Survey of Parents of Children with Intellectual Disabilities and/or Autism Who Experience Chronic Constipation

Autor/inn/en	Rooney, James; Hodge, Rebecca; Smith, Jade; Vanstone, Kelly; Laugharne, Richard; Shankar, Rohit
Titel	Survey of Parents of Children with Intellectual Disabilities and/or Autism Who Experience Chronic Constipation
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 36 (2023) 4, S.830-846 (17 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.13101
Schlagwörter	Parents; Children; Intellectual Disability; Autism Spectrum Disorders; Multiple Disabilities; Chronic Illness; Human Body; Health; Physiology; Knowledge Level; Parent Attitudes; Risk; Services; Drug Therapy; Information Needs; Parent Child Relationship + Suchen Sie Ihr Suchwort? Eltern; Child; Kind; Kinder; Intellect; Disability; Disabilities; Verstand; Behinderung; Autism; Autismus; Multiple disability; Mehrfachbehinderung; Chronic disease; Chronische Krankheit; Menschlicher Körper; Gesundheit; Physiologie; Wissensbasis; Elternverhalten; Risiko; Dienstleistung; Information need; Informationsbedürfnis; Parents-child relationship; Parent-child-relation; Parent-child relationship; Eltern-Kind-Beziehung
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. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01