Confidentiality or continuity? Family caregivers\' experiences with care for HIV/AIDS patients in homebased care in Lesotho

In the context of poor access to antiretroviral therapies in sub-Saharan Africa, the minimum treatment package intended to treat opportunistic infections common with HIV infection is inadequate but appealing, since it presumes universal coverage of medical care for patients living with HIV and AIDS. The overall objective of this study was to analyse the challenges which family caregivers encountered in home-based care when they tried to access medical treatment for home-based AIDS patients in the context of confidentiality and limited medical care. A qualitative study using in-depth interviews with a sample of 21 family caregivers –16 females and 5 males aged between 23 and 85 years was conducted with the assistance of health personnel in two hospitals in Lesotho. Using the concept of continuity of care, this article discusses the experiences of family caregivers about home care, including their experiences of adherence to confidentiality by health care professionals and non-disclosure of AIDS as the context of illness, the circumstances under which the caregivers initiated caregiving and sought medical care, and how these factors could be stressors in caregiving. There was continuity of care where the caregivers obtained hospital support. However, when confidentiality was adhered to the caregivers were frustrated by lack of information, disrupted treatment, exclusion of their perspectives in medical care, failure to secure hospitalisation, ambiguous goals and non-responsiveness, so that continuity of care was jeopardised. Thus it can be concluded that professional-assisted disclosure benefited the patients because it facilitated continuity of care through the caregivers. Dans un contexte africain sous-Saharien où l'accès aux thérapies antirétrovirales est très limité, le paquet minimum de traitement destiné au traitement des infections opportunistes liées à la séropositivité est inadéquat mais attirant puisqu'il suppose une couverture universelle de soins médicaux pour des malades vivant avec le VIH/SIDA. L'objectif global de cette communication est d'analyser les défis auxquels les soignants familiaux font face en soins à domicile lorsqu'ils essayent d'avoir accès au traitement médical pour les malades du SIDA dans un contexte de confidentialité et des soins médicaux limités. Une étude qualitative employant des entretiens détaillés auprès d'un échantillon de 21 soignants familiaux (16 femmes et 5 hommes âgés de 23 à 85 ans) a été menée grâce à l'aide du personnel de santé dans deux hôpitaux au Lesotho. En utilisant le concept de continuité de soins, cette communication met en relief des expériences des soignants sur les soins à domicile. Cette communication examine des expériences des soignants familiaux sur les éléments suivants : l'adhésion par les professionnels de santé et de soins à la confidentialité et à la non-divulgation de séropositivité comme étant le contexte de maladie, les circonstances sous lesquelles les soignants ont initié les soins, les soins médicaux suscités, surtout le diagnostic et le traitement, ainsi que l'hospitalisation et la manière dans laquelle ces facteurs pourraient être à l'origine du stresse chez les soignants. On a constaté que la continuité des soins dans le cas où les soignants recevaient du soutien hospitalier – l'information, un traitement gratuit des multiples symptômes et l'hospitalisation de manière prévue et consistante. Cependant, lorsqu'il y avait adhésion à la confidentialité, les soignants étaient frustrés par le manque d'information, un traitement perturbé, l'exclusion de leurs opinions vis-à-vis les soins médicaux, ne pas pouvoir assurer l'hospitalisation des malades et les objectifs ambigües, la non-réceptivité et la continuité a été compromise. En conclusion, on constate que en divulguant sa séropositivité avec l'aide professionnelle a énormément aidé les malades car cela a facilité la continuité de soins assurés par les soignants. Keywords: Lesotho, HIV/AIDS, confidentiality, caregiving, continuity of care, ethic of care. SAHARA J Vol. 5 (1) 2008: pp. 36-4

Food meanings in HIV and AIDS caregiving trajectories: Ritual, optimism and anguish among caregivers in Lesotho

The article describes the caregiving responsibility to provide food for chronically ill family members and the meanings attached to food and eating when ill created stress for family caregivers. The results come from a qualitative phenomenological study using in-depth interviews with 21 family caregivers of chronically ill HIV and AIDS patients in one district in Lesotho. Analysis of the interview data showed that the caregivers attached profound meanings to food and feeding care recipients. Their perceptions about food as part of family life and caring, the role of food and eating in curbing disease progression, the link between food and medical efficacy and the link between food and life led to ritualised behaviour around food, and moments of optimism and anguish in caregiving. Patients’ behaviour in relation to food was in most instances inconsistent with the caregivers’ goals, thus leading this aspect of caregiving to induce stress. Services intended to support home-based caregivers and patients could contribute to the reduction of stress associated with food through suitably tailored food assistance and professional support to caregivers to enhance their competences and understanding of the dynamics of food intake as AIDS progressed

Measuring HIV stigma for PLHAs and nurses over time in five African countries

The aim of this article is to document the levels of HIV stigma reported by persons living with HIV infections and nurses in Lesotho, Malawi, South Africa, Swaziland and Tanzania over a 1-year period. HIV stigma has been shown to negatively affect the quality of life for people living with HIV infection, their adherence to medication, and their access to care. Few studies have documented HIV stigma by association as experienced by nurses or other health care workers who care for people living with HIV infection. This study used standardised scales to measure the level of HIV stigma over time. A repeated measures cohort design was used to follow persons living with HIV infection and nurses involved in their care from five countries over a 1-year period in a three-wave longitudinal design. The average age of people living with HIV/AIDS (PLHAs) (N=948) was 36.15 years (SD=8.69), and 67.1% (N=617) were female. The average age of nurses (N=887) was 38.44 years (SD=9.63), and 88.6% (N=784) were females. Eighty-four per cent of all PLHAs reported one or more HIV-stigma events at baseline. This declined, but was still significant 1 year later, when 64.9% reported experiencing at least one HIV-stigma event. At baseline, 80.3% of the nurses reported experiencing one or more HIV-stigma events and this increased to 83.7% 1 year later. The study documented high levels of HIV stigma as reported by both PLHAs and nurses in all five of these African countries. These results have implications for stigma reduction interventions, particularly focused at health care providers who experience HIV stigma by association

Measuring change in vulnerable adolescents: Findings from a peer education evaluation in South Africa

Introduction: In the context of poverty and HIV and AIDS, peer education is thought to be capable of providing vulnerable youth with psychosocial support as well as information and decision-making skills otherwise limited by scarce social and material resources. As a preventative education intervention method, peer education is a strategy aimed at norms and peer group influences that affect health behaviours and attitudes. However, too few evaluations of peer-led programmes are available,and they frequently fail to reflect real differences between those who have been recipients of peer education and those who have not. This article reports on an evaluation of a pilot peer-led intervention, entitled Vhutshilo, implemented on principles agreed upon through a collaborative effort in South Africa by the Harvard School of Public Health and the Centre for theSupport of Peer Education (the Rutanang collaboration). Vhutshilo targeted vulnerable adolescents aged 14–16 years living in some of South Africa’s under-resourced communities. Methodology: The research design was a mixed-method (qualitative and quantitative), longitudinal, quasi-experimental evaluation. Tools used included a quantitative survey questionnaire (n ¼ 183) and semi-structured interviews (n ¼ 32) with beneficiaries of peer education. Surveys were administered twice forbeneficiaries of peer education (n ¼ 73), immediately after completion of the programme (post-test) and 4 months later (delayed post-test), and once for control group members (n ¼ 110). The three main  methodological limitations in this study were the use of a once-off control group assessment as the baseline for comparison, without a pre-test, due to timing and resource constraints; a small sample size (n ¼ 183), which reduced the statistical power of the evaluation; and the unavailability of existing tested survey questions to measure the impact of peer education and its role in behaviour change. Findings: This article reports on the difficulties of designing a comprehensive evaluation within time and financial constraints, critically evaluates survey design with multi-item indicators, and discusses six statistically significant changes observed in Vhutshilo participants out of a 92-point survey. Youth struggling with poor quality education and living in economically fraught contexts with little social support, nonetheless, showed evidence of having greater knowledge of support networks and an expanded emotional repertoire by the end of the Vhutshilo programme, and 4 months later. At both individual and group level, many with low socio-economic status showed great improvement with regard to programme indicator scores. Conclusion: For the poorest adolescents, especially those living in the rural parts of South Africa, peer education has the potential to change future orientation, attitudes and knowledge regarding HIV and AIDS, including an intolerance for multiple concurrent partnerships. When well organised and properly supported, peer education programmes (and the Vhutshilo curriculum, in particular) provide vulnerable youth with opportunities to develop  psychosocial skills and informational resources that contribute to the changing of norms, attitudes and behaviours. However, the article also flags the need for effective peer education evaluations that take into account limited financial resources and that possess tested indicators of programme effectiveness

Predictors of linkage to care following community-based HIV counseling and testing in rural Kenya

Despite innovations in HIV counseling and testing (HCT), important gaps remain in understanding linkage to care. We followed a cohort diagnosed with HIV through a community-based HCT campaign that trained persons living with HIV/AIDS (PLHA) as navigators. Individual, interpersonal, and institutional predictors of linkage were assessed using survival analysis of self-reported time to enrollment. Of 483 persons consenting to follow-up, 305 (63.2%) enrolled in HIV care within 3 months. Proportions linking to care were similar across sexes, barring a sub-sample of men aged 18–25 years who were highly unlikely to enroll. Men were more likely to enroll if they had disclosed to their spouse, and women if they had disclosed to family. Women who anticipated violence or relationship breakup were less likely to link to care. Enrolment rates were significantly higher among participants receiving a PLHA visit, suggesting that a navigator approach may improve linkage from community-based HCT campaigns.Vestergaard Frandse

The symptom experience of people living with HIV and AIDS in the Eastern Cape, South Africa

<p>Abstract</p> <p>Background</p> <p>Symptom management for persons living with HIV (PLHIV) or AIDS is an important part of care management. Limited information about symptom prevalence exists about HIV infected persons in South Africa, in particular in the context of antiretroviral treatment (ART). The aim of this study was to assess HIV symptoms and demographic, social and disease variables of people living with HIV in South Africa.</p> <p>Methods</p> <p>In 2007 607 PLHIV, sampled by all districts in the Eastern Cape Province and recruited through convenience sampling, were interviewed by PLHIV at health facilities, key informants in the community and support groups.</p> <p>Results</p> <p>Two-thirds of the PLHIV (66%) classified themselves with being given an AIDS (advanced stage of HIV) diagnosis, 48% were currently on ART, 35% were currently on a disability grant for HIV/AIDS and for 13% the disability grant had been stopped. Participants reported that on the day of the interview, they were experiencing an average of 26.1 symptoms out of a possible 64. In a regression model with demographic and social variables, higher HIV symptom levels were associated with lower educational levels, higher age, urban residence and not on a disability grant, lack of enough food and having a health insurance, and in a regression model with demographic, social and disease variables only being on ART, lack of enough food and having a health insurance were associated with HIV symptoms.</p> <p>Conclusion</p> <p>Symptom assessment provides information that may be valuable in evaluating AIDS treatment regimens and defining strategies to improve quality of life. Because of the high levels of symptoms reported, the results imply an urgent need for effective health care, home- and community-based as well as self-care symptom management to help patients and their families manage and control AIDS symptoms.</p

Lack of effective communication between communities and hospitals in Uganda: a qualitative exploration of missing links

<p>Abstract</p> <p>Background</p> <p>Community members are stakeholders in hospitals and have a right to participate in the improvement of quality of services rendered to them. Their views are important because they reflect the perspectives of the general public. This study explored how communities that live around hospitals pass on their views to and receive feedback from the hospitals' management and administration.</p> <p>Methods</p> <p>The study was conducted in eight hospitals and the communities around them. Four of the hospitals were from three districts from eastern Uganda and another four from two districts from western Uganda. Eight key informant interviews (KIIs) were conducted with medical superintendents of the hospitals. A member from each of three hospital management boards was also interviewed. Eight focus group discussions (FGDs) were conducted with health workers from the hospitals. Another eight FGDs (four with men and four with women) were conducted with communities within a five km radius around the hospitals. Four of the FGDs (two with men and two with women) were done in western Uganda and the other four in eastern Uganda. The focus of the KIIs and FGDs was exploring how hospitals communicated with the communities around them. Analysis was by manifest content analysis.</p> <p>Results</p> <p>Whereas health unit management committees were supposed to have community representatives, the representatives never received views from the community nor gave them any feed back from the hospitals. Messages through the mass media like radio were seen to be non specific for action. Views sent through suggestion boxes were seen as individual needs rather than community concerns. Some community members perceived they would be harassed if they complained and had reached a state of resignation preferring instead to endure the problems quietly.</p> <p>Conclusion</p> <p>There is still lack of effective communication between the communities and the hospitals that serve them in Uganda. This deprives the communities of the right to participate in the improvement of the services they receive, to assume their position as stakeholders. Various avenues could be instituted including using associations in communities, rapid appraisal methods and community meetings.</p

Linkage to HIV care, postpartum depression, and HIV-related stigma in newly diagnosed pregnant women living with HIV in Kenya: a longitudinal observational study

BACKGROUND: While studies have suggested that depression and HIV-related stigma may impede access to care, a growing body of literature also suggests that access to HIV care itself may help to decrease internalized HIV-related stigma and symptoms of depression in the general population of persons living with HIV. However, this has not been investigated in postpartum women living with HIV. Furthermore, linkage to care itself may have additional impacts on postpartum depression beyond the effects of antiretroviral therapy. We examined associations between linkage to HIV care, postpartum depression, and internalized stigma in a population with a high risk of depression: newly diagnosed HIV-positive pregnant women. METHODS: In this prospective observational study, data were obtained from 135 HIV-positive women from eight antenatal clinics in the rural Nyanza Province of Kenya at their first antenatal visit (prior to testing HIV-positive for the first time) and subsequently at 6 weeks after giving birth. RESULTS: At 6 weeks postpartum, women who had not linked to HIV care after testing positive at their first antenatal visit had higher levels of depression and internalized stigma, compared to women who had linked to care. Internalized stigma mediated the effect of linkage to care on depression. Furthermore, participants who had both linked to HIV care and initiated antiretroviral therapy reported the lowest levels of depressive symptoms. CONCLUSIONS: These results provide further support for current efforts to ensure that women who are newly diagnosed with HIV during pregnancy become linked to HIV care as early as possible, with important benefits for both physical and mental health