Companions through cancer: the care given by informal carers in cancer contexts.

Thomas, Carol J. and Morris, Sara M. and Harman, Juliet C. (2002) Companions through cancer: the care given by informal carers in cancer contexts. Social Science and Medicine, 54 (4). pp. 529-544. ISSN 0277-9536

Abstract

This paper explores the care-giving experiences of informal carers in cancer contexts, drawing on both quantitative and qualitative data generated in a 3 year study in the UK on the psychosocial needs of cancer patients and their main carers. The study adopted a sociological approach to psychosocial needs, in contrast to dominant psychological and psychiatric perspectives on such needs in psycho-oncology. Data collection methods involved a descriptive cross-sectional survey of carers (an achieved sample of 262 respondents, with similar numbers of male and female carers) followed by in-depth guided interviews with a sub-sample of surveyed carers (n=32). Key findings are presented in three sections: (i) the characteristics of the survey and interview samples; (ii) the examination of the care work undertaken by informal carers; and (iii), the exploration of the emotion work undertaken by informal carers. Care work findings: additional care work demands were an important feature of informal carers’ experiences, although this varied with the stage of the patient's disease and with the presence of either co-morbidity in patients or morbidity in carers. Specific groups of carers expressed the need for help with particular practical tasks and with the personal effects of the burden of care work. Emotion work findings: carers of either gender worked hard to manage the emotions of the patient as well as their own feeling states, and these aspects of emotion work were intimately connected. Carers felt that they had to be, and often wanted to be, ‘strong’ and ‘positive’, and to try to maximise the sense of ‘life carrying on as normal’. In doing this emotion work, carers, especially spousal carers, often symbolically shared in the illness and presented the struggle with cancer as a joint one. A concluding section considers the significance of our findings for cancer service provision.