Objective: To provide useful peer and professional support for partners of people with Parkinson’s (PWP)
To be able to offer that support in a Covid safe and convenient way.
Background: In 2020, Hemlich and Bloem (1) discussed the ‘Hidden Sorrows’ of Covid 19, and how the pandemic had been particularly difficult on PWP. Edwards and Carroll (2020) (2), in reply to this article, highlighted the profound effect that the pandemic was also having on care partners, and despite telehealth being an excellent way of assessing PWP, it was often a missed opportunity to check in with the care partner and recognise, evaluate, and support carer strain.
In Plymouth, there had been no formal Parkinson’s carer support group for years. There was a local carer charity however, that did offer advice and support for unpaid care partners.
Method: The author met with the Caring for Carers organisation in early 2021 to seek advice on setting up a specific Parkinson’s carer group. After the author outlined the objectives of the proposed group, it was decided that a co-facilitated approach (Parkinson’s nurse and a representative from Caring for Carers) would work best, pooling the expertise from both parties. Due to the Covid19 restrictions at the time, an online platform was chosen, rather than an in-person meeting.
Next steps:
We advertised the meeting on the Caring for Carers website and in a local newsletter. The 1st meeting went ahead in Aug 2021, with 3 attendees joining. Held monthly meetings from thereon. An online survey was sent out after 8 months to ascertain attendee’s opinions on the group (March 2022).
Results: The survey resulted in 100% of respondents saying that they found the group useful and would recommend to other care partners. 40% said their reasons for attending was to get advice on their caring role. 40% wanted to share their experience of being a care partner, and 20% came along to get advice from the Parkinson’s nurse.
The group continues to grow slowly in numbers.
Conclusion: The care partner group appears to be considered useful by the attendees. This was confirmed by a short online survey, ongoing verbal feedback and repeated attendance.
The group remains online for the time being due to Covid health concerns.
Each new member to the group is offered a formal carer assessment to ensure they are receiving all the support and financial benefits that they may be entitled to.
References: 1) Helmich RC, Bloem BR (2020) The Impact of the Covid 19 pandemic on Parkinson’s disease: Hidden sorrows and emerging opportunities. J Parkinsons Disease 10, 351-354.
2) Edwards E, Camille C (2020) In reply to: Helmich and Bloem (2020) The Impact of the Covid 19 pandemic on Parkinson’s disease: Hidden sorrows and emerging opportunities. J Parkinsons Disease 10 (3) 1267-1268.
To cite this abstract in AMA style:
E. Edwards, S. Austin, J. Friend. ‘Top of the POPPS’ – how we set up an online support group for Partners of People with Parkinson’s. [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/top-of-the-popps-how-we-set-up-an-online-support-group-for-partners-of-people-with-parkinsons/. Accessed June 14, 2025.« Back to 2022 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/top-of-the-popps-how-we-set-up-an-online-support-group-for-partners-of-people-with-parkinsons/