Psychosocial issues in children with primary intestinal failure and their families

Spagnuolo, Maria Immacolata; Chiatto, F.; Liguoro, Ilaria; Caiazzo, Maria Angela; Baiano, N.; Giannattasio, Antonietta; Officioso, Annunziata; Guarino, Alfredo

doi:10.5301/ntm.2013.11328

Cited by 2 publications

(3 citation statements)

References 7 publications

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“…In prior studies of pediatric IF using different methodologies, researchers found that high anxiety and stress levels may influence family functioning. 13,14 The present study in a large cross-section of IF families adds new data as to expectations for family HRQOL at different patient ages and provides the first associations between IF disease-specific factors and the family's quality of life.…”

Section: Discussionmentioning

confidence: 76%

Prospective evaluation of the family's health‐related quality of life in pediatric intestinal failure

Neam

Faino²,

O'Hara

et al. 2021

J Parenter Enteral Nutr

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Background: Due to altered nutrition regimens and complex medical needs, pediatric intestinal failure (IF) may have a powerful impact on health-related quality of life (HRQOL). Studies have shown that children with IF experience lower HRQOL. Data on the HRQOL of families of children with IF are lacking. Methods:We performed a prospective analysis of the HRQOL of families of children with IF in a regional intestinal rehabilitation program from 2011 to 2018. The Pediatric Quality of Life Family Impact Module (FIM) was administered annually to parents. FIM scores were regressed on risk factors using linear mixed-effect models that accounted for repeated surveys within families.Results: A total of 117 families completed 272 surveys. FIM scores increased with patient age across nearly all survey dimensions. Total FIM scores were lower when compared to families of healthy children (median differences = -5, P = .01) and similar to families of chronically ill children. While IF families reported major deficits in the Communication (-11, P < .001) and Worry (-17, P < .001) dimensions, they also reported higher Family Relationship scores (+7, P < .01). On multivariable regression, presence of a major comorbidity and four or more hospital admissions in the prior year were associated with lower family HRQOL (P < .05). Parenteral nutrition dependence was independently associated with lower scores in the Communication (-7, P = .03) and Daily Activities (-10, P = .02) dimensions. Conclusion:Families of children with IF experience a decreased HRQOL that may improve with patient age. Intestinal rehabilitation programs should address the HRQOL of families in addition to patients.

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Section: Discussionmentioning

confidence: 76%

Prospective evaluation of the family's health‐related quality of life in pediatric intestinal failure

Neam

Faino²,

O'Hara

et al. 2021

J Parenter Enteral Nutr

View full text Add to dashboard Cite

show abstract

“…Because of a sense of social isolation (in part due to the COVID‐19 pandemic) and a lack of access to trusted and high‐quality care for their child, many parents reported feeling alone in managing of their child's complex care needs. Research has reported poorer social functioning for parents of children with SBS or IF 6,12 and suggested a lack of support outside of the family as a potential barrier experienced by parents 24 . Although a lack of access to nursing care was not a problem uniformly across all survey respondents, 60% of the parents who reported this item as applicable perceived a lack of access to home nursing care as having a strong negative impact on their own well‐being.…”

Section: Discussionmentioning

confidence: 99%

“…Research has reported poorer social functioning for parents of children with SBS or IF 6,12 and suggested a lack of support outside of the family as a potential barrier experienced by parents. 24 Although a lack of access to nursing care was not a problem uniformly across all survey respondents, 60% of the parents who reported this item as applicable perceived a lack of access to home nursing care as having a strong negative impact on their own well-being. Research has found a significant gap in the number of allotted versus received nursing hours for families of children with complex medical needs 25 ; this unmet need translates to missed employment, lack of sleep and opportunities for respite, and high levels of stress for parents, 25,26 and drives hospital readmissions for children dependent on medical technology.…”

Section: Access To Resources and Supportmentioning

confidence: 93%

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

Neumann

Allen

Ladner³

et al. 2023

Nut in Clin Prac

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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.

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Psychosocial issues in children with primary intestinal failure and their families

Cited by 2 publications

References 7 publications

Prospective evaluation of the family's health‐related quality of life in pediatric intestinal failure

Prospective evaluation of the family's health‐related quality of life in pediatric intestinal failure

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

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