"It has never been exactly what I was looking for": information needs of grandparents after a grandchild's cancer diagnosis - results from a multicenter mixed-methods study (GROKids Project).
This multicenter mixed-methods study found that grandparents of children with cancer generally received core medical information but often lacked psychosocial, relapse, palliative-care, and late-effects information, with communication preferences shaped by family context and emotional readiness.
Open original publication →What the AI sees
This multicenter mixed-methods study found that grandparents of children with cancer generally received core medical information but often lacked psychosocial, relapse, palliative-care, and late-effects information, with communication preferences shaped by family context and emotional readiness.
Research significance
The evidence identifies persistent communication and psychosocial-information gaps among grandparents; it is reasonable—but not tested here—to hypothesize that tailored, role-sensitive written resources and clearer access to family support services could improve family support and psychosocial well-being during pediatric cancer care.
Source abstract
PURPOSE: We examined grandparents' information needs, preferences, and communication experiences following a grandchild's cancer diagnosis. METHODS: Grandparents were recruited from eight Swiss pediatric oncology clinics for a longitudinal survey at four timepoints, at 3-, 6-, 12-, and 24-months post-diagnosis, and qualitative interviews. Measurements included information needs (importance, receipt) for medical and psychosocial information, preferences (format, source, amount), health literacy (HLS-Q12), and sociodemographic and cancer-specific characteristics. "Unmet needs" were defined as total number of needs rated as important but not received (range: 0-14). Semi-structured interviews explored grandparents' lived communication experiences. Descriptive and inferential statistics were used for survey data. Interview transcripts were thematically analyzed. RESULTS: Forty-one grandparents completed the survey (61% female; mean age 67.6 ± 6.3 years), and 23 participated in interviews (57% female; mean age 66.9 ± 6.4). Medical information was more frequently received than psychosocial information. Unmet needs were low for core medical topics, except relapse (48%), palliative care (47%), and late effects (45%). In contrast, unmet needs were more common for psychosocial information, particularly grandparents' own support needs (40%), support for the grandchild (44%), support for parents (48%), and peer support (52%). No statistically significant changes in the number of unmet needs were observed over time. Parents were the preferred (67%) and most common information source (90%), whereas direct information from healthcare providers was limited (14%). Most grandparents preferred written information (63%). Qualitative analysis identified four interrelated themes showing that grandparents' communication experiences were shaped by family dynamics and emotional influence, information acquisition context, and personal preferences, underscoring the need for tailored and role-sensitive communication. CONCLUSIONS: Grandparents' medical information needs were mostly met, whereas their psychosocial information needs frequently remained unmet. They may benefit from better information about existing support options for families, communicated in tailored manner according to family dynamics, emotional readiness, and contextual circumstances.