Family Systems under Stress: Grandparents' Support in Pediatric chronic Diseases and Psychological Distress and Unmet Support Needs in Childhood Cancer
Year: 2026
Type: dissertation
Study design: Observational Study
Abstract: Objectives When a child is diagnosed with a chronic disease, disability, or cancer, the impact extends beyond the nuclear family to the wider family system, including grandparents. Despite their central yet often informal role, grandparents remain an under-researched population in pediatric health psychology. This thesis aimed to examine (1) the caregiving roles and types of support provided by grandparents of children with chronic conditions, (2) the trajectory and predictors of grandparents’ psychological distress during the first two years following a cancer diagnosis, and (3) grandparents’ perceived and received support, including unmet support needs. Methods A systematic literature search was conducted for aim (1) in PubMed, PsycInfo, SCOPUS, and CINAHL to identify peer-reviewed studies on grandparents’ caregiving roles for grandchildren (≤21 years) with chronic disease or disability. In addition, longitudinal empirical studies were carried out with grandparents of children recently diagnosed with cancer, who were recruited via parents and pediatric oncology clinics, alongside a comparison group of grandparents of survivors. Participants completed questionnaires at 3, 6, 12, and 24 months post-diagnosis. Psychological distress for aim (2) was assessed using the Brief Symptom Inventory-18, and for aim (3) perceived social support was measured with the Multidimensional Scale of Perceived Social Support. For aim (3) was also used open-ended questions captured received support and unmet needs. Quantitative data for aim (2) and (3) were analyzed using linear mixed models and regression analyses, while qualitative responses for aim (3) were examined using thematic analysis. Results Findings of the systematic review indicated that grandparents provide substantial pracitcal and emotional support to the ill child, parents, and broader family system. Although often positioned “on the sidelines,” they function as stable and reliable supporters. However, many report insufficient information about the child’s condition, highlighting a need for improved communication and inclusion in care processes. The quantitative Research showed that overall distress levels remained within normative ranges; however, fluctuations over time and specific risk factors were identified. Greater proximity to the hospital, younger age, and male gender were associated with elevated distress in certain domains, suggesting the presence of vulnerable subgroups requiring targeted psychosocial attention. Results of the support perceived and support needs indicated that Grandparents perceived generally reported high levels of family support, yet differences emerged by gender, partnership status, geographic proximity, and grandchild age. While family constituted the primary source of support, many grandparents expressed unmet needs for professional psychological support. Conclusion Overall, the findings highlight that grandparents are important relatives who act as a protective factor in the context of pediatric disease. Yet they also have needs for support that are not yet adequately addressed in practice. In their stabilizing role, most grandparents exhibit moderate levels of stress, although there are phases during therapy when stress increases. Furthermore, in their support-seeking role, grandparents desire more assistance from psychological professionals as well as opportunities to share experiences with other grandparents in similar situations. These results underscore the importance of further research on this topic to better strengthen grandparents in both their stabilizing and support-seeking roles in clinical practice.
Author: Gantner, Barbara
Language: English
Topic: Family Support in Illness
Subfield: Sociology and Political Science
Field: Social Sciences
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W7213889056