Experiences of Disclosure in Adolescents With Coeliac Disease

NCT04240340 | Completed

• 1 other identifier: PID:14574
• Study Type: observational
• Target: 7
• Locations: 1 country
• Sites: 1

Brief Summary

Being diagnosed with coeliac disease means that individuals can no longer consume things containing gluten, such as bread or cake, or they can become very ill. This can make situations involving food challenging, such as social situations or lunch at school. The investigators know that being diagnosed with coeliac disease as a teenager can be particularly upsetting and can lead to problems such as anxiety or low mood. Research suggests that when young people are worried about the impact of their condition on their life, they can find it challenging to tell their doctor or ask for support. The investigators would like to understand the experiences of young people with coeliac disease who attend the Paediatric Gastroenterology service at a local children's hospital. The investigators are particularly interested in the reasons why young people either feel able or unable to tell their doctor that they are experiencing difficulties relating to their wellbeing during their appointments, in order to improve support for young people. This study aims to recruit young people between the ages of 11 and 16, who are attending secondary school, to ask them about the things that make it easier or more difficult to share any concerns about their wellbeing with their doctor.

Conditions

Celiac Disease in Children; Celiac Disease; Celiac; Disclosure; Stigma, Social; Emotional Problem; Mental Health Wellness 1

Keywords

coeliac disease; celiac disease; adolescent; wellbeing; mental health; disclosure; stigma

Outcome Measures

Primary Outcomes (1)

• Semi-structured interview

  Includes questions around experiences of having coeliac disease and experiences of disclosing psychological difficulties to clinicians in the service.

  Lasts up to 90 minutes per participant.

Interventions

semi-structured interview OTHER

Semi-structured, face-to-face interviews will be carried out with participants.

Eligibility Criteria

• Age: 11 Years - 16 Years
• Sex: all
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

Participants recruited will be presenting to the Paediatric Gastroenterology department at a local Children's Hospital, as this project primarily aims to make improvements to this particular service based on its findings. The participants will have received the diagnosis of coeliac disease a minimum of three months prior to participation in the study. This is to allow time for them to process the diagnosis and for treatment to be established. They will also have had at least 1 follow-up appointment following diagnosis, as this will give them an experience to reflect on during the interview. Participants will need to speak fluent English as there is no funding available for interpreters or translation of documents and questionnaires.

You may qualify if:

• All participants:
• Male or Female, aged 11 - 16 years
• Have a medical diagnosis of Coeliac Disease
• Attending Secondary school
• Able to speak fluent English
• Have been under the care of the Paediatric Gastroenterology service at the local Children's Hospital for \>3 months and have had \>1 follow-up appointment
• For participants aged 11-15 only:
• Willing and able to give assent for participation in the study
• Parent/guardian is willing and able to give informed consent for their child's participation in the study
• For participants aged 16:
• Willing and able to give consent for participation in the study

You may not qualify if:

• Young people with comorbid gastro-intestinal conditions
• Young people currently receiving psychological support from any psychological service.

Sponsors & Collaborators

• University of Oxford: lead

Study Sites (1)

Oxford University Hospitals Nhs Foundation Trust

Oxford, OX3 9DU, United Kingdom

Location

Related Publications (15)

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  BACKGROUND

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  PMID: 21192795 BACKGROUND

• Ludvigsson JF, Agreus L, Ciacci C, Crowe SE, Geller MG, Green PH, Hill I, Hungin AP, Koletzko S, Koltai T, Lundin KE, Mearin ML, Murray JA, Reilly N, Walker MM, Sanders DS, Shamir R, Troncone R, Husby S. Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut. 2016 Aug;65(8):1242-51. doi: 10.1136/gutjnl-2016-311574. Epub 2016 Apr 18.

  PMID: 27196596 BACKGROUND

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  PMID: 1885070 BACKGROUND

• Mazzone L, Reale L, Spina M, Guarnera M, Lionetti E, Martorana S, Mazzone D. Compliant gluten-free children with celiac disease: an evaluation of psychological distress. BMC Pediatr. 2011 May 27;11:46. doi: 10.1186/1471-2431-11-46.

  PMID: 21619651 BACKGROUND

• NHS England (2019) The NHS Long Term Plan. Retrieved from https://www.longtermplan.nhs.uk/wpcontent/uploads/2019/01/nhs-lo ng-term-plan.pdf

  BACKGROUND

• NICE. (2015). Clinical Guidelines: Coeliac Disease Recognition, assessment and management: Methods, evidence and recommendations (Standard No. NG20). Retrieved from https://www.nice.org.uk/guidance/ng20/evidence/Full guidance-pdf- 438530077

  BACKGROUND

• Olsson C, Lyon P, Hornell A, Ivarsson A, Sydner YM. Food that makes you different: the stigma experienced by adolescents with celiac disease. Qual Health Res. 2009 Jul;19(7):976-84. doi: 10.1177/1049732309338722.

  PMID: 19556403 BACKGROUND

• Rickwood DJ, Deane FP, Wilson CJ. When and how do young people seek professional help for mental health problems? Med J Aust. 2007 Oct 1;187(S7):S35-9. doi: 10.5694/j.1326-5377.2007.tb01334.x.

  PMID: 17908023 BACKGROUND

• Rutter, M., & Smith, D.J. (1995). Psychosocial Disorders in Young People: Time Trends and Their Causes. Chicester: John Wiley & Lons Ltd.

  BACKGROUND

• Schroeder, R. D., & Mowen, T. J. (2014). "You Can't Eat WHAT?" Managing the Stigma of Celiac Disease. Deviant Behavior, 35(6), 456-474. doi: 10.1080/01639625.2014.855105

  BACKGROUND

• Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage.

  BACKGROUND

MeSH Terms

Conditions

Celiac Disease; Social Stigma; Psychological Well-Being

Condition Hierarchy (Ancestors)

Malabsorption Syndromes; Intestinal Diseases; Gastrointestinal Diseases; Digestive System Diseases; Metabolic Diseases; Nutritional and Metabolic Diseases; Social Behavior; Behavior; Personal Satisfaction

Study Officials

• Miranda Wheeler

  University of Oxford

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 20, 2020
• First Posted: January 27, 2020
• Study Start: March 1, 2020
• Primary Completion: October 17, 2020
• Study Completion: October 17, 2020
• Last Updated: October 27, 2020

Record last verified: 2020-03

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)