{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T04:29:02Z","timestamp":1777523342311,"version":"3.51.4"},"reference-count":37,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2023,3,30]],"date-time":"2023-03-30T00:00:00Z","timestamp":1680134400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2023,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cross\u2010sectional online survey developed with patient facing organisations was circulated to parents of children with intellectual disabilities and\/or autism using an exponential and non\u2010discriminatory snowballing method for recruitment. A smaller sample were purposively sampled for their in\u2010depth experiences.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Services need more emphasis on holistic management. Listening to parents and treating them as experts is important.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.13101","type":"journal-article","created":{"date-parts":[[2023,3,30]],"date-time":"2023-03-30T10:28:32Z","timestamp":1680172112000},"page":"830-846","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Survey of parents of children with intellectual disabilities and\/or autism who experience chronic constipation"],"prefix":"10.1111","volume":"36","author":[{"given":"James","family":"Rooney","sequence":"first","affiliation":[{"name":"NHS South Central and West  Eastleigh SO50 5PB UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca","family":"Hodge","sequence":"additional","affiliation":[{"name":"NHS South Central and West  Eastleigh SO50 5PB UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jade","family":"Smith","sequence":"additional","affiliation":[{"name":"NHS South Central and West  Eastleigh SO50 5PB UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kelly","family":"Vanstone","sequence":"additional","affiliation":[{"name":"NHS South Central and West  Eastleigh SO50 5PB UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard","family":"Laugharne","sequence":"additional","affiliation":[{"name":"Cornwall Partnership NHS Foundation Trust  Truro TR1 3QB UK"},{"name":"Cornwall Intellectual Disability Equitable Research (CIDER) University of Plymouth Peninsula School of Medicine  Truro TR1 3QB UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rohit","family":"Shankar","sequence":"additional","affiliation":[{"name":"Cornwall Partnership NHS Foundation Trust  Truro TR1 3QB UK"},{"name":"Cornwall Intellectual Disability Equitable Research (CIDER) University of Plymouth Peninsula School of Medicine  Truro TR1 3QB UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,3,30]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1176\/appi.books.9780890425596"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.17918\/NAIRINTERSECTION2022"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.15770"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-3928"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2036.2010.04273.x"},{"key":"e_1_2_9_7_1","unstructured":"Brisendine A. E.(2017).Autism Spectrum Disorders and Social Ecological Models: Understanding How Context Drives Prevalence\u201d (Working Paper).https:\/\/scholars.org\/contribution\/how\u2010social\u2010and\u2010environmental\u2010factors\u2010affect\u2010diagnosis\u2010and\u2010treatment\u2010autism\u2010spectrum"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1744987119880234"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2022.07.021"},{"key":"e_1_2_9_10_1","unstructured":"Guldberg K. Wallace S. Bradley R. Perepa P. &Ellis L.(2022).MacLeod an investigation of the causes and implications of exclusion for autistic children and young people.https:\/\/www.birmingham.ac.uk\/documents\/college\u2010social\u2010sciences\/education\/reports\/causes\u2010and\u2010implications\u2010of\u2010exclusion\u2010for\u2010autistic\u2010children\u2010and\u2010young\u2010people.pdf"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apnr.2005.06.001"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/1362361320913671"},{"key":"e_1_2_9_13_1","unstructured":"Hunter D. J. McCallum J. &Howes D.(2018).Defining exploratory\u2010descriptive qualitative (EDQ) research and considering its application to healthcare. InProceedings of Worldwide Nursing Conference 2018(worldwide nursing conference 2018).http:\/\/nursing-conf.org\/accepted-papers\/#acc-5b9bb119a6443"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-018292"},{"key":"e_1_2_9_15_1","unstructured":"LeDeR2022https:\/\/www.kcl.ac.uk\/news\/2021-leder-report-into-the-avoidable-deaths-of-people-with-learning-disabilities"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2022.926681"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2008.17.Sup2.28718"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.3399\/bjgp22X720077"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF03391759"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra1114194"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2019.28.4.230"},{"key":"e_1_2_9_22_1","volume-title":"Constipation in children and young people: Diagnosis and management","author":"National Institute for Health and Care Excellence","year":"2017"},{"key":"e_1_2_9_23_1","unstructured":"National Institute for Health and Care Excellence. (2017b).Constipation in children and young people: diagnosis and management [NICE Guideline No. 99].https:\/\/www.nice.org.uk\/guidance\/cg99"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev.publhealth.28.021406.144007"},{"key":"e_1_2_9_25_1","unstructured":"Office for National Statistics. (2020).Population estimates for UK England and Wales Scotland and Northern Ireland: 2020.https:\/\/www.beta.ons.gov.uk\/peoplepopulationandcommunity\/healthandsocialcare\/disability\/adhocs\/13197autismprevalenceuk2020"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.mnm.0000168408.03133.e3"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12426"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.39007.760174.47"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2014.10.014"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neubiorev.2014.02.015"},{"issue":"353","key":"e_1_2_9_31_1","first-page":"514","article-title":"Encopresis in children: A cyclical model of constipation and faecal retention","volume":"41","author":"Swanwick T.","year":"1991","journal-title":"The British Journal of General Practice"},{"key":"e_1_2_9_32_1","unstructured":"The Autism Act(2009)https:\/\/www.legislation.gov.uk\/ukpga\/2009\/15\/contents"},{"key":"e_1_2_9_33_1","unstructured":"The Equality Act(2010)https:\/\/www.legislation.gov.uk\/ukpga\/2010\/15\/contents"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.2196\/24851"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.06.059"},{"key":"e_1_2_9_36_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0077273"},{"key":"e_1_2_9_37_1","doi-asserted-by":"publisher","DOI":"10.1177\/0145445508321880"},{"key":"e_1_2_9_38_1","volume-title":"The ICD\u201010 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines","author":"World Health Organization","year":"1992"}],"container-title":["Journal of Applied Research in Intellectual Disabilities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jar.13101","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,20]],"date-time":"2023-08-20T12:16:57Z","timestamp":1692533817000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jar.13101"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,3,30]]},"references-count":37,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,7]]}},"alternative-id":["10.1111\/jar.13101"],"URL":"https:\/\/doi.org\/10.1111\/jar.13101","archive":["Portico"],"relation":{},"ISSN":["1360-2322","1468-3148"],"issn-type":[{"value":"1360-2322","type":"print"},{"value":"1468-3148","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,3,30]]},"assertion":[{"value":"2022-06-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-03-20","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-03-30","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}