Chair of Health Services Research, Institute of Medical Sociology, Health Services Research, and Rehabilitation Science, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany.
Department for Psychosomatic Medicine and Psychotherapy, Center for Health Communication and Health Services Research (CHSR), University Hospital Bonn, Bonn, Germany.
Psychooncology. 2024 Nov;33(11):e70029. doi: 10.1002/pon.70029.
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.
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.
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 = 0.377, Pseudo-R = 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.
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.
有癌症患儿的家庭中的儿童可能会经历情绪、社交或身体问题。本研究旨在分析儿童、父母和家庭相关因素对儿童健康相关生活质量（HRQoL）的影响，以及儿童对父母癌症的体验。
作为一项多中心、前瞻性、干预性、非随机的混合方法研究“家庭-SCOUT”的一部分，以关怀和个案管理的形式制定了以家庭为中心的干预措施。在研究纳入时（基线）评估儿童的 HRQoL（KIDSCREEN-10）。进行描述性分析和家庭聚类调整线性混合模型分析。对问卷中开放式文本字段中报告的儿童体验进行定性编码。
共纳入 472 个有癌症患儿的家庭、472 位癌症患儿父母和 649 位儿童，其中 346 位纳入分析。儿童的平均年龄为 12.8 岁，48%为女性。家庭聚类调整的混合线性模型显示，儿童 HRQoL（因变量）与儿童年龄（-0.44，p=0.023，95%CI=-0.82 至-0.06）和家庭之间存在显著关联（ICC=0.377，Pseudo-R=0.443）。儿童体验到家庭状况的变化，如日常生活和所有家庭成员之间的沟通、父母一方的死亡、与 COVID-19 相关的困难以及支持性的社会关系。
儿童、父母和家庭相关因素似乎与儿童的 HRQoL 相关。关于儿童在父母癌症背景下的 HRQoL 和体验的研究强调需要采取多维和以家庭为基础的方法来支持这些儿童。
