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OBSTACLES TO BETTER
CARE FOR PEOPLE WITH
AIDS: WESTERN KENYA.
By Samuel Ogare
0733577884/ 0726256323
PATH
samogare2@yahoo.co.uk
INTRODUCTION.
• While research on treatment and care for AIDS
patients in developed countries exists, there is little
information available from developing countries,
whose health care systems already suffer serious
constraints.
• Access to good quality care and treatment {ART}
has transformed the prognosis for people with AIDS
in Western. Although it is feasible and desirable to
deliver antiretroviral drugs in resource poor settings,
few people with AIDS in rural Western receive {will
receive} them.
AIDS CARE FACILITY.
• By the time of this
survey:
- A total of 7500
enrolled patients
-Male to female
ratio of 1:3
• 3500 patients on
ARVs.
I AM LIVING WITH HOPE-
HBC_BUNGOMA
• Client 1- Mary
Ayuma, PLWA
• Widowed with two
children
• Husband died in mid-
90’s.
• Chased away from
marital home and left
without any
livelihood
• Approached CHW in
Bungoma HBC
program , who advised
her to attend VCT
• Tested HIV +ve and
referred for ART
• Initially- body wt
34kgs, CD4 12 before
starting ART. Now
weighs 80kg, CD4
280.
I AM LIVING WITH HOPE-
HBC_BUNGOMA…
• Later trained as ART
adherence counselor.
• Employed as a
subordinate staff at
Webuye SDH with
AMPATH project.
• Formed two support
groups.
• She has now bought a
plot and built a semi-
permanent house.
• Daughter finished
Fourth Form last year
with a B+ grade.
Wishes to be a
chemical engineer.
AIDS CARE CLINICS
• Client 2
• Weight at
presentation – 39kg,
CD4 count of 24
cells/ml.
• Put on ARVs and
given a nutritional
prescription.
• By the time of this
survey she had a CD4
count of 278 cells/ml,
weighs 76kg.
CONTINUUM OF CARE- CARE
• AIDS is an episodic illness, and between relapses
patients may not only require medical /hospital care
i.e. (treatment of opportunistic infections, ARVs and
palliative care), but also:
- Continuous Psychological care.
- Prevention services.
- Nutritional advice.
- Social, Spiritual and economic support/ care.
• An opportunity to improve care and enhance
prevention efforts
• However, the focus on antiretroviral drugs has
distracted and narrowed attention from a
broader model of health care.
• A survey of palliative care for people with
AIDS in Western showed that services were
often inadequate.
• Treatment is initiated in late stage of HIV
disease.
W.H.O’s "3 BY 5" INITIATIVE BY 2005:
ART EVOLUTION
• Devaluationof people living with or associated
with HIV/AIDS
• The shame and embarrassment associated with
HIV and AIDS (stigma) has greatly inhibited
access to the continuum of HIV and AIDS
prevention, care, and treatment services.
• Patients are seen as immoral/ Cursed.
• ARV drugs may also be stigmatizing. Patients
takingantiretroviral drugs often hide their
medicines because some relativesstill reject
them.
STIGMA AND DISCRIMINATION
• Frequent contact with healthcare
providers is difficult.
• Inadequate systems to support adherence
to continuum of care- Treatment
completion ratesvary from 37% (low) to
78% (moderate)in some care service
points .
• However, these systems/ facilities are un-
evenly distributed.
SYSTEMS OF DELIVERY OF CARE
• Missing monthly appointments was the
first reason for non-complianceamong
patients in their period of treatment.
Some patientsgot married, after their
health improved and stayed in their new
homes.
• A visit to care centersto obtain
antiretroviral drugs often takes several
hours, whichis inconvenient for some
patients.
SYSTEMS OF DELIVERY OF
CARE- CONT…
• Healthcareworkers find it difficult to
accept some health providers aspartners,
especially if they have promoted
traditional medicinesfor AIDS or faith
healing.
• Training is insufficient to change the
social strategies and issuesof established
community healers.
• Defining criteria to select possible
partners in care for PLWA is a hardtask.
COMMUNITY INVOLVEMENT IN
CARE SERVICES.
• Some health facilities have introduced
minimal charges which has affected
adherence.
• Many families are already living in poverty
as a result of a reduction in income or
paying for AIDS care.
• Fatigue and withdrawal of Care givers.
• Fewer caregivers compared to PLWAs.
• Inadequate materials necessary in the care
process.
ACCESS TO TREATMENT .
ACCESS TO COUNSELING &
TREATMENT.
• For AIDS patients,
discrimination and
the special needs of
the disease make the
problem particularly
severe. Home
Counselors, for
example, sometimes
shun AIDS patients.
• Care providers’
attitude affect
patients.
PREVENTION FATIGUE
• Prevention strategies
like abstinence
programs for youth
and be faithful
programs for couples
that foster collective
social norms that
emphasize avoiding
risky sexual behavior
are seen as routine.
“Tumechoka! kila
siku ukimwi..
ukimwi…”
FEAR AS A BARRIER TO CARE.
• Much of the stigma
and discrimination is
related to “FEAR”…
people do not know
enough about HIV
and how it progresses
to AIDS.
ABSTINENCE AND HIV RISK
• In/out migration of HIV+ Patients.
• Sexual abstinence before marriage is highly
desirable but difficult:-
• Pressure for paid sex (e.g., cover school fees, house
rent).
• Premarital sex is culturally accepted by males.
• Promotion of abstinence only before marriage
denies adolescents knowledge of safe sex and
promotes earlier marriage with higher HIV risks.
MULTIPLE PARTNERS AND MARITAL
STATUS
Multiple sex partners in past year by marital
status and gender
4.6
44.9
11.6
31
0
5
10
15
20
25
30
35
40
45
50
1 2
Multiplepartners(%)
Married
Unmarried
MULTIPLE PARTNERS AND MARITAL
STATUS.
•Married men have more multiple
partnerships (polygamy and extra-
marital). Most cases only wives would
go for VCT. This hinders care services.
•Unmarried women have more multiple
partnerships than married women.
THE ORPHANS PROBLEM
• Numbers are large and growing (Figures… missing).
• Social support systems are overwhelmed.
• Risk of a lost generation:
 Little or no education.
 Poor socialization.
 Social tasks.
 Economic underclass.
RECOMMENDATIONS
• For care & support programs to be successful
there is need to be integrated within existing
community social activities and also existing
medical services like ANC, MCH, RH & HIV
programs.
• Care services should be built on community-
led research.
• There is need to have an on-going involvement
from all segments of community with
particular emphasis on male partners,
grandparents & traditional leaders.
RECOMMENDATIONS….
• Provide communities with simple tools to help
them identify realistic & feasible ways to begin
addressing community stigma.
• Invest in interpersonal communication to
enhance community dialogue on care for AIDS
patients issues.
• The 3 by 5 initiative should promote training
programmes on medical ethics and human
rights in AIDS care and support for health
workers.
• Involve PLWA in all activities related to care.
CONCLUSION...
• Recruiting and training more care providers/
attendants, is a modest investment that ''can
cure a larger problem.''
• People with AIDS need your understanding
and help.
• If you are a person living with HIV, come forth
and become an advocate for change.
• If you are an employer don’t discriminate
against healthy HIV positive people who are
looking for work.
THANK YOU.
www.path.org

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Barriers to care samwel ogare- path kenya

  • 1. OBSTACLES TO BETTER CARE FOR PEOPLE WITH AIDS: WESTERN KENYA. By Samuel Ogare 0733577884/ 0726256323 PATH samogare2@yahoo.co.uk
  • 2. INTRODUCTION. • While research on treatment and care for AIDS patients in developed countries exists, there is little information available from developing countries, whose health care systems already suffer serious constraints. • Access to good quality care and treatment {ART} has transformed the prognosis for people with AIDS in Western. Although it is feasible and desirable to deliver antiretroviral drugs in resource poor settings, few people with AIDS in rural Western receive {will receive} them.
  • 3. AIDS CARE FACILITY. • By the time of this survey: - A total of 7500 enrolled patients -Male to female ratio of 1:3 • 3500 patients on ARVs.
  • 4. I AM LIVING WITH HOPE- HBC_BUNGOMA • Client 1- Mary Ayuma, PLWA • Widowed with two children • Husband died in mid- 90’s. • Chased away from marital home and left without any livelihood • Approached CHW in Bungoma HBC program , who advised her to attend VCT • Tested HIV +ve and referred for ART • Initially- body wt 34kgs, CD4 12 before starting ART. Now weighs 80kg, CD4 280.
  • 5. I AM LIVING WITH HOPE- HBC_BUNGOMA… • Later trained as ART adherence counselor. • Employed as a subordinate staff at Webuye SDH with AMPATH project. • Formed two support groups. • She has now bought a plot and built a semi- permanent house. • Daughter finished Fourth Form last year with a B+ grade. Wishes to be a chemical engineer.
  • 6. AIDS CARE CLINICS • Client 2 • Weight at presentation – 39kg, CD4 count of 24 cells/ml. • Put on ARVs and given a nutritional prescription. • By the time of this survey she had a CD4 count of 278 cells/ml, weighs 76kg.
  • 7. CONTINUUM OF CARE- CARE • AIDS is an episodic illness, and between relapses patients may not only require medical /hospital care i.e. (treatment of opportunistic infections, ARVs and palliative care), but also: - Continuous Psychological care. - Prevention services. - Nutritional advice. - Social, Spiritual and economic support/ care.
  • 8. • An opportunity to improve care and enhance prevention efforts • However, the focus on antiretroviral drugs has distracted and narrowed attention from a broader model of health care. • A survey of palliative care for people with AIDS in Western showed that services were often inadequate. • Treatment is initiated in late stage of HIV disease. W.H.O’s "3 BY 5" INITIATIVE BY 2005: ART EVOLUTION
  • 9. • Devaluationof people living with or associated with HIV/AIDS • The shame and embarrassment associated with HIV and AIDS (stigma) has greatly inhibited access to the continuum of HIV and AIDS prevention, care, and treatment services. • Patients are seen as immoral/ Cursed. • ARV drugs may also be stigmatizing. Patients takingantiretroviral drugs often hide their medicines because some relativesstill reject them. STIGMA AND DISCRIMINATION
  • 10. • Frequent contact with healthcare providers is difficult. • Inadequate systems to support adherence to continuum of care- Treatment completion ratesvary from 37% (low) to 78% (moderate)in some care service points . • However, these systems/ facilities are un- evenly distributed. SYSTEMS OF DELIVERY OF CARE
  • 11. • Missing monthly appointments was the first reason for non-complianceamong patients in their period of treatment. Some patientsgot married, after their health improved and stayed in their new homes. • A visit to care centersto obtain antiretroviral drugs often takes several hours, whichis inconvenient for some patients. SYSTEMS OF DELIVERY OF CARE- CONT…
  • 12. • Healthcareworkers find it difficult to accept some health providers aspartners, especially if they have promoted traditional medicinesfor AIDS or faith healing. • Training is insufficient to change the social strategies and issuesof established community healers. • Defining criteria to select possible partners in care for PLWA is a hardtask. COMMUNITY INVOLVEMENT IN CARE SERVICES.
  • 13. • Some health facilities have introduced minimal charges which has affected adherence. • Many families are already living in poverty as a result of a reduction in income or paying for AIDS care. • Fatigue and withdrawal of Care givers. • Fewer caregivers compared to PLWAs. • Inadequate materials necessary in the care process. ACCESS TO TREATMENT .
  • 14. ACCESS TO COUNSELING & TREATMENT. • For AIDS patients, discrimination and the special needs of the disease make the problem particularly severe. Home Counselors, for example, sometimes shun AIDS patients. • Care providers’ attitude affect patients.
  • 15. PREVENTION FATIGUE • Prevention strategies like abstinence programs for youth and be faithful programs for couples that foster collective social norms that emphasize avoiding risky sexual behavior are seen as routine. “Tumechoka! kila siku ukimwi.. ukimwi…”
  • 16. FEAR AS A BARRIER TO CARE. • Much of the stigma and discrimination is related to “FEAR”… people do not know enough about HIV and how it progresses to AIDS.
  • 17. ABSTINENCE AND HIV RISK • In/out migration of HIV+ Patients. • Sexual abstinence before marriage is highly desirable but difficult:- • Pressure for paid sex (e.g., cover school fees, house rent). • Premarital sex is culturally accepted by males. • Promotion of abstinence only before marriage denies adolescents knowledge of safe sex and promotes earlier marriage with higher HIV risks.
  • 18. MULTIPLE PARTNERS AND MARITAL STATUS Multiple sex partners in past year by marital status and gender 4.6 44.9 11.6 31 0 5 10 15 20 25 30 35 40 45 50 1 2 Multiplepartners(%) Married Unmarried
  • 19. MULTIPLE PARTNERS AND MARITAL STATUS. •Married men have more multiple partnerships (polygamy and extra- marital). Most cases only wives would go for VCT. This hinders care services. •Unmarried women have more multiple partnerships than married women.
  • 20. THE ORPHANS PROBLEM • Numbers are large and growing (Figures… missing). • Social support systems are overwhelmed. • Risk of a lost generation:  Little or no education.  Poor socialization.  Social tasks.  Economic underclass.
  • 21. RECOMMENDATIONS • For care & support programs to be successful there is need to be integrated within existing community social activities and also existing medical services like ANC, MCH, RH & HIV programs. • Care services should be built on community- led research. • There is need to have an on-going involvement from all segments of community with particular emphasis on male partners, grandparents & traditional leaders.
  • 22. RECOMMENDATIONS…. • Provide communities with simple tools to help them identify realistic & feasible ways to begin addressing community stigma. • Invest in interpersonal communication to enhance community dialogue on care for AIDS patients issues. • The 3 by 5 initiative should promote training programmes on medical ethics and human rights in AIDS care and support for health workers. • Involve PLWA in all activities related to care.
  • 23. CONCLUSION... • Recruiting and training more care providers/ attendants, is a modest investment that ''can cure a larger problem.'' • People with AIDS need your understanding and help. • If you are a person living with HIV, come forth and become an advocate for change. • If you are an employer don’t discriminate against healthy HIV positive people who are looking for work.