Health-Related Quality of Life and Experiences of Minor Children With Parental Cancer-A Family-Based Multilevel Analysis of Determinants.

Abstract

Objective: Children in families with parental cancer may experience emotional, social or physical problems. The aims are to analyze child, parent and family-based determinants of children's health-related quality of life (HRQoL) and their experiences of parental cancer.

Methods: As part of a mixed-methods, multicenter, prospective, interventional non-randomized study "Family-SCOUT," a family-centered intervention in the form of care and case management was developed. Children's HRQoL (KIDSCREEN-10) was assessed at baseline (study inclusion). Descriptive analyses and family cluster-adjusted linear mixed models were performed. Qualitative coding of children's experiences reported in an open-ended text field of the questionnaire was performed.

Results: Four hundred and seventy-two families with 472 parents with cancer and 649 children were included in the study of which N = 346 were analyzed. The average age of the children was 12.8 years. 48% of the children were female. Family cluster-adjusted mixed linear model showed significant associations between children's HRQoL (dependent variable) and children's age (-0.44, p = 0.023, 95%-CI = -0.82 to -0.06) and between families (ICC^{null model} = 0.377, Pseudo-R² = 0.443). Children experienced changes in the family situation, such as daily routines and communication among all family members, death of a parent, COVID-19-related difficulties, and supportive social relationships.

Conclusions: Child, parent and family-based factors appear to be related to children's HRQoL. Research on children's HRQoL and experiences in the context of parental cancer underscores the need for a multidimensional and family-based approach to support these children.