ArticleIntestinal Failure (New York, N.Y.)
Caregiver perspectives on barriers and facilitators to pediatric intestinal failure quality of life.
Article in Intestinal Failure (New York, N.Y.). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- Filling the gaps: Information sources and needs of patients with intestinal failure and their caregivers.Intestinal Failure (New York, N.Y.)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
Background: Caregivers of children with intestinal failure provide unique perspectives on their child's quality of life. This study explores the caregiver perception of barriers and facilitators affecting quality of life in children with intestinal failure and examines how caregiver quality of life may be affected. Material and methods: Semi-structured interviews were conducted with caregivers of children with intestinal failure and transcribed verbatim. An initial codebook was inductively developed by one coder and subsequently reviewed by two additional coders, who applied the codes to all transcripts. Thematic analysis was performed, and a conceptual framework was generated. Results: Interviews were conducted with 10 caregivers (9 biological mothers, 1 biological father). Quality of life domains may be grouped into 3 main categories: mental and psychological well-being, daily routine, and activities. Barriers to quality of life within these categories included differences from peers and siblings, mental health struggles, medical complications, procedures and hospitalizations, traditional school settings, swimming, and travel. Facilitators focused on adapting to these differences through support systems at home and school along with the medical care expertise gained over time. Caregivers faced significant impacts on their own quality of life in the areas of mental health, finances, and social activities. Conclusion: Caregivers offer valuable insight into the barriers and facilitators of their child's QOL within the context of intestinal failure. Multidisciplinary interventions aimed at supporting families as they adapt to their own unique lifestyle may significantly enhance quality of life for both children and caregivers.
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Registered trials
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