"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).
我们考察了祖父母在孙辈被诊断为癌症后的信息需求、偏好和沟通体验。祖父母从瑞士八家儿科肿瘤诊所招募，参与一项在诊断后3、6、12和24个月四个时间点进行的纵向调查以及定性访谈。测量内容包括医学和心理社会信息的信息需求（重要性和获得情况）、偏好（形式、来源、数量）、健康素养（HLS-Q12）以及社会人口学和癌症特异性特征。“未满足需求”定义为被评为重要但未获得的需求总数（范围：0-14）。半结构化访谈探讨了祖父母的实际沟通体验。调查数据采用描述性和推断性统计方法分析。访谈转录稿进行主题分析。41名祖父母完成了调查（61%为女性；平均年龄67.6±6.3岁），23名参与了访谈（57%为女性；平均年龄66.9±6.4岁）。医学信息的获得频率高于心理社会信息。核心医学主题的未满足需求较低，但复发（48%）、姑息治疗（47%）和远期效应（45%）除外。相比之下，心理社会信息的未满足需求更为常见，尤其是祖父母自身的支持需求（40%）、对孙辈的支持（44%）、对父母的支持（48%）和同伴支持（52%）。未满足需求数量随时间未见统计学显著变化。父母是首选（67%）且最常见的信息来源（90%），而来自医疗保健提供者的直接信息有限（14%）。大多数祖父母偏好书面信息（63%）。定性分析确定了四个相互关联的主题，表明祖父母的沟通体验受家庭动态和情感影响、信息获取情境以及个人偏好的塑造，凸显了量身定制和角色敏感沟通的必要性。祖父母的医学信息需求大多得到满足，而其心理社会信息需求经常未得到满足。他们可能受益于关于家庭现有支持选项的更好信息，这些信息应根据家庭动态、情感准备程度和情境情况以量身定制的方式传达。
We examined grandparents' information needs, preferences, and communication experiences following a grandchild's cancer diagnosis. 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. 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. 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.
Anica Ilic, Lea Imbach, Nadja Muehlebach, Pauline Holmer, Cristina Priboi, Marc Ansari, et al. "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).. Patient education and counseling. 2026; doi:10.1016/j.pec.2026.109811.
Anica Ilic, Lea Imbach, Nadja Muehlebach, Pauline Holmer, Cristina Priboi, Marc Ansari, et al (2026). "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).. Patient education and counseling. https://doi.org/10.1016/j.pec.2026.109811
Anica Ilic, Lea Imbach, Nadja Muehlebach, Pauline Holmer, Cristina Priboi, Marc Ansari, et al. "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).[J]. Patient education and counseling, 2026 doi:10.1016/j.pec.2026.109811.
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