The home care agenda: Lessons from Chiang Mai conference

The Home and Community Care Conference in Chiang Mai, Thailand, continued on Wednesday 18 December with perspectives on the meaning of Home and Community Care. A Thai doctor, Chureeratana Bowonwatanuwang spoke on how people with HIV described what was needed, in order to live positively with HIV. She focussed on acceptance, information, and an action plan for treatment and care. Lynde Francis from Zimbabwe spoke as an enthusiast for alternative therapies and an unconventional approach to nutrition. Finally, Dr Eric van Praag of Family Health International (formerly of WHO) spoke on the definition of home and community care and the continuing need for a range of services regardless of levels of access to antiretrovirals.

Dr van Praag gave a definition of “home care” as “care and support which ensures meeting the medical, nursing and psychosocial needs of persons with chronic illnesses and their family members in their home environment.”

The form this would take depends on a number of factors.

• Epidemiology (low or high prevalence): this could make the difference between using a hospital or social welfare outreach approach, as in Canada, the USA or Senegal or a community-based approach as practised in northern Thailand, Cambodia and a number of African countries.
• Who initiates it: churches tended to focus on social and spiritual needs; hospitals on medical and nursing ones; people living with HIV (who had set up community day centres in Thailand) on a broader range of needs.
• Target audiences: injecting drug users might need a focus on harm reduction and support relating to hepatitis; services for families in rural areas might give priority to food security issues.
• Objective: for example, to discharge people from hospital who needn’t or shouldn’t be there, had driven some services in Botswana.
• Stigma: this had sometimes led services to adopt a broader scope, including other chronic illnesses, even where the majority of people served continued to be people with HIV and AIDS.

Drawing on surveys of people with HIV in Australia before HAART and in New York in 1999, he reported a range of needs which echoed those from similar surveys in the UK. The increasing availability of antiretroviral drugs does not remove existing needs, but tended to add some more. The need for home care is reduced, but remains substantial.

The impact of treatment on some people living with HIV in Zambia and Mozambique had been to raise other issues. “INH (isoniazid, medicine for tuberculosis) makes me hungry.” “A week’s course of cotrimoxazole costs what I need to spend for a week’s food for my children.”

The impact of caring for people with AIDS on families and volunteers needed attention. Some of the effects included feeling exhausted and overwhelmed, having lost opportunities to improve their own situation, a lack of information and education, poverty, neglect of their own needs, and property-grabbing by relatives from bereaved women and children (which has been reported from several countries in Africa and in India).

Home care services therefore needed to address four areas:

• Socio-economic needs, which might mean micro-credit to help people generate an income, nutrition support and support in caring for orphans and guaranteeing their education.
• Human rights and legal support might include help in making a will or educating a community on respect for human rights.
• Psychological support, which might mean follow-up counselling or spiritual support.
• Medical and nursing care, which needed to include diagnosis, treatment and prevention of opportunistic infections and palliative care as well as active treatment of HIV disease.

After discussing different ways to organise care services, he discussed a series of issues:

• Coverage: some services could achieve high levels of availability for people living with HIV, others didn’t necessarily aim for that, but might be there in order to allow an agency to understand the situation of all its service users and to advocate effectively for their needs.
• Costs: much of the cost is in staff time, especially on transport; this can be reduced through the use of trained and supported volunteers. However, what tends to get overlooked is the cost in time, effort and money to households of different models of care: the closer they get to people’s homes, the lower this tends to be.
• Quality: evaluation of services in Malawi in 2000 found serious deficiencies in TB referral, food support, and in supplies of oral rehydration solution to treat diarrhoea. The presentation at the Durban conference was titled: “Care or neglect?”.

One way to address this was through establishing a basic Home Care Kit, basic medicines and supplies … (in South Africa, one version of these is provided to households, complete with simple instructions so that people living with HIV/AIDS and their carers can manage common problems themselves, and call on help only when the simpler remedies have been tried and have failed).

Raising the level of emotional support (which in the Malawian example had also been inadequate) meant training, supervision and documentation of the activities of the home care service.

Finally, the idea of a continuum of care requires that different services actively refer clients between them, as it will rarely be possible for one service to meet all needs. In the Ndola Catholic Diocese in Zambia, twelve agencies have held meetings, rotating each month among their premises, for the last five years, to ensure that every agency is aware of what the others are doing and are able to offer.

Social stigma remains a challenge. It doesn’t disappear, despite access to ARVs, although it does reduce when HIV is at high levels and is highly visible within a community, so that “normalisation” occurs.

With access to antiretrovirals, home care can offer adherence support through families, emotional/psychological support, symptom control and palliative care.

The Home and Community Care conference held in Chiang Mai was impeccably organised, with an exemplary level of care and thought for participants, for the local community, and even for people unable to attend.

In the lead-up, there had been well-moderated email discussions on the themes woven into the programme. During the event itself, an international team of key correspondents worked through conference sessions to create a daily English-language conference newspaper and to maintain the flow of email bulletins. A final conference report is promised within three months.

The programme and abstract book were well presented in remarkably accurate English (possibly helped by the British Embassy in Bangkok, a co-sponsor).

A separate team provided a Thai language newsletter, just as there was a team of translators working in each of the sessions, to ensure that local people living with HIV and AIDS could follow the event. There were regular press briefings about the conference programme, conducted in Thai and English, and media facilities provided by the Thai Ministry of the Interior.

The organisers decided not to issue any declaration or resolution. As they said, the past year has seen several important declarations, notably from the UN General Assembly Special Session on AIDS and also from an ASEAN meeting held in Brunei in November. The priority now should be to deliver on those commitments.

The large and complex venue had been thoroughly signed, in English, and volunteer stewards (many of them from Chiang Mai University) were ever present when participants had to be directed to major activities. The location also had a modern shopping centre of astonishing diversity, in which it was easy to get lost (though again, extra English signage had been provided), which must have added to the impact of the conference on the local economy.

On Tuesday evening, participants were invited to take to the streets in a three-stranded demonstration, which converged at one of Chiang Mai’s historic temples for speeches, dances and other cultural event. Another level of connection was provided – mostly just before and after the conference itself - with “empowering visits” to local services and self-help groups, some of them with visits to tourist attractions – elephant riding and the like - thrown in for good measure.

On Wednesday evening, a fleet of coaches took the conference to an outdoor Kantoke dinner with dancing displays in the Northern Thai tradition by students from the Chiang Mai performing arts college. These included a sword dance, two candle-dances and an umbrella dance – where the umbrellas had red ribbons elegantly painted onto them. The evening culminated in a procession of large flaming red-ribboned balloons, climbing to light up the cloudy night sky. Truly an event to remember.

The next conference in the series will be held in 2003 in Dakar, Senegal. Chiang Mai will be a very hard act to follow.