Building resilience in the face of discrimination

In 2018 ILEP gained funding from the Leprosy Research Initiative (LRI) for a study entitled ‘Promoting inclusion where it matters most: Building resilience in individuals and families’. Though leprosy and leprosy-related stigma or discrimination can have a major impact on psychosocial wellbeing, there is also evidence that persons affected by leprosy can overcome experiences of discrimination and exclusion, and in doing so they demonstrate numerous dimensions of resilience.  So the study investigated whether efforts to strengthen individual and family resilience would enable people to better address stigma and discrimination.

Concept and design

The study was initiated and led by Zoica Bakirtzief da Silva Pereira (currently a member of the ILEP Advisory Panel), Anna van’t Noordende (now with NLR) and Pim Kuipers (former ILEP staff member). They designed a ten-week resilience development programme, along with a manual, and piloted it in collaboration with staff from ILEP members in two quite different contexts in India. These were an urban slum in Hyderabad, in association with ILEP member Fontilles, and a rural tribal area in Odisha, in association with ILEP member Lepra.

The programme was undertaken in family settings, and the participants were people with personal experience of leprosy and their family members. To make the concept of resilience more meaningful to the participants, bamboo was chosen as an emblem of the programme, with the catch-phrase: ‘being strong and bouncing back like the bamboo in a storm’. The content of the programme covered four main themes: strong roots of the bamboo plant (knowledge), strong trunk (thoughts and behaviour, positive self-view), strong branches and leaves (beliefs, faith and knowledge of rights), and strong soil (relationships within and beyond the family, and social support).

Results

The results of the study were published in April 2021. The ten-week course was well-received by the individuals and families. The ILEP member staff involved in the programme were very supportive: for them, it seems to have been a valuable entry point into a deeper understanding of psychosocial issues in leprosy. The effects of the programme on the two communities, measured through resilience and quality of life questionnaires, were markedly different. The rural community in Odisha demonstrated significant gains in resilience, whereas the urban slum community in Hyderabad did not. Both communities had markedly higher quality of life scores after the programme.

The full report includes some very thoughtful analysis of why the results were different. We recommend a close reading of that analysis. It is a useful reminder of the way in which events and circumstances outside of a programme or intervention can have a dramatic effect on results.

Next steps

The authors conclude that this 10-week family-based intervention is feasible and has the potential to improve resilience and quality of life. There are fruitful subjects for further research coming out of the study – for example, the inter-relationship between resilience and religious belief. They note that the 10-week programme is one of the first interventions designed to strengthen psychosocial resilience of persons affected by NTDs such as leprosy in a developing country context. They recommend a larger-scale trial to determine the effectiveness and long-term sustainability of the intervention.

ILEP statement of commitment to the participation of persons affected by leprosy

This statement is also available in French, Spanish and Portuguese.

BACKGROUND

The involvement of communities and persons affected is not a new concept in primary health care and disease programs. Human rights-based approaches to NTDs, including leprosy, emphasise that any interventions should be based on the principles of participation, non-discrimination and accountability[1]. WHO has issued specific Guidelines for strengthening participation of persons affected by leprosy in leprosy services[2]. However, the active participation of persons affected by leprosy is not always a reality.

THE EASI STRATEGY 

Engaging persons affected by leprosy is essential to the success of leprosy programs. Having experienced the disease, disability and associated discrimination, they have a unique voice and perspective, they bring passion to the work and take the programs closer to the communities they are designed to benefit. ILEP and its Members adopt the EASI strategy to ensure that persons affected by leprosy have the space and the support for meaningful and effective participation.

ILEP COMMITMENT  

In relation to the EASI strategy, and within their sphere of influence, ILEP and its Member associations commit to work towards the following outcomes:

• Policy-making: Persons affected by leprosy are supported to participate in the development, monitoring and evaluation of leprosy-related policies, guidelines and preferred practices at all levels.
• Programs: Persons affected by leprosy systematically participate in all stages of leprosy programs from planning, to implementation, monitoring and evaluation. Their knowledge, skills, experience and connections are valued in these roles.
• Leadership, networking and sharing: Persons affected by leprosy are supported to take on leadership roles in self-care groups, support groups and other relevant local, national and international networks; to seek resources and build local capacity; to encourage participation of new members; and to share their experience with others.
• Advocacy: Persons affected by leprosy actively participate in advocacy for participation of persons affected, human rights, the removal of all discriminatory laws, regulations and practices and universal access to quality services that are fully integrated into strengthened local health systems;
• Public representation: Persons affected by leprosy are supported to actively participate at local, regional and global fora and to become spokespersons in leprosy and related campaigns or speakers at public events.
• Research: Persons affected by leprosy are supported to participate in the planning and execution of leprosy-related research
• Gender: Specific attention is paid to ensuring equal participation by women affected by leprosy in each of these actions

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[1] A human rights-based approach to neglected tropical diseases. World Health Organisation, 2010 http://www.who.int/neglected_diseases/Human_rights_approach_to_NTD_Eng.pdf.

[2] https://apps.who.int/iris/bitstream/handle/10665/205169/B4726.pdf?sequence=1&isAllowed=y

WHO Global leprosy strategy 2021–2030

The new WHO global leprosy strategy, entitled ‘Towards Zero Leprosy’, was released on 15^th April. This is one of the disease-specific strategies underpinning the WHO Road map for NTDs 2021–2030. The strategy presents the basic direction, goals, challenges and strategic pillars at a global level. National NTD and leprosy programmes are urged to adopt it and to adapt its strategic pillars to their country context. This is a crucial document for ILEP and its member associations, and for all partners working in leprosy.

Vision, goal and targets

‘Towards Zero Leprosy’ is defined in the strategy’s long-term vision as zero infection and disease, zero disability, zero stigma and discrimination. The medium-term goal is the elimination of leprosy, defined as interruption of transmission, and a WHO working group has been developing definitions around this during recent months. It is not expected that this goal will be achieved globally by 2030, though a further 86 countries are expected to do so. The four high-level 2030 targets are:

• 120 countries reporting zero new autochthonous cases.
• 70% reduction in annual number of new cases detected.
• 90% reduction in rate per million population of new cases with grade-2 disability.
• 90% reduction in rate per million children of new child cases with leprosy.

These are set out in more detail in the table below.

Strategic pillars

To achieve these targets, the strategy incorporates four strategic pillars, each with a number of key components and a set of relevant indicators. The strategic pillars are:

1. Implement integrated, country-owned zero leprosy roadmaps in all endemic countries.
2. Scale up leprosy prevention alongside integrated active case detection.
3. Manage leprosy and its complications and prevent new disability.
4. Combat stigma and ensure human rights are respected.

The first, third and fourth headings are broadly similar to the three pillars of the previous strategy, though there is new material in each case. For example, Pillar 1 now has recommendations to form national partnerships for zero leprosy and multi-stakeholder zero leprosy roadmaps, a reflection of the emergence of the Global Partnership for Zero Leprosy. It also has much stronger reference to data quality, and now includes the monitoring of adverse drug reactions. Pillar 3 includes a section about mental wellbeing and counselling, on which the previous strategy was silent, along with more specific material around self-care. Pillar 4 gives emphasis to the Principles and Guidelines for elimination of discrimination against persons affected by leprosy and their family members, with the full text of the Principles and Guidelines in an appendix, and explains the importance of including leprosy into national human rights policy frameworks.

Pillar 2 is new in that, alongside ongoing active case detection, it adds the scaling up of leprosy prevention in line with the recommendation in the 2018 WHO Guidelines for the diagnosis, treatment and prevention of leprosy. It also refers to the potential of existing or new vaccines, which were not part of the picture when the previous strategy was written.

Aside from what is new in the strategic pillars, there are distinct differences in some of the language, which is consistent with the change in focus in the WHO Road map for NTDs. For example, although the previous strategy referred to the mainstreaming of leprosy within primary and secondary healthcare systems, the new strategy refers constantly to leprosy services being integrated with other health services and, particularly, with other skin NTDs.

The strategy also includes a set of sixteen research priorities for this strategic period, and emphasises that global and national investment in research are essential to achieving zero leprosy.

Adoption and adaptation of the strategy

It is likely that ILEP members working closely with national leprosy control programmes will be asked to advise and support Ministries of Health on the implications of the new strategy for national leprosy and NTD programmes. Five years ago, some countries simply adopted the strategic targets and pillars of the previous strategy as their own country strategy, but the WHO Global Leprosy Programme advises against that. It points out that the 2030 targets in the strategy are global targets. Countries need to set targets that are relevant to their own leprosy situation and baseline data, in order to contribute to the achievement of global targets.

The strategic pillars have been written so as to be relevant to both higher-endemic and lower-endemic settings. However, countries (and ILEP members that are advising them) should closely examine the strategic pillars and the detailed components and content that underlies the pillars, and determine what is relevant for progress towards the country’s own leprosy and NTD targets.

The ILEP Office intends to host online workshops to give ILEP member staff the opportunity to ‘unpack’ the NTD Roadmap and the Global Leprosy Strategy and explore their implications in greater depth.

ILEP’s response to the Global Leprosy Strategy

ILEP has appreciated the opportunities for input into the strategy development process and welcomes the close integration between the NTD Road map and the Global Leprosy Strategy. ILEP also applauds the improvements over the previous strategy. The 2021-2030 strategy is more comprehensive, and ILEP members have appreciated the increased emphasis on integration, the focus on country ownership for sustainability, the inclusion of mental wellbeing, and the repeated references to involvement of persons affected by leprosy. However, no strategy is perfect. Some ILEP members would have liked to see a stronger focus on gender equity, a more thorough research section, and clearer references to logistics including MDT supply, given the supply issues over the past twelve months. There is also concern among some ILEP members over the redefined ‘elimination’ goal and the accuracy of the baseline numerical data.