Family involvement in behaviour management following acquired brain injury (ABI) in community settings: A systematic review

This is an Accepted Manuscript of an article published by Taylor & Francis in BRAIN INJURY on 31 March 2015, available online: http://www.tandfonline.com/10.3109/02699052.2015.1004751. This article is under embargo for a period of 12 months from the date of publication.Objectives: To examine family involvement in the management of behavioural problems following ABI in the community. Research Design: Systematic literature review. Methods: Six electronic databases relevant to the field of brain injury were searched between 1980-2013. Citation indexes were used, and references from articles hand searched for further literature. Studies that met the broad inclusion criteria were screened for relevance, and articles selected for full-text review independently considered by two reviewers. Those found to be relevant were analysed using PEDro and McMasters critical appraisal tools. Results: Three hundred and three studies were identified after duplicates were removed and 56 were assessed for relevance, yielding 10 studies for review. Although the majority of studies were weak in design, 5 revealed significant findings supportive of family involvement in the management of behavioural problems following ABI, especially where interventions consisted of both educational components and individualised behavioural plans. Findings revealed no significant changes in family burden following behavioural interventions. Conclusions: There is limited research and lack of high evidence studies evaluating family involvement in behaviour management following ABI; therefore no conclusions can be drawn regarding its efficacy. More research is needed, with larger sample sizes and more rigorous design, including proper comparison groups

Positive behaviour support in frontotemporal dementia: a pilot study

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals’ relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants’ homes. Measures collected at baseline and post-intervention (M = 3.9 months) assessed: function of behaviours, challenging behaviours, and qualitative outcomes pertaining to the acceptability of the PBS approach. PBS was an acceptable intervention for all four dyads. “Sensory” and “tangible” were the most common functions contributing to the maintenance of behaviour changes, and aspects of apathetic and disinhibited behaviours improved following intervention. This study demonstrates the acceptability and potential benefit of a PBS programme to provide support in FTD. A more rigorous trial will be an important next step in developing improved services tailored to the needs of this unique population