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Changing stigmatisation of leprosy: an exploratory, qualitative life course study in Western Nigeria
  1. Bassey Ebenso1,
  2. James Newell2,
  3. Nick Emmel3,
  4. Gbenga Adeyemi4,
  5. Bola Ola5
  1. 1 Nuffield Centre for International Health and Development, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  2. 2 Nuffield Centre for International Health and Development, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  3. 3 Social Sciences Building, University of Leeds, School of Sociology and Social Policy, Leeds, UK
  4. 4 Faculty of Social Sciences, Federal University Oye Ekiti, Department of Demography and Social Statistics, Ekiti, Nigeria
  5. 5 Faculty of Clinical Sciences, Lagos State University, Department of Behavioural Medicine, Ikeja, Nigeria
  1. Correspondence to Dr Bassey Ebenso; b.e.ebenso{at}leeds.ac.uk

Abstract

Introduction Renewed interest in health-related stigma has invigorated calls to understand factors and processes underlying stigma. However, few empirical studies explore the influences of structural discrimination and moral status on leprosy-related stigma. We investigated how sociocultural context and organisational policies and practices influenced the connotations of leprosy, sources of stigma and the changing social responses to leprosy in Western Nigeria.

Methodology Ethnographic research conducted between 2008 and 2012 combined documents review with life history interviews of 21 individuals affected by leprosy and semistructured interviews with 26 community members in Western Nigeria. Interviews were audiotaped, transcribed verbatim and coded. Theoretical frameworks used to deepen social understandings of leprosy and responses to stigma included Link’s and Phelan’s conceptualisation of stigma and the concepts of structural discrimination and moral status.

Results Findings showed that connotations of leprosy in Yorùbá culture included the following: (i) perception of leprosy as the most shameful and detested condition and (ii) symbolic association with filth and immoral behaviour that is dishonouring to Yorùbá identity. Secondary analysis of archival materials revealed four sources of stigma: cultural beliefs about leprosy, health promotion messages embedded in primary school books, religious teachings about leprosy and campaigns conducted by the leprosy service in 1950s. Contrary to the portrayal of Yorùbá attitudes to leprosy as entirely negative, we identified that people affected by leprosy were creating new life courses to counter existing cultural accounts of marginalisation. Emerging narratives of inclusion outlined five facilitators of acceptance namely, antileprosy treatment, good moral character, supportive family networks, livelihoods, and contribution to community survival.

Conclusion Gaps highlighted by this study suggest that the global target of zero stigma and discrimination of leprosy will remain unattainable without better understanding of cultural significance(s) of leprosy and the local sources and underlying drivers of stigma that are crucial for developing context-specific stigma reduction interventions.

  • leprosy
  • public health
  • health education and promotion
  • life-course approach
  • health-related stigma
  • Nigeria

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Handling editor Stephanie M Topp

  • Contributors BE, JN and NE together conceived and designed the study. BE and GA conducted all interviews. All authors contributed to interpretation of data. BE led the writing of this paper with contributions from JN, NE, GA and BO. All authors read and approved the final version of the manuscript.

  • Funding This article presents independent research funded through the Overseas Research Students Awards (ORSAS) and International Research Scholarships from the University of Leeds, and a fieldwork grant from The Leprosy Mission. The funders had no involvement in the study design; collection, management, analysis and interpretation of data, writing of the report, and the decision to submit the report for publication.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval This study was approved by the University of Leeds Research Ethics Committee (Ethics Reference No: AREA 08-053) and the National Health Research Ethics Committee of the FMOH, Nigeria (Protocol Approval No: NHREC/01/01/2007-31/07/ 2009b). Informed consent was gained from all participants.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement At the time of data collection, it was not the norm for qualitative evaluations to provide data sharing and as such participants did not give their consent to data sharing. We are, therefore, unable to provide access to raw data.

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