https://orcid.org/0009-0009-8495-8227
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Abstract
While multi-drug therapy revolutionised the treatment of physical symptoms for leprosy, a lack of psychosocial interventions, to combat the psychological burden of the disease, is noticeable. This is especially the case in a lower-middle-income country like India, where leprosy prevalence is highest, yet, it has one of the lowest rates of mental health services in place. This paper (i) conducts a systematic review to gather academic evidence on best practices of psychosocial care interventions of to leprosy patients from across the globe, and (ii) compiles good practices of mental wellbeing and quality of life to propose plausible actions for leprosy patients in India. Following the PRISMA protocol, keywords were searched in four databases, namely PubMed, PsycInfo, Web of Science and Infolep. After examining all 145 search results through inclusion and exclusion criteria, 17 peer reviewed research articles could qualify for final review exercise, whereby the data was systematically appraised. The systematic review reveals several successful psychosocial interventions implemented worldwide. These interventions were categorised into four sub-groups: educational, counselling, cognitive behavioural therapy, and technology-supported interventions. All the studies included in the analysis showcased effective psychosocial interventions that enhanced the quality of life and reduced depression, anxiety, and stress levels in individuals affected by leprosy. These findings highlighted several promising strategies that could be integrated into India’s mental healthcare system. The studies underscored the significance of involving healthcare professionals, and adopting innovative approaches. Consequently, this research proposes a comprehensive blend of diverse psychosocial interventions to alleviate the burden faced by leprosy-affected individuals in India. It is crucial to take into account various confounding factors and local contexts to tailor these interventions to the specific population group. Additionally, enhancing awareness and updating policies related to leprosy care are essential steps in reducing stigmatization against individuals with leprosy in India and other endemic regions.
Citation: Bonkass A-K, Fastenau A, Stuetzle S, Boeckmann M, Nadiruzzaman M (2024) Psychosocial interventions for persons affected by Leprosy: A systematic review. PLOS Ment Health 1(3): e0000091. https://doi.org/10.1371/journal.pmen.0000091
Editor: Wenjie Duan, East China University of Science and Technology, CHINA
Received: February 21, 2024; Accepted: July 11, 2024; Published: August 9, 2024
Copyright: © 2024 Bonkass 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 relevant data are within the paper and its Supporting Information files.
Funding: The authors received no specific funding for this work.
Competing interests: The authors have declared that no competing interests exist.
1 Introduction
Leprosy, an enduring infectious malady attributed to Mycobacterium leprae, is historically intertwined with disability, societal bias, and discrimination. While the advent of multi-drug therapy (MDT) has revolutionized the management of leprosy’s physical manifestations and significantly reduced its global prevalence, leprosy remains a substantial contributor to the disease burden, with 133,802 documented cases in 2021 [1]. Nonetheless, the repercussions of leprosy are not confined to its physical symptoms; they frequently exert a profound influence on mental well-being and overall quality of life (QoL). Various factors converge to generate stigmatization of individuals afflicted by leprosy (PALs). Firstly, untreated individuals may develop conspicuous marks and disabilities owing to nerve damage. Secondly, a lack of public awareness fosters a hostile environment, nurturing both internalized and enacted stigma, as well as social exclusion [2]. Inability to perform daily tasks, engage in employment, or participate in community life can significantly compromise an individual’s well-being and QoL, curtailing their social inclusion. Barcelos et al. [3] underscore that PALs exhibit markedly lower QoL in comparison to individuals affected by other dermatological conditions.
Leprosy exerts a profound and far-reaching impact on various aspects of an individual’s life, consequently elevating the risk of developing mental comorbidities, specifically anxiety and depression. This pervasive influence extends into the social sphere, where individuals afflicted by the disease often grapple with stigma and resultant exclusion from their family and friends. Additionally, religious beliefs can compound this stigmatization, as leprosy is frequently misconstrued as a divine curse or retribution for one’s actions [4]. In low-resource settings, individuals confronting mental health challenges face a dual burden, navigating both their physical and psychological well-being, particularly in societies where mental health issues are considered taboo and are accompanied by social stigma [5]. Paradoxically, low-income countries (LICs) bear the brunt of the highest prevalence of mental illnesses while simultaneously grappling with a scarcity of mental health services, aggravated by inadequate financial and political investment [5].
The chasm between the demand for mental health treatment and its provision remains a global challenge. The inadequacy of mental health resources is particularly conspicuous within the Indian healthcare system. The 2016 National Survey of Mental Health Resources, conducted by the Indian Ministry of Health and Family Welfare, revealed an acute scarcity of mental health professionals, with a meager 0.3 psychiatrists per 100,000 people, primarily concentrated in the Western and Southern regions of the country [6,7]. Regrettably, preventive programs remain conspicuously absent and fall far short of addressing the needs of the population.
Only a small fraction of the annual budget, 5.2%, is allocated to health services, with mental health receiving even less attention, accounting for less than 1% [6,8]. Leprosy care predominantly emphasizes the biomedical aspects of treatment, specifically addressing physical symptoms through Multidrug Therapy (MDT) and symptom management. Unfortunately, personal and psychological symptoms are often overlooked within the leprosy treatment framework [9]. This underscores the urgent need to address the deficiency in mental health services for leprosy patients. As a response, this systematic review serves as a foundational step in highlighting the necessity of incorporating psychosocial interventions into leprosy care within the Indian healthcare system, drawing from global best practices. Researchers worldwide have demonstrated the positive impact of diverse psychosocial interventions, characterized by reductions in anxiety and depression symptoms, alongside enhancements in social functioning and self-esteem. Consequently, the provision of psychosocial support and other community-based mental health services can offer both cost-effective and equitable access to care, ultimately leading to improved health and social outcomes [10,11].
Nonetheless, there remains a scarcity of conclusive evidence to effectively address and mitigate the burden of mental health disorders and treatment requirements among Persons Affected by Leprosy (PALs) in India. To mitigate mental illness and elevate the Quality of Life (QoL) among leprosy patients, it is imperative to analyse existing data and tailor treatment plans to the unique needs of individuals [10]. Given the current dearth of data, this paper aims to offer an enlightening overview of psychosocial interventions that have demonstrated effectiveness in enhancing mental well-being and QoL among PALs globally. Furthermore, this paper examines the impact of a leprosy diagnosis on the QoL and mental well-being of patients. The identification of interventions proven effective in other countries will be instrumental in the establishment of mental healthcare services for leprosy patients in India. Consequently, this systematic review endeavours to present a comprehensive synthesis of available studies that focus on effective psychosocial interventions for PALs, with the goal of contributing to the development of evidence-based mental health programs in India [12].
2 Methodology
2.1 Search strategy
The research is based on a literature search conducted in the following databases Pubmed, Web of Science, Infolep, PsycInfo and Google scholar by a single assessor. The latest literature search was on June 28th, 2023. Reports, published studies, reviews and reports were searched by applying a systematic search following a comprehensive search strategy (Table 1). Thereby, the assessor accessed the databases through the institutional VPN-client provided by Maastricht University. The search terms were applied in a Title (TI) and Abstract (AB) search in order to refine the search. With the usage of appropriate search terms, relevant literature was identified according to the PICOS-Scheme (see Table 2), and a full-text screening performed. Only English literature was reviewed; however, the author reviewed Portuguese studies, which have been translated, to widen the search. Due to the lack of available data on mental health issues in leprosy patients, no restriction to the publication period was set. The overall review follows the methodology of the PRISMA checklist (S1 PRISMA Checklist) [13].
2.2 Eligibility, inclusion and exclusion
Firstly, papers dealing with a psychosocial intervention that addresses the relationship between mental wellbeing and leprosy were included. Thereby, a variety of mental disorders were included as can be seen in the search terms. Secondly, the full text of included studies needed to be published in English and must be publicly accessible. Therefore, original research published as peer-reviewed articles and/or book chapters in edited volumes was assessed. The author put no restriction on the publication year of potential studies as there are only limited papers available that assess the link between leprosy and mental health.
On the other hand, there are a number of factors that disqualified studies from being considered for this thesis. While leprosy is one of many NTDs, papers that merely considered other NTDs than leprosy were not valid for this assessment. As this review is looking at effective interventions to promote the QoL and mental wellbeing of PALs, studies that did not show any effect after implementation of the interventions were excluded as they would not be useful in applying the intervention to the Indian context. Furthermore, grey literature, manuscripts and editorials are not acceptable, as well as non-peer reviewed articles as they do not provide validated information.
2.3 Data extraction and analysis
Overall, a total of 145 articles were found in the chosen databases through hand-searches in Google Scholar, based on the above-described systematic literature search. The systematic literature search identified 17 suitable studies that were included in this paper, according to the set inclusion and exclusion criteria. The data of the selected studies were extracted through Excel. A spreadsheet was developed assessing the title of the paper, author and publication year as well as how the papers answered the set research questions. An overview of the systematic literature search within the different databases can be found in Table 1. The flowchart in Fig 1 below illustrates the described literature search. Table 3 present the study characteristics of the selected studies in more detail. In order to assess the risk of bias of the included studies, the authors used the RoB RCTs tool [14] for randomized controlled trails, the NICE checklist [15] for qualitative studies, the MMAT tool [16] for mixed-method studies and finally, the critical review form [17] for quantitative studies. The extensive risk of bias analysis, which was performed in the beginning of the review to ensure low risk of bias, can be found in the Table 4. Thereby, the risk of bias within the studies was assessed as medium to low and suitable for the analysis of this review. By closely following the PRISMA guideline, which was developed beforehand, the authors attempted to adapt to the studies’ bias. During the assessment of the chosen studies, the author tried to ensure comparability and generalizability, which was limited due to heterogeneous study designs and interventions.
1) RoB RCTs–Quality Assessment.
Su, T.; Wu, L.; Lin, C.; The prevalence of dementia and depression in Taiwanese institutionalized leprosy patients, and the effectiveness evaluation of reminiscence therapy—a longitudinal, single‐blind, randomized control study.
Domain 1: Risk of bias arsing from the randomization process.
Domain 2: Risk of bias due to deviations from the intended interventions (effect of adhering to intervention).
Domain 5: Risk of bias in selection of the reported result.
Study by: Dadun, D.; van Brakel, W.; Peters, R.; Lusli; M.; Zweekhorst, M.; Bunders; J.; Irwanto, Impact of socio-economic development, contact and peer counselling on stigma against persons affected by leprosy in Cirebon, Indonesia–a randomised controlled trial.
Domain 2: Risk of bias due to deviations from the intended interventions (effect of adhering to intervention).
3 Results
Due to the limited availability of psychosocial interventions to promote the mental wellbeing of PALs merely 17 studies were identified for this systematic review. The chosen studies included data from different countries, namely: Brazil (n = 1), India (n = 7), Nepal (n = 3), Indonesia (n = 4), Egypt (n = 1) and Taiwan (n = 1). As there is a variety of psychosocial interventions available, categories to achieve a better overview of the intervention types were created. The interventions were divided into four categories: educational interventions, counselling strategy, cognitive behavioural therapy (CBT) and other or technology supported interventions. By creating categories, the author ensured that the findings of the included studies are appropriately presented. The categorization facilitates the comparability of the findings, in order to make an educated statement about what intervention would be useful in the Indian setting.
3.1. Psychoeducational interventions
Knowledge is an important factor when it comes to stigmatisation of PALs. Multiple papers have reported how a lack of knowledge can affect the own perception of a disease, such as leprosy [18]. The increase in knowledge around the transmission and symptoms of leprosy would facilitate early detection, which is essential to reduce social and physical consequences of the illness [18]. The literature selection identified two papers which describe effective psychoeducational interventions, namely Mardhiyah [12] and Ahmed & Mohamed [19]. The study conducted by Mardhiyah [12] assessed the knowledge levels of their participants before and after the educational intervention. Based on the data conducted pre and post intervention, the psychoeducational intervention was proven effective. However, it was more effective in participant two and three than in participant one, as their SRQ score was still at six, while the other two had a significantly lower score (4 and 3 respectively). Hence, the set objective for the SRQ score was achieved for two out of three participants. Furthermore, participants self-reported a decrease in psychological distress after the intervention, and increased knowledge [12].
The study by Ahmed & Mohamed [19] was conducted in a Dermatology Hospital in Egypt. To assess the effectiveness of the intervention, pre and post measurements were taken from the individuals, also evaluating the patient’s self-care practices [19]. Thereby, the used measures were validated by a pilot study, performed beforehand. While the majority of the participants (66.7%) had a poor knowledge level regarding leprosy prior the intervention, their levels significantly increased after the educational intervention that was performed by the nurses of the hospital. Thus, 27.8% of the participants achieved an average knowledge level and 61.1% even a good level [19]. Self-care practices improved as well after the educational intervention. Additionally, the psychological problems significantly reduced after the intervention. A statistical difference was further seen in the reduced stigmatisation participants encountered daily. Not only were their psychological problems reduced, but also their psychological needs were more fulfilled after the intervention, as the participants acquired a better understanding of the disease itself and how it affects the body [19].
Overall, the educational interventions evaluated by Mardhiyah [12] and Ahmed & Mohamed [19] were proven effective at the scale they were applied. When developing psychoeducation strategies, like the ones described, it is important to keep in mind the vulnerable situation participants are in.
3.2 Counselling interventions
As there are a number of different intervention types available for the mental wellbeing of leprosy patients, counselling interventions are rather popular among researchers. This type of intervention has been proven effective in other health issues, especially for psychological conditions such as anxiety and depressive disorders [20]. As indicated by some of the included studies, counsellors can also be lay people or volunteer, which makes this kind of strategy not only cost-effective but also more trustworthy for affected individuals [21].
This systematic review included seven studies that used counselling interventions to improve the mental wellbeing of leprosy patients and to reduce stigma-related harm. Bhat et al. [20] assessed how counselling strategies improved the social participation of PALs in 120 patients in Kashmir and Jammu, India. The aim of the counselling intervention was to provide accurate information about the disease itself and how it can be managed. A substantial reduction was observed in the participation restriction scores, which demonstrates to what extent people feel excluded from social activities. Therefore, the percentage of participants feeling extreme restriction decreased from 22.82% to 8.33% while a feeling of no restriction increased from 0% to 3.33%. While the intervention affected people from all demographic backgrounds, the following factors were significant contributors to an increased participation restriction score: being female, aged over 40 years, disabled, unmarried and unemployed [20].
Floyd-Richard & Gurung [22] conducted their research at the Green Pastures Hospital in Pokhara, Nepal. The participants were divided into single sex and children’s groups, together with a counselling psychologist and a nurse. During the sessions, difficult moments of participants’ lives were discussed, as well as resilience strategies to meet their own needs. While the intervention was evaluated as effective in reducing the impact of stigmatisation on leprosy affected persons, the outcome measures were weak. However, by connecting with group members, individuals felt less alone with their problems and fears [22]. To improve the intervention, Floyd-Richard & Gurung [22] recommended the inclusion of recovered leprosy patients as counsellors, in order to build a stronger connection with the participants. Additionally, the researchers admitted that counselling alone may be insufficient to meet the psychological needs of participants, thus, they suggest a combined approach with health educational methods.
While Floyd-Richard & Gurung [22] and Bhat et al. [23] solely used counselling strategies, Dadun et al. [23] added socio-economic development (SED) along with a contact task to the intervention, called “Stigma Assessment and Reduction of Impact’’ Project (SARI) [23]. The controlled trial was performed in Indonesia. While the first session was performed by a professional counsellor, the remaining sessions were provided by lay- or peer-counsellors. The counselling part of the intervention consisted of five sessions on individual, group, and family basis. Lastly, the contact section between the affected people and community members aimed at reducing negative feelings and stereotypes towards leprosy. All three interventions were proven to be effective to improve QoL (p = 0.013), participation restriction (p = 0.001) and stigma (p = 0.001) within the intervention groups. However, only the counselling and the SED intervention was found to significantly improve the QoL of participants (p = 0.036). Social stigma significantly reduced during all three interventions (p = 0.002; p = 0.001 and p = 0.001). Hence, it can be said that the intervention had a beneficial impact on the outcomes within the intervention groups [23].
In Nepal, Jay et al. [21] implemented ten self-help groups for 98 participants throughout different districts where high rates of disability due to leprosy were found. The statistical analysis indicated that there is a positive association between having access to groups and a reduced internalised stigma. The researchers further found a positive association between increased identification with the self-help group and improved psychological wellbeing. Better access to multiple groups was indirectly significantly associated with improved psychological wellbeing (p = 0.001) [21]. As can be seen from the study, having access to social activities within multiple groups, as well as the feeling of belonging to a certain group can help to improve the mental wellbeing of affected leprosy patients.
The rights-based counselling module (RBCM) by Lusli et al. [2] is a much-cited study that, in addition to leprosy patients, further included their family members in the Cirebon District of Indonesia. The counseling was divided into individual, group and family sessions and performed by 23 trained peer and lay counselors. During the RBCM 198 participants received counseling. After the intervention, all of the measures indicated a positive effect of the approach. The SARI scale (p = 0.001) as well as the participation restriction scale (p = .001) decreased while the participants’ QoL (p = .0.001) increased after the counselling sessions. Additionally, when testing for confounders, a significant effect between reduced PSS and SSS score and sex were found, as the counselling intervention was more effective in women [2]. The qualitative data assessment reported similar effects of the intervention, as participants felt more powerful against negative feelings and enacted stigma from others.
Another study conducted in Indonesia was introduced by Susanto et al. [24], aiming at assessing the experiences of PALs after joining self-care groups (SCG). The qualitative data analysis showed that SCG helped to support participant’s ability to take care of themselves and their needs. It further helped affected people to accept themselves and to receive the social acceptance they needed. Hence, the assessed SCG effectively helped PALs to improve their QoL by helping them to become an active member of society again, having an occupation, as well as feeling acceptance from people around them [24].
Van’t Noordende et al. [18] conducted a family-based intervention which was based in two sites, the rural area Odisha and the urban area Telangana in India. The family-based counselling intervention aimed at supporting the participant’s protective abilities and resilience. This format was chosen, as family members and close friends often act as a bedrock of wellbeing and identity of affected persons. The sessions included a problem-solving and action learning approach to emphasize the im-portance of social relationships and family support as well as recognizing spiritual beliefs. All individuals from the Odisha state had a higher WHOQoL BREF (p = 0.0001) which was significantly associated with the intervention. Participants from Telangana also experienced a statistically significant increase in the QoL score (p = 0.004) except the family members of the leprosy patients (p = 0.108). Based on the study’s findings the intervention can be evaluated as effective in increasing QoL and resilience in leprosy patients and their family members. The discrepancy between the different outcomes in the geographical areas can be explained by the varying community demographics and levels of social relationships [18].
The last study was conducted by Jay et al. [25], following an empowerment approach and a group-based initiative. The findings are aligning with results from previous studies and indicate that social belonging to a group has a positive effect on participant’s resilience (p = 0.01), as well as better self- acceptance (p = 0.05). Hence, giving people a sense of belonging through self help groups has a positive effect on people’s psychological well being. As can be seen, all the included studies using a counselling approach came to the same conclusion of it being an effective intervention to reduce stigma and improve the mental wellbeing in PALs. While the studies used similar methods to collect data, the approaches varied slightly as some included family members and others included rights-based counselling strategies.
3.3 Cognitive behavioural therapy
Cognitive behaviour therapy has been widely recognized in recent years, as it has been proven effective in a number of mental disorders, such as bipolar disorder, depression and schizophrenia. The goal of the therapy is for patients to regain their confidence and hope in order to reenter social life. Thereby, there are different types of CBT, as will be seen in the results of the included studies, for instance a muscle relaxation technique [26].
The author identified four suitable interventions that address effective CBT. The first study by Rahmawati & Yuniarti [27] assessed the impact of CBT on the level of depression of 25 persons suffering from leprosy. The statistical test showed significant reduction in the participant’s depression level after the intervention. The results were statistically significant (p = 0.001), meaning that CBT can be seen as effective in reducing depression in leprosy patients. Therefore, moderate depression reduced from 20% to 4% and participants with No depression increased from 0% to 12%. However, Rahmawati & Yuniarti [27] mention that the majority of the participants had merely elementary education (52%) which may have been a limitation for a better outcome of the study. Thus, they recommend the complementary use of health educational interventions together with CBT [27].
A slightly different approach to CBT was presented by Ramasamy et al. [26], as they evaluated the effectiveness of a progressive muscle relaxation technique (PMRT) on depression and anxiety levels of 50 leprosy patients. Furthermore, the participants’ depression and anxiety level were measured through a self-developed questionnaire during face-to-face interviews. After explaining the exercise to all participants, they were asked to perform this technique twice a day for the following five to six days under supervision of physiotherapists. After statistical analysis, a significant difference between pre- and post-test scores was seen for both depression and anxiety (both p = 0.001). Additionally, the PMRT was deemed effective among people suffering from psychological disorders, such as depression and anxiety [26].
A quantitative study by Leite & Caldeira [28] conducted in Brazil, appraised the effectiveness of therapeutic workshops on patients QoL and depression level. In order to assess the participant’s psychological wellbeing, the researchers used the WHOQoL BREF as well as the BDI questionnaire at baseline and six months after the intervention. The analysis indicated that there was a significant reduction of depression levels among the participants as well as an increase in the psychological QoL domain of the WHOQoL BREF (p = 0.001). However, the workshops were only effective to reduce the level of moderate depression (p = 0.001) and no depressive symptoms at all (p = 0.001). The researchers justify the inability of the intervention to improve severe depression (p = 0.557) by saying that these patients are unresponsive to workshops like this and the primary treatment option for them should be antidepressant medications. This indicates the limitations of the CBT approach, whereby researchers need to adapt the intervention in order to help everyone [28].
The study by Su et al. [29] was conducted in a Taiwanese leprosy sanatorium, by appraising the effectiveness of reminiscence group therapy in 129 elderly leprosy patients. However, the data regarding the patients’ cognitive functions was not analysed as this did not answer the research questions. The intervention lasted for 24 weeks, whereby the experimental group attended three group sessions of the reminiscence therapy each week and the control group merely had individual interviews. Su et al. define reminiscence therapy as a non‐ pharmacological intervention which “focuses the therapeutic theme on previously experienced events and systemically reviews subjects’ lifestyle and life stages” [29]. At baseline, 27 of the participants were suspected of suffering from depression based on the GDS-SF score. However, after the intervention, the analysis indicated a statistically significant reduction of depression level among the elderly leprosy patients in the intervention group (p = 0.02). There was no statistically significant reduction in the depression level in participants of the control group. Nevertheless, the reminiscence group therapy was effective in reducing the depression level of PALs in the Taiwanese leprosy hospital [29].
3.4 Other interventions/ technology supported interventions
While the most established intervention types have been mentioned so far, there are some approaches which were unable to match with one of the categories above. Hence, the author summarised the three remaining studies here [30–32]. As seen in the previous chapters, educational, CBT or counselling interventions do not always reach every participant. Hence, it is important to adapt interventions and to combine different approaches, as can be seen in the following three studies.
This was demonstrated with the study conducted by Ramanathan et al. [31] that combines a counselling strategy with surgical correction of the physical symptoms of leprosy patients to reduce anxiety and depression levels. The study was performed in the Central Institute for Leprosy in Agra, India and included a study population of 25 participants. Additionally, to the surgical intervention, researchers provided psychiatric assistance to boost self-confidence and awareness. To assess the patients’ anxiety and depression level, the BDI, “Taylor’s Manifest Anxiety Scale” [31], as well as an Intelligence Scale were applied. The anxiety and depression levels reduced significantly between pre and post intervention. Severe anxiety symptoms reduced from 11 to 5 while severe depression symptoms reduced from 9 to 3. Patients with no anxiety increased from 5 to 15 and patients with no depression symptoms from 7 to 15. After the study’s completion Ramanathan et al. [31] suggested a better inclusion of educational and informational approaches to achieve a better outcome of a decreased psychological burden.
Dossa et al. [30] conducted another study in India, making use of a technique widely used in neurology, the so-called mental imagery [30]. The researcher included 34 participants which were first assessed with the Depression, Anxiety and Stress Scale-21. While the control group received a conventional aerobic exercise programme, the intervention group received the same exercise programme paired with mental imagery sessions. After the intervention, statistical analysis revealed a significant reduction in depression (p = 0.0001), anxiety (p = 0.0002) and stress levels (p = 0.0001) of the intervention group. However, after comparing the results between the control and intervention group only depression levels reduced significantly (p = 0.0037). This indicates that mental imagery is merely effective in reducing depression, but not anxiety or stress [30].
While in previous studies mostly the respective researchers administered the intervention, Geroge et al. [32] focused on an important professional group in terms of healthcare provision—nurses. The study focused on improved nursing intervention to reduce psychological symptoms in 40 female leprosy patients who were admitted to a leprosy referral hospital in India. The nursing intervention entailed individual assessments of the participants followed by 20–30 minutes sessions. Thereby, the nurses tried to address fears and insecurities of the women by applying a relaxation therapy to patients that felt anxious. Geroge et al. [32] found a statistically significant reduction in the anxiety score of the female participants of all age groups (p = 0.01). Anxiety levels decreased most significantly in older women, aged over 40 (p = 0.0001). This study demonstrates the importance of nurses throughout the healthcare provision of leprosy patients, not only for their physical symptoms but also to facilitate the patient’s mental wellbeing [32].
4 Discussion
The 17 included studies demonstrate globally available interventions and their effectiveness to improve the mental wellbeing and QoL of PALs. The research reveals a diverse array of effective approaches, with some suggesting that combining multiple interventions may yield better results [30,25,23,31]. It has been calculated by the WHO, that the indirect and direct economic costs produced by mental disorders are expected to surpass US$ 6 trillion by the year 2030, globally. Thus, providing effective mental health interventions is highly cost-effective as it prevents the deterioration or even emergence of psychological symptoms and hence, makes cost-intensive treatment unnecessary [33,18].
As already mentioned, to find an appropriate intervention, possible conflations of approaches need to be considered. A study by Barakat & Zaki [34] suggests a combined intervention with a counselling and psychoeducational approach. Thereby, researchers need to keep in mind the different levels interventions can be applied on: the intrapersonal level, aiming at individual characteristic; the interpersonal level, that targets relationships between patients and family members or friends; the community level, whereby a certain population group is being addressed and lastly the institutional level, which focuses on laws and regulations that are in place [23]. It is important that the educational interventions aim at community level, while others should be merely focused on the individual. Thus, counselling as well as CBT strategies should be applied on an intrapersonal or possibly interpersonal level, as these interventions are only suitable for a smaller scope [2].
In order to make counselling interventions more cost-effective, the inclusion of lay and peer counsellors or the creation of SCGs, as done by Lusli et al. [2] or Susanto et al. [24], could play a crucial role when it comes to the provision of counselling interventions. Thereby, it could be useful to train people who have recovered from leprosy to provide counselling as this might increase the effectiveness of the intervention due to a higher trustworthiness of the counsellors towards the participants [2]. Furthermore, the introduced interventions by Ramanathan et al. [31] and Dossa et al. [30] show that innovative approaches, like mental imagery or surgical corrections, can be used to promote mental wellbeing in leprosy patients. However, the authors of both studies recommend a complementary intervention with an educational and/ or counselling method. This emphasises the need for more focused research towards the inclusion of more innovative techniques that can be combined with proven approaches to achieve better outcomes. This can be understood as a call for novel innovations and the application of more technology-based interventions as digitalisation facilitates the development of useful apps and websites [35,36].
Several of the included studies found confounding associations between the outcome of their respective intervention and gender [19,20,29]. These findings are supported by a study by Tare et al. (2021) which indicated that women affected by leprosy have a lower QoL due to their diagnosis than men. Additionally, older age has been mentioned to be a confounder in the effectiveness of the interventions. Thus, potential confounders can impact the effectiveness of interventions, which makes studies like the ones by Geroe et al. [32] and Su et al. [29] especially important in the field of mental health in PALs, as they focus on vulnerable groups that might experience more stigmatisation. Nevertheless, it needs to be mentioned that psychosocial interventions are not always the most effective treatment option when it comes to mental disorders in leprosy patients. In severe cases, drug therapy might be the only way to alleviate symptoms [28,37].
When looking at India, the lack of available psychological interventions for PALs is very noticeable. While there have been numerous studies about the prevalence of psychological symptoms in PALs in India, there is no psychosocial support system in place despite single adopted policies aiming at the elimination of leprosy. However, as psychological disorders are often comorbidities of leprosy, it is important to implement a system for comprehensive psychological care [24,30,38,39].
When talking about the implementation of psychosocial interventions for PALs, based on this analysis, one has to keep in mind the different settings and countries the assessed programmes are functioning in. Besides a suitable psychosocial approach, it is important to have a legal foundation for these interventions to work. Thus, the concept of policy learning as described by Sanderson [40] could be one way to mitigate the problems arising when implementing new policies. This approach draws on present experiences from other countries to enhance the national policy regarding better psychosocial care for leprosy patients. This has the benefit of having an evidence-based alternative, while new programmes hold several uncertainties regarding financing, resource demand and appropriateness. Thereby, policymakers often do not look for new knowledge but for approaches that have been proven effective in other settings while addressing similar problems [40].
Yet, one needs to keep in mind that the success of these structural reforms highly depends on the society’s perception towards mental health and NTDs. The blaming of specific population groups, like PALs, can have an adverse effect on internalized as well as enacted stigma. This notion may be aggravated by apparent physical symptoms and deformities caused by leprosy, leading to marginalization of this population group, placing them in the focus of discriminatory aggression [41]. While this paper analyzes psychosocial interventions to improve the QoL and mental wellbeing of PALs, it is crucial to assess what needs to be done to prevent the deterioration of a patient’s mental health in the first place. This includes early detection strategies to reduce the risk of physical disability due to disease progression. Therefore, preventive measures need to be taken before the health deteriorates and to restrict the emergence of stigma and its effect on mental health [2,18,20]. While it is important to change hindering legislation for more integrated mental healthcare, social stigma and marginalisation are produced by people’s attitudes and behaviour towards affected people. Thus, appropriate health education and information dissemination are of utmost importance to support national policies and recommendations by the WHO [33]. This would suggest that in the specific case of India, interventions that promote the mental wellbeing of PALs should mainly be of psychoeducational nature to reach a large number of individuals. Hence, interventions operating on an interpersonal or community level would be most suitable for the Indian context. These eligibility criteria suggest the implementation of psychoeducational interventions as these can be applied in group-session as well as on individual basis. As misinformation and persisting misbeliefs are considerable influences on people feeling stigmatised and hence, suffering from a reduced QoL and mental disorders, psychoeducational methods can countervail these effects (5). Furthermore, this type of intervention requires the least amount of resources as it reaches a large number of people at once and can be easily integrated in the treatment process [19,12]. However, India is still suffering a tremendous lack of mental healthcare personnel which is needed in order to implement any kind of psychosocial intervention as they demand trained personnel [6,32]. Thereby, a stronger inclusion of Accredited Social Health Activists (ASHA) which are engaged on the Indian community level could be an interesting approach to enhance psychosocial interventions for PALs [42]. Furthermore, the inclusion of peer and lay counselors can be useful in the Indian setting, as it is a low-cost approach that achieves significant differences in people’s QoL and psychological health [38]. This could be connected with innovative technological-based interventions which still need to be proven effective in this setting.
Providing meaningful interventions for leprosy affected individuals and thus, improving their QoL highly contributes to the achievement of SDGs 3.3 and 3.4. By continuously educating people on transmission and symptoms of leprosy, early detection and hence, decreasing cases may be the result contributing to sub target 3.3. Furthermore, the implementation of effective psychosocial interventions supports the promotion of the mental wellbeing of leprosy patients, which may lead to a reduced premature mortality in this population group [43].
5 Limitations
One of the main limitations of this review was the limited availability of literature on this topic. This applies not only to the supportive literature, which is rather old, but especially to suitable studies that evaluate a possible psychosocial intervention to improve psychological wellbeing of leprosy participants. Moreover, the included studies show a wide heterogeneity in the used methodology. This may have impacted the comparability of the findings, however, since the term psychosocial interventions comprise a large range of possible approaches this heterogeneity was inevitable. As explained before, the different methodologies were necessary as they provide different perspectives on this topic [38]
6 Conclusion
Due to the obvious research gap in the field of leprosy and mental disorders, no systematic review has yet been done to consolidate the evidence regarding existing psychosocial interventions that address mental illnesses and a reduced QoL in leprosy patients, which makes this review the first of its kind. Thus, this paper aims at providing urgently needed knowledge to ensure that respective stakeholders can create effective treatment plans for mentally affected leprosy patients in low-resource settings such as India.
A leprosy diagnosis is often described as a life-altering event. Relationships and activities, people have previously engaged in, have to be modified or cannot be continued. Yet, the diagnosis does not imply certainty about treatment and future perspectives. By equipping mental health and leprosy advocates with evidence-based research, extensive change can be achieved by making overdue decisions towards a better treatment provision for PALs possible. Overall, the findings of this paper will help leprosy advocates to aim for better research in the relationship between mental health and leprosy. They will further drive awareness to the urgent need of change within the Indian stigma policies and thus, will lead to an improved understanding about leprosy among society. Helping communities to change their perspectives towards the disease will have a major impact on discrimination and stigmatisation against PALs [44]. Consequently, this attitude transformation will aid the primary outcome of this paper, the assessment of effective psychosocial interventions to improve the psychological wellbeing of leprosy patients and how it can be applied to the Indian setting. This review contributes to improved practices within the mental health care in India, as it provides urgently needed data for future implementations.
7 Future recommendations
Keeping in mind the findings of this systematic review, it is important to formulate reasonable policy and research recommendations to facilitate the current situation in not only India but also in other endemic countries. Therefore, it is crucial to increase research towards effective, especially cost-effective psychosocial interventions that help to promote the mental wellbeing of leprosy patients. Furthermore, already available interventions need to be proven for their long-term effectiveness, such as the studies included in this review, and if needed adapted accordingly. The introduced approaches further need to be tested on different patient groups with varying demographics to be able to adapt the interventions to certain population groups if required. These suggestions should be followed by leprosy advocates in future research to provide more detailed data on the interventions and their qualities.
Additionally, it is of utmost importance to improve educational services for the overall population in endemic countries to reduce fear, misinformation, and stigmatisation towards the disease as well as mental disorders that might be connected to it and those affected by it. This can further help to improve psychiatric care in India, since the low number of psychiatric centres limits the educational options available. As a result of persisting stigma, psychiatry is still not appropriately represented in the medical training programmes in India [45]. These recommendations are also applicable to other endemic countries lacking mental health services for PALs. However, national regulations differ, wherefore this review can serve as a baseline guideline to emphasise the benefits of effective psychosocial interventions and their effectiveness.
Furthermore, it is important to emphasise the impact of technology-based and other novel interventions, whereby some have been introduced here. However, other approaches that have been proven effective in managing depression and anxiety, such as art-based therapy or storytelling, could be a low-resource alternative to reach more PALs [35,36]. Digitalisation brings more advantages as apps and internet-based tools can further increase access to reach people who might live too far from medical centres [46]. Overall, it is important to consider innovative approaches that have been proven effective in similar settings, as they could be a useful asset in improving the mental wellbeing and QoL of PALs.
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