Feed abck from the 5th international conference on home based care at Changmai held - 17-20 Dec 2001

[Guest guest]

Dear Friends

 

I had the privilage to be sponsored by FHI - India with many a thanks to attend the 5th international conference on home and community care for Persons living with HIV/AIDS from 17th Dec - 20th Dec 2001 in Changmai Bangkok. The following were the noted issues and possible solutions that were broadly discussed and expressed. It was clearly recognised that in the coming years home based care with community support is the only solution to HIV/AIDS management which of course should be integrated. The conference did give us insight especially to the NGOs who are running communioty based care programs from large countries like India wherein we face a lot of complexities with our existing programs.

 

Regards

shyamala ashok

 

Issues:

 

AIDS can be treated: HIV is a manageable chronic disease; Home care services helps us listen, care and support, the major obstacles to which are stigma discrimination; Care Support and Prevention should be integrated.

 

The reality of AIDS: Chronic ill health and stigma threatens humanity; AIDS has lead to friendships and to improve health we need medicines; fight to preserve human dignity, which includes a fight to drugs.

 

Barriers: Comprehensive needs assessment; Sex Workers and Micro credit; Commercial based research; Integrate counselling with home care; Quality of Life needs to get real; MTCT can now be narrowly focused; Long standing issue of integration; DOTS can also be applied to monitoring of ARV.

 

Improving access to Quality: Management of OI is primary; Prevention of OI helps in the long run; Simple medicines help the PLHA needs; Uncertainty of prophylaxis with clear information; ARV will become more available with CD4 monitoring; ARV are cheaper because of the greater involvement of PLWHA; Hospitals have chances to do better and improve their skills.

 

We still need Home Based Care: ARV progression causes conflicts; If treatment is to help prevention enrollment must be fair; ARV has not addressed stigma.

 

Home Care Continuum (HCC) is the key to reducing costs: Limit burden on hospitals; HCC necessasary for PLWHA needs; Small Scale Projects – Lessons learnt; Volunteers and Cost Effectiveness.

 

Sustainability: Basic needs are not met; how could we sustain volunteers; Church programs are more successful; Incentives for volunteers.

 

How to achieve successful partnerships: GIPLWHA are cross cutting issues; misunderstanding between Govt. and PLWHA needs; Identity and different roles of the partners; Volunteers should have professional accountability and improve quality; Volunteers with professionalism and supervision by peer leaders.

 

Stigma and Discrimination in the social context of care: Rights and violations of rights; heard repeated stories; experience is at a different stage; issues of self stigma; children neglected; need for community based programs to help both adult and children; Taboo in India; Cleanliness, adequate nutrition and health; disclosure by the burden of secrecy; interactive self help groups; making access to treatment and care a legal requirement; integrating AIDS care into existing programs; using church based volunteers more sustainable.

 

Rights of Doubly Discriminated persons: Immigrant women need respect for confidentiality; Rights in IDU and sex Workers received less importance; interactive self help groups.

 

Education and HIV infected child: AIDS having a devastating impact on children infected; involvement of teachers with more charges.

 

Coalition Efforts against Stigma and Discrimination: It is a major obstacle in partnership building; neutral organizations being a bridge to the Govt. Organizations; Bridge Organizations to sensitize the Governments and banish taboos with human touch.

 

Enabling Environment and Problem and Challenges: Strategically and financially scale up successful small scale projects; social support for PLWHA; capacity building of care providers in community that lacked funding for medicines; Disclosure of HIV status to adult children being problematic and not discussed sufficiently; needs of family care givers should be discussed in addition to their roles in homes; “Head in the Sand” are the levels of the private sectors who view HIV/AIDS very lightly; the challenges to strengthen partnerships Govt, NGO and Private Sectors; Family and members should be seen as individual human beings with problems and constraints; lack of discussion in community based to report to 1 million orphans; to reflect and synthesize greater contributions.

 

Possible Solutions:

 

Sustainability occurs only while you mainstream and integrate HCC with existing preventive programs; scaling up of Govt. and Private sectors with more pilot programs; Business can manage AIDS; Large networks of mass organizations are an effective tool to create an enabling environment; Information networks can be used as effective political advocacy to change views; Industrial networks to fulfill their objectives and contribute; human ability to accept to adapt and challenge situations but ultimately integrate HIV/AIDS into existing programs; voluntary counselling; Business / labor Policy / Program Development with sustainability; Enhanced partnership building; forceful advocacy and effective scale up.

 

Positive Living and obstacles: Stigma and Discrimination is still the riding factor; PLWHA should not hide their status and should come out openly and simultaneously people should accept; lack of education and knowledge which applies to the infected and affected; Disclosure and Confidentiality to be simultaneously observed; PLWHA are the best carers with good self care; Need for multi sectrol synergistic approach to support and care for PWHA.