Perceptions of social support and relationships while living with a brain tumour: a qualitative study

Abstract

Objective

Having a brain tumour can disrupt social roles and networks. Despite growing evidence on the significance of social support in adjustment to chronic illness, research rarely focuses on the role of relationships when coping with a brain tumour. The current study sought to explore individuals’ experiences of social support, and the dynamics within their social relationships, following a diagnosis of a brain tumour.

Methods

Interpretative Phenomenological Analysis (IPA) was used as a methodological framework. Participants were 12 individuals (83% female) aged 29-54 years diagnosed with primary brain tumour (83% low grade), on average 3.5 years post-diagnosis. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using IPA.

Results

Five themes were identified: Coping together in the family; Being concerned about others; Giving and receiving support; Needing to share the experience; and Negotiating independence. The results highlighted that the illness affected a whole network of closest relationships, and that coping was not an individual task.

Conclusion

Coping with the condition was deeply socially embedded. There was a cost associated with seeking support and participants did not always ask for it, in order not to burden the caregivers. Talking to others with similar diagnoses provided a sense of validation and belonging.

Keywords:

• Brain tumour
• chronic illness
• social support
• social relationships
• qualitative study
• IPA

Acknowledgements

The authors would like to thank the study participants for offering their time and insights into their experience. We would also like to thank the charities who facilitated participant recruitment.

Disclosure statement

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

The raw data are not publicly available due to ethical restrictions. The participants did not give consent for their raw data (i.e. complete transcripts) to be shared.

Additional information

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.