A Qualitative Analysis of Family Caregiver Experiences Accessing Treatment for Self-Injurious Behavior in Individuals with Intellectual and Developmental Disabilities

Introduction: There is evidence of a gap between individuals with intellectual and developmental disabilities (IDD) who need treatment for self-injurious behavior (SIB) and those who receive treatment. The purpose of this study (n = 15) was to begin to understand the treatment gap from the perspective of family caregivers. Methods: In semi-structured virtual interviews, family caregivers discussed their experiences of working with providers to treat their family member’s self-injury. Through a systematic process of quasi-inductive thematic analysis, researchers transcribed and analyzed the interviews and developed a working model of treatment pathways. Results: Caregivers described many barriers to treatment access. Themes include Caregiver Driven, Importance of the Provider-Caregiver Relationship, Beliefs and Perceptions about SIB, Practical Constraints, Knowledge Gaps, and Wait Until Crisis. Conclusion: The findings highlight the power of providers to support families coping with SIB in IDD. Specific ways providers can better facilitate treatment access are suggested. Future research directions should include provider interviews and focus groups and, ultimately, the development of interventions that consider access pathways as a key feature of any effective treatment plan.