This study highlights the importance of multisectoral engagement to co-design interventions for people with TB. Meaningful participation during both a Delphi Survey and subsequent national workshop afforded valuable feedback to tailor a psychosocial intervention to reduce TB stigma that was perceived to be suitable, acceptable, feasible, and potentially scalable. During this study, a scoping review produced a long-list of interventions, a Delphi Process whittled those interventions into a shortlist, and a workshop-built consensus in order to co-design a single community-based psychosocial support intervention to reduce stigma amongst people with TB through four key, inter-related activities: individual counseling and initial assessment; monthly peer-led group counseling; peer-led individual support; and community-based TB Talks.
The renewed emphasis on community and civil society engagement in research is crucial and should encompass all relevant stakeholders, including those affected by the diseases in question, community leaders, policymakers, and healthcare workers, in order to promote equitable involvement in addressing health challenges.31 Extensive peer-reviewed literature and reports underscore the potential benefits of community engagement, including enhancing the community's understanding of the issues being investigated, improving researchers' capacity to identify community needs and priorities, and emphasizing the need for culturally sensitive communication and research approaches.17,18,32,33
TB Stigma is a particularly sensitive issue, as evidenced by our previous study with more than 600 people with TB in seven provinces of Indonesia, which showed that 61% of people with TB experience stigma, hindering them from disclosing the disease.7 Based on these findings, we resolved to co-develop an intervention to reduce this heavy burden of TB stigma, as well as depression due to TB, in Indonesia, in a way that was appropriate, feasible, and acceptable to people with TB, their communities, and the health system. Among various forms of community engagement in research, this study utilized two main approaches: inviting all relevant stakeholders in listing the priorities through a Delphi survey and in discussing the potential intervention through a national participatory workshop. Engaging in the early phases of the main, larger study, helped to identify issues not covered in existing literature and reports.34 We committed to facilitate co-learning by helping all participants understand the research process and committed to have a strong partnership by inviting as diverse a group of stakeholders as possible, in terms of their backgrounds, experiences, and skills sets, in order to gain a variety of perspectives and multi-dimensional feedback.35–37
During the co-development of the intervention, people with TB voiced their personal needs, and others’ needs that they have observed during TB treatment, emphasizing the importance of the sharing and listening process for meaningful community engagement. This emphasis on listening is a crucial element in involving the community to contribute meaningfully to scientific advancements, moving beyond mere as a fulfillment of requirements stipulated by grant funders as a checkbox for community engagement throughout the study.34 It is imperative to ensure that the intervention co-development process adheres to the fundamental principles of reciprocal and equitable relationships, demonstrating that participants are central to this collaborative development, with decision-making defined by consensus.35
Recognizing that community engagement is an ongoing and iterative process, it is crucial to involve participants throughout all study phases, extending beyond the intervention co-development phase. Promoting this ongoing involvement as a key factor to successful delivery of any intervention, we communicated to all workshop participants that they would be invited to subsequent phases, including during both implementation and analysis and evaluation phases.34 A multilevel community-based intervention that extends to individuals with TB, their families, and the local community can address stigma and depression, and find effective solutions simultaneously.38,39 However, some participants raised concerns about feasibility because of the short timeframe of the implementation project that would be a considerable challenge for implementing such multilevel intervention activities.
To address this, a more feasible approach was devised but still considering such activities which can foster people’s resilience against stigma and depression, encourage their treatment adherence, boost the utilization and retention of available healthcare services, and empower participants to safely disclose their disease status to supportive individuals. Initial assessments and individual counseling at healthcare facilities were deemed appropriate and feasible to identify stigma and mental health issues, emphasizing voluntary participation in group counseling without any pressure. Through individual psychological counseling, TB program officers could identify and approach individuals choosing not to join group counseling but identified as having mental health problems, directing them to receive additional psychosocial support. This is a critical step since TB stigma, as also discussed during the workshop, can result in high level of depression or anxiety and need for further treatment.7
The participatory workshop, which included individuals experienced in providing psychosocial support, also aided in discerning effective and ineffective strategies. For instance, encharging TB survivors with leadership of group counseling and facilitation might result in suboptimal outcomes due to challenges with and lack of training in communication skills and counseling. Identifying partners to facilitate group counseling became a crucial step, drawing on diverse experiences to weigh the pros and cons. The final intervention activities determined general practitioners as the most suitable partners to collaborate with TB survivors in facilitating group counseling. Moreover, the workshop also highlighted that whoever the facilitators of the group counseling, they should be firstly well-trained, and a development of training module is an imperative. It is also critical to hold training of the trainers for the sustainability and replicability of the intervention in other areas. Further, there must be suitable plans in place, agreed by consensus, on appropriate remuneration for time devoted to facilitating and counselling activities.
Additionally, the study suggests that regular communication for support of people with TB and their households is crucial through accessible and user-friendly platforms, such as WhatsApp or other social media groups.39,40 Led by TB survivors, this communication group allows individuals with TB to reach out anytime they encounter clinical or psychosocial problems, whether through personal lines or group channels.
This study has some limitations. First, not all stakeholders who were invited attended the workshop. However, the absence of three civil society organizations, which were recognized for their extensive experience in offering social support, was compensated for by representatives from alternative organizations that contributed substantial feedback. Second, the different participants’ backgrounds in each group could enrich perspectives but can also undermine the process and success of the intervention co-development because of asymmetric power dynamics amongst participants.41 Particularly in workshops with numerous stakeholders, individuals with TB may feel hesitant to speak and might perceive themselves as inferior or in some way less worthy, in terms of educational level, socioeconomic status, ethnicity, health, and gender. In this study, we sought assistance from POP-TB, a TB survivor organization with an extensive network in Indonesia, to identify the most suitable individuals, who can speak in public and have either personal experience of stigma or experience in support provision, to attend the workshop and share their insights. We also mitigated the potential for the power asymmetry between participants by assigning one facilitator (AF, MAN, TP) in each group to guide the discussion. While facilitating the group discussion, facilitators encouraged all participants to give their opinions and reiterated the importance of mutual respect for all participants in the decision-making processes of each group. As per the Delphi Survey, the facilitators clarified any queries but did not give their own opinions or encourage or discourage any specific decision.