Living with pain and Parkinson's
Research type
Research Study
Full title
Living with pain and Parkinson’s: developing an understanding of the impact, trajectory, and pain management needs.
IRAS ID
316403
Contact name
Katherine Baker
Contact email
Sponsor organisation
University of Northumbria at Newcastle
Duration of Study in the UK
1 years, 5 months, 1 days
Research summary
Pain in people with Parkinson’s (PwP) is common – reported by up to 85% of PwP, which can have a negative impact on a person’s movement, mood and quality of life. However, pain in PwP is often overlooked by healthcare professionals (half of PwP report receiving no treatment for pain). Furthermore, there are few quality research studies on how best to support PwP to manage their pain. Therefore, there is a pressing need for research to better understand the lived experience of pain from the perspective of PwP, in particular the wider impact that pain has on PwP, whether it changes over time and the relationship between pain and symptoms of Parkinson’s. A better understanding of pain from the perspective of PwP would help to develop better support for PwP to help with reducing the negative impact of pain on their day-to-day lives. Up to 30 PwP from NHS Parkinson's services will be invited to take part in one-to-one interviews (two interviews, up to an hour) over an 18 month time period. The interviews will aim to understand what it is like to live with Parkinson’s and pain, and whether their pain changes over time. Using a structured questionnaire, their views will also be sought on what types of things might prevent (barriers) and encourage (enablers) PwP to accessing pain management interventions. Participants will be recruited from three Parkinson’s NHS services. Interviews can be face-to-face, online or telephone (depending on the preference of the participant). We will aim to recruit a diverse group of PwP (different stages of the condition, age, sex and geographical location). The findings from the interviews will enable us to design a pain management intervention and healthcare professional training that is informed by the lived experience of PwP.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
22/EM/0176
Date of REC Opinion
29 Jul 2022
REC opinion
Further Information Favourable Opinion