In this video, Jessica Shurer, MSW, LCSW, Center Coordinator and Clinical Social Worker, Movement Disorder Center, University of North Carolina, Chapel Hill, North Carolina, discusses recent research supporting the role of social workers in neurological care settings as standard practice of comprehensive care for people with Parkinson's disease. Additional research explored the role of social workers in neurological care settings for patients with Parkinson’s disease during the COVID-19 pandemic. These findings were presented at the MDS Virtual Congress 2021.

Read the Transcript:

Jessica Shurer:  Hi, I'm Jessica Shurer, I am the center coordinator and clinical social worker at the Movement Disorder Center at the University of North Carolina, Chapel Hill, which is both of Parkinson's Foundation Center of Excellence and a Cure PSP Center of Care.

I am here to talk to you today about some research that we recently did to better understand the roles of social workers in the care of Parkinson’s disease.

You all know, likely, that the complex, chronic, and progressive nature of Parkinson’s really necessitates an interdisciplinary as well as a palliative approach to care to support the needs of patients and families over the course of living with Parkinson’s disease.

Also at this point, the literature, it continues to provide increasing evidence of how non-motor symptoms including depression, and anxiety, and psychosocial needs of patients and families such as difficult decisions around care over time, anticipatory grief, safety in the home, caregiver needs-- how all of those impact quality of life for people living with Parkinson's in their families.

Social workers are commonly addressing these needs in clinic settings. However, their roles with Parkinson's disease specifically really have not yet been well-documented, especially compared to those of other allied health professionals in the care of Parkinson's.

Our study sought to better understand the breadth of roles of social workers, specifically in the comprehensive and integrated team care of Parkinson's disease. Our study involved an online survey that was sent to movement disorder centers, primarily through the networks of care within the Parkinson's foundation.

We used a mixed methods approach, collecting quantitative data as well as qualitative open-ended responses. We also had a subset of respondents who participated in phone interviews in order to collect additional qualitative data.

In our study, we asked questions around social work roles and interventions at different stages of Parkinson's, as well as risk factors and reasons that prompted social work referrals, interactions with other professionals on the care team, and perspectives on barriers to provision of care.

Given that we ended up performing the study in the middle of the COVID-19 pandemic, which was not originally planned, we also wanted to understand how the delivery of social work services for people with Parkinson's was impacted by COVID-19. We asked questions around that as well.

For the Movement Disorder Society, Virtual Congress 2021, I presented the results from this study across two different posters, one of which was actually named a top abstract of the Congress, which I was so honored by.

Results wise, we ended up having 39 social workers in the United States and Canada, who self-identified as closely working with Parkinson's disease, complete the survey. We would have liked more, a higher sample size. We hope to do further work in this area, but it's definitely hard to.

There were challenges around figuring out how to reach social workers across movement disorder centers or neurology clinics on a wider scale, but it gave us a really good starting place to understand their roles of these 39 social work respondents.

Results from this study echoed the very limited previous research that had been done in this area that social workers play a variety of roles in the care of Parkinson's over disease progression.

We found that for those who are newly diagnosed or in earlier stages, social workers provided connection to community wellness programs such as support groups or exercise classes, as well as a lot of psychoeducation on the disease and talking people through living with a new diagnosis of Parkinson’s.

The more middle stages of Parkinson's, social workers primarily addressed managing loss. Loss around independence, mobility, or social connections. They also provided or referred to mental health services quite frequently as well as help with referrals to allied health professionals such has rehab therapists, again, in the more middle stages of the disease.

We also found that both in the early and middle stages of Parkinson's, social workers were frequently offering strategies specifically to address coping and stress.

In the more advanced stages of Parkinson's, addressing care partner strain was the most common reason for social work involvement. Social workers also frequently played the role of providing education around and connection to respite care and facility care services.

Advanced care planning was one of the most common reasons for social work involvement in both middle and advanced stages of Parkinson's.

Additionally, education on Parkinson's disease itself and connection to educational resources was extremely common, where actually one of the most common social work roles in all three stages of Parkinson's and in fact slightly increased in the later stages which to us really pointed to the importance of continual education on the disease over time rather than just that new diagnosis.

Since COVID-19, we found that about half of the social workers changed their physical work settings to include working remotely and utilizing telehealth services.

However, we found that not only did that not change the frequency of providing direct patient care and their services being utilized but their reported follow-up services with Parkinson's patients and families actually increased by 10 points since COVID-19.

Mental health needs remained the most common reason for social work intervention since COVID-19, although social workers also identified risks of minimal or no family support, lack of connection to community resources, isolation, and loneliness as increased risk factors since COVID-19 warranting social work support, which we found really interesting.

Really showed us how social workers were attending to the needs of these patients and families given these unprecedented times.

The study results also found that social workers worked quite closely with other members of an interdisciplinary team to provide direct patient services, most commonly neurologists, nurses, and rehabilitation therapists.

Additionally, barriers to provision of social work services were identified, including not enough time, staff, or sometimes support to meet the demands of caseloads of these social workers.

Forty three percent of social worker respondents shared that the barriers of care did change since COVID-19, most commonly with challenges around connectiveness and communication within the interdisciplinary care team as well as challenges of reaching and supporting patients who are more isolated in the community.

Overall, to us, the results were indicative of social workers' ability to meet people where they are, identify risk factors, and adjust interventions accordingly.

Ultimately, this study reinforces that social workers play integral roles in addressing non-motor symptoms and psychosocial needs of people with Parkinson's disease and their families from time of diagnosis through end of life, and not that they are well-equipped to meet the challenges of integrated, interdisciplinary Parkinson's care both during the COVID-19 pandemic and beyond.

It is our hope that this study will contribute to the evidence of the need for social workers in neurological care settings as standard practice of comprehensive care for people with Parkinson's disease, their families, as well as other neurodegenerative illnesses.

I have been in my role here at the Movement Disorder Center since 2012, but my news is that, Friday, October 1st is actually my last day here.

I will be transitioning to a national non-profit called Cure PSP. I'll be their director of patient and care partner advocacy. Cure PSP is an organization that specifically serves people with atypical parkinsonism diagnoses, progressive supra-nuclear palsy, cortical basal degeneration, and multiple system atrophy, which can look a little bit like Parkinson's disease, but are rare diseases, they're life limiting, they progress rather quickly. Medications and traditional Parkinson's treatments don't work the same for them. They are very high-needs population. That's where I’ll be after October 4th.

Thank you