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

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  • Thomas, Carol
  • Morris, Sara M.
  • Harman, Juliet C.

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.

Suggested Citation

  • Thomas, Carol & Morris, Sara M. & Harman, Juliet C., 2002. "Companions through cancer: : the care given by informal carers in cancer contexts," Social Science & Medicine, Elsevier, vol. 54(4), pages 529-544, February.
  • Handle: RePEc:eee:socmed:v:54:y:2002:i:4:p:529-544
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    Citations

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    Cited by:

    1. Zhang, Amy Y. & Zyzanski, Stephen J. & Siminoff, Laura A., 2010. "Differential patient-caregiver opinions of treatment and care for advanced lung cancer patients," Social Science & Medicine, Elsevier, vol. 70(8), pages 1155-1158, April.
    2. Thompson, Tess & Coats, Jacquelyn & Croston, Merriah & Motley, Robert O. & Thompson, Vetta Sanders & James, Aimee S. & Johnson, LaShaune P., 2024. "“We need a little strength as well”: Examining the social context of informal caregivers for Black women with breast cancer," Social Science & Medicine, Elsevier, vol. 342(C).
    3. Leila Abou Salha & Julio Cesar Souza Silva & Cleusa Alves Martins & Cristiane Soares da Costa Araújo & Edinamar Aparecida Santos da Silva & Angela Gilda Alves & Cácia Régia de Paula & Flavio Henrique , 2021. "Caregivers of Individuals with Cancer in the COVID-19 Pandemic: A Phenomenological Study," IJERPH, MDPI, vol. 19(1), pages 1-11, December.
    4. Emslie, Carol & Browne, Susan & MacLeod, Una & Rozmovits, Linda & Mitchell, Elizabeth & Ziebland, Sue, 2009. "'Getting through' not 'going under': A qualitative study of gender and spousal support after diagnosis with colorectal cancer," Social Science & Medicine, Elsevier, vol. 68(6), pages 1169-1175, March.
    5. Daniel JW Jones & Kate Harvey & John P Harris & Laurie T Butler & Emma C Vaux, 2018. "Understanding the impact of haemodialysis on UK National Health Service patients’ well‐being: A qualitative investigation," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(1-2), pages 193-204, January.
    6. Broom, Alex & Cavenagh, John, 2010. "Masculinity, moralities and being cared for: An exploration of experiences of living and dying in a hospice," Social Science & Medicine, Elsevier, vol. 71(5), pages 869-876, September.

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