ORCID
- Rohit Shankar: 0000-0002-1183-6933
Abstract
Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient facing organisations was circulated to parents of children with intellectual disabilities and/or autism using an exponential and non-discriminatory snowballing method for recruitment. A smaller sample were purposively sampled for their in-depth experiences. Results: Of 68 responses, people were open to discussing constipation and knowledgeable about risk factors. In the qualitative interviews, of 15 parents, they wanted to be treated as an expert in their child's care. They desired a service that was more responsive when in difficulty. While wanting more information about medication options, parents want a more holistic approach. Conclusions: Services need more emphasis on holistic management. Listening to parents and treating them as experts is important.
DOI
10.1111/jar.13101
Publication Date
2023-01-01
Publication Title
Journal of Applied Research in Intellectual Disabilities
Volume
36
Issue
4
ISSN
1360-2322
Keywords
bowel problems, constipation, developmental disabilities, neurodevelopmental disorders, service access
First Page
830
Last Page
846
Recommended Citation
Shankar, R., Rooney, J., Hodge, R., Smith, J., Vanstone, K., & Laugharne, R. (2023) 'Survey of parents of children with intellectual disabilities and/or autism who experience chronic constipation', Journal of Applied Research in Intellectual Disabilities, 36(4), pp. 830-846. Available at: https://doi.org/10.1111/jar.13101
