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Health satisfaction and family impact of parents of children with cancer : a descriptive cross-sectional study

Al-Gamal, EA; Long, T; Shehadeh, J

Authors

EA Al-Gamal

J Shehadeh



Abstract

Background: The impact on parents of coping with a child who has cancer can be both severe and multifarious. Considerable distress persists throughout the treatment phase, persisting even after completion of treatment with heightened anxiety and stress associated with thoughts of recurrence or relapse.
Aim: The purpose was to investigate the links between parents’ satisfaction with the healthcare offered to their child with cancer and the impact on families of caring for such a child (including their health-related quality of life) in a Middle-Eastern country.
Study Design: A descriptive, correlational, cross sectional design was adopted. Arabic versions of parent-completed, validated instruments were completed by 113 parents whose child had cancer.
Results: Family relationship was found to be the best functioning domain, and Daily activities was seen to be the poorest. In general, parents expressed satisfaction with their child’s healthcare, but inadequate attention had been paid to their emotional needs. Cases in which children were reported to exhibit more emotional and behavioural problems correlated with greater negative impact on the family and disrupted family functioning.
Discussion: Parental quality of life was more severely affected than family quality of life. This results from mothers taking up most of the caregiver burden, and the impact on mothers was significantly greater than that on fathers. Children were protected from stress and anxiety by their mother. This burden on mothers resulted in deficits in emotional, social and physical functioning.
Practice and Policy Implications: Nurses and other health professionals should redress the balance between family-centred care strategies and child-centred approaches. Effort is needed to provide psychological support to parents by ensuring adequate preparation of staff, especially nurses, to recognise need and provide support in a therapeutic environment. Support may be needed for years after the diagnosis. This is a health professional role that may currently be neglected, and for which training is essential.

Keywords: Cancer Care, Children and Young People, Family Health, Health Policy, Mental Health, Nursing Therapeutics, Quality of Life, Quantitative Methods

Citation

Al-Gamal, E., Long, T., & Shehadeh, J. (2019). Health satisfaction and family impact of parents of children with cancer : a descriptive cross-sectional study. Scandinavian Journal of Caring Sciences, 33(4), 815-823. https://doi.org/10.1111/scs.12677

Journal Article Type Article
Acceptance Date Feb 10, 2019
Online Publication Date Mar 13, 2019
Publication Date Dec 21, 2019
Deposit Date Feb 11, 2019
Publicly Available Date Mar 13, 2020
Journal Scandinavian Journal of Caring Sciences
Print ISSN 0283-9318
Electronic ISSN 1471-6712
Publisher Wiley
Volume 33
Issue 4
Pages 815-823
DOI https://doi.org/10.1111/scs.12677
Publisher URL https://doi.org/10.1111/scs.12677
Related Public URLs https://onlinelibrary.wiley.com/journal/14716712
Additional Information Funders : Deanship of Scientific Research at The University of Jordan
Projects : Fatigue, health satisfaction and family impact of parents of children with cancer: a descriptive cross-sectional study