Articles tagged as "Civil society and community responses / Resilience"

Are the pills going to make you live long Mum? Questions children ask once they learn their mother is living with HIV

Communication about HIV and death: maternal reports of primary school-aged children's questions after maternal HIV disclosure in rural South Africa.

Rochat TJ, Mitchell J, Lubbe AM, Stein A, Tomlinson M, Bland RM. Soc Sci Med. 2017 Jan;172:124-134. doi: 10.1016/j.socscimed.2016.10.031. Epub 2016 Nov 21.

Introduction: Children's understanding of HIV and death in epidemic regions is under-researched. We investigated children's death-related questions post maternal HIV-disclosure. Secondary aims examined characteristics associated with death-related questions and consequences for children's mental health.

Methods: HIV-infected mothers (N = 281) were supported to disclose their HIV status to their children (6-10 years) in an uncontrolled pre-post intervention evaluation. Children's questions post-disclosure were collected by maternal report, 1-2 weeks post-disclosure. 61/281 children asked 88 death-related questions, which were analysed qualitatively. Logistic regression analyses examined characteristics associated with death-related questions. Using the parent-report Child Behaviour Checklist (CBCL), linear regression analysis examined differences in total CBCL problems by group, controlling for baseline.

Results: Children's questions were grouped into three themes: 'threats'; 'implications' and 'clarifications'. Children were most concerned about the threat of death, mother's survival, and prior family deaths. In multivariate analysis variables significantly associated with asking death-related questions included an absence of regular remittance to the mother (AOR 0.25 [CI 0.10, 0.59] p = 0.002), mother reporting the child's initial reaction to disclosure being "frightened" (AOR 6.57 [CI 2.75, 15.70] p≤0.001) and level of disclosure (full/partial) to the child (AOR 2.55 [CI 1.28, 5.06] p = 0.008). Controlling for significant variables and baseline, all children showed improvements on the CBCL post-intervention; with no significant differences on total problems scores post-intervention (β   -0.096 SE1.366  t = -0.07 p = 0.944).

Discussion: The content of questions children asked following disclosure indicate some understanding of HIV and, for almost a third of children, its potential consequence for parental death. Level of maternal disclosure and stability of financial support to the family may facilitate or inhibit discussions about death post-disclosure. Communication about death did not have immediate negative consequences on child behaviour according to maternal report.

Conclusion: In sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience.

Abstract  Full-text [free] access 

Editor’s notes: This is an unusual study examining the experience of the disclosure conversation between mother and child about the mother’s HIV positive status in Kwazulu-Natal. The paper examines the death-associated questions that mothers reported children (aged 6-10 years old, HIV exposed but uninfected) asked up to one week after the ‘disclosure event’. The findings indicate that although the treatability and chronic nature of HIV is complex, children’s questions suggest that they are attempting understand the implications of their mother’s HIV positive status for them, their mother’s and their care. Much research has illustrated that disclosure of both the parents or the child’s own HIV positive status is commonly delayed. This delay may exacerbate the challenges a young person has in adapting to this knowledge. We also know that parents, like a large proportion of people living with HIV, are daunted and feel ill equipped to manage disclosure to others, especially children. However little evidence is currently available evaluating the impact of programmes that are designed to support parents to disclose their own HIV status to their children. Therefore, this programme and study is very welcome.

The focus on death-questions is particularly interesting. This provides some illustration of how children are reportedly processing the information that they have been given. Many questions indicate a prior knowledge of HIV, illness and/ or death. It also suggests that children are managing this new knowledge within this broader context. Within this high HIV-prevalence context, a discursive emphasis on the efficacy of HIV treatment to reduce the risk of HIV-associated mortality within the delivery of timely, age-appropriate education information may be critical.  This can reduce fears around maternal death and supporting children to manage and adapt to their situations. A clear direction for further enquiry would be to follow up these families to assess the impact of full/ partial disclosure over time on the children and the mothers.     

Africa
South Africa
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Creating welcoming spaces for men’s active involvement

What do you need to get male partners of pregnant women tested for HIV in resource limited settings? The baby shower cluster randomized trial.

Ezeanolue EE, Obiefune MC, Yang W, Ezeanolue CO, Pharr J, Osuji A, Ogidi AG, Hunt AT, Patel D, Ogedegbe G, Ehiri JE. AIDS Behav. 2016 Dec 8. [Epub ahead of print]

Male partner involvement has the potential to increase uptake of interventions to prevent mother-to-child transmission of HIV (PMTCT). Finding cultural appropriate strategies to promote male partner involvement in PMTCT programs remains an abiding public health challenge. We assessed whether a congregation-based intervention, the Healthy Beginning Initiative (HBI), would lead to increased uptake of HIV testing among male partners of pregnant women during pregnancy. A cluster-randomized controlled trial of forty churches in Southeastern Nigeria randomly assigned to either the HBI (intervention group; IG) or standard of care referral to a health facility (control group; CG) was conducted. Participants in the IG received education and were offered onsite HIV testing. Overall, 2498 male partners enrolled and participated, a participation rate of 88.9%. Results showed that male partners in the IG were 12 times more likely to have had an HIV test compared to male partners of pregnant women in the CG (CG = 37.71% vs. IG = 84.00%; adjusted odds ratio = 11.9; p < .01). Culturally appropriate and community-based interventions can be effective in increasing HIV testing and counseling among male partners of pregnant women.

Abstract  Full-text [free] access

Editor’s notes: Barriers to male partner participation in antenatal care in sub-Saharan Africa include the timing of antenatal services during work hours and negative health care provider attitudes. Importantly, they also include gender norms against male participation that are anchored in deep-seated perceptions that pregnancy is a woman’s affair. This highly successful trial resulted in verified HIV testing by 84% of male partners in the programme group and 38% in the control group, well above the overall HIV testing uptake by males in Nigeria at the time of 23%. What were the elements of the programme that contributed to its success? Critically, it was conducted in communities where religious institutions and their leaders have strong community influence and where nearly 90% of the population attends places of worship. Next, it proposed integrated testing (haemoglobin, malaria, sickle cell genotype, HIV, hepatitis B, and syphilis) to reduce stigma associated with HIV testing. It included the haemoglobin test because men indicated in the formative stages that they wanted this test to find out how strong they were. Then, it engaged the couples publically, with the religious leader inviting all pregnant women and their partners each Sunday to approach the altar for a prayer, accompanied by information about the baby shower programme and the importance of antenatal care. The programme ran baby showers monthly for all participants with the programme group playing an educational game and being offered free integrated HIV testing. The control group was referred to a local health facility for antenatal care and free HIV testing. At baby receptions held every two to three months, the control groups were offered free integrated HIV testing. All in all, HIV testing for male partners was convenient, free, and integrated with other tests that men wanted. It was provided in a family-centred, congregation-based enabling environment that supported men to step forward with their pregnant partners to learn their HIV status. Such a strategy could work in other settings where influential community leaders are prepared to lead the design and implementation of innovative HIV prevention programmes that resonate with community cultural and spiritual values.

Africa
Nigeria
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Community-based HIV testing for MSM: available at an acceptable cost in Europe

Economic evaluation of HIV testing for men who have sex with men in community-based organizations - results from six European cities.

Perelman J, Rosado R, Amri O, Morel S, Rojas Castro D, Chanos S, Cigan B, Lobnik M, Fuertes R, Pichon F, Slaaen Kaye P, Agusti C, Fernandez-Lopez L, Lorente N, Casabona J. AIDS Care. 2016 Dec 27:1-5. doi: 10.1080/09540121.2016.1271392. [Epub ahead of print]

The non-decreasing incidence of HIV among men who have sex with men (MSM) has motivated the emergence of Community Based Voluntary Counselling and Testing (CBVCT) services specifically addressed to MSM. The CBVCT services are characterized by facilitated access and linkage to care, a staff largely constituted by voluntary peers, and private not-for-profit structures outside the formal health system institutions. Encouraging results have been measured about their effectiveness, but these favourable results may have been obtained at high costs, questioning the opportunity to expand the experience. We performed an economic evaluation of HIV testing for MSM at CBVCT services, and compared them across six European cities. We collected retrospective data for six CBVCT services from six cities (Copenhagen, Paris, Lyon, Athens, Lisbon, and Ljubljana), for the year 2014, on the number of HIV tests and HIV reactive tests, and on all expenditures to perform the testing activities. The total costs of CBVCTs varied from 54 390€ per year (Ljubljana) to 245 803€ per year (Athens). The cost per HIV test varied from to 41€ (Athens) to 113€ (Ljubljana). The cost per HIV reactive test varied from 1966€ (Athens) to 9065€ (Ljubljana). Our results show that the benefits of CBVCT services are obtained at an acceptable cost, in comparison with the literature (values, mostly from the USA, range from 1600$ to 16 985$ per HIV reactive test in clinical and non-clinical settings). This result was transversal to several European cities, highlighting that there is a common CBVCT model, the cost of which is comparable regardless of the epidemiological context and prices. The CBVCT services represent an effective and "worth it" experience, to be continued and expanded in future public health strategies towards HIV.

Abstract access

Editor’s notes: Although HIV incidence among some key populations in Europe has declined in recent years, new cases among gay men and other men who have sex with men have steadily increased over the last decade. Among those new cases, over a third are reported late, leading to worse health outcomes for the person, as well as an increased risk of onward transmission. As a result, community-based voluntary counselling and testing has been rolled out in European cities to encouraging results in terms of effectiveness.

In that context, the authors of this paper have carried out an economic evaluation of community-based voluntary counselling and testing programmes in six cities across Europe (Athens, Copenhagen, Lisbon, Lyon, Paris and Ljubljana). They collected total annual costs of running the programmes. They found that the cost per HIV test ranged from €41 in Athens to €113 in Ljubljana and the cost per reactive HIV test ranged from €1966 to €9065 in the same two cities. The authors found that these costs are acceptable compared to those found in the literature.

Oddly, one of the more interesting results found in the article, but not discussed within the text, is the cost per reactive HIV test link to care. This varied in absolute terms (€2297- €20 215) likely due to different linkages to care rates, from 100% in Copenhagen to under 40% in Paris. Given the ultimate aims of testing (which ought to be to improve health outcomes and reduce onward transmission) this is a more important figure than the cost per test. Further research therefore should explore the unit costs further down the treatment cascade resulting from these programmes. These would be, for example, cost per person on treatment and cost per person with a suppressed viral load. 

Europe
Denmark, France, Greece, Portugal, Slovenia
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HIV incidence halved among injecting drugs users in network outreach programme - Ukraine

HIV incidence among people who inject drugs (PWIDs) in Ukraine: results from a clustered randomised trial.

Booth RE, Davis JM, Dvoryak S, Brewster JT, Lisovska O, Strathdee SA, Latkin CA. Lancet HIV. 2016 Oct;3(10):e482-9. doi: 10.1016/S2352-3018(16)30040-6. Epub 2016 Jul 29.

Background: HIV prevalence among people who inject drugs (PWID) in Ukraine is among the highest in the world. In this study, we aimed to assess whether a social network intervention was superior to HIV testing and counselling in affecting HIV incidence among PWID. Although this was not the primary aim of the study, it is associated with reducing drug and sex risk behaviours, which were primary aims.

Methods: In this clustered randomised trial, PWID who were 16 years of age or older, had used self-reported drug injection in the past 30 days, were willing to be interviewed for about 1 hour and tested for HIV, were not too impaired to comprehend and provide informed consent, and, for this paper, who tested HIV negative at baseline were recruited from the streets by project outreach workers in three cities in southern and eastern Ukraine: Odessa, Donetsk, and Nikolayev. Index or peer leaders, along with two of their network members, were randomly assigned (1:1) by the study statistician to the testing and counselling block (control group) or the testing and counselling plus a social network intervention block (intervention group). No stratification or minimisation was done. Participants in the network intervention received five sessions to train their network members in risk reduction. Those participants assigned to the control group received no further intervention after counselling. The main outcome of this study was HIV seroconversion in the intent-to-treat population as estimated with Cox regression and incorporating a gamma frailty term to account for clustering. This trial is registered with ClinicalTrial.gov, number NCT01159704.

Findings: Between July 12, 2010, and Nov 23, 2012, 2304 PWIDs were recruited, 1200 of whom were HIV negative and are included in the present study. 589 index or peer leaders were randomly assigned to the control group and 611 were assigned to the intervention group. Of the 1200 HIV-negative participants, 1085 (90%) were retained at 12 months. In 553.0 person-years in the intervention group, 102 participants had seroconversion (incidence density 18.45 per 100 person-years; 95% CI 14.87-22.03); in 497.1 person-years in the control group 158 participants seroconverted (31.78 per 100 person-years; 26.83-36.74). This corresponded to a reduced hazard in the intervention group (hazard ratio 0.53, 95% CI 0.38-0.76, p=0.0003). No study-related adverse events were reported.

Interpretation: These data provide strong support for integrating peer education into comprehensive HIV prevention programmes for PWID and suggest the value in developing and testing peer-led interventions to improve access and adherence to pre-exposure prophylaxis and antiretroviral therapy.

Abstract  Full-text [free] access 

Editor’s notes: People who inject drugs are at high risk of HIV infection, and, in many settings, are unlikely to have appropriate access to HIV prevention programmes. This study is a secondary, subgroup analysis of a randomised control of a social network programme for people who inject drugs in Ukraine (the primary outcome was HIV risk taking behaviour). The investigators recruited 256 index users, who subsequently recruited fellow members of their injection network to the study. Half (n=128) of the index participants were randomized to a two-week training programme in risk reduction education. These “peer leaders” were trained with the intention that they would disseminate these skills within their injection networks. The HIV incidence was alarmingly high. After 12 months, for the sub-group of participants who were initially HIV-negative, the incidence of seroconversion was 31.9/100 person-years in the control networks and 18.4/100 person-years in the programme networks, representing a 47% reduction in incidence associated with the programme. This study is notable for its randomized design, low attrition, close collaboration with local non-governmental organizations, a study protocol adaptation process which engaged drugs users and dealers, and a biological outcome measure. Further research can consider the economic costs for each averted HIV infection, whether the programme effects varied by other factors, and assessment of the extent to which the risk reduction skills were shared beyond study participants. The very high incidence, even among those receiving the intervention, emphasize the need for much greater investment in harm reduction approaches.

Europe
Ukraine
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Access improved to HIV testing through peer administered oral fluid HIV tests in key populations in Brazil

Point-of-care HIV tests done by peers, Brazil.

Pascom AR, Dutra de Barros CH, Lobo TD, Pasini EN, Comparini RA, Caldas de Mesquita F. Bull World Health Organ. 2016 Aug 1; 94(8): 626–630.

Problem: Early diagnosis of infections with human immunodeficiency virus (HIV) is needed - especially among key populations such as sex workers, transgender people, men who have sex with men and people who use drugs.

Approach: The Brazilian Ministry of Health developed a strategy called Viva Melhor Sabendo ("live better knowing") to increase HIV testing among key populations. In partnership with nongovernmental organizations (NGOs), a peer point-of-care testing intervention, using an oral fluid rapid test, was introduced at social venues for key populations at different times of the day.

Local setting: Key populations in Brazil can have 40 times higher HIV prevalence than the general population (14.8% versus 0.4%).

Relevant changes: Legislation was reinterpreted, so that oral fluid rapid tests could be administered by any person trained in rapid testing by the health ministry. Between January 2014 and March 2015, 29 723 oral fluid tests were administered; 791 (2.7%) were positive. Among the key populations, transgender people had the greatest proportion of positive results (10.7%; 172/1612), followed by men who declared themselves as commercial sex workers (8.7%; 165/1889) and men who have sex with men (4.8%; 292/6055).

Lessons learnt: The strategy improved access to HIV testing. Testing done by peers at times and locations suitable for key populations increased acceptance of testing. Working with relevant NGOs is a useful approach when reaching out to these key populations.

Abstract  Full-text [free] access 

Editor’s notes: Brazil was a pioneer in provision of universal access to ART, adopting universal treatment for all people living with HIV in 2013. The HIV epidemic in Brazil is largely concentrated in key populations, where early treatment is less likely to be initiated than in the general population. In this report, the authors describe the results of a new strategy to allow trained peers from 53 non-governmental organisations (NGOs) to conduct rapid HIV screening tests using oral fluid tests, and refer clients with positive results for treatment. Key features were the full ownership of the testing implementation by the NGOs, extension of testing to social venues, and the matching of testers and clients by demographic characteristics. About half of the clients (53%) were first-time testers, providing clear evidence of the success of this new strategy. Future work should describe how individual NGOs revised their strategy over time, which NGOs were more successful in reaching key populations, and which NGOs were more successful in referring clients with positive results for test confirmation and treatment.

Latin America
Brazil
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Changing norms: lessons from HIV advocacy for NCDs prevention

Ability of HIV advocacy to modify behavioral norms and treatment impact: a systematic review.

Sunguya BF, Munisamy M, Pongpanich S, Yasuoka J, Jimba M. Am J Public Health. 2016 Aug;106(8):e1-e8. Epub 2016 Jun 16.

Background: HIV advocacy programs are partly responsible for the global community's success in reducing the burden of HIV. The rising wave of the global burden of noncommunicable diseases (NCDs) has prompted the World Health Organization to espouse NCD advocacy efforts as a possible preventive strategy. HIV and NCDs share some similarities in their chronicity and risky behaviors, which are their associated etiology. Therefore, pooled evidence on the effectiveness of HIV advocacy programs and ideas shared could be replicated and applied during the conceptualization of NCD advocacy programs. Such evidence, however, has not been systematically reviewed to address the effectiveness of HIV advocacy programs, particularly programs that aimed at changing public behaviors deemed as risk factors.

Objectives: To determine the effectiveness of HIV advocacy programs and draw lessons from those that are effective to strengthen future noncommunicable disease advocacy programs.

Search methods: We searched for evidence regarding the effectiveness of HIV advocacy programs in medical databases: PubMed, The Cumulative Index to Nursing and Allied Health Literature Plus, Educational Resources and Information Center, and Web of Science, with articles dated from 1994 to 2014.

Search criteria. The review protocol was registered before this review. The inclusion criteria were studies on advocacy programs or interventions. We selected studies with the following designs: randomized controlled design studies, pre-post intervention studies, cohorts and other longitudinal studies, quasi-experimental design studies, and cross-sectional studies that reported changes in outcome variables of interest following advocacy programs. We constructed Boolean search terms and used them in PubMed as well as other databases, in line with a population, intervention, comparator, and outcome question. The flow of evidence search and reporting followed the standard Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines.

Data collection and analysis: We selected 2 outcome variables (i.e., changing social norms and a change in impact) out of 6 key outcomes of advocacy interventions. We assessed the risk of bias for all selected studies by using the Cochrane risk-of-bias tool for randomized studies and using the Risk of Bias for Nonrandomized Observational Studies for observational studies. We did not grade the collective quality of evidence because of differences between the studies, with regard to methods, study designs, and context. Moreover, we could not carry out meta-analyses because of heterogeneity and the diverse study designs; thus, we used a narrative synthesis to report the findings.

Main results: A total of 25 studies were eligible, of the 1463 studies retrieved from selected databases. Twenty-two of the studies indicated a shift in social norms as a result of HIV advocacy programs, and 3 indicated a change in impact. We drew 6 lessons from these programs that may be useful for noncommunicable disease advocacy: (1) involving at-risk populations in advocacy programs, (2) working with laypersons and community members, (3) working with peer advocates and activists, (4) targeting specific age groups and asking support from celebrities, (5) targeting several, but specific, risk factors, and (6) using an evidence-based approach through formative research.

Author conclusions: HIV advocacy programs have been effective in shifting social norms and facilitating a change in impact.

Public health implications: The lessons learned from these effective programs could be used to improve the design and implementation of future noncommunicable disease advocacy programs.

Abstract access

Editor’s notes: This article presents the results of a systematic review to answer a question about the effectiveness of HIV advocacy in changing social norms and changing impact among key populations. The review was conducted to learn from effective HIV advocacy and apply similar strategies for the prevention and reduction of the global burden of non-communicable diseases. The review included quantitative research only. After searching 3320 articles, 25 articles met the inclusion criteria. The HIV advocacy activities reviewed ranged from local and mass campaigns using a variety of media, to social marketing, celebrities, drama, promotional activities and counselling. Changes in social norms were assessed using six specific variables, for example testing behaviour change or HIV-associated stigma. Changes in impact were analysed in two aspects, changes in HIV transmission and in adherence to antiretroviral therapy. The review has found significant evidence of the effect of HIV advocacy on the outcomes of interest. The authors highlight lessons from HIV advocacy that might be useful for future non-communicable diseases advocacy. These included the vital role of peer-educator and of lay members of the community and the involvement of key populations in programmes that focus on them.  In addition, there is a need to tailor programmes to specific (rather than multiple) risks using local and salient evidence. 

Africa, Northern America, Oceania
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HIV testing in South Africa: on track to reach the first “90”?

Changes in self-reported HIV testing during South Africa's 2010/2011 national testing campaign: gains and shortfalls.

Maughan-Brown B, Lloyd N, Bor J, Venkataramani AS. J Int AIDS Soc. 2016; 19(1): 20658.

Objectives: HIV counselling and testing is critical to HIV prevention and treatment efforts. Mass campaigns may be an effective strategy to increase HIV testing in countries with generalized HIV epidemics. We assessed the self-reported uptake of HIV testing among individuals who had never previously tested for HIV, particularly those in high-risk populations, during the period of a national, multisector testing campaign in South Africa (April 2010 and June 2011).

Design: This study was a prospective cohort study.

Methods: We analyzed data from two waves (2010/2011, n=16 893; 2012, n=18 707) of the National Income Dynamics Study, a nationally representative cohort that enabled prospective identification of first-time testers. We quantified the number of adults (15 years and older) testing for the first time nationally. To assess whether the campaign reached previously underserved populations, we examined changes in HIV testing coverage by age, gender, race and province sub-groups. We also estimated multivariable logistic regression models to identify socio-economic and demographic predictors of first-time testing.

Results: Overall, the proportion of adults ever tested for HIV increased from 43.7% (95% confidence interval (CI): 41.48, 45.96) to 65.2% (95% CI: 63.28, 67.10) over the study period, with approximately 7.6 million (95% CI: 6,387,910; 8,782,986) first-time testers. Among black South Africans, the country's highest HIV prevalence sub-group, HIV testing coverage improved among poorer and healthier individuals, thus reducing gradients in testing by wealth and health. In contrast, HIV testing coverage remained lower for men, younger individuals and the less educated, indicating persistent if not widening disparities by gender, age and education. Large geographic disparities in coverage also remained as of 2012.

Conclusions: Mass provision of HIV testing services can be effective in increasing population coverage of HIV testing. The geographic and socio-economic disparities in programme impacts can help guide best practices for future efforts. These efforts should focus on hard-to-reach populations, including men and less-educated individuals.

Abstract Full-text [free] access

Editor’s notes: In South Africa, around one in eight people are living with HIV yet around half of these people do not know that they are HIV positive. To meet the 90-90-90 treatment target by 2020, there needs to be considerable expansion of HIV testing coverage. This analysis used independent nationally representative data on self-reported HIV testing to demonstrate that coverage of HIV testing increased substantially following the national multi-sector HIV testing campaign in 2010/11. Despite the expansion in coverage, in the 2012 survey one in three people aged >15 years reported never having received an HIV test. There was marked gender disparity, some 72% of women versus 57% men reported ever having tested in the 2012 survey. There were also prominent gaps among certain socio-economic groups, suggesting persistent inequities in access to HIV testing. 

Although South Africa performs around 10 million HIV tests per year, the number of people tested falls substantially below the target of 30 million tests set for 2016 in the National Strategic Plan. In September, South Africa will implement the “test and treat” approach where all people living with HIV will be offered antiretroviral therapy. In addition, demonstration projects are underway of pre-exposure prophylaxis (PrEP) for HIV prevention. HIV testing services  is the gateway to all treatment and prevention services. The national campaign for HIV testing will clearly need to be revitalised in order to maximise the impact of these public health activities. At the same time, the data reported here would suggest that more innovative and focused approaches may be necessary for difficult to reach population groups.

Africa
South Africa
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An innovative method to evaluate community support for children: Using existing datasets

How effective is help on the doorstep? A longitudinal evaluation of community-based organisation support. 

Sherr L, Yakubovich AR, Skeen S, Cluver LD, Hensels IS, Macedo A, Tomlinson M. PLoS One. 2016 Mar 11;11(3):e0151305. doi: 10.1371/journal.pone.0151305. eCollection 2016.

Community-based responses have a lengthy history. The ravages of HIV on family functioning has included a widespread community response. Although much funding has been invested in front line community-based organisations (CBO), there was no equal investment in evaluations. This study was set up to compare children aged 9-13 years old, randomly sampled from two South African provinces, who had not received CBO support over time (YC) with a group of similarly aged children who were CBO attenders (CCC). YC baseline refusal rate was 2.5% and retention rate was 97%. CCC baseline refusal rate was 0.7% and retention rate was 86.5%. 1848 children were included—446 CBO attenders compared to 1402 9-13 year olds drawn from a random sample of high-HIV prevalence areas. Data were gathered at baseline and 12-15 months follow-up. Standardised measures recorded demographics, violence and abuse, mental health, social and educational factors. Multivariate regression analyses revealed that children attending CBOs had lower odds of experiencing weekly domestic conflict between adults in their home (OR 0.17; 95% CI 0.09, 0.32), domestic violence (OR 0.22; 95% CI 0.08, 0.62), or abuse (OR 0.11; 95% CI 0.05, 0.25) at follow-up compared to participants without CBO contact. CBO attenders had lower odds of suicidal ideation (OR 0.41; 95% CI 0.18, 0.91), fewer depressive symptoms (B = -0.40; 95% CI -0.62, -0.17), less perceived stigma (B = -0.37; 95% CI -0.57, -0.18), fewer peer problems (B = -1.08; 95% CI -1.29, -0.86) and fewer conduct problems (B = -0.77; 95% CI -0.95, -0.60) at follow-up. In addition, CBO contact was associated with more prosocial behaviours at follow-up (B = 1.40; 95% CI 1.13, 1.67). No associations were observed between CBO contact and parental praise or post-traumatic symptoms. These results suggest that CBO exposure is associated with behavioural and mental health benefits for children over time. More severe psychopathology was not affected by attendance and may need more specialised input.

Abstract  Full-text [free] access 

Editor’s notes: This study is novel in both its research question and its methodology. The study aims to assess whether receipt of support from community-based organisations (CBOs) impacts the mental and social well-being of children in high HIV prevalence areas. The CBOs studied include many different organisations with diverse services, giving the study the benefit of assessing the overall impact of a combination of small, motivated groups. This helps lend credibility to CBOs and to convince policymakers and funders to support small-scale CBOs.

In terms of methodology, the study utilises two longitudinal datasets from southern Africa to explore the study aims. One survey is from a study of children affected by HIV served by CBOs, while the other is from a study of children affect by HIV without CBO support. There are some limitations to using two different studies, most especially unclear comparability and, in this case, lack of control data to adjust for possible differences, for example on socio-economic status or how HIV specifically affected the child. Despite these, this paper has striking results, and is an innovative effort to improve our understanding of the impact of CBOs on children’s well-being and should spur further creativity in impact evaluation methods.

Africa
South Africa
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Understanding barriers and facilitators to uptake and adherence of ART under Option B+ in Lilongwe, Malawi

Why did I stop? Barriers and facilitators to uptake and adherence to ART in option B+ HIV care in Lilongwe, Malawi.

Kim MH, Zhou A, Mazenga A, Ahmed S, Markham C, Zomba G, Simon K, Kazembe PN, Abrams EJ. PLoS One. 2016 Feb 22;11(2):e0149527. doi: 10.1371/journal.pone.0149527. eCollection 2016.

Causes for loss-to-follow-up, including early refusals of and stopping antiretroviral therapy (ART), in Malawi's Option B+ program are poorly understood. This study examines the main barriers and facilitators to uptake and adherence to ART under Option B+. In depth interviews were conducted with HIV-infected women who were pregnant or postpartum in Lilongwe, Malawi (N = 65). Study participants included women who refused ART initiation (N = 10), initiated ART and then stopped (N = 26), and those who initiated ART and remained on treatment (N = 29). The barriers to ART initiation were varied and included concerns about partner support, feeling healthy, and needing time to think. The main reasons for stopping ART included side effects and lack of partner support. A substantial number of women started ART after initially refusing or stopping ART. There were several facilitators for re-starting ART, including encouragement from community health workers, side effects subsiding, decline in health, change in partner, and fear of future sickness. Amongst those who remained on ART, desire to prevent transmission and improve health were the most influential facilitators. Reasons for refusing and stopping ART were varied. ART-related side effects and feeling healthy were common barriers to ART initiation and adherence. Providing consistent pre-ART counseling, early support for patients experiencing side effects, and targeted efforts to bring women who stop treatment back into care may improve long term health outcomes.

Abstract  Full-text [free] access 

Editor’s notes: Option B+ is a policy recommendation of World Health Organisation (WHO) that offers all pregnant and breast-feeding women living with HIV, life-long antiretroviral therapy (ART), regardless of CD4 count or clinical stage. Few studies have examined the challenges faced by pregnant and breast-feeding women, as they navigate the prevention of mother-to-child transmission cascade. The objective of this study was to identify the main barriers and facilitators to uptake and adherence to ART under Option B+ in Lilongwe, Malawi. This was done by conducting qualitative interviews (n=65) with women living with HIV who were pregnant or post-partum and had initiated ART, and women who refused or had stopped treatment.

The most important facilitator for initially starting and remaining on ART was the need to prevent transmission to their infants and to maintain health (prevent illness). Furthermore, ART was viewed as a solution to women’s health issues. This was especially the case when women believed that their health problems were associated with their HIV infection. There were a number of reasons that emerged for refusing ART. For most women the urgency of having to initiate ART under Option B+ was a major challenge. Women felt that they needed time, either to discuss their status with their partner or to accept their own status. In particular, the desire to speak to their partners emerged quite prominently reflecting a fear of disclosure and concern about their partner’s reaction. Another reason was generally feeling healthy before initiating treatment. Women wanted to wait until their health declined before initiating treatment. Religious beliefs did not play a significant role for most women. Only one woman refused because she believed that God, not healthcare providers, would tell her when she needed to start treatment. Side effects were the most commonly reported reason for stopping ART. Half of the 26 (N = 13) respondents who stopped ART did so because they experienced side effects, which included dizziness, nausea or vomiting, nightmares and hallucinations (9%). Women who had side effects also expressed challenges with food security. Side effects made some women question the efficacy of ART. The lack of partner support was another important barrier to ART adherence as women reported fear of disclosing their status to their husbands. Interestingly, although partner support was factored into women’s decision making, in most cases it was not the main consideration. The majority of partners (n=44) accepted their wives’ status, often sending reminders to take ART every night. However, many women did not return to the clinic even though their partners accepted their status (N = 17). One woman, for instance, took the money her husband gave her for transport to the clinic and spent it on other things. Forgetting to take pills or losing pills were other reasons given for lack of adherence. Stigma within the community was acknowledged as an issue, but there were few reports of overt discrimination. Further, even though some women refused or stopped ART, many of them re-started for reasons such as, feeling encouraged by a community health worker (CHW) or someone like a CHW. This was through their monthly home visits to check on women’s use of ART and to provide treatment support such as explaining the side-effects, counselling husbands and encouraging women to re-start. Decline in health, fear of future sickness, as well as reduction in side-effects were mentioned as reasons for re-starting on ART.

Overall, study authors mention that in the context of Option B+, inadequate time in preparing to initiate ART, as well as side effects emerged as more significant barriers as compared to previous studies on barriers and facilitators in non-Option B+ contexts. Economic barriers to care did not emerge as very significant in this study when comparted to other studies; however, a lack of food affects the severity of side effects. This suggests that economic barriers may manifest as an indirect mechanism that affects ART use. A strength of this study is the use of in-depth interviews with a range of women; not just women who stayed on ART, but also women who refused, stopped and re-started in the context of Option B+. Even though there might be overlap between the findings here and other qualitative research, particular barriers become more salient for women initiating ART in the context of Option B+. In prior assessments, women were only initiated on ART after being immunologically compromised, an assessment which often took longer than a month. This gave women time to reflect and accept their condition and communicate with their partner. In the case of Option B+ women felt they needed this time to prepare. The study demonstrates that challenges with uptake and adherence to ART remain. More time and support for women in decision-making, consistent pre-ART counselling, and support with side-effects may contribute to improvements in the long-run. As ART becomes increasingly normalised, some of these barriers may disappear.

Africa
Malawi
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Exploring community perceptions of community health workers roles in chronic disease management in western Kenya.

Community perceptions of community health workers (CHWs) and their roles in management for HIV, tuberculosis and hypertension in western Kenya.

Rachlis B, Naanyu V, Wachira J, Genberg B, Koech B, Kamene R, Akinyi J, Braitstein P. PLoS One. 2016 Feb 22;11(2):e0149412. doi: 10.1371/journal.pone.0149412. eCollection 2016.

Given shortages of health care providers and a rise in the number of people living with both communicable and non-communicable diseases, Community Health Workers (CHWs) are increasingly incorporated into health care programs. We sought to explore community perceptions of CHWs including perceptions of their roles in chronic disease management as part of the Academic Model Providing Access to Healthcare Program (AMPATH) in western Kenya. In depth interviews and focus group discussions were conducted between July 2012 and August 2013. Study participants were purposively sampled from three AMPATH sites: Chulaimbo, Teso and Turbo, and included patients within the AMPATH program receiving HIV, tuberculosis (TB), and hypertension (HTN) care, as well as caregivers of children with HIV, community leaders, and health care workers. Participants were asked to describe their perceptions of AMPATH CHWs, including identifying the various roles they play in engagement in care for chronic diseases including HIV, TB and HTN. Data was coded and various themes were identified. We organized the concepts and themes generated using the Andersen-Newman Framework of Health Services Utilization and considering CHWs as a potential enabling resource. A total of 207 participants including 110 individuals living with HIV (n = 50), TB (n = 39), or HTN (n = 21); 24 caregivers; 10 community leaders; and 34 healthcare providers participated. Participants identified several roles for CHWs including promoting primary care, encouraging testing, providing education and facilitating engagement in care. While various facilitating aspects of CHWs were uncovered, several barriers of CHW care were raised, including issues with training and confidentiality. Suggested resources to help CHWs improve their services were also described. Our findings suggest that CHWs can act as catalysts and role models by empowering members of their communities with increased knowledge and support.

Abstract  Full-text [free] access 

Editor’s notes: As community-health workers are becoming an integrated part of the health care systems in Kenya, more information is required on how they are perceived by the communities they serve. This qualitative study explores perceptions on the role of community-health workers in chronic disease management.

Generally, community health workers are well received by the communities. They are perceived as an enabling resource in generating awareness on specific health issues and promoting positive health seeking behaviours. However, some negative perceptions were raised by several study participants, including their inability to maintain confidentiality and their sometimes limited or inaccurate knowledge on specific health issues, due to limited training.

Suggested resources to strengthen the role of community health workers in engaging communities in chronic disease management include additional training. Also information tools e.g. brochures, posters and charts and participation in larger communities’ awareness events e.g. through community gatherings. These findings are particularly useful for other community-health worker programmes to promote positive health seeking behaviours including successful linkage and retention in care.

Africa
Kenya
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