caregivers take on, and their capacity to do this work, when they engage with and participate in different kinds of care is important. It may play a key part in shaping the adoption and implementation of innovations in service delivery and organisation, utilisation and satisfaction with services, and the outcomes of care. This is reflected in policy and practice interventions that identify patients and caregivers as part of a team that consists of informal networks beyond provider organisations and the professionals within them in health and social care. Much work in this field has been aimed at patient and caregiver experiences of a narrow range of long-term conditions, and these studies have often focused on factors that motivate and shape adherence to self-care regimes. Aims and objectives: To review, compare, and synthesise qualitative studies of the lived experience of the work of patient and caregiver engagement and participation in mixed economies of self-care, health and social care that are differently shaped by interactions between experienced treatment burdens and social inequalities. To derive policy and practice implications for service redesign. Including: qualitative studies of the lived experience of three kinds of condition: long-term conditions associated with significant disability (Parkinson’s disease, schizophrenia); serious relapsing remitting disease (ulcerative colitis, bipolar disorder); and rapidly progressing acute disease (brain cancer, rapidly progressing dementia). Methods: Qualitative evidence synthesis. The review will be conducted in four phases: (i) Construction of a theory-informed coding manual to support comparative analysis of documentary data; systematic search of bibliographic databases to identify, screen and collect full-text papers; (ii) Comparative analysis of textual data from relevant studies using conventional manual coding techniques, and text mining sofware; construction of taxonomies of patient and caregiver work and capacity; (iii) Model core components and identify common factors across index conditions, disease trajectories, and service contexts. (iv) Scenario modelling with stakeholders to develop workload reduction strategies and person-centered service design for people with complex health problems. Timelines for delivery: Coding manual drafted, searches completed, and screening begun by month six. Manual coding and text mining commences in month four and the model completed by month 20. Work with stakeholders, reporting, and dissemination commences at month 18. Final report completed and submitted at Month 24. Anticipated impact and dissemination: Practitioners and researchers will be better placed to understand structural factors that shape treatment burden and capacity, and so affect patient activation. The second impact of this research will be to promising targets for service design, and for policy restructuring. Dissemination strategies include the promotion of workload reduction models to support patients and caregivers and their advocates, and policy briefs and peer-reviewed reports for practitioners, policy makers, and researchers.
Plain English Summary
To review, compare, and synthesise qualitative studies of the lived experience of the work of patient and caregiver engagement and participation in mixed economies of self-care, health and social care that are differently shaped by interactions between experienced treatment burdens and social inequalities. To derive policy and practice implications for service redesign. Including: qualitative studies of the lived experience of three kinds of condition: long-term conditions associated with significant disability (Parkinson’s disease, schizophrenia); serious relapsing remitting disease (ulcerative colitis, bipolar disorder); and rapidly progressing acute disease (brain cancer, rapidly progressing dementia)
Aims
To review, compare, and synthesise qualitative studies of the lived experience of the work of patient and caregiver engagement and participation in mixed economies of self-care, health and social care that are differently shaped by interactions between experienced treatment burdens and social inequalities. To derive policy and practice implications for service redesign. Including: qualitative studies of the lived experience of three kinds of condition: long-term conditions associated with significant disability (Parkinson’s disease, schizophrenia); serious relapsing remitting disease (ulcerative colitis, bipolar disorder); and rapidly progressing acute disease (brain cancer, rapidly progressing dementia)