Social support, followed by satisfaction with life and economic status, are the three factors that most significantly influence how people experience living with Parkinson’s disease, according to a study of patients in five Spanish-speaking countries.
That experience was not influenced by disease-related factors, such as its duration, stage, or the individual’s specific motor symptoms, the study showed, leading researchers to suggest the need for better strategies “to tackle and prevent loneliness” in Parkinson’s patients.
The study, “Influencing factors when Living with Parkinson’s Disease: A cross-sectional study,” was published in the Journal of Clinical Nursing.
Living with Parkinson’s goes beyond just changes in someone’s physical health: it also affects a person psychologically, socially, and spiritually, researchers said. They said healthcare providers, particularly nurses and others who interact the most with patients, need to know what factors can help — or harm — an individual’s ability both to better manage the disease, and to have a more positive outlook on life.
To identify these factors, researchers recruited 324 people with Parkinson’s at seven centers in five countries: Spain, Argentina, Mexico, Ecuador and Cuba. They collected patients’ demographic data, like age and sex, and asked patients to fill out a questionnaire on their social habits, economic status, and satisfaction with life. The researchers also had the patients’ neurologists rate the severity of their disease.
The team then looked for correlations between these factors and the patients’ reported experiences with Parkinson’s. Most in the study were married, retired, and had primary- or secondary-education level; most also had intermediate Parkinson’s symptoms, though all stages were represented.
The most prominent trend was that patients who reported having more social support also tended to describe a more positive life experience. This isn’t especially surprising — other studies have found similar results — though the researchers note theirs is the first study to use validated questionnaires to quantify this relationship.
“[E]stablishing strong and positive personal networks for social support could facilitate positive living with PD [Parkinson’s disease] in terms of illness work, adjustment, emotional support and feelings of burden,” the researchers wrote.
Interestingly, no link was found between the experience of living with Parkinson’s and disease severity. This means that “duration, stage of PD and motor symptoms have a negligible or a weak impact” on the reported day-to-day experience of living with this disease.
“This study highlights the necessity to put more emphasis on the person and his/her daily Living with the condition and less on symptoms and treatment,” the researchers said.
Satisfaction with life had the second most important impact on patients, according to the study, which asked them to rate their degree of satisfaction with their life overall, and in five specific areas: physical, psychological well-being, social relations, leisure, and financial situation.
“These results although logical should not be overlooked as they have clear implications for the unfounded direction of care pathways and priorities for PD management nowadays, which need to include personal based aspects as underpinning elements for quality of care and more essentially satisfaction with life as final patients’ outcomes,” the researchers said.
Surprisingly, the researchers found an unexpectedly weak correlation between economic status and life experiences. In fact, people from higher socioeconomic backgrounds were more likely to be more dissatisfied than others. “This demonstrates that access to material resources does not ensure a better experience of living with a neurodegenerative condition like PD,” the researchers said.
It’s not clear why this association exists. The team speculated that wealthier people might have “higher life expectations and therefore consider living with PD more detrimental.”
Researchers also noted that the study was conducted in a “specific cultural context,” namely Parkinson’s patients in Spanish-speaking countries.
Overall, the study highlighted the need for better social networks for these people.