Parents' experiences of attending a MDT clinic for children with AMC
Research type
Research Study
Full title
An exploration of parents’ experiences of attending a Multi Disciplinary Team (MDT) clinic in Scotland for children with Arthrogryposis Multiplex Congenita (AMC) - an Interpretative Phenomenological Analysis (IPA).
IRAS ID
201168
Contact name
Elaine Figgins
Contact email
Sponsor organisation
Glasgow Caledonian University
Duration of Study in the UK
1 years, 2 months, 11 days
Research summary
This study will investigate the lived experiences of parents attending the Multi-Disciplinary Team(MDT)led Clinic at the Royal Hospital for Children Glasgow, Scotland for children with Arthrogryposis Multiplex Congenita (AMC). This clinic was set up as a National Scottish service following the first international conference on AMC in 2007. The service currently has no justification or feedback of its benefits or factors requiring improvement for its delivery. Parents will be invited for interview lasting no longer than two hours, at a suitable, agreed convenient location, after they have attended the clinic. The interviews will be transcribed and analysed using an Interpretative Phenomenological Analysis (IPA), which has been shown as appropriate when considering a lived experience in a health care setting. The aim is to determine the parents’ lived experiences and the perceived benefits and challenges of this interaction. This clinic is for children with a congenital condition that is life long, so requires the input and support of parents and carers to ensure the optimum management of each child is undertaken. Parents’ experiences is rich data on the quality of service and required improvements from a user perspective of this clinical service. The study will send out a flyer about the project along with their clinical appointment. They will receive a Participant Information Sheet after the clinic. If they wish to take part they will contact the researcher who will set up a mutually suitable time date and location for the interview. The interviews will be recorded and transcribed by the researcher. A total of between 8-10 parents will be interviewed. The results will be anonymous. This study is part of a professional doctorate thesis, and is planned to be completed within 2 years. No funding for this work has been applied for or is required.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
17/NE/0101
Date of REC Opinion
7 Apr 2017
REC opinion
Favourable Opinion