The Leprosy Mission's Presentations at ILC 2022 - Leprosy Mission International

Transmission

Disability

Discrimination

Repealing Discriminatory Laws - Are we there Yet?

Nikita Sarah, The Leprosy Mission Trust India

Day & Date: 11 November 2022 (Friday) Timing of Session: 9:00 AM to 10:00 AM Hall No: HICC 4 Title of Session: Social Aspects VII: Social Rehabilitation

Background

For long, India’s laws interpreted leprosy as an ‘incurable and virulent’ disease and allowed it to be a legitimate ground for divorce, separation, and other forms of social ostracisation and economic exclusion. While there was a pressing need for reforming archaic laws, there was hardly any momentum to bring this issue to the centre stage. In fact, awareness of legal discrimination was low among stakeholders, including NGOs, associations of persons affected by leprosy, and even policymakers,

Intervention

The initial days of intervention were fraught with challenges. There was no precedence on how to go about repealing laws that discriminate against persons affected by / cured of leprosy. It was only in 2014 that a first earnest attempt was made to collect evidence about discrimination, analyse them to build a case for their amendment, and build an understanding of processes that can help in repealing laws: parliamentary processes, strategic litigations, petitions, etc.

Over the last eight years, a series of complementing initiatives—research, collaboration, communication, and advocacy—were taken towards sensitising and mobilising legislative, judiciary, and civil society to galvanise efforts for repealing discriminatory laws. Timely support of Union Ministers, the Law Commission, the Supreme Court, Member of Parliament, legal policy think tank, lawyers, ILEP and other partner organisations at different crucial moments enabled us take concerted action on repealing discriminatory provisions in Central and state laws.

Between 2016 and 2020, the Centre and nine states repealed 22 discriminatory laws, which considered leprosy a valid reason for dissolution of marriage, prohibiting someone from attending schools and colleges, holding a responsible position in academic institutions, and getting nominated as a member of governing bodies.

The way forward

As opposed to 2014, we now have more partners to sustain and scale up our efforts. Capacity of different ILEP partners and NLEP consultants has been built over the years, so that they can continue liaising with respective state governments. While the list of yet-to-be-repealed laws is still long, we have managed to set the ball in motion.

We must continue to apprise the government of the challenges these laws pose to persons affected by leprosy. The task ahead is to partner with more relevant organisations, mobilise resources and direct efforts towards the repeal of discriminatory laws, and passage of a new comprehensive legislation—Elimination of Discrimination against Persons affected by Leprosy (EDPAL) Bill, 2015—which contains principles of non-discrimination and equal protection before law.

School Dropouts Among Leprosy Affected: Need for follow-up of cases, reasons, and counselling

Presenters: Sinphia Ajith and Raju M S

Date & Day: 11 November 2022 (Friday) Timing of Session: 11:30 AM - 12:30 PM Hall No: HICC 4 Session Name: Stigma & Discrimination - Session 2

Introduction:

Among the children who visit counselling centres after diagnosed of leprosy considerable number report to have discontinued their education due to social stigma and related problems. The counselling centre of urban metro tertiary care hospital of TLM at New Delhi have made efforts to analyse and document along with the process of counselling the reasons for discontinuation of school. The reasons found as per the perceptions of the dropouts are analysed in this paper.

Aims and Objective:

To estimate the approximate proportion of school dropouts among the leprosy affected children
To analyse the reasons as per the respondents perceptions for dropping out from the school.
To suggest possible NLEP interventions that can be incorporated for follow up of school defaulters and fulfil counselling needs.

Materials and Methods: The study was conducted at The Leprosy Mission community Hospital, Delhi. All the children about a total of 70 who visited counsellor over a period of 4 years from 2017-2020, have been studied

Results: From the total sample school drop-outs included 22 (31.4%) boys and 7 (10%) girls whereas 52(74.3%) boys and 18 (25.7%) girls visited counselling centre. Out of the total dropped out(29 children) 8 (27.6%) boys and 2 (6.9%) girls resumed their education after follow up and counselling but the rest on aggregate 65.5% of the dropouts not resumed because of various reasons viz. stigma and fear of discrimination even discriminated due to their deformity, reaction.

Limitation: This study was carried out based on the data of a single centre.

Conclusion: Treatment of the child cases is not effective unless we follow up them and provide regular counselling of the parents to make sure that every child continue schooling and prevent dropouts of both the genders.

Impact of COVID-19 on access to healthcare, livelihood and education among persons affected by leprosy

Introduction: COVID-19 pandemic overwhelmed the healthcare machinery and disrupted whatever access people affected by leprosy had to resources and support systems. Economic shutdown and strained healthcare systems further made it challenging for people affected by leprosy to continue treatment, be it receiving MDT or getting ulcer dressed or steroid dosage adjusted.

Objective: The study wanted to document how COVID-19 and economic shutdown affected access to preventive and rehabilitative treatment. The focus was on understanding problems at the grassroots, on both demand and supply side of healthcare services, particularly for people affected by leprosy. The study aimed at generating evidence to advocate for disaster-inclusive health policies and programmes.

Methodology: The team conducted telephonic and face-to-face interviews with medical superintendents, public health consultants, residents of leprosy colonies, ASHA workers and children/youth affected by leprosy and other disabilities. They looked through peer-reviewed research papers, media reports and conducted an online survey of about 500 students and young professionals, with most of them having experienced leprosy or disability.

Results: Existing systems for prevention and management of leprosy were disrupted due to singular focus on reigning in COVID-19. In some cases, delayed treatment led to disease progression, with disability setting in. Concentration of physiotherapy and other disability management services in district hospitals, coupled with reduced or no income, prevented people from accessing these services. Reduced income put disproportionate burden on persons with disabilities and their households, which already bear extra cost (accessible housing & equipment, assistive devices, etc.), forcing them to depend on charity and relief aid.

Conclusion: Persons with leprosy and other disabilities can access preventative and rehabilitative care only when the points of care are decentralised, tele health is leveraged and staff capacity is built for providing advanced leprosy and disability management services.

Can the health outcomes of self-help programmes be sustained? A scoping review

Introduction

Considerable resources are spent in LMICs on implementation of community-based programmes for health improvements, including establishment of self-help groups (SHGs). SHGs are also frequently employed in the empowerment of people affected by leprosy. However, sustainability of such programmes is often not taken into consideration when planning. An evaluation of the sustainability of these programmes is critical in determining how effective programmes are in achieving their goals over the longer term and whether activities continue once the funding ends.

Objectives

To i) explore/establish the evidence on sustainability of self-help programmes; ii) explore/understand the implications of our findings for leprosy self-help programmes.

Methods

We systematically searched PUBMED, Web of Science, EconLit and Google Scholar for peer reviewed studies published to January 2022. Studies were included if they evaluated a self-help group/programme, from LMICs, for people with a health issue, and/or health providers and program managers who have developed or managed self-help interventions.

Results

The initial search identified 6116 articles, of which 637 were duplicates. After screening titles, 71 article abstracts were screened. Fifteen articles met our inclusion criteria following full-text review. Studies were conducted in India (n=11), Africa (n=3) and Nepal (n=1). Ten studies were focused on SHGs for women. Overall, studies reported better outcomes for individuals that participated in SHGs compared to similar non-participants. Sustainability of SHGs was influenced by factors such as: trust, social environment, economic support and security, leadership capacity and socioeconomic status (moderately poor more likely to continue than poorest).

Discussion

Studies provided limited description of interventions; detailed descriptions will help understand full implications. Most SHG programmes focused on health outcomes resulting from implementation of SHGs rather than longer term sustainability. Also, majority of the studies reported results from programmes that had evolved from an initial SHG programme without discussing approaches to sustainability, if any.

Health economic evaluation of self-help group interventions in LMICs: a literature review

Jessica Ochalek, MSc, MPH1, Naomi Gibbs, PhD1, Rita Faria, MSc1, Joydeepa Darlong, MBBS, MD2, Karthikeyan Govindasamy, BOT, MPH2, Anthony Meka, MBBS, MPH3, Dilip Shrestha, MSc4, Indra Bahadur Napit, MD4, Mark Sculpher, PhD1

1University of York

2 The Leprosy Mission Trust India

3 Leprosy and TB Relief Association (DAHW), Nigeria

4 The Leprosy Mission Nepal

Introduction

Self-help groups are voluntary mutual assistance groups of individuals with a common characteristic, such as leprosy or impoverishment. They exist to meet a collective objective such as the improvement of health or promotion of wellbeing, and may be considered for provision through publicly funded healthcare. Such groups may confer benefits and/or costs beyond the healthcare sector.

Objectives

Our objective is to identify and critically appraise the methods used to establish the value of self-help interventions that seek to improve health in LMICs. We define value as the benefits gained net of the benefits forgone from funding it. We consider whether the methods employed can meaningfully inform decisions by Ministries of Health and other sectors, including donors, around whether to fund such interventions.

Material and methods

We systematically searched MEDLINE, Embase, EconLit and Global Index Medicus for peer reviewed studies published between 2014 and 2020. Papers were included if they evaluated a self-help intervention, were based in an LMIC, included at least one health outcome and intervention costs and reported the methods used. We completed a narrative synthesis of the papers with a focus on how papers account for intersectoral effects and provide information to inform decisions.

Results

Nine studies met our inclusion criteria. There was heterogeneity in the extent to which (or whether) all of the relevant costs, benefits and potential disbenefits and opportunity costs were included, and how these were reported.

Limitations

Estimation of the value of self-help groups without potential health benefits is beyond the scope of this review, and is an area for future research.

Conclusion

Informing decisions around funding self-help groups in a way that ensures that their value is accounted for requires collection and reporting of particular types of data. Funders can make better informed decisions when evidence is organised in a cross-sectoral framework.

Sustainability of community-based self-help programmes in the context of leprosy and the work of leprosy missions.

Introduction:

To break the vicious cycle of poverty and poor health outcomes associated with leprosy, self-help groups (SHG) have been implemented, based in communities and involving the formation of groups of people who can provide mutual support and form saving syndicates.

Objectives:

Our objective is to determine the extent to which SHG programme activities have continued in the time beyond the funding period and record evidence of sustained benefits, at four study sites across three leprosy endemic countries.

Methods:

We will retrieve and analyse any project documents. This will be followed by semi-structured interviews with people involved in delivery of the self-help intervention, potential beneficiaries and people in the wider environment who would have been familiar with the programme. Interviews aim to identify barriers and facilitators to success and sustainability. Data will be analysed thematically and compared across groups and countries.

Impact:

Comparative analysis of data from across the four geographical areas will result in a comprehensive investigation of the concept of sustainability SHG programmes for people with leprosy, disability, other conditions causing ulcers or marginalised, once funding has ceased.

Our findings will have implications for a wider population as people affected by leprosy are in the minority in the self-help groups in all of our participating countries.

Limitations:

There is a risk of bias and conflict of interest as interviews will be conducted by individuals from the implementation organizations. We also expect recall bias as participants will be asked to recall events from their past. We expect that our triangulation of methods and data sources will somewhat mitigate the bias.

Conclusions:

While there is literature on the existence of SHGs and their effectiveness during the funded periods, little is known about the sustainability of these interventions. Our study will help answer this knowledge gap.