Terrific Teens: life with chronic disease - a qualitative study
Research type
Research Study
Full title
Terrific Teens and their parents - qualitative study evaluating how young adults with chronic health conditions and their parents/carers view themselves and their/their child's condition.
IRAS ID
213230
Contact name
Claudia Gore
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
1 years, 4 months, 28 days
Research summary
We seek to evaluate the how young adult patients (age 13-18) with chronic health conditions and their parents/carers view themselves and their/their childs condition and in what ways participation in a digital storytelling process influences this.
Patients with chronic health conditions (multiple allergic conditions or sickle cell disease) and their parents/carers who are participating in a digital storytelling workshop will be invited to participate.
The workshops are being provided independent of the proposed study to give patients/parents/carers a voice, i.e. allow them to tell their story of how the chronic condition affects their life. Eight young adults with multi system allergic disease and their parents will be participating in a parallel 3-day workshop and eight young adults with sickle cell disease and their parents will be participating in a second parallel 3-day workshop.
Workshop participants will be invited to take part in one face-to-face qualitative interview guided by an interview topic guide to learn how their lives are affected by the conditions. As part of the study, they will also complete a validated well-being questionnaire (Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS)) with several additional condition-related questions developed for the study at four time-points. A workshop feedback group session may be audio-recorded if all participants consent to this.
The study seeks to further our understanding how young adult patients with chronic healthcare needs and their parents/cares view themselves and their conditions, how they can be supported and if the digital storytelling process may be a good way of doing so.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
16/ES/0121
Date of REC Opinion
26 Sep 2016
REC opinion
Further Information Favourable Opinion