Experiences of the assessment period for MS version 1
Research type
Research Study
Full title
Exploring the Experiences of People with Multiple Sclerosis During the Assessment Period
IRAS ID
263550
Contact name
John M. Harvey
Contact email
Sponsor organisation
Swansea University
Duration of Study in the UK
1 years, 6 months, 2 days
Research summary
This research proposal seeks to explore the experience of patients with Multiple Sclerosis (MS) during the often extended period of their assessment and diagnosis.
The individual’s journey to a confirmed diagnosis is one that is often lengthy, as the disease mimics other disorders. The assessment period is a critical time for the individual as lengthy waiting times may cause high levels of stress, anxiety, and uncertainty. Although research acknowledges this is a traumatic time for people undergoing assessments for a life-changing condition, it is a period often overlooked in the research literature. Few previous studies have explored the psychological impact individuals face during this time.
To be eligible for this qualitative study, individuals will have been newly diagnosed with MS within the previous three-months. The interviews seek to retrospectively explore the individual’s experiences of the assessment period to obtain a diagnosis. In particular, the interviews will explore:
1. At what point in the journey people experience the most uncertainty and anxiety
2. How they coped with these emotions.Potential participants will be recruited from a 'newly diagnosed day' which is run by ABMU Health Board and funded by the MS Society. The interviews will be conducted face-to-face at the Morriston hospital, although other interview locations such as the individual’s home, or Swansea University can be accommodated based upon the preferences of the participant. The study will recruit for a period of eighteen-months, and participants will be expected to complete a demographics form to gather a range of details like name, gender, and contact details.
The findings from these interviews will help us to better understand at what point in the assessment period people experience the most uncertainty and anxiety. The study has the potential to suggest further work involving interventions to minimise the emotional distress caused at this critical time.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
19/ES/0101
Date of REC Opinion
18 Sep 2019
REC opinion
Further Information Favourable Opinion