|Caring with Confidence - Practical information for health workers who prevent and treat HIV infection in children (AHRTAG, 1997, 60 p.)|
|Section 4. Issues for health workers|
· Health workers face increased pressure and stress because of HIV/AIDS.
· Following recommended safety precautions can reduce the risk of transmission at work.
· Health workers need to consider how to talk to parents and children about HIV, and to help them plan for the future. Living positively with HIV should be emphasised for children as much as for adults.
This Section discusses strategies to address some of the important issues that health and community workers may be concerned about, including talking to caregivers about difficult subjects, lack of resources, stress and workload, and fears about their own safety.
The increase in the number of women and children with HIV and AIDS is creating additional demands on health services and on health workers. Health workers face many pressures. These include:
· shortages of staff as colleagues become sick themselves because of HIV
· lack of skills or time to diagnose and manage children with HIV
· lack of resources for diagnosis and treatment including basic drugs for managing common infections
· higher numbers of children who require treatment and who fail to respond to standard treatment
· absence of services for referral for counselling, testing, treatment or community-based care
· overcrowded hospitals
· dealing with families' worries, fears and concerns and with death in young children on a daily basis
· stigma because of working with mothers and children with HIV
· fears about their own risk of HIV infection
· powerlessness because of lack of knowledge and few available resources to do very much, and feeling that little is being achieved despite their best efforts.
Heavy demands on health services add to the pressures on health workers.
Sean Sprague/Panos Pictures
Health workers need opportunities to share information and provide support to each other.
All these contribute to health worker 'burn out' and may result variously in increased sickness, absence, early retirement, general stress and unhappiness at work. Health workers may feel sad, helpless, angry and tired. It is important for them to be able to talk to others about how they feel and to seek help when they need it.
Other steps need to be taken to reduce the pressure on health workers at national, district and primary or local levels.
At a national level, these steps could include:
· encouraging support for people with AIDS groups, with care and support as the main focus, and encouraging better integration of care and support activities with prevention activities
· developing clear policies and guidelines for diagnosis, treatment and care of children with HIV and AIDS
· promoting information dissemination, education and awareness-raising about HIV and AIDS in children
· continuing support for effective management of childhood illness
· emphasising prevention of infection in women by promoting safer sex, ensuring blood safety and avoiding unnecessary blood transfusions, and supporting effective STD control
· promoting children's rights and services for children, and models of care that encourage social integration and address discrimination
· implementing policies to ensure protection of children against sexual abuse and exploitation
· identifying interventions and therapies that work, and promoting them
· aiming for better discussion and knowledge of risks of infection at work and implementation of workable safety guidelines.
Careful handling of needles and other sharp instruments can reduce the risk of HIV transmission to health workers.
Heldur Netocny/Panos Pictures
At district level:
· supporting community groups and home-based care programmes
· providing training and ongoing support for health workers
· establishing links with sectors outside the health service
· adapting guidelines to the local situation and making them available to health workers
· involving members of the community (including people affected by HIV/AIDS) and primary health care workers in planning activities
· allocating resources carefully and planning services, especially providing essential drugs and supplies such as gloves
· developing systems to improve the continuum of care, referral and support for families providing home care, including encouraging links between district teams and NGOs.
At primary and community level:
· developing mechanisms for staff to share new information and provide support to each other, to help them talk about their problems and feelings, and to make their work more rewarding
· providing counselling services for health workers
· forming integrated home care networks involving community members, health workers and other service providers to improve care, provide mutual support and establish realistic expectations
· creating working links with NGOs, support groups, churches, and home and community care organisations
· developing training materials on home care and encouraging information sharing between support groups, community organisations, family members and health workers.
Health personnel, especially nurses and midwives, are often worried about the risk of HIV infection at work. There have been reports of health workers refusing to deal with infants and young children with HIV and of laboratories refusing to handle specimens.
The risk of transmission from an infected child or mother to a health worker is very low if sensible precautions are taken/especially methods to reduce the risk of injuries from needles and other sharp instruments, and safe procedures for sterilisation, decontamination and handling specimens.
But even where it is not possible to follow recommended procedures, the risk of an infected mother transmitting HIV to a birth attendant or of an infected infant transmitting HIV to a health worker is still low. The risk of infection through needle-stick injury is estimated at 1 in 300.
There is a risk of HIV infection if health workers come into contact with blood or other body fluids through:
· open cuts or sores on their skin
· accidents such as needle pricks or blood splashes
· carelessness such as dangerously discarded needles or blades
· poor practices such as reuse of equipment without sterilisation or disinfection.
Factors increasing risk include:
· poor lighting
· emergency situations
· lack of gloves and other protective barriers
· lack of disinfectants.
It is especially important to provide midwives, birth attendants and surgical staff with gloves and protective clothing as they may be at higher risk, because there is a large amount of blood at delivery and during operations.
These precautions minimise the risk of transmission of HIV (as well as of hepatitis and other blood-borne diseases) and should be used when dealing with all patients regardless of their HIV status:
· careful handling, cleaning and disposal of sharps (needles, scalpels, blades), including properly placed puncture-resistant sharps disposal containers that are readily accessible, disposal of needles without recapping, without removing from the syringe and without breaking or bending by hand
· handwashing with soap before and after procedures
· using protective barriers such as gloves, gowns and eye masks to prevent direct contact with blood and other body fluids
· disposing safely of waste contaminated with blood and body fluids
· careful handling of soiled linen
· cleaning up spills of blood and body fluids with disinfectants
· covering broken skin, sores or cuts with a waterproof plaster or dressing before contact with patients. It is especially important that midwives and birth attendants cover insect bites, open wounds, sores and cuts on their hands and arms before attending a delivery.
In settings where resources are limited - for example, where gloves are in short supply - supplies should be used rationally. Gloves should be kept for activities where there is the greatest risk of exposure, such as delivery, rather than for other procedures such as giving injections. Gloves should be changed between patients. If they are reused, only reuse intact gloves and wash and sterilise between uses.
Tuberculosis (TB) is spread as infectious particles through the air, either directly from person to person via coughing, or indirectly from dust on bedding, dressings, floors. For this reason, it is crucial to identify, isolate and treat people with TB to minimise risks to others. Proper ventilation, increased sunlight, and good working practices can also help to reduce the risk of infection.
The rise in clinic and hospital patients with HIV is mirrored by a rise in patients with TB. In many countries, one in three or one in two patients with HIV infection also have TB. These infections interact. Patients with pulmonary TB are infectious to others, especially to those with HIV. People who have a latent TB infection have a high chance of that infection being reactivated if they are also infected with HIV.
Health workers should take the following precautions:
· isolating infectious patients
When a person is suspected of or diagnosed with TB, he or she should be isolated from other patients who do not have the disease. He or she should also be isolated from patients and staff known to have HIV infection during the initial phase of their treatment. Patients suspected of having TB who are known to be infected with HIV or to have AIDS should not be admitted to a TB ward until their TB treatment has been started.
· making the environment safer
Accommodation for people with TB should be kept well ventilated with doors closed and windows to the outside open, to reduce the chance of airborne infection. Exhaust fans are useful for moving air from tuberculosis wards and isolation rooms to the outside. In colder climates it may be necessary to keep windows closed, but fans blowing air outside may be useful.
Sunlight is a cheap source of ultraviolet light which kills airborne TB micro-organisms. If possible, patient rooms should have large, uncurtained windows.
· safer working practices
Working methods should avoid creating dust which may contain TB micro-organisms. Carers should keep the patient's room aired and should avoid dry sweeping and shaking out soiled bedding and clothing indoors. Soiled bedding and clothing should be washed immediately using soap and hot water.
Out-patient clinics where people are screened for TB should be well ventilated, and sputum specimens should be collected in an area away from general waiting rooms and other people.
Infectious patients with uncontrolled cough should wear masks when being moved around the hospital or clinic. Alternatively, patients can use a clean handkerchief or cloth tied over their nose and mouth. Surgical or other masks will reduce infection risk from coughs and sneezes when worn by patients with pulmonary TB but are no help in stopping infection when worn by anyone else. For this reason it is not normally recommended that masks are worn by staff and visitors.
If possible, health workers with open cuts and sores should avoid working where direct contact with patient's blood or body fluids is likely.
Risk of HIV and hepatitis transmission can also be reduced by eliminating unnecessary injections, episiotomies, and laboratory tests. In Uganda there is evidence that the main risk of occupational transmission is needle-stick injury to midwives performing stitching after episiotomies in conditions of poor lighting.
After delivery the placenta should be handled as little as possible and burned or buried.
It may also be possible for health workers to obtain more regular or additional supplies by finding out what is available through government and non-governmental sources, seeing if patients and their families can contribute, improving procurement, ordering and storage systems.
Care after exposure
If a health worker has been exposed to blood or body fluids through splashing, he or she should wash the area immediately with soap and water. Splashes to the eyes or mouth should be flushed clean with water or saline solution.
Wounds from needle-stick injuries should be cleaned with soap and water.
WHO recommends that incidents where health workers have been exposed to potentially infected blood and body fluids should be reported to the supervisor or manager, and that health workers be offered testing and counselling. In some countries, health workers are offered post-exposure prophylactic treatment with antiretroviral drugs, but this is not available in many places. There are also questions about the effectiveness of post-exposure prophylaxis.
Health workers play an important role in helping caregivers to cope when a child has HIV and AIDS and in helping to ensure that the needs of children affected by HIV and AIDS are considered. In addition to providing practical and emotional support to carers, specific issues which health workers may need to deal with include:
· emphasising the importance of living positively for children with HIV and AIDS as well as for adults
· helping parents to talk to a young child about HIV and AIDS
· talking to the mother and other members of the family about the fact that the child may die at a young age, and helping them to come to terms with the death of a child or the fact that their child is dying
· discussing with parents who have HIV or AIDS what will happen to their children after they die.
Health workers can provide practical and emotional support to carers of children with HIV.
Children with HIV and AIDS should live as normal a life as possible.
Children living positively
Carers need to be aware that, with proper care, nutrition and treatment, young children can survive for several years and will not be sick all the time. Infants and young children with HIV and AIDS should live as normal a life as possible, participating in family and community activities and playing with other children.
Talking to children about HIV and AIDS
These basic guidelines may help when talking with young children.
· Be honest in answering questions.
· Tell the child enough but do not burden him or her with information about things he or she has no control over.
· Bear in mind that young children have a different concept of time - to a young child two years is a very long time.
· If you are telling a child he or she has HIV, you do not need to describe what it is in detail, but it is important to be honest about the fact that it may make the child sick from time to time.
· Be prepared to answer questions such as: 'Will it hurt? Will I die?'
· When children are close to someone who has AIDS or HIV, try to give them a message of concern and hope. When a parent is ill, the child's anxiety and concern will be much greater, but the message can continue in the same vein. 'Yes, Daddy is sick but he is doing all he can to keep himself strong and healthy and right now, things seem to be okay.' If the disease progresses and the person is obviously becoming more ill, it is appropriate to discuss this openly with the child. 'We are still hoping Daddy will feel better soon, but he may not. What do you think about that?'
· It may be helpful to discuss ideas about death and dying in general, outside the context of the sick individual. The possibility of the person's death should also be discussed frankly with the child.
Confidentiality and children.
Confidentiality is a difficult issue in relation to children.
The mother or parents have to decide whether or not anyone else is told that the child has HIV and who to tell. What she or they decide to do will depend on circumstances. Telling others, such as relations and neighbours, may have benefits such as extra help and support. But it could also place the parents and the child at risk of stigma, rejection and discrimination.
If the child's mother or both parents have died and the child is being cared for by another relative, should the carer be told that the child has HIV? Should the grandmother who is caring for a child with HIV be told of the child's status if the mother is alive at home?
Support of friends or neighbours can help mothers to cope with the illness and death of a young child.
Crispin Hughes/Panos Pictures
Suggested steps in answering children's questions:
1. Listen carefully to the question.
2. If the meaning behind the question is not clear, or to better understand what the child is trying to ask, you could say, 'I wonder where you heard about that?' or 'Do you have any ideas what the answer might be?' This may give you more information to help answer the question.
3. Give simple, concise answers. Complicated words and lengthy replies may not be understood or the child may stop listening.
4. Check to see if the child understands.
Dealing with illness and death in a young child
Talking to the mother
Telling a mother that her child will die or is dying is probably one of the most difficult things a health worker or counsellor will ever have to do. There is no easy or right way to do this, and it needs to be handled very sensitively and gently. In most cases, telling a mother that her child has HIV also implies that she herself is infected.
It may help to think about the following issues.
· Where are you going to tell her? The place should be quiet and private and somewhere where she will be able to talk about her feelings comfortably. You also need to make sure that you allow enough time for her.
· How are you going to tell her? What words will you use? What is her situation? How do people in your culture feel about the death of a child? How will you bring the subject up? You could start by asking her how well (or ill) she thinks the child is and what concerns and worries she has about him or her. In cultures where talking about anticipated death is taboo, a health worker could instead say 'your child is likely to keep getting illnesses and each illness is likely to be more serious than the one before'.
· What might her emotions and feelings be? This can prepare you to talk to her about them. She may, for example, feel guilty if she thinks she is to blame. She may be sick herself and her child may have been her main reason for living.
· What support does she have available? Can she talk about it with her partner, parents, friends or neighbours? Or are they unaware of the baby's HIV infection? She may experience feelings of great sadness, hopelessness and despair. Who can she discuss her feelings with? Make sure she knows she can come back and talk to you again. She will be in shock and will need time to think. She may want to come back and talk about her feelings and any worries and questions later.
· How can she tell others? The mother may or may not decide to tell her partner, older children or other relatives about the baby's illness, but she needs to be helped to consider whether this is wise and how she will do it.
· What suggestions can you make to help her? Can you put her in contact with other women in the same situation? Are there any support groups for women and mothers? Is there a community care and support programme she can be helped by?
· What practical concerns or questions might she have? This can prepare you to answer them. For example, she may want to know how long her child will live, whether he or she will be in pain, what she can do to make things easier for the child, whether he or she will need to go to hospital. She may be worried about hospital or funeral expenses.
Looking after a child who is dying is stressful and upsetting and adds to the burden of household work for women. Counselling can help them to cope and to solve problems such as identifying someone else to provide practical support.
When death is near, the family of the child will need emotional support, especially if they find it difficult to accept what is happening.
Health and community workers can offer and provide support to families, listening to them, helping to share their grief and giving comfort, as well as providing practical help. Unless invited to stay and help, the health worker should leave the family to mourn the child according to their cultural tradition.
After the child has died, families should take the same precautions when handling the body and with funeral arrangements as they did when the child was alive. These precautions include covering open wounds and sores, especially when handling, laying out and cleaning the body, to avoid contact with infected body fluids.
Dealing with children's questions
Here are some ideas about answering children's questions which you could adapt.
Does AIDS hurt?
Most people with AIDS feel sick a lot of the time. Some people with AIDS feel okay. AIDS hurts during the times people with AIDS feel sick.
Does HIV infection hurt?
Some people with HIV feel fine. Some people with HIV feel sick. HIV hurts when people who have it feel sick.
Can doctors make people with AIDS better?
Sometimes doctors can help people with AIDS feel better, but no one knows how to get the germs out of the body once they have got it.
How long are people sick with AIDS?
People with AIDS will probably be sick their whole lives. AIDS doesn't go away the way a cold does.
Do people get AIDS from being bad? (Are people with AIDS being punished for doing bad things?) Do bad people get AIDS?
No. AIDS is caused by a germ. People get AIDS because the AIDS germ got into their body somehow. All kinds of people get AIDS. Getting AIDS doesn't have anything to do with whether someone is good or bad. Germs don't know whether a person is good or bad.
How do children get AIDS?
If a woman who has the AIDS germ gets pregnant and has a baby, the baby might get the AIDS germ from her. This is how most children with AIDS have got it. Some children who were very sick with other illness were given special treatments called 'blood transfusions'. This means a little blood from another person is given to a sick person who needs it. If the AIDS germ was in the blood used for transfusions, the children who received the blood got AIDS.
What happens to children with AIDS?
Children with AIDS are a lot like other children with other illnesses and are quite often sick, but they will also feel better sometimes too.
What happens when you die?
Depending on the age and level of understanding of the child, you could use the following responses:
What do you think happens? (Elicit response from child.)
When a person dies, the things that made him or her alive stop happening. He or she doesn't breathe any more, and blood stops flowing in his or her body. He or she doesn't talk or laugh or cry or move. His or her life is over.
Don't make up things for children that you don't believe yourself. Don't tell children that dying is 'like going to sleep, except you never wake up'. This may create anxieties about death and about going to sleep.
This is an example of the way one parent described death to her seven-year-old:
'I believe when someone dies, the person's soul - an invisible part of him or her that feels feelings and cares for people - goes to a special place. Some people call this heaven, all the things that hurt someone during life no longer hurt. I think it's a nice place to be.'
Considering the child
Make a child who is dying as comfortable as possible. This includes keeping them warm and dry, and providing pain relief if they seem to be in pain. Families should be encouraged to hug and touch the child and to involve them in family activities as much as possible - in very young children, non-verbal communication is very important.
Before the age of five it may be difficult to explain to a child that they are dying. But children often understand more than we think about what is going on. If a parent has died they may already be familiar with death. Children, like adults, may be sad, angry, afraid or anxious. Very young children may express anxiety through their behaviour, for example, suddenly being frightened of going to bed or being away from their mother.
It is important for children to have the opportunity to talk, to voice their feelings and fears. Just because they are silent does not mean they have no questions or are not worried.
If they ask questions, it is important to answer them simply and as honestly as possible. Adults may fear upsetting the child by telling the truth, but the child may be more scared and upset if he or she feels that secrets are being kept from him or her. If the child expresses fear about dying, focus on day to day plans and help him or her decide, if appropriate, who he or she wants to give special possessions to.
Planning for a child's future
Health and community workers can help parents who are sick or dying to plan for their children's future. What will happen to their children when they die is often parents' first concern. The decision about what happens to children may be taken by the father's family or the mother's family, depending on the culture.
Whoever takes the decision, planning ahead can relieve worry. Providing advice about legal, property and financial matters may be helpful. Where feasible, parents should make a legally binding will, to ensure that children inherit money or property, and that their wishes about who takes care of the children are made clear.
Practical issues to be considered include decisions about who will care for a child and guardianship, inheritance of land and property and decisions about schooling. Parents often want their children to stay together, and this is usually what the children themselves want too. As far as possible, depending on their age and family circumstances, children should be involved in decisions about their future and their wishes should be taken into account.