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This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole\u2010person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self\u2010manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease. Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient\/family priorities should ultimately enhance therapy adherence. Lastly, patients\/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes.<\/jats:p>","DOI":"10.1002\/ncp.10966","type":"journal-article","created":{"date-parts":[[2023,4,28]],"date-time":"2023-04-28T09:55:51Z","timestamp":1682675751000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Advocating for a patient\u2010 and family centered care approach to management of short bowel syndrome"],"prefix":"10.1002","volume":"38","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3390-3869","authenticated-orcid":false,"given":"Vanessa J.","family":"Kumpf","sequence":"first","affiliation":[{"name":"Department of Pharmacy, Clinical Programs Vanderbilt University Medical Center  Nashville Tennessee USA"},{"name":"Center for Human Nutrition Vanderbilt University Medical Center  Nashville, Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0971-2517","authenticated-orcid":false,"given":"Marie L.","family":"Neumann","sequence":"additional","affiliation":[{"name":"Department of Surgery, Division of Transplant Surgery University of Nebraska Medical Center  Nebraska Omaha USA"},{"name":"Department of Communication Studies University of Nebraska\u2010Lincoln  Lincoln Nebraska USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Swapna R.","family":"Kakani","sequence":"additional","affiliation":[{"name":"The Gutsy Perspective  Alabama Huntsville USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,4,28]]},"reference":[{"key":"e_1_2_9_2_1","volume-title":"Institute of Medicine. 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