The psychosocial impacts of skin-neglected tropical diseases (SNTDs) as perceived by the affected persons: A systematic review

Dasha L Alderton, Caroline Ackley and Mei L Trueba

PLOS Neglected Tropical Diseases, 2024, vol. 18, issue 8, 1-28

Abstract: Background: Neglected Tropical Diseases (NTDs) disproportionately affect marginalised groups within impoverished communities, conferring devastating physical, financial and psychosocial effects. Skin-NTDs (SNTDs) are uniquely stigmatising due to their visible nature, rendering affected individuals vulnerable to psychosocial risk and the associated decline in social participation, quality of life and mental health. In response to knowledge gaps identified by current global efforts for integrated control of SNTDs this review gathers existing evidence on the psychosocial effects of SNTDs, with consideration given to the influence of gender. Methods: The study protocol is registered with PROSPERO (CRD42022336676). Data was collected from Embase, Global Health, Medline and Web of Science, with additional articles identified through Google Scholar and bibliography tracking. Qualitative studies published in English between 2005 and 2024 reporting men’s and women’s experiences with SNTDs were searched. Appropriate data from each included study were inputted into NVivo software to facilitate thematic synthesis. Descriptive and analytic themes were generated through line-by-line coding using an inductive approach. Results: 27 articles of high and moderate quality were included. They pertained to buruli ulcer, cutaneous leishmaniasis, leprosy, lymphatic filariasis, tungiasis, onchocerciasis, schistosomiasis and podoconiosis. Men and women across SNTDs and contexts reported debilitating physical symptoms which impaired their ability to work, socialise and carry out usual daily activities. Some felt (at least initially) well supported by partners and relatives, whereas most experienced avoidance, abandonment and even violence, with women incurring worse SNTD-related social consequences. Many men and most women experienced stigma, with discriminatory behaviours largely attributed to fear of infection, decreased ability to perform gender-specific daily activities, and the perceived association between SNTDs and sinfulness. Self-reported impacts of SNTDs on men’s and women’s mental wellbeing included low mood, anxiety, low self-esteem, and suicidal ideation. Disease-specific knowledge, early treatment, social support, and disease acceptance were mentioned as protective factors. Conclusion: SNTDs cause significant psychosocial harms, particularly for women. Implementing myth-busting and contact-based educational campaigns and improving access to treatment and to livelihood opportunities and social protection schemes for men and women with a SNTD will help prevent and mitigate these. Author summary: Neglected Tropical Diseases (NTDs) mostly affect marginalised groups in deprived communities, and are known to have harmful physical, financial, social, and mental health consequences. Skin-NTDS (SNTDs) are particularly damaging because they are noticeable, rendering the affected individuals vulnerable to discrimination. This systematic review of the published literature aims to understand the socio-economic and emotional effects of SNTDs and how these are influenced by individuals’ gender. Our review includes 27 studies. Men and women experience physical suffering which reduces their ability to work, socialise, and carry out usual daily activities. Some feel well supported by partners, friends, and family, at least initially, while most are avoided, abandoned, and even suffer from verbal and physical violence, particularly women. The reported impacts of SNTDs on individuals’ emotional wellbeing include low mood, anxiety, low self-esteem, and suicidal thoughts. Early treatment, disease knowledge, social support networks, and disease acceptance were mentioned as protective factors. We conclude that SNTDs increase individuals’ psychosocial suffering, with women being particularly at risk. Ensuring treatment access and socio-economic support for men and women with SNTDs and developing culturally appropriate educational interventions designed to foster more positive attitudes towards people with SNTDs will help prevent and reduce these harms.

Date: 2024
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DOI: 10.1371/journal.pntd.0012391

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