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SANKOFA: a multisite collaboration on paediatric HIV disclosure in Ghana

Reynolds, Nancy R.a; Ofori-Atta, Angelab; Lartey, Margaretc; Renner, Lornad; Antwi, Sampsone; Enimil, Anthonye; Catlin, Ann Christinef; Fernando, Sumudinief; Kyriakides, Tassos C.g; Paintsil, Elijahh,i

doi: 10.1097/QAD.0000000000000725
Editorial
Free
SDC

With the scale-up of effective antiretroviral therapy in resource-limited settings, many HIV-infected children are now able to survive into adulthood. To achieve this potential, children must navigate normative developmental processes and challenges while living with an unusually complex, stigmatizing, potentially fatal chronic illness and meeting the demands of treatment.

Yet many of these children, especially preadolescents, do not know they are HIV-infected. Despite compelling evidence supporting the merits of informing children of their HIV status, there has been little emphasis on equipping the child's caregiver with information and skills to promote disclosure, particularly, when the caregiver faces a variety of sociocultural barriers and is reluctant to do so. In this study, we present the background, process and methods for a first of its kind collaboration that is examining the efficacy of an intervention developed to facilitate the engagement of caregivers in the process of disclosure in a manner suitable to the sociocultural context and developmental age and needs of the child in Ghana. We also report preliminary data that supported the design of the intervention approach and currently available domains of the data system. Finally, we discuss challenges and implications for future research.

aYale University School of Nursing, West Haven, Connecticut, USA

bDepartment of Psychiatry

cDepartment of Medicine

dDepartment of Child Health, University of Ghana School of Medicine and Dentistry, Accra

eDepartment of Child Health, School of Medical Sciences, Kwame Nkrumah University of Science and Technology and Komfo Anokye Teaching Hospital, Kumasi, Ghana

fPurdue University

gYale Center for Analytical Sciences

hDepartment of Pediatrics

iDepartment of Pharmacology & Public Health, Yale University School of Medicine, New Haven, Connecticut, USA.

Correspondence to Nancy R. Reynolds, PhD, Yale University, West Campus, P.O. Box 27339, West Haven, CT 06516, USA. Tel: +1 203 737 2313; fax: +1 203 737 4480; e-mail: nancy.reynolds@yale.edu

Received 13 April, 2015

Revised 13 April, 2015

Accepted 13 April, 2015

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Introduction

In the era of expanded access to antiretroviral therapy (ART) in resource-limited settings, the landscape of paediatric HIV care has dramatically changed. Millions of children infected with HIV at birth are now living longer and with better quality of life [1,2]. Yet, these successes pose new challenges, as children with perinatal HIV infection survive into adolescence and adulthood. One challenging, but critical aspect of care not being adequately addressed is disclosure of an HIV diagnosis to the infected child in a timely, age-appropriate manner [3].

Disclosing an HIV diagnosis to the infected child has been recommended by leaders in the field for over a decade [4,5]. This recommendation is consistent with child rights and research that shows disclosure may confer several benefits, importantly, improved adherence to therapy, clinical outcomes and psychological adjustment and lower risk of transmitting HIV when the child becomes sexually active [5–8]. However, in sub-Saharan Africa, which is home to 91% of the world's estimated 3.34 million children infected with HIV, disclosure recommendations have generally not been implemented [1,3,9]. It is estimated that in some regions, as many as 80% of these children have not been informed of their HIV status [10–12].

Guidelines published by the WHO, the American Academy of Pediatrics and others conceptualize disclosure as a process and recommend that disclosure should be initiated by the healthcare provider or caregiver incrementally in a manner tailored to the child's cognitive and emotional development [4,5,13–18]. Although available guidelines provide guidance on appropriate ways to disclose an HIV diagnosis to children of different levels of maturity, there is a paucity of data on how to aid the initiation of disclosure when healthcare providers and caregivers are persistently reluctant to do so. Our preliminary research has furthered our understanding of the problem and informed the development of a paediatric disclosure intervention that is designed to change the behaviour of ‘nondisclosers’ in Ghana (where the rates of nondisclosure are high), as well as guide the process of disclosure in a socioculturally appropriate manner once initiated. This article provides an overview of the problem in Ghana and the design and progress of the ongoing trial (ClinicalTrials.gov Identifier: NCT01701635) that is testing the intervention in Ghana.

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HIV and paediatric disclosure in Ghana

The HIV epidemic in Ghana is characterized by a relatively low, but stable prevalence estimated at 1.3% nationally in 2013 [19]. Among the 224 488 persons estimated to be living with HIV in Ghana, 34 557 are children [19]. A National Strategic Plan for HIV and AIDS (NSP) was developed for 2011–2015 with an overall goal of virtual elimination of mother-to-child transmission (MTCT) of HIV [19]. An MTCT programme was deployed to all regions in the country [20]. In 2013, HIV prevalence amongst pregnant women attending antenatal clinics was 1.9%, a drop from 2.1% in 2012 [19]. With ongoing improvements to the ART programme, it is estimated that 69% of children with advanced HIV now receive ART services [19].

Although Ghana has made impressive gains through the implementation of the multisectorial national strategies, the full range of care needed for children already living with HIV is not being achieved. Disclosure of HIV status is a complex and crucial component in the continuum of HIV. With greater access to therapy, a particularly important advantage of disclosure is the potential for better treatment adherence [21,22]. Nevertheless, in research conducted in Ghana to date, the prevalence of disclosure to children is estimated at only 21–53% and 35–45% of children taking ART have been found to have suboptimal adherence [10,23]. Although complete disclosure of HIV status has been associated with improved adherence to ART, partial and nondisclosure can strain the relationship between the caregiver and the child and prompt defiance and nonadherence by the child [22,23]. These findings underscore the need for protocols to facilitate disclosure.

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Preliminary research and guiding framework

Building on the findings from an earlier study [10], we interviewed a sample of providers and caregivers in Ghana to identify factors influencing paediatric disclosure and to inform the development of a culturally appropriate and acceptable disclosure intervention. Participants were recruited from the Korle-Bu Teaching Hospital in Accra, Ghana, and interviewed in separate focus groups by an experienced moderator using open-ended questions. Interview data were audio taped, transcribed verbatim and systematically analysed by the investigators using inductive techniques.

Similar to findings from other studies conducted in sub-Saharan Africa, disclosure was found to be a controversial and difficult issue among the healthcare providers and caregivers interviewed in Ghana. The caregivers (n = 7; mean age 38) described several factors as barriers to disclosing an HIV diagnosis to children, including parental concern about upsetting the child, or the child being unable to cope with the information, fear of the child telling others of the diagnosis and being stigmatized, fear of extreme anger by the child at the parent's responsibility for transmission and the parent's desire for the child to live without the burden of knowledge of the diagnosis. Nondisclosure was viewed as justifiable given these considerations. Yet, at the same time, the caregivers perceived the importance of children being informed of their diagnosis to facilitate cooperation with necessary self-care/treatment and to avoid transmission to others. Caregivers were especially reluctant to disclose to younger children and perceived that they lacked the necessary skills to disclose and believed that it should be handled by the healthcare provider who they presumed had the requisite skills (e.g. communication, discretion and knowledge about HIV to answer child's questions). The providers (n = 10) also identified advantages to disclosing an HIV diagnosis to the child (e.g. better cooperation and adherence to the treatment regimen, prevention of transmission), but described a number of barriers to a clinic-based approach. Prominent among these was the lack of time, the current clinic culture (including limited attention given to the topic generally) and concerns about potential detriment to the child if disclosure was not handled competently. Providers also expressed discomfort about their skill level and thought it was important for the caregivers to handle the disclosure.

Drawing from our preliminary data, as well as extant empiric and theoretic knowledge, we developed a structured, culturally relevant HIV paediatric disclosure intervention that could be delivered as an integral component of routine HIV healthcare in Ghana. The intervention is termed ‘Sankofa’, a traditional Ghanaian concept that is literally translated to mean ‘It is not wrong to go back for that which you have forgotten’. The content of the intervention is guided by an HIV paediatric disclosure model that incorporates bioecological systems theory [24] and core elements of the Information-Motivation-Behavioural Skills (IMB) model of Health Behavior Change and other applications of it [25–28] and it is designed to facilitate the initiation as well as the process of disclosure over time. The IMB model postulates that health-related information, motivation and behavioural skills are important determinants of whether or not a health behaviour is performed; a person who is well informed, motivated to act and has the skills and confidence to take action is more likely to initiate and maintain behaviours that produce positive outcomes. Hence, health interventions should be focused on dispersing effective health information that is relevant to the target health behaviour and specific to a population, increasing personal motivation and social support and skill-training to increase self-efficacy for performing a behaviour. With the integration of bio ecological systems theory [24] and current recommendations [5], the IMB-based disclosure model situates the core IMB variables within the cognitive-affective, socio-cultural environment, developmental age of the HIV-infected child and the relationships that form the caregiver's and child's environment in which disclosure occurs (Fig. 1).

Fig. 1

Fig. 1

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SANKOFA protocol

Study aims and design

We are currently conducting a trial that compares the SANKOFA disclosure intervention as well as usual care (n = 378) with usual care alone (control; n = 378). The primary outcome is the rate of caregiver disclosure at 1-year follow-up. In addition, we are examining factors predictive of caregiver disclosure and the effect of disclosure on ART adherence and health outcomes. Data are collected at baseline and longitudinal outcomes evaluated every 6 months for 3 years postentry (Fig. 2).

Fig. 2

Fig. 2

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Study sites and sample

Caregiver–child dyads (N = 756) are enrolled from two tertiary HIV clinics in Accra and Kumasi, Ghana with a similar socioeconomic structure and healthcare infrastructure. The clinics take care of over 3500 children including those with confirmed HIV diagnosis. The sites were selected because they have the patient population and infrastructure (e.g. laboratory facilities, experienced clinical investigators) that support successful conduct of the study. Ethical clearances were obtained from institutional review boards of each hospital, the Ghana Health Services and the Yale University Human Investigation Committee.

All HIV-infected children receiving care at the two clinics ages 7–18 years and who were started on ART within 12 months of study enrolment and who do not know their HIV diagnosis (based on caregiver account and medical records confirmation) are eligible to participate in the study. Children with congenital or developmental disorders, conditions (e.g. sickle cell, diabetes) that require frequent clinic visits or hospitalizations, or those with an AIDS-defining illness or end-stage AIDS are excluded.

The study was designed to achieve 90% power (alpha = 0.05) at detecting a hazard ratio of 1.3 (equivalent to a higher detectable proportion disclosing in the intervention group of 30% when the proportion disclosing in the control group is 21%). The total sample size of 756 (N = 378 per group) takes into account the duration of enrolment (3 years), with a minimum follow-up of 1 year for the primary outcome of interest, and an expected attrition rate of 20% during the study period.

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Study entry

During regular clinic visits, the study is introduced to caregivers who have not disclosed their child's HIV status. If the caregiver is interested in learning more about the study, the designated site project staff member screens, fully explains the study and obtains written consent from the caregiver and assent from the child. Baseline data are then collected. Data collection interviews are conducted by a trained interviewer mainly in English, the official language in Ghana and the language of instruction at schools. To avoid inadvertent disclosure of a child's status, children are assented and interviewed in the presence of their caregivers, while the caregivers are interviewed without their children present. Children assent to provide general information about their health and well being.

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Randomization

The study sites were randomized by a coin flip to either receive the disclosure intervention (intervention arm) or to continue their current disclosure practice (control arm). Site randomization was used to avoid cross-contamination within the same clinic where elements of the disclosure intervention administered to the intervention group might filter into the control group [29,30]. The sample is stratified by age groups (7–11 and ≥11years of age). Enrolment into the two age group strata (7–11 and ≥11 years of age) was implemented after the random allocation of the two sites to either the intervention or control arm; once an age stratum is filled at each site, no additional participants will be enrolled into that stratum. This is done to ensure that there is a sufficient representation of children in each age group at each site.

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Description of the study arms

Experimental group – SANKOFA paediatric disclosure intervention as well as usual care

The experimental group receives the theory-guided Sankofa intervention as well as usual care. As summarized in Tables 1 and 2, the intervention is family-centred and uses an adherence and disclosure specialist (ADDS) to deliver the intervention. The ADDS is familiar with the sociocultural norms of the community and, in keeping with the guiding model, is trained to target modifiable information, motivation and behavioural skills of caregivers to facilitate their engagement in the process of disclosure in a manner suitable to the developmental age and needs of the child [3,8,18].

Table 1

Table 1

Table 2

Table 2

Standardization of intervention delivery in accordance with the principles of the disclosure intervention is achieved by use of a manualized intervention protocol. The ADDS received training until mastery of the protocol was demonstrated. As part of the content validation, the ADDS maintains a log of each contact that details date, length of visit, whether full intervention protocol was completed, content of visit discussion and difficulties encountered and strategies used to manage them. Participant exposure to the intervention is quantified both in terms of the number of contacts and time spent in each contact.

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Control group – usual care

Participants in the control arm receive usual clinic care wherein the provider assesses the caregiver's disclosure readiness, but typically does not discuss disclosure unless impelled by queries of the caregiver or child. To prevent the rate of disclosure at the intervention site being confounded by the time/attention of the ADDS, an attention control ADDS is employed. This individual meets with the caregivers and provides general health information (e.g. medication adherence) and answers questions the caregivers may have. Given that our disclosure intervention has not demonstrated feasibility and efficacy, the trial design meets equipoise. If the intervention is successful, we plan to collaborate with the National AIDS Control Programme to scale it up nationally.

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Data collection

Data are collected at baseline and follow-up with standardized instruments (summarized in Table 3) [31–41] that were selected in accordance with our guiding conceptual model and prior studies [16,42]. The primary outcome is the proportion of caregiver disclosure of paediatric HIV at 1-year follow-up. Other outcomes of interest are information, motivation and behavioural skills of the participants, health outcomes (medication adherence, viral and immunologic markers, mental health parameters) and fidelity and acceptability of the disclosure intervention.

Table 3

Table 3

A web-accessible and interactive database system, developed at Purdue University, is used for the acquisition, storage and exploration of and other study data. The system is built on top of the HUBzero cyber infrastructure (http://hubzero.org), which uses web-based data technology components to create a secure and private (compliant with HIPPA regulations), customized database. The interactive nature of the database is illustrated in Fig. 3 and described fully elsewhere [43].

Fig. 3

Fig. 3

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Analyses

Statistical analyses will be conducted on an intention-to-treat sample. Where appropriate, hypotheses will be tested by independent statistical analyses using mixed models procedures to test for the effect of group assignment (intervention vs. control), time and the interaction between assignment and time. Analysis will be carried out to account for different impact on different age groups. Possible correlation between individuals within each of the two sites will be assessed during analysis by taking into account the intracluster correlation coefficient. Interval-censored survival analysis techniques will be used to analyse the primary outcome. In addition, the proportion of participants with disclosure will be compared between the two study arms using Chi-square methods.

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Progress to date

A team of bi-national (Ghanaian, U.S./Ghanaian and U.S.), multidisciplinary investigators with complementary individual and collective expertise were assembled for development and execution of the trial. The investigators at the participating institutions have worked together closely on implementation of the project. The project was launched with an intensive, 3-day face-to-face team meeting held at a location off-site in Ghana. The meeting focused on training in all aspects of the study procedures and building collaborative team relationships and patterns of open communication, an important consideration among team members with different disciplinary backgrounds, culturally informed assumptions and patterns of communication that could be constrained by hierarchical norms. This was followed by weekly Skype calls with the U.S. and Ghanaian investigators and project coordinators, monthly Skype calls with the full team and intermittent Skype and e-mail communication carried out on an ‘as needed’ basis. In addition, one of the U.S. investigators meets with the Ghanaian investigators in Ghana at least quarterly and follow-up face-to-face meetings are held with the full team annually.

Critical to the success of the project to date have been the two dedicated on-site project coordinators (one full time at each site), development of a close working relationship among team members and regular, open communication that has facilitated prompt action when needed and monitoring of project data in ‘real-time’ with use of the web-accessible database system.

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Participant baseline characteristics

Nearly one-half of the target caregiver–child dyads have been enrolled (from January 2013 to July 2014). Sixty-six percent (N = 298) of the caregiver/child dyads screened (N = 451) have been enrolled to the study. Refusal of the caregiver or child has accounted for 15% of caregiver/child dyads who were not enrolled to the study. Enrolment and characteristics of the participants have been comparable at the two sites (see Table 4). The mean age of the caregivers is 41 years, roughly 60% are HIV positive and 80% are female. The children are 50% female with a mean age of 10 years. No adverse events have been reported to date, even among participants who have elected to disclose while enrolled in the study.

Table 4

Table 4

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Unexpected challenges

Among the challenges encountered thus far are factors that have had an unexpected influence on the participating clinic operations including a lengthy physician strike and irregularity of paediatric antiretroviral medications available for distribution at the participating sites. Shortages of CD4+ reagents and viral load tests kits have also been challenging as has the unexpected change in some of the children's caregivers during the course of the study follow-up.

It was anticipated that some participants, given low levels of education, would have difficulty completing the self-report study questionnaires independently. This is handled by collecting the data orally in face-to-face interviews. However, a related, unanticipated issue has been the difficulty some participants have rendering responses in scales with a graded response format (e.g. 1–7 Likert-type scales). In order to facilitate an understanding of the meaning of the numeric gradations, the interviewers have developed a culturally familiar, pictorial aid, such as food baskets filled to different levels, to signify amount of agreement with the questionnaire statement.

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Discussion

Despite compelling evidence supporting the merits of informing children of their HIV status, disclosure of HIV to infected children is lagging. Little emphasis has been placed on equipping the child's caregiver with information and skills to promote disclosure, particularly, when the caregiver faces a variety of sociocultural barriers and is reluctant to do so. The purpose of this ongoing project is to provide information on the efficacy of a structured disclosure intervention that can be integrated into usual care in resource-limited settings to facilitate the engagement of caregivers in the process of disclosure in a socioculturally, developmentally appropriate manner.

The project builds on our preliminary and ongoing work in Ghana and the complementary expertise of the team; together, they provide a socioculturally contextualized understanding of the problem and inform the content and structure of the disclosure intervention that is being tested. Our preliminary work shows a variety of sociocultural contextual barriers and deficient skills drive the persistent reluctance of caregivers and healthcare providers to inform children of their diagnosis. We propose that several key factors may be modified and the process of disclosure promoted with an intervention approach that is grounded in behavioural and bioecological systems theory.

The project is progressing well with nearly half of the target caregiver–child dyads enrolled to date. Success may be attributed to a number of factors, including the strength of the working relationships between the bi-national team, the web-accessible database system and the interest and engagement of participants in the project.

Implementation has not been without challenges. One unanticipated issue of note to date is our use of standardized Likert-type self-report measures in a population with lower numeric literacy than the population in which the measures were originally developed and tested. The literature is replete with information on methods for the cross-cultural adaptation of self-report questionnaires for use in a new country, culture and/or language in order to reach equivalence between the original source and target setting [44–46]. However, little attention has been given to methods to reduce error associated with numerical literacy [47–50]. In this study, we elected to retain the established response anchors of the standardized measures, but use a pictorial aid to enhance comprehension. We acknowledge the potential limitations of this approach and think that it is an important area for further study.

Randomization by site is advantageous in that it allows us to control for contamination across individuals within the study sites. However, this design introduces the potential for baseline differences between treatment and control groups and correlation between individuals within each site. When comparing differences in outcomes achieved, we must account for the fact that two participants sampled from a single site are more likely to be similar (in terms of outcomes) than two participants sampled from different sites. Compared with trial designs in which individuals are randomized, the SANKOFA trial design introduces greater complexity as nonindependence must be assessed and corrected analytically as indicated.

Generalizability of the study may be limited by a few factors. The sites selected for conduct of the study offer the advantage of an infrastructure to support conduct of the study with rigor. It is acknowledged that the level of clinical research expertise available at these sites may not be representative of other HIV treatment centres in Ghana, but resources important for the delivery of the intervention are likely to be available at most sites. The intervention is delivered by a clinic staff member and designated as the site ‘disclosure specialist’. This approach was selected because it was thought to be both practical and a potentially effective, sustainable model. The clinic staff member is knowledgeable of local sociocultural norms and the challenges of living with HIV. In the role as ‘disclosure specialist’, the clinic staff member becomes the ‘point person’ and agent for change over time. It is possible that this specialist approach could limit generalizability of the intervention to other sites with more limited resources. This warrants further examination. Findings from this study should provide some insight, as we are assessing the total amount of time the specialist spends in delivery of the intervention and other aspects of feasibility.

In conclusion, the low prevalence of disclosure underscores the need for a systematic and a staged approach in disclosing HIV status to infected children in resource-limited countries. Findings from this study will show whether a culturally relevant, standardized disclosure intervention that can be integrated into routine clinical paediatric HIV care can improve the welfare of children and their caregivers in Ghana. Results from this project will also contribute to a better understanding of factors and processes driving paediatric HIV disclosure as well as methods for use in future studies.

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Acknowledgements

We thank the Sankofa Project caregiver and child dyads for their participation. We are grateful to the staff at Pediatric AIDS Clinics at Korle-Bu and Komfo Anokye Teaching Hospitals and the Ghana–Yale Partnership for Global Health for their support. We would also like to acknowledge the full roster of study team members by site: Elijah Paintsil, Nancy Reynolds, Tassos Kyriakides, Xiangyu Cong and Yram Foli, Yale University, USA; Lorna Renner, Margaret Lartey, Angela Ofori-Atta, Jonas Kusah Tetteh, Joyceline Assimeng, Obedia Akweley Seaneke, Dramani Yakubu, and Kevin Bonsu, Korle-Bu Teaching Hospital, Accra, Ghana; Sampson Antwi, Kofi Aikins Amissah, Anthony Enimil, Amina Alhassan and Irene Pokuaa Ofori, Komfo Anokye Teaching Hospital, Kumasi, Ghana; Ann Christine Catlin, Sumudinie Fernando, Ruwan Egoda Gamage, Ruchith Fernando and Sudheera Fernando, Purdue University, USA.

This study was made possible by a grant from NIH/NICHD (R01HD074253). The content of the study is solely the responsibility of the authors and does not necessarily represent the official view of NIH.

Nancy Reynolds did the conception and design of the work, analysis and interpretation of data, drafting manuscript.

Angela Ofori-Atta and Tassos Kyriakides did the conception and design of the work, analysis and interpretation of data, revising manuscript for important intellectual content.

Margaret Lartey and Sampson Antwi did the conception and design of the work, interpretation of data, revising manuscript for important intellectual content.

Anthony Enimil did the acquisition and interpretation of data, revising manuscript for important intellectual content.

Ann Christine Catlin did the conception and design of the work, drafting and revising manuscript for important intellectual content.

Sumudinie Fernando did the conception and design of the work, revising manuscript for important intellectual content.

Elijah Paintsil did the conception and design of the work, analysis and interpretation of data, drafting and revising manuscript for important intellectual content.

All authors gave final approval of this version and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Funding for this study was provided by National Institutes of Health (NIH), Eunice Kennedy Shriver National Institute of Child Health & Human Development (R01 HD074252).

ClinicalTrials.gov Identifier: NCT01701635.

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Conflicts of interest

There are no conflicts of interest.

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Keywords:

clinical trial; disclosure; Ghana; HIV; intervention; paediatric

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