Conceptualizing the lived experiences of pain and fatigue in persons living with neurological conditions


Study Title: Conceptualizing the lived experiences of pain and fatigue in persons living with neurological conditions
Rationale: Pain and fatigue have been reported as the most common and disabling non-motor symptoms in adults living with multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), cerebral palsy (CP), and Parkinson’s disease (PD). People with pain and/or fatigue can have impaired functional and cognitive abilities, a reduced quality of life (QoL), and poorer overall well-being. Although the functional changes that occur as a result of the disease and the disease course of MS, ALS, CP, and PD are different, similarities between descriptions of pain and fatigue suggest that there may be benefits to studying these symptoms across conditions. This will be the first study to provide an in-depth understanding of the experiential accounts of pain and fatigue across conditions in adulthood to provide support for the development of a treatment to prevent and manage these symptoms.
Study Description: The primary goal of this study is to develop an understanding of the symptoms of pain and fatigue through the lived experiences of persons living with MS, ALS, CP, and PD. We are looking to explore the accounts of pain and fatigue within and across conditions and determine if the descriptions of these symptoms differ from one another. If you agree to participate in this study, you will partake in one interview using a semi-structured interview guide. The interview will consist of open-ended questions and follow-up prompts being asked on the topics of the biological, psychological, and social factors that may influence your lived experiences with pain and fatigue. You will be provided with a copy of the interview guide via email prior to your scheduled interview to reflect upon the experiences you intend to share or deem most relevant in response to the pre-determined questions and prompts. The interview will last about 1 hour and will be audio-recorded and transcribed. Shortly after your interview, the researcher will provide you with a detailed copy of your data and her analysis to reflect upon and ensure that the researcher’s interpretations are consistent with the experiences you discussed in your interview. The researcher will make changes to the data based on your reflections. All interviews and member reflections will take place via Western University’s Corporate Zoom (for individuals with MS, ALS, and PD) and Webex (for individuals with CP) to protect the privacy and confidentiality of participants. The knowledge gained from this study may help develop an increased understanding of the personal impact these symptoms have in the daily lives and life course of patients. In turn, this may enhance current healthcare practices for managing pain and fatigue and improve functional ability, quality of life, and overall well-being in adulthood. This information may provide guidance on effective management strategies and help create treatment strategies to be used by healthcare providers.
Recruitment Dates: 2022-01-10 to 2022-05-01
Who can participate: Individuals who are 18 years of age or older, of either sex and any gender, able to read, write, and speak in English, have access to an electronic device (computer, phone, tablet, etc.), have a confirmed diagnosis of MS, ALS, CP, or PD and are experiencing pain and/or fatigue.
Location of Trial: Western University
Trial Investigator: Dr. Laura Brunton
Contact Information: Lauren Kane

Dr. Laura Brunton
Trial Funding: NA