Pain in Parkinson's disease: the lived experience

Twomey, Doireann, Stuart, Samuel and Baker, Katherine (2018) Pain in Parkinson's disease: the lived experience. International Journal of Therapy and Rehabilitation, 25 (6). pp. 301-308. ISSN 1741-1645

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Abstract

Introduction:
Pain is common in people with Parkinson’s and reported as one of the most troublesome symptoms. However, pain is under-reported and under prioritised by health-care professionals. Previous research has highlighted the prevalence and presentation of pain, but the experience of living with Parkinson’s and pain is unclear. This study aimed to develop a greater understanding of living with pain and Parkinson’s in order to guide future clinical practice.

Methods:
A qualitative study using interpretative phenomenological analysis was done to capture the personal experience of living with pain in a group of people with Parkinson’s. Four people with Parkinson’s who had experienced pain for at least two months were interviewed in their own home. Ethical approval was granted by the Faculty of Health and Life Sciences ethics committee, Northumbria University.

Results:
Three master themes emerged from the interviews; psychological impact of pain, social impact of pain and disconnect between the professional and patient. It was clear that coping mechanisms differed between the participants and this was related to the amount of negative feeling towards their pain and Parkinson’s more generally. Some of the participants had found strategies to help manage the pain but none of these had been advised by a health professional and indeed a strong theme amongst all participants was the lack of attention to their pain during health care encounters.

Discussion:
The findings show the significant impact pain had on all aspects of the participant’s life and how pain further complicates the ability to manage the motor symptoms of Parkinson’s. The study also highlights the perception of people with Parkinson’s that pain, psychological and social well being were not discussed in interactions with health professionals.

Conclusions:
Awareness needs to be raised of the impact of pain on people with Parkinson’s in order to foster a more holistic approach to supporting them.

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