For a summary of participants included in the study, see table 1.
Table 1: Summary of participants
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Stakeholder group
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Number of participants
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Additional notes
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National Department of Health policymakers
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2
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This included a participant with experience working in TB policy.
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Provincial Department of Health policymakers
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6
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From three provinces: Western Cape, Eastern Cape and KwaZulu Natal.
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Local health structure representatives
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6
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This included district and city level health managers in the City of Cape Town in the Western Cape province.
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Civil Society Leaders
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3
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Organisational representatives involved in TB advocacy on national and local level
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Community Health Workers
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5
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Based in Khayelitsha, Western Cape.
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Community representatives
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4
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One community representative was also a traditional leader, one had background in school food schemes, all were based in Khayelitsha, Western Cape.
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Total
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24
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We developed the following themes regarding the implementation of the TB Recovery Plan in South Africa: the potential for COVID-19 innovation and urgency to influence TB policy development and implementation (theme 1), participant recommendations for closing the TB policy-implementation gap (theme 2) and strengthening the engagement of communities in TB policy implementation (theme 3).
Theme 1: Potential for COVID-19 innovation and urgency to influence TB Recovery Plan development and implementation.
The TB Recovery Plan was released within the broader context of the COVID-19 pandemic, and many participants mentioned the COVID-19 pandemic as a model for what an engaged, effective response to an infectious disease threat could look like. In considering the National DoH’s response to the COVID-19 pandemic, policymakers §§
escribed the sense of urgency associated with responding to COVID-19, which they felt was lacking for TB. The global response to the COVID-19 pandemic and the sense that anyone can be affected was central to the momentum. One participant pointed out that, ‘People cared about COVID because their families were dying. No one is going to care about TB until it starts actually affecting them.’ – participant 2
Stakeholders reflected on the extensive resources dedicated to COVID-19, both globally as well as in South Africa. They also described the health system costs of focussing attention on a single disease – TB resources such as GeneXpert machines were redirected to the COVID-19 response and this led to weakening of the TB response, as well as negative impacts on other priority health programmes. A local implementer said, ‘We need to put the money where our mouths are. We can’t just talk about making things [referring to TB] a priority ... and talk about ‘Oh this is an emergency’... but you not giving the resources that are required to really elevate the response.’ - participant 9
Participants drew parallels between the devastation caused by TB (which they viewed cumulatively as very serious) and COVID-19 (which posed an acute emergency) but described how TB the programme was sacrificed when COVID-19 became the priority.
The TB Recovery Plan was discussed as a positive response to focus more attention on TB, while incorporating innovations from the COVID-19 pandemic. For example, strategies for following up patients and linking them to care through phone calls from dedicated call centres, and laboratories texting results, were now also recommended for TB. During the COVID-19 pandemic, data dashboards were used to share real time information on the epidemiology of the pandemic and use of resources, such as hospitalisation and use of oxygen and were available to the public. The public-facing TB Dashboard in the Western Cape was an example of how this COVID-19 innovation was being piloted for TB. ‘I think the TB Dashboard will help educate people around TB and it could help raise the profile of TB. If you begin to have such dashboards, you start to make them popular like what you manage to do with COVID dashboards. It’s a good initiative for everyone... for patients and for health care workers – it’s good for disease control.’ – participant 4
Access to COVID-19 data in real-time also helped to evaluate testing targets and compare performance across facilities. The TB Recovery Plan drew on this and placed a strong emphasis on data and monitoring outcomes across the TB care cascade. Civil society representatives mentioned that more needs to be done to make TB data available to CSOs and communities to drive accountability: ‘For political buy-in… If you have the data, you can make them accountable – so collect the data and then make your case, make your demands to whoever is concerned, whether it's a district or it's a province...’ – participant 10
Theme 2: Recommendation for closing the TB policy – implementation gap
Participants recommended four approaches to strengthen future TB policy implementation based on experiences with the TB Recovery Plan. Firstly, they recommended supporting high-level TB champions in the national health system. They noted that to advocate for TB policy implementation from within the national health system, senior TB programme officials have to navigate many obstacles that slow down document review and guideline release. This includes a complex regulatory environment, collaborations between different departments, and tender processes to purchase new drugs. High-level TB champions (for example national DoH representatives that are passionate about TB care) who are supported can usher a new policy through these processes so that its release is timeous, and that the urgency of implementation is communicated to provinces. Engaging a broad group of stakeholders can help raise awareness that the policy is in the pipeline, secure buy-in, including from civil society. ‘We [civil society] had regular engagements, so I'm quite well aware of the different elements [to the TB Recovery Plan] and helped provide input into it.’ – participant 15
Participants described the development of the TB Recovery Plan as a participatory process, led by the National DoH, which helped to recruit more supporters for these high-level TB champions.
Secondly, participants drew attention to the importance of a policy being adequately resourced: ‘The TB Recovery Plan is beautiful, really. But we need to know how it's going to be funded. Look at how fast COVID money came through and why can't the same be done to TB? You know, [what we need is] the political will.’ - participant 9
Inadequate resource allocation was also a barrier to provincial policy implementation, where local implementers felt they did not receive the resources they need, including costed implementation plans. One participant summarised this as, ‘Policies often stop at policy and don’t have implementation plans. When they do have implementation plans, they’re so complicated that nobody can work out how they work, and they don’t have realistic resource allocations. It’s critical to invest in the people, so they understand, and they do what they must do and to give them the tools to do what they must do, but keep it simple, and making sure that there is a resourced plan.’ - participant 15
For example, when implementing the Targeted Universal Testing for TB component of the Recovery Plan (where people at high risk of TB are tested irrespective of whether they have TB symptoms), some policy implementers raised concerns about whether facilities would be able to manage conducting additional GeneXpert tests and its requirements for staffing, sputum booths, laboratory capacity and supply of cartridges. Only a minority of participants felt that there was adequate funding available for TB from local and international sources for core interventions. Several felt that it would be necessary to implement the TB Recovery Plan in a phased way, and to indicate to implementers in which sequence the different parts of a policy should be prioritised.
Thirdly, participants felt that there should be stronger accountability measures in place at provincial level, to ensure policy implementation progresses from national to local level. Several participants mentioned delays and inefficiencies, and one participant highlighted that it was not always clear which mechanisms were in place to ensure provincial policymakers are held accountable for implementation. There were also communication challenges in cascading new policies from provincial level down to the frontline, including to CHWs, community-based non-governmental organisations and community members, who are often not informed about new policies and were therefore unable to contribute to community-led monitoring or demand generation for new TB services. One policymaker said, ‘We still using out dated ways of communicating policies within the [provincial] DoH. It’s via a circular, that’s sent from provincial office and there’s just then an assumption that somehow it’s going to feed down.’ – participant 9
Among our participants, the CHWs and community representatives were not aware of new TB policies, including the TB Recovery Plan. In comparison, the national and provincial-level policymakers, local implementers and CSOs all knew about the plan and many had participated in the policy development process.
Fourthly, even though CHWs were widely recommended as key to the implementation of the TB Recovery Plan, and TB policies more broadly, it was also emphasised that supporting this cadre of health workers has not received sufficient attention and inclusion. Participants gave examples of how CHWs can assist with screening for TB through home visits, helping with retention in care as treatment supporters, and doing contact tracing for those who have been lost to follow up. One participant said, ‘They are one of those critical enablers, part of that social mobilization of getting patients to the end of their treatment as well as getting contacts to the clinic, as well as doing testing out in the community.’ - participant 15
Participant 2 described CHWs’ scope of work as ‘horrifically wide’ – with recognition that the training, support, and supervision that they need is often lacking. One national DoH policymaker said, ‘The CHW is the most misunderstood and badly abused health care worker in our whole team, and yet, they are the foundation of what we should be doing.’ - participant 7
CHW participants made explicit their concerns about the social determinants of health that affect TB patients, including food insecurity, conditions of desperate poverty and poignant experiences of stigma. They felt that they can help voice these priorities for TB patients in discussions about TB policy development and implementation and that this was not sufficiently addressed. Policymaker participants advised that empowering CHWs and formalising their role in TB policy implementation would make a significant impact on whether the envisioned policy achieves its aims. However, they predominantly viewed CHWs as implementers of policy and not contributors to policy development.
Theme 3: Strengthening engagement of communities in TB Policy implementation.
Participants mentioned that historically, in South Africa, communities have been viewed by policymakers as passive recipients of services. While there were some examples of a shift towards community consultation and co-creation, participants felt that national and provincial policymakers needed to engage more proactively with community representatives, instead of being defensive during engagements. As one policymaker noted, ‘There’s still this idea that we as the DoH need to come with something and we will negotiate around it, but certain things will remain non-negotiable ... and we will give a little bit here, but we are not really responding to the needs of the community. And you are actually just making people feel like you are using them and that it’s a tick box exercise … it’s a compliance exercise ... and they become frustrated and then they don’t want to participate anymore.’ - participant 9
Community perspectives emphasized the need to improve knowledge and awareness about TB and noted that getting access to decision makers within government can be difficult, except for CSOs that had a strong national profile. One community participant made a direct request: ‘I believe that if we can receive in-service training or training on recovery plans, we will be able to be aware of it and talk about it in our spaces, such as in our communities and families, as well as traditional ceremonies. … There is a gap in our knowledge as traditional healers where we need further training in order to be able to advocate for TB.’ - participant 16
There was consensus from participants that communities need more engagement on TB policies, through information campaigns and a variety of media, with materials in local languages and distributed beyond health facilities.
Challenges in community members being able to access data on whether targets for policy implementation were being met were raised. CSO participants described how organisations can work closely with communities to promote community-led monitoring – for example engaging with communities on what TB services should be like, discussing common service provision challenges, and doing facility-level investigations to provide feedback. Examples were given of Ridshidze activities in clinics where community members audit clinics for key TB policy indicators, such as whether the urine diagnostic test was available, or assessing turnaround time for GeneXpert results. This approach also incorporates data that is used to compile health service delivery reports for specific districts. Participants viewed access to local data as central for all stakeholders in the TB response to improve accountability.
A provincial participant from KwaZulu Natal suggested broader use of this province’s ‘war rooms’ which is a meeting point for community engagement with government structures: ‘[This is] where community representatives and government departments sit and discuss challenges in a particular community: health related, development related, or anything that worries the community. In those forums, basic data and TB related information can be presented.’ - participant 1
Health committees (where community representations serve on an official structure linked to a health facility) were mentioned as an existing mechanism within the South African health system where communities can potentially contribute to accountability, and that this could be used to track TB policy implementation. Participants highlighted that these committees should include community based CSOs, community leaders, and must be diverse, representative, informed, and empowered. Capacitation is needed to ensure that community members are not simply incorporated into the health facility and that they fulfil their roles as independent observers. Supporting community representatives in their role as health committee members was an area where participants felt CSOs can help drive accountability. ‘We need to create a context where everybody knows that they have a role to play, and they can’t just sit and wait for the Health Department or the TB program to take action.’ - participant 15
Participants also felt that greater CSO representation at all levels of the health system can help to voice community priorities at the different levels of policy development and implementation. ‘Civil society [need] representation at all levels. From the clinic committee to the hospital board, to the District Health Council, to the Provincial Health council and to the National Health Council so that we can represent the community and have an understanding on how these decisions are made.’ – Participant 8
To summarise our key findings from theme 1 – 3, text box 1 presents various ways in which learning from the implementation of the TB Recovery Plan can be translated to different TB policies, including implementation of the new NSP.
Text box 1: Key messages from participants to support future TB policy implementation.
- Current participatory approaches to policy development strengthen national, provincial and civil society awareness of policies, but targeted efforts are needed to engage policy implementers and communities.
- It is important to identify and support high-level champions for TB policies in the national health system.
- Implementation of the TB Recovery Plan and the NSP needs to be adequately resourced which could be addressed through developing costed provincial implementation plans.
- Greater emphasis needs to be placed on accountability measures to ensure translation takes place from national to provincial policy to local implementation.
- To strengthen community-level engagement in policy implementation, policymakers need to value the contributions of CHWs and community members, who should be capacitated to engage and provide input.
- CSOs can help facilitate engagement between policymakers and TB affected communities and play a key role in capacitating communities to engage in policy implementation.
- Strengthening community awareness through improved public communication about TB and TB policies can engage a much wider audience in the national TB response, build a stronger demand for quality services and increase accountability for policy implementation.
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