30 Exploring the lived experience of non-offending caregivers in paediatric abusive head trauma

Abstract

Background Abusive head trauma (AHT) is the most common cause of death due to physical abuse and despite prevention efforts, the incidence remains largely unchanged. For survivors, there can be multiple adverse health consequences with lifetime costs in the range of millions per child. While studies have focused on both short- and long-term outcomes for children with AHT, little is known about the experience of their non-offending caregivers (NOCs). Objectives To explore the lived experience of NOCs in paediatric AHT, including their perspectives on paediatric practice and prevention strategies. Design/Methods Institutional Research Ethics Board approval was obtained. Recruitment materials were shared through the National Centre on Shaken Baby Syndrome’s email, social media, and presentation at their Family Symposium. Inclusion criteria were North American NOCs in paediatric AHT, who lived with the offender. Using a phenomenological approach, six semi-structured interviews were conducted over Zoom for Healthcare, audio-recorded, transcribed, and rendered anonymous. Transcripts were coded using ATLAS.ti and classified by consensus into major themes and subthemes by the research team. Data collection and analysis continued until saturation was reached. Results All participants reported ongoing, multidimensional impacts of the trauma on their physical and mental health, years after occurrence. Primary themes identified included: (1) NOCs need compassion and support. Among other aspects of their experience, feeling judged and accused by healthcare providers (HCPs), compounded their trauma, (2) NOCs reported varied experiences within healthcare including a perceived lack of AHT knowledge among HCPs, and could be better served by an extension of multidisciplinary supports, (3) NOCs are resilient, devoted, and powerful advocates for their children all while managing negative emotions such as feeling betrayed, guilt and fear for their child’s life, (4) NOCs experienced challenges navigating systems and accessing supports, including financial, geographical and psychosocial barriers, and (5) There was varied exposure to AHT prevention materials, and many felt the stigma associated with AHT limits engagement with the subject, which may be a barrier to prevention efforts. Conclusion NOCs hold a unique and relevant perspective, not previously documented. While further research is required, our findings suggest that by extending compassion to caregivers and accessible multidisciplinary supports, the experience and overall wellbeing of NOCs could be improved. By better addressing the complex needs of NOCs, and increasing knowledge of AHT, HCPs have an opportunity to mitigate the negative impacts of the event and create better outcomes for children.