Genetic counselors can be sources of emotional support in Parkinson’s
New study finds many patients unaware of this part of counselor's role
Providing emotional support is a key part of a genetic counselor’s role — but many people with Parkinson’s disease are not aware of this and don’t expect emotional support from genetic counselors, even if this kind of assistance would be welcome.
That’s according to a new study from the Indiana University School of Medicine, in which participants said they did not expect these counselors to go beyond helping them understanding their testing results.
“This is not some cold clinician that has a second agenda going here. This is a fellow human being,” one patient reflected.
The researchers noted that it’s important for patients to know they can seek out emotional support from genetic counselors, so that individuals undergoing testing can feel comfortable asking for help when they want it.
“If patients are unaware that emotional support is within the scope of practice for genetic counselors, they may not feel comfortable sharing their emotional needs,” the scientists wrote.
The study, “Patient perceptions of genetic counselors’ role and emotional support needs in adults with Parkinson’s disease,” was published in the Journal of Genetic Counseling.
Patients report having ‘no further expectations’ beyond getting test results
Genetic counselors are healthcare professionals who specialize in helping patients make sense of genetic testing results. There are no well-established guidelines for how these experts should provide genetic counseling for people with Parkinson’s. However, some types of Parkinson’s are associated with genetic mutations, and counselors can be an invaluable resource for understanding details like the impact of particular mutations or the risk of passing mutations on to biological children.
But helping patients understand the technical side of genetic tests is only part of the job, according to the researchers. Undergoing genetic testing can be emotionally and mentally taxing, and an important part of a genetic counselor’s role is to provide support to help patients cope with difficult feelings.
In this study, a team of scientists interviewed 15 people with Parkinson’s who were participating in the PD GENEration study — a large initiative by the Parkinson’s Foundation to provide free genetic testing and counseling to Parkinson’s patients. The scientists specifically wanted to better understand patients’ expectations and experiences regarding emotional support from genetic counselors.
In the interviews, almost all of the patients said they had not been expecting genetic counselors to provide emotional support; most patients said they thought counselors were just there to help them understand test results. For example, one patient said, “I just knew she [the counselor] was going over the results” and “had no further expectations for the session.”
In line with these expectations, the patients generally said they had not sought out any kind of emotional support during their genetic counseling sessions. Nonetheless, many of them said their counselor had been a good source of support.
One participant told the researchers “I did not feel [my] emotions discounted ever once” after the discussion with the counselor, in which the patient had shared personal feelings.
It is important that genetic counselors emphasize their role in providing emotional support to patients with [Parkinson’s disease], to improve patient expectations for better empathetic and compassionate care.
Even though expectations about emotional support were low going in, about half of the participants said they felt receiving this kind of support was important for them in their genetic counseling experience. Other patients, especially those who already had therapists or had family members with them, said they didn’t feel it was important in their specific case but noted it could be helpful for others.
“I think it would be important for anyone going through this journey,” one patient said. Another said, “It’s always important […] I just think it’s good when people care.”
Overall, according to the researchers, this study highlights a need for genetic counselors to be proactive about offering emotional support and making it clear that giving this type of support is part of their role.
“It is important that genetic counselors emphasize their role in providing emotional support to patients with [Parkinson’s disease], to improve patient expectations for better empathetic and compassionate care,” the scientists concluded.
The study found that slightly more than a quarter of the participants (27%) reported sharing their feelings with their genetic counselor during their meeting.
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