{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T08:54:16Z","timestamp":1784105656463,"version":"3.55.0"},"reference-count":27,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,5,28]],"date-time":"2023-05-28T00:00:00Z","timestamp":1685232000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["aspenjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Nut in Clin Prac"],"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health\u2010related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A pilot survey was developed using a community\u2010driven research design to measure the impact of disease\u2010specific items on parent\u2010perceived well\u2010being. The cross\u2010sectional survey, which included both closed\u2010ended and open\u2010ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed\u2010methods analysis of how individual items impacted parent well\u2010being.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty parents completed the survey. <jats:italic>Sleep interruptions<\/jats:italic>, <jats:italic>lack of support and resources<\/jats:italic>, and <jats:italic>psychological stressors<\/jats:italic> and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The impact of a child's SBS on parent well\u2010being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well\u2010being is a necessary first step for developing targeted interventions to support parents and provide family\u2010centered care.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ncp.11008","type":"journal-article","created":{"date-parts":[[2023,5,28]],"date-time":"2023-05-28T09:59:11Z","timestamp":1685267951000},"page":"154-167","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Exploring the impact of pediatric short bowel syndrome on parent well\u2010being using a disease\u2010specific pilot survey"],"prefix":"10.1002","volume":"39","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0971-2517","authenticated-orcid":false,"given":"Marie L.","family":"Neumann","sequence":"first","affiliation":[{"name":"Department of Surgery, Division of Transplant Surgery University of Nebraska Medical Center Omaha Nebraska USA"},{"name":"Department of Communication Studies University of Nebraska\u2013Lincoln Lincoln Nebraska USA"},{"name":"The Gutsy Perspective Huntsville Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4398-2449","authenticated-orcid":false,"given":"Jessica Y.","family":"Allen","sequence":"additional","affiliation":[{"name":"The Gutsy Perspective Huntsville Alabama USA"},{"name":"Department of Psychology Birmingham\u2013Southern College Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Ladner","sequence":"additional","affiliation":[{"name":"The Gutsy Perspective Huntsville Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Swapna","family":"Kakani","sequence":"additional","affiliation":[{"name":"The Gutsy Perspective Huntsville Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meaghann S.","family":"Weaver","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Palliative Care Children's Hospital and Medical Center Omaha Nebraska USA"},{"name":"National Center for Ethics in Health Care US Department of Veterans Affairs Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1557-1773","authenticated-orcid":false,"given":"David F.","family":"Mercer","sequence":"additional","affiliation":[{"name":"Department of Surgery, Division of Transplant Surgery University of Nebraska Medical Center Omaha Nebraska USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,5,28]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12328-017-0811-7"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00595-020-02207-z"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2337"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2248"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/0148607113517717"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2212"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/jpen.2461"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpedsurg.2021.09.039"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2021.712606"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006199-200311000-00008"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2022.05.049"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0037-1621737"},{"key":"e_1_2_9_14_1","unstructured":"From Insight to Advocacy: Addressing Family Caregiving as a Public Health Issue | The National Alliance for Caregiving. 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