Background

The psychosocial well-being of people affected by skin-related neglected tropical diseases (skin-NTDs) is often negatively impacted by the compounding effects of stigma, hostility, chronic disability, and disfigurement [1,2]. Social exclusion and discrimination from the stigmatization of skin-NTDs also contribute to adverse psychological effects on those affected [3]. Efforts in interventions for the control, prevention, and elimination of Neglected Tropical Diseases (NTDs) and skin-NTDs have increased in recent years, but less attention has been given to the negative psychosocial effects of these conditions [4].

NTDs are a group of 20 diseases that occur in both tropical and subtropical climates [5]. The group of diseases shares a further commonality of being linked with poverty and disproportionately burden the poor [5]. While NTDs are primarily found in the Americas, Southeast Asia, and Sub-Saharan Africa, they tend to flourish in environments with less sanitation, clean water, healthcare, and proximity to animals, which compounds their disproportionate effects on poorer communities [5,6]. NTDs collectively cause an estimated 200,000 deaths per year, with 19 million disability-adjusted life years (DALYs) lost annually, encompassing approximately 1% of the global burden of disease, with data indicating a larger prevalence in Central and East Africa, Brazil, and Yemen [7–9]. It is therefore evident that despite the significant global presence of and burden of NTDs, they tend to be neglected by public health initiatives, research, and drug development [2].

There are several reasons for the global neglect of NTDs. NTDs are intrinsically associated with poverty and inequity [8]. Populations affected by NTDs often live in rural areas, slums, and conflict zones, which predisposes those affected to having less priority in public health initiatives [10]. As NTDs are predominantly found in lower-income settings, there have historically been minimal economic incentives for research and treatment funding [8]. Contributing to the inequity of NTDs is the sociocultural stigma that often surrounds these diseases, which prevents people from seeking healthcare and acts as an obstacle to creating global awareness [8]. Furthermore, the need for individual-based treatment and diagnoses as well as the inability to treat NTDs through efforts such as mass drug administration acts as a barrier for large public health initiatives [2]. The higher mortality rate of diseases such as HIV/AIDS and tuberculosis further contributes to NTDs often being overshadowed in the area of public health [8].

Skin-NTDs are a subgroup of at least 10 NTDs that present with manifestations of the skin, such as skin lesions and disfigurement [11]. The World Health Organization (WHO) classifies the following NTDs as skin-NTDs; “Buruli ulcer; chromoblastomycosis and other deep mycoses (including sporotrichosis); cutaneous leishmaniasis; leprosy; lymphatic filariasis; mycetoma; noma; onchocerciasis; post-kala-azar dermal leishmaniasis; scabies and other ectoparasites (including tungiasis); podoconiosis; and yaws” [12]. Many skin-NTDs have commonalities in their physical presentation. Specifically, wounds are a common symptom of Buruli ulcer, cutaneous leishmaniasis, and yaws. Lymphoedema, the swelling of bodily tissue, is also common, presenting in lymphatic filariasis (LF) and leprosy reactions [13,14]. Additionally, skin-NTDs are co-endemic, with persons and communities being affected by multiple skin-NTDs at once, complicating diagnosis and treatment [15]. Further, skin-NTDs share in the stigmatization and discrimination of those affected, which reinforces a cycle of vulnerability, isolation, and poverty [2,16].

Stigma and exclusion of persons suffering from skin-NTDs have significant implications on one’s mental health and overall psychosocial well-being [16]. Stigma itself may be conceptualized according to Link and Phelan [17]. For stigma to exist, people must recognize human differences, and a dominant culture must provide a link between these differences and undesirable characteristics. People are labeled according to these differences, creating distinct groups that leads to discrimination and undesirable outcomes [17]. Societal discrimination and stigma are common for all skin-NTDs and often continue even after the afflicted person has been cured, creating a long-term impact on their interaction with society. Examples of this include effects on partner relationships, with common instances of avoidance, abandonment, and rejection of partners suffering from skin-NTDs. Furthermore, perceived associations between skin-NTDs and sinfulness can subject afflicted persons to hostile actions, unwanted attention, and gossip [1]. Such actions have negative implications on those affected by skin-NTDs and their mental health, which the WHO defines as a “state of mental well-being that enables people to cope with the stresses of life, realize their abilities, learn well and work well, and contribute to their community” [18]. It is evident that the stigmatizing nature of skin-NTDs negatively affects the mental health and well-being of those affected, acting as a barrier for persons to have meaningful lives, relationships with others, and interactions within their communities. This is further demonstrated in recorded instances of persons affected by skin-NTDs being distanced from their communities while also experiencing feelings of shame and even incrimination [19].

In 2023, the WHO held a meeting to discuss skin-NTDs, which focused on addressing these diseases and indicated a gap in attention to the psychosocial aspects of skin-NTDs [1,20]. Specifically, the WHO noted that persons affected by skin-NTDs face physical, emotional, and social problems that, when accounted for, can increase the burden of disease measured in years lived with disability (YLD) [20]. For example, when adding depressive effects, the YLD of lymphatic filariasis is doubled, indicating the significance of the psychosocial effects of skin-NTDs and how they are often underestimated [21]. The recent attention that the WHO has drawn towards combatting NTDs and skin-NTDs has increased programs and research on the group of diseases [20]. Still, many of these programs pay little attention to the psychosocial effects of skin-NTDs.

Further, the literature indicates how community involvement and interventions can be used to improve mental health [22,23]. People suffering from poor mental health, such as many of those affected by skin-NTDs, experience significant barriers to community involvement and engagement that could be used instead to improve one’s mental health and well-being [22]. Community involvement and interventions for those affected by skin-NTDs may contribute to one’s mental health and well-being, especially in areas with limited formal mental health services. Community-based interventions may further provide greater patient empowerment, giving autonomy to historically vulnerable populations. A recent scoping review researched existing community models for addressing skin-NTDs and found that many such models include person-centered approaches that enhance the participation and inclusion of those affected by skin-NTDs [24]. The review further found that only 30% of their studies addressed mental health, indicating that more evidence is required to understand practices related to the mental health and stigma of those affected by skin-NTDs [24]. Community platforms of interventions are promising in their possible improvements for one’s mental health and psychosocial well-being, but more evidence is necessary to understand these interventions, their effectiveness, and further uses.

The objective of this systematic review was to target the knowledge gap regarding the psychosocial effects of skin-NTDs and interventions used in improving the psychosocial well-being of persons-affected. Understanding how local communities respond better to the stigma and discrimination surrounding skin-NTDs and community-based interventions can provide greater insight into improving mental health and the overall well-being of those affected. Expanding the literature on this topic will increase resources and information to help persons affected by skin-NTDs. This systematic review provides information on the effectiveness of psychosocial interventions and contributes to the Sustainable Development Goals (SDGs) identified by the United Nations [25]. Specifically, the United Nations recognizes NTDs under SDG 3, to ensure healthy lives and well-being for all [25,26].

Therefore, this systematic review aimed to increase the literature and information regarding skin-NTDs and the effectiveness of interventions used by communities to improve the psychosocial well-being of those affected. This systematic review primarily examined community-based interventions with a sub-focus on those that were community-led or initiated. It is noted that all community-led interventions are inherently community-based. Further, as it is important to consider the cost of interventions, a secondary aim was to analyze their cost-effectiveness.

Theoretical considerations

This study utilized an integrated theoretical framework to evaluate the effectiveness of community-based psychosocial interventions for those affected by skin-NTDs [27]. The overall goal of the framework was to comprehensively assess the benefits and harms, resources used, and cost-effectiveness of community-based interventions aimed at improving the psychosocial well-being of those affected by skin-NTDs [27]. The framework was developed by the fig. [27] and primarily used quantitative indicators to determine intervention effectiveness and cost-effectiveness. The present study adapted this to allow for the inclusion of both qualitative and quantitative analyses of health indicators in the community-based interventions.

There are three domains of the framework used to assess benefits and harms of an intervention: health, community well-being, and community processes [27]. The health domain considers the impact of interventions using information of quality of life for individuals affected by skin-NTDs. The community well-being domain involves the impact on the community as a whole, rather than on individual health. The community processes domain further considers how the community and its values are involved in designing, implementing, and participating in an intervention.

The systematic review primarily focused on analyzing the reported effectiveness of community-based interventions according to the framework previously described [27]. Cost-effectiveness was secondarily considered for each intervention if adequate data were provided. When assessed, cost-effectiveness was analyzed qualitatively to determine a given intervention’s long-term benefits, advantages, and disadvantages [27]. This systematic review followed these theoretical guidelines to analyze the effectiveness of community-based interventions for the psychosocial well-being of those affected by skin-NTDs.

Ethics statement

This study received ethical clearance on 17/03/2024 from the research ethics committee from the Maastricht University Faculty of Health Medicine, and Life Sciences (FHML-REC).

Design

The study protocol was registered with PROSPERO (CRD420251015152). This systematic review followed PRISMA guidelines and aimed to collate and analyze evidence on the types of community-based psychosocial interventions for persons affected by skin-NTDs as well as the effectiveness and cost-effectiveness of the interventions [28].

Search strategy

The search string for PubMed, Web of Science Core Collection, Global Health (EBSCO), and Embase (OVID) are shown in Table 1. The MeSH terms for PubMed were determined using six manually chosen sample papers deemed relevant to the study by the reviewers. The search strands successfully returned all six sample papers. The strands were then converted to the Web of Science Core Collection, Global Health (EBSCO), and Embase (OVID) databases.

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Table 1. Search string.

https://doi.org/10.1371/journal.pntd.0013997.t001

Eligibility criteria

Eligibility criteria included the use of full text English papers that were publicly accessible. There were no restrictions on the publication date or geographical location of the papers. To be incorporated in this systematic review, studies must have included community-based interventions for the psychosocial well-being of persons affected by skin-NTDs. Furthermore, PICOS criteria were used to identify the population, intervention, comparison, outcome, and study type of the papers to be included [29].

The population included people affected by skin-NTDs that had experienced effects on their mental health and well-being. The intervention studied had to be a community-based intervention designed to improve the mental health of the population of interest. The comparison involved the effectiveness of the interventions on improving psychosocial well-being as judged by the researchers. The outcome was the reported psychosocial well-being of the participants as reported on the individual and community-levels. The study-type included original peer-reviewed qualitative, quantitative, and mixed-methods studies.

For the purposes of this study, community-based interventions were defined according to a modified version of McLeroy et al.’s [30] definition. Community-based interventions are those outside the formal health-care sector, but within the setting of the community itself [30]. Community-led interventions are a subtype of community-based interventions that are instigated by or primarily planned by the local community.

Data collection and management

A systematic literature search was carried out with the search string developed for each database on 31/03/2025. Rayyan software was used to manage the study selection process [31]. After deduplication, at least two authors each reviewed the results of the search to screen for studies. The screening included a review of the study’s title and abstract. At least two authors then independently reviewed the full text of each potentially relevant article before a consensus was reached on which to include in the data extraction process. Conflict on inclusion of articles was resolved through mediation with the senior author.

Data extraction and analysis

Data extracted from the selected studies were as follows: location, study design and measurements of effects, sample size, setting of the study, population, disease addressed, intervention used, community processes (with regards to the intervention), outcomes, and the social, cultural, and political contexts. If provided, costs of the intervention were also extracted. These data were analyzed using the theoretical framework on the effectiveness of community-based interventions as described above [27].

Quality assessment

Methodological quality of the included studies was assessed using CASP checklists specific to the study’s design. CASP checklists were also used to screen for risk of bias in accordance with PRISMA guidelines [28,32].

Interventions

1. (I). Group-based interventions

Four papers on three unique studies from Nigeria, Nepal, and the DRC assessed group-based interventions. The group-based interventions can be designated as self-help or peer support groups depending on how they are facilitated. Self-help groups were managed by a community team and its group members included people affected by skin-NTDs. Peer support groups were facilitated by persons affected by skin-NTDs, who were trained in providing psychological support. The group-based interventions included activities such as counselling, health literacy and self-care training, and economic development, which occurred in a group setting [33–36].

Disease care was a reported intervention target in both of the self-help groups from Nigeria and the DRC, as well as the peer-supports groups from Nepal [33–36]. Another intervention reported on in the self-help group from Nepal was improving health literacy [35]. The peer support groups from the DRC and Nigeria used participatory methods with the local communities and focused on providing psychosocial support and mental wellness activities, alongside interventions targets such as active case finding, vocational training, and general health [33,36].

Results of the group-based interventions provided information relating to the health and community processes domains of the theoretical model and specific results are summarized in Table 2 [27,33–36]. All group-based interventions had a significant positive effect on individual health, evidenced by decreased internalized stigma, increased resilience and self-esteem. Additionally, improvements to community processes are demonstrated through the increased ability of persons affected by skin-NTDs to participate in one’s family and community, enhancing their social connections. Community well-being was unable to be assessed for all group-based interventions as only two out of the four papers included context on the communities involved, and none of the papers included specific measured relating to community well-being.

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Table 2. Summary of group-based interventions.

https://doi.org/10.1371/journal.pntd.0013997.t002

1. (II). Counselling

Counselling interventions were discreetly studied by three papers, all of which focused on the Cirebon District in Indonesia as a part of the stigma, assessment, and reduction of impact (SARI) project [37–39]. These interventions involved trained counselors helping individuals affected by skin-NTDs to understand their disease, their experiences, and their rights as human beings to improve one’s quality of life and well-being.

Two of the papers studied the “Rights-Based Counselling Module” (RBCM), while the other focused on the role and training of lay and peer counsellors that were used in the RBCM studies [37–39]. RBCM specifically focused on improving affected persons’ knowledge on their human rights, aiming to empower these clients through various forms of individual, group, and family counselling. This counselling was designed to be provided by people with experiences of leprosy or those with connections to people affected by the disease, and required skills such as active listening, showing empathy, and asking effective questions [39].

Specific results are summarized in Table 3; Overall, the studies provide evidence that counselling is an effective intervention for improving the psychosocial well-being of people affected by leprosy. These interventions provided transformative experiences for people affected by leprosy. Patients had powerful realizations of their rights as human beings and became more capable of responding to discrimination and social exclusion. Regarding the health domain of the theoretical framework, counselling was effective in decreasing internalized stigma [27]. Counselling further showed positive effects on the community processes through increased participation in one’s community and the stimulation of more supportive familial environments. Information regarding community well-being was not provided.

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Table 3. Summary of counselling interventions.

https://doi.org/10.1371/journal.pntd.0013997.t003

1. (III). Basic psychological support

Three papers with two unique studies from India discussed Basic Psychological Support by peers (BPS-N) as an intervention [40–42]. BPS-N is a peer-delivered support program that uses the principles of “Look, Listen, Link” to address psychosocial problems of people affected by skin-NTDs and NTDs in general. These principles are used by peer supporters (PSs) to help identify people in need of support, provide information, address their needs, and connect them to others for social support. Specifically, two of the studies collected pre-intervention, immediate post-intervention, and two months-post intervention data relating to stigma, mental well-being, depressive symptoms, and social participation [40,41]. The third paper built on these results to develop a formal intervention guide [42].

Results of the studies are outlined in Table 4 and relate to the health and community processes domains of the theoretical framework [27]. Improvements to health were evidenced by decreased stigma and improved mental well-being. BPS-N also resulted in reduced depressive symptoms were immediately following the termination of the study. Regarding community processes, PSs reported positive experiences, and the intervention helped promote interaction within the community. It is noted, however, that some clients’ expectations were misaligned with the intervention, with some participants requesting material and practical support that fell outside of this intervention’s scope.

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Table 4. Summary of BPS-N interventions.

https://doi.org/10.1371/journal.pntd.0013997.t004

1. (IV). Management programs

Two papers from India and Rwanda studied management programs for specific diseases [43,44]. These interventions were implemented into communities by NGOs and included education and skills-building sessions, allowing affected persons to learn to manage their physical symptoms. Significantly, these programs did not include an intervention to discreetly improve mental well-being. However, these interventions were included due to having effects on mental health and psychosocial well-being in persons affected by skin-NTDs.

The program in India studied the psychosocial effects and social transformation for people with LF-related disabilities using a previously established morbidity management and disability prevention (MMDP) program focused on hygiene, skincare, and lymphedema-reducing activities [43]. The program in Rwanda also studied a previously established program, however, this program focused on podoconiosis prevention and education (PEP) [44]. PEP included interventions for treatment procedures, wearing closed-toed shoes, and leg raising. Both programs were tailored to address specific symptoms and aspects of the individual skin-NTDs LF and podoconiosis, respectively.

The results from both management programs are displayed in Table 5 and provide evidence relating to health, community processes, and community well-being domains of the theoretical framework [27,43,44]. Patients’ experiences in both programs indicate value in the health domain, with improvements in participants’ quality of life, and decreased stigma and discrimination. In the PEP intervention, some patients credited improvements to the appearance and odor of their feet to reduced stigma and increased social participation. Additionally, patients had increased knowledge and skills development, along with improved physical symptoms from their disease. Improvements in community processes were evidenced in increased community support and positive effects on one’s ability to participate in their community.

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Table 5. Summary of management programs.

https://doi.org/10.1371/journal.pntd.0013997.t005

1. (V). Mixed interventions

Four papers on three unique studies reported on mixed interventions for improving the psychosocial well-being of people affected by skin-NTDs [45–48]. Mixed interventions are defined by combining multiple types of interventions to comprehensively target the effects of skin-NTDs. These interventions often include combinations of management programs, counselling, educational sessions, self-help groups, and community workshops.

Specifically, the study from Indonesia is related to the papers on RBCM and lay and peer counselling from the SARI project reported above and assessed three interventions (counselling, socio-economic development, and community contact), randomly allocating them in pairs to leprosy-affected persons in Cirebon District, Indonesia [45]. The papers from Ethiopia assessed the Excellence in Disability Prevention Integrated across NTDs (EnDPoINT) care package involving education sessions on self-care, counselling sessions, self-help groups, community-level workshops, and training in MMDP. One of these papers was an economic assessment of EnDPoINT and the results are presented elsewhere. The study from Haiti implemented a Chronic Disease Self-Management Program (CDSMP) into peer-led support groups called Hope Clubs that had been previously established in 1998 to provide education, self-care motivation, and opportunities for self-esteem and disease management for women affected by LF [48].

Results of the mixed interventions are summarized in Table 6, excluding the economic assessment. Overall, the mixed interventions resulted in decreased stigma, participation restrictions, and increased quality of life. The specific results varied by intervention, however, as a whole, the mixed interventions appeared to result in improvements across the health, community processes, and community well-being domains [27]. The reduction in stigma and depression, as well as improved psychosocial well-being indicate effectiveness for improving the individual health of persons affected [45,46,48]. Increased community participation, social support, and decreased discrimination in two of the studies provides evidence of larger community benefits as part of the community processes domain [45,46]. Additionally, one study provided information on an intervention and its relation to community well-being through targeting areas with leprosy-related stigma that lacked existing stigma-reducing interventions [45].

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Table 6. Summary of mixed interventions.

https://doi.org/10.1371/journal.pntd.0013997.t006

Community-led interventions

Of the 16 community-based papers assessed, only four included community-led interventions. The community-led interventions involved three unique studies from the DRC, Nepal, and Nigeria [33–36]. Two of the papers on peer-support groups used participatory research methods, emphasizing co-construction and co-ownership in the development of their interventions [33,36]. The paper from Nigeria specifically highlighted community ownership of the intervention as a significant factor in its sustainability. Similarly, the paper from the DRC noted a significant strength in the co-development of the peer-support groups, however, the impact and sustainability of the intervention cannot fully be known until further studies are conducted.

Of these four studies with community-led interventions, two papers with one distinct study reported on pre-existing self-help groups facilitated by a community team in Nepal. However, no further information on the leadership or how this may have impacted the intervention was provided [34,35]. Another study implemented a new management program intervention into pre-existing community-led support groups [48]. No further information was provided on the leadership of the initial support groups. The majority of other interventions included in this systematic review were implemented from external researchers or NGOs.

Cost effectiveness

Information regarding the costs of interventions was limited, with only one study providing a significant cost analysis. Six papers described their interventions as being “cost-effective”, “low cost”, or “inexpensive” without providing figures or further information [33,38,42,44,45,48]. These interventions included peer-support groups, lay and peer counselling, management programs, and BPS-N. One paper provided information for a BPS-N intervention, where each peer supporter was paid US $13 per month, with additional stipends for meeting-related travel [40]. Another paper described that lay and peer counsellors were used to lower the costs of the intervention, however, no figures or further information were provided [37]. One paper provided a comprehensive economic assessment of the EnDPoINT care package [47]. The cost of implementation activities was 204,388 ETB (£ 12,263), using the average exchange rate from 2019 and purchasing power parity. The average cost of care supplies and medication was calculated to be 870 ETB (£ 52) per patient, which included custom-made shoes (570 ETB or £34). The study noted that the majority of the costs associated with this intervention were incurred upfront, and when fully adopted, would decrease. No information about the cost in relation to the effectiveness of the interventions was provided in any of the included studies.

Methodological quality

The methodological quality of the included papers was evaluated using CASP checklists and the results are summarized in S2 Appendix. Papers were assessed using the cohort, cross-sectional, qualitative, randomized controlled trial (RCT), and economic evaluation checklists according to their design. The methodological quality for many of the studies was high. Notably, three of the qualitative studies lacked adequate assessment of the relationship between the researcher and participants [39,40,43]. For four of the qualitative studies, rigorous analysis of the data was unable to be determined [37,39,40,42]. Two of the RCT studies indicated a lack of ‘blinding’ regarding the intervention and loss of participants from the beginning to the end of the studies [38,45]. The cross-sectional papers provided less information or insufficient evidence that the research is valuable without further studies [34,41,44].

Strengths and limitations

This systematic review followed the reporting guidelines as prescribed by PRISMA to collect evidence on community-based interventions for improving the psychosocial well-being of persons affected by skin-NTDs [28]. Adding to the methodological rigor is the inclusion of all skin-NTDs in the search string and the searching of multiple databases. The included studies were also subjected to quality appraisal, which allowed for a comprehensive analysis of the evidence provided. However, this review has a few limitations. Only full text papers written in English were included, possibly causing a misrepresentation of evidence or the exclusion of potentially relevant information. This may explain the lack of papers including the full range of skin-NTDs, as only five skin-NTDs were represented in this review, with 15 of 16 included papers targeting leprosy and LF.

Recommendations

Community-based interventions to improve the psychosocial well-being of persons affected by skin-NTDs should continue to be prioritized in research and strategies targeting skin-NTDs. Given the complex and multidimensional nature of skin-NTDs, interventions should adopt a multi-component design. For instance, interventions should include a knowledge base both for persons affected and their communities. This knowledge base should focus on providing accurate information on the nature of skin-NTDs and emphasize that physical disfigurements may persist despite the patient being ‘cured’. This aids in addressing misconceptions and reducing stigma rooted in visible skin-related symptoms. Further components should reflect the role of one’s social environment in mental health and well-being by measuring outcomes for both persons affected by skin-NTDs and their communities. In addition, future research should include innovative components in non-traditional psychosocial interventions. Multiple papers in this review provided evidence on the use of the participatory media- particularly, photovoice- as a method for individuals affected by skin-NTDs to visually represent their experiences and reflect on their well-being [33,36].

A shift toward integrated interventions is also strongly recommended. Given the co-endemicity of multiple skin-NTDs in affected regions, designing interventions that address the shared psychosocial consequences across diseases is both equitable and efficient. Such approaches can help ensure that all skin-NTDs are addressed and mitigate possible competition for resource allocation amongst the diseases [2]. Studies should further aim for integration within local health structures and community systems. The use of participatory research methods is encouraged to create contextually and culturally appropriate interventions. Further, these research methods should aim to include elements of community leadership and co-ownership of interventions. Incorporating community voices into intervention design can further ensure that the specific needs of communities are being met and influence the acceptance and success of interventions being implemented.

Future research should consider all skin-NTDs and provide insight into those with lesser-known impacts. This review did not find any interventions targeting persons affected by chromoblastomycosis, mycetoma, noma, and yaws, amongst others. Future research should aim to include these skin-NTDs, as these diseases have commonalities in experiencing stigma and exclusion, which often affects the mental health of those affected [1]. Specifically, research should target persons affected by noma, which was only included in the WHO list of NTDs in 2023 [55]. Despite evidence of noma patients experiencing discrimination and stigma, there remains a gap in the literature on its psychological burden and efforts to combat or alleviate this [55]. Considering the broad range of skin-NTDs in future research is necessary to meet SDG Target 3.3: End the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases [25,26].