Community co-design of contextually relevant rheumatic heart disease primary prevention

Abstract

Introduction

Primary prevention of rheumatic heart disease (RHD) is aimed at timely diagnosis and treatment of superficial Group A Streptococcal infections, most commonly Strep sore throat. However, uptake and delivery of primary prevention for RHD-endemic regions has room for improvement. Community co-design is an important aspect of intervention development to increase sustainability and reach.

Methods

Group-level assessment (GLA) sessions were used to understand the community’s priorities and insights around sore throat. Personas, or user archetypes, were then developed to capture the behaviours and characteristics of diverse future users of primary prevention in the district. Finally, these personas were used in community design workshops to identify barriers and facilitators to potential interventions, generate creative solutions to overcome identified barriers and prioritise implementation models based on impact and feasibility. The final list of implementation strategies was presented by workshop participants to the broader community for additional validation and feedback.

Results

The GLA sessions identified five priority areas: (1) need for improved access to care, closer to home; (2) importance of mothers as caregivers; (3) strong influence of community leaders; (4) importance of community health workers and (5) role of traditional providers and practices. Five personas were created, including: hands-on caregiver, restricted caregiver, removed family decision-maker, helpful neighbour and influential leader. Design workshops identified the highest-rated interventions as: decentralisation of care delivery into the community (strategy 1), use of community health workers as key implementing partners (strategy 2) and streamlining sore throat services at public healthcare facilities (strategy 3). Participants proposed potential practical applications of these interventions.

Conclusions

Community-based participatory research identified novel implementation strategies for an RHD primary prevention programme in Uganda. The value set and strategies developed in this study can now be used as guideposts to develop and test a package of implementation strategies for improving RHD primary prevention in Uganda.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Primary prevention of rheumatic heart disease (RHD) is inadequate in low-income and middle-income countries, home to the majority of the 55 million people living with RHD. Scalable, sustainable models are urgently needed to address this global issue. Community co-design is crucial for developing culturally and contextually appropriate interventions, ensuring greater sustainability and reach.

WHAT THIS STUDY ADDS

• This study identifies key community priorities for RHD primary prevention, including improved access to care, the role of mothers and community leaders, and the involvement of community health workers and traditional providers. It highlights three high-impact interventions: decentralising care delivery, using community health workers and streamlining sore throat services in public health facilities. These findings provide a foundation for testing scalable and culturally appropriate primary prevention strategies in Uganda.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• This study offers valuable insights into community-driven strategies for improving RHD primary prevention, which could inform the development of more effective, culturally tailored interventions in similar settings. Its findings may influence policy decisions to integrate community health workers and decentralise care delivery, enhancing the scalability and sustainability of RHD prevention efforts.

Background

Without treatment, up to 3% of children with Group A Streptococcal (GAS) pharyngitis are at risk of developing acute rheumatic fever (ARF), an immunological response that can damage heart valves and lead to chronic rheumatic heart disease (RHD).¹ Early diagnosis of GAS pharyngitis and appropriate antibiotic treatment within 9 days of symptom onset can prevent up to 80% of RHD cases.² However, despite the availability of effective primary prevention, the adoption of these measures remains alarmingly low in many low-income and middle-income countries (LMICs),³ where over 90% of the 55 million people with RHD reside.⁴

Implementing RHD primary prevention in LMICs has been challenging due to barriers such as the high cost of bacteriological diagnosis and low health-seeking behaviour for sore throat.^{3 5 6} The RESET study (Reducing New Cases of Rheumatic Heart Disease through a Community Streptococcal Treatment Program), conducted from 2019 to 2023 in a Ugandan district, tested a pragmatic, multicomponent intervention to address these challenges (ClinicalTrials.gov: NCT05276999).

RESET focused on simplified GAS diagnosis using a clinical decision rule, healthcare worker training on guideline-based treatment and extensive community education about sore throat. The aim was to reduce implementation barriers such as diagnostic costs, insufficient provider training and low health-seeking behaviour. 2 years into the study, our evaluation found that while the programme significantly increased healthcare worker knowledge and community awareness of sore throat, it did not notably improve healthcare centre presentations for childhood sore throat. This gap highlighted the need for a more community-informed approach to understand and address current practices.

In this paper, we describe the process and outcomes of deep community consultation using a community-based participatory research (CBPR) approach. We engaged participants with two participatory research methods to identify key implementation elements for a successful childhood sore throat treatment programme. Using a group-level assessment (GLA) method, we identified community priorities and then incorporated these insights into a series of participatory design workshops. These workshops explored alternative ways to deliver sore throat education, diagnosis and treatment, ensuring a future programme would be contextually and culturally relevant to the community.

Methods

Patient and public involvement

When and how were patients/public first involved in the research?

The public was first involved in the research during the recruitment phase, when they were invited either as a key stakeholder (local village chairman, religious leader, herbalist, nurse, teacher, parent and community healthcare worker) or by the key stakeholders.

How were the research question(s) developed and informed by their priorities, experience and preferences?

The research questions were informed by a previous study in which extensive health worker and community education was employed, but did not improve diagnosis and treatment. The research questions were codeveloped with partners in Uganda to increase our understanding of current community practices in Tororo district, as explained by the community members living there.

How were patients/public involved in

1. The design and conduct of the study?

   Patients were involved in the design and conduct of the study by participating in the GLAs and design workshops. In the GLAs, participants engaged in real-time thematic analysis of sore throat needs and priorities, which led to the distilling of top community priorities. In the design workshops, participants identified barriers and facilitators to a sore throat programme and generated solutions to overcome these barriers.

2. Choice of outcome measures?

   The public was not involved in this step.

3. Recruitment to the study?

   Participating community stakeholders invited two additional community members to participate in the GLAs. The participants of the design workshops were hand-selected by the local research team.

How were (or will) patients/public be involved in choosing the methods and agreeing plans for dissemination of the study results to participants and linked communities?

The public was not involved in this step.

Study setting

This study was conducted with community members in Tororo District, where the parent RESET study was conducted. Tororo District is located in a region with a poverty rate of 35.7%⁷ and is around 200 kilometers east of the Ugandan capital city, Kampala. The district has approximately 609 000 residents, more than half of whom are less than 15 years of age.⁸

Community-based participatory research

This was a two-part CBPR study where the research team partnered directly with community members in each phase of the research process. CBPR, an approach to research that builds on community strengths and resources to generate relevant research goals and increase sustainability, was used as the guiding approach for the project. GLAs, design workshops and personas were used to engage Tororo community members in cocreating a childhood sore throat treatment programme. Participants signed written informed consent for participation. All sessions were conducted in English, with side-by-side translation employed for the minority of participants who preferred another language. Sessions had a lead facilitator and two cofacilitators (members of the research team), as well as 10 community members that supported small group activities during the sessions and provided translation when necessary. Community-driven real-time analysis was integrated throughout the research process.

Part 1: GLA

GLA is a large group qualitative and participatory method intended to engage diverse groups of people with varying lived experiences. Within the GLA process, participants are viewed as the experts of their lives and communities, and accordingly, generate, assess and prioritise data using their own expertise.⁹,¹² For this study, we conducted two GLA sessions, each with a distinct set of community members.

Snowball sampling was used to recruit GLA participants (figure 1).¹³ A list of key stakeholders was generated that included the roles of local village chairman, religious leader, herbalist, nurse, teacher, parent and community healthcare worker. These stakeholder roles were selected to ensure a wide variety of input from different sectors of the community. For each of two sessions, a research nurse confirmed participation of one community member for each category and then invited that participant to bring two additional community members, for a total of 21 invited participants per session (42 in total).

Figure 1. The GLA invitation process. Seven participants were directly invited for each GLA session. These seven participants represented various stakeholders. Each of the directly invited participants was asked to bring along two more participants (from the same stakeholder division) except one who was asked to bring along one more person each. These indirectly invited participants were also supposed to be future beneficiaries of a sore throat treatment programme and willing to contribute to the workshop. This process was repeated twice (once for each GLA session). GLA, group-level assessment; VHTs, village health teams.

GLA sessions were conducted through six discrete steps (figure 2).⁹,¹¹ In step 1 (climate setting), warmth builders and get-to-know-you questions encouraged attendees to engage with the people around them. In step 2 (generating), participants were asked to walk around the room and were given markers to write responses on flip charts that contained open-ended prompts such as “The best sore throat treatment program would include…,”, “People who treat childhood sore throat in our community need to know…” or “The biggest barriers to treatment of childhood sore throat in our community are…” (online supplemental appendix 1) . An example of a completed flip chart can be found in figure 3. In step 3 (appreciating), participants were prompted to move around the room and observe what others had written, and (step 4, reflecting) note any ideas that caught their attention by circling or starring ideas on the flip chart. In step 5 (understanding), smaller groups were formed, assigned ~5 flip chart prompts and instructed to identify three common themes/patterns across the charts. A representative was nominated from each small group to report common themes back to the whole group in a ‘round-robin’ format, with the facilitator recording the major themes on a new flip chart. Finally, in step 6 (selecting), each participant identified their top priority from the major themes. These themes formed the basis for understanding community needs and priorities for development of primary prevention strategies in the subsequent design workshops.⁹,¹² Themes and priorities across the two GLA sessions were distilled by the research team.

Figure 2. Steps of the GLA process. GLA, group-level assessment.

Figure 3. GLA flip chart. An example of a completed flip chart, where participants answered the bolded prompt at the top of the page.

Part 2: Design Workshops

Design workshops are community-engaged events where stakeholders harness collective community knowledge to identify barriers and facilitators to a discrete issue and generate contextually appropriate solutions.¹⁴,¹⁶ In this study, three primary prevention design workshops were conducted over 2 days. Purposeful sampling, using the same key stakeholder roles outlined for the GLA sessions, was used to recruit 10 community participants who were asked to participate in all workshop sessions.

Workshop 1 started with a warmth builder to encourage participant interaction. Following this, participants reviewed the five community priorities developed in the GLA sessions. Next, the facilitator introduced the patient journey map (figure 4) which outlined the core patient points of any primary prevention strategy including: awareness (knowing sore throats need treatment), diagnosis (determining the cause of the sore throat) and treatment (obtaining and administering the correct medication).

Figure 4. Journey map. The journey map illustrates the three key patient points along the patient journey that this programme will aim to address.

Participants were then introduced to the concept of personas,¹⁷ community archetypes that participants used to walk through the patient journey map. For this study, five personas were designed by the local research team, based on the research team’s experience working within the community and scenarios and people described in interviews. Each includes outlined barriers, facilitators, vehicles for engagement and motivators. The five personas include: the hands-on caregiver, the restricted caregiver, the removed family decision maker, the helpful neighbour and the influential leader. The remainder of workshop 1 was spent in small groups, with participants walking these personas through the patient journey map by imagining how the personas would experience each step, to identify facilitators and barriers to each patient point (awareness, diagnosis and treatment).

During workshop 2, participants worked individually, and then in small groups, to imagine possible solutions to the barriers identified in workshop 1. Participants generated innovative interventions for each point on the patient journey map. Using a process of sharing and iterative revision, small groups compared and combined ideas and then reported these out to the larger group, which then ranked each solution in terms of impact and feasibility using sticky notes that were placed on a large matrix (figure 5). A list of the three highest-ranked solutions for each journey map element was then generated. Using a structured worksheet, each participant then took one of these lists home and was instructed to consult with members of their community (friends, family, neighbours) and ask them to rank the proposed solutions in order from most to least desirable, allowing for broader community validation and input. Results from this community consultation were brought back to workshop 3 (figure 6).

Figure 5. Design workshop flip chart. Solution ranking matrix, where participants ranked proposed solutions in terms of feasibility and impact.

Figure 6. Top ranked solutions from design workshop 2.

In workshop 3, the final design workshop, participants were led by facilitators in thinking through the practical applications of the highest-rated solutions. Attendees were prompted to identify the ‘who’, ‘where’ and ‘when’ for each intervention, as well as to identify each solution’s most critical component for success.

Results

Part 1: GLAs

Of the 42 invited, 38 participants attended a GLA session. The median age of participants was 45.5 (IQR 17.8) and 53% male. There was substantial geographic representation with participation from 13 of 17 subcounties in the district. The GLA participants identified five key community priorities that should be considered in the development of childhood sore throat programmes. Priorities included (1) the need for improved access to care closer to home, (2) the importance of mothers as caregivers and decision-makers, (3) the strong influence of community leaders, (4) the importance of community health workers (CHWs) and (5) the role of traditional providers and practices.

Need for improved access to care, closer to home

Responses alluding to a lack of access to personal and public resources to seek sore throat treatment were frequent in both GLA sessions. Feedback from attendees explained that long distances to treatment were deterrents to sore throat diagnosis and treatment, related to poverty and need to avoid out-of-pocket direct (transportation, medication) and indirect (missed work) expenses. Most community members were aware of the recommendation to seek formal evaluation for children who had sore throat (recent RESET campaign); however, many expressed that seeking sore throat treatment was not practical due to long distances to healthcare centres. Participants suggested that a programme addressing geographical proximity, or bringing care closer to where children live, would be more likely to be successful.

Importance of mothers as caregivers

During the GLAs, the idea of mother figureheads (mothers, grandmothers, mothers-in-law, etc) as staples in the identification of child illness was emphasised. Mothers were noted as the most likely first person to notice a child’s sore throat. Additionally, there was an identified cultural emphasis on mothers turning to their mothers and mothers-in-law for health advice. However, the ability of women to make medication decisions for these children, including if they should seek formal diagnosis, was mixed. Some mother figureheads expressed that they could make executive decisions about child healthcare, some indicated they needed permission from the paternal figureheads before acting. Participants explained that empowering mothers as decision-makers could lead to a shift in approaches to treating childhood sore throat.

Strong influence of community leaders

GLA participants vocalised the importance of involving community leaders in mobilising people to seek treatment for their children through sore throat education and awareness. They specifically identified local chairmen (elected village leaders), religious leaders, CHWs and parents. They described the respect and attention community leaders garner, and the importance of leveraging their platforms to educate the community and raise awareness of new programmes. In particular, the group felt strongly that these community leaders could combat misinformation in the community and influence uptake and belief in messaging around the importance of sore throat.

Importance of CHWs

A consistent theme was the need for CHWs, as those closest in proximity to where people live, to be trained to diagnose and provide treatment for sore throat. The strong trust between CHWs and the populations they serve was repeatedly identified. CHWs were the primary answer to prompts such as: “The most trusted health advice in my community comes from…”; “People who are likely to treat childhood sore throat are…” and “If we really want to engage our community in childhood sore throat care we need to…”

The role of traditional providers and practices

There were mixed feelings in the group about the importance of traditional practices and providers in a community sore throat management strategy. Some participants strongly favoured formal government healthcare centres and expressed they were the first line of healthcare services for their family. All, however, agreed that when there is a sore throat in the community, it is common for members to turn to local herbs and religion (ie, prayer). Answers to the prompt “I have seen my friends and family treat sore throat in children by…” included things like using local herbs and drinking waragi (a locally produced gin-like alcohol product). Explanations included that traditional methods are less expensive and closer to home than formal healthcare. Participants also expressed that it was important to align the teachings of traditional healers, which were strong community motivators, that currently conflicted with those in the public health campaign. Resolving these differences and working together with traditional health practitioners was seen as a facilitator to a successful programme.

Part 2: Design Workshops

Of the 10 invited participants, 9 attended the three-workshop series, median age of participants was 55 years (IQR: 24 years), and 89% were male. There was broad geographic representation, with participants from 9 of the 17 Tororo subcounties.

Workshop 2 narrowed ideas down and mapped them to relevant points on the sore throat journey map. Community consultation further prioritised these strategies, with the final identified strategies including decentralisation of care delivery into the community (strategy 1), use of CHWs as key implementing partners (strategy 2) and streamlining sore throat services at public healthcare facilities (strategy 3). The need for continued education and awareness, in part by engaging local leaders to effectively communicate new approaches, was emphasised across all strategies.

Strategy 1: decentralisation of care delivery into the community

The first strategy focused on the key theme of increased access for primary prevention, closer to home. Outreach events were seen to have a dual purpose for education and awareness as well as for diagnosis. Workshop participants identified district health outreach budgets and potentially central implementation partners, such as the Uganda Heart Institute, as funders for such events. Other potential access points were also identified, including school-based sore throat programmes and a model of enhanced pharmacy-delivered diagnosis and treatment. This strategy also tied back to mothers as decision makers, with note that mothers may find it more feasible to seek care for childhood sore throat if access was expanded.

Strategy 2: engage community healthcare workers as key implementing partners

The identification of a key strategy to engage CHWs as key implementing partners reflects the theme that emerged during the GLAs. Again, workshop participants emphasised that CHWs were trusted health professionals who were close to the community. Healthcare centres were seen as the best place for training, as each CHW has a ‘home’ healthcare centre and could serve as an extender for this healthcare centre in the community. Training was felt best delivered by the district health team and national trainers of trainees, a model identified as effective for other diseases by workshop participants. Using a focused algorithm approach, a variety of implementation strategies were identified including community outreach events led by CHWs to raise awareness and identify cases of childhood sore throat, CHWs integrating sore throat evaluation and referral into routine work that included home visits, and village health teams taking on new scope of practice, including diagnosing childhood sore throat in the community and giving out antibiotic treatment. This final approach was identified to have possible regulatory challenges, as medication prescription is outside of a typical CHW practice scope. However, the community thought this could be possible for limited-scope indications. Under this strategy, workshop participants also emphasised adaptability, with the idea that outreach would be needed regularly. Outreach would be prioritised if a health centre notices an increase in sore throat cases, which participants identified as common during the rainy seasons.

Strategy 3: streamline primary prevention care at public health facilities

Streamlining care for childhood sore throat was also a popular strategy among many of the workshop participants. Participants felt that reducing the time spent waiting for care and providing more assurance that care will be available would be highly feasible and would increase care-seeking behaviour. Ultimately, this strategy could be important to decision makers who must weigh the decision to spend often long wait times at a healthcare centre for diagnosis or seek less formal care closer to home. A disease-specific focal person was one implementation model raised. In this solution, a disease-specific champion takes on additional responsibilities such as leading trainings, organising outreach events and tracking data on care delivery for their focal area, a model that has been used for other high-endemic diseases such as tuberculosis and HIV.

Discussion

There is an important opportunity to improve the uptake and delivery of RHD primary prevention globally.^{18 19} This study used CBPR¹⁸ to identify a community value set and package of high-priority strategies that could help close the ‘know-do’²⁰ gap for childhood sore throat care. The strongest message was that access points need to be expanded, and care needs to be available closer to home. We need to strengthen delivery of primary prevention through public healthcare centres and develop innovative solutions to integrate CHWs into RHD primary prevention. These strategies will require further stakeholder co-design to develop implementation strategies that are both acceptable in the population and feasible within the current resource limitations of the Ugandan public healthcare system.

By engaging with the community to identify core values, we gained an understanding of existing community strengths that could facilitate successful primary prevention programmes. This included the key role of CHWs to facilitate health in the community. While CHWs have not, to our knowledge, been involved in RHD primary prevention in sub-Saharan Africa, they have been leveraged to improve care in other regions. In Aboriginal communities in Northern Australia, CHWs are at the centre of an RHD primary prevention programme that includes elements of health literacy, community empowerment, housing and environmental support and health navigation.²¹ A relatively small impact study of this approach showed an encouraging trend towards increasing health-seeking behaviour and eventual fall in incidence of superficial GAS infections and ARF over the 3-year study period.²² In Uganda, it will be important to work with stakeholders to understand how CHWs can best facilitate RHD primary prevention. Important feasibility considerations will include boundaries on scope of practice and how to best integrate alongside other CHW-delivered programmes to conserve resources.

An identified value that requires further exploration is the importance of traditional healers and practices in the community. This topic has recently gained global attention, with a 2023 WHO Summit focused on integration of traditional medicine into the African healthcare system.²³ Recommendations included increased collaboration through programmes such as bonus systems for appropriate referrals between traditional and conventional practitioners, formal training programmes in traditional medicine to increase quality and standardise practice, and increasing formal disease-specific collaborations to improve community reach.²³ Additional work with stakeholders in Uganda will be needed to see if there are ways to include this key group into implementation models for RHD primary prevention.²⁴

This study has limitations. This is a formative, community-led study that focused on identification of new strategies to deliver RHD primary prevention in a single Ugandan district that had been sensitised to the importance of childhood sore throat through a prior programme. The identified approaches require further testing for impact, real-world feasibility and uptake using rigorous implementation science methodology. Furthermore, additional work is also needed to ensure women are appropriately represented in the co-design of implementation strategies. Despite intentions to ensure gender balance, women were underrepresented in the design workshops due to unintentional skewing during participant selection and attendance, which may limit the diversity of perspectives reflected in the findings.

Conclusions

Primary prevention is an evidence-based RHD control strategy that has not reached its global potential. Locally co-designed programmes are needed to develop innovative and sustainable implementation strategies to maximise the benefit of RHD primary prevention. The value set and strategies developed in this study can now be used as guideposts to develop and test a package of implementation strategies for improving RHD primary prevention in Uganda.

The study sponsors had no role in the study design, collection, analysis and interpretation of the data, writing of the report, or decision to submit the paper for publication.

Data availability statement

Data are available on reasonable request.