Community in the pandemic: experiences and strategies by people with acquired brain injury and their families during COVID-19

Abstract

Purpose

This study explored the experiences of people with acquired brain injury and their families during the COVID-19 pandemic, focusing on how they maintained their communities and sense of belonging, the strategies they found helpful, and advice they have for improving service provision and community connectedness.

Methods

Semi structured interviews with pictorial mapping were conducted with ten adults with ABI and six of their family members. Participants responded to recruitment information circulated by a state-wide ABI peer support network in South Australia.

Results

Four primary themes were identified from the findings: (1) disruptions to routine; (2) social isolation; (3) using technology; and (4) strategies for staying safe and keeping well. Results are discussed using a social and urban geography lens and a conceptual framework of belonging to explore the experiences of people with ABI and their communities.

Conclusions

The study reinforces the role of robust peer/support networks to stay connected, stay well and support others. Government, health services and community groups must provide clear and accessible information and supports, and regularly reach out to ensure the safety and wellbeing of people with ABI and their families during the pandemic.

IMPLICATIONS FOR REHABILITATION

• People with acquired brain injury and their families experienced increased challenges to maintaining contact with their communities during the COVID-19 pandemic.

• The main challenges were disruptions to routine, social isolation, and use of technology for health, therapy and social contact.

• Strategies to support people with ABI to maintain connections, stay engaged, and access technology and information to stay safe and well during lock-down are presented.

Keywords:

• Acquired brain injury
• COVID-19 restrictions
• community
• isolation
• wellbeing

Acknowledgements

We gratefully acknowledge Yannoula Michael, Marie Erswell, Liz Bedford, and Kerrie Lante for their support. We thank all the families who generously participated in this study.

Disclosure statement

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

Notes

1 We use the term people with disability advisedly, however, we do note that the term disabled people is preferred in critical disability studies as it highlights the disabling actions of society.

Additional information

Funding

This study was funded through the Caring Futures Institute COVID-19 Collaborative Research Grant Scheme, Flinders University.