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Malawi: The burden of lymphoedema on care givers

In 2013, CNTD carried out a project in Malawi on the physical, social and economic impact of filarial lymphoedema (Martindale et al, 2014). The study area was the catchment population of Chikwawa District Hospital (population 41,986), a hospital located one of the most endemic areas of the country. A total 69 individuals with lymphoedema were identified: 48 participants were female (70%) and 21 were male (30%). The median age of participants was 60 years, ranging from 22 to 90 years of age and all participants answered a semi-structured questionnaire to assess the impact of lymphoedema across seven predefined areas of their lives. 

CARE GIVER BURDEN

Approximately half of the participants (35/69; 51%) stated that they needed some form of assistance with their self-care as a result of their lymphoedema, mainly when they were experiencing an acute attack – acute inflammation of the skin, lymph vessels and lymph glands; a common clinical manifestation of LF. Of the participants who needed assistance with self-care, 26 stated the gender of the care giver. Of these, 19 (73.1%) were female, 6 (23.1%) were male and 1 person had assistance from both a male and female (3.8%). The majority of these female care givers were a daughter to the patient (47.4%).

Diseases such as lymphatic filariasis have major consequences for mental health not only for patients, but also their caregivers. For children, they may have to make a choice between an education and caring for their relative. For adults, caregiving could be a determining factor in their ability to work and provide for their family. With worldwide estimates suggesting 36.1 million people suffer from the clinical manifestations of LF, it is assumed five million will suffer severely enough to require a care giver, meaning a total of 5 million caregivers worldwide (Ton et al, 2015). However, as little evidence exists on the burden of caregivers, CNTD are planning to include questions related to this in upcoming lymphoedema patient surveys to better understand the caregiver burden and any gender imbalances related to this.