Figures
Abstract
Background
Healing in leprosy has long been synonymous with bacteriological cure, often overlooking persistent disability, stigma, and psychosocial consequences. Insights from other chronic diseases may inform a broader understanding of healing. recovery.
Objectives
To map how healing is defined and experienced in leprosy, tuberculosis, HIV/AIDS, diabetes mellitus, and schizophrenia, and to identify conceptual and practical lessons relevant for post-cure leprosy care.
Methods
A scoping review was conducted following the Arksey and O’Malley framework and reported in accordance with PRISMA-ScR guidelines. PubMed and PsycINFO were searched for qualitative studies (January 2012–December 2022) in English language from low- and middle-income countries. Eligible studies explored definitions, determinants, or models of healing in the five conditions. Data were charted and thematically synthesized across physical, psychological, socioeconomic, socio-relational, and spiritual domains following the Joanna Briggs approach.
Results
Eighty-five studies met inclusion criteria (leprosy = 20, TB = 9, diabetes = 8, HIV = 36, schizophrenia = 12). Healing was most often defined as adaptation, resilience, or reintegration rather than cure. Across diseases, five interrelated dimensions—physical, psychological, socioeconomic, socio-relational, and spiritual—shaped recovery. Compared to other chronic conditions, leprosy literature remained largely biomedical, with limited exploration of psychosocial and spiritual healing.
Author summary
Healing from leprosy has been defined by bacteriological cure, yet many people continue to live with the effects of disability, stigma, and social exclusion long after treatment ends. This scoping review explored how healing is conceptualized across five chronic conditions—leprosy, tuberculosis, HIV/AIDS, diabetes mellitus, and schizophrenia—to draw lessons that can guide holistic leprosy care. By analysing 85 studies from low- and middle-income countries, we found that recovery is not limited to physical health but includes psychological, social, economic, and spiritual well-being. Other chronic diseases have progressively integrated counselling, peer support, and livelihood interventions into their care models, while leprosy programs remain largely biomedical. We propose a 5D Healing Framework—covering physical, psychological, socio-relational, socioeconomic, and spiritual dimensions—to help design comprehensive, person-centred post-cure leprosy services. This approach emphasizes that achieving “zero leprosy” must include restoring dignity, belonging, and purpose for persons affected, not merely eliminating infection.
Citation: Darlong J, Kim J, Goswami S, Tyagi C, Karthikeyan G, Charles MVS, et al. (2026) Understanding healing: A comparative analysis in chronic diseases with leprosy—A scoping review. PLoS Negl Trop Dis 20(3): e0013748. https://doi.org/10.1371/journal.pntd.0013748
Editor: Udhishtran Arudchelvam, University of Colombo Faculty of Medicine, SRI LANKA
Received: November 11, 2025; Accepted: February 9, 2026; Published: March 2, 2026
Copyright: © 2026 Darlong et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All data underlying the findings of this study are fully available within the paper and its Supporting information files. The review did not generate or analyse any primary data; all data were extracted from published studies identified through systematic searches of PubMed and PsycINFO. Detailed characteristics of included studies, search strategies, and synthesis tables are provided in the Supporting information.
Funding: This research received funding from the leprosy research Initiative Grant number FP23/100019 to JD. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Introduction
Global context of leprosy: burden, disability, stigma, and gaps after MDT
Leprosy is a complex disease affecting populations in low- and middle-income countries across Asia, Africa, and Latin America [1]. It is associated with physical disability and poor psychological outcomes [2] and remains a major global health problem in the developing world [3]. While multidrug therapy (MDT) effectively cures the infection, statistics often fail to capture the suffering, disability, and dysfunction that remain after treatment completion [4]. The disease damages peripheral nerves [5], leaving many with sensory loss and muscle weakness in the hands and feet, predisposing them to injuries from daily activities. These presentations progress into chronic ulcers, loss of digits, and disfigurement—visible signs of leprosy that reinforce stigma. Studies confirm that persons affected remain at risk of developing disabilities even after being released from treatment (RFT) [4,5].
Beyond physical deformities, immune-mediated complications persist. Type 1 reactions with neuropathy may occur years after MDT completion, while type 2 reactions can be chronic, lasting a median of five years and sometimes delayed up to 16 years [6,7]. Since onset often occurs in adolescence or early adulthood, the accumulation of disability over a lifetime is substantial. Individuals continue to face stigma, poor mental health, reduced quality of life, limited social participation, and economic challenges including loss of employment [8,9].
Rationale: why healing beyond cure matters
Despite these long-term consequences, individuals are declared ‘cured’ once MDT is completed, in line with the current biomedical definition of cure. However, for them, cure extends beyond bacteriological clearance to encompass the ability to return to pre disease conditions, daily activities, work, family, and social life. Current treatment pathways do not have mechanisms to address these, resulting in many who do not feel fully healed and are left stranded in their journey toward restoration [10,11] Recent studies emphasize the importance of post-cure care and have begun developing holistic care packages to support this broader concept of healing [12,13].
Justification: lessons from chronic communicable and non-communicable diseases
Healing in leprosy has not been systematically studied however other chronic diseases like schizophrenia, diabetes, TB and HIV/AIDs may provide useful insights and parallels. Schizophrenia though dissimilar in etiology, shares with leprosy the chronic suffering, stigmatized socially that demands to look beyond the concept of cure and what it entails to manage and cope with the disease [14,15]. Similarly, Diabetes mellitus entails lifelong management of complications and stigma, including difficulties in relationships and employment that resonates with leprosy [16]. Communicable diseases like Tuberculosis and HIV/AIDS share features of stigma and long-term effects [17,18].
There is a recognition of life beyond treatment for both conditions wherein person-centred care models that have been developed by the WHO have shown the positive impact for TB survivors [19], while people living with HIV have played an important role in highlighting biases of the community and health services. Similarly, WHO guidance for HIV emphasizes differentiated, person-centred service delivery models that integrate psychosocial support and community engagement [19], while recovery-oriented approaches in mental health care promoted through WHO’s mhGAP highlight social inclusion and functional recovery [20,21]. WHO frameworks on disability-inclusive development further reinforce the need to address long-term functioning, participation, and dignity beyond disease-specific treatment [22]. The voices of Persons living with HIV/AIDs have been vocal and have played an important role in reshaping attitudes of the public and within the care providers in the health services [23].Despite a broad understanding of leprosy and its management, there remains a gap in literature on what healing means for a person affected by the disease beyond bacteriological cure. While treatment completion and release from therapy (RFT) mark clinical milestones, they do not necessarily signify the end of suffering or restoration of well-being. This study, therefore, seeks to explore the broader dimensions of healing in leprosy and highlight the importance of comprehensive post-RFT care that addresses the continuing needs of persons affected.
Aim and objectives of the review
This scoping review aimed to explore what healing means in the above-mentioned chronic diseases. In addition, the review sought to identify existing programs, service delivery approaches, and policy-relevant interventions addressing chronic suffering, stigma, and long-term recovery in low- and middle-income countries that could inform post-cure leprosym care. It also examined existing literature on leprosy to identify current understanding and gaps in conceptualizing healing. The lessons drawn will help inform the design of comprehensive care packages that support persons affected by leprosy in achieving healing beyond cure from the disease.
Methods
Framework and reporting
This scoping review followed the methodological framework proposed by Arksey and O’Malley (2005), further refined by the Joanna Briggs Institute (JBI), and is reported according to the PRISMA-ScR 2020 checklist [24]. The protocol was not registered due to its exploratory scoping nature.
Operationally, the focus was on mapping how healing is conceptualized across selected chronic diseases and on identifying documented models, programs, and approaches supporting multidimensional healing that may inform healing and recovery in leprosy care.
Eligibility criteria
Inclusion: Peer-reviewed qualitative studies exploring the meaning, experience, or process of healing or recovery in adults with one of the target diseases, published between January 2012 and December 2022, in English, and from low- and lower-middle-income countries.
Exclusion: Case reports, commentaries, editorials, paediatric studies, and studies from high-income settings. Paediatric studies were excluded because this review focused on adult conceptualizations of healing related to identity reconstruction, livelihood, social participation, and meaning-making following chronic illness. Healing processes in children are mediated through caregivers, schooling systems, and developmental stages, and therefore require a distinct analytical framework beyond the scope of this review.
Information sources and search strategy
Two databases—PubMed and PsycINFO—were searched to capture both biomedical and psychosocial perspectives. Search terms combined MeSH and free-text terms for healing and related constructs (“recovery,” “aftercare,” “well-being,” “social adjustment,” etc.) with disease-specific terms. Boolean operators “AND” and “OR” were used.
Selection of sources of evidence
All retrieved citations were imported into Rayyan for de-duplication and screening. Two reviewers independently screened titles and abstracts for relevance. Full texts were then assessed against eligibility criteria. Disagreements were resolved by consensus. The study selection process is presented in a PRISMA-ScR flow diagram (Fig 1).
Data charting process
A standardized data-charting template in Microsoft Excel captured the following information:
- Author(s), year, and country
- Study design and setting
- Disease focus
- Definition or description of healing
- Descriptions of programs, interventions, service delivery models, or policy-relevant approaches related to healing and recovery
- Key findings and recommendations
The template was pilot-tested and refined. Data extraction was conducted by one reviewer and verified by a second reviewer.
Synthesis of results
Consistent with scoping review methodology, no quality appraisal was undertaken. Extracted data were summarized descriptively, and a narrative thematic synthesis identified recurring domains of healing (physical, psychological, socioeconomic, socio-relational, and spiritual). Cross-cutting insights were compared across diseases to develop an integrated conceptual framework.
Results
Brief overview of included studies
In total, 3752 records were identified from two databases (PubMed and PsycINFO). After removing 394 duplicates, 3358 titles and abstracts were screened, and 3172 were excluded as irrelevant. Full texts of 177 articles were assessed for eligibility; 92 were excluded for reasons detailed in the figure. A total of 85 studies were included in the review (leprosy = 20, tuberculosis = 9, diabetes = 8, HIV = 36, schizophrenia = 12).
Table 1 summarizes the distribution of the 85 included studies across five chronic conditions and highlights regional representation and dominant methodological approaches. Detailed information on all 85 studies is presented in S1 Table.
Lessons from chronic diseases
Tuberculosis.
In tuberculosis, nine studies were identified, primarily from Asia, including three from India, with additional contributions from Ghana. While no one explicitly defined healing or recovery, the literature described a broad range of experiences shaping wellbeing during and after treatment. Physical aspects included early reporting of symptoms, difficulties with treatment side effects such as hearing loss, appetite changes and reduced mobility, and challenges with adherence and dietary restrictions. Socially, stigma emerged as a major theme, contributing to depression, loss of self-worth, and social withdrawal, while family support, workplace acceptance, and positive interactions with healthcare providers were described as protective. Psychological distress was commonly reported, often continuing beyond cure, though encouragement and reassurance from others were highlighted as important for adherence and recovery. Several studies also pointed to limited knowledge and misperceptions—such as reluctance to use the word “TB,” doubts about curability, and reliance on herbal or spiritual remedies—while counselling and improved patient–provider communication were seen as critical for overcoming these barriers. Economic consequences were substantial, with income loss, debt, and asset pledging commonly reported, and socioeconomic status shown to correlate with quality of life. Finally, spiritual resources were invoked in coping, with reliance on God’s power described as supporting individuals through the uncertainties of illness and treatment. Support for these needs was primarily accessed through public TB programs, supplemented by NGO-led counselling initiatives and, in some settings, government nutritional and cash support schemes.
Diabetes mellitus.
From 316 identified records, eight qualitative studies were included, most of which focused on type 2 diabetes, with one involving participants with type 1 diabetes. These studies explored lived experiences through interviews and focus groups, examining coping strategies, cultural influences, and social support in self-management. Healing was not explicitly defined, but was described implicitly through practices that enabled coping, adaptation, and resilience.
Self-management emerged as a central theme, though it was often shaped by cultural and contextual factors. In some settings, patients initially did not view self-management as their own responsibility, while others emphasized the importance of culturally tailored education and local-language training to strengthen disease control. Religious faith was another prominent coping mechanism. Prayer, fasting, and acceptance of diabetes as part of “God’s plan” were seen not only as sources of strength and resilience, but also as pathways to healing and even glycaemic control [25].
Social support played a critical role in navigating the disease. Peer groups reduced isolation and fostered shared learning, while families provided emotional, financial, and practical assistance. Yet stigma and reluctance to disclose diabetes limited open discussion, contributing to hidden burdens. Cultural practices, financial constraints, and food insecurity further complicated management, with some patients turning to traditional remedies when biomedical options were inaccessible.
Across studies, the psychological impact of diabetes was clear, with participants reporting stress, frustration, and depression linked to economic and social pressures. Healing in this context was understood not as a cure, but as the ongoing ability to adapt, endure, and find meaning within the realities of chronic illness.
Schizophrenia.
Twelve studies were included, employing qualitative, mixed-method, and scoping designs with sample sizes ranging from 9 to 282 participants. Healing was framed less as cure and more as recovery, described as a multidimensional and personal process. Key elements included adherence to or choice around medication, developing resilience, maintaining hope, and achieving psychological stability, Support systems particularly from family, community-based rehabilitation programs, and peer groups—was central to fostering belonging and reducing stigma. Employment and livelihood opportunities enhanced self-esteem and integration, while poverty and social exclusion were barriers. Spirituality and prayer were described as sources of finding meaning in life, coping, and comfort. Overall, healing in schizophrenia was defined as a continuum of recovery, combining clinical stability, psychological integration, spiritual strength, and social inclusion.
HIV.
Thirty-five qualitative studies were included, most from Africa and Asia. Healing in HIV was not defined as cure but as a process of acceptance, adaptation, and sustaining quality of life. Clinically, barriers and facilitators to anti-retroviral therapy (ART) adherence, including provider relationships, mobility, and knowledge were significant. Socioeconomic factors, particularly family and peer support, economic stability, and participation in community networks, strongly influenced healing, while poverty and stigma hindered it. Mental health challenges such as shame, isolation, and fear of disclosure were recurrent, with acceptance of HIV status, hope, and purpose identified as key turning points. Quality of life was defined as living a “normal life,” being socially accepted, and engaging in family and community roles. Spirituality was ambivalent: traditional beliefs could obstruct treatment, but faith and prayer provided coping, meaning, and motivation when combined with strong social support. Overall, healing in HIV was understood as acceptance, resilience, and integration into social and spiritual life while adhering to long-term treatment and support was commonly accessed through public ART programs, community-based peer networks of people living with HIV, NGO-led counselling services, and faith-based organizations
Leprosy.
Thirty-eight studies, largely qualitative, examined healing among people affected by leprosy in low- and middle-income countries. Healing encompassed physical, psychological, and social recovery. Self-care education and peer support improved quality of life and reduced disability risks, but misconceptions, high turnover of medical professionals, and limited counselling skills often left patients insecure. Stigma and discrimination resulted in shame, anxiety, and depression, while peer bonding and counselling enabled resilience. Socioeconomic challenges—especially unemployment, financial insecurity, and marital rejection of women—undermined self-esteem, though microcredit, family support, and community acceptance promoted reintegration.
Interventions highlighted in the literature included early detection, health education, counselling, self-care groups, and community sensitization. Healing was thus framed as restoring dignity and reducing stigma but remained narrowly tied to physical cure and functional recovery.
In contrast, the understanding of healing in tuberculosis, diabetes, HIV, and schizophrenia has progressively expanded to integrate psychological, social, and existential dimensions. Compared to these, leprosy literature remains largely anchored to biomedical outcomes, with limited attention to long-term psychological, socio-relational, and spiritual recovery. This support was largely delivered through vertical leprosy programs and NGO-led services, with limited integration into mainstream health systems, social protection schemes, or mental health services.
Table 2 illustrates these contrasts and exposes the gaps of leprosy recovery and how the proposed five-pillar framework addresses them.
Discussion
This scoping review mapped and synthesized evidence on how healing is understood across five chronic conditions—leprosy, tuberculosis, diabetes, HIV, and schizophrenia. The findings highlight that healing is conceptualized as a multidimensional process encompassing physical, psychological, socioeconomic, socio-relational, and spiritual domains. By comparing across diseases, this review identifies lessons that can inform holistic post-cure leprosy care.
We propose describing this as the 5D Healing Framework (Fig 2), a biological-psychological-social–economic–spiritual model.
Physical domain.
In all chronic conditions reviewed, the physical domain remains foundational to recovery, yet the emphasis and strategies differ considerably. In tuberculosis, healing is strongly anchored in achieving microbiological cure through strict treatment adherence and consistently highlight that physician–patient communication plays a critical role in adherence and long-term health outcomes [26]. In HIV/AIDS, biomedical management is central, but layered with self-care routines such as ART adherence, symptom monitoring, and nutritional support. In diabetes, the physical aspect of healing extends beyond glycemic control to include the management of long-term complications—foot care, retinopathy screening, and lifestyle adjustments—requiring patient education and continuous self-management. In schizophrenia, while the biomedical model emphasizes medication adherence, physical healing is increasingly linked to the management of medication side effects and promotion of healthy routines such as diet, sleep, and exercise, which support overall recovery.
By contrast, in leprosy, the biomedical focus has historically been narrower, centered on multidrug therapy (MDT) completion and prevention of disability. However,physical limitations persist well beyond treatment completion, with residual nerve damage and impairments impacting daily life [27,28]. Studies in Ethiopia further highlight that integrated approaches to limb care—such as those developed for lymphatic filariasis and podoconiosis —could be beneficial for leprosy as well, offering shared strategies for wound care, footwear provision, and physiotherapy [12]. In practice, physical care for leprosy-related complications in low- and middle-income countries is accessed primarily through public health facilities for MDT and reactions, and through NGO-supported referral centres for disability care, ulcer management, and physiotherapy. Community-based rehabilitation programs and integrated limb-care initiatives, often supported by non-governmental organizations, play a crucial role in bridging gaps in long-term physical support, particularly after release from treatment [29,30].
A key transferable lesson from TB, HIV, and diabetes is the emphasis on patient engagement in long-term physical self-care. For leprosy, this implies moving beyond clinic-based disability prevention to models that empower patients in self-care of neuropathic feet, wound management, and prevention of secondary complications. From schizophrenia and other chronic conditions, another relevant lesson is the integration of healthy lifestyle support—dietary advice, physical activity, and sleep hygiene—which are rarely addressed in leprosy but could reduce vulnerability to complications, particularly in patients on long-term corticosteroids.
Taken together, while the physical domain remains central across chronic illnesses, the framing differs. Leprosy can benefit from adopting a more holistic physical care model—one that combines MDT completion with structured, patient-led self-care, integrated chronic complication management of reactions and impairment, lifestyle support and communication strategies that build trust and adherence.
Psychological dimension.
The psychological challenges of chronic diseases often extend far beyond the clinical course, shaping identity, relationships, and opportunities for social participation. Lessons from other long-term conditions illustrate how structured psychological support can improve adherence, recovery, and overall wellbeing.
In case of HIV, integrated counselling has become a cornerstone of care. Trained counsellors provide health education at diagnosis, during treatment initiation, and at points of crisis, ensuring patients are supported through the uncertainties and stigma of a life-altering diagnosis. Peer-support networks—often described as “treatment buddies”—play an equally important role by normalizing the illness experience, sharing coping strategies, and offering sustained encouragement for adherence.
In tuberculosis, psychosocial interventions have been crucial in addressing depression and the social isolation caused by prolonged treatment. Counselling and psychosocial support programs not only improve adherence but also reduce loss-to-follow-up. These lessons demonstrate that emotional support and treatment completion are deeply intertwined. Schizophrenia care emphasizes recovery-oriented approaches where psychosocial interventions, including peer support groups [31], vocational rehabilitation [32], and psychoeducation for families [33], counterbalance the disabling impact of persistent symptoms. Community-based mental health teams reinforce the idea that illness management must extend beyond pharmacological control to restoring social functioning and dignity.
Diabetes programs highlight another transferable lesson: By focusing on collaborative goal-setting and empowering individuals, such approaches help patients regain agency in managing a demanding, long-term condition.
For leprosy, where stigma and social exclusion remain persistent barriers, these experiences offer clear directions for adaptation. Structured counselling at key stages—diagnosis, treatment initiation, and during episodes of reaction—could normalize the disease experience and pre-empt psychological distress. Such support, where available, is most often delivered through NGO-led counselling services, peer-support groups, and community outreach workers, rather than being embedded within routine public leprosy services [34–36]. Access remains uneven, with mental health care frequently dependent on project-based initiatives rather than integrated health system provision [37,38].
Peer-support groups modelled on HIV networks may provide safe spaces for shared learning [37–39] and reduce isolation, while involving family members through psychoeducation could help rebuild trust and support systems strained by stigma. Integrating mental health screening into routine leprosy services, alongside basic counselling skills for frontline workers, could ensure that emotional wellbeing is treated as integral to clinical care rather than an afterthought. Ultimately, a psychosocial care package for leprosy must aim not only to reduce distress but to enable participation, restore dignity, and foster resilience within both individuals and communities.
Socioeconomic dimension.
Experiences from other chronic conditions show that socioeconomic stability is central to sustained health outcomes. In HIV programs, the introduction of cash transfer schemes in Sub-Saharan Africa (e.g., Kenya’s Cash Transfer for Orphans and Vulnerable Children) and livelihood support programs improved adherence and reduced catastrophic costs. Tuberculosis care in India and other high-burden countries has integrated nutrition support packages [40]—such as the Nikshay Poshan Yojana, which provides monthly cash assistance to patients during treatment—and pilot schemes for wage compensation have demonstrated positive effects on treatment completion [41,42]. In diabetes, many countries have expanded insurance coverage for essential medications and launched workplace wellness initiatives, acknowledging the dual burden of treatment costs and productivity loss. In schizophrenia, structured vocational rehabilitation programs and supported employment models—like the Individual Placement and Support (IPS) approach—have enabled social reintegration, reduced dependency, and enhanced quality of life.
For leprosy, these lessons argue for a shift from the historically charity-based rehabilitation model to a rights-based socio-economic empowerment approach. In most endemic settings, access to such support remains mediated by non-governmental organizations, with limited systematic inclusion of persons affected by leprosy in government social protection and livelihood schemes. While microfinance initiatives, cooperative enterprises, and self-help groups are already well established in leprosy work, they have often remained NGO-driven and small-scale. The challenge now is to move beyond these stand-alone models toward systemic inclusion in mainstream livelihood and social protection frameworks. Advocacy should focus on ensuring that persons affected by leprosy are fully included in government-led schemes such as disability pensions, job reservations, and national livelihood missions. At the same time, lessons from HIV and mental health programs—particularly in workplace reintegration, social protection linkages, and scale-up of community enterprises—can inform a more sustainable and rights-based economic empowerment pathway for people affected by leprosy, especially in addressing the dual burden of stigma and disability.
Socio-relational dimension.
The role of relationships—within families, peer groups, and communities—is a consistent determinant of long-term outcomes across chronic conditions. In HIV care, support groups and family-centred models of care have been instrumental in reducing isolation, improving adherence, and strengthening resilience. Couples counselling programs have further demonstrated benefits in disclosure, prevention, and shared responsibility for treatment. In schizophrenia, interventions such as family psychoeducation and community reintegration programs have reduced relapse, improved functioning, and alleviated caregiver burden by building shared understanding and support networks. Tuberculosis and diabetes programs have successfully utilized patient clubs and community adherence groups, which not only improved treatment completion but also created safe spaces for peer-to-peer learning and solidarity.
For leprosy, these experiences point to the need to invest in structured self-help and family support groups. Community-based rehabilitation (CBR) should be emphasized not only for restoring functional ability but also for strengthening social belonging and reducing stigma. Finally, peer networks—modelled after successful People Living with HIV (PLHIV) networks—also called Champions in leprosy (Leprosy mission’s Initiative) can be powerful stigma-reduction tools, providing platforms where persons affected by leprosy visibly lead advocacy, education, and mutual support, thereby normalizing participation and challenging discrimination. These peer-led initiatives are predominantly facilitated by civil society organizations and faith-based agencies, with emerging but still limited formal recognition within national leprosy programs.
Spiritual dimension.
Spirituality has been recognized as a profound resource in coping with chronic conditions, offering both meaning and community-based support. In HIV and tuberculosis, partnerships with faith-based organizations have proven effective for stigma reduction, treatment adherence, and community mobilization. Faith leaders, when engaged positively, can shift public discourse from condemnation to compassion, influencing large networks of believers. In schizophrenia, approaches that integrate meaning-making and recovery narratives—sometimes including the individual’s spiritual beliefs—have helped patients interpret their illness within a broader existential framework, building hope and resilience.
For leprosy, these insights highlight the value of collaborating with faith leaders to actively reshape community narratives, moving away from centuries-old associations of sin or curse. Recent global health discourse, including WHO-aligned calls to integrate spiritual well-being within people-centred care, provides an opportunity to formally acknowledge and responsibly integrate these dimensions within leprosy services [43,44].Care providers should also acknowledge and integrate patients’ own spirituality as coping strategies, which may include prayer, meditation, or other practices that give strength during long periods of treatment and disability, enabling individuals to alter their experience of leprosy not as social exclusion but as part of a meaningful life journey.
S2 Table summarizes findings from 85 studies analyzed in the scoping review categorized by five key dimensions of healing.
Limitations and research gaps
This review provides evidence from HIV, TB, diabetes, and schizophrenia but differences in stigma, chronicity, and programmatic infrastructure mean that transferability cannot be assumed. Publication bias, the predominance of descriptive studies, and lack of standard outcome measures further restrict the strength of conclusions.
At the same time, clear research gaps remain. Comparative implementation research is needed to test how rights-based approaches, peer-led models, and social protection schemes can be integrated into leprosy services across different contexts. Importantly, interactions across dimensions—for example, how livelihood support influences mental health or how spiritual coping affects self-care—remain underexplored. Addressing these gaps through multidisciplinary, patient-centered research is critical to advancing holistic care in leprosy.
Cross-cutting insights and implications for practice and research
This review highlights that holistic leprosy care must extend beyond bacteriological cure to address the broader determinants of wellbeing. Across all dimensions, three cross-cutting themes emerge: the importance of community-based and patient-centred approaches, the integration of services within existing health and social protection systems, and the centrality of stigma reduction as a unifying priority. There is a need for integrated care models that recognize individuals as whole persons, situated within families, communities, and socio-cultural contexts.
In practice, this calls for the development of integrated care packages that combine biomedical treatment with mental health support, socio-economic empowerment, peer and family support networks, and spiritual resources. Embedding such approaches within primary health care and linking persons affected by leprosy to social protection schemes could improve adherence, enhance quality of life, and reduce exclusion. Stigma reduction is best achieved when these elements are mobilized together through peer-led initiatives, community-based rehabilitation, and engagement with faith and community leaders.
For research, priorities include testing care packages in leprosy contexts, using robust designs to evaluate feasibility to embed them in public health programs, their effectiveness and lived experiences. Studies should also explore the intersections between dimensions—for instance, how livelihood opportunities influence mental health, or how spirituality sustains long-term self-care. Mixed-methods trials, evaluations and longitudinal research will be particularly valuable.
Finally, for policy, the framework points to a shift from charity-based responses toward rights-based approaches. National programs must integrate psychosocial and spiritual care [45–47] strengthen disability-inclusive development, and ensure access to social protection. Such policies would not only accelerate progress toward zero leprosy but also safeguard dignity, belonging, and resilience among persons affected.
Conclusion
This review demonstrates that achieving zero leprosy requires care that transcends bacteriological cure, embracing mental, social, economic, and spiritual dimensions alongside the biomedical. By drawing lessons from HIV, TB, diabetes, and mental health, and adapting them thoughtfully, leprosy programs can move toward genuinely holistic, person-centered care. The proposed framework offers a roadmap for practice, research, and policy—one that prioritizes dignity, resilience, and inclusion as much as medical outcomes. Future research should validate the 5D framework through mixed-methods studies in diverse leprosy-affected settings
Supporting information
S1 Table. Characteristics of included studies in the scoping review.
This table presents detailed information on all 85 studies included. The table corresponds to PRISMA-ScR checklist item 15.
https://doi.org/10.1371/journal.pntd.0013748.s001
(DOCX)
S2 Table. Summary of outcomes across chronic diseases included in the scoping review.
This table synthesizes findings from 85 studies, categorized by five key dimensions of healing—physical, psychological, social (relational), socioeconomic, and spiritual—across five chronic conditions: leprosy, tuberculosis, diabetes mellitus, HIV/AIDS, and schizophrenia.
https://doi.org/10.1371/journal.pntd.0013748.s002
(DOCX)
S3 Table. PRISMA-ScR Checklist.
This table provides a detailed mapping of the 22-item PRISMA-ScR checklist to the corresponding sections of the manuscript.
https://doi.org/10.1371/journal.pntd.0013748.s003
(DOCX)
Acknowledgments
The authors thank all study collaborators, institutional colleagues, and individuals affected by leprosy whose experiences and insights informed this review.
References
- 1. Mitra AK, Mawson AR. Neglected tropical diseases: epidemiology and global burden. Trop Med Infect Dis. 2017;2(3).
- 2. Molyneux DH, Asamoa-Bah A, Fenwick A, Savioli L, Hotez P. The history of the neglected tropical disease movement. Trans R Soc Trop Med Hyg. 2021;115(2):169–75. pmid:33508096
- 3. Scollard DM, Adams LB, Gillis TP, Krahenbuhl JL, Truman RW, Williams DL. The continuing challenges of leprosy. Clin Microbiol Rev. 2006;19(2):338–81. pmid:16614253
- 4. Lockwood DNJ. Chronic aspects of leprosy-neglected but important. Trans R Soc Trop Med Hyg. 2019;113(12):813–7. pmid:30715525
- 5. Pinheiro MGC, Miranda FAN de, Simpson CA, Carvalho FPB de, Ataide CAV, Lira ALB de C. Understanding “patient discharge in leprosy”: a concept analysis. Rev Gaucha Enferm. 2018;38(4):e63290. pmid:29933418
- 6. Nabarro LEBB, Aggarwal D, Armstrong M, Lockwood DNJJ. The use of steroids and thalidomide in the management of erythema nodosum leprosum; 17 years at the Hospital for Tropical Diseases, London. Lepr Rev. 2016;87(2):221–31.
- 7. Epidemiological Characteristics of Leprosy Reactions: 15 Years Experience from North India1 - ProQuest Available from: https://www.proquest.com/openview/a3c5d83f28fee044819a9d9b0a173fdc/1?pq-origsite=gscholar&cbl=48724
- 8. Litt E, Baker MC, Molyneux D. Neglected tropical diseases and mental health: a perspective on comorbidity. Trends Parasitol. 2012;28(5):195–201. pmid:22475459
- 9.
Sandi YDL, Sukartini T, Efendi F. The live experience of people with leprosy - a systematic review of qualitative evidence. Scitepress. 2019. p. 161–73.
- 10. Dos Santos AR, de Souza Silva PR, Costa LG, Steinmann P, Ignotti E. Perception of cure among leprosy patients post completion of multi-drug therapy. BMC Infect Dis. 2021;21(1):916. pmid:34488660
- 11. van Haaren MA, Reyme M, Lawrence M, Menke J, Kaptein AA. Illness perceptions of leprosy-cured individuals in Surinam with residual disfigurements - “I am cured, but still I am ill”. Chronic Illn. 2017;13(2):117–27. pmid:27385505
- 12. Davies B, Kinfe M, Ali O, Mengiste A, Tesfaye A, Wondimeneh MT. Stakeholder perspectives on an integrated package of care for lower limb disorders caused by podoconiosis, lymphatic filariasis or leprosy: A qualitative study. PLoS Negl Trop Dis.
- 13.
World Health Organization. Global Programme to Eliminate Lymphatic Filariasis: Progress Report 2000-2009 and Strategic Plan 2010-2020. World Health Organization. 2010;1–93.
- 14. Warner R. Recovery from schizophrenia and the recovery model. Curr Opin Psychiatry Available from: https://journals.lww.com/co-psychiatry/Fulltext/2009/07000/Recovery_from_schizophrenia_and_the_recovery_model.8.aspx
- 15. Koschorke M, Padmavati R, Kumar S, Cohen A, Weiss HA, Chatterjee S. Experiences of stigma and discrimination of people with schizophrenia in India. Soc Sci Med. 2014;123:149–59.
- 16.
Wagner J, Tennen H. Coping with diabetes: Psychological determinants of diabetes outcomes. Coping with Chronic Illness and Disability: Theoretical, Empirical, and Clinical Aspects. 2007. p. 215–39.
- 17. Jaramillo J, Yadav R, Herrera R. Why every word counts: towards patient- and people-centered tuberculosis care. Int J Tuberc Lung Dis. 2019;23(5):547–51. pmid:31097061
- 18. Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come?. J Int AIDS Soc. 2013.
- 19.
WHO released updated guideline on HIV service delivery [Internet]. [cited 2026 Jan 26].
- 20. Guidance on mental health policy and strategic action plans: Module 1. Introduction, purpose and use of the guidance [Internet]. [cited 2026 Jan 26]. Available from: https://www.who.int/publications/i/item/9789240106796
- 21.
World Health Organization. Guidance on mental health policy and strategic action plans Module 2. Key reform areas, directives, strategies, and actions for mental health policy and strategic action plans.
- 22.
World Health Organisation. World Health Organization, 2024. Health equity for persons with disabilities: guide for action. WHO Website
- 23. O’Donnell MR, Daftary A, Frick M, Hirsch-Moverman Y, Amico KR, Senthilingam M, et al. Re-inventing adherence: toward a patient-centered model of care for drug-resistant tuberculosis and HIV. Int J Tuberc Lung Dis. 2016;20(4):430–4. pmid:26970149
- 24. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med.
- 25. Korsah KA. The use of religious capital as a coping strategy in self-care by type 2 diabetes patients in a Ghanaian hospital. J Relig Health. 2023;62(6):4399–416.
- 26. Zolnierek KBH, Dimatteo MR. Physician communication and patient adherence to treatment: a meta-analysis. Med Care. 2009;47(8):826–34. pmid:19584762
- 27. Oliveira DT de, Sherlock J, Melo EV de, Rollemberg KCV, Paixão TRS da, Abuawad YG, et al. Clinical variables associated with leprosy reactions and persistence of physical impairment. Rev Soc Bras Med Trop. 2013;46(5):600–4. pmid:24270251
- 28. Richardus JH, Finlay KM, Croft RP, Smith WCS. Nerve function impairment in leprosy at diagnosis and at completion of MDT: A retrospective cohort study of 786 patients in Bangladesh. Lepr Rev. 2023;28.
- 29. The Vital Role of NGOs in Community-Based Rehabilitation • Psychology Town. Available from: https://psychology.town/community-based-rehabilitation-cbr/vital-role-ngos-community-rehabilitation/#google_vignette
- 30. World Health Organization. Why implement CBR? [Internet]. Available from: http://www.who.int/disabilities/cbr/cbr_
- 31. Castelein S, Bruggeman R, van Busschbach JT, van der Gaag M, Stant AD, Knegtering H, et al. The effectiveness of peer support groups in psychosis: a randomized controlled trial. Acta Psychiatr Scand. 2008;118(1):64–72. pmid:18595176
- 32. Öz C, Ünsal Barlas G, Yildiz M. Opinions and expectations related to job placement of individuals with schizophrenia: a qualitative study including both patients and employers. Community Ment Health J. 2019;55(5):865–72.
- 33. Güner P. Illness perception in Turkish schizophrenia patients: A qualitative explorative study. Arch Psychiatr Nurs. 2014;28(6):405–12.
- 34. Lilford RJ. Self-care for people affected by leprosy. Lepr Rev. 2021;92(4):314–6.
- 35.
5 ways to access self-care interventions [Internet]. [cited 2022 May 6].
- 36. Ilozumba O, Lilford RJ. Self-care programmes for people living with leprosy: A scoping review. Lepr Rev. 2021;92(4).
- 37. Leprosy related mental health | Infolep Available from: https://www.leprosy-information.org/key-topics/zero-stigma-and-discrimination/leprosy-related-mental-health
- 38. World Health Organization (WHO). Mental health of people with neglected tropical diseases. World Health Organization (WHO) [Internet]. 2020 [cited 2025 Sep 18];1–55. Available from: https://iris.who.int/bitstream/handle/10665/335885/9789240004528-eng.pdf?sequence=1
- 39. World Health Organization. Mental health of people with neglected tropical diseases: towards a person-centred approach [Internet]. 2020 [cited 2021 Jul 5]. 1–55 p. Available from: https://www.who.int/publications/i/item/9789240004528
- 40. Islam QS, Ahmed SM, Islam MA, Kamruzzaman M, Rifat M. Beyond drugs: tuberculosis patients in Bangladesh need nutritional support during convalescence. Public Health Action. 2013;3(2):136–40. pmid:26393016
- 41. Fuady A. Closing the Evidence Gap of Cash Transfer for Tuberculosis-Affected Households Comment on “Does Direct Benefit Transfer Improve Outcomes Among People With Tuberculosis? - A Mixed-Methods Study on the Need for a Review of the Cash Transfer Policy in India.” Int J Health Policy Manag [Internet]. Available from: https://pubmed.ncbi.nlm.nih.gov/37579478/
- 42. Dave JD, Rupani MP. Advancing Social Protection and Tuberculosis Elimination in India – Beyond Cash Transfers and Towards Addressing Social and Structural Determinants for a Healthier Future;. Int J Health Policy Manag Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC10462078/
- 43. Framework to implement a life course approach in practice Available from: https://www.who.int/publications/i/item/9789240112575
- 44. Quality of care [Internet].Available from: https://www.who.int/health-topics/quality-of-care#tab=tab_1
- 45. The Lancet Regional Health – Europe. Time to integrate spiritual needs in health care. The Lancet Regional Health - Europe [Internet]. 2023 May 1 [cited 2025 Oct 15];28:100648. Available from: https://www.thelancet.com/action/showFullText?pii=S2666776223000674
- 46. Long KNG, Symons X, Vanderweele TJ, Balboni TA, Rosmarin DH, Puchalski C. Spirituality as a determinant of health: emerging policies, practices, and systems.
- 47. Pandav CS, Kumar R. Spiritual health: Need for its mainstreaming in health-care delivery in India. Indian J Public Health. 2018;62(4):251–2.