The burden of knowing: balancing benefits and barriers in HIV testing decisions. a qualitative study from Zambia.

BACKGROUND: Client-initiated HIV counselling and testing has been scaled up in many African countries, in the form of voluntary counselling and testing (VCT). Test rates have remained low, with HIV-related stigma being an important barrier to HIV testing. This study explored HIV testing decisions in one rural and one urban district in Zambia with high HIV prevalence and available antiretroviral treatment. METHODS: Data were collected through 17 in-depth interviews and two focus group discussions with individuals and 10 in-depth interviews with counsellors. Interpretive description methodology was employed to analyse the data. RESULTS: 'To know your status' was found to be a highly charged concept yielding strong barriers against HIV testing. VCT was perceived as a diagnostic device and a gateway to treatment for the severely ill. Known benefits of prevention and early treatment were outweighed by a perceived burden of knowing your HIV status related to stigma and fear. The manner in which the VCT services were organised added to this burden. CONCLUSIONS: This study draws on social stigma theory to enhance the understanding of the continuity of HIV related stigma in the presence of ART, and argues that the burden of knowing an HIV status and the related reluctance to get HIV tested can be understood both as a form of label-avoidance and as strong expressions of the still powerful embodied memories of suffering and death among non-curable AIDS patients over the last decades. Hope lies in the emerging signs of a reduction in HIV related stigma experienced by those who had been tested for HIV. Further research into innovative HIV testing service designs that do not add to the burden of knowing is needed.

Local problems; local solutions: an innovative approach to investigating and addressing causes of maternal deaths in Zambia's Copperbelt.

BACKGROUND: Maternal mortality in developing countries is high and international targets for reduction are unlikely to be met. Zambia's maternal mortality ratio was 591 per 100,000 live births according to survey data (2007) while routinely collected data captured only about 10% of these deaths. In one district in Zambia medical staff reviewed deaths occurring in the labour ward but no related recommendations were documented nor was there evidence of actions taken to avert further deaths. The Investigate Maternal Deaths and Act (IMDA) approach was designed to address these deficiencies and is comprised of four components; identification of maternal deaths; investigation of factors contributing to the deaths; recommendations for action drawn up by multiple stakeholders and monitoring of progress through existing systems. METHODS: A pilot was conducted in one district of Zambia. Maternal deaths occurring over a period of twelve months were identified and investigated. Data was collected through in-depth interviews with family, focus group discussions and hospital records. The information was summarized and presented at eleven data sharing meetings to key decision makers, during which recommendations for action were drawn up. An output indicator to monitor progress was included in the routine performance assessment tool. High impact interventions were identified using frequency analysis. RESULTS: A total of 56 maternal deaths were investigated. Poor communication, existing risk factors, a lack of resources and case management issues were the broad categories under which contributing factors were assigned. Sixty three recommendations were drawn up by key decision-makers of which two thirds were implemented by the end of the pilot period. Potential high impact actions were related to management of AIDS and pregnancy, human resources, referral mechanisms, birth planning at household level and availability of safe blood. CONCLUSION: In resource constrained settings the IMDA approach promotes the use of existing systems to reduce maternal mortality. In turn the capacity of local health officers to use data to determine, plan and implement relevant interventions that address the local factors contributing to maternal deaths is strengthened. Monitoring actions taken against the defined recommendations within the routine performance assessment ensures sustainability. Suggestions for further research are provided.

Conceptual models for mental distress among HIV-infected and uninfected individuals: a contribution to clinical practice and research in primary-health-care centers in Zambia.

BACKGROUND: Mental distress is common in primary care and overrepresented among Human Immunodeficiency virus (HIV)-infected individuals, but access to effective treatment is limited, particularly in developing countries. Explanatory models (EM) are contextualised explanations of illnesses and treatments framed within a given society and are important in understanding an individual's perspective on the illness. Although individual variations are important in determining help-seeking and treatment behaviour patterns, the ability to cope with an illness and quality of life, the role of explanatory models in shaping treatment preferences is undervalued. The aim was to identify explanatory models employed by HIV-infected and uninfected individuals and to compare them with those employed by local health care providers. Furthermore, we aimed to build a theoretical model linking the perception of mental distress to treatment preferences and coping mechanisms. METHODS: Qualitative investigation nested in a cross-sectional validation study of 28 (male and female) attendees at four primary care clinics in Lusaka, Zambia, between December 2008 and May 2009. Consecutive clinic attendees were sampled on random days and conceptual models of mental distress were examined, using semi-structured interviews, in order to develop a taxonomic model in which each category was associated with a unique pattern of symptoms, treatment preferences and coping strategies. RESULTS: Mental distress was expressed primarily as somatic complaints including headaches, perturbed sleep and autonomic symptoms. Economic difficulties and interpersonal relationship problems were the most common causal models among uninfected individuals. Newly diagnosed HIV patients presented with a high degree of hopelessness and did not value seeking help for their symptoms. Patients not receiving anti-retroviral drugs (ARV) questioned their effectiveness and were equivocal about seeking help. Individuals receiving ARV were best adjusted to their status, expressed hope and valued counseling and support groups. Health care providers reported that 40% of mental distress cases were due to HIV infection. CONCLUSIONS: Patient models concerning mental distress are critical to treatment-seeking decisions and coping mechanisms. Mental health interventions should be further researched and prioritized for HIV-infected individuals.

Fairness and legitimacy of decisions during delivery of malaria services and ITN interventions in Zambia.

BACKGROUND: Malaria is the leading cause of morbidity and the second leading cause of mortality in Zambia. Perceptions of fairness and legitimacy of decisions relating to treatment of malaria cases within public health facilities and distribution of ITNs were assessed in a district in Zambia. The study was conducted within the framework of REsponse to ACcountable priority setting for Trust in health systems (REACT), a north-south collaborative action research study, which evaluates the Accountability for Reasonableness (AFR) approach to priority setting in Zambia, Tanzania and Kenya. METHODS: This paper is based on baseline in-depth interviews (IDIs) conducted with 38 decision-makers, who were involved in prioritization of malaria services and ITN distribution at district, facility and community levels in Zambia, one Focus Group Discussion (FGD) with District Health Management Team managers and eight FGDs with outpatients' attendees. Perceptions and attitudes of providers and users and practices of providers were systematized according to the four AFR conditions relevance, publicity, appeals and leadership. RESULTS: Conflicting criteria for judging fairness were used by decision-makers and patients. Decision-makers argued that there was fairness in delivery of malaria treatment and distribution of ITNs based on alleged excessive supply of free malaria medicines, subsidized ITNs, and presence of a qualified health-provider in every facility. Patients argued that there was unfairness due to differences in waiting time, distances to health facilities, erratic supply of ITNs, no responsive appeal mechanisms, inadequate access to malaria medicines, ITNs and health providers, and uncaring providers. Decision-makers only perceived government bodies and donors/NGOs to be legitimate stakeholders to involve during delivery. Patients found government bodies, patients, indigenous healers, chiefs and politicians to be legitimate stakeholders during both planning and delivery. CONCLUSION: Poor status of the AFR conditions of relevance, publicity, appeals and leadership corresponds well to the differing perceptions of fairness and unfairness among outpatient attendees and decision-makers. This may have been re-enforced by existing disagreements between the two groups regarding who the legitimate stakeholders to involve during service delivery were. Conflicts identified in this study could be resolved by promoting application of approaches such as AFR during priority setting in the district.

Accountable priority setting for trust in health systems--the need for research into a new approach for strengthening sustainable health action in developing countries.

Despite multiple efforts to strengthen health systems in low and middle income countries, intended sustainable improvements in health outcomes have not been shown. To date most priority setting initiatives in health systems have mainly focused on technical approaches involving information derived from burden of disease statistics, cost effectiveness analysis, and published clinical trials. However, priority setting involves value-laden choices and these technical approaches do not equip decision-makers to address a broader range of relevant values - such as trust, equity, accountability and fairness - that are of concern to other partners and, not least, the populations concerned. A new focus for priority setting is needed.Accountability for Reasonableness (AFR) is an explicit ethical framework for legitimate and fair priority setting that provides guidance for decision-makers who must identify and consider the full range of relevant values. AFR consists of four conditions: i) relevance to the local setting, decided by agreed criteria; ii) publicizing priority-setting decisions and the reasons behind them; iii) the establishment of revisions/appeal mechanisms for challenging and revising decisions; iv) the provision of leadership to ensure that the first three conditions are met.REACT - "REsponse to ACcountable priority setting for Trust in health systems" is an EU-funded five-year intervention study started in 2006, which is testing the application and effects of the AFR approach in one district each in Kenya, Tanzania and Zambia. The objectives of REACT are to describe and evaluate district-level priority setting, to develop and implement improvement strategies guided by AFR and to measure their effect on quality, equity and trust indicators. Effects are monitored within selected disease and programme interventions and services and within human resources and health systems management. Qualitative and quantitative methods are being applied in an action research framework to examine the potential of AFR to support sustainable improvements to health systems performance.This paper reports on the project design and progress and argues that there is a high need for research into legitimate and fair priority setting to improve the knowledge base for achieving sustainable improvements in health outcomes.

A qualitative study to identify community structures for management of severe malaria: a basis for introducing rectal artesunate in the under five years children in Nakonde District of Zambia.

BACKGROUND: Malaria is a serious illness among children aged 5 years and below in Zambia, which carries with it many adverse effects including anemia and high parasites exposure that lead to infant and childhood mortality. Due to poor accessibility to modern health facilities, malaria is normally managed at home using indigenous and cosmopolitan medicines. In view of problems and implications associated with management of severe malaria at home, rectal artesunate is being proposed as a first aid drug to slow down multiplication of parasites in children before accessing appropriate treatment. METHODS: A qualitative study using standardised in-depth and Focus Group Discussions (FGDs) guides to collect information from four (4) villages in Nakonde district, was conducted between February and March 2004. The guides were administered on 29 key informants living in the community and those whose children were admitted in the health facility. Participants in the 12 FGDs came from the 4 participating villages. Participants and key informants were fathers, younger and older mothers including grandmothers and other influential people at household level. Others were traditional healers, headmen, village secretaries, traditional birth attendants, church leaders and blacksmiths. FGDs and interview transcriptions were coded to identify common themes that were related to recognition, classification and naming of malaria illness, care-seeking behaviour and community treatment practices for severe malaria. RESULTS: Parental prior knowledge of the disease was important as the majority of informants (23 out of 29) and participants (69 out of 97) mentioned four combined symptoms that were used to recognise severe malaria. The symptoms were excessive body hotness, convulsions, vomiting yellow things and bulging of the fontanelle. On the other hand, all informants mentioned two or more of symptoms associated with severe malaria. In all 12 FGDs, participants reported that treatment of severe malaria commenced with the family and moved into the community as the illness progressed. Although treatment of severe diarrheal effects, were common among the Winamwanga, no rectal medicines to treat severe malaria were identified. Apart from the anti-malarial fansidar, which was mentioned by 23 in IDIs and 40 in FGDs, participants and informants also frequently mentioned indigenous medicines provided by healers and other respectable herbalists for repelling evil spirits, once a child had severe malaria. Mothers were the important arms for administration of ant-malarial drugs in the villages. Referrals began with healers to CHWs, where no CHWs existed healers directly referred sick children to the health facility. CONCLUSION: Our findings showed that there is a precedent for rectal application of traditional medicine for childhood illness. Therefore rectal artesunate may be a well-received intervention in Nakonde District, provided effective sensitisation, to mothers and CHWs is given which will strengthen the health care delivery system at community level.

An assessment of factors contributing to treatment adherence and knowledge of TB transmission among patients on TB treatment.

BACKGROUND: The treatment guidelines for tuberculosis treatment under Directly Observed Treatment, Short-course (DOTS) have been a common strategy for TB treatment in Zambia. The study was carried out in Ndola, Zambia, to investigate factors contributing to treatment non-adherence and knowledge of TB transmission among patients on TB treatment, in order to design a community-based intervention, that would promote compliance. METHODS: A household-based survey was conducted in six randomly selected catchment areas of Ndola, where 400 out of 736 patients receiving TB treatment within the six months period, were recruited through the District's Health Management Board (DHMB) clinics. All patients were interviewed using a pre-tested structured questionnaire, consisting of i. Socio-demographic characteristics ii. Socio-economic factors iii. Knowledge about TB transmission and prevention iv. Patterns in health seeking behaviour and v. TB treatment practices at household level. RESULTS: Most male TB patient respondents tended to be older and more educated than the female TB patient respondents. Overall, 29.8% of the patients stopped taking their medication. There were 39.1% of the females and 33.9% of the males, who reported that TB patients stopped taking their medication within the first 2 months of commencing treatment. Age, marital status and educational levels were not significantly associated with compliance. The major factors leading to non-compliance included patients beginning to feel better (45.1% and 38.6%), lack of knowledge on the benefits of completing a course (25.7%), running out of drugs at home (25.4%) and TB drugs too strong (20.1% and 20.2%). There was a significant difference [OR = 1.66, 95% CI 1.23, 2.26] in TB knowledge, with more males than females reporting sharing of cups as a means for TB transmission, after adjusting for age, marital status and educational levels. Significantly [p = 0.016] more patients who had resided in the study for less than two years (59%) were more likely to report mother to child transmission of TB, compared to 41.2% of those who had been in the area for more than 2 years. CONCLUSION: This study established that 29.8% of TB patients failed to comply with TB drug taking regimen once they started feeling better.

Improving ability to identify malaria and correctly use chloroquine in children at household level in Nakonde District, Northern Province of Zambia.

BACKGROUND: This study investigated causes of malaria and how cases were managed at household level, in order to improve the ability to identify malaria and ensure correct use of chloroquine. It was conducted in Nakonde District, Northern Province of Zambia, between 2000 and 2001. Nakonde district is in a hyperendemic malaria province, where Plasmodium falciparum is predominant. The district has a total population of 153, 548 people, the majority of whom are peasant farmers. The main aim of the post intervention survey was to establish the proportion of caretakers of children five years and below, who were able to identify simple and severe malaria and treat it correctly using chloroquine in the home. METHODS: A baseline survey was conducted in five wards divided into intervention and control.Intervention and control wards were compared. Village health motivators and vendors were identified and trained in three intervention wards, as a channel through which information on correct chloroquine dose could be transmitted. A total of 575 carers, who were 15 years old and above and had a child who had suffered from malaria 14 days before the survey commenced, were interviewed. The two control wards received no intervention. 345 caretakers were from the intervention wards, while 230 came from the control wards. Identification of malaria and correct use of anti-malarial drugs was assessed in terms of household diagnosis of malaria in children under five years, type and dose of anti-malarial drugs used, self medication and the source of these anti-malarials. RESULTS: The majority of respondents in the study were females (81%). Chloroquine was the most frequently used anti-malarial (48.5%) in both the intervention and control wards. There was no difference between the intervention and control wards at pre-intervention (P = 0.266 and P = 0.956), in the way mothers and other caretakers identified simple and severe malaria. At baseline, knowledge on correct chloroquine dosage in the under five children was comparable between intervention and control wards. Post-intervention revealed that mothers and other caretakers were 32% and 51%, respectively, more likely to identify simple and severe malaria. There was a 60% increase on correct chloroquine dosage in all age groups among carers living in post-intervention wards. CONCLUSION: Compliance with standard therapeutic doses and correct identification of malaria was poorest in control wards, where no motivators and vendors were trained.