Paying attention to relatives of cancer patients: What can we learn from their online writings?

OBJECTIVE

Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online.

METHODS

We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives.

RESULTS

Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45% of the posts and group posters 64%). Blog posters found the disease-related topics more important than the group posters (45% and 29%).

CONCLUSIONS

This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics.

PRACTICE IMPLICATIONS

It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden.