Stigma is a complex social issue that arises when certain attributes, such as being diagnosed with tuberculosis (TB) or other infectious diseases, become associated with stereotypes. This association leads to the unfair labeling of individuals, attributing to them undesirable qualities and behaviors, making people become discriminated against. Tuberculosis-related stigma in healthcare workers and facilities can impact the local and global efforts to ending TB.
To date, stigma continues to be one of the most significant barriers to overcoming the TB epidemic, particularly within healthcare facilities and in the community at large. Despite the crucial role stigma reduction plays in ending TB, interventions in this area are often underfunded. The reason? This is partly due to the absence of clear guidelines and documented best practices. To address this gap, KNCV Tuberculosis Foundation led a project focusing on reducing TB-related stigma in healthcare settings while evaluating the impact of TB-stigma reduction measures.
“How you talk to patients and to other healthcare workers matters. I now think twice before I speak.” (Participant, Allies Approach training in Kazakhstan)
An initiative to reducing tuberculosis-related stigma in healthcare facilities
The project was implemented in different countries, including Malawi, Kazakhstan, and Nigeria, with the primary objective of generating evidence on the effectiveness of TB-related stigma reduction interventions among healthcare workers and within healthcare facilities. A key component of the project was to adapt the original KNCV Allies Approach course to ensure relevance for diverse settings and target audiences. Concurrently, another aspect was to reduce the barrier for accessing the resource for stigma reduction, particularly during the COVID-19 pandemic. Derived from the primary objective of the project, an element included building capacity for implementation, adjusting the stigma reduction tools for different contexts, and measuring the impact of these interventions. The project also sought to inform World Health Organization (WHO) recommendations, ensuring they are grounded in evidence from a variety of healthcare environments, culturally different settings and diverse populations.
Challenges to evaluating TB stigma measurement tools
The project revealed important insights into the challenges of evaluating stigma reduction interventions. In some cases, the assessment tools may not have been sensitive enough to detect subtle changes in attitudes and behaviors, particularly among participants with prior experience in TB care. In addition, cultural differences and contextual factors may have influenced participants’ responses, making the evaluation process as complex as stigma itself. The team involved in this project suggested that a more in-depth qualitative assessment tool could provide a better understanding of the impact of interventions to address stigma.
Despite the challenges in measurement, there was an overall positive feedback from participants suggesting that the Allies Approach significantly impacted TB-related stigma reduction in healthcare settings. Participants in Kazakhstan and Malawi, in particular, reported improvements in their interactions with patients and a reduction in stigmatizing behaviors.
“After the course, I realized we were working incorrectly with patients due to our unawareness, routine, and heavy workload. This training made me more aware of how we should truly care for our patients.“(Participant, Allies Approach training in Kazakhstan)
These findings underscore the importance of continuing to refine and implement stigma reduction tools, as well as developing more effective methods for assessing their impact. Ultimately, the evidence generated from this project could strengthen WHO recommendations and contribute to global efforts to eliminate TB-related stigma through person-centered strategies. Tuberculosis-related stigma in healthcare workers and facilities can impact the local and global efforts to ending TB as stigmatization hampers efforts to provide timely care, initiate and complete treatment, and encourage contact screening and preventive measures.
Lessons learned and way forward
“You see, we have community champions who are already empowered. What about somebody who is at the grassroots, who doesn’t have this information? How can we cascade this information to the grassroots, so that then everybody gets empowered?” (Participant, Hybrid Allies Approach training)
In Kazakhstan, feedback from healthcare professionals who participated in the training was overwhelmingly positive. Participants reported that the course materials, particularly modules on vulnerability, shame, and patient-centered communication, were highly relevant to their work. Despite challenges related to the hybrid training format, such as self-monitoring and scheduling, participants found the training impactful. They highlighted the importance of verbal and non-verbal language in reducing stigma and noted that the training improved their understanding of TB-related stigma, leading to better communication and interactions with patients.
Similarly, in Malawi, the evaluation of the Allies Approach training indicated positive outcomes. Participants mentioned increased empathy towards individuals affected by TB and an increased awareness of stigma. The course and training materials were seen as beneficial in enhancing their attitudes and approaches towards TB-related stigma, suggesting that the training was effective in altering perspectives and behaviors. However, discrepancies between assessment results and participant feedback highlighted the complexity of measuring changes in stigma and the urgency to the matter. The project team identified several potential reasons for this, including the limitations of the assessment tool and the time required for changes in attitudes and behaviors to manifest and evaluate.
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