ArticleJournal of mental health research in intellectual disabilities2024
A Qualitative Analysis of Family Caregiver Experiences Accessing Treatment for Self-Injurious Behavior in Individuals with Intellectual and Developmental Disabilities.
Article in Journal of mental health research in intellectual disabilities, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Characterisation of Challenging Behaviours and Associated Genetic and Neurological Features in Cardiofaciocutaneous Syndrome.Journal of intellectual disability research : JIDR · 2025Article
- Family Support Experiences of Adult Persons with Intellectual Disability and Challenging Behaviour: A Scoping Review of Qualitative Studies.International journal of environmental research and public health · 2025Article
- The critical insight of family caregivers of individuals with intellectual and developmental disability and severe self-injurious behavior.Developmental medicine and child neurology · 2025Article
- Prospective Characterisation of Age-Related Changes in Self-Injurious Behaviour in a Sample of Children With Global Developmental Delay Aged 2-12 Years.Journal of intellectual disability research : JIDR · 2025Article
- Self-injury and the treatment gap: An interdisciplinary exploration of beliefs about causal variables and treatment goals among caregivers, researchers, and clinicians.Journal of mental health research in intellectual disabilities · 2025Article
- Self-injurious behavior in individuals with intellectual and developmental disabilities: An interdisciplinary family systems review.Journal of family theory & review · 2024Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
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 ( Methods: In semi-structured virtual interviews, family caregivers discussed their experiences of working with providers to treat their child's or sibling'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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.