Public perspectives on acquired brain injury rehabilitation and components of care: A Citizens' Jury

Abstract

Background: Brain injury rehabilitation is an expensive and long-term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked 'What considerations are important to include in a model of care of brain injury rehabilitation?'

Methods: Qualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross-examined by jurors over two days.

Results: Key themes related to the need for a model of rehabilitation to: be consumer-focused and supporting the retention of hope; be long-term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made.

Conclusion: Instigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer-focused services that prepare individuals and their carers for the long term.

Patient and public contribution: As jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.

Keywords: consumer participation; decision making; deliberative methods; health policy; traumatic brain injury.