Parents of adults with MS: How does their role change over time?
Research type
Research Study
Full title
Parents of adults with MS: What is their role and how does it change over time? A Grounded Theory study.
IRAS ID
218072
Contact name
Camilla Holden
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
0 years, 8 months, 28 days
Research summary
This study aims to address the following research questions: What does the role of a parent to an adult with Multiple Sclerosis (MS) entail and how does it change over time? MS is a chronic and progressive autoimmune inflammatory disease which affects the central nervous system. Both the symptoms of MS and the unpredictability associated with the rate of progression have been shown to have a major psycho-social impact on the individual with MS and their spouse. Although it is recognised that the parents of an adult with MS will also be impacted, potentially through becoming the main carer for their offspring, the experiences of parents have not been specifically addressed in research to date.
In this study participants who have an adult son or daughter who are aged 18 and above and have a diagnosis of MS will be eligible to participate. Clinicians working with families affected by MS will share an advertisement and participant information sheet with parents directly or indirectly through their patients who have MS. The research study will also be advertised through the local MS Society branch where the lead member will circulate an advertisement by email. Parents who are interested in participating can contact the researcher directly to book a telephone screen and a face to face interview. Participants will be asked to speak to a researcher about their experiences of being a parent with a focus on what their parental role entails and how it may have changed. Each interview will last approximately 60 minutes. The data will be analysed in order to develop a theory which aims to conceptualise the role parents may have in a families’ adjustment to chronic illness, what processes underpin this role and how they change over time in order to inform the clinical care of families facing MS.
REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
17/EM/0010
Date of REC Opinion
11 Jan 2017
REC opinion
Further Information Favourable Opinion