A Family-Directed Approach to Brain Injury in Community Settings: The Development of a Positive Behaviour Support (PBS) Program

Author: Alinka Fisher

Fisher, Alinka, 2017 A Family-Directed Approach to Brain Injury in Community Settings: The Development of a Positive Behaviour Support (PBS) Program, Flinders University, School of Health Sciences

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Background and Aims: Family members often become the primary caregiver for individuals following an acquired brain injury (ABI), and have reported behavioural support as the highest unmet need. Behaviours of concern (BOC) are a leading concern in brain injury rehabilitation, with service providers unable to meet the neurobehavioural support demands in community settings. As such, there is a need to develop and evaluate supports that can be successfully implemented by everyday support people.

The overarching aim of this thesis was to examine how to enhance the capability of family caregivers to manage BOC presented by relatives with ABI in community settings. Family members are ideally positioned to be active members of the rehabilitation team as they are emotionally invested in the individual’s progress, and can provide important insight to optimise outcomes. Families have also reported a desire for further practical hands-on collaboration with healthcare professionals.

Methods: A multi-phase mixed methods design was utilised, comprising four research studies. Study one was a systematic review, which examined the evidence supporting family involvement within behavioural interventions for relatives with ABI in community settings. In study two, a Delphi was conducted, which sought feedback from key stakeholders (n=11) regarding current and best practices, and key intervention components considered important in a program aimed at supporting family caregivers to manage BOC in relatives with ABI. Results from study one and two informed the design of a Family-Directed Behaviour Management (FDBM) program. The FDBM program, which is based on a Positive Behaviour Support framework, was developed to support family caregivers manage BOC following ABI in community settings. In study three, a pre-test post-test pilot (n=2) examined the (a) feasibility and (b) acceptability of the FDBM program and outcome measures utilised for further development. Multiple assessments were conducted pre and post intervention, including a three-month follow up, to collect information about the BOC, levels of support needs and psychosocial functioning of family caregivers, and levels of caregiver burden experienced. Quantitative measures utilised included the Overt Behaviour Scale (OBS), the Sydney Psychosocial Reintegration Scale (SPRS), the Care and Needs Scale (CANS) and the Caregiver Appraisal Scale (CAS). A purpose-designed survey was also used to collect data regarding the family members perceived confidence in managing BOC, and a frequency measure to record the occurrence of BOC. The acceptability of the FDBM program was evaluated using questionnaires and semi-structured interviews directly following the education phase and individualised sessions, and at follow-up. In the final study, a survey was conducted, in which an additional six caregivers were recruited to review the FDBM Education Workbook and provide feedback regarding its accessibility and helpfulness.

Results: The systematic review supported family involvement in behavioural interventions for relatives with ABI, however, it did not reveal any validated management approaches with an emphasis on family involvement, or specific recommendations to guide family caregivers in this process. Findings of the Delphi study suggested that families are not using commonly recommended strategies to manage BOC. In addition, consensus was reached that there were only two service types in South Australia that were specific to supporting family caregivers with this issue.

Two participants completed the full FDBM pilot, during which they were trained to collect and analyse observation data, and implement and monitor strategies. Outcomes were measured over seven time points (pre, post and follow-up). Participants reported a reduction in frequency and intensity of BOC, high satisfaction with the program, and increased confidence in identifying strategies and responding to BOC. No meaningful changes in levels of caregiver burden were reported. The survey responses were positive, with a majority of families reporting the workbook as clearly presented, engaging and helpful.

Conclusion: Results suggest that despite the significant time commitment, the FDBM program may be a feasible and acceptable approach to increasing the capability of family caregivers in managing BOC following ABI. Larger scale studies are now required to examine the program’s effectiveness.

This multi-phase project has informed the development of a Family-Directed Approach to Brain injury (FAB) model, which provides a theoretical framework for supporting family caregivers as facilitators of change. The FAB model is based on principles of hope, family expertise, education/skill building, and family-directed intervention. With the current shift towards greater family collaboration, the FAB model defines potential active ingredients and provides a theoretical framework to guide treatment implementation. This model emphasises a focus on promoting family competence in supporting behavioural changes following ABI, rather than dependency on service systems.

Keywords: brain injury, family, caregiver, behaviour, community, positive behaviour support

Subject: Health Sciences thesis

Thesis type: Doctor of Philosophy
Completed: 2017
School: School of Health Sciences
Supervisor: Dr Michelle Bellon