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What Matters Most? Capturing culture-specific health-related stigma dynamics

The What Matters Most project aims to increase insights in (generic) approaches that are culturally sensitive to assess and reduce stigma related to leprosy, lymphatic filariasis and depressive disorders in Indonesia, Nepal and Nigeria.

Stigma plays a role in a range of health conditions, including leprosy, lymphatic filariasis (LF) and depressive disorders. People with one of these conditions not only have to deal with the illness, but typically also have to deal with negative attitudes and behaviours of others. Recent research on health-related stigma recognises that stigma is a complex social phenomenon, but also elucidate the similarities between manifestations and consequences of stigma across conditions. Though these developments are promising for generic approaches, present upscaling of generic approaches is hampered by gaps in knowledge.

Culture can shape the way stigma is experienced by individuals in profound ways. Yang et al. have proposed that the effects of cultural context on stigma can be understood by elucidating the interactions that ‘matter most’ and that define ‘full status’ within a cultural group. Yang et al. defined ‘What Matters Most’ (WMM) as a cultural mechanism that signifies meaningful participation in the community. For example, accumulation of financial resources was identified being ‘WMM’ among Chinese immigrants in New York City (source) while among Men in Botswana the essence of manhood included fulfilment of male responsibility via being a capable provider for the family and maintaining social status (source). Stigmatized conditions such as leprosy can threaten WMM and thus worsen health-related stigma.

In this project we are investigating how the influence of culture on stigma can be taken on board in (generic) approaches to improve assessments and approaches to reduce stigma related to leprosy, LF and depressive disorders in Indonesia, Nepal and Nigeria. We are addressing this by:

  • Generating insight into ‘What Matters Most’ and what defines ‘full status’ to men and women (separately) with stigmatized conditions, their family members and health professionals.
  • Contributing to the assessment of stigma via:
    • Recommendations on how to modify existing stigma measures to incorporate cultural dynamics and how to develop add-on items to enhance cultural sensitivity of generic approaches to reduce stigma (e.g. counselling)
    • Operationalize WMM for new brief “cultural specific” modules and generate ideas for add-on items or modules to existing effective stigma reduction initiatives.
  • Providing a roadmap for others who want to apply WMM.

Through interviews we identify ‘What Matters Most’ to people with a stigmatized condition, their family and health care professionals. ‘We apply a novel perspective of operationalizing ‘culture’ in the study of stigma, by operationalising WMM into items to improve exiting measures and to develop new brief modules and to provide recommendations for interventions. The project applies a quantitative approach (assessing psychometric properties) to pilot and test the scales.

This approach will enable better planning of how to increase participants’ ability to engage in core lived daily activities central to their culture, which is fundamental to recovery from stigma.

Athena’s role
The team at Athena coordinates the project and co-leads the research activities including training and preparation, data collection, integration and dissemination of findings in Indonesia, Nepal and Nigeria.

Project details