Authors' objectives: The workload service users 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 is reflected in policy and practice interventions that identify service users 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. Globally, there is a shift to encouraging people with a variety of health problems to engage in programmes of self-care. This makes sense in an economic and social environment in which health and social care services are perceived to be subject to unsustainable levels of demand and expectations of expenditure. What comes with this shift, however, is a complex rearrangement of responsibilities, skills and expectations of service users and their caregivers. This study is concerned with the ways in which lived experiences of service users’ and caregivers’ work of participation are shaped by interactions with experienced social inequalities (socioeconomic disparities in health and health care) and illness trajectories (disease progression over time, and their reflection in status passages). This work is central to understanding the ways in which illness, medical knowledge and practice, and healthcare professions and institutions are experienced.

Authors' results and conclusions: Searches identified 34,787 records. Following deduplication, 13,234 records were assessed for relevance, and after first-stage screening, 7782 records were excluded at this stage, leaving 5452 for further screening, and 279 of these met inclusion criteria and were included in the evidence synthesis. These showed that patients’ and caregivers’ lived experiences of illness trajectories were shaped by mechanisms of enabling agency (personal capacity, social capital, affective contributions of others), and their degree of existential threat, competence in managing processes of care, and caregiver responses to new responsibilities. Their degree of structural disadvantage was framed in terms of loss of income, employment and housing, and by the presence of stigma, rather than by intersectional position and socioeconomic status. This evidence synthesis maps intervention points to support service users and caregivers, and the trajectories of work that frame their effective participation in their care. We identify potential targets for interventions that could support their outward-facing work as they seek to mobilise agency, sustain personal capacity, maintain their social capital and draw on the affective contributions of others. Searches identified 279 articles that could be included in this evidence synthesis. Of these, 26 primary studies and 4 reviews focused on brain cancers; 23 primary studies and 9 reviews on young-onset dementia; 25 primary studies and 4 reviews on inflammatory bowel disease; 36 primary studies and 1 review on bipolar disorder; 78 primary studies and 10 reviews on schizophrenia; and 56 primary studies and 7 reviews on Parkinson’s disease. In analysing these, we sought the common features of a maximum variation sample of illnesses and their trajectories. Qualitative analysis of primary studies revealed a common set of service user and caregiver activities across all six index conditions. Their degree of structural advantage and disadvantage was framed in terms of micro-structural consequences of illness rather than societal-level social determinants. These included loss of income, employment and housing, and by the presence of stigma, rather than by intersectional position and socioeconomic status. We mapped the work of participating in care using biographical disruption theory, identifying stages in illness trajectories as pressure points at which interventions could be delivered. Candidacy and help-seeking: In all index conditions, service users and caregivers pointed to the limitations of diagnostic services and difficulties for professionals, service users and caregivers in interpreting symptoms that were often diffuse and vague at the beginning of illness trajectories. Diagnostic shock: All conditions were described as leading to activities that responded to perceived or actual threat from their illness. The most common of these was seeking information and extending understanding. Some conditions led to perceived existential threat and fear of the future, activities responding to this were much less well-characterised. Biographical and relational disruption: This is best characterised as departure from perceived normal health and called for service users and caregivers to develop symptom recognition and medication management skills. The mobilisation of caregiver contributions was central to this; and they were implicated in struggles over care and access to services, dealing with difficult interactions with health professionals and services, and supporting service users through difficult decisions and decisional conflicts. Biographical and relational erosion: Throughout illness trajectories, service users and caregivers experienced cumulative effects of stigma, role strain, and restrictions on mobility, employment and income. These led to the diminution of social networks and other relations over time. As symptom severity and disability increased, it also led to transfers of responsibilities to caregivers, and complex negotiations about the distribution of supportive work within families. Biographical and relational fracture: Increasing disease severity and deterioration called for greater investment in managing symptoms and mitigating social dislocation, but this work broke down in the terminal phases of brain cancers, dementia and Parkinson’s disease, and in very acute episodes of inflammatory bowel disease, bipolar disorder and schizophrenia. Biographical and relational repair: Throughout illness trajectories, service users and caregivers performed activities that were outward-facing. They sought to acquire skills in self-management and attempted to build productive relations with health professionals who were sometimes described as hostile or indifferent to them. Importantly, they sought to enhance their social capital, seeking to rebuild social networks, and to manage stigma and protect their identities as competent social actors through controlled disclosure of information about their condition. Qualitative analysis of primary studies revealed the parallel structures of service users and caregivers’ systemic trajectories. Here, service users’ and caregivers’ lived experiences of illness trajectories were shaped by mechanisms of enabling agency which form a bridge between them: personal capacity, social capital, affective contributions of others. We used the following constructs to map supportive interventions proposed by review authors. These set out a range of supportive interventions that are needed by caregiver and service users as they pass through illness trajectories. These set out a range of supportive interventions that are needed by caregiver and service users as they pass through illness trajectories. Once again, these describe domains of service user and caregiver experience that merit both further research and the development of policy and practice interventions. Systemic trajectories: These consist of modifiable aspects of their experiences of health professionals and services. Policy and practice interventions are needed to improve access to diagnostic and specialist services, improve the quality of interactions with clinicians and supportive gatekeepers, and to better understand and target information needs of service users and caregivers. Personal capacity: Service users and caregivers possess varying degrees of personal psychological, social and economic resources. Policy and practice interventions are needed to reinforce their capacity to assert control over illness identities and trajectories. Access to psychological therapies would improve coping strategies. Interventions that improve access to continued employment and financial resources will reduce dependence and reinforce self-efficacy and self-esteem. Social capital: Service users and caregivers may be members of networks of social relations through which informational, material and symbolic resources flow. Policy and practice interventions that reinforce and restore social networks and improve mechanisms for communications add to relational solidarity between service users, caregivers and health professionals. Social networks can foster shared caregiving strategies through which caregivers can find respite support. Affective contributions: Service users’ and caregivers’ social relations with others are characterised by varying bonds of affection and moral obligation. Policy and practice interventions are needed to build practical skills to improve collaborative problem-solving and build and reinforce emotional resources. Interventions that support family and other informal networks increase their potential for sustaining wider practical and emotional support. Exhaustion and devitalisation of service users and caregivers is common, and access to respite care uncommon, and this is an important area where support is needed. Relational trajectories: Consisting of modifiable aspects of their subjective experiences of illness and care. Psychological interventions that support service users and caregivers in coping and adapting to loss, distress and existential threat are vital. Policy and practice interventions that mitigate decisional conflict about treatment pathways, and mitigate loss of control in the face of disease progression, loss of treatment effectiveness, and symptom exacerbation.

Authors' methods: Theory-informed qualitative evidence synthesis of primary qualitative studies, qualitative systematic reviews and meta-syntheses. Papers analysed using qualitative attribution analysis, and Event-State Modelling. Cumulative Index to Nursing and Allied Health Literature, EMBASE, MEDLINE, PsycInfo, Scopus and Social Care Online were searched from January 2010 to April 2021. Qualitative evidence synthesis to model core components of service user and caregiver work, and to identify common factors across index conditions, disease trajectories and service contexts. Our pragmatic search strategies led to a maximum variation sample of studies of lived experiences of index conditions but may have missed relevant studies. No papers with an explicit social care focus were discovered for brain cancer, bipolar disorder and inflammatory bowel disease. Most studies were descriptive, and samples and methods were often poorly described. Identification of studies We systematically searched for qualitative studies of the lived experience of three kinds of conditions: long-term conditions associated with significant disability (Parkinson’s disease and schizophrenia); serious relapsing–remitting disease (inflammatory bowel disease and bipolar disorder); and rapidly progressing acute disease (two common types of brain cancer – astrocytoma and glioblastoma – along with young-onset dementia). People aged > 18 years; diagnosed with brain cancers (glioblastoma and astrocytoma), young-onset dementia, inflammatory bowel disease, bipolar disorder, schizophrenia, Parkinson’s disease, and their caregivers. Studies of illness experiences within self-care programmes, healthcare systems and social care systems. We used a structured extraction instrument. We recorded country of origin, topic, sample size and data collection, sample composition (gender, age range and ethnicity), study design, mode of analysis and presentation of results. Within each paper for each index condition, clusters of service user and caregiver activity were identified and mapped in relation to inequalities, trajectories, and burdens using attribution analysis, and they were coded using a theory-informed framework to develop an iterative taxonomy of activities. The next phase of analysis was to perform an Event-State Analysis. Event-State Analyses are intended as precursors to causal network analysis. In this context, we mapped clusters of service user and caregiver activities against contexts of action, experienced trajectories, lifeworld resources and mechanisms that shape participation in care. We traced interactions between burdens, trajectories and inequalities, and presented these through Event-State Matrices for both data from primary studies and authors’ proposals for supportive interventions for service users and caregivers in secondary studies.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR130407

Year Published: 2025

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/HGTQ8159

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/HGTQ8159

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk