Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

Abstract

Objective The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. Introduction Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. Inclusion criteria This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. Methods The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. Results The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient’s perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. Conclusions The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. Systematic review registration number PROSPERO Registration number: CRD42021243223