Survey of parents of children with intellectual disabilities and/or autism who experience chronic constipation.

PARENT attitudes; PARENTS of children with disabilities; CONSTIPATION; CROSS-sectional method; RESEARCH methodology; INTERVIEWING; HEALTH literacy; PSYCHOSOCIAL factors; AUTISM; STATISTICAL sampling; JUDGMENT sampling; INTELLECTUAL disabilities

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. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)