Social support experiences and unmet needs of grandparents following a grandchild’s cancer diagnosis: A two-year longitudinal mixed-methods study (The GROkids project)

Objectives This explorative study examined perceived and received social support among grandparents of children diagnosed with cancer, factors associated with support, and unmet support needs during the first two years following diagnosis. Methods Grandparents were recruited across eight pediatric oncology clinics and completed questionnaires at 3 (T1), 6 (T2), 12 (T3), and 24 months (T4) after diagnosis. The Multidimensional Scale of Perceived Social Support (MSPSS) was administered at T1 and T3 to assess perceived support (overall scale and three subscales: Family, Friends, Significant Others). Open-ended items on received social support and unmet support needs were included at all timepoints. Quantitative data were analyzed using linear mixed models, and qualitative data using content analysis. Results A total of 41 grandparents participated ( M =68 years; 60% female). MSPSS scores indicated high support at T1 and T3. Grandfathers reported less overall support than grandmothers (b=-0.43; 95%CI [−0.89, 0.04]; p=0.071) and less support from Significant Others (b=−0.65; 95%CI [−1.22, −0.08]; p=0.024). Grandparents living in a different locality from their grandchild reported higher Family support than those living nearby (b=0.68; 95%CI [0.10, 1.25]; p=0.020). Those in partnerships reported more support of Significant Others than singles (b=-0.98; 95%CI [-1.28, 0.13]; p=0.023), this support was higher when the grandchild was younger (b=−0.06; 95%CI [−0.12, −0.002]; p=0.042). Family was the main source of support received, while additional professional help was desired. Conclusion The sources of social support varied during the first two years following a grandchild's cancer diagnosis. Despite strong family support, most grandparents expressed a need for psychological support.