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Chronicles of informal caregiving in cancer: using ‘The Cancer Family Caregiving Experience’ model as an explanatory framework

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Abstract

Background

Cancer caregiving has emerged as a dominant focus of research in recent years. A striking feature of this vast amount of literature is that it is static, examining certain points of the cancer trajectory, mostly the diagnosis and palliative care. Only The Cancer Caregiving Experience Model conceptualised the caregiving experience and explored the conceptual implications of cancer family caregiving research.

Aim

The data from this paper aim to empirically support the Cancer Caregiving Experience model, by exploring the cancer caregiving experience longitudinally.

Methods

Semi-structured interviews with 53 caregivers were carried out at patient’s diagnosis (T1), 3 months (T2), 6 months (T3) and 12 months (T4) post diagnosis.

Results

Analysis of 139 interviews generated four themes that reflected a complex and dynamic process. The themes that mapped those of the model were “Primary stressors”, “Secondary stressors”, “Appraisal”, “Cognitive-Behavioural responses” and “Health and Well Being”.

Conclusions

The study adds empirical support to The Cancer Caregiving Experience Model and confirms that different primary and secondary stressors influence how the caregivers perceive the caregiving demands, the coping mechanisms they employ and their health and well being during the cancer trajectory. Access to support services should be offered to all the caregivers from as early as the diagnosis period and take into account their specific needs.

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Conflict of interest

ZS is an external adviser for the National Institute of Clinical Excellence, is working closely with Novartis, Roche, GSK, AZ, BMS and Quintiles and PPD and has received honoraria from Merck & Co. AM has received honoraria from Merck & Co, Roche UK, ProStrakan and Bayer; received grants from Merck & Co; Roche UK and Acacia Pharma, and is an international advisory board member for Merck & Co. All remaining authors have declared no conflict of interest.

The authors have full control of all primary data, which can be reviewed by the journal upon request.

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Authors and Affiliations

  1. Christie NHS Foundation Trust, Manchester, UK

    Z. Stamataki & M. Burns

  2. School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK

    J. E. Ellis, J. Costello, J. Fielding & A. Molassiotis

  3. School of Nursing, Hong Kong Polytechnic University, Hung Hom, Hong Kong

    A. Molassiotis

  4. Academic Palliative and Supportive Care Studies Group (APSCSG), Department of Health Service Research, University of Liverpool, Liverpool, UK

    J. E. Ellis

  5. The Christie NHS Foundation Trust, Block C, Withington Hall, Cotton Lane, Manchester, M20 4UX, UK

    Z. Stamataki

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  1. Z. Stamataki
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  2. J. E. Ellis
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  3. J. Costello
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  4. J. Fielding
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  5. M. Burns
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  6. A. Molassiotis
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Correspondence to Z. Stamataki.

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Stamataki, Z., Ellis, J.E., Costello, J. et al. Chronicles of informal caregiving in cancer: using ‘The Cancer Family Caregiving Experience’ model as an explanatory framework. Support Care Cancer 22, 435–444 (2014). https://doi.org/10.1007/s00520-013-1994-1

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  • DOI: https://doi.org/10.1007/s00520-013-1994-1

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