Objective: To present the experiences and coping strategies employed by the caregiver members of PD Support Group Ghana discussed at a meeting.

Background: People with Parkinson’s disease (PD) develop motor and non-motor symptoms which negatively impacts their Quality of Life and usually benefit from support group activities [1]. There are about 365 Parkinson’s UK local support groups run by volunteers with experience of PD and supported by Parkinson’s UK staff working at finding a cure, and improving life for people affected by PD [2]. However, Ghana has only two known PD support groups. The PD Support Group Ghana, one of the two groups, meets monthly to discuss a range of topics on PD and its management, PD research in Ghana, and health of caregivers.

Method: The meeting took the form of a focus group discussion with seven participants; five spouses, a daughter, and a paid caregiver. The 45 minutes session was moderated by a physiotherapist. A set of five semi-structured questions were discussed. The discussion was audio-taped with participants’ permission. The responses were transcribed verbatim for thematic analysis.

Results: All the spouse caregivers agreed that caring for a partner with PD meant a halt to their lives and providing round the clock care for their spouses. One participant expressed this as ‘putting your life on hold’ and ’being one man thousand’, a Ghanaian expression which means ‘jack of all trades’. Also, it was a consensus among the participants that the public has little or no knowledge about the disease, thus, ‘people think it’s part of the ageing process.’ On a scale of zero to 100%, participants reported about 20% to 50% support from the patients themselves, 80% to 100% support from the nuclear family, less than 40% support from the extended family and about 80% support from affiliated associations. Participants agreed that; taking some time off to rejuvenate by participating in social activities; maintaining good communication; keeping faith in God and for the spouses, maintaining intimacy were some avenues explored to cope with the burden of care. Participants resorted to persuasion, rewards and reassurance in resolving their disagreements with the patient.

Conclusion: Caregiver members of the PD support group acknowledge that caring for a person with PD is overwhelming and isolating and should be provided with meaningful support to improve their QoL.

References: 1. Artigas, N.R., Striebel, V.L.W., Hilbig, A. and Rieder, C.R.D.M., 2015. Evaluation of quality of life and psychological aspects of Parkinson’s disease patients who participate in a support group. Dementia & neuropsychologia, 9(3), pp.295-300. 2. https://www.parkinsons.org.uk/information-and-support/local-groups

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MDS Abstracts - https://www.mdsabstracts.org/abstract/caregivers-experiences-and-coping-mechanisms-in-caring-for-persons-with-parkinsons-disease-a-ghanaian-support-group-meeting-report/