A qualitative study of the psychosocial and health consequences associated with lymphedema among women in the Dominican Republic

To date, few studies have addressed the sequelae of lymphatic filariasis, a mosquito-transmitted disease, on the quality of life of affected women in the Americas. In this qualitative study, we conducted 28 semi-structured interviews and 3 focus groups of women with lymphedema or elephantiasis of the leg living in filariasis-endemic areas of the Dominican Republic. Women in our study described a spectrum of consequences associated with their lymphedema but physical, functional, and psychological limitations were not always associated with severity of lymphedema. Data suggests that management frameworks need to be expanded to address women's explanatory models of illness, the cultural practices of seeking traditional healers for initial care, psychological distress, coping strategies unique to women, and the practice of self treating with antibiotics without medical supervision. Further research to better understand the depth and breadth of psychological states and coping strategies of women; the health seeking and self-management practices; and the strain on social support networks of women is needed in order to assist health program planners in establishing culturally tailored and gender-specific interventions for Dominican women.