"Can it be that god does not remember me": a qualitative study on the psychological distress, suffering, and coping of Dominican women with chronic filarial lymphedema and elephantiasis of the leg.

The psychological states of Dominican women with chronic lymphedema and elephantiasis of the leg and the coping strategies they used to ameliorate the negative psychological effects of this condition were explored using modified precepts of grounded theory method. Qualitative data were gathered through in-depth interviewing and focus group discussions held in the Dominican Republic. Thematic results found that compounding their physical disfigurement, functional limitations, and social losses were feelings of depression, embarrassment, social isolation, and despair. Adaptive problem solving and emotion-focused coping strategies that emerged during analysis also are discussed. It is recommended that management of psychological distress should be a significant component of lymphedema management programs in developing countries.

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.

Health-seeking behaviors and self-care practices of Dominican women with lymphoedema of the leg: implications for lymphoedema management programs.

BACKGROUND: In the Dominican Republic, a Latin American country with filariasis-endemic areas, more than 63,000 people have lymphatic filariasis and more than 400,000 people are at risk of future infection. In this paper, we explore the health beliefs, health-seeking behaviors and self-care practices of women with lymphoedema in filariasis-endemic areas to better understand the needs of women when developing lymphoedema morbidity control programs. METHODS: Qualitative data were collected through semi-structured interviews of 28 women, 3 focus group discussions with 28 women, field notes and photographs. RESULTS: Women described exhaustive and expensive attempts at seeking a cure for their lymphoedema. Family members were influential in providing women with initial care seeking referrals to indigenous healers credited with influence over physical, mental, spiritual and supernatural properties of illness. When indigenous treatments proved to be ineffectual, the women sought care from trained healthcare providers. Most healthcare providers incorrectly diagnosed the edema, failed to adequately treat and meet the needs of women and were viewed as expensive. Most women resorted to self-prescribing injectable, oral, or topical antibiotics along with oral analgesics as a standard practice of self-care. CONCLUSION: Healthcare providers must understand a woman's cultural perspectives of illness, her natural networks of support and referral, her behavioural practices of care-seeking and self-care and the financial burden of seeking care. In the culture of the Dominican Republic family members and traditional healthcare providers are influential advisors on initial health-seeking behaviors and self-care practices. For this reason family-oriented interventions, support groups for women and their families, community education and training on simple, low cost lymphoedema management techniques for indigenous healers are viable ways to influence the early detection, diagnosis and treatment of women with lymphoedema. The extensive use of injectable, oral and topical antibiotics by indigenous healers and women without medical supervision suggests a need for health education messages related to the risks of such practices.