Living with a child who has a life-limiting condition: The functioning of well-siblings and parents

Tiina Jaaniste; Anjali Cuganesan; Wei Ling Audrey Chin; Sarah Caellainn Tan; Sandra Coombs; Maria Heaton; Sue Cowan; Phillip Aouad; Denise Potter; Philippa Louise Smith; Susan Trethewie

doi:10.1111/cch.12927

Living with a child who has a life-limiting condition: The functioning of well-siblings and parents

Child Care Health Dev. 2022 Mar;48(2):269-276. doi: 10.1111/cch.12927. Epub 2021 Nov 23.

Authors

Tiina Jaaniste^{1

2}, Anjali Cuganesan^{1

2}, Wei Ling Audrey Chin^{1

2}, Sarah Caellainn Tan^{1

2}, Sandra Coombs¹, Maria Heaton¹, Sue Cowan^{1

3}, Phillip Aouad^{1

2}, Denise Potter⁴, Philippa Louise Smith³, Susan Trethewie^{1

2}

Affiliations

¹ Department of Palliative Care, Sydney Children's Hospital, Randwick, New South Wales, Australia.
² School of Women's and Children's Health, University of New South Wales, Kensington, New South Wales, Australia.
³ Bear Cottage, Manly, NSW, Australia.
⁴ Department of Palliative Care, Children's Hospital at Westmead, Sydney, NSW, Australia.

PMID: 34766366
DOI: 10.1111/cch.12927

Abstract

Background: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning.

Methods: Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family.

Results: The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's < .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's < .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's < .126, all p's > .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's > .318, p's < .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = -.369, p < .05) and anxiety symptoms (r = -.473, p < .01) but not stress scores (r = -.074, p = .644).

Conclusion: Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported well-sibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.

Keywords: functioning; life-limiting condition; parent; sibling.

MeSH terms

Adult
Child
Family
Humans
Parents* / psychology
Psychosocial Functioning
Self Report
Siblings* / psychology