There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

Family caregivers of individuals with acquired brain injury (ABI) and other chronic disabilities typically experience long-term adjustment difficulties within the entire family system. Interventions to assist parents and spouses are rare, and for siblings and offspring even more so. Among the few existing interventions, only a very small number have been evaluated in any scientifically sound manner for effectiveness in alleviating stress and burden. A highly targeted literature search of family caregiver intervention studies identified 31 articles, only four of which were in brain injury, which met specific inclusion criteria. Randomized controlled trial studies of six types of family caregiver interventions were systematically assessed for their quality of design and evidence of effectiveness. The results revealed a body of literature lacking in methodological rigor. At present there is no strong research evidence supporting any specific intervention method for family caregivers of individuals with ABI or any of the other chronic condition groups surveyed, although an abundance of anecdotal, descriptive, and quasi-experimental support exists in the rehabilitation literature. This conclusion points to the need for launching new pilot studies and rigorous evaluations of caregiver intervention effectiveness, some of which are now emerging or in process in several locations across the United States.

A comprehensive pharmacological management programme addressing the multi-factorial underlying aetiology was successful in improving sleep, arousal and mood. The D-CCASP was found to be clinically and statistically sensitive to reported changes in cognitive-communication function in relation to improvements in sleep and daytime arousal. These findings suggest that management of sleep/wake disturbances and mood post-traumatic brain injury can potentially facilitate improvements in cognitive-communication function which may, in turn, facilitate participation in rehabilitation and community integration.

Approaches to predicting recovery of continuous memory in the acute period after traumatic brain injury that take into account multiple measures provide a more sensitive predictive index.

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