Studying Viral Hepatitis B Stigma using the ALLIES Approach: A Mixed Methods Design

This research proposal investigates the impact of cultural beliefs and stigma on healthcare access and treatment adherence for individuals with chronic hepatitis B. It utilizes a mixed methods design, incorporating both qualitative and quantitative approaches, guided by the ALLIES framework.

The ALLIES Approach

The ALLIES approach serves as the foundation for this research, focusing on collaboration and empowerment of communities affected by viral hepatitis B. Each component of ALLIES translates into specific research activities:

  • Acknowledge: Recognize the existence of stigma surrounding hepatitis B and its detrimental impact on healthcare access and treatment adherence.
  • Listen: Conduct in-depth interviews and focus groups with individuals living with chronic hepatitis B to understand their lived experiences with stigma and cultural beliefs.
  • Learn: Analyze qualitative data to identify specific cultural beliefs and stigma-related barriers that hinder healthcare access and treatment adherence.
  • Inspire: Develop educational materials and interventions informed by the qualitative findings, aiming to raise awareness about hepatitis B and promote empathy towards individuals living with the virus.
  • Empower: Engage community stakeholders (e.g., healthcare providers, community leaders, patient advocacy groups) in knowledge dissemination and intervention implementation to empower individuals with chronic hepatitis B to advocate for themselves and manage their condition effectively.
  • Sustain: Develop a long-term plan to ensure ongoing support and resource availability for individuals with chronic hepatitis B and to maintain a sustainable, non-stigmatizing environment.

Mixed Methods Design

This study will employ a mixed methods design, combining qualitative and quantitative approaches:

  • Qualitative Methods (Phase 1):
    • Conduct in-depth interviews with individuals diagnosed with chronic hepatitis B to explore their experiences with stigma, healthcare access, and treatment adherence.
    • Organize focus groups with community members to understand how cultural beliefs influence perceptions of hepatitis B and access to healthcare resources.
  • Quantitative Methods (Phase 2):
    • Develop a survey instrument based on the qualitative findings to assess the prevalence and nature of stigma experienced by individuals with hepatitis B.
    • Utilize standardized scales to measure healthcare access and treatment adherence among participants.

Data Analysis

  • Qualitative data : Interviews and focus groups will be audio-recorded, transcribed, and analyzed thematically to identify key themes related to stigma, cultural beliefs, healthcare access, and treatment adherence.
  • Quantitative data : Statistical analysis will be used to evaluate the prevalence and severity of stigma, the association between stigma and healthcare access/adherence, and the effectiveness of educational interventions developed based on qualitative findings.

Expected Outcomes

This comprehensive approach, guided by the ALLIES framework, aims to:

  • Gain in-depth understanding of how cultural beliefs and stigma impact individuals with chronic hepatitis B.
  • Identify specific barriers to healthcare access and treatment adherence.
  • Develop culturally appropriate and evidence-based interventions to reduce stigma, improve healthcare access, and promote treatment adherence.
  • Empower individuals and communities to manage chronic hepatitis B effectively within a supportive environment.
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Please we really await the outcome of this research
As I have seen a lot of stigma being melted at chronic hepatitis b individual of a recent i witness medical personal refusing to put an iv access for a patient cos he was hbv reactive and most of time medical people condemned them for death even before time

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Hi @Harrison,
Thanks for sharing this wonderful project with us. I can’t wait to read about your findings. Very interesting topic to look into. Best, Bansah1

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@Sent-d It really is on the increase, a lot of people including health personnel stigmatize without even knowing it. I will definitely post the link here when we are done.

I sure will @Bansah1, thank you.

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The stigma for hepatitis b individual is under reported and nothing is really being done about it

G’day Sent-d –many people are working to reduce hepatitis B stigma, but I know on a personal level it may not feel like it. The project from Harrison looks excellent – beautifully developed with the complexity needed to make change. Work is being done in Australia through the Centre for Social Research in Health in recording the amount of stigma experienced within different ethnic communities, and the HepB Foundation in the US has published much work about the issue. Political change is needed, and people like Thomas and Su and their willingness and courage to disclose having hepatitis B when advocating in national and global forums are essential to reducing stigma.

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Important work @Harrison, thanks for sharing.
It’s so important to remember that hepatitis B can have a significant impact on the lives of those affected, often due to the terrible stigma and discrimination they face. Despite comprehensive education, people living with hepatitis B can encounter severe challenges, including discrimination and difficulties in personal life and securing employment. These issues exacerbate stigma, self-discrimination, and reduce quality of life.
Greater compassion and clarity in medical communication are crucial. People with hepatitis B often receive insufficient explanations for their test results, which can make them feel even more uncertain and distressed.
The Hepatitis B Foundation, the Hepatitis B community, WHA, other groups and many people are working hard to improve these aspects and reduce stigma. We need to improve support and understanding to alleviate these hardships with a more compassionate approach.

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