Experiences and Needs of Families Living With Acquired Brain Injury in South Australia: Stage 1 Research Report

Families4Families is an 18 month pilot peer support network for families living with acquired brain injury (ABI) in South Australia. Prior to its launch in January 2013, preliminary research has been conducted to identify the experiences and needs of families following ABI, in order to inform the design of the network. This research report presents findings from Stage 1. This first phase of research involved data collection through surveys and focus groups. 2502 surveys were posted to families who had received services from SA Brain Injury Rehabilitation Services (SA BIRS) between 2002 and 2012, with an additional 110 surveys distributed to SA disability and carer groups. 228 completed surveys were returned (10.6% response rate). 194 family members (110 partners, 56 parents, 8 siblings, 7 children, 6 friends and 4 ‘others’) in addition to 34 people with ABI completed the 22-question survey, providing a range of demographic and diagnostic data and identifying areas of unmet need. All survey respondents were invited to participate in focus groups to further explore experiences and needs, and provide feedback on how the Families4Families ABI Support Network could best be designed to meet these needs. Five focus groups were held across metropolitan and regional South Australia, gathering data from a total of 43 participants with ABI and their family members. Audio recordings were transcribed for analysis. Survey and focus group participants identified a range of ‘supports most needed’, with themes falling under two main categories: · Supports which could be provided by a family peer support network o counselling & emotional support o family support groups (including children, young carer and partner groups) o ABI education, information and resources o family social activities o help navigating the service system o early supports (within first year of ABI) o family advocacy support and training · Family-centered health and disability services o continued, coordinated, accessible and tailored services o respite o financial assistance o high quality support work o home maintenance and support o employment, housing and education o ABI mentors/volunteers. Results highlight a need for ongoing supports for the entire family following ABI, a number of which could be delivered through a family peer support model. These findings will inform the development and implementation of the Families4Families ABI Support Network, with Stage 2 of the research measuring the effects of participation over 18 months. This research project was funded by Julia Farr MS McLeod Benevolent Fund with the support of the Community Re-entry Program, Flinders University.