Women's work at end of life: The intersecting gendered vulnerabilities of patients and caregivers in rural Malawi

ABSTRACT

Gender inequality in the form of gender-based violence manifests throughout the course of women's lives but has a particularly unique impact at end of life. We sampled 26 patients and 14 caregivers for this qualitative critical ethnographic study. The study purpose was to describe the lived experience of female palliative care patients in rural Malawi and their caregivers. The specific aims were to (i) analyse physical, spiritual and mental health needs and (ii) guide best healthcare practice. The study was informed by feminist epistemology, which drew us to an analysis focused on how gender inequality and gender-based violence affect the care of those with terminal illness. In this article, based on our findings, we demonstrate how gender inequality manifests through the intersecting gendered vulnerabilities of patients and their caregivers in rural Malawi. The findings specifically provide insight into the gendered nature of care work and how the gendered life trajectories of both patients and caregivers intersect to impact the health and well-being of both groups. Our findings have implications on how palliative care can be scaled up in rural Malawi in support of women who are experiencing intimate partner violence at end of life, and the caregivers responsible for their well-being.

KEYWORDS:

• Feminist theory
• palliative care
• Malawi
• gender-based violence
• caregiving

Acknowledgments

We are grateful to the women who at the end of their lives, took time to share their experiences with us in the hope that a better understanding of these experiences, might lead to healthier experiences for other women. We are also grateful to the caregivers of the same women who took time away from their caregiving duties, to share about their experiences. Our gratitude goes to K2 Tigwirane Manja AIDS support Organization (K2TASO) for their logistical support with the study and to Ndi Moyo Palliative Care Trust and Hospice Africa Uganda for their helpful insights about improving healthcare for women at end of life in Malawi.

Our gratitude goes to Ms. Holly Hough, Ms. Jillian Jorns and Ms. Emma Martinez who assisted with the final editing and formatting of the manuscript.

The study that forms the basis of this manuscript was made possible through funding from the Center for Global Health Equity and the Sustainable Peacebuilding Program at the College of Nursing, University of Wisconsin-Milwaukee.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 In Malawi, the staple food is maize, which is processed into flour and cooked into a thick paste called nsima. Nsima is eaten along with vegetables or beans, and occasionally, as funds allow, other forms of protein such as eggs or dried fish. The foods that are eaten along with the maize meal are referred to by Malawians as ndiwo in Chichewa or ‘relish’ when translated into English.

2 It is important to note that gendered inequities in household chores are a well-established reality with which female children live throughout Malawi and the Global South. Young female caregivers faced gendered social expectations that they would conduct ‘women's’ household chores (e.g. drawing water) as well as women's caregiving activities (e.g. bathing patients and young children), usually without much support from men.

3 Ndi Moyo is an agency in Salima, Central Malawi that provides home-based end of life care. Ndi Moyo translates from Chichewa to English as ‘The place giving life’.

Additional information

Funding

This work was supported by Sustainable Peacebuilding Program, College of Nursing, University of Wisconsin-Milwaukee; Center for Global Health Equity, University of Wisconsin-Milwaukee, College of Nursing.