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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
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 …
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
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 …