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

Patient Educ Couns. 2019 Mar;102(3):404-410. doi: 10.1016/j.pec.2018.11.004. Epub 2018 Nov 10.

Abstract

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.

Keywords: Cancer patients; Content analysis; Relatives; User-generated content.

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Caregivers / psychology*
  • Emotions
  • Family / psychology*
  • Female
  • Humans
  • Internet*
  • Male
  • Middle Aged
  • Neoplasms / psychology*
  • Netherlands
  • Self-Help Groups
  • Social Support
  • Writing*