Researchers wanted to understand more about the impact of medication management and other quality-of-life issues related to this neurological disease on both patients and caregivers.
A small study out of Taiwan showed the burden of caregiving and medication management on patients and caregivers living with Parkinson disease (PD).
There is no cure for PD, and levodopa and other medications are used to manage symptoms, but patients struggle with motor fluctuation symptoms and other issues returning before the next timed dose can be taken (called OFF periods). In this study, researchers wanted to understand more about the impact of these periods and other quality of life issues on both patients and caregivers.
Fifteen patients and 8 caregivers, all aged 20 to 85 years, were recruited from an outpatient clinic in Taiwan for semistructured, in-depth face-to-face interviews that were transcribed and analyzed by qualitative content analysis to identify relevant themes. Interviews were conducted from September to December 2016.
The interviews were based on a research framework for disease self-management called the Common Sense Model, which, according to the authors, explores “patients’ subjective awareness, emotional actions, and both patients’ and caregivers’ experiences of coping with the disease.” It also looks at coping strategies that may be implemented.
Patients were diagnosed with PD for 2 or more years. Most (73%) were male; over half of the patients were 70 years or older and had a high school education or less.
Five main themes were derived from the conversations.
Symptoms and help-seeking behaviors before a diagnosis. Patients described symptoms that were not immediately recognized as ones related to PD, leading to a delay in diagnosis. These included nightmares, dizziness, tremors, bradykinesia, stiffness, impaired balance, and memory loss. Some of these were attributed to stress or aging.
Emotional impacts and life adaptations after a diagnosis. Patients described feeling depressed, feeling like future plans were shattered, and were embarrassed to be seen in public. They experienced difficulties with work, sports, and other life activities.
Life affected by medications. While patients were grateful for a relief in symptoms, they had to make adjustments in order to be adherent to the medication routines, such as changing their previous eating times. They also had to know when the medication would wear off if they planned an activity.
Experiences of caregivers. Despite feeling depressed, caregivers reported being mindful of having to watch their mood, not only for their sake but also for their family member.
Communication between doctors and patients. Patients tended to have solid relationships with their providers but had many concerns about the future. Finding support in online communities of fellow patients was very helpful, they reported.
The study had some limitations, such as the fact that it was conducted within a single clinic. In addition, all of the patients were on the same type of medications, and so it may not be reflective of patient experiences on other medications. Lastly, level of cognitive impairment, depression, and comorbidities were not included.
“More attention on providing medication information, mental support, and communication between stakeholders is needed to improve the quality of life of patients and caregivers,” concluded the researchers.
Chen YW, Huang CY, Chen JH, et al. Living with Parkinson’s disease: disease and medication experiences of patients and caregivers. Int J Qual Stud Health Well-being. Published online January 2, 2022. doi:10.1080/17482631.2021.2018769