Roles, experiences and needs of caregivers of people with Parkinson's disease in South Africa

 

 

Danette de Villiers^I; Susanna Maria van Heerden^II; Mariette Nel^III

^I(M.OT); Lecturer, Department of Occupational Therapy, Faculty of Health Sciences, University of the Free State
^II(M.OT); Senior Lecturer, Department of Occupational Therapy, Faculty of Health Sciences, University of the Free State
^III(MMedSc); Lecturer, Department of Biostatistics, Faculty of Health Sciences, University of the Free State

Correspondence

 

 

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ABSTRACT

Parkinson's disease (PD) is a progressive, debilitating and demanding condition. Caregivers must continually cope with a variety of stressors due to changes resulting from the disease process. The aim of this descriptive study was to investigate the roles, experiences and needs of caregivers of people with PD in South Africa. A convenient sample of 400 people with PD was drawn from the Parkinson's Association of South Africa (PASA) address list. Questionnaires were sent to these people in the hope of identifying caregivers. There were 131 respondents (28.7% response rate). Most caregivers were spouses and the majority was not employed. Sixty percent felt they were adequately informed about PD and 61% felt they received adequate support. Caregivers experienced stress as a result of the disease and the financial burden it placed on the family. The main needs identified by caregivers were emotional support, strategies to ease care giving tasks, time to socialise and free time.

Key words: Needs, Caregivers, Parkinson's disease

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Correspondence:
Danette de Villiers
gnateg.md@ufs.ac.za

Susanna Maria van Heerden
gnatrvh.md@ufs.ac.za

Mariette Nel
gnbsmn.md@ufs.ac.za