Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions. Research design: Qualitative exploratory study using a phenomenological approach. Method: Twenty-six participants were recruited from 12 families across the South Australian Brain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5-18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding. Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don't leave children in the dark, and (4) support for children is not one size fits all. Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

Automated summary

This qualitative exploratory study examined the impact of familial acquired brain injury on children and adult family members. The findings identified gaps in support services and recommended interventions to address these gaps.