Module 1: HIV in Children

Transcription

1 Module 1: HIV in Children Module Objectives To review the current status of paediatric HIV infection in South Africa To review the various causes of HIV infection in children To introduce strategies for preventing Mother to Child Transmission of HIV To discuss the challenges associated with diagnosing children with HIV To describe the common course of HIV disease progression in children To introduce the needs of children infected with HIV Slide Presentation: HIV in Children HIV in Children Paediatric HIV Home Based Palliative Care Training Programme Funded by British Small Grant Scheme 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children infected with HIV. Ask the trainees for their experiences, challenges they face and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. HIV in Children Around the World in million children living with HIV/AIDS 640,000 children newly infected with HIV Half a million children died due to HIV/AIDS Of the 5 million infants infected with HIV since the beginning of the pandemic 90% were born in Africa 2. The figures are overwhelming. As the HIV pandemic continues, more and more children are being infected with HIV each year. (UNAIDS, 2004) Paediatric Palliative Care Manual for Home Bases Carers 9

2 HIV in Children in KZN and South Africa >90,000 babies born each year with HIV (DoH, 2003) 37.5% of women attending for antenatal care in KZN, are HIV positive (DoH, 2003) In some parts of KZN, this increases to more than 50% 60% of children admitted to paediatric wards in Durban are HIV positive 3. Current and future figures may be less than those stated in the slide due to the introduction of prevention of Mother to Child Transmission pmtct) programmes (to be discussed later). However, over the past few years it has been estimated that 90,000 babies were being born with HIV each year in South Africa (Department of Health, 2003). KwaZulu-Natal is located within the epicentre of HIV infection. How do Children get HIV? More than 90% of children with HIV acquired it from their mother, during Pregnancy Child Birth Breastfeeding (UNAIDS, 2002) TALC TALC 4. Ask trainees for their thoughts on how children are infected with HIV. In 2002, UNAIDS estimated that more than 1500 children become infected with HIV every day. The vast majority (more than 90%) acquire the infection from their mother. It may be acquired during pregnancy, labour, delivery or through breastfeeding (UNAIDS, 2002). When is HIV transmitted? Out of 100 children, how many children will be infected... during pregnancy? 5-10 during delivery? after birth? So when is HIV most likely to be transmitted? During pregnancy, delivery or breastfeeding? Ask trainees, out of 100 children born to HIV-positive mothers, how many will be infected during pregnancy? Single click provides the answer of 5-10 (i.e. 5-10%) and removes 5 children from the initial 100. Now ask how many children will be infected during delivery? Single click provides the answer of (i.e %) and removes another 10 children from the initial 100. Finally, ask trainees how many children will be infected during breastfeeding? Single click provides the answer of (i.e %) and removes another 10 children. This slide demonstrates that the greatest risk of transmission is during delivery and during breastfeeding. It also demonstrates that a large number of children born to HIV-infected mothers will not be infected. 10 Paediatric Palliative Care Manual for Home Base Carers

3 Increased Risk of MTCT When mother s viral load is high A women becomes infected with HIV during pregnancy or breastfeeding A pregnant woman has HIVrelated illness Interventions during delivery Artificial rupture of membranes Epi siotomy Blood transfusion TALC 6. Various factors increase the risk of Motherto-Child-Transmission (MTCT). Firstly, if the mother s viral load (amount of virus in the blood) is high there is a greater risk of transmitting the virus. This may occur when the mother is sick or newly infected. Secondly, interventions during delivery may increase the risk of the baby coming in to contact with maternal HIV-infected fluids. Examples are listed here. Increased Risk of MTCT Mixed Feeding Increases the risk of MTCT Breast Infections Thrush or brea st absce sse s provide a route for transmission of HIV during breast feeding Oral infections A child with thrush may have sore s or broken skin in the mouth, allowing transmission of HIV All Images TALC 7. Mixed Feeding (i.e. some breast feeding and some formula feeding) may increases the risk of transmission. This will be discussed further in Module 6: Nutrition. Breast infections increase the risk of HIV-infected fluids being passed through sores and cracks during breast feeding. Similarly, if the child has sores and cracks in the mouth, these serve as entry points for HIV in the breast milk and increase the risk of HIV transmission from mother to child. Preventing Mother to Child Transmission Prevention of Mother-to- Child-Transmission programmes have brought new hope BUT not everybody will be reached and as adult infection rates continue to increase, children will continue to be infected AND for an overwhelming number of children already infected, these programmes are too late 8. Fortunately, it has been found that a number of different interventions can significantly reduce the risk of Mother-To Child-Transmission of HIV. In Sub-Saharan Africa, this primarily involves the use of the ARV drug Nevirapine and the avoidance of breastfeeding (this difficult issue of breastfeeding will be discussed in Module 6: Nutrition in Children with HIV). Nevirapine is given to the mother before birth and reduces the amount of virus in the blood for a period of time. There is therefore less virus in the body to be transmitted to the child and the risk is reduced. Nevirapine is also given to the baby at birth. However, these programmes are only just beginning and a great deal of work is to be done before all mothers can benefit from them. So children will continue to be born with HIV. And for millions of children infected with HIV around the world, the programmes are too late. Paediatric Palliative Care Manual for Home Bases Carers 11

4 Other Ways Children are Infected with HIV Sharing of non-sterile instruments Sexual Abuse HIV-infected blood transfusion Injecting Drugs All Images TALC 9. Over 90% of children are infected from their mother. The remaining 10% are infected in similar ways to adults such as the use of non-sterile instruments and sexual abuse.this has not been helped by myths stating that HIV may be cured by having sex with a virgin. Children are being infected by contaminated blood where screening processes are limited or non-existent. Finally, although a small percentage of the children infected with HIV, IV drug use is a known cause. 10. So how does HIV work? Ask trainees if they are able to describe the way HIV affects a child. The process is the same as adults. This simplified diagram uses soldiers to represent the white blood cells of the immune system (or more specifically, CD4 cells). Normally, the body has lots of soldiers circulating in the blood stream. If a germ, such as a virus or bacteria enters the body (click), the soldiers fight that germ, to protect the body from harm (click). NB even with lots of soldiers, they may still need help with medicines like antibiotics. 11. When HIV enters the body (click), it damages the soldiers (CD4 cells) that normally fight it. The soldiers become fewer and fewer (click). Therefore, when germs enter the body (click), there are fewer soldiers to fight against them so the person becomes sick. Over time, HIV reproduces (click) and there is more and more virus in the body. At the same time, more and more soldiers are damaged (click) and more infections occur (click) as the body cannot fight them. These are known as opportunistic infections as they take opportunity of the weakened immune system. 12. Eventually, there is so much HIV in the blood (viral load) and very few soldiers (CD4 cells) so the body is susceptible to more and more severe infections opportunistic infections (click). Ask trainees if they can name some of the Opportunistic infections commonly associated with HIV infection in children. These will be discussed shortly. 12 Paediatric Palliative Care Manual for Home Base Carers

5 Course of HIV Infection in Children HIV Infection Seroconversion Sometimes a flu-like illness TALC Latent Infection Asymptomatic HIV-Related Illness Related directly to HIV infection Related to immune deficiency AIDS 13. So the overall effect of the HIV virus on a child is similar to that of an adult. Following infection with the HIV virus, seroconversion takes place. This may be accompanied by a flu-like illness but may not be recognised as anything severe. A period of latency then follows, in which the child is infected with HIV but is asymptomatic. The virus is slowly replicating and damaging the immune system but there are no symptoms. Like adults, this asymptomatic stage will come to an end when the child starts developing a) illnesses resulting from the direct damage of HIV and/or b) opportunistic infections which he/she cannot fight off due to a weakened immune system. As the child s condition deteriorates, he/she will progress to AIDS. Children differ to adults in that they progress from seroconversion to HIV-related illness much more quickly. In other words, the asymptomatic period is usually much shorter in children. One reason for this is that their immune systems are immature and still developing. Prognosis for Children with HIV These children were all born with HIV In South Africa, how many of these children will reach their 1 st birthday? 4 th Birthday? 5 th Birthday? 14. To demonstrate the prognosis for children born with HIV in South Africa, ask trainees how many of the children in the slide do they think will reach their first birthday. Single click will remove half the children, showing only 50% of children born with HIV in South Africa will reach their 2nd birthday (or 50% will die before their first birthday). Another single click will remove another 10% of the original number, showing another 10% of children will not reach their fourth birthday. 40% of children will remain on the slide, showing only 40% of children born with HIV in South Africa reach their fifth birthday. Common Symptoms of HIV Weight loss Chronic diarrhoea Failure to Thrive Oral Thrush (often recurrent after treatment) Fever Increased frequency of common childhood illnesses, eg ear infections, pneumonia) All Images TALC 15. Ask trainees if they are able to name any signs and symptoms of HIV in children. The most common are as listed in the slide. The pictures are examples of children with (from top right, clockwise) dehydration from diarrhoea; severe oral thrush; a growth chart showing failure to thrive; malnutrition and acute respiratory infection. Many of the recurrent infections are common to all children but the infections and their symptoms are usually more frequent, more severe and more difficult to treat in children with HIV. Chronic gastroenteritis and TB are also common. Paediatric Palliative Care Manual for Home Bases Carers 13

6 Common Symptoms of HIV All Images TALC 16. This slide uses pictures to demonstrate the wide variety of symptoms commonly seen in children with HIV. These and many more will be discussed throughout this training programme. Ask trainees if they are familiar with any of the conditions in the slide. From top left to right: 1) abscesses (on the head) 2) thrush (on the neck) 3) dermatitis (on the back) 4) dermatitis (on the face) 5) fungal infections (ringworm on the hand), 6) neurological problems (loss of muscle control in the face), parotitis (swollen parotid glands). Bottom left to right: enlarged liver and spleen, recurrent respiratory infections, meningitis (post- meningitis) and shingles. Where a child presents with either one or a combination of these symptoms, this may be strongly suggestive of HIV infection. Some AIDS-defining Illnesses in Children Candidiasis of bronchi, trachea or lungs Oesophageal Candidiasis PCP Pneumonia Recurrent Pneumonia HIV Encephalopathy Kaposi s sarcoma Toxoplasmosis of the brain Wasting Syndrome Herpes simplex, longer than 1 month Lymphoma 17. The 2 previous slides addressed common symptoms of HIV infection. These indicate that the child may well be infected with HIV. HIV infection is causing symptoms directly related to HIV or as a result of damage to the child s immune system. As the child becomes progressively weaker, he is susceptible to more severe opportunistic infections and he is said to have AIDS, Acquired Immune Deficiency Syndrome. The slide lists some AIDS-defining conditions for children (i.e. HIVpositive children with these conditions are said to have AIDS). Some are AIDS-defining for adults too. Symptoms of HIV/AIDS Symptoms seen in common childhood illnesses last longer and are more difficult to treat Children do not respond so well to treatment More likely to suffer life-threatening complications Children with HIV die from common childhood illnesses 18. In summary, children with HIV are more susceptible to infections. They get common childhood illnesses more often than other children and these are usually more severe, more persistent and more difficult to treat. Children usually develop symptomatic HIV and progress to AIDS much more quickly than adults and their prognosis is very poor. They are more likely to suffer life-threatening complications of infections. It is often common childhood illnesses which cause death in children with HIV. 14 Paediatric Palliative Care Manual for Home Base Carers

7 Does Grace have HIV/AIDS? Grace is 6 months old She is well and healthy. TALC Possibilities include: HIV, TB, malnutrition, measles Two months later, Grace is wasted, has a chronic cough and skin rash. TALC 19. Having discussed some of the more common symptoms of HIV, the following slides will use the case study of Grace to explore the diagnosis of HIV infection in children. The picture on the left shows Grace at 6 months of age. She is well and healthy. The picture on the right shows Grace at 8 months, two months later. She is a different child. Her mother has brought her to clinic as she has been coughing for the last month and has a skin rash. She is also wasted. Her mother does not know her own HIV status. Ask trainees if there is any possibility that Grace may have HIV and to justify their answer. HIV is possible. Grace now has a combination of symptoms commonly associated with HIV. However, HIV is not the only possibility as TB, malnutrition or measles may also cause Grace s symptoms. So how could they determine whether Grace has HIV? Testing for HIV: Antibody Test (ELISA) When the HIV virus is in the blood, the body makes antibodies against it The Antibody Test (ELISA) looks for these antibodies If they are present in a sample of blood, we know HIV must be in the blood A child 18 months or older may be tested using this ELISA test TALC TALC Testing for HIV: Antibody Test (ELISA) Problem!! A mother with HIV will have antibodies in her blood During pregnancy, she will pass these to her baby These antibodies will stay in the baby s blood for up to 15 months A positive antibody test in an infant younger than 15 months may have detected the mother s antibodies This test is unreliable for diagnosing children less than 15 months A positive test tells us the mother has HIV 20. Ask trainees if they are familiar with the ELISA test and what they understand by it. When an individual is infected with HIV, their body will make antibodies to the HIV. Antibodies to HIV in the blood therefore confirm that HIV is in the blood. The ELISA test looks for these antibodies. A blood sample is taken and tested using the ELISA test. If the ELISA test is positive, antibodies to HIV have been found in the blood. The individual has HIV infection or is HIV positive. This test may be used for adults and children older than 18 months. 21. Ask trainees if they know why the ELISA test may not be used to diagnose HIV in children less than 15 months. A mother infected with HIV will have made antibodies to HIV. During pregnancy, her antibodies to HIV will pass to the unborn child. When the child is born, the maternal antibodies to HIV will remain in the child s blood for up to 15 months. If the ELISA test is used on the child, the test will find antibodies to HIV but these may be the mothers. There is no way of telling whether these are the mother s antibodies or antibodies that the child has made due to being infected with HIV. After 15 months of age, the maternal antibodies will have cleared and any remaining will be the child s own. The ELISA test cannot therefore be used to test for HIV in a child less than 15 months. What we do know is that a positive ELISA test in a child less than 15 months confirms that the mother is HIV positive. Paediatric Palliative Care Manual for Home Bases Carers 15

8 Other Tests for HIV How do we confirm and test for the virus? DNA PCR tests Viral culture P24 antigen How do we know how much virus is in the blood? Viral Load Test Unfortunately these tests are: Complicated Expensive 22. So Grace is too young for the ELISA test to CONFIRM she has HIV. There are other tests which look for the actual HIV virus itself (DNA PCR test; viral culture and P24 antigen). The actual amount of HIV virus in the blood can be detected using the Viral Load test. However, these tests are extremely expensive and complicated. They require complex laboratory equipment and highly specialised personnel. Whilst this may change over time as new technology becomes available, in many places around the world, health professionals would make a provisional diagnosis based on Grace s clinical symptoms or wait until 15 months of age when she may be tested using the ELISA test. DNA testing is now available in South Africa as part of the ART roll-out. Testing a Child for HIV Parents or Carers of the child MUST receive counselling and sign consent before the child is tested for HIV How do we know how strong the immune system is? It is possible to count how many soldiers (CD4 cells) there are in a sample of blood from the child This is a CD4 count and tells us how strong the immune system is Lots of soldiers (high CD4 count) tells us the immune system is still fairly strong and may be able to fight infections Few soldiers (low CD4 count) tells us HIV has destroyed lots of them and the immune system is weak As the actual CD4 count varies with age the CD4% is used in children. 23. HIV testing in children has enormous ethical implications. A child has just the same rights as an adult but these are at risk of being violated as the child is too young to understand or express these rights. A child must only be tested for HIV where the individual with legal responsibility for the child is present to act in the best interests of the child. This parent or carer must have received pre-test counselling in order to fully understand the test and its implications. A consent form must be signed by the parent/carer prior to the test. 24. In addition to the tests which confirm HIV is in the blood (ELISA, DNA PCR, P24 antigen, Viral culture) and how much HIV is in the blood (Viral load), it is also possible to measure the effect of HIV on the immune system. Drawing on earlier slides, ask trainees to summarise how HIV affects the body. A CD4 test actually counts the number of strong, healthy CD4 cells (soldiers) in a small sample of blood. This provides an indication of the damage that HIV is causing to the immune system and is extremely useful in assessing the risk of developing infections and the child s prognosis. In children as the CD4 count varies with age the CD4% is used. 16 Paediatric Palliative Care Manual for Home Base Carers

9 Remember, at 6 months of age, Grace was well and healthy Grace Two months later, she is wasted, has a chronic cough and skin rash Grace s blood te st shows she is Elisa positive What do you tell the mother? What is Grace s prognosis? TALC 25. So how should Grace be managed? She was well two months ago but now has symptoms commonly associated with HIV. Her mother was counselled and she consented to an ELISA test for Grace. The test was positive. What should Grace s mother be told? What is Grace s prognosis? This is discussed in the following slides. Grace Issues: A positive ELISA shows that Grace has been exposed to HIV The Elisa must be repeated at 15 months to be sure However her symptoms strongly suggest that she is infected The ELISA test shows that her mother IS HIV positive Her mother may or may not know that she is infected 26. The positive ELISA test confirms that Grace has been exposed to HIV that is, she has antibodies to HIV in her blood but there is no way of knowing whether these came from her mother during pregnancy, delivery or through breastfeeding or whether they are antibodies which Grace has made herself in response to the HIV virus in her body. The positive result confirms Grace s mother has HIV. When her mother consented to the test for Grace she will have been counselled that a positive result would confirm HIV infection in the mother. But the mother may not be expecting this result. Grace s symptoms and her mother s diagnosis strongly suggest that Grace has HIV although this has not been confirmed using laboratory testing. Grace Sensitively assess: Does her mother have any idea what may be wrong with Grace? What understanding of the ELISA test does she have? Has she had an HIV test herself? Was she offered pmtct intervention? 27. These are all issues which should have been explored in counselling for the mother prior to Grace s test. However, this situation must be handled extremely sensitively. These are some of the questions which the mother should be asked in order to assess any existing concerns that she may have regarding HIV herself or that she may have passed it on to Grace. If she understands the ELISA test fully, she should be aware that a positive result would suggest she has HIV herself. She may already have had an HIV test and not mentioned this previously. If the mother received pmtct care, this will provide useful information regarding any interventions that the mother received which may have prevented transmission. Paediatric Palliative Care Manual for Home Bases Carers 17

10 Grace Sensitively Counsel the Mother: The ELISA test shows that Grace has been exposed to HIV This means the mother must have HIV herself Although Grace may not be infected, her illnesses suggest that she is The test will need to be repeated at 15 months to be sure Between now and then, Grace needs: - To start Bactrim prophylaxis - Good nutrition - Vitamins - Monthly checks 28. The mother requires careful counselling by those trained in issues relating to both Grace and her mother. The mother should understand that whilst Grace s diagnosis cannot be confirmed using the ELISA test, it does confirm that she herself has HIV. Grace s symptoms and her mother s diagnosis strongly suggest that Grace has HIV. However, this can only be confirmed at 15 months of age if breastfeeding has stopped unless other laboratory tests become available. In the meantime, Grace needs all the help she can get to become healthy and strong again. The importance of prophylaxis, good nutrition, vitamins and monthly checks at clinic should be explained. These will all be discussed throughout the training programme. Summary HIV damages a child s immune system so that he cannot fight infections 29. Ask trainees to summarise what they have learnt during this module and how they may apply it to practice with children in their care. Time from infection to the development of AIDS, and finally to death, is generally much shorter in children than in adults Normal childhood illnesses are more frequent and more severe A larger proportion of children will develop serious illness and death within the first year or two of life Testing children for HIV before 15 months of age requires a DNA test. 18 Paediatric Palliative Care Manual for Home Base Carers

11 Module 2: Role of the Home Based Carer Module Objectives To demonstrate that children with HIV have a variety of physical, psychological and social needs To define palliative care for children with HIV To demonstrate the importance of the role of the Home Based Care Giver in providing palliative care for children with HIV Slide Presentation: Role of the Home Based Carer Role of the Home Based Carer Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria, 1. Welcome trainees and introduce yourself. Give a brief background in to your area of practice, role and experience of caring for children infected with HIV. Ask the trainees for their experiences, challenges they face and what they hope to learn from this session. Encourage trainees to ask questions and share their thoughts throughout. Small Grant Scheme Not just little adults ALL children have very special needs As a child grows, they have to learn, adapt and cope with the world around them They have physical, emotional and social needs that are very different to adults In the world of a child with HIV, there are a great number of challenges they must face 2. Anyone involved with the care of children, whether infected with HIV or not, needs the fundamental understanding that children are not just little adults or little people. Children have very specific needs and these are changing all the time as the child grows and develops. They must learn to adapt, cope and respond to the world around them. A child is on a journey of rapid physical, psychological and social change. Their needs are very different to adults and appropriate care for children recognises and understands these needs. Children with HIV face even greater challenges. These will be introduced in this module but explored in greater depth throughout this training programme. Paediatric Palliative Care Manual for Home Bases Carers 19

12 faces a progre ssively terminal disease experiences painful, distressing sicknesse s is dependant on others for care, love & support Physical Needs TALC TALC 3. Firstly, a child with HIV has overwhelming physical needs. HIV infection is a terminal illness. As yet, there is no cure and the child faces inevitable death at some stage. The child becomes progressively weaker as the immune system and other parts of the body are damaged. The child is more susceptible to opportunistic infections. The symptoms of these infections and conditions are commonly painful and debilitating and dramatically affect the child s quality of life remaining. Children are entirely dependent on their parents or carers and need immense love and support to help them cope with the physical impact of HIV. The physical needs of children will be explored further in later modules. Emotional Needs caring for a sick relative grieving the loss of parents or siblings unable to understand why he is ill unable to engage in normal child activities when sick Numerous stressful investigations and procedures 4. Secondly, children with HIV have significant psychological or emotional needs. Whilst these may be more difficult to identify than the more obvious physical needs, they are just as important. Children with HIV face tremendous emotional challenges as a result of both their own and their relative s(s ) diagnoses. When a child should be playing and enjoying childhood, he/she faces recurrent illnesses, the need to care for sick relatives, the loss of relatives and recurrent traumatic medical procedures. These emotional needs will be discussed further in later modules. Social Needs May not be cared for properly as parent is sick May be cared for by elderly grannies May be cared for by siblings Loss of household income Living in poverty Inadequate nutrition, sanitation Poor access to health services Future care for the Child? May be stigmatised by diagnosis TALC 5. Thirdly, just a few examples of the complex social needs of children with HIV are listed here in the slide. These are usually extremely challenging and directly influence the physical and emotional needs of the child. Multidisciplinary team involvement is essential in order that these needs be met. These will be discussed further in later modules. 20 Paediatric Palliative Care Manual for Home Base Carers

13 What is Palliative Care? To palliate is to alleviate or ease Whilst it IS NOT about curing disease, it IS about Alleviating symptoms by treating and controlling disease Improving quality of life 6. Ask trainees to define Palliative Care. What does it mean to them and how does it relate to children with HIV? To palliate is to alleviate or ease. Palliative care aims to alleviate symptoms, improve quality of life and relieve the burden of illness on the patient and family. Relieving the burden of illness on patients & family What is Palliative Care? Palliative care has traditionally been seen as end of life care and hospice However, it is much more than this! HIV places considerable physical, emotional, social & spiritual strain on children and their families throughout the course of infection 7. Palliative care is commonly thought of as end of life care. Indeed, the principles of palliative care are vital for patients in the end stages of life where care does not focus on prolonging life but on alleviating symptoms, improving the quality of life remaining and relieving the burden of illness on the patient and family. However, the burden of HIV is not only at the end of life but throughout the course of infection. Like adults, children face considerable physical, emotional, social and spiritual strain from diagnosis through to the end of life. Not Just End of Life Care Whilst children with HIV will inevitably need end of life care at some stage, Palliative care begins when illness is diagnosed and is appropriate throughout the child s illness AND at the end of life 8. The principles of palliative care can provide immense benefit to children with HIV throughout the course of HIV disease. Symptom control is required throughout the child s illness as they experience recurrent infections and painful, debilitating conditions. Suffering may be alleviated and quality of life may then be improved. Similarly, the psychological and social impact of HIV begins with diagnosis and continues through to the end of life and beyond, when bereavement support is required. A Continuum Palliative care is a continuum, which children and families can enter at any point. The continuum ranges from: Counselling before and after voluntary HIV testing Supporting people with HIV/AIDS who are not sick and their families Providing home care for people who are ill Bereavement follow-up and support for families after a person with AIDS has died (Lauden, 1999) 9. Palliative Care is therefore a continuum. It is not end of life care but a continuum of care in to which the child and their family may enter at any point. Activities involved in this continuum focus on counselling and support from the very beginning at diagnosis; providing support for those living with HIV but who are not sick; home care for those who are ill; and bereavement follow up for families after the death of a family member - an essential part of the continuum. Paediatric Palliative Care Manual for Home Bases Carers 21

14 Palliative Care is the active, total care of patients at a time when their disease is not responsive to curative treatment. Control of pain or other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of best possible quality of life for patients, their families or other key people important to them. Many aspects of palliative care are also applicable earlier in the course of the illness (World Health Organisation, 1998) 10. The World Health Organisation definition of Palliative Care is stated in the slide. The text highlighted in blue confirms the points already made and reemphasises the role of palliative care throughout the course of an illness in contrast to being solely end of life care. All of these principles apply to the needs of adults and children infected with HIV. Palliative Care for Children aims to: achieve the best quality of life for children and their families/care givers across the continuum of care, from diagnosis to end of life care and bereavement support keep the child well and symptom-free for as long as possible, in order that he may live as fully and as comfortably as possible ensure holistic, compassionate care, addressing physical, psychological, social & spiritual needs of each individual child 11. Palliative care for children follows the same principles, including the importance of the child s family. Having defined what is meant by palliative care and the role of palliative care for children with HIV, the following slides will now address individual components of care that children with HIV require. So What Can you Do? Children with HIV need you to help them and their carers by: Addressing their physical, emotional, social and spiritual needs Keeping them healthy for as long as possible Monitoring them regularly Recognising, referring and helping to treat infections Recognising and helping to manage symptoms Supporting their carers Liaising with the Professional Nurse and multidisciplinary team 12. This training programme has been written in line with the scope of practice of Home Based Carers, as defined by South Coast Hospice. This slide demonstrates that Home Based Carers have a broad range of roles in palliative care for children with HIV, all within their scope of practice. The Home Based Carer is commonly the most regular, or even only, contact that the child and family may have with health and support services. The Home Based Carer is in a unique position to be able to address the needs of children through monitoring and assessment of the child and family. They will be supported by others within the Home Based Care team to whom they will then refer concerns (e.g. supervisor or professional nurse). Different aspects of care as listed here will now be discussed in more detail. 22 Paediatric Palliative Care Manual for Home Base Carers

15 Promote Good Nutrition Plays a central role in keeping children with HIV well for as long as possible Essential for maintaining a strong immune system and helping children fight off infections Children with HIV have greater nutritional requirements than uninfected children 13. A major component of care is the focus on keeping the child well for as long as possible. A child with HIV is more likely to get infections which greatly affect quality of life. The first of various strategies for keeping the child healthy for as long as possible is to promote good nutrition. The importance of good nutrition for a child with HIV cannot be stressed enough. Nutrition will be discussed further in Module 6: Nutrition. Promote Good Nutrition Children with HIV need you to educate their care givers about: the importance of good nutrition in promoting health the nutritional values of local, available foods preparation of local foods that maximises nutritional value hygiene measures required in food preparation and to recognise and refer children with malnutrition 14. Malnourished children are more likely to get infections. Children with HIV are already susceptible to infections. Home Based Carers have a vital role to play in educating families about good nutrition and its role in keeping the child well for as long as possible. This is not only important for the child with HIV but for his/her family. The child s weight should be recorded on the Road to Health Chart Check the child has been weighed Monitor Growth Identify any cause s for concern as early as possible Refer any concerns TALC 15. Ask trainees if they are familiar with this chart. Every child should have a Road To Health Chart. This documents the child s weight and head circumference at different ages and the dates of immunisations. Every time the child is weighed, this should be recorded on the chart. On the left of the chart is the weight. On the bottom of the chart is the age. The first point (far left) is the child s weight at birth. The two solid black lines are called percentiles and represent the average weights for children at different ages. The child s weight should follow the curve in the same pattern. The child will then be gaining weight as expected for his age. The chart will be discussed in more detail in Module 6: Nutrition. It is also important to measure and plot height and head circumference to assess growth properly. These charts are extremely useful tools for detecting whether children are growing well. They can be used to identify children with growth failure or malnutrition before it gets severe. However, they are only useful if the child is being weighed regularly. Home Based Carers can teach parents/carers about the importance of regular weight checks and check regularly that the chart is being completed. If they are not, growth failure or malnutrition may be missed. Paediatric Palliative Care Manual for Home Bases Carers 23

16 Vitamin A Supplements All children should be given vitamin A supplements to prevent severe illness First dose: Not breastfed - at 6 weeks Breastfed any time after 6 months of age Thereafter: should be given every 6 months to ALL children Severe Malnutrition or Persistent Diarrhoea: AN extra dose should be given for treatment UNLESS a dose has been given in past month 16. Vitamin A is essential for an effective immune response. Vitamin A deficiency makes children susceptible to infections and also to night blindness. Children with severe malnutrition are usually Vitamin A deficient. Diarrhoea prevents Vitamin A being absorbed. Children with HIV are commonly malnourished and get recurrent episodes of diarrhoea. They are at high risk of Vitamin A deficiency yet they have a critical need for Vitamin A due to their need for a good immune response. Home Based Carers can provide parents/carers with information about the importance of Vitamin A supplements and where they are available locally. Immunizations Children with HIV get more infections than other children Some can be prevented using normal immunizations ALL children with HIV must be immunised according to the national programme Home Based Carers are able to educate care givers about the importance of Immunizations! 17. Immunizations save the lives of millions of children very year. Many of the common childhood illnesses causing death in babies and young children are now preventable. ALL children should be immunised according to the national protocol. The reverse side of the Road To Health Chart lists the immunisations which the child should receive and these are signed once given. Children with HIV are even more susceptible to these childhood illnesses and they MUST receive the immunisations. Home Based Carers can check that the immunisations have been given by looking at the chart. If they have not, they may counsel the parent/carer about the importance of immunisations and refer the child to the local clinic. Prophylaxis Prophylaxis is the use of drugs to prevent certain infections Severe Opportunistic Infections like PCP Pneumonia, Toxoplasmosis Acute severe bacterial infections may be prevented using Co-Trimoxazole (Bactrim) prophylaxis 18. Ask trainees to explain what is meant by prophylaxis. There are some severe opportunistic infections which are known to affect children with HIV but which can be prevented using specific drugs. These have transformed the prognosis for children with HIV who now have significantly reduced risk of developing these debilitating, distressing and life-threatening conditions. Cotrimoxazole (Bactrim or Trimethoprim- Sulfmethoxazole) has been found to be very effective at preventing PCP Pneumonia, Toxoplasmosis and severe bacterial infections. 24 Paediatric Palliative Care Manual for Home Base Carers

17 Children with HIV need you to: Prophylaxis reinforce the importance of prophylaxis ensure they have enough medication for child assess whether they are giving the medication and giving it correctly refer any concerns monitor for allergy to Bactrim 19. Although it is not within the scope of practice of most Home Based Carer Givers to administer medication, they have an important role to play in ensuring that the child is actually receiving Bactrim. If the child is not, he is at great danger of developing these severe opportunistic infections. Any concerns should be referred. It should be noted that whilst allergy to Bactrim is not common, it is possible. Any child receiving Bactrim who develops a skin rash or ulcers should be referred immediately to the prescriber. It is important that Home Based Carers are aware of this possibility as they may be the first to observe it. This will be discussed further in Module 10: Skin Problems. Bactrim Regimen Children with HIV should take Bactrim daily, 5 days a week They should be continued until 15 months old when a decision is made: If HIV uninfected, Bactrim is stopped If HIV-infected but asymptomatic, Bactrim is stopped If symptomatic HIV, Bactrim is continued for life If CD4% > 20% for 6 months, bactrim can be stopped 20. The Bactrim regimen will be written clearly on the set of instructions for the child. It is usually prescribed daily, 5 days a week (i.e. Monday to Friday). Latest research has shown that Bactrim should be continued until 15 months of age when the prescriber will then make a decision as to whether it should be continued or not. If the child is HIV negative, there is no need for the child to take it any longer. If the child is HIVpositive, Bactrim will only be continued if the child is symptomatic. If the child is on ARV therapy then the bactrim can be stopped once CD4% above 20% for 6 months. Regular Monitoring Children with HIV need you to monitor them regularly in order to: Assess and promote good nutrition Identify delays in growth and development Educate carers about the importance of clinic checks Provide support to the child and carer Identify and address emotional needs Identify and address social needs Identify infections as early as possible Refer any concerns to the Professional Nurse 21. As stated earlier, Home Based Care Givers may be the main or only contact that the child and family have with health and support services. The child needs regular monitoring in order to ensure that any problems are identified as early as possible and managed appropriately. This is important for ensuring that the child remains well and symptom-free for as long as possible and that any symptoms are controlled effectively. Home Based Care Givers are central to the identification of issues and referral for management. Paediatric Palliative Care Manual for Home Bases Carers 25

18 Recognising & Treating Infections Infections in children with HIV are usually more severe more difficult to treat than uninfected children Children get very sick much more quickly than adults Early recognition & treatment of any infection is essential! 22. As discussed in Module 1: HIV in Children, children with HIV experience more severe, more persistent forms of infection than uninfected children. These are often extremely difficult to treat and symptoms may be particularly painful and distressing. In addition, children get sick much more quickly than adults and complications can be life-threatening (e.g. a child with diarrhoea may die from dehydration within a few hours or days). Early recognition and referral is essential if the child is to be treated effectively and symptoms are to be managed. The Home Based Care Giver may be the first or only point of contact where such infections may be identified. Recognising & Treating Infections Children with HIV need you to: Listen when the carer is worried Educate care givers about signs and symptoms Encourage care givers to call for help Assess an emergency and take appropriate action Identify infections as early as possible Refer promptly where appropriate Assist with management of common signs & symptoms ensure regular follow up 23. The role of the Home Based Care Giver in recognising and treating infections is listed here. Above all, it should be stressed just how important it is to listen to the carer. They know the child better than anyone and provide invaluable information regarding the child s condition. Home Based Care Givers have an important role in education, support, assessment, referral, management and follow up of the child with infection. Signs and symptoms of common infections will be discussed in other modules within this training programme. Symptom Management Children with HIV experience a wide range of distressing, debilitating symptoms throughout the course of their illness, impacting greatly on quality of life Children with HIV need you to: Anticipate painful, distressing symptoms Recognise symptoms as early as possible Refer problems promptly for appropriate management Ensure symptoms are being managed appropriately Support and assist their care giver Follow up to ensure management has been effective 24. Similarly, the Home Based Care Giver has an extremely important role to play in ensuring that the child s symptoms are controlled effectively. Through an awareness of the variety of symptoms the child may experience, being able to recognise these and refer as soon as possible for appropriate management, they may have a direct effect on improving the child s quality of life. Importantly, Home Based Care Givers are in a position to follow up the child and ensure symptom control has been effective then refer again if necessary. Symptom control will be discussed later in this training programme. 26 Paediatric Palliative Care Manual for Home Base Carers

19 Working With Carers The child s carer knows the child better than anyone Ask them if they have any concerns about the child! Hear their concerns! Carers needs lots and lots of support and encouragement Teach the carers: How to help keep the child healthy for as long as possible To recognise and refer problems To give the medicines the child needs 25. The child s parent/carer must be central to any care for the child. They know the child better than anyone and can provide invaluable information about the child s condition. If they have concerns, these must be heard and respected. Parents/carers of a child with HIV are not only faced with the burden of HIV on the children but have significant, complex needs themselves. Work with the carer to support and help them. Not just physical support! Children with HIV need much more than just physical care They also have immense emotional, social and spiritual needs And so do their families! Addressing these is essential if quality of life is to be improved for the child and Family Liaise with social and community services 26. The psychosocial needs of children with HIV have already been introduced earlier in this module. Home Based Care Givers do not only have a vital role in meeting the physical needs of children with HIV but also the emotional, social and spiritual needs of the child. Importantly, it is not only the child who needs this but their families too. The families face overwhelming challenges in their lives. Home Based Care Givers can help to alleviate the burden of some of these challenges. These issues will be discussed later in the training programme. The Arrival of ARVs! Children with HIV can now expect: Reduced number of Infections Improved quality of life and Longer life BUT they still have considerable needs as: ARVs will not cure children with HIV Children on ARVs need immense support and monitoring 27. ARV drugs will have profound implications for palliative care in South Africa as they have transformed AIDS from a progressively fatal disease to a chronic illness in many countries. However, whilst alleviating HIV-associated symptoms, ARV drugs have significant challenges of their own, impacting on quality of life. They are not a cure. These drugs will therefore by no means make palliative care obsolete for these patients. In many ways, the principles of palliative care become even more important. The Arrival of ARVs! Children taking ARVs need you even more than before: To help them take the ARVs so they can get full benefit from the drugs for as long as possible To help them understand why they need to take the medicines To monitor the effect of the drugs To identify side effects To refer any problems 28. Palliative care will be as vital as ever if quality of life for children on these drugs is to be promoted for as long as possible. Home Based Care Givers have extensive experience within the communities they serve, having established, trusting and supportive relationships with children and families. They have an essential role to play in the future care and support of children taking ARVs. This will be discussed in greater detail in Module 16: ARVs. Paediatric Palliative Care Manual for Home Bases Carers 27

20 End Of Life Care A team of professionals may decide that continuing with further treatment will cause undue distress to a child The decision to provide the child and carer with End of Life or Terminal Care is thought about extremely carefully Every child will be different, depending on their condition 28. Palliative care is a continuum from diagnosis to end of life and beyond to bereavement support. Yet when does end of life care begin? This is an ethical dilemma and is full of moral and emotional challenges. Every child with HIV will eventually require terminal or end of life care where care is focussed on symptom control prior to death. The circumstances of every child and their family will be different and any decisions regarding where and how the child will be cared for will be made by a team of designated professionals, led by the wishes of the family and with the best interests of the child in mind at all times. End of Life Care The expertise and support of Home Based Carers make it possible for Children to die as comfortably as possibly in their own home and Care givers to be supported during the final stages of the child s life This should be encouraged, as long as the parents or carers are able to cope 30. In the same way that Home Based Care Givers have transformed end of life care for adults with HIV and other terminal illnesses, the importance of the role of Home Based Care Givers in end of life care for children cannot be emphasised enough. The expertise and support of Home Based Care teams means that children may die comfortably in their own home, with their family around them. This should be encouraged wherever families are able to cope and full support and symptom control is available through a Home Based Care Team. Bereavement Support Your role does not end when a child dies Any death is traumatic but none more so than the death of a child within a family We must be sympathetic, understanding of their loss and support them through their grieving process 31. The final stage of the continuum of care is bereavement support for the child s family. Bereavement support in the event of a child s death is particularly challenging as families struggle to come to terms with the death of one so young. Grief may be associated with intense feelings of guilt and anger. Parents/carers will all be different whilst some may benefit from fairly minimal support, others may require much more intensive, prolonged support as they come to terms with the death of the child. In contrast to the death of a child with other terminal illnesses such as cancer, the death of a child with HIV rarely stops there - others within the family may have already died or face death themselves. Home Based Care Givers may well have established a strong, trusting relationship with the family and can offer great support. The need for support for Home Based Care Givers themselves must never be underestimated either and provision for this must be made within the Home Based Care Team. 28 Paediatric Palliative Care Manual for Home Base Carers