Title: EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? A qualitative synthesis
Funder: Department of Health and Social Care

Abstract: Being ill is challenging and may involve us having to perform procedures and exercises explained to us by health professionals. This could include: asking us to monitor, manage and record symptoms: take up different diets and physical activity; obtain and use different drugs, dressings and medical devices; develop expertise in using websites and information technology; seek help, access and coordinate input and support from health and social care services; sometimes we have to work out how we are going to pay for the services that we need. Sometimes, we need the help of family and friends with these tasks. _x000D_ _x000D_ How we get through these tasks depends on our capacity and our resources, including access to services, income, ethnicity, education, gender, and age. The kinds of illnesses we have, how they progress, and the demands that these make on us, mean that the things we need to do change over time. We call these changes trajectories. Most research on patient work has looked at a group of chronic diseases with long trajectories and gradually declining patient capacity. Much less is known about patient and caregiver tasks for patients with different trajectories. This research is a review of published studies looking at three three kinds of trajectory: (i) long-term conditions associated with significant disability; (ii) serious relapsing remitting disease; and (iii) rapidly progressing acute disease. _x000D_ _x000D_ First we will create a framework to identify, describe, and understand relevant aspects of published studies. Then we will extract relevant information from the studies by carefully reading and manually identifying and extracting key data, and then also by using a computer program that looks for particular kinds of words and phrases and makes associations between them (‘text mining’). The methods together will help us build a comprehensive map or model of common features of how patients undertake these tasks and their capacity across different kinds of conditions, their trajectories, incorporating service organisation and delivery, and patterns of social and economic disadvantage. Finally, we will work with groups of patients, caregivers and their advocates, and with health and social care professionals and managers to apply the model to the development of strategies to make it easier for people with complex health problems to undertake the tasks associated with their illness.

Lay abstract: Research question: how are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities._x000D_ _x000D_ 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._x000D_ _x000D_ 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)._x000D_ _x000D_ Methods: Qualitative evidence synthesis. The review will be conducted in four phases:_x000D_ _x000D_ (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; _x000D_ _x000D_ (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; _x000D_ _x000D_ (iii) Model core components and identify common factors across index conditions, disease trajectories, and service contexts. _x000D_ _x000D_ (iv) Scenario modelling with stakeholders to develop workload reduction strategies and person-centered service design for people with complex health problems._x000D_ _x000D_ 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._x000D_ _x000D_ 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE