Skip to main content

Advertisement

SpringerLink
Log in

Experiences and difficulties for primary caretakers of children with celiac disease — A qualitative study

  • Original Article
  • Published:
Indian Journal of Gastroenterology Aims and scope Submit manuscript

Abstract

Background

The purpose of this study was to understand the experiences of primary caretakers (PCTs) with a child diagnosed with celiac disease (CeD). There is paucity of research in understanding the experiences of PCTs of children with CeD in India.

Methods

Purposive sampling was used to select PCTs of CeD-affected children from a tertiary hospital in New Delhi. Ten PCTs took part in the investigation. To gather the data, semi-structured interviews were held with participants. Hindi was used to administer the interviews.

Results

The current study focused on the difficulties and worries PCTs experience in managing CeD. The main themes and sub-themes that emerged from the data were diagnosis of CeD (misdiagnosis of CeD, late diagnosis of CeD, feelings at the time of diagnosis, help from a doctor/nutritionist at the time of diagnosis); characteristics of CeD (CeD as a new disease, CeD as an allergy); attitude towards wheat (wheat as a poison, ignorance regarding negative effect of wheat); influence of significant others (making fun of the child, queries from others are a source of worry, non-acceptance of celiac disease by others and pressure to give gluten to the child); issues in following gluten-free diet (GFD) (fear of cross-contamination, distrust on GFD available outside home, GFD is expensive, making GFD is difficult, joint family, non-adherence to GFD, making non-GFD along with GFD); effect of CeD (financial effect of CeD, effect on physical and mental health of the child and PCT, effect on social life, change in family dynamics, eating restrictions); management of CeD (GFD for the whole family to manage CeD, family support to manage CeD, adhering to GFD, early diagnosis); and concerns (future marital concern for the child, cure of CeD, proper physical growth).

Conclusion

The current study gave an understanding of how PCTs dealt with a child’s CeD. The difficulties and worries of caretakers should be taken into consideration and appropriate recommendations made to lessen the strain of managing the child’s CeD and the daily obstacles associated with it.

Graphical abstract

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Data availability

Data available from the authors on reasonable request.

References

  1. What is celiac disease. Celiac Disease Foundation. https://celiac.org/about-celiac-disease/what-is-celiac-disease/. Accessed 29 December 2020.

  2. Ramakrishna BS, Makharia GK, Chetri K, et al. Prevalence of adult celiac disease in India: regional variations and associations. Am J Gastroenterol. 2016;111:115–23.  https://doi.org/10.1038/ajg.2015.398

  3. Makharia GK, Verma AK, Amarchand R, et al. Prevalence of celiac disease in the northern part of India: a community based study: celiac disease in India. J Gastroenterol Hepatol. 2011;26:894–900. https://doi.org/10.1111/j.1440-1746.2010.06606.x

    Article  PubMed  Google Scholar 

  4. Sajadi SA, Ebadi A, Moradian ST. Quality of life among family caregivers of patients on hemodialysis and its relevant factors: a systematic review. Int J Community Based Nurs Midwifery. 2017; 5:206–18.

    PubMed  Google Scholar 

  5. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115:e626-36. https://doi.org/10.1542/peds.2004-1689

    Article  PubMed  Google Scholar 

  6. Epifanio MS, Genna V, Vitello MG, Roccella M, La Grutta S. Parenting stress and impact of illness in parents of children with coeliac disease. Pediatr Rep. 2013;5:e19. https://doi.org/10.4081/pr.2013.e19

    Article  PubMed  PubMed Central  Google Scholar 

  7. Abreu Paiva LM, Gandolfi L, Pratesi R, et al. Measuring quality of life in parents or caregivers of children and adolescents with celiac disease: development and content validation of the questionnaire. Nutrients. 2019;11:2302. https://doi.org/10.3390/nu11102302

    Article  PubMed  PubMed Central  Google Scholar 

  8. de Lorenzo CM, Xikota JC, Wayhs MC, Nassar SM, de Souza Pires MM. Evaluation of the quality of life of children with celiac disease and their parents: a case-control study. Qual Life Res. 2012;21:77–85. https://doi.org/10.1007/s11136-011-9930-7

    Article  PubMed  Google Scholar 

  9. Sverker A, Ostlund G, Hallert C, Hensing G. Sharing life with a gluten-intolerant person–the perspective of close relatives.  J Hum Nutr Diet. 2007;20:412–22.  https://doi.org/10.1111/j.1365-277X.2007.00815.x

    Article  PubMed  Google Scholar 

  10. American Psychological Association. Publication manual of the American Psychological Association 2020: the Official Guide to APA Style. 7th ed. American Psychological Association; 2020.

  11. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101. https://doi.org/10.1191/1478088706qp063oa

    Article  Google Scholar 

  12. Clarke V, Braun V. Successful Qualitative Research: A Practical Guide for Beginners. London, England: SAGE Publications; 2013.

  13. Celiac disease: fast facts. Beyond celiac. https://www.beyondceliac.org/celiac-disease/facts-and-figures/. Accessed 6 March 2022.

  14. Zipser RD, Farid M, Baisch D, Patel B, Patel D. Physician awareness of celiac disease: a need for further education.  J Gen Intern Med. 2005;20:644–6.  https://doi.org/10.1111/j.1525-1497.2005.0107.x

    Article  PubMed  PubMed Central  Google Scholar 

  15. Zarkadas M, Cranney A, Case S,  et al. The impact of a gluten-free diet on adults with coeliac disease: results of a national survey. J Hum Nutr Diet. 2006;19:41–9.  https://doi.org/10.1111/j.1365-277X.2006.00659.x

    Article  PubMed  Google Scholar 

  16. Norström F, Lindholm L, Sandström O, Nordyke K, Ivarsson A. Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterol. 2011;11:118.  https://doi.org/10.1186/1471-230X-11-118

    Article  PubMed  PubMed Central  Google Scholar 

  17. Medical Home Portal. 2020. https://www.medicalhomeportal.org/living-with-child/after-a-diagnosis-or-problem-is-identified/a-new-diagnosis---you-are-not-alone/responding-to-a-diagnosis. Accessed 26 February 2023.

  18. Mehtab W, Singh N, Malhotra A, Makharia GK. All that a physician should know about gluten-free diet. Indian J Gastroenterol. 2018;37:392–401. https://doi.org/10.1007/s12664-018-0895-0

    Article  PubMed  Google Scholar 

  19. Myths and facts. Celiac India. 2014. http://celiacindia.org.in/about-celiac-disease/myths-and-facts/. Accessed 7 October 2019.

  20. Wheat allergy. Mayo Clinic. 2020. https://www.mayoclinic.org/diseases-conditions/wheat-allergy/symptoms-causes. Accessed 18 January 2022.

  21. Naiki Y, Horikawa R, Tanaka T, Child Health and Development Network. Assessment of psychosocial status among short-stature children with and without growth hormone therapy and their parents. Clin Pediatr Endocrinol. 2013;22:25–32.

  22. Celiac Disease Foundation. Celiac disease and gluten-related conditions. https://celiac.org/main/wp-content/uploads/2016/02/FINAL_Celiac-Disease-and-Gluten-Related-Conditions-Psychological-Health-Training-Manual.pdf. Accessed 17 March 2020.

  23. Vohra P. Psychological dimensions of celiac disease in India. J Psychol Med. 2016;38:266–8. https://doi.org/10.4103/0253-7176.183074

    Article  PubMed  PubMed Central  Google Scholar 

  24. Ciacci C, Zingone F. The perceived social burden in celiac disease.  Diseases. 2015;3:102–10. https://doi.org/10.3390/diseases3020102

    Article  PubMed  PubMed Central  Google Scholar 

  25. Panagiotou S, Kontogianni MD. The economic burden of gluten-free products and gluten-free diet: a cost estimation analysis in Greece.  J Hum Nutr Diet. 2017;30:746–52. https://doi.org/10.1111/jhn.12477

    Article  PubMed  Google Scholar 

  26. Rajpoot P, Makharia GK. Problems and challenges to adaptation of gluten free diet by Indian patients with celiac disease. Nutrients. 2013;5:4869–79. https://doi.org/10.3390/nu5124869

    Article  PubMed  PubMed Central  Google Scholar 

  27. Lee AR, Wolf RL, Lebwohl B, Ciaccio EJ, Green PHR. Persistent economic burden of the gluten free diet.  Nutrients. 2019;11:399.  https://doi.org/10.3390/nu11020399

    Article  PubMed  PubMed Central  Google Scholar 

  28. Silvester JA, Graff LA, Rigaux L, Walker JR, Duerksen DR. Symptomatic suspected gluten exposure is common among patients with coeliac disease on a gluten-free diet. Aliment Pharmacol Ther. 2016;44:612–9. https://doi.org/10.1111/apt.13725

    Article  PubMed  PubMed Central  Google Scholar 

  29. Garg A, Gupta R. Predictors of compliance to gluten-free diet in children with celiac disease.  Int Sch Res Notices. 2014;2014:248402. https://doi.org/10.1155/2014/248402

    Article  PubMed  PubMed Central  Google Scholar 

  30. Chauhan JC, Kumar P, Dutta AK, Basu S, Kumar A. Assessment of dietary compliance to gluten free diet and psychosocial problems in Indian children with celiac disease.  Indian J Pediatr. 2010;77:649–54.  https://doi.org/10.1007/s12098-010-0092-3

    Article  PubMed  Google Scholar 

  31. Sarkhy AA, El Mouzan MI, Saeed E,  et al. Clinical characteristics of celiac disease and dietary adherence to gluten-free diet among Saudi children.  Pediatr Gastroenterol Hepatol Nutr. 2015;18:23–9. https://doi.org/10.5223/pghn.2015.18.1.23

    Article  PubMed  PubMed Central  Google Scholar 

  32. Araújo HMC, Araújo WMC. Coeliac disease. Following the diet and eating habits of participating individuals in the Federal District, Brazil. Appetite. 2011;57:105–9. https://doi.org/10.1016/j.appet.2011.04.007

  33. Czaja-Bulsa G, Bulsa M. Adherence to gluten-free diet in children with celiac disease. Nutrients. 2018;10:1424.  https://doi.org/10.3390/nu10101424

    Article  PubMed  PubMed Central  Google Scholar 

  34. Sarkhy A, El Mouzan MI, Saeed E,  et al. Socioeconomic impacts of gluten-free diet among Saudi children with celiac disease. Pediatr Gastroenterol Hepatol Nutr. 2016;19:162–7.  https://doi.org/10.5223/pghn.2016.19.3.162

    Article  PubMed Central  Google Scholar 

  35. Valentine AZ, Knibb RC. Exploring quality of life in families of children living with and without a severe food allergy. Appetite. 2011;57:467–74.  https://doi.org/10.1016/j.appet.2011.06.007

    Article  PubMed  Google Scholar 

  36. Bollinger ME, Dahlquist LM, Mudd K, Sonntag C, Dillinger L, McKenna K. The impact of food allergy on the daily activities of children and their families. Ann Allergy Asthma Immunol. 2006;96:415–21.  https://doi.org/10.1016/S1081-1206(10)60908-8

    Article  PubMed  Google Scholar 

  37. MacCulloch K, Rashid M. Factors affecting adherence to a gluten-free diet in children with celiac disease. Paediatr Child Health. 2014;19:305–9. https://doi.org/10.1093/pch/19.6.305

    Article  PubMed  PubMed Central  Google Scholar 

  38. Rocha S, Gandolfi L, dos Santos JE. The psychosocial impacts caused by diagnosis and treatment of coeliac disease. Rev Esc Enferm USP. 2016;50:66–72. https://doi.org/10.1590/S0080-623420160000100009

    Article  PubMed  Google Scholar 

  39. Byström I-M, Hollén E, Fälth-Magnusson K, Johansson A. Health-related quality of life in children and adolescents with celiac disease: from the perspectives of children and parents. Gastroenterol Res Pract. 2012;2012:986475. https://doi.org/10.1155/2012/986475

    Article  PubMed  PubMed Central  Google Scholar 

  40. Rodrigues M, Yonamine GH, Fernandes Satiro CA. Rate and determinants of non-adherence to a gluten-free diet and nutritional status assessment in children and adolescents with celiac disease in a tertiary Brazilian referral center: a cross-sectional and retrospective study. BMC Gastroenterol. 2018;18:15.  https://doi.org/10.1186/s12876-018-0740-z

    Article  PubMed Central  Google Scholar 

Download references

Funding

This study was a part of the post-doctoral research supported and funded by the Indian Council of Social Science Research, New Delhi, India.

Author information

Authors and Affiliations

  1. Indian Council of Social Science Research, New Delhi, 110 029, India

    Sadaf Hameed

  2. Vivekananda College, University of Delhi, New Delhi, 110 092, India

    Vanita Sondhi

Authors
  1. Sadaf Hameed
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Vanita Sondhi
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

Sadaf Hameed — review of literature, data collection, data interpretation, drafting of the manuscript and review of the final manuscript. Vanita Sondhi — data interpretation, design of the study and review of the final manuscript.

Corresponding author

Correspondence to Sadaf Hameed.

Ethics declarations

Ethical approval and consent to participate

The study was approved by the Ethical Approval Committee, Vivekananda College, University of Delhi (Ref no. 01/2023). Informed consent was obtained from all individual participants included in the study.

Human ethics

The study was performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

Consent for publication

Consent for publication was obtained from participants.

Competing interests

SH and VS  declare no competing interests.

Disclaimer

The authors are solely responsible for the data and the contents of the paper. In no way, the Honorary Editor-in-Chief, Editorial Board Members, the Indian Society of Gastroenterology or the printer/publishers are responsible for the results/findings and content of this article.

Additional information

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 33 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Hameed, S., Sondhi, V. Experiences and difficulties for primary caretakers of children with celiac disease — A qualitative study. Indian J Gastroenterol 42, 791–799 (2023). https://doi.org/10.1007/s12664-023-01413-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12664-023-01413-0

Keywords

Search

Navigation