title: Caregivers' voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood.
abstract: Head injury is a leading cause of mortality and acquired neurological impairment in children. Head-injured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age. This qualitative study aims to describe the experiences of caregivers of children who sustained a serious head injury (particularly non-accidental head injury) before the age of 2 years. Caregivers were interviewed up to 15 years following the initial injury. Semi-structured interviews with 21 caregivers of 15 children (aged 3-15 years at the time of interview) were completed. Thematic analysis of interview data generated three key themes: impact, support and information. The study's findings reveal the broad impact of serious childhood head injury on caregivers, specifically the significant distress and burden brought about through lack of information, challenges in accessing support and inconsistent care. Recommendations for developing a quality 'model of care' and improving ease of access to supports for caregivers are provided.
authors.affiliation: The Flying Doctors - Ngā Manu Ārahi, Auckland, New Zealand.
authors.forename: Julie
authors.initials: J
authors.lastname: Wharewera-Mika
authors.affiliation: The Flying Doctors - Ngā Manu Ārahi, Auckland, New Zealand.
authors.forename: Erana
authors.initials: E
authors.lastname: Cooper
authors.affiliation: Section of Epidemiology and Biostatistics, School of Population Health, The University of Auckland, New Zealand b.kool@auckland.ac.nz.
authors.forename: Bridget
authors.initials: B
authors.lastname: Kool
authors.affiliation: Te Puaruruhau (Child Protection Team), Starship Children's Hospital, New Zealand.
authors.forename: Susana
authors.initials: S
authors.lastname: Pereira
authors.affiliation: Te Puaruruhau (Child Protection Team), Starship Children's Hospital, New Zealand Department of Paediatrics, Faculty of Medical and Health Sciences, The University of Auckland, New Zealand.
authors.forename: Patrick
authors.initials: P
authors.lastname: Kelly
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D006259:Craniocerebral Trauma / Q000451:nursing / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research
keywords: Caregivers; children; head injury; non-accidental head injury; thematic analysis; whānau/families