Grandparents' pregnancy and neonatal loss network: Designing a website for grandparents bereaved by the perinatal loss of a grandchild

Objectives: When a child dies during the perinatal period, grandparents lack the resources to navigate their loss. We applied principles of co-creation and consumer-informed design to seek grandparents' expertise in determining (1) whether an internet-based resource would be suitable/beneficial for grandparents, (2) if so, what design features and content should be included and, (3) any barriers to utilising an internet-based resource. 

Method: In Stage One, 152 grandparents responded to a survey regarding health and eHealth literacy and website design and content. In Stage Two, a draft website was developed, with 21 grandparents providing feedback about the website's design, content and navigability. 

Results: Health and eHealth literacy measures indicated that >60% of participants had adequate literacy, and over 70% considered an internet-based resource useful. Grandparents provided design and content preferences, valuing diversity and peer support, and offered recommendations to optimise the website. Directing grandparents to public internet facilities would reduce barriers to access. 

Conclusion: A website is a suitable resource for grandparents seeking information and support following the loss of a grandchild in the perinatal period. Innovation: Grandparents see benefits in internet-based resources and can contribute to co-design. Further work could explore cultural differences.