1. Experiences of living with leprosy: A systematic review and qualitative evidence synthesis.
- Author
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Abdul Rahman, Norana, Rajaratnam, Vaikunthan, Burchell, George L., Peters, Ruth M. H., and Zweekhorst, Marjolein B. M.
- Subjects
HANSEN'S disease ,MYCOBACTERIUM leprae ,SOCIAL impact ,SOCIAL attitudes ,IMPLICIT attitudes - 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 Author summary: Leprosy is a chronic, granulomatous disease caused by Mycobacterium leprae and is a major cause of preventable disability. As a result of their disfigurements and deteriorating physical impairments, the leprosy-affected individuals experienced negative social attitudes, stigma, isolation, and discrimination, thus, impacting their lives and relationships with others. Due to the chronicity of leprosy, studying the lived experience of the affected individuals will allow us a deeper understanding of the effects of the disease, how they seek help and adhere to its treatment, and cope with the disease. We conducted a systematic literature review involving 49 articles, highlighting the four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were not new, but they were consistent across the included studies from a patient's perspective. Our findings contributed to establishing the biopsychosocial and economic approach for understanding what leprosy-affected people experience by considering changes in their biophysical, sociocultural, psychological dynamics, and economics. It served as a guide for delivering care and treatment to these people. The information will be helpful to the researchers, health professionals, decision, and policymakers to plan and tailor their support for these individuals, their families, and the community. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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