Master of Science
Health and Rehabilitation Sciences
Brunton, Laura K.
Purpose: The aim of the study was to understand the experiences and impact of pain and fatigue and to further explore the relationship between participants' descriptions of their lived experiences with these phenomena within and across multiple sclerosis, Parkinson's disease, and cerebral palsy. Methods: Semi-structured interviews were used to interview nine participants about their experiences of living with pain and fatigue in their respective conditions. A new phenomenological approach was adopted, and data was analyzed inductively using interpretive phenomenological analysis. Results: Three final themes including a lack of understanding, negative perceptions of pain and fatigue, and coping strategies used to manage these phenomena within and across conditions. Across conditions, pain and fatigue negatively impacted the biopsychosocial aspects of these persons’ lives, reducing their quality of life and overall well-being. Conclusion: Future researchers and clinicians should focus on emphasizing their patients' lived experiences as essential in advancing research and healthcare in this field.
Summary for Lay Audience
Pain and fatigue in multiple sclerosis (MS), Parkinson’s disease (PD), and cerebral palsy (CP) are reported as the most common and disabling symptoms and are often under-emphasized and poorly understood within daily life and healthcare settings. Due to the individual experiences of pain and fatigue in persons living with neurological conditions, these symptoms are described as being personal and complex in nature. Pain and fatigue have been shown to negatively affect functionality, mobility, quality of life (QoL), and the overall well-being of adults with these conditions. The aim of this study was to understand the experiences of pain and fatigue within and across these neurological conditions and explore the similarities and differences between the experiences of these symptoms from the descriptions provided by participants. Nine participants participated in semi-structured interviews centered on the physical, cognitive, emotional, and social aspects that may influence a person’s lived experience with pain and fatigue across conditions. The study found a lack of understanding, negative perceptions of pain and fatigue, and coping strategies used to manage these symptoms across conditions to be the most prevalent topics discussed by participants throughout their interviews. Pain and fatigue were found to negatively impact the physical, cognitive, emotional, and social aspects of persons experiencing pain and fatigue across conditions, further resulting in a poorer QoL and overall well-being. Future research should emphasize using qualitative research methods to further explore and understand the lived experiences of pain and fatigue within and across neurological conditions, and the impact biopsychosocial factors have on this experience. This research may help clinicians and caregivers caring for people with MS, PD, and CP to develop a more informed and personalized approach to improve the current management and intervention plans.
Kane, Lauren L., "The lived experiences of pain and fatigue in persons living with neurological conditions: A phenomenological study" (2022). Electronic Thesis and Dissertation Repository. 8950.