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

Abstract

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.IMPLICATIONS FOR REHABILITATION Providing intervention directly to children and non-injured adults by clinical staff as early as the Intensive Care Unit and sub-acute rehabilitation after parental acquired brain injury is recommended to support their adjustment and improve family functioning. The development of age-appropriate and engaging tools via the use of technology is proposed to fill consumers identified gaps in brain injury support and education which could widen access and provide a flexible approach for support to be available anywhere, any time.