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AIDS action  >  Issue 28 - Home care
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AIDS action  -  Issue 28 - Home care

Home and hospital

Issue Contents
 

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Home and hospital

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Continuum of care

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Care across a continuum

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Close links

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Prevention and care

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Comprehensive care

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Confidentiality

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Involving people with HIV

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Community involvement

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Quality and access

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Does hospice care have a role?

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Programme planning

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Steps in setting up home care

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Before starting...

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Responding to needs

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Referrals for home care

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Staff and training

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Wider involvement

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Counselling

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Care at home

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Care costs

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Programme monitoring

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Treatment, care and medicines

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Caring at home

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Guidelines for carers

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Infection control

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Skin problems

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Sore mouth and throat

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Fevers and pain

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Cough, difficulty in breathing

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Diarrhoea

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Medicine and supplies

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Basic medicines and supplies

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Key role for volunteers

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Letter

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Resources

 

 

 

AIDS action  Issue 28         Page 1   2  top of page

  Issue 28 March - May 1995

Home and hospital

With support from family, volunteers and health workers, good care can be provided at home

In most countries there are now significant numbers of people with HIV-related illnesses. The burden on health services is growing. In 1992 developing countries spent a total of US$340 million on health care for people with HIV, up to one third of some national health budgets. One study in Zambia reported that up to half of all patient-days in medical wards of a central hospital were accounted for by people with HIV-related illness.

Health services, NGOs and mission hospitals have developed programmes to enable people with chronic illnesses to be cared for at home. Although these programmes can reduce costs and demand on in-patient facilities, saving money is not their main aim. Long-term hospital care is rarely needed for people with HIV, although it may be necessary for some special investigations and treatments, or intensive nursing care. Many people prefer to be cared for at home, with adequate resources and support. Most HIV-related infections such as diarrhoea, coughs and fever can be treated at home with support and advice from visiting health workers. People with incurable illnesses often choose to die at home, where they can be with their family and spiritual or religious adviser. 

For many people, staying at home is the only option. Hospital care is not always available or accessible - families cannot afford transport or medical costs, or to stay with the sick person while they receive treatment. 

'Home-based care' or 'community-based care' programmes aim to:
 

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ensure that people receive basic nursing care, as well as social and emotional support

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enable health workers to make home visits 

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train volunteers, families and people with HIV in basic nursing care and infection control

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mobilise other people to provide support 

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reach sick people who are not using health services 

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provide advice or money for income generation 

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integrate care with HIV education 

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promote acceptance of people with HIV

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reduce pressure on hospital in-patient facilities.

 

Providing high quality home care is not easy. At its worst, home care can become 'home neglect'. Pressures on poor families are often immense, health workers are often unable to make frequent visits, and volunteers are inadequately trained or equipped. Sometimes the sick person is neglected due to fear of HIV or a belief that they will die soon.

 

In this issue
 

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What is comprehensive care? Page 2

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Planning home-based care Page 4 and 5

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Medicines and supplies Page 7



AIDS action  Issue 28    1   Page 2   3  top of page

  Continuum of care

 

Prevention and care 
Experience in HIV prevention and care shows that they work best when carried out together, as described in the recent evaluation of TASO in Uganda. Care activities need to include prevention - counselling and education about HIV for both people with HIV and their families. People living with HIV who feel cared for and supported are more likely to take responsibility for protecting others from infection. Family and friends involved in looking after a person with AIDS have opportunities to learn about HIV.

Likewise, prevention programmes need to include care activities, to enable people with HIV to remain involved if they wish, even if they become ill. Integrating care and education also stops barriers developing between 'them' (the sick) and 'us' (the well), showing the wider community that AIDS does exist, and that people with HIV are just like anyone else.

Comprehensive care St Martin's Clinic in Agomanya, a rural town in Ghana, has developed a home care programme, in liaison with the Ministry of Health, the church, NGOs, political and women's groups, community leaders and traditional healers. People with HIV are also taking part as counsellors and support group coordinators. 

People with HIV-related infections attend the general out-patient clinic for treatment, and many also come to the weekly TB clinic to collect food and medicines, including antibiotics, gentian violet and ORS. Condoms are provided free at the clinic and on home visits. 

A home care officer and a TB worker visit the home, where they provide counselling and medicines, training in basic nursing care and education. The team visits people who choose to stay with traditional and spiritual healers, who will refer them to the clinic when they need medical care. Members of the local church pay home visits to provide spiritual and practical support. People without family support are provided with bedding, food and clothing, and help with income generation through trading (if they are well enough). The clinic staff have established a co-operative with local young people for processing cassava and cotton, and preparing weaning foods.

Dr Margaret Mensah, St Martin's Clinic, PO Box 9819, Airport, Accra, Ghana.
 

 


Close links
 
An effective home care service depends on a 'continuum of care' where hospital, clinic and welfare services are linked with the person and their family, as well as members of the wider community. The home care team, often working with trained volunteers, plays a crucial role in this continuum, and needs committed and well trained health workers, counsellors and social workers, as well as supplies and equipment. However, it is costly to sustain a programme where hospital staff travel out to people's homes, and better results have been achieved by involving community health workers, as described on page 4.

In Manipur, India, many injecting drug users are becoming sick with HIV-related illnesses. The National AIDS Control Organisation is working with the local NGOs, medical college and groups run by injecting drug users. People report benefits from the service. With the involvement of many different groups including people with HIV, attitudes and practices of health staff are changing for the better, with greater acceptance of both injecting drug users and HIV-related illnesses. Although many home care programmes began working only with people with HIV, more are now including anyone with chronic illness, and integrating programmes with other community services. Experience has also shown that health workers' morale remains higher when they care for a wider range of clients, including some with curable conditions.



AIDS action  Issue 28    2   Page 3   4  top of page

  Continuum of care

 

Confidentiality 
Home care programmes need to be sensitive to the need for confidentiality while trying not to 'hide' the illness. Too much secrecy can encourage stigma and discrimination justifiably feared by people with HIV. 

However, it is very difficult to involve the family, and to combine care with education, if the person feels unable to tell anyone why they are ill. Access to counselling, both for individuals and family groups, is essential to help people come to terms with their infection. Telling a few people, with support from a trusted counsellor, can give someone with HIV more confidence, and lead to their involvement in wider education efforts, as described by an AIDS Action reader on page 8.

Involving people with HIV
It is important that the programme meets the needs of people with HIV and their families, and actively involves them. Most studies to assess people's needs show that their greatest problems are poverty and lack of medical care, not HIV illnesses. Fear of rejection by family members is also common. 

Involving people with HIV means that they can take part as carers and educators, not simply as patients or clients. Home care relies on the family's ability to provide care, nutritious food and medical treatments. Their capacity to cope needs to be assessed and plans made with family members.

Women and older girls are usually the main care providers. Girls are likely to be withdrawn from education before boys when extra hands are needed at home or when there is not enough money for school fees. Home care and prevention programmes need to reduce these pressures by providing economic, legal and employment sup-port, and promoting equal responsibility for caring in the home.

Community involvement 
Volunteers playa major role in reducing pressures on families in many home care programmes, as described in the report from the Zimbabwe Red Cross on page 7. Increasingly, programmes are encouraging men to volunteer as well as women. In Uganda, both men and women in existing community groups are providing practical support such as bringing food, doing laundry, or cultivating land.

The involvement of local people can also stimulate the community to support families affected by HIV, reduce stigma and promote changes in traditions and practices that increase risk. All too often volunteers from church or community groups are involved simply as an inexpensive way to increase service capacity. But they are essential partners in a comprehensive care service, and maintaining their active involvement and motivation is important. Many programmes provide basic expenses, training certificates or special T-shirts.

Quality and access 
Clients for home care are usually referred, with their agreement, from out-patient or STD clinics, or HIV counselling centres. This means that services often fail to reach those in most need because people are unwilling or unable to use the formal health system. 

Home-based care is not a cheap option if it is to provide a minimum and sustainable level of service for people. Many hospitals and NGOs have found that programmes cannot be continued because of lack of funds. Selection and motivation of volunteers is vital to the success of such programmes. The hidden costs to the family of caring for someone at home also need to be considered.

Programmes also need to develop ways to monitor and evaluate the service, in terms of numbers reached, and client feedback Some suggested methods are summarised on page 5.

Thanks to Drs Clement Chela, Shiv Lal, BB Thakur, NACO, New Delhi, India.


Jackson, H, 1994. The benefits of comprehensive care across a continuum (Presentation to WHO/PA workshop 'Provision of HIV/AIDS care in resource constrained settings') 

Foster, S, 1994. 'Care and treatment of HIV disease in developing countries from a socioeconomic perspective.' AIDS, 1994, 8 (supplement), pages S341-S347. 

SANASO Home Care Workshop Report, Chikankata Hospital, Zambia, April 1994.


Does hospice care have a role?
In some situations it is not possible to care for people at home. Some families are too poor, or are already under too much pressure. Some people with HIV choose not to live with their families or have been rejected by them. Hospices - specialised nursing centres for people with terminal illnesses - can provide good care in a supportive environment. However, they are extremely expensive, and can increase prejudice by isolating people from the wider community. But in some countries where there are already well-established home care programmes, short term residential centres are being planned, sometimes attached to health clinics or hospitals. For example, the Mashambanzou hospice in Zimbabwe provides more intensive nursing and medical care than is possible at home. It is staffed mainly by volunteers who are family members, local community members and people with HIV who are well.

In many countries in Asia, people with HIV cannot be cared for at home because community discrimination is too great. In Thailand Buddhist monks are taking a lead role in providing care. The Friends for Life Center was set up by a Buddhist monk in 1994 to provide support for people with AIDS. With 10 beds, it is staffed by two monks, three lay employees and three volunteers (who have HIV). Friends for Life does not aim to become a hospital, but acts as a drop-in and short term residential centre. It plans to run courses to train people with HIV and their relatives in home care, including traditional Thai medicine and herbal treatments. 

Friends for Life Center, 183 Mu 4 behind Wat-Mai Huay Sai, Suthep Subdistrict, Muang District, Chiangma; 50200, Thailand





AIDS action  Issue 28    3   Page 4   5  top of page

  Programme planning

Steps in setting up home care

Experience in rural South Africa provides useful tips for hospitals or health centres considering a home care programme

Before starting...

As part of planning a new home care service, it is important to first assess the level and type of need, and what is already being done.
 

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What are the reported numbers of people with HIV-related illness in the area (with a breakdown by age and sex)? Refer to records in local hospitals, antenatal or STD clinics where HIV testing has been carried out, or national HIV data. Increasing levels of TB, especially among young adults, are usually associated with HIV. Shingles in adults is another common indicator. 

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What are local attitudes towards AIDS? How are people with HIV viewed by their families and in their communities? What do people with HIV and their families need? Talk with hospital patients and their relatives, and contact other organisations working with people with HIV. For example, in KwaZulu, clients' main concerns were about financial and material support: lack of jobs, money, food, clothing, water, transport and medicines. Other major needs were for medical care, emotional and spiritual support, and education about HIV. People were often afraid of disclosing their HIV status and worried about their children's future. 

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What care is already being provided, and what is the impact on health service provision and staff? Examine trends in how hospital services are being used (outpatient attendances, hospital admissions and bed occupancy rates). Assess whether staff are experiencing particular difficulties related to HIV care.

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Are appropriate medicines available for use by health workers making home care visits? What are the most commonly used medicines for treating HIV-related illnesses? Would medicines be free of charge? Is there an adequate supply of condoms? 

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Assess how HIV-related infections are treated in the community. Have community-based health care providers, such as community health workers or traditional healers, noticed more people with HIV-related illnesses?

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How is contact maintained with people who have been diagnosed with HIV/AIDS in hospital, and discharged? To what extent are counselling and testing available and being used appropriately? 

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What community services already exist? Consider whether they could be expanded to include care for people with HIV/AIDS as well? What are the pros and cons of providing home care for all chronically ill patients, as well as those known to have HIV? 

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Could links be improved with STD, family planning, TB or MCH services? 

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What other services are there? Are local NGOs providing care or counselling? Could links be improved with health services and organisations doing prevention work? Experience in rural South Africa provides useful tips for hospitals or health centres considering a home care programme.


Responding to needs
 
The type of home care programme will depend on the needs identified and resources available. In addition to setting up a structure for providing both medical care and other support, the programme's aims will probably include co-ordination with inpatient and clinic services, and access to voluntary and confidential counselling and testing.

It may include strategies for appropriate education in the community as well as for patients and their families. It may be HIV/AIDS specific, and rely only on hospital referrals, or it may target a wider range of people. One evaluation in Central Africa showed that nearly half of people visited by a home-based care programme had illnesses that were not HIV-related. The extent to which other health issues can be tackled will need to be assessed over time as the programme develops.

Referrals for home care
Good referral systems between home clinic and hospital need to be established. In KwaZulu people are referred to the home care team when they arrive at hospital with an HIV-related illness or from the counselling and testing service. They are offered an initial home visit. Traditional healers and community health workers refer people to the team also.

Staff and training
Experience shows that teams made up of hospital-based staff alone are less successful. Treating most HIV-related infections does not require highly trained staff. The presence of uniformed nurses in the community can attract unwanted attention and limit development of informal and supportive relationships. Also, salaries for high grade staff and transport costs are extremely high. Consider involving community health workers in the team. In KwaZulu, for example, TB field workers were interested in being trained to visit people with AIDS as well. 

This worked well, because many people had both HIV and TB infection. Strategies for care were developed with the community workers, and strengthened through their knowledge of their communities.

Traditional healers are involved in the KwaZulu home care programme.

Community health worker training included management of common illnesses such as skin rash and diarrhoea, and how to train family carers in basic nursing and home care. They were provided with essential medicines and other supplies (see page 7). Support for staff is very important, through strategies such as developing a team spirit, working in pairs, regular supervision, opportunities to record successes, good planning, and refresher training. 

The specific roles of health workers, other staff and volunteers need to be developed and understood by everyone in the team. It is important that all team members are included in planning and evaluating the programme and in particular that volunteers' contributions are recognised.





AIDS action  Issue 28    4   Page 5   6  top of page

  Programme planning

 

Wider involvement
As part of making stronger community links, organise meetings and work-shops with local healers. This gives valuable opportunities for sharing knowledge and perceptions about HIV and AIDS, roles for healers in prevention and care, infection control, and referrals to hospital and clinics. It is also important to meet with local NGOs and community leaders, including those from religious and traditional organisations, to discuss their perceptions of the epidemic and possible ways to support families and provide community education. Where it is not possible to include social workers in the team, it is useful to maintain close links with relevant departments.

Counselling 
Emphasise the importance of ongoing counselling, not just before and after HIV testing. In KwaZulu, the health workers had difficulty combining care with emotional support and education on HIV prevention and infection control in cases where the patients were unwilling to tell close family members that they had AIDS. Counselling helped them to accept the need to talk to relatives. As part of the care programme, ideally all staff need training in basic counselling skills. Referral systems should be maintained with the hospital-based counsellors.

Care at home 

Visits by the home care team are often valued by patients and families for medical care and advice. Transport to hospital, emotional support, education and food parcels are also important.

One of the most important issues for the patients and carers is money. Possible sources of income from welfare departments or NGO sources should be investigated. Starter grants for income generation projects should be made available where possible. Continuing access to education for children is often a concern. In KwaZulu the home care team provides advice on government benefit schemes. 

Critically ill patients should be referred to hospital when carers are unable to cope. Many people choose to die at home and counselling and practical support for patients and carers is particularly important at this time. Help after the person dies is also important, not only to provide practical advice about handling the body but to support the family emotionally. Other family members may themselves be HIV-positive or already sick.

Trained community health workers can be key members of the home care programme.


Care costs
 
Costs depend on the type of service, but sufficient resources need to be allocated for the programme to be sustainable in the long term. The main costs are likely to be vehicles and staff, together with drugs, equipment, food and other material support. Involving and training community volunteers in planning and giving care can reduce costs and increase people's motivation, although the costs of ongoing training and supervision need to be considered.

Direct costs to the family, such as payment for medical or traditional treatments, extra food and other items should be taken into account. Estimating indirect costs due to loss of earnings or agricultural productivity and additional workloads on women are less easy to measure.

Programme monitoring
Indicators for measuring the success of the programme need to be established at the start of the programme and team members need to keep accurate records. The following indicators may be useful: the number of people with HIV accepting care at home and how many have an identified carer; numbers sharing their diagnosis; number of visits which provide material assistance and referrals; number of drugs and condoms distributed. Changes in hospital attendance should be monitored. 

Issues such as quality of care, changes in community attitudes, satisfaction with treatment, adequate support for carers from the home care team and volunteers, evaluation of volunteer training may be considered after the programme has run for some time. Involving people with AIDS, care givers and team members in evaluation is important to ensure that the programme responds to the needs of the community.

Dr Laura Habgood, former AIDS team adviser, and Dr James Stuart, former AIDS programme manager, KwaZulu, South Africa c/o LSHTM, Keppel Street, London, UK.



AIDS action  Issue 28    5   Page 6   7  top of page

  Treatment, care and

Caring at home

Family members and volunteers can carry out basic nursing tasks, with support from health workers.


Guidelines for carers
 

Families or other community members can be taught to: 
 

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provide good nutrition 

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help the person with hygiene and personal care 

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ease pain, fever and discomfort 

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assist the person to relieve problems such as diarrhoea, sore mouth or throat, skin sores, or cough

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talk with them if they are afraid, anxious or depressed

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follow simple procedures to prevent infection spread.

~ Family members and friends can do much to help relieve a person's pain and discomfort.


Infection control 
 

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Maintain good hygiene in the home. Always wash hands before cooking and eating and after going to the toilet or coughing. Wash dishes, linens and cloths with soap and water. Where soap is not available ashes may be used. Dispose of rubbish in containers or burn.

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Avoid contact with blood and other body fluids and wash hands immediately after handling soiled articles.

 

Skin problems 
 

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Wash open sores with soap and water, and keep the area dry. Salty water can be used as a disinfectant.

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For rashes, apply local remedies, oils such as coconut oil or calamine lotion.

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Bed sores occur when someone is too weak to move. Continuous pressure on the skin causes sores to develop. The person should get out of bed as much as possible. When a person cannot get out of bed help them to change position every two hours, from one side onto the back, then the other side and so on. Use soft pillows or many layers of cloth. Gently rub skin that is dark, reddened or irritated.

 

Sore mouth and throat
 

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Rinse the mouth with warm water mixed with a pinch of salt at least three or four times per day.

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Suck pieces of ripe tomato or a lemon for thrush if it is not too painful. 

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Eat soft foods that are not too spicy.


Fevers and pain
 

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Rub and gently massage sore muscles using oils. 

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For fever wash the body in cool water with a clean cloth or wipe the skin with wet cloths.

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Drink more than usual of water, tea, broth or juice.

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Remove thick clothing and blankets.

 

Cough, difficulty in breathing
 

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If someone has a bad cough or a cough lasting more than three weeks they should be seen by a health worker to check for pneumonia or tuberculosis. 

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Cover the mouth when coughing. If the person develops a new fever, chest pain, or coughs blood encourage them to see a health worker. 

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Lift the head and upper body on pillows to assist breathing and sit with the person to calm them if they are frightened. Keep windows open to allow fresh air in. 

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Sit up when possible. Raise the head on pillows to help the person to breathe.


Diarrhoea
 

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Treat immediately to avoid dehydration, either using oral rehydration salts or home made ORS (4 level teaspoons of sugar and 1/2 a level teaspoon of salt mixed with 1 litre of boiled water, or contact the local health facility). 

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Ensure that the person drinks more than usual and continues eating frequent regular meals such as porridge or mashed banana.

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Wash the buttocks and anus with warm soap and water after each bowel movement and keep the skin clean and dry.



There are often local remedies which alleviate fevers, aches, pains and coughs. and barks or roots which cleanse sores and abscesses. For example, abscesses and boils can be drawn using a compress made with sliced onion placed over the boil and then cleaned with salt water. Dry coughs can be relieved by juice made from sliced onion and sugar which is a good expectorant. In many countries traditional healers and women's associations or home care programmes are collecting information about remedies which alleviate symptoms and discomfort.

Medicine and supplies
Programmes have supplied home care teams with some or all of the medicines needed for carrying out basic treatment of common infections during home visits, or for giving to families (see page 7). 

However, medicine supply lists vary according to national recommendations and availability, and the professional qualification of the health worker or volunteer. Contact the National AIDS Control Programme and Ministry of Health for guidelines. See page 8 for information resource list.



AIDS action  Issue 28    6   Page 7   8  top of page

  Treatment, care and medicines

 

Basic Medicines and supplies
 

Illness 

Medicine 

Dosage

Diarrhoea:
acute

Oral rehydration
salts (ORS)*

Mix 1 packet with 1 litre of boiled water. Drink 1 cup after each loose stool. Throw the solution away after 24 hours if not used.

Diarrhoea:
persistent

Adsorbents e.g.
kaolin
Antimotility drugs
e.g. Imodium

Can be used to temporarily reduce cramps and pain but can prolong the illness by delaying the elimination of the organisms causing the diarrhoea. Should never be used with children under 5 years.

Fever and pain 

Paracetamol*

1 or 2 500mg tablets every 8 hours for adults, 1 for children 8-12 years, 1/2 for children 3-7 years, 1/4 for children 6 months - 2 years, 1/8 for children under 6 months

Skin problems
general e.g. rashes 

bacterial 
e.g. open sores

Calamine lotion*
Vaseline or oils*

Gentian violet* Potassium
permanganate

For itching or irritation, rubbed on skin as required 
For dry skin, rubbed on skin as required

1 teaspoonful of crystals dissolved in half a litre of water
A pinch of crystals in 1 litre of clean water, solution painted on sore area

Yeast infections 
(oral and vaginal) 

Gentian violet (mixed as for
bacterial infections)*

For oral thrush: as a mouth wash

For vaginal thrush: applied to vaginal area once daily for 3 days

Nystatin* 

For oral thrush: oral suspension 2-4ml daily, held in the mouth for at least 1 minute and then swallowed 

For vaginal thrush: pessary or cream applied to the vagina once or twice a day for 5-7 days

Bacterial infections
e.g. bacterial pneumonia salmonella, skin infections 

Antibiotics e.g.
cotrimoxazole

Every 12 hours for 7 days: 960mg for adults, 480mg for children 6-12 years, 360mg for children 12 months - 5 years, 240mg for children 2-12 months, 120mg for babies under 2 months

Penicillin or ampicillin 

Every 6 hours for 7 days: 500mg for adults, 250mg for children 2months - 12 years, 125mg for babies under 2 months

Parasitic infections
e.g. giardia
Metronidazole

Every 8 hours for 7 days: 400mg for adults, 200mg for children 6-12 years, 100mg for children 1-5 years.

Different antibiotics work for different infections, so they should never be used unless prescribed by a health worker. They have to be used for the full length of time specified to be effective. Check with the Ministry of Health or hospital pharmacy for recommended antibiotics.

Tuberculosis

Each country should have standard treatment regimens to follow. Commonly used drugs are:

lsoniazid 

300mg daily, taken orally before the morning meal. Store out of sunlight

Rifampicin 

450-600mg daily, available in tablets of 150-300mg, or in a combined form with isoniazid, taken orally on an empty stomach at least 30 minutes before the morning meal

Pyrazinamide 

1 1/2-2g daily, taken orally in morning with or without food

Ethambutol 

15mg per kilo daily. Not for use in children under 6 years old.

The first 2 months of treatment is based on a combination of any 2 of these medicines and requires supervised administration. The second phase of treatment is isoniazid with rifampicin for 4 months or isoniazid with ethambutamol for 6 months. Thiacetazone should not be prescribed for people known or suspected to be HIV-infected. It can cause severe skin rashes and other side effects which can be fatal.

Other supplies* 

Multivitamins 
Condoms
Gloves/plastic Bags
Soap
Dressings
Bed pans, Urinals

1 tablet daily, when adequate nutrition not available 


* Also supplied to volunteers and family


Key role for volunteers
In Zimbabwe, Red Cross volunteers are playing a key role in visiting people in their homes and training family members, with back-up from health centre staff and counsellors. The home care programme is run jointly with the national AIDS programme and local AIDS service organisations. 

The volunteers - mostly experienced women who work in their own neighbourhoods - have already taken part in the community-based health care course, including nutrition and hygiene, first aid, and common childhood illnesses. Interested and active volunteers are offered further training in HIV/AIDS, infection control, basic nursing care and common illnesses, nutrition, health education, counselling and support and tackling discrimination, as well as record keeping and patient assessment. In some regions, members of self-help groups for HIV-positive people are involved in the home care programme.

The training consists of two weeks of classroom-based teaching (talks, discussions, role play etc), two weeks of practical experience in local hospitals, and two weeks of working under supervision with trained home care givers. The volunteers work for four hours a day for three days each week, with use of a bicycle. if necessary, and are given a uniform and a small expenses allowance. A group of about 26 volunteers is managed by a supervisor, who meets with them at the beginning of each day to allocate visits.

Most clients accept the support because they know the volunteers and are not suspicious. The volunteers are able to identify possible patients, although most are referred from the hospital or counselling service. Any problems are discussed with the supervisor, who is able to set up a visit from the trained community nurse or a counsellor.

Catherine Marenga, Zimbabwe Red Cross Society, PO Box 1406, Harare, Zimbabwe.





AIDS action  Issue 28    7   Page 8      top of page

  Letter / Resources

 

Life after the hospital bed!
It all started with coughing, chest pains, fever and weakness. When I was taken to hospital they diagnosed TB. Later I was counselled and gave blood for an HIV test. A week later, two health workers visited me. They asked me if I wanted the test results. I felt powerless and started sweating allover. I was very frightened, because so many people with TB were dying on my ward. Hearing my HIV results was like being told that they had dug my grave and were waiting to bury me.

I chose to hear my result, which was positive. I was comforted by the counsellor and encouraged to face reality. He told me facts about AIDS. But how was I going to face my wife and the community? I was discharged from hospital and referred to a home-based care unit, where I could get TB treatment. I agreed to home visits and further counselling. I had not told my wife that I had been tested and still felt guilty, ashamed and responsible. But I had contracted HIV from somebody who had contracted it from someone else. In the end, I decided to tell my wife, and she also agreed to be tested for HIV. We found out that she is also HIV-positive, but our two young children have not been tested yet. When my parents found out they were worried but after being counselled with us became very helpful.

My AIDS counsellor asked me to come out in the open and take up community education. This was not easy at first but then I got used to it. My message is that abstinence is the best although proper condom use is an effective way to have safer sex. People with AIDS around the hospital catchment area have formed a group known as the Positive People's Hope. We encourage one another through working together, but are very short of funds. Home visits have also been cut down due to problems with funding. During the home visits, health care, food supplements and second-hand clothing are offered and people are encouraged to use the few resources available in the community.

Alan Nyirongo, c/o Zimba Muunick, AIDS Coordinator, Lumezi Mission Hospital, PO Box 530246, Lundazi, Zambia. 

Resources

HIV prevention and care: teaching modules for nurses and midwives includes basic home care and treatment guidelines for children (2nd edition).
Free in English (single copies while stocks last) from WHO/GPA, CH-1211 Geneva 27, Switzerland. French and Portuguese from WHO Regional Office for Africa, PO Box 6, Brazzaville, Congo.

AIDS home care handbook is a practical handbook for health care workers to help individuals, families and communities to manage AIDS-related problems at home.
In English, French, Portuguese, Kiswahili and Thai for Swiss francs 12.60 from WHO/GPA.

Caring for people with AIDS at home provides information for Red Cross volunteers to teach families to provide nursing care to people with HIV and other chronic illnesses. 
Free supplies in English, French, Portuguese and Spanish (Arabic in preparation) from International Federation of Red Cross and Red Crescent Societies, PO Box 372, CH-1211 Geneva 19, Switzerland.

Manual of group interview techniques to assess the needs of people with AIDS (WHO/GPA/HCS/95.2) provides guidelines for district level planners on planning services for people with HIV in the community through interviewing people with HIV and their carers.
Available from WHO/GPA

Life First! a practical guide for people with HIV/AIDS and their families is a booklet aimed at people living with HIV and AIDS, and includes practical sections on care and support. 
Free in English and Kiswahili from AMREF Tanzania, PO Box 2773, Dar es Salaam, Tanzania.

TASO Uganda: the inside story (WHO/GPA/HCS 95.1) describes the participatory evaluation of their care, counsel-ling and social support services. 
Available from WHO/GPA 

AIDS Action 24 is a special issue on counselling, and includes an article on care for the dying. 
Contact AHRTAG for copies.



 

Executive editor Nel Druce
Assistant editor Sian Long
Design and production Ingrid Emsden
 
Editorial advisory group Calle Almedal, Kathy Attawell (AHRTAG sabbatical leave), Nina Castillo, Professor E M Essien, Dr Sam Kalibala, Ashok Row Kavi, Dr Ute Küpper, Professor Keith MacAdam, Dr Tuti Parwati Merati, Dr Claudia Garcia Moreno, Dr Chandra Mouli, Dr Anthony Pinching, Dr Peter Poore, Barbara Wallace, Dr Michael Wolff
 
Publishing partners ABIA (Brazil) Colectivo Sol (Mexico) ENDA (Senegal) HAIN (the Philippines) Consultants based at University Eduardo Mondlane (Mozambique)
 
AHRTAG's AIDS programme is supported by CAFOD, Charity Projects, Christian Aid, FINNIDA, HIVOS, ICCO, Memisa Medicus Mundi, Misereor, Norwegian Red Cross, Oxfam, Redd Barna, Save the Children Fund, SIDA, UNICEF and WHO/GPA.

 

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AIDS Action
The International Newsletter on AIDS Prevention and Care


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