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Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being

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Abstract

Goal of work

This paper describes a literature review conducted to identify important factors that have been investigated as explanations of variability in the health and well-being of parents of children with cancer. Our purpose was to build a literature base that could be used to guide and direct future research.

Materials and methods

Medline, Cinahl, EMBASE, PsycINFO, and Sociological Abstracts were searched from 1980 to 2005 using the keywords neoplasms; child(ren) aged 0–18 years; parent(s), caregiver(s), mother(s), or father(s). For papers that met the study inclusion criteria, sample characteristics and information about factors related to caregiver health, or the relationship between such factors, were extracted. The findings were organized according to the six main constructs that form the caregiving process and caregiver burden model: background/context variables; child characteristics; caregiver strain; self-perception; coping factors; and caregiver physical and psychological health.

Main results

Articles meeting the inclusion criteria totaled 57. We found substantial research showing that certain child characteristics (e.g., child behavior; time since diagnosis) and indicators of coping (e.g., family cohesion, social support, stress management) are related to parental psychological health. Other aspects of the caregiving process (e.g., parental self-perception, family-centered care, and physical health) have received less research attention.

Conclusion

Various limitations and gaps in the current literature were identified in our review. Future research to understand the complex interrelationships between factors involved in the caregiving process should examine hypotheses that are guided by a theoretical framework and tested using advanced statistical techniques.

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Acknowledgements

This research was supported by grants from the Canadian Cancer Society and the BC Children’s Hospital Telethon Foundation. Anne Klassen received salary support from the Canadian Institutes of Health Research and the Michael Smith Foundation for Health Research. Parminder Raina holds a Canadian Institute of Health Research Investigator award and an Ontario Premier’s Research Excellence award.

Figure 1 first appeared in the article by Raina et al. [4].

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Authors and Affiliations

  1. Department of Pediatrics, McMaster University, 1200 Main Street West, Hamilton, ON, L8N3Z5, Canada

    Anne Klassen

  2. Department of Clinical Epidemiology and Biostatistics, McMaster University, DTC, Room 308, 1280 Main Street West, Hamilton, ON, L8S 4L8, Canada

    Parminder Raina

  3. Department of Pediatrics, University of British Columbia, BC Children’s Hospital, Room L408, 4480 Oak Street, Vancouver, BC, V6H 3V4, Canada

    Samantha Reineking & Maureen O’Donnell

  4. Department of Pediatrics, Oncology Unit, University of British Columbia, BC Children’s Hospital, 4480 Oak Street, Vancouver, BC, V6H 3V4, Canada

    David Dix & Sheila Pritchard

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  1. Anne Klassen
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  2. Parminder Raina
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  3. Samantha Reineking
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  4. David Dix
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Correspondence to Anne Klassen.

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Klassen, A., Raina, P., Reineking, S. et al. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Support Care Cancer 15, 807–818 (2007). https://doi.org/10.1007/s00520-007-0243-x

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  • DOI: https://doi.org/10.1007/s00520-007-0243-x

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