Adolescents experiences of living with inflammatory bowel disease V1.0
Research type
Research Study
Full title
'Adolescents experiences of living with Inflammatory Bowel Disease'
IRAS ID
197434
Contact name
Julie M Summersby
Contact email
Duration of Study in the UK
0 years, 6 months, 14 days
Research summary
The research question being asked is 'the experiences of adolescents' living with inflammatory bowel disease (IBD)' Many professionals believe IBD is the most significant chronic disorder affecting children and adolescents. The aetiology and pathogenesis is unknown however, presentation at a younger age is more extensive and severe than in adults. With the incidence growing worldwide and the bimodal distribution, roughly 25% of cases are diagnosed under the age of 18. Living with IBD, a lifelong condition is unpredictable, with possible distressing symptoms, impacting physical and psychosocial functioning.
This small (N=6-8) phenomenological study explores the lived experiences of teenagers, aged between 13 and 18 years, who have a diagnosis of Inflammatory Bowel Disease (IBD). The cohort will be chosen from a leading Paediatric Gastroenterology Centre in the United Kingdom who were diagnosed with IBD during 2014 and 2015. Generating data from using a variety of data collection tools. A demographic questionnaire and either the Paediatric Crohn’s Disease Activity Index (PCDAI) or the Paediatric Ulcerative Colitis Activity Index (PUCAI completed prior to commencing semi-structured interviews. The interviews will last 45 minutes completed in the individuals own home, with a possible second interview if required. This is qualitative research, a phenomenological study, to explore individuals lived experiences, opinions, perceptions and attitudes on specific matters on peoples lived experiences, to generate rich in-depth descriptive data. The interviews will be transcribed verbatim and analysed adopting Colaizzi’s seven stepped approach in data analysis, to identify themes. The findings will be presented in a thematic discussion. This qualitative study seeks teenagers’ actual lived experiences to provide contextualisation, to advance information surrounding the experiences of living with IBD. Therefore, to understand, it is critical to explore their experiences of living with this chronic condition. Which may inform change when delivering patient care. This study would be hugely beneficial to health professionals to improve patient care and to empower adolescents.REC name
West Midlands - Solihull Research Ethics Committee
REC reference
16/WM/0119
Date of REC Opinion
30 Apr 2016
REC opinion
Further Information Favourable Opinion