Other Communication Commons^™

Exploring The Impact Of Pediatric Short Bowel Syndrome On Parent Well‐Being Using A Disease‐Specific Pilot Survey, Marie L. Neumann, Jessica Y. Allen, Amy Ladner, Swapna Kakani, Meaghann S. Weaver, David F. Mercer

Department of Communication Studies: Faculty Publications

Background: 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‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied.

Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a …

Advocating For A Patient‐ And Family Centered Care Approach To Management Of Short Bowel Syndrome, Vanessa J. Kumpf, Marie L. Neumann, Swapna R. Kakani

Department of Communication Studies: Faculty Publications

Patient‐ and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. 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 …

Exploring The Impact Of Pediatric Short Bowel Syndrome On Parent Well‐Being Using A Disease‐Specific Pilot Survey, Marie L. Neumann, Jessica Y. Allen, Amy Ladner, Swapna Kakani, Meaghann S. Weaver, David F. Mercer

Department of Communication Studies: Faculty Publications

Background: 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‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied.

Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a …

Advocating For A Patient‐ And Family Centered Care Approach To Management Of Short Bowel Syndrome, Vanessa J. Kumpf, Marie L. Neumann, Swapna R. Kakani

Department of Communication Studies: Faculty Publications

Patient‐ and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. 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 …