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Impact of a Child’s Celiac Disease Diagnosis and Management on the Family

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Abstract

Background

Little attention has been paid to family-wide repercussions of a child’s celiac disease diagnosis and concomitant gluten-free diet management.

Aims

We quantitatively and qualitatively describe positive and negative family-wide effects of a child’s celiac disease diagnosis and disease management.

Methods

We interviewed 16 families with at least one child currently following a gluten-free diet, with a biopsy-confirmed celiac disease diagnosis ≥ 1 year prior. Mothers and fathers independently rated child’s dietary adherence, concern about child’s health status, burden in caring for child’s dietary needs, and level of change in various aspects of life post- diagnosis. Children rated their own celiac-specific quality of life through a validated scale. Seventy-one in-depth semi-structured interviews were conducted with 16 children with celiac disease, 31 parents, and 24 siblings.

Results

Mothers and fathers rated the effects of their child’s celiac disease differently, with mothers reporting more lifestyle changes and heavier burden. Negative and positive themes emerged from the interviews. Mothers felt the burden of managing a gluten-free diet. Fathers felt guilty for carrying a celiac disease-associated gene and both fathers and siblings regretted limited food choices at restaurants and home. The need to be a more creative cook was seen as a positive effect by mothers. Fathers appreciated new family traditions. Siblings felt they had developed empathy for others. A framework is proposed to illustrate these family-wide interactions.

Conclusions

A child’s celiac disease diagnosis and disease management affects the entire family. Our results will inform family-centered interventions that maximize quality of life for families.

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Acknowledgments

This study was funded by the Provost Investment Fund at Teachers College Columbia University and in part by Columbia University’s CTSA grant No. UL1 TR000040 from NCATS/NIH. BL is supported by The Louis and Gloria Flanzer Philanthropic Trust. Dr. Anne Lee receives grant support from Dr. Schar.

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Authors and Affiliations

  1. Program in Nutrition, Department of Health and Behavioral Studies, Teachers College, Columbia University, 525 West 120th Street, Box 137, New York, NY, 10027, USA

    Carrie Russo, Randi L. Wolf & Patricia Zybert

  2. Department of International and Transcultural Studies, Teachers College, Columbia University, New York, NY, 10027, USA

    Hope J. Leichter

  3. Celiac Disease Center, Columbia University Irving Medical Center, New York, NY, 10032, USA

    Anne R. Lee, Norelle R. Reilly & Peter H. R. Green

  4. Mailman School of Public Health, New York, NY, 10032, USA

    Benjamin Lebwohl

Authors
  1. Carrie Russo
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  2. Randi L. Wolf
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  3. Hope J. Leichter
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  4. Anne R. Lee
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  7. Peter H. R. Green
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  8. Benjamin Lebwohl
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Corresponding author

Correspondence to Carrie Russo.

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Conflicts of interest

CR, HL, RW, PZ, NR declare they have no conflicts of interest. AL is on the Medical Advisory Boards for Dr Schar Foods and the University of Monash Low FODMAP Diet. BL serves as a consultant for Takeda, Innovate, and Anokion. PG consultant to Janssen/J&J, Innovate, ImmunogenX. Speakers bureau—Abbvie.

Ethnical approval

All procedures performed in this study involving human participants were in accordance with ethical standards of the institutional review boards at both Columbia University Medical Center and Teachers College, Columbia University and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Written informed consent was obtained from all individual participants included in the study.

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Russo, C., Wolf, R.L., Leichter, H.J. et al. Impact of a Child’s Celiac Disease Diagnosis and Management on the Family. Dig Dis Sci 65, 2959–2969 (2020). https://doi.org/10.1007/s10620-020-06316-0

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  • DOI: https://doi.org/10.1007/s10620-020-06316-0

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