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


Our experiences of illness are often complex. We may have to work hard too. This work can take the form of tasks that are delegated to us by health and social care providers. When we meet health and care professionals, we often find ourselves agreeing with them about the kinds of work that we need to do. These are called negotiated obligations. We may need 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. How we get through the work is affected by our capacity to do it, and that is shaped by the different personal and wider resources that we can draw on.

The work that we do does not just involve our negotiated obligations with health and social care professionals and organisations - it goes beyond that to include the things that we and our caregivers, family, friends and others volunteer to do to make our healthcare possible. These are called assumed obligations. All of this is also affected by the services that are available to us, and by the ways in which our chances in life are shaped by our 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 these factors change over time. We call these changes trajectories.

Most research on service user work has looked at a group of chronic diseases with long trajectories and gradually declining service user capacity. This means that much less is known about how service user and caregiver work plays out in other complex trajectories, how they are shaped by different kinds of services, and how people are impacted by different kinds of social and economic disadvantage.

To better understand service user work and capacity, and the different forces that shape them, we propose to perform an ambitious review of published studies that have sought to tell us about people’s everyday experiences of living with illnesses with three kinds of trajectory. These are long-term conditions associated with significant disability; serious relapsing remitting disease; and rapidly progressing acute disease. We will start by drawing on existing research to build a framework in which we can identify, describe, and understand relevant aspects of published studies. Then we will extract relevant information from them using two different techniques. We will do this by carefully reading and manually identifying and extracting key data, and we will also use a computer program that looks for particular kinds of words and phrases and finds links between them. This is called text mining. Combining manual analysis and text mining will enable us to make a comprehensive map or model of common features of service user work and capacity across different kinds of conditions, their trajectories, service organisation and delivery, and patterns of social and economic disadvantage. Finally, we will work with groups of service users, caregivers and their advocates, and with health and social care professionals and managers to apply the model to the development of strategies to reduce workload and promote service redesign for people with complex health problems.

Partners & Collaborators

London School of Hygiene & Tropical Medicine

University of Glasgow

Keele University

University of Southampton

York Health Economics Consortium

ARC Wessex

Lead Investigator
Investigating Team
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