SKIBI – Supporting Kids In Brain Injury

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Study objectives: 1.To investigate children and families perspective on their experience when a family member has a brain injury 2.To understand if children perceive their needs were met as a significant other in the journey of a person with a brain injury. 3. To gain information on children and families perceptions of the optimum support system that should be offered including what, how, when and where. The aim of this research is to involve consumers, with a lived experience of Acquired Brain Injury (ABI), in how sub-acute Services can best support and educate children about brain injury. Qualitative interviews with children and family members will be the first phase of research which will aim at eliciting information about their lived experience of brain injury, any perceived lack of support/information and how services could have best supported their children. The second phase of the research (not included in this stage of the trial– another application/grant will be sought) is expected to thereafter develop an age-appropriate children’s brain injury education program or ‘tool’ which will encapsulate the topics reported through the qualitative interview. The purpose of this research is to address the gaps in resources and tools that professionals can use when supporting and educating children after a parent or significant person in their lives has a brain injury. Children can be a ‘forgotten’ component in someone’s rehabilitation as practitioners are often unsure of how to age-appropriately educate them as there are minimal resources available. This research will compile the information direct from consumers as to how brain injury in the family has affected them, how their lives have changed, how they feel, how they coped, how their relationships have been affected and what would have helped them understand brain injury better through their loved ones recovery/rehabilitation. With this information, not only will consumers have felt heard, they would have contributed essential information that will form the basis of the second phase of research which will be developing an education program or ‘tool’ that can be used in any sub-acute brain injury rehabilitation setting across the world. To ensure rigour of this research, 1. Interviews will be audiotaped and transcribed. 2. It will be important to ensure truth value, credibility and dependability by taking care that all descriptions reported are accurate. Each participant will be provided with a summary of their interview summary to check before coding begins (Krefting 1991). 3. Any discrepancies following member checking by participants will be altered ready for analysis. 4. Field notes consisting of observations during the audiotaped interviews need to be developed (Patton 1990). The three researchers will meet regularly to undertake coding (open, followed by axial, followed by selective) until all agree that all possible hypotheses have been considered and consensus has been reached.

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