Mental Well-being Gains if Patients Can Cope With Public Stigma

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Reports of anxiety and other mental health issues are fewer in people with Parkinson’s who make greater use of a coping mechanism known as self-compassion, a U.K. study based on patients’ views found.

These results further suggest that self-compassion can help to negate the negative affects of “internalized stigma,” or fear of discrimination or labeling due to evident differences. Self-compassion, however, did not help to shield patients from the distress of actually confronting stigma out in the world.

Findings highlight a need for systemic changes to lessen the stigma experienced by Parkinson’s patients as a whole, as well as indicating that interventions to increase self-compassion might be helpful for individuals, according to the researchers.

The study, “Stigma, self-compassion, and psychological distress among people with Parkinson’s,” was published in Disability and Rehabilitation.

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Living with a chronic disease like Parkinson’s can be stressful, and many patients report clinically relevant mental health challenges like anxiety and depression.

These patients can also face stigma. The U.K. research team defined stigma as “a phenomenon whereby individuals are labelled, stereotyped, discredited, and discriminated against, based on certain attributes which are devalued by society, in a context where they have reduced power.”

Unsurprisingly, experiencing such stigma can affect a person’s mental well-being.

Another factor that affects mental health is a person’s tendency toward self-compassion, defined self-as “a non-judgemental acknowledgement of one’s own suffering and a self-directed response based upon ‘kindness, concern and support.'”

The relationship between stigma, self-compassion, and mental health stresses are complex. Understanding more about these relationships could allow for better support of patients.

Scientists, led by those at Lancaster University, conducted a survey of 130 people with Parkinson’s in the U.K. Just over half of the patients were female and nearly all were British and white. The median time since Parkinson’s diagnosis was four years, and over 90% were taking treatments for Parkinson’s.

The survey used validated questionnaires to assess self-compassion, anxiety, depression, stress, and stigma. Two types of stigma were assessed: “enacted” stigma, when other people’s actions or attitudes make a person feel stigmatized, and “internalized” stigma, when a person expects or fears that they will experience enacted stigma.

Researchers then used statistical analyses to look for correlations (associations) among the various scores. Patients reporting higher self-compassion tended to have lower scores for anxiety, depression, and stress, which was expected.

Greater self-compassion also was associated with lower stigma scores, though the association was markedly stronger for internalized than enacted stigma. High stigma scores were generally associated with high depression, stress, and anxiety scores, as was also expected.

Further analyses showed a moderating association between self-compassion, internalized stigma, and anxiety, depression, and stress. Essentially, patients who were more compassionate to themselves were less likely to report psychological distress as a result of internalized stigma.

“People who are higher in self-compassion experience less [internalized] stigma, and therefore, experience lower levels of distress,” the researchers wrote. “If individuals who are higher in self-compassion are less prone to feelings of shame then it follows that they may be less likely to attribute negative Parkinson’s-related stereotypes to themselves, or internalise potentially shaming identities.”

In contrast, no moderating relationship was seen between self-compassion and externalized stigma when it came to its effects on mental health.

“The findings here suggest that enacted stigma increases distress, regardless of levels of self-compassion,” the researchers wrote.

It’s possible that this lack of association was due to a  study’s small sample size, the researchers wrote, or because people with less internalized stigma may under-report the impact of enacted stigma because it bothers them less. Still, study findings “may also point to the importance of the impact of enacted stigma on distress, regardless of levels of self-compassion, in that higher levels of enacted stigma led to higher distress for all groups,” they noted.

“Although approaches aimed at increasing self-compassion at the individual level may be helpful for reducing distress, it is important to also consider how the wider social and relational context contributes to distress for people with Parkinson’s,” the team added.

The scientists stressed that enacted stigma is “clearly a societal problem,” and noted a need for change at all levels — from the actions of individuals, up to governments and other large systems — to make life easier for people with Parkinson’s and other chronic diseases.

Specific changes “might include providing education and training, increasing the visibility of people with Parkinson’s in communities, advocacy programmes, and lobbying for the rights of people with Parkinson’s,” the researchers wrote.

A noted study limitation was the uniform demographics of the patients surveyed. Further research, particularly in more diverse patient groups, is needed.