[procaare] HCC:Summary 7: Post Conference Discussion

[Insight Initiative Team <insight@hdnet.org>]

HCC:Summary 7: Post Conference Discussion
- Insight Initiative, Thailand
*************************************

Introduction:

We have concluded the post conference discussion on Theme 3: Enabling environment in which
we highlighted a few of the key issues that were discussed in this area during the HCC
Conference. The discussion commenced on the 11th February 02 and concludes today, the 19th
February 02.

Theme 3: Post Conference Discussion Summary

"The electronic conference coverage makes the content and even the spirit of the event
available to thousands...Perhaps in the future conferences will primarily happen on-line.?
These were Dr Sandra Anderson, UNAIDS, South Africa (Insight Initiative: Key Resource
person) comments regarding the conference coverage, with which the discussion commenced.

The effects of donor fatigue on home care projects were seen as an area of great concern.
It was strongly felt that unless adequate donor commitment is forthcoming HCC projects
would fail.

It was said that donors use words like "sustainability" to mask their reluctance to back
home and community care projects. This was demonstrated in an example emerging from Kenya
where Dorothy Oyango, Women Fighting Against AIDS described the impact of "donor" fatigue
had on their effort to care for children orphaned by the HIV/AIDS epidemic.

Dr Van Praag was cited as acknowledging that home and community care has never been
popular with donors and added that they preferred to direct their resources to prevention
programs.

The discussion then focused on HCC models where a variety of HCC models were examined some
of which could be useful in ARV delivery in the community setting. A model which made use
of the Syndromic approach used in STD?s(Sexually Transmitted Diseases) case management had
proved successful. It was felt that this could be useful in poor resource areas where
there was limited access to medical health practitioners. Constraints identified included
client drug compliance, which may lead to the development of resistant types of infections
and further health deterioration, through liver complications and other problems.

It was however also suggested that this could be addressed by utilizing DOTS (Directly
Observed Therapy Short Course) strategies as has been done successfully in the
Tuberculosis Control Programme.

Dr van Praag had stressed the importance this saying that home care programs could
facilitate better ARV adherence, and mobilize the necessary family support for still
complex treatment regimens, which cannot be discussed in a busy outpatient clinic. He
emphasized the fact that easier access to ARVs, will definitely not result in home care
programs being less needed.

The feasibility of replicating the models was examined. It was however felt that scaling
up and consolidation the project in the same area, might be preferable first.

Successful projects in four countries were next examined. In a project in the south of
Thailand, where a holistic approach to home and community care for PLHA's was used it was
seen that communities were strengthened. They worked actively with the hospitals through a
referral-sustained system. This enhanced understanding and mutual collaboration between
communities and the PLHA's.

Counselling, support group formation and community involvement played a major role in
successes achieved in Namakkal, South India. Their activities were supplemented by condom
use promotion, advocacy, education, and facilitation of care and support.

At Kayamandi in Stellenbosch, South Africa, it was found that mobilizing the community
required research and intervention the latter including training workshops. Schools, AIDS
service organizations and the community became involved in condom promotion, and
education. Church based organizations are mostly involved in HCC and provide training.

In the Philippines, youth involvement was addressed by the recent creation of the Positive
Action Foundation Philippines, Inc. (PAFPI). This organization trained affected children
and relatives of Filipino migrant workers as STI/HIV/AIDS health educators in
pre-departure orientation seminars to promote acceptance and advocacy.

The discussion concluded that the key to the success achieved in these projects was the
mobilization of the communities concerned.

The importance of building capacity in caregivers was stressed. It was clearly stated that
caregivers are the backbone of the HCC programmes and are relied upon to provide the
much-needed care, yet very often they are not capacitated to provide that care. Their own
basic needs are often neglected thus resulting in a fast drop out rate. This is
particularly so when volunteers are used as caregivers. Burnout and stress are seldom
managed.

Community driven HCC programs utilizing volunteers may have greater chances of
sustainability, as there will be less reliance on heavy funding. but unless capacity
issues are addressed these projects will collapse. Volunteers and family caregivers should
be involved in the planning stages of HCC projects so they have a sense of ownership.

Family caregivers are equally needy. The elderly in particular have been neglected for so
long in HIV/AIDS arena and well as in care and support programs, yet research has revealed
that many carers are elderly and that they need programmes targeted to their needs. The
primary care giver is most often the woman, generally over 60 years old. In fact reports
have been cited suggesting that over 70% of primary caregivers are in this age range.which
results in health consequences to themselves due to the workload that is imposed upon
them.

It was stated that men also been overlooked, firstly in their ability to be involved in
care and secondly perhaps in their own reluctance to see this as part of their role.
Encouraging men to play a greater role in care and support acknowledges the extra burden,
and the expectations, on women, and thus can help to ease their burden.

It was felt that gender in the context of HCC needs further attention. This was emphasized
by Caroline Maposphere, Zimbabwe who felt that we need to make an effort to challenge the
conventional norms. Utilizing research strategies such as the Participatory Community
Approach (PCA, discussed by Maria Osbeck, could assist in communities acknowledging the
existence of gender issues and addressing them.

We see that although women are the main actors in the implementation phase of HCC, their
participation in planning and resource allocation is minimal. Caroline felt that it is
critical to identify and address the gender needs of home care clients, home care
providers and home care in general.

Additional issues that were examined which contribute to an enabling environment included
a discussion on pain relief in HIV/AIDS patients in which it was felt that the control of
pain is a crucial issue in HIV/AIDS.According to Dr. Bernard J. Lapointe, of Canada,
access to pain relief medication is as important as access to ARVs. The prevalence of pain
increases as the disease progresses so much so that 80% of AIDS symptomatic patients
report pain.

It was interesting that the 'under-treatment' of pain is more common among IDUs
(Intravenous drug users), who mostly received less or inadequate analgesic.

It was also thought necessary to involve others in pain therapy, especially family members
and close friends of the patient. The availability of tools to assess pain was discussed.
Finally it was stated that effective pain management affected mortality.

The discussion concluded with a look at the importance and role of electronic media in
making informed decisions on HIV/AIDS. It was concluded that e-forums are valid components
in tackling HIV/AIDS and provide equitable opportunity for participation, sharing,
advocacy and networking despite access constraints.

Thank you once again for your continued support. We look forward to your contributions in
Theme 4: Positive living.

With best wishes

Insight Initiative Team, Thailand
Health & Development Networks
Email: insight@hdnet.org
Web: www.hdnet.org


*************************************

The Insight Initiative Project is managed by Health & Development Networks (HDN) in
collaboration with the Thailand Red Cross Society, the World Health Organization and the
Royal Thailand Government, with financial support from AusAid and UNAIDS.

For more information about this project (the 'Insight Initiative'), visit the HDN website
at: http://www.hdnet.org

Fifth International Conference on Home and Community Care for Persons Living with HIV/AIDS
Chiang Mai, Thailand - 17-20 December 2001
Website: http://www.hiv2001.com


*************************************





--
To send a message to ProCAARE, write to: procaare@usa.healthnet.org
To subscribe or unsubscribe, write to: majordomo@usa.healthnet.org
in the body of the message type: subscribe procaare OR unsubscribe procaare
To contact a person, send a message to: procaare-help@usa.healthnet.org
Information and archives: http://www.procaare.org

The views presented in ProCAARE do not necessarily reflect the opinions of
SATELLIFE  (http://www.healthnet.org), the Harvard AIDS Institute
(http://aids.harvard.edu), or Health & Development Networks
(http://www.hdnet.org), unless otherwise stated. The reader assumes all
responsibilities in using information posted or archived by ProCAARE.
Reproduction is welcomed, provided ProCAARE and procaare@usa.healthnet.org
are quoted, and SATELLIFE is informed of usage.