AIDS action Issue 50 Page 1 2
Issue 50 October - December 2000
Supporting community carers
Ideally care for people living with HIV/AIDS is provided along a continuum of care from hospital to home-based care. In many situations, most care is provided in the community, including people's homes.
Many people providing this care are not professional carers or health workers, but are volunteers, family or friends. Although much of the literature talks about "coping strategies" the reality is that in many communities carers are struggling to cope with the enormous need for care and the lack of resources, support and training needed to provide it.
This issue of AIDS Action looks at practical ways to strengthen care in the community. This includes providing practical training and appropriate information to carers (see page 3), appropriate resources such as home-based care kits (see page 6) and emotional and spiritual support (see page 7). This issue also looks at ways to encourage volunteers and especially to increase the number of men involved as carers (see pages 4 and 5).
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In this Issue
Over 40 million people are thought to be infected with HIV, 95% of whom are in developing countries. In many countries, hospitals cannot cope with the large numbers of people living with HIV/AIDS, so they often send patients home to be cared for in their community.
Many hospitals run outreach programmes where care for people living with HIV/AIDS is provided in the community or - particularly for very sick people - in people's homes. This includes established discharge and referral systems between the hospital and the community. These programmes have trained outreach workers equipped with basic medicines. But such programmes often lack supplies and schemes cannot reach families beyond the hospital's local area.
Home-based care programmes are also run by NGOs, churches or groups of people living with HIV/AIDS. Their approach is often less medical and offers emotional and spiritual support for patients and their carers. They are more flexible and can engage with local communities to support HIV prevention by tackling the stigma and denial around HIV.
Home-based care programmes are not always linked with hospitals. This makes it difficult to refer patients with acute conditions, which can be better cared for in hospitals. It can also make it difficult to know who has been sent home from hospital and needs to be visited.
Who are the carers?
In outreach programmes volunteers usually work alongside trained carers. The volunteers are usually community members, family or friends. There is also a gender perspective to home-based care - most care is provided by women and girls. Many community or home-based care programmes find it difficult to cope with the number of people in their community who are in great need. In many communities, carers, like the people they care for, lack money and basic essentials such as sufficient food and access to a clean water supply. They can also feel powerless given the enormous amount of HIV-related suffering and grief. This can lead to "burnout" where carers are no longer emotionally or physically able to provide care. On top of this, the stigma of HIV still prevents many family carers from asking for help and getting support.
What can be done?
Carers benefit from appropriate information and training (see page 3). Integrating support for TB patients into community care programmes can help as carers feel they have something practical to offer that works (see page 4). As more carers struggle to cope and as more women fall ill it is important to involve men as carers (see page 5). Providing basic equipment such as that included in home-based care kits can also help (see page 6).
Support for family carers
Molly Tumusiime describes how a project in Uganda trains family members to care for people living with HIV/AIDS.
Care at home at home is often given by elderly grandparents, aunties, and next door neighbours. As family carers are often untrained, they, and the people they are caring for, are under a lot of stress and find it difficult to cope. The Mildmay Centre for AIDS Palliative Care has developed a training programme that gives family carers support and teaches them to
provide simple basic nursing care.
prepare and provide nutritious food.
supervise and administer oral medications.
handle infected waste safely.
avoid cross-infection of illnesses and infections such as skin infections, malaria and TB.
The Mildmay Centre runs free workshops for carers on topics that were identified in discussion with the carers. Topics include the physical care needs of HIV/AIDS patients, psychological and spiritual care needs of HIV/AIDS patients and their carers, and the social-economic needs of families affected by HIV/AIDS.
The physical care training includes lifting and handling weak patients, exercises and massage. Carers also learn how to care for eyes, mouths, wounds and skin, and how to prevent pressure sores. They learn about preparation of safe water for drinking and about nutrition for sick adults and children, especially those who have difficulty eating and swallowing, nausea and vomiting, diarrhoea or lack of appetite.
Nurses facilitate the workshops, with support from other staff including doctors, counsellors, an occupational therapist, a nutritionist, a physiotherapist, a pharmacist and a pastoral carer.
As well as improvements in physical care, such as bed turning, patients whose carers had attended the workshops noticed improvement in attitudes towards care and communication with carers.
Carers found that participating in the workshops reduced their sense of helplessness, frustration and isolation. This increased their confidence in taking care of the patients. It Improved the standard of care they were able to give and the quality of life of their patients. The workshops have resulted in the development of a self-help client support association with plans of capacity building for care. The association plans to set up income generating activities in order to reduce the financial cost of HIV/AIDS.
The Mildmay Centre
PO Box 24985
E-mail: [email protected]
Safe disposal of waste
Always wash hands before and after each activity.
Disposal of sputum
Encourage the patient to spit into a container with a lid.
Always keep the lid of the container closed when it contains sputum.
When the container needs emptying, carefully empty the contents in a pit latrine. If you are disposing of it elsewhere, add a disinfectant (preferably Jik with 10% calcium hypochlorite if available) to the sputum before disposing of it.
Wash the container thoroughly with soap and water ready for the next use. If the sputum was not disinfected put the container in boiling water for 20 minutes before reusing.
Changing bed linen for an incontinent patient
If possible pad the patient with pads/pampers. If these are not available use clean old clothes, which should be washed thoroughly and dried before reuse.
Cover any cuts and bruises on your skin with waterproof adhesive plasters when changing the patient's soiled linen.
Wear gloves if they are available, but if you don't have gloves use polythene bags to protect your hands.
Disposal of soiled dressings
Always ensure that before dressing the patients' wounds you have got:
a polythene bag to put used dressings into.
dressing packs and solutions.
Wear the sterile gloves when you are cleaning the wound, applying the new dressing and disposing of the used dressing.
Burn or bury the soiled dressings.
Fiona Macdonald, Director of CHoiCE (Comprehensive Health Care) in the Northern Province of South Africa, describes how volunteers can reach families who need support.
CHoiCE supports home-based care for people with chronic and terminal illnesses, including HIV and TB, in impoverished rural communities. As a small NGO, CHoiCE depends on volunteers to help families in the region. The programme's success depends on the community taking part in the selection and support of volunteers.
Volunteers work in the villages in which they live and meetings are held in each village with community members including traditional healers and religious leaders to discuss the aims of the programme.
Asking people who are living in poverty to become volunteers is challenging, and this is discussed at the meetings. It is made clear that voluntary work is not a guarantee of employment but that volunteers may learn new skills, which could lead to career opportunities as health workers. CHoiCE shows its commitment to the volunteers by providing thorough training.
The volunteers receive ongoing support from CHoiCE staff and their home communities and have a strong link with local health workers. The volunteers are formally introduced to the staff and counsellors at the district hospital and clinics and receive a letter saying that they have had appropriate training and that they work closely with the clinical staff. Family members provide most home-based care, so the volunteers teach the family to provide basic care and offer them emotional and practical support. Technical procedures are limited and this reduces the risks involved for carers but careful attention is paid to issues like confidentiality.
'Working as a volunteer without payment is not hard because I understand how my community members feel because I am one of them and I want to help'.
Miriam Ngobeni from the Lowveld region
The volunteers do five training courses:
HOPE - understanding HIV, stigma and confidentiality: five days
Basic counselling skills: two weeks
Basic home nursing, including demonstrating techniques to family members: two weeks
First Aid: three days
TB/DOTS: five days
Volunteers receive a certificate for each course they complete, and during the training meals and money for transport costs are provided. The volunteers are given caps, shirts, jeans and umbrellas, which serve as a uniform and this raises their profile locally. They also receive a small treatment box, which contains the gloves, cloths and soap they use when they are providing care.
Monthly support groups are held in each village. The work is stressful, particularly for volunteers who are HIV positive. Having support from their communities and being able to share problems eases some of the strain. By the end of 2001 Choice had trained 217 volunteers.
Integrating HIV and TB care
After their TB/DOTS training, volunteers care for people with TB through the local DOTS programme. TB is the most common cause of death of HIV positive people and approximately 40 to 50 percent of TB patients are infected with HIV. Families feel more able to talk about TB than HIV as there is much less stigma, and volunteers are welcomed into homes to assist with TB treatments. This is often the part of the work that volunteers enjoy most as they feel that they are doing something positive and can see an improvement in people's health. As the relationship with the families develop, the volunteers begin to talk about HIV and can give support before and after testing.
Recruiting male volunteers
The Blantyre Christian Centre in Malawi runs an HIV/AIDS project called Intervention Counselling and Care (ICOCA). Clive Bacon, ICOCA project manager, describes how male volunteers are recruited.
Since 1996 we have trained home-based care volunteers to help care for chronically sick patients, and to promote the prevention of HIV/AIDS through community discussions. At first the volunteers were all women, but in 1999 we decided that we also needed male volunteers because:
male clients find it easier to discuss sensitive issues such as sexually transmitted infections (STIs) with a man.
male volunteers can bathe male clients.
men make a lot of the decisions in their families and communities.
Male volunteers can use their influence to promote home-based care, reduce stigma towards people living with HIV/AIDS, and get people to change their behaviour. We were determined to have male volunteers, so we had to find ways to overcome many difficulties.
Many men do not want to do voluntary work
Recruit the few men who are willing to work without payment and let them set an example that other men can follow.
Make sure men coming forward are doing so voluntarily, and not because of pressure or threats.
Volunteers may have unrealistic expectations that lower morale when they are not met
Be open from the start about what resources and incentives are being offered.
Have a signed statement between the project and the volunteers defining roles, responsibilities, terms and conditions.
Men may not be available due to other responsibilities and employment
Focus on men with flexible working hours, for example those who run their own small businesses, or who are not formally employed. This has led us to include younger men (in their early twenties) as care volunteers.
Be reasonable - this is voluntary so don't expect volunteers to work a 36 hour week.
Caring for the sick can be seen as degrading
Introduce men to other volunteers so they can hear about and see the voluntary work.
Recruit men who are respected in the community - one of our best male volunteers is a village headman.
Of the 12 men in the first group of male volunteers in 1999, 10 are still active volunteers. We now have 43 male community-based volunteers out of a total of 114.
Blantyre Christian Centre
PO Box 2502
Tel: +265 838246
Fax: +265 674372
ICOCA is funded by USAID
John Grant is 34 years old and married with three young children. He lives in Blantyre, Malawi's main commercial city, where HIV prevalence is around 30%. John has been working as a home-based care volunteer for a year.
John runs a market stall selling dried fish. Being his own boss, and having a supportive wife who helps run the market stall, gives him time to do voluntary work. John did two weeks training with the Blantyre Christian Association after he responded to a call for male volunteers at a public meeting organised by local leaders in his community. He was motivated by his Christian faith, and a desire to help improve his community.
John visits clients regularly offering counsel, discussing problems with the family, and giving encouragement. He provides practical care by bathing patients and preparing meals, and also refers clients to the project nurse or local health facilities. The major challenge john says he faces is that many of his clients lack food and money to buy medicines.
Some men have questioned and even mocked John's involvement in home-based care. 'Some say that I must be getting something, they just don't believe I do this without payment'. Others think that such work isn't for men. But John knows from experience how much his clients value his work.
Home-based care kits
Providing basic equipment and advice on healthy affordable nutrition are the key principles of a new initiative in South Africa.
Home-based care programmes need homes with basic facilities and equipment for care. The reality is that most homes do not have such facilities and for many people home is a small shack or one roomed building where the person needing care has little privacy and the extra costs of care are a great burden on their family. "Buddy teams" visit people's homes if they are close to health facilities, but apart from a few basic medicines these teams offer little practical support.
The Centre for the Study of AIDS at the University of Pretoria has developed a kit to improve the quality of home-based care. The kits include toiletries, items for personal hygiene, household cleaning materials and basic medication. The kits are lightweight, transportable, heat and waterproof, and biodegradable.
The kits also contain washable cards that explain how to use all the items and have telephone numbers to call for help and advice. Having the kit at home may help the ill person to care for themselves and encourage creative use of things in the home or community that may not have been considered for care before, such as using inflated plastic bags as pressure point supports.
Hawkers (people who sell food locally) will also be trained both in the use of the kits and in basic nutrition so that they can give advice to care givers about the most nutritious foods available and how to prepare them. Hawkers are well known in the community. Linking hawkers to homes is especially important when the care givers are young people who may lack confidence or experience in dealing with money and food preparation. The programme will work with hawkers associations to find hawkers who are keen to do this work and it is hoped that they will get community recognition as 'nutritional advisers'. They will be trained in home-based care, nutrition and in supportive nutrition for people with debilitating illnesses. They will also be trained in the care and support of children and child-headed households.
The kits are replaced when needed, and unused items are either kept by the families or returned. This is more cost effective than replenishing the kits. Kits cost about ZAR 120 (US$11/GB£9). Sixty kits have been piloted and well-received in rural and urban areas. After further testing it is hoped that the kits will be available from summer 2002. They will be funded by public-private partnerships - companies will buy the kits and give them to employees caring for relatives at home.
The kits will be distributed through the local clinics, church organisations, care NGOs and CBOs and other community groups. Their use will be carefully monitored so that they can be adapted as the needs and the demands for care are better known.
Centre for the Study of AIDS
University of Pretoria
Tel: +27 12 420 4391 Fax: +27 12 420 4395
E-mail: [email protected]
Contents of the home-based care kits
painkillers to relieve headaches and aching bones
multi-vitamins as nutritional supplements
antiseptic cream to apply to broken skin or lesions to ovoid infections
calamine lotion to stop the itching associated with shingles
sterile gauze patches to cover open sores or wounds
salt and sugar to make oral rehydration solution
liquid paraffin to treat constipation
soap to supplement family toiletries
aqueous cream to soften and moisturise the skin and stop chapped skin
face cloth for personal use by the client
toothpaste and toothbrush for personal use by the client
sponges for washing the client
towels to supplement household linen
bicarbonate of soda to mix as a mouth wash and for general dental hygiene
chlorhexidine to mix as a mouth wash
gloves and wiping cloths to clean the body
Jik (bleach) to disinfect spilled blood, vomit and sputum
Straws for patients for whom drinking is painful and difficult
Drinking cups to give liquid medication
Tape to keep bandages and dressings in place
Linen savers to absorb diarrhoea and night sweats to save sheets and bedding
Note book and pen to record medications, write down feelings and note questions
to ask buddy team or clinic visitors
Care givers can avoid burnout if they ask for and get support for themselves.
Often caregivers give up the stress and workload is too much to cope with. Carers cannot give what they do not have, but when they give up, their knowledge and experience is lost. Delegating is one way carers can ensure resources and responsibilities are shared, so that they can continue to give care, without destroying themselves in the process.
How to delegate
Discuss the current and future needs of the person you are caring for with them and their family. Be sure to involve the person you are caring for as much as possible. This includes letting them know when you will be there for them, asking them about their needs and feelings, listening to them, and keeping them informed about medical aspects of their illnesses.
Be realistic about what you can offer, this way you can avoid guilt and disappointment. All patients and carers (family, volunteer and professional) need emotional support. People such as co-workers, club members, churches, friends and family members can often help - they form a support network. For example, if you are a family carer you can seek practical support by asking a friend to come by and sit with your loved one so you can get out of the house for a few hours and take care of yourself.
Give tasks to the support network. Be clear about what you are asking them to do. Explain that if they agree to take care of the person, they cannot break that agreement unless they arrange for someone else to be there.
Take care of long-term planning, such as legal and financial needs in consultation with the person you are taking care of. Try to keep the family and close friends informed and involved in these issues. Often financial aspects and writing wills are neglected. (See box.)
This article is based on a section of The Caregiver Manual by Lenette Olivier, David Patient and Neil Orr. It is used in a one-day training programme. For a free copy of the manual contact: David Patient, PO Box 13043, Riverside, Nelspruit 1200, South Africa
E-mail: [email protected] co. za
Religious organisations playa central role in many communities and are an essential part of support networks for people living with HIV/AIDS and their carers. Religious faith often motivates people to provide practical care for people who are sick. This includes volunteering to care for people with HIV/AIDS. Religious faith also encourages people to offer emotional and spiritual comfort, which is a type of counselling. This is especially important when the practical reality is difficult to face because there is little or no access to treatment, and the burden of grief in the community is very large.
Supporting the spiritual element of life through counselling can help people share burdens, express their grief, tell their stories and face the future with hope. Home-based care also gives opportunities for carers and counsellors to start discussions about how HIV/AIDS can be prevented. Good counsellors, whether trained or untrained, from a religious faith or not, understand that they are being invited into the living space of other people. The conversations that happen there are often painful and difficult, and they know that their role is to support not to judge.
Community counselling about HIV/AIDS can take place when people gather to worship and pray. As well as being a source of support, religious organisations can encourage the prevention of HIV and reduce the stigma.
With thanks to Ian Campbell of the Salvation Army
For more information see AIDS Action 49 on Faith-based approaches
Making a will
A will is a written document that makes clear what a person wishes to happen after their death. Making a will is easy. But many people do not make one, because they think that it is difficult or they believe that it will make them die more quickly.
A will must be made in accordance with local law, although the principles are similar everywhere.
A will can
ensure that property, land and valuables are passed on to people that the person would like to receive them.
make clear who has custody of children, and if there is no partner, appoint guardians.
specify who will ensure the will is acted upon (trustees or executors).
provide instructions about funeral arrangements.
To be valid, a will must be
written in permanent ink or typed.
signed by the person and clearly dated.
witnessed by persons present at the same time as signing and dating. The number of witnesses required depends on the country. Those who will benefit from the will should not be witnesses.
written when the person is of sound mind and is not being forced to do so by someone else.
AIDS action Issue 50 7 Page 8
Letter / Resources
Scovia Kasolo, a former nurse reflects on the impact of an HIV diagnosis on her as a health professional and recognises that people giving support are often the last to receive it.
Living with HIV is very challenging, but in some ways the situation is even worse for health care workers. Accessing care and support is very difficult. Before I told anyone about my HIV status I used to prescribe treatment for myself, even injecting myself, because I was afraid of being labelled as an HIV positive person. I felt that if I went to the clinic, other health care workers would suspect that I was HIV positive.
A person diagnosed with HIV needs a support system to be able to cope, but this support is rarely available for health care workers. Because we provide care it is assumed that we are well informed and know how to care for ourselves. But many of us live in denial and isolation, which causes stress and burnout.
Besides the challenge of stigma, health care workers living with HIV face emotional stress. Every time we see patients suffering, we are reminded of the pain we will go through when our turn comes. Unfortunately there is no special clinic for infected health care workers so it is hard to access counselling.
Some health care workers living with HIV fear repercussions such as losing their job, which can lead to them keeping quiet and succumbing to the disease in a hard way. On the other hand, when clients learn that a health care worker is infected they all tend to turn to you because they think that you understand them better. Yet you have no support for yourself. I would urge health care workers to seek ongoing support and counselling.
Scovia Kasolo, National Community of Women Living with HIV/AIDS in Uganda (NACWOLA),
E-mail: [email protected]
AIDS Action 41 is about caring for people who are very sick, including simple techniques for nursing at home. Available free from: Healthlink Worldwide.
AIDS Action 38 is about the impact of HIV on health workers. Available free from: Healthlink Worldwide.
Living positively: Nutrition Guide for people with HIV/AIDS Developed through weekly nutrition courses for groups of people living with HIV in Zimbabwe.
Available US$3 for a printed copy, free for an Acrobat pdf file by e-mail, from: Marlou Bijlsma, PO Box MP 600, Mount Pleasant, Harare, Zimbabwe. Tel: +263 4 336 421
E-mail: [email protected]
Positive Health Guidelines is about physical, nutritional, psychological and spiritual support for people with HI\/: The booklet is available in the II official southern African languages and in Portuguese and English.
Available free from: David Patient PO Box 13043, Riverside, Nelspruit 1200, South Africa
E-mail: [email protected]
Caring for carers: Managing stress in those who care for people with HIV and AIDS and Reaching out and scaling up: Eight case studies of home and community care for and by people with HIV/AIDS
Both available for US$15 from: UNAIDS, 20 Avenue Appia, CH-1211 Geneva 27, Switzerland. Tel: +4122 791 3666 Fax: +4122 791 4187
E-mail: [email protected]
Also available free on the UNAIDS website at www.unaids.org
Southern African AIDS Training Programme (SAT) directories are listings of support groups for people living with HIV/AIDS in Zimbabwe, Malawi and Zambia.
Available free of charge from: SAT, P O Box 390, Kopje, Harare, Zimbabwe
E-mail: [email protected]
Under the mupundu tree: volunteers in home care for people with HIV/AIDS and TB in Zambia's copperbelt (number 14 in the Strategies for Hope series)
Available for UK£3.50 from: TALC, P O Box 49, St Albans, Herts, AL1 5TX, UK Tel: +44( 0) 1727 853869 Fax: +44( 0) 1727 846852
E-mail: [email protected]
Health and Development Networks Provide electronic newsletters, including information about home and community care for persons living with HI\/.
E-mail: [email protected]
Commissioning Editor Joanne Manchester
Editor Melaina Barnes
Design and production Ingrid Emsden
Editorial advisory group Kathy Attawell, Teresita Bagasao, Dr Nina Castilio-Caradang, Nancy Fee, Tim Frasca, William Cutting, Winnie Mpanju-Shumbusho, Jiang Zai-Fang
Aids Action Publishing partners HAIN (the Philippines) KANKO (Kenya) SANASO Secretariat (Zimbabwe) ENDA (Senegal) ABIA (Brazil) Colectivo Sol (Mexico) Consultants based at University Eduardo Mondlane (Mozambique)
AHRTAG's AIDS programme is supported by CAFOD, DfkF/JFS, HIVOS, ICCO, Irish Aid, Misereor, State of Jersey
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