Gender norms and stereotypes can affect patients’ well-being, care
Survey and discussion study notes need for better gender-sensitive care
Gender norms and stereotypes substantially can impact the well-being of men and women living with Parkinson’s disease, highlighting a need for more gender-sensitive care, according to a small study into patients’ views.
People with Parkinson’s in the Netherlands indicated that their behaviors and experiences were affected both by masculine stereotypes related to strength and emotional control, and by feminine ones that favor caregiving and appearance.
“To advance gender sensitive [Parkinson’s] care, it’s essential to explore the impact of gender roles and norms, especially regarding how they might impede coping strategies, care access and utilisation for individuals of diverse gender identities,” the researchers wrote.
The study, “Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care,” was published in eClinicalMedicine.
How gender identity and norms affect Parkinson’s patients, care
Social determinants of health encompass a group of nonmedical factors that influence a person’s well-being, including the conditions under which people are born, grow, work, live, and age. These factors also are known to be among key determinants of health outcomes for people living with chronic diseases like Parkinson’s.
Gender, too, is an increasingly recognized factor. Research indicates that both gender identity — a person’s sense of being male, female, nonbinary, or otherwise — and gender-defined social norms — a culture’s beliefs about how people of a given gender identity should behave or socially interact — can affect patients’ life quality.
Adherence to social norms also may contribute to stereotyping in healthcare settings, affecting the care given.
“Understanding how gender norms affect health and illness experiences of people with [Parkinson’s] is essential for the design of programs and policies that combat harmful norms and improve gender equality in health,” the researchers wrote.
Robust studies and long-term data into the issue are lacking, they added. Most such studies rely on surveys that can be “subjected to social desirability bias,” often lack specificity, and are generally conducted in the population at large.
“There is a lack of understanding how gender norms and stereotypes unfold within a healthcare context and particularly, whether and how they influence health and care experiences of men and women” with Parkinson’s, the researchers wrote.
To better understand the role stereotypical gender norms play in patients’ health and care, with the ultimate goal of recommending practices for gender-aware care, the team recruited adults with Parkinson’s through the PRIME-NL Gender Study in the Netherlands.
All participants identified as cisgender, meaning their sex assigned at birth (male, female) matched their gender identity.
A survey initially sent to patients collected information related to gender experiences. A week later, 28 people (13 men and 15 women), with a median age of 64.2 and a median disease duration of 4.9 years, participated in focus discussions conducted in a semi-structured interview format.
Survey results indicated that while most patients were not familiar with the concept of gender-sensitive care, they generally had a positive attitude toward the importance of such sensitivity in care given.
They also generally considered their masculinity or femininity to be a “moderately strong component” of their overall identity. The degree to which these people met their own standard for masculinity or femininity — termed their gender self-confidence — also was moderately strong.
Parkinson’s differing effects by gender on self-image, roles, social relations
In the focus groups, “we found that there are shared and distinct gendered stereotypes and norms that influence illness experiences of men and women with [Parkinson’s],” the researchers wrote.
Most common for both genders was the perception that Parkinson’s patients are “old men,” a stereotype — traced to an 1886 doctor’s sketch of a patient — that can lead to feelings of stigma among patients of varying ages and, particularly, women, the researchers noted.
“I couldn’t identify well with the diagnosis at all, […] I saw an eighty-year-old man who was walking with difficulty. So, I thought, how can I have it?,” said one woman. “When I tell someone for the first time, they say, but you’re not that old yet,” said a man.
Among the men, other impactful stereotypes include those related to being strong, suppressing emotions, and providing for their family. Women mentioned stereotypes associated with expectations of being the family caregiver and, in social encounters, always “looking friendly” or welcoming.
“I was brought up that as a man that you have things taken care of, that the household has adequate resources to run … Then you become dependent on your wife, I have a wonderful wife it’s not about that. But I don’t want to be dependent on her. I say you’re married to me as a guy, but not’s a caregiver. And I find that very annoying,” said a male patient.
“Everyone thinks it’s very normal when a woman takes care of a man with Parkinson’s. But that they find it very special when a man takes care of his wife with Parkinson’s, then suddenly that is a hero,” said a female patient.
Better gender-sensitive care for women would include a greater sense of empowerment in patient-doctor relationships (i.e., feeling listened to) as well as more attention being paid to women’s roles at different life stages, from working outside the home to caregiving. Women also noted a need to better understand how hormonal changes might influence Parkinson’s.
Among men, it would include more attention to factors like emotions and difficulties in expressing them, a changing self-image as husbands and fathers, and a loss of self-confidence.
Both genders emphasized a need for more attention being paid to their emotional well-being.
Based on their findings, the researchers formulated a set of “gender-sensitive” Parkinson’s care and research recommendations.
These “included fostering awareness among researchers and healthcare providers about gender stereotypes to avoid the reproduction of gender biases as well as the encouragement to proactively address social role changes due to the progression of … [disease] symptoms,” the researchers wrote.
Findings also “echo the calls for a broader and more accurate view of Parkinson’s through the use of diverse imaging and inclusive research participation,” they added.
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