Experiences of young people with neuromuscular diseases
Research type
Research Study
Full title
A study to explore the experiences of young people aged 16 - 21 years with neuromuscular disorders of their journeys from childhood to adulthood.
IRAS ID
116662
Contact name
Laura Gilbert
Contact email
Sponsor organisation
University of Brighton
Research summary
This study aims to explore the experiences of young people with neuromuscular disorders either inherited or acquired (such as Cerebral Palsy) aged 16 – 21 years as they make the transition biologically, socially, emotionally and psychologically from childhood to adulthood. This study is needed as previous research has demonstrated the importance of social relationships and emotional and psychological health for all (House et al 1988) and currently there is a paucity of published research exploring the life experiences of this important and increasing client group.
Data from young people will be collected via a word document that will be developed with boxes for the participants to record their responses which can also be made available as a pdf. This document will be distributed in the best way to suit the participant 1) printed out and hand delivered or posted 2) emailed to the participant 3) hosted on a University of Brighton server and downloaded by the participant using a password.
After completion, the document can be returned in whichever way best suits the participant: 1) posted back to the researcher 2) emailed back to the researcher directly using the University of Brighton email address 3) uploaded to the University server which will be password protected.
Those adults with parental responsibility for the young people,who agree for themselves as the parents / carers to participate in the study, will be interviewed either face to face or via the telephone.
This model of data collection will run without the need to use any third party services which mean that the data is secure.REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
13/LO/1553
Date of REC Opinion
14 Jan 2014
REC opinion
Further Information Favourable Opinion