Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Abstract

BackgroundChildren 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.MethodsA 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 convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being.ResultsTwenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals).ConclusionThe impact of a child's SBS on parent well‐being 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‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care.

The Anxiety Burden in Patients with Chronic Intestinal Failure on Long-Term Parenteral Nutrition and in Their Caregivers

“…Often there is a tendency to lose the original relational function with the family member, i.e., a wife caregiver tends to change from a wife to a mother/child kinship, causing her discomfort and anxiety. Differently, a male caregiver generally tends to preserve his role [ 21 , 22 , 23 ].…”

A Systematic Review of Quality of Life in Patients with Short Bowel Syndrome and Their Caregivers

“…Managing SBS can have significant mental health implications in addition to the potential reduction in QoL for caregivers. 11 …”

“…Managing SBS can have significant mental health implications in addition to the potential reduction in QoL for caregivers. 11 It is therefore important to assess the QoL of patients with SBS and their caregivers. QoL is a broad concept that encompasses the subjective perceptions, functionality, and experiences of the health and well-being of the patients.…”

“…These studies demonstrate that the QoL of patients with SBS and their caregivers is affected to varying degrees and requires targeted intervention and support. 9,11,[14][15][16] However, the lack of comparability between studies due to differences in patient populations and measurement tools impedes our comprehensive understanding of common issues. To date, no studies have systematically compiled QoL data for this population nor provided insights into the determinants affecting it.…”