'What they're not telling you': a new scale to measure grandparents' information needs when their grandchild has cancer.

OBJECTIVE

To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents' information needs regarding their grandchild's cancer.

METHODS

Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs.

RESULTS

Eighty-seven grandparents participated (mean age 65.02 years, range 46-81, 31% male). Grandparents' information needs were high, especially among young and paternal grandparents. Grandparents' greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported "high need"), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents' booklet, distributed at diagnosis and available online.

CONCLUSIONS

Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on 'second-hand' information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources.

PRACTICE IMPLICATIONS

Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.