Illness perceptions of leprosy-cured individuals in Surinam with residual disfigurements – “I am cured, but still I am ill”

Mark A.C. van Haaren, Melinda Reyme, Maggie Lawrence, Jack Menke, Ad A. Kaptein

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Abstract

Objective: Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model.
Design: Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed.
Main outcome measures: Patients’ B-IPQ scores were compared with samples of patients with other (chronic) illnesses, and with health care providers completing the questionnaire as if they were visibly disfigured patients. Quotations from the semi-structured interviews were used to contextualise the illness perceptions.
Results: Patients’ B-IPQ scores reflected the chronic nature of leprosy and were comparable with those with other chronic illnesses. Health care providers perceived leprosy to have a greater negative impact than did the patients. Perceived understanding of causes differed considerably between patients and health care providers.
Conclusion: Leprosy continues to be experienced as an illness with major psychological and social consequences such as stigmatisation, even after biomedical cure. Interventions that target patients, health care providers, and society at large may help reduce perceived shame and stigma.
The CSM is a helpful theoretical model in studying this population.
Original languageEnglish
Pages (from-to)117-127
Number of pages11
JournalChronic Illness
Volume13
Issue number2
Early online date5 Jul 2016
DOIs
Publication statusPublished - Jun 2017

Keywords

  • Leprosy
  • illness perceptions
  • chronic illness
  • stigma
  • Common Sense Model

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