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KNCV Tuberculosis Foundation

KNCV Tuberculosis Foundation is an international non-profit organization dedicated to the fight against tuberculosis (TB), still the second most deadly infectious disease in the world. KNCV is an international center of expertise for TB control that promotes effective, efficient, innovative and sustainable tuberculosis control strategies in a national and international context.  We are an organization of passionate TB professionals, including doctors, researchers, training experts, nurses and epidemiologists. We aim to stop the spread of the worldwide epidemic of TB and to prevent the further spread of drug-resistant TB. Over the past century we have built up a wealth of knowledge and expertise, initially by successfully controlling TB in the Netherlands. Since the 1970s, we have also shared our knowledge and expertise with the rest of the world. We operate from a central office in The Hague in the Netherlands, a regional office in Central Asia and country offices worldwide. KNCV raises funds from private, institutional, corporate, and government donors.

Introduction

TB is transient. When identified early and treated effectively, TB disease is curable and there is no lingering ‘mark’.  Yet self-stigma often persists beyond the infectious period, after cure, and hinders complete recovery. We posit that some people with TB may isolate themselves as a mean of protecting loved ones from TB. This self-imposed exile, while altruistic, may complicate their receipt of vital social and psychological support.

Many activists argue that self-stigma is among the most important foci of anti-stigma efforts. Therefore, KNCV seeks to contract an individual or organization to produce a multi-level intervention package designed to reduce TB stigma in persons with TB.

Interventions in the package should have as the overarching goal that persons with TB have freedom from self-stigma defined as “a self-concept unaffected by a temporal disease state.” [1]

Intervention packages to combat TB self-stigma are likely to be most effective when they:

  1. Leverage a combination of peer and professional support.
  2. Are adapted to local context and are delivered by people who have survived and thrived after TB.
  3. Address stigma in an intersectional manner. Self-stigma of TB is often hard to treat in isolation from other stigmas.[2] A resource list of other stigma reduction curricula or interventions should be included as well as clear instructions/guidance on how to combine self-stigma interventions.
  4. Address both existential and practical issues.

SPECIFICATIONS:

  1. The work required to reduce self-stigmatizing thoughts and behaviors is made easier when appropriate support services are in place. (e.g. patient support, economic, psychological).Therefore, the intervention package should include practical steps to help persons affected by TB to access and make best use of available economic and social supports.
  2. The intervention should include specific modules on MDR-TB self-stigma, which are likely to be more complex to treat.
  3. The intervention package should include a specific module on the meanings and practices of infection control of air-borne pathogens (e.g. F.A.S.T. triage, physical separation, masking, ventilation and outdoor waiting rooms). Understanding how these practices may be both protective and stigmatizing, and ways to adapt them to ensure that they are minimally stigmatizing will help to address a core dilemma. Infection control practices should be evidence-based, not fear-based and aligned with the goal of enhancing the well-being of people with TB.
  4. Applicants should indicate clearly when and how people should be engaged in relationship to the course of TB treatment and how infection risk should be mitigated if they are potentially infectious.
  5. The intervention package should include a module on the rights of people with TB and the legal and ethical instruments that protect them. (Patients’ rights and responsibilities, WHO Ethics Guidance 2017). If empowerment is an expected outcome of the intervention, it is vital to define clearly what empowerment means in practice and how it would be measured.

Content

Internalized stigma domains that should be addressed in the intervention package include:

  • Stereotype endorsement
  • Shame (comparing oneself unfavorably to the norms surrounding them)
  • Guilt (comparing oneself unfavorably against one’s own standards)
  • Worthlessness (feeling that one is of less value than other people, e.g. who do not have TB.)

Protective factors that should be specifically strengthened via the intervention package include:

  • Self-efficacy
  • Resilience
  • Countering
  • Knowledge of one’s rights

Consequences of internalized TB stigma that should be addressed in the intervention package are:

  • Self-isolation
  • Restricted agency
  • Hopelessness (particularly pertinent in MDR-TB and XDR-TB)
  • Fearfulness

Specific social spheres where the intervention package should focus include:

  • Relationships with health professional and caregivers
  • Intimate relationships, including families
  • Employment spaces

Intervention modalities that could be combined in a self-stigma reduction intervention package include:

  1. Peer support- group countering
  2. Rituals celebrating interim accomplishments (e.g. relief from being non-infectious, TB cure, recovery, etc.)
  3. Role models of perseverance, persistence, etc.
  4. Testimonials and interviews
  5. Visual arts (e.g. Photo Voices)
  6. Theatre, dance, music, (e.g. The Lucky Specials feature film)

Proposals stressing standard “chalk and talk” didactic trainings (where learners are lectured by an instructor as opposed to engaged in participatory adult learning) are discouraged.  Technical knowledge acquisition can be a small part of the intervention package, but successful proposals will engage both cognitive and affective levels.

Ranges of intervention delivery modalities are possible, such as:

  • Virtual reality
  • Web-based learning, blogging, sharing,
  • Cell phone and digital support (What’s APP sharing groups – support)
  • Face to face workshops, meetings
  • Rituals, ceremonies, graduations, aesthetics

Illustrative TB self-stigma reduction content areas include:

  1. Stress-management (e.g. Inquiry-Based Stress Reduction (IBSR))
  2. Management of negative self-judgments
  3. Reframing the meanings of infection control practices and TB disease in general
  4. Improving skills to counter stigma and discrimination by others
  5. Improving people analytic skills to recognize stigmatizing discourses and frames
  6. Build self-esteem, self-efficacy, sense of agency
  7. De-medicalization of the mask – redefining aesthetics of masking
  8. Nutrition
  9. Tips & tricks for coping with TB drug side effects (e.g. how to remove orange-staining (RIF) from clothing, etc.)
  10. Envisioning and planning for one’s post-TB treatment period

We encourage the use of works of art and artistic expression to help people to embrace the beauty, creativity, vitality, and intrinsic worth of people affected by TB.

Modules may contain insights on confidentiality and privacy and the rights of persons with TB to control who and what information is shared about them. For TB self-stigma, there is minimal need to include modules promoting skills for TB disease disclosure, as there is no clear evidence that TB disease disclosure to the wider public has any positive impact on TB stigma at the individual level.

GENERAL INSTRUCTIONS FOR APPLICATION FOR CONTENT DEVELOPERS

KNCV Tuberculosis Foundation is reaching out to scientists, creative change-makers, community leaders, innovators, and justice-seekers to help create the tools to dismantle TB stigma in people with TB, communities with a high TB burden, institutions where TB stigma thrives, and in structures that support TB stigma.

KNCV seeks to develop a series of new interventions to tackle stigmatizing messages, behaviors, and social structures using a heart+head+hands approach.  We believe that to dismantle TB stigma we need to:

  1. a) CHANGE HEARTS: by growing empathy and solidarity
  2. b) CHANGE MINDS: by shifting cognitive processes and improving knowledge, and
  3. c) ALL HANDS: by engaging all stakeholders in the daily labor of making the world more just and healthy for people with TB.

We seek collaborators who can help us to build impactful intervention packages that can be adapted to different settings.  Our tool box will contain clear evidence-based, multi-level stimuli to shift hearts and minds, policies and practice.

Applicants are strongly encouraged to leverage ideas that have worked in reducing other kinds of stigma. In this case, applicants should be able to adapt those existing interventions to address TB and KNCV will provide support on how best to do that, if appropriate.

Leveraging the science of stigma reduction, we seek social and scientifically informed approaches that can be readily adapted and deployed in countries such as: Afghanistan, Bangladesh, Botswana, Cambodia, Democratic Republic of Congo, Ethiopia, Georgia, India, Indonesia, Kyrgyzstan, Malawi, Mozambique, Myanmar, Namibia, Nigeria, Philippines, Romania, Tajikistan, Tanzania, Ukraine, Uzbekistan, Vietnam, Zambia, or Zimbabwe.

Passive learning (e.g. listening, watching) should be limited in favor of more active forms of behavior and attitude change (e.g. doing, discovering, problem solving). The over-use of power point is discouraged.

The package described in the application must reflect a specific behavioral change theory or theory-driven community mobilization approach. We are looking for an individual or organization that understands how to connect behavioral theory to an overall intervention design which leads to outcomes that are measurable and effective in the reduction of TB stigma.

Specifications

  1. Applicants should build their package around a clear theoretically -informed, evidence-based framework that specifies which domains of stigma are being addressed and what is the hypothesized mechanism of stigma reduction for each module. The intervention package must be informed by both theory and practice of TB stigma reduction. Authors should provide citations to any studies supporting the theories underlying the intervention and reasons why it is expected to be effective in reducing stigma.
  2. Applicants should include a prominent role for persons with TB or persons with a history of TB as technical partners in the development of the interventions to ensure the quality and relevance of the interventions.
  3. All intervention packages should include a module specific to the stigmatization of people with multi-drug resistant TB (MDR-TB). Stigma toward people with MDR/XDR TB are likely fostered and sustained by distinct sets of underlying factors.
  4. The intervention package will eventually include an appropriate monitoring & evaluation envelope- (i.e. with measures and stigma scales that map to the specific stigma domains in the intervention). The M&E content will be developed by KNCV in collaboration with authors and is not required as part of the application or the full package.
  5. If interventions need to follow a specific sequence – these implementation guidelines should be specifically explained. The authors should indicate the minimum dosage of the intervention expected to be required to detect any noticeable changes in the expected outcomes and the preferred manner of implementation. Optional or advanced modules of the intervention should be specifically defined.
  6. All TB stigma reduction interventions must be gender-aware and informed by region-specific literature on TB and gender.
  7. In many communities TB stigma may be temporized or potentialized by other powerful stigmas.1,2 So addressing TB stigma, even successfully, will not reduce the suffering of people with TB very much. Applicants should therefore indicate how this intervention could be combined with other anti-stigma efforts.

BRANDING

The materials developed under this contract would be co-owned and co-branded (by the author and KNCV TB Foundation). KNCV would reserve the right to make modifications to the work such as translation, copy editing, and combination with other content. End-users would also be encouraged to tailor to the interventions to the needs of their setting. If the applicants consider aspects of the intervention package to be original works of art ( i.e. not modifiable), this should  be clearly specified.

FUNDING

The proposed budget should not exceed $15,000. Budgets should include the time needed to craft the package by an expert or very small team. Successful applications will likely be those that have already developed similar materials in the past, which need only modify existing materials.

Additional Information

This RFA does not require the applicant to provide graphic design competency as this will be provided. An Instructional Designer and Social Scientist will be available to contribute to ensure the logical coherence between the behavioral theory employed, the interventions developed, the materials developed, and the measurement metrics used (M&E).

Timeline

8 September Annotated outline off the full intervention package (scope of work)
22 September Rough draft of half of the intervention package
6 October Full draft of the intervention package
13 October Technical review feedback from KNCV
27 October Revised draft of the intervention package
3 November Final draft of the intervention package to copy editors and lay out

 

The final published version of the TB Stigma reduction Tool Box will be presented by the authors in The Hague December 13-14th, 2017. Travel expenses for 1 author will be paid by KNCV TB Foundation.

Please note the deadline for submission of the final materials is: November 3rd , 2017

Application Instructions

Interested applicants should supply:

  • A complete application form (three to ten-page) including:
    1. Conceptual framework (Figure 1)
    2. Matrix of Intervention Modalities and Aims (Figure 2)
    3. Matrix of Intervention Delivery mechanisms (Figure 3)
    4. Budget proposal
  • 1 or 2 page track record of the individual or organization in related efforts
  • CVs of the main content developer(s) – highlighting track record in TB and stigma reduction.

Please use the template provided to submit your application.

KNCV TB Stigma Reduction Application Template Final Draft

Reducing TB stigma among health care workers- Sample_Application

EVALUATION

Proposals will be evaluated by a multidisciplinary team. Proposals will be rated according to:

  • The track record of the applicant.
  • The coherence of the link between the theory, tools, and specific outcomes
  • The transformative potential of the package
  • The balance between affective, cognitive, and active change efforts.
  • The likelihood that the applicant can complete the work in the short time period.
  • Budget.

Proposals that are impactful and comprehensive in scope will be preferred over proposals that privilege feasibility, incremental improvement, or traditional chalk+talk methods.

References

  1. Bond V, Nyblade L. Supportive Social Context and Intentions for Civic and Political Participation: An Application of the Theory of Planned Behaviour. J Community Appl Soc Psychol. 2006;61:452–61.
  2. Bond V, Nyblade L. The Importance of Addressing the Unfolding TB-HIV Stigma in High HIV Prevalence Settings. J Community Appl Soc Psychol [Internet]. 2006;16(January):452–461. Available from: http://www3.interscience.wiley.com/journal/5625/home

[1] Authors should be mindful not to over-emphasize TB treatment adherence because that is often viewed as an instrumental interest by persons with TB, who typically have a range of health and wellbeing concerns and prefer their well-being viewed holistically.

[2] Interventions which help people to value themselves generically may be more effective than ones that focus only on their self-concept as impacted by TB disease.