Mainstreaming GIPA at Work Place and Communities

1
Mainstreaming GIPA at Work Place and Communities

• Presentation by
• Inviolata M. Mmbwavi
• National Coordinator/CEO - NEPHAK

2
The Denver Principles

• A refusal to be victims.
• w A request for support from all people
• w A plea against stigma and discrimination.
• w A call to all PLHAS to choose
• w To be involved in all AIDS forums.
• w To be responsible for their own sexual health
  and to inform their partners of their HIV/AIDS
  status.

3
Declaration of the Paris AIDS Summit

• At the 1994 Paris AIDS Summit, 42 national
  governments declared that the principle of
  greater involvement of people living with or
  affected by HIV/AIDS (GIPA) is critical to
  ethical and effective national responses to the
  epidemic.
• However, little has been done so far to make this
  principle a reality.

4
What is GIPA?

• At its most basic, GIPA means two important
  things
• recognizing the important contribution people
  infected or affected by HIV/AIDS can make in the
  response to the epidemic
• creating space within society for their
  involvement and active participation in all
  aspects of that response.

5
What is GIPA in Practice

• Recognizing the important contribution people
  infected or affected by HIV/AIDS can make in the
  response to the epidemic
• Creating space within the society for PLWHAs
  involvement and active participation in all
  aspects of the response to HIV/AIDS pandemic
• Space for individuals to
• Use their experience of living with or being
  affected by HIV/AIDS in the greater response to
  the epidemic
• Give human face and voice to be given to the
  pandemic in the minds of people not directly
  touched by it.

6
Core Human Rights

• A full and satisfying sexual and emotional
  health.
• Quality access to Health care and social service
  provision.
• Full explanations of medical procedures and risks
  and the right to choose or refuse treatment

7
Core HR Cont..

• Privacy and confidentiality of medical records
  and disclosure.
• To Live and Die in dignity.

8
Levels of Involvement

• Response can be made at all levels and in all
  sectors
• From individual to organizational
• Social and cultural
• Economic and political
• In particular the Paris declaration emphasizes
  the role of
• Networks of PLWHAs and Community based
  organizations

9
FOUR TYPES OF INVOLVEMENT

• 1. Access PLHWAs use services of health
  facilities eg access to treatment, counseling
• 2. Inclusion PLHWAs support the activities of
  the organization, either as support staff or as
  occasional volunteers
• 3. Participation PLHWAs formally provide
  HIV/AIDS services eg, as employees
• 4. Greater involvement PLHWAs directly design
  services and manage programs or organizations

10
A Pyramid of Involvement
Decision makers
Experts used as professionals
Implementers AOH, peer educators ..
Level of involvement
Speakers in conferences
Contributors public experience sharing ,
Target audience program mass beneficiaries
11
existing major constraints

• GIPA is not reflected in national policies and
  programmes in any concerted or large-scale way,
  and there is an almost total lack of mechanisms
  permitting or encouraging PWHAs' experiences,
  perceptions and skills to be considered. This is
  partly because no major global, regional or
  national campaigns have yet been carried out to
  raise awareness and understanding of GIPA.

12
Constraints (Cont.)

• Social, cultural and political environments,
  often characterized by high levels of denial,
  fear and stigmatization, are not conducive to the
  involvement of PWHAs.
• PWHAs are often in a difficult position,
  economically weak and having no structure that
  permits them to contribute to policy changes.

13
Constraint (Cont.)

• Both PWHAs and existing AIDS Programme managers
  and staff need education and skill-building in
  order for GIPA to have its optimum impact.

14
Challenges of implementing GIPA at higher levels

• Difficulty of acknowledging HIV status publicly
• Lack of organizations prepared to involve PWHAs
• Lack of skills and preparation for PWHAs
• The few PLHAs who are involved are getting
  fatigued in a context where there is no care and
  support facilities to reduce burn out and stress
  associated with PLHAs responsibilities
• Lack of recognition of the efforts of the few
  PLHAs who are genuinely involved and are ready to
  act as change agents and role models for
  prevention care and support.
• Lack of proper conditions for HIV-positive people
  within organizations (policies)
• Questions of sustainability of PWHAs when they
  succumb to illness and death.

15
What can be done?

• Document existing experiences and build on
  lessons learned
• Create a more enabling and supportive environment
  to weed out stigma and discrimination.
• Understand the needs and worries of the private
  sector on loss of productive staff
• Training and ongoing support for PWHAs actively
  involved in the response to the epidemic.
• Training and orientation for organizations on
  precepts of GIPA.

16
Why Involve PLWHAs?

• Promoting an environment in which people can
  access HIV?AIDS services including education
  freee fro the fear of stigma and discrimination.
• This is fundamental to HIV/AIDS prevention, care,
• support and treatment.
• Stigma separates those with HIV/AIDS from others,
• creating perceptions that HIV only affects
  specific
• populations

17
WHY INVOLVE PLWHAS

• GIPA helps to counter stigma
• PLWHAs testimonies help people to realize their
  own negative attitudes towards PLHWAs.
• PLWHAs try to persuade people that one can be
  HIV and lead a productive life as long as one
  lives positively.
• Create an environment in which public perceptions
  on HIV/AIDS are based on a more grounded
  understanding of the disease

18
WHY INVOLVE PLWHAS? ..

• Demonstrate the importance of knowing and
  accepting ones HIV status gt positive living
• Advocacy various issues
• A chance for PLWHAs to unleash their potential
  and earn a living
• Access to resources, care and treatment
• PLWAs enrich and personalize the program
• Demystify the experience of living with HIV/ AIDS

19
WHY INVOLVE PLWHAS? .

• GIPA makes the contributions of PLWAs in HIV/AIDS
  prevention programs recognizably invaluable.
• PLWHAs testimonies on living with HIV/AIDS add a
  powerful voice to HIV/AIDS messages.
• PLWHAs experiences also sound a warning for
  protection and importance of early knowledge of
  HIV status -VCT

20
EFFECTS ON PLWHAS INVOLVED IN ORGANIZATIONS

• Positive effects
• Peer counseling and support groups end
  self-isolation
• Increase in access to information on HIV/AIDS
  including treatment literacy, acceptance of HIV
  status, and enhance self-esteem
• Employment brings material benefits for PLWHAs
• Improve psychological health and contribute to
  better physical health
• GIPA has therapeutic effects for PLWHAs

21
EFFECTS ON ORGANIZATIONS

• Positive Effects
• Improve the understanding of HIV/AIDS issues by
  service providers and their attitudes towards
  PLWHAs
• Improve the understanding of HIV/AIDS treatment
  PLWA undergoing AART
• Increase the credibility of the organization with
  service users
• Catalyses the integration of advocacy for PLWHAs
  rights with services
• Effects of access and inclusion are limited
  because PLWHAs play only a marginal role in
  activities

22
IMPORTANT

• All kinds of involvement raises the PLWHAs self
  esteem and act as a motivation to live .
• When PLWHAs talk about their experiences they
• Gain courage to confront their difficulties
  head-on
• Get the relief of having shared their worries
  with others.
• Benefit to others
• Connects HIV/AIDS programs to the beneficiaries

23
SUPPORT

• An opportunity for the PLWHAS to meet and share
  their experiences and challenges of life
• Linkage with other HIV/AIDS service providers -
  eg medical, nutritional care, counseling and
  home based care.
• Local transport/lunch allowance
• Standardized honorarium after facilitating the
  activities.

24
LESSONS LEARNT

• GIPA works Some Comments from PLWHAs involved
  gtgtgt
• "I havent been to a psychologist but I have been
  helped by seeing a group of people in the same
  situation this has helped my self-esteem and
  increased my will to live.
• I thought I was alone but now I see my brothers
  and sisters, I guess I am better of. Anyway life
  has to continue..
• I feared ARVs, but now I see - they work.
• "I came to realize that they were normal people
  just like any other human being. I could not eat
  with them and shake hands with them. Now I think
  I understand HIV/AIDS much more than I did. an
  employee of one of the companies

25
LESSONS LEARNT

• Partnership/collaboration GOK/others
• GIPA program requires much concentration and
  effort.
• Need for a strategy for sustainability gtgtgtgt
• Time for strategic planning and close monitoring
  of the activities.
• Because of the nature of PLWHAs work and status,
  very depressing issues usually come up hence,
  the need of support
• Training and support offered improve PLWHAs
  performance and health.

26
LESSONS LEARNT ..

• PLWHAs Needs
• Psycho-social, spiritual, nutritional and medical
  needs
• Bouts of depression
• Opportunistic infections
• Inadequate finances to meet their personal needs
• Need for close attention and love.
• Burnouts

27
GIPA NEPHAK APPROACH

• A broad-based commitment to GIPA exists in
  NEPHAK.
• GIPA is taken as a significant element of an
  effective response to the epidemic.
• GIPA is one of NEPHAKs main component in the 3
  year strategic plan (05 08)
• NEPHAK Recognizes GIPA as one of the vital tools
  for fighting stigma and discrimination in our
  country

28
FINALLY !!

• "The active participation in the fight against
  HIV/AIDS of people living with HIV/AIDS is
  absolutely vital."
• -Kofi Annan, UN Secretary-General

29
GROUP WORK

• Mainstreaming GIPA in our work places