Disclosure of a stigmatized identity: A qualitative study of the reasons why people choose to tell or not tell others about their traumatic brain injury

Abstract

Objective: To investigate what goals influence the decisions of people with a traumatic brain injury to disclose (or not to disclose) information about their brain injury.

Method: Ten people with a traumatic brain injury were interviewed about disclosing information about their injury to others. Thematic analysis was used to analyse the data.

Results: The report focuses on disclosure to people other than immediate family and close friends. Reasons for not disclosing included concern about negative reactions from others, feelings of shame about the injury, wanting to avoid getting distressed, wanting to fit in, lack of interest from others and the perception that the stress associated with the act of disclosing outweighed the benefits. Reasons for disclosing included obtaining emotional and practical support from others, the emotional release obtained from disclosure, the need to explain their behaviour to others and giving others the benefit of their experience. Experience of negative and stigmatizing reactions from others was common. Participants varied in their willingness to disclose.

Conclusion: Disclosure can have important advantages and disadvantages. Some people with a TBI may need support in making optimal decisions about disclosure.

• Neuropsychological rehabilitation
• self-disclosure
• stigma

Acknowledgements

We would like to thank all the participants and Headway staff who assisted with this research.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.