| Title: |
A Qualitative Analysis of Family Caregiver Experiences Accessing Treatment for Self-Injurious Behavior in Individuals with Intellectual and Developmental Disabilities |
| Language: |
English |
| Authors: |
Caroline L. Roberts (ORCID 0000-0002-1846-9654); Ashleigh H. Avina; Frank J. Symons |
| Source: |
Journal of Mental Health Research in Intellectual Disabilities. 2024 17(4):346-368. |
| Availability: |
Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals |
| Peer Reviewed: |
Y |
| Page Count: |
23 |
| Publication Date: |
2024 |
| Sponsoring Agency: |
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (DHHS/NIH) |
| Contract Number: |
44763 |
| Document Type: |
Journal Articles; Reports - Research |
| Descriptors: |
Intellectual Disability; Family Role; Caregivers; Developmental Disabilities; Self Destructive Behavior; Injuries; Intervention; Access to Health Care; Barriers; Allied Health Personnel; Role; Coping; Parents; Siblings; Behavior Problems |
| Geographic Terms: |
Colorado; Minnesota; Idaho; Florida; California |
| DOI: |
10.1080/19315864.2023.2223546 |
| ISSN: |
1931-5864; 1931-5872 |
| 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 (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. |
| Abstractor: |
As Provided |
| Entry Date: |
2024 |
| Accession Number: |
EJ1449525 |
| Database: |
ERIC |