Exploring the experience of children and young people with Behcet's

• Research type

  Research Study

• Full title

  Exploring the experience of children and young people who have Behcet's Disease and oral ulcers: a focus on quality of life

• IRAS ID

  318222

• Contact name

  Eman AlQahtani

• Contact email

  e.alqahtani@liverpool.ac.uk

• Sponsor organisation

  Alder Hey Children's NHS Foundation Trust

• Duration of Study in the UK

  0 years, 11 months, 31 days

• Research summary

  Design
  A qualitative interview design has been chosen to help us explore children’s views in a flexible and child friendly way and to provide insight into their perspectives of living with Behcet’s disease.
  These qualitative interviews will be conducted by the post graduate researcher Eman Al Qahtani and/or Elsie Williams, and/or Natalie Carr with children and young people who have been diagnosed with probable/ confirmed BD.
  We have developed a topic guide for all age groups from 8 years old to 18 years old which can be then paraphrased by the interviewer to the children based on their age and understanding.

  Aim
  To better understand the experiences of children and young people (CYP) living with Behcet’s disease.

  Analysis
  Thematic analysis will be conducted using NVivo software. Key themes will be identified surrounding participant experience and their thoughts on how their experience could have been improved. These will be interpreted accordingly, with involvement of experienced topic and qualitative researchers, Elsie Williams and Natalie Carr with support of Dr Louise Roper

  Population eligibility
  Participants will be recruited using convenience sampling from children who attended their appointments at Alder Hey Children’s NHS Foundation Trust Behcet’s clinic or CYP who are contacted via Behcet’s UK charity.

  Duration
  It is estimated to take a year to identify and invite potential participants, to undertake the interviews, and to transcribe the interviews. Analysis will commence following transcription. Recruitment will end when no new themes are identified by the team of researchers.

• REC name

  London - Central Research Ethics Committee

• REC reference

  23/PR/1156

• Date of REC Opinion

  1 Nov 2023

• REC opinion

  Favourable Opinion