HIV-Related Stigma and Discrimination in Jamaica: A Policy Review
POLICY ISSUES RELATED TO
HIV IN JAMAICA
Stigma Index Study (2011)
Review of the National HIV-related Discrimination Reporting and Redress System (2013)
Situational Analysis of Patient Confidentiality within the Public Health Care Sector (2013)
National Workplace Policy (2013)
Originally presented at the first
PHDP Training of People Living with HIV Peer Leaders Advocacy Workshop
MODULE 17
Advocacy
THE STIGMA INDEX (2013)
Methodology
Conducted August-September 2011
Across all four health regions
Data collection using people living with
HIV as interviewers and data entry
clerks:
Face-to-face survey
Focus groups/case studies
Demographic Profile of Respondents
Sample: N=509
Sex: 37% males and 62% females; 3 transgender (0.6%)
Age: 8% <24 years; 9% aged 25-29; 34% aged 30-39; 29%
aged 40-49; 19% 50+
Marital status: 47% single; 28% married; 20% in a
relationship
Education: 61% completed secondary school; 26%
primary school
Household size: 48% 1-3 persons; 35% 4-6 persons
Few key populations identified:
87% identified with no key population group
Summary
Stigma and Discrimination Experience
One-third have experienced some form of
discrimination in their communities
High levels of internalised stigma
Blame oneself, guilt, shame
Have experienced social exclusion and self isolation
Fears
Gossip, verbal insults, physical harassment, physical assault
Most fearful of neglect
Experience psychological pressure and sexual
rejection
Summary
2
Knowledge of support for people living with HIV
Over one-third members of support organisations
Only 9% involved in efforts to develop legislation, policies, or
guidelines
Close to half believe they cannot influence decisions in any area
Disclosure
Most are likely to disclose status to husband/wife/partner; adult
family member; healthcare worker; social worker
Least likely to disclose to friends/neighbours, religious leaders,
community leaders, co-workers
Reactions tend to be very supportive, with the exception of
friends/neighbours
Confidentiality
Medical records
52% not sure if medical record kept
confidential
16% felt it was clear that medical record
was not kept confidential
Healthcare professionals
50% felt healthcare professionals never
told others about status
39% not sure
Percentage of people living with HIV who report ability
to influence decisions in any area (N=509)
What support organisations should be doing
to address stigma and discrimination (N=488)
REVIEW OF THE NATIONAL
HIV-RELATED
DISCRIMINATION
REPORTING AND REDRESS
SYSTEM (2013)
Context
The extent and form of discrimination
experienced by people living with HIV is not
well documented.
The extent and form of discrimination
experienced
by people generally
, is not well
documented.
Discrimination is widespread and pervasive,
but some discriminatory actions have become
culturally acceptable and so they do not
have the effect of causing the
“injured”
individual any offence.
The Review
Funded by the USAID- and PEPFAR-funded Health Policy Project
and supported by UNAIDS under the guidance of a steering
committee led by the National HIV/STI Programme and JN+.
Scope of Work:
Conduct a gap analysis of the Redress System (NHDRRS)
Make recommendations to address gaps and weaknesses
Make recommendations to expand the system to include key populations
The Process:
Literature review (reports, evaluations, technical documents)
Analysis of the legal and policy framework
Meetings and consultations with key stakeholders
SWOT analysis
Stakeholder feedback
Recommendations (1)
The NHDRRS should be integrated into the
Organisational Structure of JN+:
The NHDRRS will become the Client Complaints Arm of JN+.
It would become part of the “member services” portfolio.
A multi-sectoral
Complaints Monitoring and Reporting Committee
should be established as the accountability arm of the system.
A cooperation arrangement should be entered into between
JN+ and other HIV service organisation for resourcing the system.
(
Example the PSOJ/JEA/JBA/JCC Model).
Example the PSOJ/JEA/JBA/JCC Model).
Day-to-day issues such as receiving complaints, setting
appointments, and liaising with redress partners will be handled
by a JN+ officer who will report to the committee. Volunteers,
including attorneys who provide pro bono legal services, will also
be part of the Monitoring and Reporting Committee.
What a Redress System Should Do
Suggestions from focus group:
“Provide education and sensitization.”
“Influence policies and legislation.”
“Undertake or drive law reform and
reforms in administrative practices.”
“Court action.”
“Provide legal assistance.”
Proposed Structure of the NHDRRS
Recommendations (2)
Strengthen the technical capacity of JN+
The review recommends:
An officer with legal or public policy/public administration skills.
An officer with database management, statistical, and reporting
skills.
Data from focus group of people living with HIV
(March 8, 2013)
:
Counseling skills
Legal skills (including knowledge of international human rights)
Policy advocacy skills
Interpersonal skills
Knowledge of people living with HIV and gender equality issues
Recommendations (3)
Use mobile digital technology
NHDRRS needs an IMIT database
Lobby for anti-discrimination legislation
Conclusions
It is not sustainable to have a system dedicated exclusively to
dealing with HIV-related discrimination.
The discrimination complained of by people living with HIV can
take place almost in relation to any person, based on almost
any attribute: gender, race, age, abode.
It is best to work through existing mechanisms which already
have broad mandates.
Public education and sensitisation are essential.
Cooperation between JN+ and other service organisations is
important given limited external resources and the broad
reach of the NHDRRS.
SITUATION ANALYSIS OF
PATIENT CONFIDENTIALITY
WITHIN THE PUBLIC HEALTH
CENTRE
Methodology
A qualitative approach:
Focus group discussions and interviews
from key stakeholders
Data collection from June 10 - July 5,
2013:
Six focus group discussions
Ten interviews
Findings
1.
Definition of confidentiality
2.
What constitutes a breach
3.
Provider training issues
4.
Health systems considerations (six sub-
headings)
5.
Framework for addressing breaches
6.
Stigma and discrimination and its connection
to confidentiality
7.
Effects of breaches
8.
Ethical dilemmas
Recommendations (1)
1.
Leadership and Governance
a.
Prepare one policy document on patient
confidentiality for the health services.
b.
Undertake a revision of the client
c
omplaint
m
echanism.
Recommendations (2)
2.
Provider Training on Confidentiality
a.
Explore fully the role of professional bodies in training
and enforcement of the issues surrounding patient
confidentiality.
b.
Explore and integrate avenues of pre-service training
on patient confidentiality.
c.
Revise the human resources approach to orientating
and sensitising new staff on the issue surrounding
patient confidentiality and develop strategies to
reorient existing employees on preserving and
maintaining patient confidentiality.
Recommendations (3)
3.
Quality Assurance
a.
Develop and institute quality indicators
specific to confidentiality per key groups
with reporting schedules outlined for
delivery in high-level leadership and
governance forums.
b.
Ensure adherence to existing policy and
procedures aimed at facilitating patient
confidentiality.
Recommendations (4)
4. Infrastructure
a.
Continued infrastructural renovations to health
facilities to facilitate improved privacy particular in
A&E (emergency) and pharmacy departments.
5.
Regulatory Body for Advocacy and Monitoring
a.
Explore the establishment of an independent
regulatory body to advocate, monitor, highlight, and
report confidentiality concerns. Bringing public
attention both local (civil society) and international
to the matter.
Recommendations (5)
6. Research
a.
Explore further the issues of confidentiality in the health
sector with service users and employ the use of
observation of services.
7.
Management of Health Information System
a.
Convene a panel of experts to discuss the intricacies of
how the Ministry of Health will address the paper-based
storage of health records.
b.
Either enforce the regulations and procedures regarding
the transfer of health records or widen the categories of
person who can transfer health records and stipulate and
enforce the safeguarding of the information being
transferred.
Recommendations (6)
8. Integrated Health Service Delivery
a.
Clarify the concept and breath of the
treatment team.
b.
Examine the issues involved in providing care
to providers in a confidential manner and
explore strategies to safeguard their
information.
c.
Continue the process of integrating clinics
and limit the ability to deduce and conclude
information from existing systems and
structures.
Recommendations (7)
9. Human Resources in Health
a.
Conduct a review of the documented roles
and functions and the actual day-to-day
activities of the following categories of staff:
security guards, porters, and district
constables.
b.
Establish guidelines that stipulate the
locations within health facilities where
student employees can be placed. Areas
that limit access to health information are
recommended.
Recommendations (8)
10. Health Information System
a.
Explore the feasibility of incorporating an
electronic-based system with the necessary
security features to limit access to patient
information especially for larger health centres.
b.
Conduct a patient flow analysis that examines
the movement of patient health records and
other patient information within health facilities
and determine the number of and categories of
persons (health and non-health) who handle
patient information and their suitability to access
such records.
WORKPLACE POLICY
A Rights Based Approach to
HIV and AIDS in the Workplace
HIV Unit, Occupational Safety and
Health Department
Ministry of Labour and Social Security
Background
HIV, which leads to AIDS, impacts the
workforce nationally, regionally, and
internationally.
The most affected persons are those
aged 15-49 years.
Locally this age range accounts for
more than 60% of reported HIV cases.
HIV/AIDS: A Workplace Issue
In 2007, AIDS was one of the leading
causes of death in the Caribbean.
Globally, and within the Caribbean
region, the highest number of AIDS
cases occur in the 15-49 age group.
The Government’s Response to HIV Led by the
Ministry of Labour and Social Security
In 2007 the National Workplace Policy on HIV
and AIDS was developed.
In 2010 the policy was approved as Green
Paper by both houses of Parliament.
In 2013 the policy was approved as White
Paper by both houses of Parliament.
Key Principles:
Key Principles:
International Labour Organisation Code
International Labour Organisation Code
Why Focus on Workers?
When adults are well enough to work
When adults are well enough to work
household well-being improves and
household well-being improves and
health costs are reduced. Companies
health costs are reduced. Companies
incur fewer costs from absenteeism,
incur fewer costs from absenteeism,
retraining, and recruitment.
retraining, and recruitment.
Source: Joint United Nations Programme on HIV/AIDS (UNAIDS). 2012.
Together We
Will End AIDS
. Geneva: UNAIDS.
What can we do in the workplace?
Reduce the impact of the epidemic on
business.
Reduce personal risk to infection.
Reduce stigma and discrimination against
workers living with and affected by HIV and
AIDS and ensure their
human rights in the
workplace.
Contribute to the goal of universal access to
prevention, treatment, care, and support.
Conducted in 2011 and 2013, this study in Jamaica explores the stigma, discrimination, and support experiences of individuals living with HIV. Findings highlight high levels of internalized stigma, experiences of exclusion and harassment, and challenges in disclosure. The study also assesses support systems and the influence of affected individuals on policy decisions.
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POLICY ISSUES RELATED TO HIV IN JAMAICA Stigma Index Study (2011) Review of the National HIV-related Discrimination Reporting and Redress System (2013) Situational Analysis of Patient Confidentiality within the Public Health Care Sector (2013) National Workplace Policy (2013) Originally presented at the first PHDP Training of People Living with HIV Peer Leaders Advocacy Workshop MODULE 17 Advocacy
Methodology Conducted August-September 2011 Across all four health regions Data collection using people living with HIV as interviewers and data entry clerks: Face-to-face survey Focus groups/case studies
Demographic Profile of Respondents Sample: N=509 Sex: 37% males and 62% females; 3 transgender (0.6%) Age: 8% <24 years; 9% aged 25-29; 34% aged 30-39; 29% aged 40-49; 19% 50+ Marital status: 47% single; 28% married; 20% in a relationship Education: 61% completed secondary school; 26% primary school Household size: 48% 1-3 persons; 35% 4-6 persons Few key populations identified: 87% identified with no key population group
Summary Stigma and Discrimination Experience One-third have experienced some form of discrimination in their communities High levels of internalised stigma Blame oneself, guilt, shame Have experienced social exclusion and self isolation Fears Gossip, verbal insults, physical harassment, physical assault Most fearful of neglect Experience psychological pressure and sexual rejection
Summary 2 Knowledge of support for people living with HIV Over one-third members of support organisations Only 9% involved in efforts to develop legislation, policies, or guidelines Close to half believe they cannot influence decisions in any area Disclosure Most are likely to disclose status to husband/wife/partner; adult family member; healthcare worker; social worker Least likely to disclose to friends/neighbours, religious leaders, community leaders, co-workers Reactions tend to be very supportive, with the exception of friends/neighbours
Confidentiality Medical records 52% not sure if medical record kept confidential 16% felt it was clear that medical record was not kept confidential Healthcare professionals 50% felt healthcare professionals never told others about status 39% not sure
Percentage of people living with HIV who report ability to influence decisions in any area (N=509) Area of influence N (%) Legal/rights affecting people living with HIVs Local projects intended to benefit people living with HIV National programmes/projects intended to benefit people living with HIV Local government policies affecting people living with HIV National government policies affecting people living with HIV International agreements/treaties Cannot influence decisions in any area 146 (31) 102 (21) 84 (18) 64 (13) 50 (10) 42 (08) 232 (46)
What support organisations should be doing to address stigma and discrimination (N=488) 4% Raise awareness/knowledge about AIDS Educate people living with HIV about living with HIV 20% 24% Advocate for rights of people living with HIV Provide support to people living with HIV 25% 25% Advocate for rights of most at-risk populations
REVIEW OF THE NATIONAL HIV-RELATED DISCRIMINATION REPORTING AND REDRESS SYSTEM (2013)
Context The extent and form of discrimination experienced by people living with HIV is not well documented. The extent and form of discrimination experienced by people generally, is not well documented. Discrimination is widespread and pervasive, but some discriminatory actions have become culturally acceptable and so they do not have the effect of causing the injured individual any offence.
The Review Funded by the USAID- and PEPFAR-funded Health Policy Project and supported by UNAIDS under the guidance of a steering committee led by the National HIV/STI Programme and JN+. Scope of Work: Conduct a gap analysis of the Redress System (NHDRRS) Make recommendations to address gaps and weaknesses Make recommendations to expand the system to include key populations The Process: Literature review (reports, evaluations, technical documents) Analysis of the legal and policy framework Meetings and consultations with key stakeholders SWOT analysis Stakeholder feedback
Recommendations (1) The NHDRRS should be integrated into the Organisational Structure of JN+: The NHDRRS will become the Client Complaints Arm of JN+. It would become part of the member services portfolio. A multi-sectoral Complaints Monitoring and Reporting Committee should be established as the accountability arm of the system. A cooperation arrangement should be entered into between JN+ and other HIV service organisation for resourcing the system. (Example the PSOJ/JEA/JBA/JCC Model). Day-to-day issues such as receiving complaints, setting appointments, and liaising with redress partners will be handled by a JN+ officer who will report to the committee. Volunteers, including attorneys who provide pro bono legal services, will also be part of the Monitoring and Reporting Committee.
What a Redress System Should Do Suggestions from focus group: Provide education and sensitization. Influence policies and legislation. Undertake or drive law reform and reforms in administrative practices. Court action. Provide legal assistance.
Proposed Structure of the NHDRRS Ministry of Labour and Social Security Police Civilian Oversight Authority Pharmacy Council of Jamaica Medical Council of Jamaica Complaints Monitoring and Reporting Committee JN+ Nursing Council of Jamaica Secretariat Office of the Public Defender Public Services Commission Ministry of Health and RHA Client Complaints Mechanism Mediation Other
Recommendations (2) Strengthen the technical capacity of JN+ The review recommends: An officer with legal or public policy/public administration skills. An officer with database management, statistical, and reporting skills. Data from focus group of people living with HIV (March 8, 2013): Counseling skills Legal skills (including knowledge of international human rights) Policy advocacy skills Interpersonal skills Knowledge of people living with HIV and gender equality issues
Recommendations (3) Use mobile digital technology NHDRRS needs an IMIT database Lobby for anti-discrimination legislation
Conclusions It is not sustainable to have a system dedicated exclusively to dealing with HIV-related discrimination. The discrimination complained of by people living with HIV can take place almost in relation to any person, based on almost any attribute: gender, race, age, abode. It is best to work through existing mechanisms which already have broad mandates. Public education and sensitisation are essential. Cooperation between JN+ and other service organisations is important given limited external resources and the broad reach of the NHDRRS.
SITUATION ANALYSIS OF PATIENT CONFIDENTIALITY WITHIN THE PUBLIC HEALTH CENTRE
Methodology A qualitative approach: Focus group discussions and interviews from key stakeholders Data collection from June 10 - July 5, 2013: Six focus group discussions Ten interviews
Findings 1. Definition of confidentiality 2. What constitutes a breach 3. Provider training issues 4. Health systems considerations (six sub- headings) 5. Framework for addressing breaches 6. Stigma and discrimination and its connection to confidentiality 7. Effects of breaches 8. Ethical dilemmas
Recommendations (1) 1. Leadership and Governance a. Prepare one policy document on patient confidentiality for the health services. b. Undertake a revision of the client complaint mechanism.
Recommendations (2) 2. Provider Training on Confidentiality Explore fully the role of professional bodies in training and enforcement of the issues surrounding patient confidentiality. Explore and integrate avenues of pre-service training on patient confidentiality. Revise the human resources approach to orientating and sensitising new staff on the issue surrounding patient confidentiality and develop strategies to reorient existing employees on preserving and maintaining patient confidentiality. a. b. c.
Recommendations (3) 3. Quality Assurance a. Develop and institute quality indicators specific to confidentiality per key groups with reporting schedules outlined for delivery in high-level leadership and governance forums. b. Ensure adherence to existing policy and procedures aimed at facilitating patient confidentiality.
Recommendations (4) 4. Infrastructure Continued infrastructural renovations to health facilities to facilitate improved privacy particular in A&E (emergency) and pharmacy departments. a. 5. Regulatory Body for Advocacy and Monitoring Explore the establishment of an independent regulatory body to advocate, monitor, highlight, and report confidentiality concerns. Bringing public attention both local (civil society) and international to the matter. a.
Recommendations (5) 6. Research Explore further the issues of confidentiality in the health sector with service users and employ the use of observation of services. Management of Health Information System a. 7. Convene a panel of experts to discuss the intricacies of how the Ministry of Health will address the paper-based storage of health records. a. Either enforce the regulations and procedures regarding the transfer of health records or widen the categories of person who can transfer health records and stipulate and enforce the safeguarding of the information being transferred. b.
Recommendations (6) 8. Integrated Health Service Delivery a. Clarify the concept and breath of the treatment team. b. Examine the issues involved in providing care to providers in a confidential manner and explore strategies to safeguard their information. c. Continue the process of integrating clinics and limit the ability to deduce and conclude information from existing systems and structures.
Recommendations (7) 9. Human Resources in Health a. Conduct a review of the documented roles and functions and the actual day-to-day activities of the following categories of staff: security guards, porters, and district constables. b. Establish guidelines that stipulate the locations within health facilities where student employees can be placed. Areas that limit access to health information are recommended.
Recommendations (8) 10. Health Information System a. Explore the feasibility of incorporating an electronic-based system with the necessary security features to limit access to patient information especially for larger health centres. b. Conduct a patient flow analysis that examines the movement of patient health records and other patient information within health facilities and determine the number of and categories of persons (health and non-health) who handle patient information and their suitability to access such records.
A Rights Based Approach to HIV and AIDS in the Workplace HIV Unit, Occupational Safety and Health Department Ministry of Labour and Social Security
Background HIV, which leads to AIDS, impacts the workforce nationally, regionally, and internationally. The most affected persons are those aged 15-49 years. Locally this age range accounts for more than 60% of reported HIV cases.
HIV/AIDS: A Workplace Issue In 2007, AIDS was one of the leading causes of death in the Caribbean. Globally, and within the Caribbean region, the highest number of AIDS cases occur in the 15-49 age group.
The Governments Response to HIV Led by the Ministry of Labour and Social Security In 2007 the National Workplace Policy on HIV and AIDS was developed. In 2010 the policy was approved as Green Paper by both houses of Parliament. In 2013 the policy was approved as White Paper by both houses of Parliament.
Key Principles: International Labour Organisation Code
Why Focus on Workers? When adults are well enough to work household well-being improves and health costs are reduced. Companies incur fewer costs from absenteeism, retraining, and recruitment. Source: Joint United Nations Programme on HIV/AIDS (UNAIDS). 2012. Together We Will End AIDS. Geneva: UNAIDS.
What can we do in the workplace? Reduce the impact of the epidemic on business. Reduce personal risk to infection. Reduce stigma and discrimination against workers living with and affected by HIV and AIDS and ensure their human rights in the workplace. Contribute to the goal of universal access to prevention, treatment, care, and support.
