Parental Perspectives on Social Health and Family Relationships of Children With Cancer: An Exploratory Study

PURPOSE: This study aimed to examine the strengths of relationships between cancer and social health and the primary variables to determine how a pediatric cancer diagnosis affects the social health of a child and family through the lens of parent perspectives measured by a parent Proxy. Childhood cancer is a complex event that impacts children and the family dynamic as the diagnosis and treatment experiences create life disruptions impacting physical, cognitive, social, and emotional health and well-being [1]. The associated cognitive, psychological, and psychosocial changes may lead to the inability to participate in valued and meaningful occupations for both the child and family [2]. Overarching principles of health, well-being, and participation through engagement in occupation, specifically social health, may be disrupted. The research question is, What is the social health of children with cancer as measured by the PROMIS Parent Proxy Profile 25 and the PROMIS Parent Proxy Family Relationships? Social health is defined as family and peer social participation. Each family will experience a diagnosis differently, making it important to gather evidence-based information regarding how families perceive participation after a diagnosis so occupational therapists can provide better interventions for children and families in order for them to participate in meaningful occupations.

DESIGN: The study utilized an exploratory, cross-sectional survey approach which was the basis for inferring trends to examine the social health characteristics of children with pediatric cancer. The inclusion criteria included parents/caregivers with children aged from 5-17 years old who have any type of pediatric cancer diagnosis, parents with children who are currently in treatment, or parents with children who have completed treatment in the past six months. The participants were recruited through online support groups for a sample of convenience.

METHOD: The study was conducted in an online survey format. The two measurement tools included the PROMIS Parent Proxy Profile 25 and the PROMIS Parent Proxy Family Relationships. Primary variables included physical function mobility, anxiety, depressive symptoms, fatigue, peer relationships, pain interference, and family. Kendall’s Tau correlation was used to measure the strength and direction of association between variables due to the nonparametric nature of the data and the small sample size. The information was analyzed through the Statistical Package for Social Sciences (SPSS) software.

RESULTS: The Kendall’s Tau correlation analysis found relationships between peer relationships and family relationships (r = 0.594, p = 0.001), depressive symptoms and peer relationships (r = -0.388, p = 0.023), pain interference and fatigue (r = 0.524, p = 0.001), fatigue and mobility (r = 0.358, p = 0.031), and family and income (r = -0.432, p = 0.021). These correlations suggest that the PROMIS variables mentioned above can impact a child’s social health after a cancer diagnosis.

CONCLUSION: The PROMIS variables often represent common cancer symptoms exhibited after a diagnosis which can lead to various occupational and social health disruptions. These correlations led to an initial understanding of the primary factors that impact the social health of children and families experiencing a pediatric cancer diagnosis [3].

IMPACT STATEMENT: Therapists can provide more effective therapy for children diagnosed with cancer by addressing the role of social contexts on family and child coping and occupational engagement. Addressing factors of depression, fatigue, mobility, and social participation can ensure quality service delivery and promote health and occupational participation through the cancer care continuum.

References

1. Naidoo, D., Gurayah, T., Kharva, N., Stott, T., Trend, S. J., Mamane, T., & Mtolo, S. (2016). Having a child with cancer: African mothers’ perspective. South African Journal of Occupational Therapy, 46(3), 49–54. https://doi.org/10.17159/2310-3833/2016/v46n3a9

2. Darcy, L., Enskär, K., Granlund, M., Simeonsson, R. J., Peterson, C., & Björk, M. (2015). Health and functioning in the everyday lives of young children with cancer: Documenting with the International Classification of Functioning, Disability and Health - Children and Youth ( ICF-CY). Child: Care, Health & Development, 41(3), 475–482. https://doi.org/10.1111/cch.12191

3. Elmer, T., & Stadtfeld, C. (2020). Depressive symptoms are associated with social isolation face-to-face interaction networks. Scientific reports, 10(1), 1444. https://doi.org/10.1038/s41598-020-58297-9