Background:

Parkinson’s disease (PD) is a debilitating neurological disease that can result in a reduced quality of life for people with Parkinson’s disease (PwP) and their families. The incidence of PD continues to increase as the global population ages, as is being experienced in Tanzania and much of sub-Saharan Africa, yet healthcare systems are under-developed and not prepared to manage the burden posed by chronic conditions. Little is known about people’s experiences of long-term drug treatment for PD and the impact disease progression has on PwP and their families’ lives. This paper outlines findings from a small-scale qualitative research study on the experiences of PwP in later stages of illness and their families in the Hai district of Tanzania.

Methods:

Semi-structured biographical in-depth interviews were conducted with three PwP and six caregivers in the Hai district of Tanzania. Interviews explored participants’ experiences of living with PD and caring for a family member with PD, their response to biomedical treatment, use of alternative treatment practices and understanding about the disease.

Results:

PWP and caregivers all expressed the emotional, social, physical and economic strain of PD. PwP felt angry and frustrated with their deteriorating condition and increasing dependence but pleased with the treatment. Caregivers described the full-on nature of their caring role which resulted in increasing social isolation, worry and stress as the PwPs’ condition progressed. Religion, faith and prayers played a significant role in disease management in combination with pharmaceutical treatment. Participants did not report any stigmatisation towards PwP from communities.

Conclusion:

This study outlines the emotional, financial and physical challenges that PwP at advanced disease stages and their caregivers experienced in the Hai district. It highlights the need for PD management to acknowledge the role of spiritual healing and social support in combination with biomedical treatment to achieve effective care and improve the wellbeing of PwP and their families, and the need for increased awareness and understanding about PD in the region.