Improving Healthcare for individuals with poorly understood chronic illness
Introduction
Research Area:
Chronic illness/ Service Improvement
What is the research about?
The research is part of a multi-phase PhD project exploring the journeys, needs and experiences of individuals in Ireland who live with poorly understood chronic conditions or “unexplained” symptoms (including ME/CFS, Ehlers-Danlos Syndrome, POTS, FND, Fibromyalgia and others). The aim is to create recommendations for change.
The current opportunity is for 2 individuals with lived experience to be involved in the analysis of patient interviews. No academic background is needed – the contributors will be trained in methods and encouraged to draw on their personal expertise throughout.
Opportunity for:
Involvement Opportunity Details
Time
Time commitment:
3 meetings (up to 1.5 h, online) and 1 methods workshop (online, 2 hours)
Contact between meetings:
Contact by email to arrange meetings, share data , and circulate documents post meetings (1 time per week= 5 instances). The researcher is available for contributor-initiated contact beyond this. Contributors will be conducting interview analysis between meetings.
Length of involvement:
5 weeks of involvement, with opportunity for further engagement in dissemination and manuscript write up
Start date for involvement:
29/04/2024
Logistics
Where?
If online, explain how:
The methods workshop and meetings will occur online via video-conferencing modality preferred by the contributor (e.g. Zoom, Teams). Contact will be by email. Interview transcripts will also be shared by email in a PDF document.
If in person, explain where:
Not applicable
Other ways of communicating:
Mobile / Whatsapp
Funding available for:
If no funding available, explain why:
Not applicable
Other Information
Stage of the research study/ programme:
More than one research study
Is this opportunity for PPI in a PhD:
Yes
Closing date to contact researchers:
22/04/2024
Research Team
Contact person:
Natalia Duda
University/organisation:
Trinity College Dublin
Contact email:
dudan@tcd.ie
Researcher background:
Doctoral researcher (Psychology) and Patient
Research funder:
SFI ADVANCE CRT
Photo:
Interested in this PPI Opportunity?
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