Literature DB >> 32775536

Virtual Parkinson's Disease Support Groups in the COVID-19 Era: Social Connection in the Time of Social Distancing.

Indu Subramanian1,2.   

Abstract

Entities:  

Keywords:  COVID‐19; Parkinson; support group; virtual

Year:  2020        PMID: 32775536      PMCID: PMC7300459          DOI: 10.1002/mdc3.12994

Source DB:  PubMed          Journal:  Mov Disord Clin Pract        ISSN: 2330-1619


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I read with interest the viewpoint and editorial on coronavirus disease 2019 (COVID‐19) published on April 6, 2020. , They point out the risk of social isolation in this vulnerable Parkinson's disease (PD) population, but they do not address a possible solution via virtual support group meetings. Increased mental and emotional stress attributed to the barrage of negative stories in the media, lack of control, and uncertainty of the future can lead to the worsening of both motor and nonmotor issues in PD. , , I describe here a virtual support group intervention for patients with PD (PWP). PD treatment is approached through a combination of pharmacological, surgical, and lifestyle/wellness approaches. The concept of diet and exercise as medicine has increasingly become an integral part of PWP counseling from day 1 of diagnosis. There has been a huge emphasis on early institution of physical therapists, daily exercise, group classes, and support groups. PWP have felt empowered to help their own disease by staying motivated and keeping involved in a number of activities prescribed to them by their health care team. Patients look forward to engaging with their therapists, yoga, and boxing instructors. Many patients feel a sense of purpose and connection through caring for their grandkids or through volunteering. The sudden need to socially distance has literally ripped these therapeutic lifestyle strategies away from our patients overnight. PWP and practitioners alike have been left to scramble to find ways to fill this huge void in their lives. The need for social distancing has put a tremendous strain on caregivers who were already at risk for burning out, getting isolated, and getting sick themselves. Virtual support groups using video‐conference technology serves as model intervention to keep PWP connected, educated, and empowered. The model that we have adopted includes the following: partnering a with a PD advocacy organization that has used zoom technology in the past. Patients have the ability to learn and troubleshoot the zoom technology for 30 minutes before each support group session. The host is a neurologist with expertise in PD who hosts each session 2 times per week. An average group size of 60 to 120 PWP and their caregivers are in attendance. Sessions are archived on YouTube within hours of the group meeting so that patients can rewatch the sessions at their convenience. Sessions are held at noon for the convenience of the speakers and attendees. The host interviews the speakers in the following format: introduction with waving together, speaker gives slides or talks about a topic for 20 to 30 minutes, host interviews the speaker for 10 to 20 minutes, question and answer for 10 minutes, and close with waving together (Table 1).
TABLE 1

Speakers and topics covered

SpeakersWellness topics
NeurologistsResilience
GeriatricianStress management
PsychologistsDealing with uncertainty
PsychiatristsBoosting immunity
Naturopathic docSleep
Integrative medicine docFostering social connection
Physical therapistCaregivers
Occupational therapist
Yoga teacherCOVID‐specific topics
Mindfulness teacherSafety instruction on social distancing
Nurse practitionerHandwashing
Hospice doctorMask wearing
Social workerSafe exercising
ChaplinUse of telehealth
Dietitian
Nonmotor issues
Live demonstrations with audience participationAnxiety
MeditationDepression
YogaApathy
Relaxation breathing instructionInsomnia
Chair exercisesFatigue
Dance and boxingSleep
Bladder
Sex
Cognition
Psychosis
Palliative care: advanced care planning

COVID, coronavirus disease.

Speakers and topics covered COVID, coronavirus disease. The goal of this virtual support group is to prevent the downward spiral of worsened PD symptoms and quality of life for both patients and their caregivers that may be induced by the consequences of COVID‐19 and social distancing. This model of virtual support groups can be emulated anywhere in the world because the speakers themselves are remote. In addition, this model can be replicated for other chronic diseases.

Disclosures

Ethical Compliance Statement: No institutional review board or consent was obtained since there was no study. I confirm that I have read the Journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines. Funding Sources and Conflicts of Interest: No specific funding was received for this work. The author declares there is no conflict of interest relevant to this letter. Financial Disclosures for the Previous 12 Months: There are no financial disclosures for this letter. The author has received honorarium from Acorda and Acadia in the past 12 months.
  5 in total

1.  Stress exacerbates experimental Parkinson's disease.

Authors:  A M Hemmerle; J W Dickerson; J P Herman; K B Seroogy
Journal:  Mol Psychiatry       Date:  2013-09-03       Impact factor: 15.992

Review 2.  The Promise of Telemedicine for Movement Disorders: an Interdisciplinary Approach.

Authors:  H Ben-Pazi; P Browne; P Chan; E Cubo; M Guttman; A Hassan; J Hatcher-Martin; Z Mari; E Moukheiber; N U Okubadejo; A Shalash
Journal:  Curr Neurol Neurosci Rep       Date:  2018-04-13       Impact factor: 5.081

3.  Movement Disorders in the World of COVID-19.

Authors:  A Jon Stoessl; Kailash P Bhatia; Marcello Merello
Journal:  Mov Disord       Date:  2020-04-16       Impact factor: 10.338

4.  Impact of the COVID-19 Pandemic on Parkinson's Disease and Movement Disorders.

Authors:  Stella M Papa; Patrik Brundin; Victor S C Fung; Un Jung Kang; David J Burn; Carlo Colosimo; Han-Lin Chiang; Roy N Alcalay; Claudia Trenkwalder
Journal:  Mov Disord       Date:  2020-04-16       Impact factor: 10.338

5.  The Impact of the COVID-19 Pandemic on Parkinson's Disease: Hidden Sorrows and Emerging Opportunities.

Authors:  Rick C Helmich; Bastiaan R Bloem
Journal:  J Parkinsons Dis       Date:  2020       Impact factor: 5.568

  5 in total
  5 in total

1.  COVID-19 social distancing: negative effects on people with Parkinson disease and their associations with confidence for self-management.

Authors:  Galit Yogev-Seligmann; Michal Kafri
Journal:  BMC Neurol       Date:  2021-07-20       Impact factor: 2.474

2.  Parkinson's patients situation during the SARS CoV-2 pandemic and their interest in telemedicine A cross-sectional study.

Authors:  Victoria Dorothea Witt; Gabriel Baur; Jule Ecke; Anja Kirchner; Björn Hauptmann
Journal:  PLoS One       Date:  2021-12-02       Impact factor: 3.240

3.  Transition and Sustainability of an Online Care Model for People With Parkinson's Disease in Response to the COVID-19 Pandemic.

Authors:  Laura Ketigian; Nicholas Piniella; Kaylie McGivney; Samantha Lui; Austin Dukat; Min-Kyung Jung; Rosemary Gallagher; Adena Leder
Journal:  Front Public Health       Date:  2022-02-02

4.  Dance at Home for People With Parkinson's During COVID-19 and Beyond: Participation, Perceptions, and Prospects.

Authors:  Judith Bek; Michelle Groves; David Leventhal; Ellen Poliakoff
Journal:  Front Neurol       Date:  2021-05-31       Impact factor: 4.003

Review 5.  Moving Forward from the COVID-19 Pandemic: Needed Changes in Movement Disorders Care and Research.

Authors:  B Y Valdovinos; J S Modica; R B Schneider
Journal:  Curr Neurol Neurosci Rep       Date:  2022-02-02       Impact factor: 6.030

  5 in total

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