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People fearful of being stigmatized by a health-related condition often do not embrace prevention behaviors or seek medical help. They may adhere poorly to treatment regimes for disease and abruptly terminate much needed treatment. Globally, 120 million--many poor women--suffer consequences of lymphatic filariasis that include stigmatizing lymphedema or elephantiasis of the leg. We investigated how women with lymphedema from two different cultures experience stigma and its consequences. Our qualitative data were collected from 56 Dominican women and 48 Ghanaian women with lymphedema. A lymphedema-related stigma framework was developed from constructs derived from the literature and emergent themes from the data. Women described a spectrum of enacted, perceived, and internalized stigma experiences, such as being criticized and isolated by the community, health providers, and even by friends and relatives; they were often denied access to education and meaningful work roles. Some antecedents, consequences, coping strategies, and outcomes of these experiences varied across cultures, with Dominican women faring somewhat better than Ghanaians. Poverty, poor access to health care resources, limited education, and diminished social support challenged the coping strategies of many women and exacerbated negative consequences of lymphedema-related stigma.

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OBJECTIVE: This study describes the effectiveness of 'Uma Tori', an STI/HIV-prevention intervention for women of Afro-Surinamese and Dutch Antillean descent in the Netherlands, aimed at increasing awareness of sexual risk and power in relationships and improving sexual decision-making skills. METHODS: Intervention effects were evaluated in a pre-post-test design, using self-report questionnaires among a sample of 273 women. Data were analysed using intention-to-treat, MANOVA with repeated measures and Bonferroni correction for multiple comparisons. Additionally, a qualitative process evaluation, using logbooks and interviews, was conducted to assess fidelity and completeness of intervention implementation. RESULTS: The results showed positive effects on participants' knowledge, risk perceptions, perceived norms and sexual assertiveness. In addition, after the programme, participants had stronger intentions to negotiate and practice safe sex. Furthermore participants communicated more with their partners about safe sex. CONCLUSION: The effects of 'Uma Tori' are promising and the intervention seems to support attempts to reduce sexual-risk behaviour among Afro-Caribbean women. PRACTICE IMPLICATION: The evaluation of the programme suggests that this interactive, multiple session, multi-faceted small-group intervention is successful in increasing participants' awareness, sexual assertiveness, intentions to negotiate safe sex, and communication about sexual behaviour with partners. This programme is applicable in practice, provided that it is gender specific and culturally appropriate.

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Safe sex negotiation and communication about sexual risks with partners is important for women to ensure sexual risk reduction. This paper describes the results of a survey on safer sex and negotiation behavior, and the correlates of negotiation with partners among 128 women from Surinamese and Dutch Antillean descent in the Netherlands. The key findings are that 50% of the participants had negotiated sexual risk reduction with their partner, yet only 40% of the women who negotiated safer sex actually claimed practicing safe sex. Participants defined safe sex with steady partners primarily as negotiated safety and monogamy, and safe sex with casual partners primarily as condom use. Intentions to negotiate safer sex with steady partners were related to positive attitudes and perceived injunctive norms towards safe sex negotiation, and educational background. Intention to discuss safe sex with casual partners were primarily related to attitudes and perceived self-efficacy. STI/HIV prevention interventions targeting these women should incorporate awareness-raising of safety in different types of relationships, deciding on the appropriateness of relation-specific sexual risk reduction strategies, and building negotiation skills to accomplish the realization of these strategies.

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The objective of this study was to describe and understand gender roles and the relational context of sexual decision-making and safe sex negotiation among Afro-Surinamese and Dutch Antillean women in the Netherlands. Twenty-eight individual in-depth interviews and eight focus group discussions were conducted. In negotiating safe sex with a partner, women reported encountering ambiguity between being respectable and being responsible. Their independence, autonomy, authority and pride inherent to the matrifocal household give them ample opportunity to negotiate safe sex and power to stand firm in executing their decisions. The need to be respectable burdens negotiation practices, because as respectable, virtuous women there would not be the need to use condoms. Respectable women will only participate in serious monogamous relationships, which are inherently safe. Women's desire to feel like a woman, 'to tame the macho-man' and constrain him into a steady relationship, limits negotiation space because of emotional dependency. Respectability seems to enforce not questioning men's sexual infidelity. In developing STI/HIV prevention programmes this ambiguity due to cultural values related to gender roles should be considered. Raising awareness of power differences and conflicting roles and values may support women in safe-sex decision-making.

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OBJECTIVE: The objectives of this paper were to identify specific factors associated with intact or disrupted social connectedness among Dominican women with chronic filarial lymphedema and better understand the impact of disrupted connectedness on their lives. METHODS: Data were collected through 28 individual interviews and 3 focus group discussions of 28 women from filariasis-endemic areas of the Dominican Republic presenting with lymphedema of one or both legs. RESULTS: The confluence of chronic and acute stressors with severity of lymphedema lead women to rely on others for social support. Women described complications of aging, disability, reduced social networks, and inability to adhere to cultural scripts as contributing to disrupted social connectedness. CONCLUSION: Social disconnectedness appears to exacerbate the negative consequences of living with lymphedema among women. Social connectedness and cultural scripts often define a social role for women that transcend physical deformity and disability, while disrupted social connectedness contributes to social isolation, depressive symptoms, and poor health outcomes. PRACTICE IMPLICATIONS: Further behavioral research into the contribution of intact social connectedness to resiliency and coping is warranted in order to develop effective interventions for women. Identifying women with disrupted social connectedness and engaging them in behavioral interventions to enhance natural social networks and create new or enhanced social support opportunities may mitigate the negative effects of social disconnectedness and improve quality of life.

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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.

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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.