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Orphanet Journal of Rare Diseases

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Open Access 01-12-2022 | Research

Obstacles to home-based dietary management for caregivers of children with citrin deficiency: a qualitative study

Authors: Shuxian Zhang, Yun Du, Lingli Cai, Meixue Chen, Yuanzong Song, Lilan He, Ni Gong, Qingran Lin

Published in: Orphanet Journal of Rare Diseases | Issue 1/2022

Abstract

Background

Dietary management is the most important and effective treatment for citrin deficiency, as well as a decisive factor in the clinical outcome of patients. However, the dietary management ability of caregivers of children with citrin deficiency is generally poor, especially in East Asia where carbohydrate-based diets are predominant. The aim of this study was to identify the difficulties that caregivers encounter in the process of home-based dietary management, and the reasons responsible for these challenges.

Results

A total of 26 caregivers of children with citrin deficiency were recruited, including 24 mothers, one father, and one grandmother. Grounded theory was employed to identify three themes (covering 12 sub-themes) related to the dilemma of dietary management: dietary management that is difficult to implement; conflicts with traditional concepts; and the notion that children are only a part of family life. The first theme describes the objective difficulties that caregivers encounter in the process of dietary management; the second theme describes the underlying reasons responsible for the non-adherent behavior of caregivers; the third theme further reveals the self-compromise by caregivers in the face of multiple difficulties.

Conclusions

This study reflects the adverse effects of multi-dimensional contradictions on the adherence of caregivers to dietary management. These findings reveal that the dietary management of citrin deficiency is not only a rational process, rather it is deeply embedded in family, social, and dietary traditions.

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Title: Obstacles to home-based dietary management for caregivers of children with citrin deficiency: a qualitative study
Authors: Shuxian Zhang
Yun Du
Lingli Cai
Meixue Chen
Yuanzong Song
Lilan He
Ni Gong
Qingran Lin
Publication date: 01-12-2022
Publisher: BioMed Central
Published in: Orphanet Journal of Rare Diseases / Issue 1/2022
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/s13023-022-02437-z

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Obstacles to home-based dietary management for caregivers of children with citrin deficiency: a qualitative study

Abstract

Background

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Results

Conclusions

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