PATA Research

The PATA network provides an unparalleled opportunity to witness events on the ground and monitor and record bottlenecks, challenges and successes. This is the purpose of PATA’s research portfolio, launched in December 2012.


Challenges and facility-level solutions identified by frontline healthcare workers to scale up high quality paediatric HIV treatment and care

H.S. Soeters1, N. Sugandhi2,3, L. Hatane1, T. Runciman1, D. Mark1,4

1Paediatric AIDS Treatment for Africa, Cape Town, South Africa, 2Clinton Health Access Initiative, New York, USA, 3Icahn School of Medicine Mount Sinai, New York, USA, 4Department of Psychology, University of Cape Town, Cape Town, South Africa

Background: There are an estimated 5.8 million HIV-infected children and young people in sub-Saharan Africa, yet only 24% of eligible children are receiving ART. Policy makers and programme managers require an informed understanding of service barriers and bottlenecks to providing paediatric and adolescent care at the frontline in order to translate health polices into more responsive practice.

Methods: The PATA 2014 Continental Summit was held in December 2014 to mobilize local action, share innovations and best practices, and disseminate guidance and technical updates. Thirty-seven health facilities from 18 sub-Saharan African countries, represented by 142 frontline HIV healthcare workers, five ALHIV and YPLHIV, and eight Ministry of Health representatives, participated in the summit which used expert plenaries, interactive workshops and peer-peer exchange to identify facility-level barriers, share best practices and generate concrete plans to take facility-specific action. Descriptive statistics and framework analysis were used to analyse reported barriers and planned facility interventions.

Results: The mean age of participants was 40 years, with a female majority (76%). Counsellors, community healthcare workers and social workers were most represented (28%). Collectively, health facilities cared for 53,048 children and adolescents in care (mean per facility, 487). Frontline healthcare worker and stakeholder groups reported key challenges and shared best practices along the continuum of care (Table 1).

Healthcare workers designed 37 related quality improvement interventions to effect practical change at facility-level. Interventional activities and services focused on community health education and demand generation; healthcare worker training, mentorship, sensitization and job aids; and child- or adolescent friendly services. In summit evaluations, >90% of participants reported that expert input was valuable, peer-peer exchange helped in identifying bottlenecks and solutions, and intervention planning helped to clarify and define goals they could achieve over 12 months.

Conclusions: Frontline HIV healthcare workers and stakeholder groups identified major challenges in providing quality paediatric and adolescent HIV treatment and care, and developed practical solutions for implementation. Convening healthcare workers to provide capacity-building, sensitization and support can motivate and inform facility-designed interventions and services that respond to the needs of children and adolescents living with HIV.



Key challenge/s

Best practice/s

HIV case finding

Lack of entry points for testing children and adolescents

1. Routine HIV testing in high yield settings

2. Community education and demand generation

Linkage to HIV treatment and care services

1. Lack of child- or adolescent-friendly services

2. Stigma and myths

Healthcare worker training, mentorship, sensitization and job aids

Adherence and retention

Poor caregiver support

Caregiver support

Community and multisectoral engagement

1. Poor linkages and referrals with related health services

2. Staff shortages, negative attitudes and poor knowledge

3. Lack of child- or adolescent-friendly services

Community education and demand generation

Operational infrastructure and staffing

Staff shortages, negative attitudes and poor knowledge

1. Developing active linkages and referrals with related health services

2. Child- or adolescent-friendly services


Transitioning HIV-infected children and adolescents into adult HIV programmes: Barriers and recommendations from frontline HIV healthcare workers in sub-Saharan Africa

H.S. Soeters1, L. Hatane1, E. Toska2, B. Vale2, D. Mark1,3

1Paediatric AIDS Treatment for Africa, Cape Town, South Africa, 2Department of Social Policy and Intervention, UNIVERSITY of Oxford, Oxford, United Kingdom, 3Department of Psychology, UNIVERSITY of Cape Town, Cape Town, South Africa

Background: With the mass rollout of ART, many of the 1.2 million HIV-positive children and adolescents living in sub-Saharan Africa will survive into adulthood. As the first cohort of adolescent survivors reaches adulthood, evidence-based models of effective transition from child- to adult-centred healthcare facilities are urgently needed. Current data suggests that this particular age group is vulnerable to high levels of attrition within the continuum of care. Effective transition planning therefore becomes critical to overall HIV prevention, treatment and care within this key population. In order to advance the development of context-specific recommendations and best practices for successful transition, this study aims to identify barriers to and facilitators of effective transition in sub-Saharan Africa.

Methods: Eighty-one HIV practitioners from twenty health facilities in Burundi, Ethiopia, Kenya, Rwanda, Tanzania and Uganda participated in this cross-sectional comparative study and completed a semi-structured questionnaire in English/French. Univariate statistics and a framework analysis approach were used to analyse quantitative and qualitative data respectively.

Results: The mean age of the sample was 35 years, with a female majority (57%). Most health facilities were urban (77%), with a mean of 8,427 paediatric and adult patients in care. Nurses (25%) and doctors (20%) were most represented in the sample. Health practitioners attended to an average of 37 children per day. Almost half of represented facilities did not implement transition plans and a similar proportion of practitioners were not trained to support transition. The most frequently  reported transition age was 18 years (range: 13-22 years), with the biggest challenges to successful, timeous transition being the population’s diverse age spectrum and associated needs, developmental traits associated with adolescents, maladaptation to change, and insufficient clinical management and services.  Operationally, lack of specialist adolescent-friendly services, training, policy, guidelines and planning were the primary obstacles. HEALTHCARE PROVIDERS also recommended service improvement in patient tracking, early preparation for transition, psychosocial support and health education.

Conclusions: Frontline HIV practitioners in sub-Saharan Africa acknowledged gaps in their transition services, especially those related to soft infrastructure such as training and policy. Key recommendations included better translation of plans into practise, with a focus on clinical and psychosocial support areas.


HIV practitioner understanding and implementation of paediatric palliative care in Southern Africa and Nigeria: Observations from the frontline

H.S. Soeters1, S. Essajee2, L. Sherr3, S. Rollnick4, J. Altschuler5, L. van Bodegom, J. Marston6, A. Kiboneka7, M. Evans1, R. Norman8, C. Penn9, E. Obimbo10, S. Stulac11, P. Onguti12, D. Mark1, 13

1Paediatric AIDS Treatment for Africa, Cape Town, South Africa, 2Clinton Health ACCESS Initiative, Boston, United States, 3UNIVERSITY College London, London, United Kingdom, 4Cardiff UNIVERSITY, Cardiff, United Kingdom, 5Tavistock Clinic, London, United Kingdom, 6International Children´s Palliative Care Network, Bloemfontein, South Africa, 7UNIVERSITY of Botswana, Gaborone, Botswana, 8University of Copenhagen, Copenhagen, Denmark, 9UNIVERSITY of the Witwatersrand, Johannesburg, South Africa,10University of Nairobi, Nairobi, Kenya, 11Partners in Health, Boston, United States, 12Kilgoris District Hospital, Kilgoris, Kenya, 13Department of Psychology, University of Cape Town, Cape Town, South Africa

Background: As antiretroviral ACCESS expands in sub-Saharan Africa, HIV has become a chronic disease requiring long-term palliative care. Paediatric palliative care remains poorly developed on the African continent despite its importance to providing holistic HIV services to children living with the disease. In order to progress the expansion of these services in the high-burden Southern African sub-region and Nigeria, this study aimed to determine what local healthcare practitioners understand paediatric palliative care to be, as well as establish and describe the associated services they routinely provide.

Methods:Using a cross-sectional study design, we invited 75 paediatric HIV healthcare practitioners from 20 health facilities in 11 countries (Angola, Botswana, Lesotho, Malawi, Mozambique, Namibia, Nigeria, South Africa, Swaziland, Zambia and Zimbabwe) to complete a semi-structured questionnaire in English or Portuguese. Participants defined paediatric palliative care in their own words and illustrated their associated service provision by narrative and case example. The World Health Organisation (WHO) definition of palliative care was classified into five key domains indicative of palliative care, and practitioner definitions and service descriptions coded according to these domains using a framework analysis approach.

Results:Most practitioners were female (73%), and the sample’s mean age was 38 years (range 20-59 years). Most represented urban health facilities (68%), and consulted to a mean of 36 paediatric HIV patients per day. Participants had a diverse understanding of palliative care, with the WHO definition’s five key domains (‘quality of life’, ‘family’, ‘life threatening’, ‘pain’ and ‘comprehensive care’) mentioned by just 30%, 26%, 57%, 52% and 44% of participants respectively in their own definitions. No practitioners identified all five domains, and just 9% identified four domains. Novel domains mentioned by participants included ‘nutrition’, ‘welfare’ and ‘resource provision’. Health facilities are however offering services that address these five domains, with 22 of the 30 routine services described by participants in line with one or more domains of the WHO definition. The most widespread associated services OFFERED by health facilities include psychosocial support for children, adolescents and caregivers through counselling (36%) and support groups (29%), as well as medical support such as pain management (20%), medication dispensing (19%), health education (19%) and home-based care (19%). Of the 21 case example services described by participants, 12 were related to one or more of the key domains, of which medical support was the most frequently mentioned service (47%), followed by psychosocial support (42%) and family support (37%).

Conclusions:Frontline paediatric HIV practitioners defined palliative care distinct from the WHO definition. Despite this, the paediatric HIV services they provide are aligned with and address the key aspects of paediatric palliative care. Enhancing paediatric HIV practitioner education around palliative care is warranted.


PATA and WHO situational anaysis of adolescent HIV treatment and care in sub-Saharan Africa

The World Health Organisation (WHO) and Paediatric AIDS Treatment for Africa (PATA) collected data to for the Adolescent Technical Treatment meeting held in Geneva in September 2014. This meeting was held to aid in the prioritisation of adolescent content for the updated 2015 Consolidated ARV Guidelines and to support the development of the adolescent treatment research agenda and strategy. The purpose of this work was to conduct a collection of facility based programmatic data on adolescent HIV services with a focus on adolescent treatment. To complete this research, PATA disseminated the Adolescent HIV care & Treatment survey throughout the PATA network reaching 285 clinics across Sub-Saharan Africa. The research’s conclusions were fed into the WHO revised guidelines, as well as back to the PATA network so that clinicians and people working with adolescents on the ground can better understand the context of their own work with adolescents.


Integrating early childhood development (ECD) programmes into the paediatric HIV treatment response: Community health worker programmes in sub-Saharan Africa at the forefront

L. M Hatane1, P.C. Nkubizi1, V.Djoumessi1, D. Altschuler1,2, N. Renaud2, S. Jackson2, J. Altschuler1,2, Dr. D. Mark1

1Paediatric AIDS Treatment for Africa, Cape Town, South Africa

2One to One Children’s FUND, London, United Kingdom

Background: An expansion beyond the narrow child survival agenda is needed to effectively respond to HIV-affected children’s well-being. A comprehensive model, incorporating a range of services including early child development (ECD), health, nutrition, and protection is required. The healthcare system is a potential entry point for engaging young children and their caregivers for ECD. The integration and translation of ECD services into practise within health facilities is key to sustainability and will rely on healthcare practitioner capacity. This study provides an overview of promising community health worker practices, highlighting key activities and challenges experienced within health facilities when integrating ECD.

Methods: 44 health facilities across 16 countries in sub-Saharan Africa that have CHW programmes participated in this cross-sectional comparative study and completed a semi-structured questionnaire in English/French. Univariate statistics and a framework analysis approach were used to analyse quantitative and qualitative data respectively.  

Results: 68% of facilities report providing ECD services, primarily defined as play, nutritional support, caregiver education/ counselling, and less frequently loss to follow-up tracing, early infant diagnosis, monitoring physical milestones and child-focused support groups. 75% provide child-friendly spaces, 93% utilise a disclosure policy, 86% undertake home visits, 80% OFFER nutritional support and 100% provide support groups and/or counselling. Facilities’ two primary challenges in providing ECD services relate to reliance on caregivers who do not provide consistent care, and insufficient resources, human capacity and space to undertake child-centred psychosocial activities. Results also indicate a small but important lack of understanding, especially regarding the age focus and range of services typically included in ECD programming.

Conclusion:  CHW programmes are an effective vehicle for integrating ECD programmes into health facilities. Requisite capacity in health facilities must include a commonly defined understanding of ECD, infrastructure and resources to facilitate the integration and implementation of ECD services against clear operational standards.


Linking Communities to Care

Background: Mother to child transmission (MTCT) of HIV results in 700 children being infected every day.  Increasing prevention of mother to child transmission (PMTCT or eMTCT) services coverage will reduce this number further in the future, but there are limits to health sector interventions that do not have community input.

Description: The Positive Action for Children FUND (PACF) launched in March 2010 is a £50million initiative to support communities to help end MTCT. Through December 2013, the PACF was supporting 140 grantees in 30 countries.   Community interventions integrated and linked to local clinics address key issues such as loss to follow-up, preventing unintended pregnancies and early infant diagnosis (EID).

In order for community based organisations (CBOs) to be successful  at supporting health responses around eMTCT, they need to be able to enter into a partnership with their local health service provider (clinic, hospital, outreach facility) with an expertise to add and the ability to partner effectively.  For the health system, the PACF has found wants partners that will complement their existing services helping to plug gaps and optimise services.  Importantly they need to respect the capabilities of local CBOs and trust that they will continue to exist in the future.

Lessons Learned: In order to support local communities around eMTCT, the PACF had to develop a technical assistance (TA) programme in support of CBOs.  The TA comprises organisational capacity building, subject matter knowledge in HIV and eMTCT and training on partnering.   85 PACF grantees are currently in the TA programme.

100% of PACF partners in the TA programme are currently partnered with their local health facilities addressing issues such as loss to follow-up and EID.  As a result of PACF partnerships 401,888 people have been reached (through July 31 2013) with prevention activities and 118,241 have been driven into the health system for PMTCT services.

Discussion: CBOs are an essential partner in addressing eMTCT.  They do not always have the skills and expertise to work with local health services as equals and targeting specific areas of need where their unique skills can be put to best use.  TA is therefore as important as grant FUNDING to ensure that eMTCT responses are optimised at a local community level.


The impact of employing people living with HIV as community health workers on paediatric and adolescent HIV services in sub-Saharan Africa: Expert Patient Programme 2007-2013

F. Mpungu1, N. Renaud2, J. Altschuler 2,3, S. Jackson2, Y. Chong1 and D. Mark1,4

1Paediatric AIDS Treatment for Africa (PATA), Cape Town, South Africa

2One to One Children’s Fund, London, United Kingdom

3 Tavistock Clinic, London, United Kingdom

4Department of Psychology, University of Cape Town, Cape Town, South Africa

Issues: Community health workers (CHW) play an important role in scaling up antiretroviral therapy (ART) through task-shifting and community outreach. The impact of employing people living with HIV (PLHIV) as CHW in paediatric and adolescent HIV services has not been widely investigated.

Description: The Expert Patient Programme was launched in 2007, and currently employs 198 PLHIV as ‘expert patients’ (EPs) across 49 clinics/hospitals in 16 sub-Saharan African countries. Each health facility receives $260 monthly to employ EPs to perform task-shifting activities and community outreach. EP Supervisors provide training and mentorship. Quantitative and qualitative data from EP applications and 6-monthly EP Supervisor reports across 2007-2013 were analysed using univariate statistics and a framework analysis approach.  

Lessons learned: The mean age of EPs is 37 years (range 19-64 years), the majority being female (87%). Approximately half of EP facilities are urban (55%), caring for 41,744 paediatric patients (4,314 infants, 24,312 children and 13,118 adolescents). There is an average of 4 EPs per facility. The most highly represented countries in the programme are South Africa, Malawi, Kenya and Rwanda (range 5-8 facilities). The most common tasks undertaken by EPs are patient education/support (77%), community/home visits (73%), childcare services (68%), pharmacy assistance (64%) and nutritional support (55%). EPs receive a mean of 41 hours of supervision monthly (range 4-168 hours). Performance appraisals are carried out by 73% of facilities. Most facilities (96%) include EPs in weekly team/case meetings. EPs work a mean of 70 hours per month (range 18-180 hours). The most commonly reported EP training topics across 2007-2013 were: adherence counselling, psychosocial support, nutritional, community outreach, basic HIV education, clinical services, communication skills and administration. On average, each EP provides basic clinical services to 61 children, basic pharmacy assistance to 53 children, administrative services to 43 children, nutritional support to 35 children, adherence counselling to 32 children, childcare services to 28 children, community/home visits to 9 children and income-generation education to 6 families monthly. EPs facilitate a total of 203 support groups monthly, benefiting 8,061 children, adolescents and parents/caregivers. These groups focus on health education, nutrition, ART, psychosocial support, disclosure, overcoming stigma, PMTCT and sexual and reproductive health. According to 6-monthly EP, clinic staff, child and caregiver reports/testimonies across 2007-2013, the programme has resulted in improvements in clinic flow, defaulter rates, loss to follow-up and communication (clinic operations); psychosocial, FINANCIAL, educational and health status (EPs); workload, teamwork and efficiency (clinic staff); psychosocial status, adherence and retention (children) and psychosocial status, HIV knowledge, and engagement in the cascade of care (caregivers).

Next steps: The Expert Patient Programme is greatly improving paediatric and adolescent HIV services across sub-Saharan Africa. EPs are significantly impacting patient education/support, community outreach, and broader childcare, pharmacy, nutrition and clinical services. EPs do contribute to scaling up ART and should be replicated. Five advancement activities have been identified to increase the programme’s impact: standardised EP training; advocating to integrate EPs into health structures; regulation of EP conditions of service; EP mentorship and supervision and programme expansion. 

Paediatric HIV; task-shifting; community health worker; people living with HIV; expert patient


Acceptability and challenges of rapid ART initiation among pregnant women in a pilot programme, Cape Town, South Africa

Black S1Zulliger RMarcus RMark DMyer LBekker LG.

Maternal antiretroviral therapy (ART) is a critical intervention in the prevention-of-mother-to child transmission (PMTCT) of HIV. In South Africa, many HIV-infected pregnant women commence ART late in pregnancy, and as a result, the duration of ART prior to delivery is often insufficient to prevent vertical transmission. To address this, we designed an intervention for the rapid initiation of ART in pregnancy (RAP), where patient´s ART preparation occurred during rather than before treatment commencement. Here we report on the acceptability and the challenges of the RAP programme. We conducted 7 key informant and 27 semi-structured interviews with RAP participants. Participants were purposefully selected based on ART-eligibility and stage in the pregnancy to post-partum continuum. Interviews were conducted in participants´ home language by trained fieldworkers, with key informant interviews conducted by the study investigators. The data were analysed using a framework analysis approach. Rapid initiation in pregnancy was acceptable to the majority of programme participants and protection of the woman´s unborn child was the primary motivation for starting treatment. The key barrier was the limited time to accept the dual challenges of being diagnosed HIV-positive and eligible for life-long ART. Truncated time also limited the opportunity for disclosure to others. Despite these and other barriers, most women found the benefits of rapid ART commencement outweighed the challenges, with 91% of women initiated onto ART starting the same day treatment eligibility was determined. Many participants and key informants identified the importance of counseling and the need to make an informed, independent choice on the timing of ART initiation, based on individual circumstances. Acceptance of ART-eligibility improved with time on the programme, however, as women´s principal reason for initiating ART was protection of the unborn child, monitoring and supporting adherence during the post-partum period will be critical.