The life-world of mothers who care for mentally retarded children: the Katutura township experience

This article reports on a research study done in Katutura Township, near Windhoek. A qualitative, exploratory, descriptive and contextual design was followed to answer the research question investigating experiences of mothers caring for mentally retarded children at home. Phenomenological interviews were conducted with a purposefully selected sample of twelve mothers. The meaning of their experiences was analysed by using Teschxs method (1990 in Creswell, 1994:155) of analysing qualitative data. The results indicated various emotions and challenges experienced by these mothers during the care of their children. Feelings of shock, despondency and sadness dominated the early stages when the retarded children were still young. During later years, as the children were growing up, the mothers felt shame, fear, frustration, anger, disappointment and worry. However, acceptance followed, as the children grew older. Stigma seemed to affect all the respondents. Support in any form or lack thereof seemed to be the decisive factor-positioning mothers along a continuum of two extremes, namely despairing isolation and integrated happiness. Recommendations were made regarding the improvement of heath care services and education of the mothers and their families

Why increasing availability of ART is not enough: a rapid, community-based study on how HIV-related stigma impacts engagement to care in rural South Africa

BACKGROUND: Stigma is a known barrier to HIV testing and care. Because access to antiretroviral therapy reduces overt illness and mortality, some scholars theorized that HIV-related stigma would decrease as treatment availability increased. However, the association between ART accessibility and stigma has not been as straightforward as originally predicted. METHODS: We conducted a “situational analysis”—a rapid, community-based qualitative assessment to inform a combination HIV prevention program in high prevalence communities. In the context of this community-based research, we conducted semi-structured interviews and focus groups with 684 individuals in four low-resource sub-districts in North West Province, South Africa. In addition to using this data to inform programming, we examined the impact of stigma on the uptake of services. RESULTS: Findings suggested that anticipated stigma remains a barrier to care. Although participants reported less enacted stigma, or hostility toward people living with HIV, they also felt that HIV remains synonymous with promiscuity and infidelity. Participants described community members taking steps to avoid being identified as HIV-positive, including avoiding healthcare facilities entirely, using traditional healers, or paying for private doctors. Such behaviors led to delays in testing and accessing care, and problems adhering to medications, especially for men and youth with no other health condition that could plausibly account for their utilization of medical services. CONCLUSIONS: We conclude that providing access to ART alone will not end HIV-related stigma. Instead, individuals will remain hesitant to seek care as long as they fear that doing so will lead to prejudice and discrimination. It is critical to combat this trend by increasing cultural acceptance of being seropositive, integrating HIV care into general primary care and normalizing men and youths’ accessing health care

Informing Comprehensive HIV Prevention: A Situational Analysis of the HIV Prevention and Care Context, North West Province South Africa

Building a successful combination prevention program requires understanding the community's local epidemiological profile, the social community norms that shape vulnerability to HIV and access to care, and the available community resources. We carried out a situational analysis in order to shape a comprehensive HIV prevention program that address local barriers to care at multiple contextual levels in the North West Province of South Africa.The situational analysis was conducted in two sub-districts in 2012 and guided by an adaptation of WHO's Strategic Approach, a predominantly qualitative method, including observation of service delivery points and in-depth interviews and focus groups with local leaders, providers, and community members, in order to recommend context-specific HIV prevention strategies. Analysis began during fieldwork with nightly discussions of findings and continued with coding original textual data from the fieldwork notebooks and a select number of recorded interviews.We conducted over 200 individual and group interviews and gleaned four principal social barriers to HIV prevention and care, including: HIV fatalism, traditional gender norms, HIV-related stigma, and challenges with communication around HIV, all of which fuel the HIV epidemic. At the different levels of response needed to stem the epidemic, we found evidence of national policies and programs that are mitigating the social risk factors but little community-based responses that address social risk factors to HIV.Understanding social and structural barriers to care helped shape our comprehensive HIV prevention program, which address the four 'themes' identified into each component of the program. Activities are underway to engage communities, offer community-based testing in high transmission areas, community stigma reduction, and a positive health, dignity and prevention program for stigma reduction and improve communication skills. The situational analysis process successfully shaped key programmatic decisions and cultivated a deeper collaboration with local stakeholders to support program implementation