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Families4Families Stage1 Research Report – the full version of the report.

Stage 1 Summary Report – the summary version of the report.


Stage 1 Research Report

Exploring the Experiences and Needs of Families Living with Acquired Brain Injury in South Australia
December, 2012, Michelle Bellon, PhD, Ruth Crocker, Jen Farnden, PhD, Jaime Gardner.

Executive Summary

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.

Information was collected 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. An additional 110 surveys were 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’) and 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, needs, and provide feedback on how an ABI Family Support Network could be best designed to meet these needs. Four focus groups were held across metro and regional South Australia, gathering data from a total of 36 participants with ABI and their family care-givers. Audio recordings were transcribed for analysis.

Analysis of survey and focus group data on ‘supports most needed’ identified a range of themes, which fall under two main categories:

  • Supports which could be provided by a family peer support network
  • counselling & emotional support
  • family support groups (including children, young carer and partner groups)
  • ABI education, information and resources
  • family social activities
  • help navigating the system
  • early supports (within first year of ABI)
  • family advocacy support and training
  • Family-centered health and disability services
  • continued, coordinated, accessible and tailored services
  • respite
  • financial assistance
  • high quality support work
  • home maintenance and support
  • employment, housing and education
  • ABI mentors/volunteers.


Results highlight a need for ongoing supports for the entire family following ABI in South Australia, 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, an 18 month pilot program for families living with ABI by families living with ABI. Stage 2 of the research will measure the effects of participation in the Families4Families ABI Support Network.

On 5 November 2012 key research findings were presented at the Flinders University City Campus lecture theatre to a large audience of ABI, disability, health professionals and community members.

You can watch this presentation online here.  (Our apologies that we started this session a little late so please fast forward 6 minutes at the start, and that we therefore ran over at the end so the recording stops somewhat abruptly.)

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