Abstract
Objective: This study examines the gender of home-based caregivers for people affected by lymphatic filariasis (LF) lymphoedema. Methods: In total, 69 LF lymphoedema cases in Malawi were questioned about the assistance they received with a focus on the gender of the caregiver and the type of support provided. Results: Of the 35 cases who required daily assistance, 27 indicated the gender of the caregiver, of which 20 were female (74.1%), and most commonly daughters, sisters or school-aged girls. This care was usually only provided during episodes of painful disabling acute-dermatolymphangioadenitis (ADLA) attacks. The males who provided care were most commonly husbands. Conclusion: The role of female caregivers is ‘unseen’ and this has considerable domestic, educational and economic implications. This gender imbalance also poses barriers to Goal 5 of the Sustainable Development Goals, specifically Target 5.4 that aims to recognize and value unpaid care and domestic work.
Highlights
Lymphatic Filariasis (LF) is a disabling and disfiguring parasitic disease, and one of 17 Neglected Tropical Diseases (NTDs) defined by the World Health Organization (WHO), which affect the poorest and most marginalised communities in the world [1]
27 participants indicated the gender of the caregiver, and of these 20 (74.1%) were female, six (22.2%) were male and one person (3.7%) had assistance from both a male and female (Figure 1A)
All caregivers assisted during an ADLA attack; such care was identified as childcare, general housework, drawing and carrying water, washing and cooking
Summary
Lymphatic Filariasis (LF) is a disabling and disfiguring parasitic disease, and one of 17 Neglected Tropical Diseases (NTDs) defined by the World Health Organization (WHO), which affect the poorest and most marginalised communities in the world [1]. Recent figures estimate that 36 million people suffer from the clinical manifestations of LF, limb lymphoedema (16.68 million) and hydrocele in men (19.43 million), which accounts for at least 2.8 million disability-adjusted life years (DALYs) [1,2] These disabling and disfiguring conditions require specific morbidity management and disability prevention (MMDP) measures, as they inflict a complex range of physical, social, psychological and economic hardships on those affected. These clinical-related hardships are likely to extend beyond the patient to their caregivers at home, there is little information on caregivers, apart from the recent estimates on the burden of depression amongst caregivers of LF patients and an analysis of focus group discussions with LF patients, families, community members and programme volunteers in India [3,4,5]. A further concern is the role of child caregivers, as they may have to make a choice between personal development (such as obtaining an education) and caring for a disabled relative
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