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.

Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation

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“…Health information is critical for caregivers to provide the most effective care for the patients [5]. Family caregivers commonly perform medical or nursing tasks [18].…”

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

“…Qualitative research is well suited to documenting personal experiences of those living with chronic health conditions. Through qualitative research, investigators can explore individuals' experiences with health care, understand unmet needs, and foster more nuanced and empathic health care practices that may be overlooked with quantitative inquiry [23][24][25][26][27][28][29][30][31]. Focus groups are a useful qualitative methodology for exploring the perceptions and experiences of a group of people who share some common interests or characteristics.…”

Do data from child protective services and the police enhance modelling of perinatal risk for paediatric abusive head trauma? A retrospective case-control study

“…Paediatric abusive head trauma (AHT), formerly known as shaken baby syndrome, is an inflicted injury to the skull or intracranial contents of a young child 1 2. It is a significant cause of death and disability1 3 with major long-term social and economic consequences 4 5…”