Mapping Parkinson’s Disease Needs and Services in Ireland (MapPD)
An ongoing national research study aims to explore the unmet service needs of people with Parkinson’s disease and their perspectives on health service provision across the Republic of Ireland.
Why is this research important?
This research is timely, given that Parkinson’s disease is becoming more common. Despite the rising prevalence, there has not been enough investment made in healthcare services to meet the demand in the population. This situation can have damaging effects on people with Parkinson’s, in terms of their quality of life. It can also lead to more hospital admissions, and excess disability, which might have been avoided if services in the community were better able to provide the right care and support, at the right time.
Who is leading this research?
The project is led by principal investigator Professor Suzanne Timmons, in the Centre for Gerontology and Rehabilitation, University College Cork. Prof. Timmons says “this research will help us understand how we can improve services, to support people with Parkinson’s in Ireland to live healthier and better quality lives”. We are partnered with the Parkinson’s Association of Ireland (PAI) for this project, along with the HSE’s National Clinical Programme for Neurology.
We have very close links with the Cork Parkinson’s Association – in particular, Mr Tony Wilkinson, who is a dedicated member of our project Steering Committee and has been advising and supporting this research from the outset.
How can you get involved?
To collect the information that is needed, we need to hear the real life experiences of people with Parkinson’s and/or their family carers.
There are two ways to get involved in this research:
- You can complete our anonymous National Survey about your experiences of accessing and using health services for your Parkinson’s. It takes approximately 15-20 minutes. The survey can be completed over the phone with a researcher (either Emma, or Aphie), or we can post you a copy of the survey. It can also be completed online at the following link, by either a person with Parkinson’s, or a family member: https://docs.google.com/forms/d/e/1FAIpQLSeZpV-9F_7SX5bS9-KdGdlDJMaikHnvZ2N9HTdc9ebHU9LtLw/viewform?usp=sf_link
- You can do a 20-30-minute telephone interview with a researcher to share your story and experiences with the health system, in a completely confidential manner.
The survey and interviews will provide vital information that we can present to decision-makers in the HSE and Department of Health, to inform service planning and delivery for Parkinson’s care.
The research was made possible through the generous bequest of Mr. Patrick Quinn, co-funded by the Health Research Board.
If you would like further information on this study, or how to get involved, contact the project manager, Dr Emma O’ Shea by email or phone:
Email: emma.oshea@ucc.ie Mobile: 0860354526