Who are relatives? Young adults, relatives and professionals’ perceptions of relatives during the rehabilitation of young adults with a severe acquired brain injury

Abstract

Purpose

This paper explores the perception of “relatives” during the rehabilitation of young adults with severe acquired brain injury (SABI).

Methods

This longitudinal qualitative study followed eight young adults with a SABI from hospital discharge to a year and a half after discharge. The design encompassed professional records, interviews, and surveys, including a name generator list completed by the young adults and focus group interviews with both their families and professionals. We apply a sociological theoretical framework concerning friendship, and we employ social network analysis (SNA) methodology to capture, visualise, and analyse the young adults’ significant social relations.

Results

Social relations engaged as relatives during rehabilitation are to a large extent determined by the perceptions of professionals and the parents of the young adult. These perceptions contain a limited number of social relations, with priority given to biological and juridical ties. This might reflect the reduced social support available for the young adult, who initially had a much larger social network.

Conclusion

The authors suggest a professional rethinking of who “relatives” are as well as considering these social ties as dynamic.

Implications for rehabilitation

• Rehabilitation professionals must be aware of and pay attention to differing perceptions that exist as to who qualifies as significant social relations in order to reconsider the practical implementation of relative involvement.

• The perception of who relatives are during the rehabilitation process should be reconsidered and extended to include who the young adult perceive as significant social relations.

• Relatives are not a fixed entity and should be considered dynamically throughout the rehabilitation process.

• Social relations of the young adult must to a larger extent be considered during rehabilitation to prevent social isolation in the long run.

Keywords:

• Engagement
• rehabilitation
• relatives
• severe brain injury
• social network

Acknowledgements

We would like to thank all the participants who shared their time, perspectives, and stories in making this study possible.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Health Research Foundation of Central Denmark Region.