Getting back to normal? Patients' experiences and expectations following major illness or injury

Most people at some stage in their lives have the experience of recovering from a serious illness or injury. The phrase 'getting back to normal' is often used to describe the progress or extent of recovery and carries with it social expectation that people will recover and that this will straightforward. Narrative accounts of illness suggest that the recovery may be more complex than this phrase suggests yet surprisingly little research has examined patients' experiences of this process. In addition, there has been much less research on patients' experiences of injury compared with that of illness. Sociological research had shown that most people have complex ideas about how illness originates (sometimes summarised as 'why me? 'why now?') and that such ideas influence their experiences as patients. Moreover, the current limited provision of formal care during convalescence, pressures to maximise hospital bed use and demands on primary and community health services mean that recovery takes place mainly in the private domain and this may contribute to its relative invisibility in social terms.

This study will fill these gaps by exploring patients' accounts of recovery in a number of different arenas including hospital experience, transition to home and uneven processes of resuming normal activities at home, work and elsewhere. The study will also examine how ideas about the origin or cause of the illness or injury in turn affect the process and experience of recovery for example: how an unexpected fall may affect someone's confidence and hence mobility; the absence of symptoms in the early stages of cancer creating fear of other as yet undetected 'silent disease'; or the experience of heart attack leading to an heightened appreciation of valued aspects of life.

This project will undertake a secondary analysis of 163 qualitative interviews from four datasets. Three datasets (on adult patients' experiences of heart attack, leukaemia and intensive care), with a total of 118 interviews, are from the archive of the Health Experiences Research Group (HERG), University of Oxford. The fourth dataset, with a total of 45 interviews, is from the UK Burden of Injury Study. All interviews in the four datasets follow a similar pattern from recognition of a problem, through help-seeking to treatment and its effects. These four datasets offer diverse types of patient experiences of illness/injury, treatment and recovery. There is opportunity to examine patients' experiences and expectations at two levels: within each dataset and across all four datasets. The samples for each of the four datasets are broadly representative in terms of gender, age and social backgrounds, and offer variation in the length of time that has elapsed between the illness/injury and the interview. The methodology will include thematic and narrative approaches to analysis.

The research will be conducted by three experienced academic sociologists, based respectively in the Centre for Research in Primary and Community Care (CRIPACC), University of Hertfordshire (Thomas) and the Department of Sociology, University of Surrey (Earthy and Sleney). This collaboration will draw on the complementary strengths and experience of these researchers and their institutions. Close contacts will be maintained with the original researchers at the HERG, University of Oxford and from the UK Burden of Injury Study.

The project will benefit academic research, notably in medical sociology; patients, health care practitioners, healthcare commissioners and policy makers; and employers and others involved in the lives of employees recovering from a serious health event. The research findings and implications for policy and practice will be discussed with stakeholders at a dissemination day conference held at the end of the project and disseminated via a website, conference presentations and in a range of publications for practitioner and academic audiences.

This project will generate knowledge and understanding of patients' experiences following three different situations of serious illness (heart attack, leukaemia and conditions leading to a stay in intensive care) and serious injury requiring hospital admission. This will have potential impact on healthcare policy, service planning and provision, and professional practice. The research findings will be of particular relevance to individuals and organisations concerned with patient recovery from the four types of health event studied. Potential beneficiaries from the research include: (1) those in the Department of Health, clinical commissioning groups and the health care sector concerned with the provision of support to patients recovering from a serious illness or injury; (2) voluntary organisations and patient groups, in particular those focused on the types of health event studied; (3) health care professionals working in primary care and hospital settings (notably intensive care, cardiology, clinical oncology, trauma and rehabilitation); (4) Royal Colleges and other institutions involved in professional leadership and training; (5) those concerned with return-to-work support and policies - including employers, human resources and occupational health staff and trade unions; (6) academics engaged in social research on experiences of illness, injury and recovery, rehabilitation, survivorship and professional practice.

The main benefits to government, health sector and voluntary sector organisations will be better knowledge of how people experience and make sense of recovery. The project will lead to an understanding of how the type of health event, the journey into patienthood, and personal characteristics such as gender, age and socio-economic circumstances and resources may create variations in experiences of recovery and the types of support required and valued. The research findings will be relevant to service planning at a national and local level, the co-ordination of primary and secondary care, and projects focused on specific types of health event.

The project will have a potential impact on professional practice by illustrating how lay understandings may differ from those of health care professionals and how the style and content of professional-lay interactions may affect patient experiences of recovery. Enhanced understanding of patient expectations of recovery will also improve the advice and support given to patients at different stages of the recovery process.

For employers, occupational health services, trade unions and others involved in the lives of employees recovering from a serious health event, the project will provide new understandings of the multi-dimensional nature of recovery, the difficulties people may face returning to paid employment, and the ways in which work environments may assist or hinder recovery.

The impact of the research on individuals recovering from a serious illness or injury and their families will be mainly indirect, through improved understanding and changes in provision and practice. Key audiences for dissemination of findings will include organisations that represent patients at a national and local level such as the Patients' Association and National Voices.

A website will be established at the beginning of the project to promote discussion and disseminate findings. A key task for the Advisory Group will be to advise the investigators on how to maximise the impact of the research for service provision and professional practice. Details of proposed outputs and dissemination activities - including a stakeholder dissemination day conference in central London, conference presentations and publications - are provided in the Impact Plan.

The project will contribute to capacity building via development of the skills of the Research Fellow at Surrey, particularly in giving conference papers and writing journal articles.