Experiences of caregivers of children with severe self-injurious behavior: An interpretive, descriptive study

Sara Breitbart; Han Yan; Karim Mithani; Carolina Gorodetsky; George M Ibrahim

doi:10.1111/dmcn.16185

Experiences of caregivers of children with severe self-injurious behavior: An interpretive, descriptive study

Dev Med Child Neurol. 2024 Nov 19. doi: 10.1111/dmcn.16185. Online ahead of print.

Authors

Sara Breitbart^{1

2}, Han Yan³, Karim Mithani^{4

5}, Carolina Gorodetsky⁶, George M Ibrahim^{1

4

5}

Affiliations

¹ Division of Neurosurgery, Hospital for Sick Children, Toronto, ON, Canada.
² Department of Health Research Methods, Evidence & Impact, McMaster University, Hamilton, ON, Canada.
³ Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
⁴ Department of Surgery, University of Toronto, Toronto, ON, Canada.
⁵ Institute of Biomedical Engineering, University of Toronto, Toronto, ON, Canada.
⁶ Division of Neurology, The Hospital for Sick Children, Toronto, ON, Canada.

PMID: 39563184
DOI: 10.1111/dmcn.16185

Abstract

Aim: To describe the experiences of children with self-injurious behavior (SIB) through the lens of family caregivers to inform the development of relevant interventions.

Method: SIB in children with autism spectrum disorder is challenging to understand and manage. Furthermore, our understanding of the impact of SIB on families is limited. We performed an exploratory qualitative study using interpretive description methodology. Semi-structured one-on-one interviews were conducted as the primary data collection technique. A purposive convenience sampling technique was used for the recruitment of participants through several clinics at one institution. Enrollment continued until 12 participants were recruited, at which time consensus was reached by the study team that sufficient data had been obtained to develop a depth of understanding of key elements of the caregiver perspective. Data were then analysed using a thematic analysis approach to develop overarching themes.

Results: Three main themes were developed from the analysis of the data: the pervasive impact of SIB; lack of resources to turn toward; and the presence of silver linings. Participants described in some detail the many elements of their children's condition that led to a pervasive impact far beyond the child themselves. This experience was augmented by stigma and the lack of available resources. Despite these challenges, there was a strong sense of resilience and hope.

Interpretation: Our study provides insights into the patterns of experiences of family caregivers of children with SIB. These results have far-reaching implications ranging from the clinical need for enhanced care and collaboration with affected families, the call for researchers to further develop effective treatments, and lastly highlighting the need to work with policymakers to advocate for resources to support children with SIB and their families.