Patient Support For Hiv Infected Children

Patient Support for HIV infected children
MSF-OCB September 2008

L007COUG02E
Kathleen Bosteels and David Goetghebuer
PATIENT SUPPORT FOR HIV INFECTED CHILDREN
MSF-OCB, September 2008 This guideline was written by Kathleen Bosteels and David Goetghebuer.
Thanks to: Joelle Van Winghem, Isabelle Zuniga, Line Arnould, Freya Rasschaert, Doris Mesia, Alexandra Peltier, Jerome Oberreit, Dimitri Vanderlinden. Special thanks to: Abbie Jung, Genevive Loots, Barbara Laumont
This guideline should always be accompanied by the DVD-rom Patient support for HIV infected children : Tools, Activities and References This guideline is meant for use by the projects of Mdecins Sans Frontires. Non MSF persons are welcome to read and take inspiration from its content.
Please send your comments, and any materials related to Patient Support for children to: - Genevive Loots : Genevieve.Loots@msf.be - David Goetghebuer : David.Goetghebuer@msf.be
EXECUTIVE SUMMARY .................................................................................................................2 1. Introduction..................................................................................................................................2 2. Child Development ......................................................................................................................2 3. Basic concepts for paediatric care and support............................................................................2 4. Organisation of patient support for children ................................................................................3 5. Implementation of a children specific approach ..........................................................................4 1) INTRODUCTION ...........................................................................................................................5 1.1 History........................................................................................................................................5 1.2 Objectives ..................................................................................................................................5 1.3 Patient support............................................................................................................................6 1.4 A child-patient typical history....................................................................................................8 2) CHILD DEVELOPMENT.............................................................................................................10 2.1 Why you need to know the basics of child's development?.....................................................10 2.2 Cognitive development and evolution of a childs understanding of health............................10 2.3 Psychosocial development of a child .......................................................................................12 2.4 Particularity of adolescence .....................................................................................................13 2.5 Evolution in the children's way of playing and interacting......................................................15 3) BASIC CONCEPTS for PEDIATRIC CARE AND SUPPORT...................................................17 3.1 Introduction..............................................................................................................................17 3.2 Age categories..........................................................................................................................18 3.3 The child, the care-taker, and the family .................................................................................19 3.4 Child-friendly environment......................................................................................................22 3.5 Child-friendly staff...................................................................................................................24 3.6 Child-adapted medical care......................................................................................................25 3.7 Children consultation day at the clinic.....................................................................................26 3.8 Multidisciplinary approach ......................................................................................................27 4) ORGANISATION OF PATIENT SUPPORT FOR CHILDREN.................................................30 4.1 Basics principles of HIV counselling for children...................................................................30 4.2 HIV Counselling and Testing of children ................................................................................36 4.3 Disclosure.................................................................................................................................41 4.4 Initiation to ART......................................................................................................................46 4.5 Adherence and follow-up counselling .....................................................................................49 4.6 Social support and community link .........................................................................................52 4.7 Support tools and activities ......................................................................................................55 5) IMPLEMENTATION OF A CHILDREN SPECIFIC APPROACH............................................70 5.1 The minimal package ...............................................................................................................70 5.2 Who is in charge of coordinating the Children Support ?........................................................71 5.3 Planning of implementation .....................................................................................................73 5.4 Specific recommendations per age class..................................................................................74 6) ANNEXES.....................................................................................................................................81 Annex 1 : DVD-Rom Patient support for HIV infected children : Tools, Activities and References ....................................................................................................................................81 Annex 2 : Cognitive development and evolution of a child towards understanding of health ......81 Annex 3 : The psychosocial development of the child ..................................................................81 Annex 4 : Counselling HIV+ children and their care-takers .........................................................81 Annex 5 : Disclosure of HIV diagnosis to children .......................................................................81 Annex 6 : Children's adherence to treatment .................................................................................81 Annex 7 : Training on "Support to children living with HIV/Aids"..............................................81 Annex 8 : International organisations active on HIV/Aids and children.......................................81 Lexicon...........................................................................................................................................82 Bibliography...................................................................................................................................83
EXECUTIVE SUMMARY
1. Introduction
This guideline is written to assist HIV/Aids projects in implementing or improving a specific approach of Patient Support for children. It gathers the experiences, lessons learned and best practices, from MSF and other organisations. The Patient Support component covers all the activities aiming at supporting the patient in front of his disease and his treatment, beyond the purely medical aspects of care. It includes: Patient Education: Education, Health Talks, Treatment Literacy, etc Emotional Support: counselling (individual & group), support groups, etc Social Support: social consultation, home visits, networking, etc This guideline is meant for being used by a Children Support Coordinator: one person in an HIV/Aids project, who is in charge of developing adequate Patient Support Services for children.
2. Child Development
This chapter explains the child's cognitive and psychosocial development, which helps to recognize the specificities of childrens way of reasoning, interpreting health, developing trust, autonomy and identity. This background information, completed with the individual information you have about the child you are working with as well as the cultural context, will guide you to choose appropriate ways of communication with children of different ages, at the reception, in the medical consultation, in the counselling sessions, etc. It helps finding an adapted language, the information to give, the process of disclosure and the tools to use.
3. Basic concepts for paediatric care and support

Because children are passing through several cognitive and psychological steps, its necessary to adapt the general approach in the clinics and with your staffs, and apply some basic concepts, related to children. The main principles are: * First, we are recommending to consider 6 different age-categories (babies 0-2; young children 24; young children 5-7; children 8-11; Teenagers 12-15; Teenagers 16-18). Each project should base its strategy on a global framework of tools and activities for children, grouped per age categories: children day at the clinic, toys, education and counselling tools (books, films and games), group activities (support groups, creative activities, performances, etc). * The medical care and patient support for a child must address 3 actors: the child, the caretaker and the family. * The project should try and make the whole clinic an environment in which the child feels at ease, physically and emotionally secure. For example, you can organise child-friendly wall decoration, children corner or childrens room, etc. * The whole staffs of the clinic (doctors, nurses, receptionists) need specific training on how to work and behave with children. They should know: - the basic elements of the psychology and development of a child - the importance of a child-friendly clinic, and a child-friendly behaviour with children - all the specific measures taken for the children in the project
* Deeper training on children counselling and support should also be provided to the staff in charge of patient support (counsellors, educators, social workers, community workers, and possibly some external partners) as they might not feel at ease in front of children. * It is essential to make the treatment and all medical acts, in the clinic and at home, the least unpleasant for the child. * An HIV/AIDS clinic should try to gather all children at the clinic on the same day of the week for their medical follow-up. This childrens day or family day will allow providing a better specific care and support to children (they will see that other children are like them, they access the childrens space, where they find games, toys, films, etc). * Like for the adults, it is essential to maintain coordination and coherence between all persons involved in the care and support of the child: - They should all know the childs story and current situation, - They should all be coherent about what they say to the child, - They should know what is each staffs role - They should exchange information on the childs case, discuss and take common decisions in case of problems.
4. Organisation of patient support for children

This chapter is reviewing all the different steps the child-patient is going through in the clinic (HIV counselling & testing, disclosure, initiation to ART, adherence and social support) and will give some ideas of tools and activities to develop with your child patient. You will first review the basics principles of counselling HIV infected children and their caretakers. This section goes over the attitudes and skills necessary for the counsellors to provide quality counselling; and gives some guidance on how to organize the individual and groups counselling sessions with children. After receiving some tips on how to increase the number of patient children in your clinics (patient recruitment); key issues and contents of the pre & post test counselling sessions with child and care takers are described. Then, based on MSF field experiences and some literatures review, the why, who, when and how to disclose is explained. For reminder, "disclosure" is the process by which the children learn about their HIV/Aids status. When working with children under 12, the recommendation is to go for "progressive disclosure": a gradual process by which a child learns about health, having an (unnamed) infection, treatment and finally hears his HIV status. The counsellors have to prepare and initiate the child and the care-taker for a lifelong ARV treatment. With young children, maintaining good treatment adherence will be the responsibility of the care-taker; he will need to understand the potential complexities in a drug regimen and help the child with the drug administration. Older children or adolescents should feel responsible for managing their own health and understand the essential aspects of treatment. Adherence counselling is an ongoing process by which counsellors support children and their families in maintaining good adherence to treatment (i.e. understanding the treatment, getting aware of importance of treatment, and deciding to take the medication prescribed by the doctor). Counsellors help to identify challenges to adherence and work with the children and their families to identify strategies to overcome the barriers.
Patient Support for HIV infected children 3
Social problems can also affect the patients ability to adhere to his treatment. An HIV/AIDS project should consider the child-patient social condition and problems (lack of food, poor shelter, no access to education, no dedicated care-taker, lack of money for transport, stigma, lack of a trustful person to talk to about his health problems, ) and refer to external social partners. This social follow-up is a key element in the strategy of defaulter prevention and defaulter tracing. The organisation of the patient support for HIV infected children will greatly be facilitated by using children specific tools and activities: counselling cards, flipcharts, posters, books, treatment reminder tools, activity sheets, creative activities, writing, handbooks, films, performances, games and fun activities. These activities facilitate health and treatment education, allow children to express their feelings, to develop life skills, or simply to have fun. This section presents the different types of tools and activities, and practical examples of each are provided in the DVD-Rom in annex 1.
5. Implementation of a children specific approach

This chapter examines how to practically implement, in an HIV/AIDS project, the different recommendations of this guideline. 1) All projects should implement a minimal package of services, which includes the essential elements of children support that should be provided to all child-patients (child-patients file, childfriendly environment, child-friendly staff, individual counselling, one set of counselling cards adequate for children of different class of ages, and one basic pill-taking tool for children). 2) Further to this, projects should try to go towards the recommended package. This includes a wider range of tools and activities which, when available, would greatly improve the support provided to the child-patients. As already mentioned in the introduction, an HIV/Aids project should name one person, the Children Support Coordinator, to be in charge of implementing a specific approach for the children support. This person will be responsible to develop a planning for the implementation of the Patient Support for Children and will apply the recommendations per age group.
Good luck and enjoy the readings
1) INTRODUCTION
1.1 History
Many aspects of an HIV/AIDS project need to be adjusted for paediatric patients: - Patient recruitment: entry points, strategies for VCT and PICT, different testing for infants, etc. - Medical treatment: FDCs, paediatric formulations, treatment protocols, etc - Patient support: education, counselling and psychosocial issues Therefore, all services and aspects of an HIV/AIDS treatment project need to be specifically adapted for children and youth. In the past, HIV/AIDS projects did not have a specific approach to care and support for young patients. Considering the problems encountered, and as MSF tries to increase the number of children in its projects, it became more and more important for the projects to develop a child-specific approach. With respect to medical treatment, care for HIV positive children has evolved rapidly. There is now: - Access to paediatric FDCs - Increased access to infant HIV testing via PCR - The release of the Guideline Treatment and Care of Children with HIV in MSF programmes (aka the Paediatric Toolkit) - Implementation of early treatment for babies under one year However, there still remains a great deal to be done in terms of specific Patient Support for HIV positive children: Patient Education Emotional/psychological Support Social Support Concerning the Patient Support, so far each HIV/AIDS project within MSF has developed its own approach to providing services, and conducting support activities with children. But this experience was not yet gathered, and there was no comprehensive strategy and recommendations.
1.2 Objectives
This Guideline presents explanations, recommendations, and suggestions for a comprehensive strategy of specific Patient Support for HIV infected children, in a resource-limited environment. It gathers the experiences, lessons learned and best practices, from MSF and other organisations. It should assist HIV/Aids projects in implementing or improving a specific approach on Patient Support for children. The Guideline is meant for being used by a Children Support Coordinator : one person in an HIV/Aids project, who is in charge of developing adequate Patient Support Services for children. This Guideline introduces a number of essential concepts, valid for all projects. But it is of course still very incomplete, and will require further development to follow the evolution of HIV/Aids projects: decentralization of patients to peripheral structures, increasing number of child-patients, early treatment for babies, specific problems of teenagers, etc These next steps will be possible thanks to the feed back, critics, and suggestions that the present guideline will receive from the field. We are waiting for your comments !
1.3 Patient support1

1.3.1 Definition The component of Patient Support covers all the activities aiming at supporting the patient in front of his disease and his treatment, beyond the purely medical aspects of care. The patient support is a continuum of progressive, personalised or peer-supported activities addressed to the patient, and going on all along the program. Main objectives for all patients are: - To understand and accept his HIV status or disease - To recognize the consequences of the disease in his everyday life - To adapt his behaviour (way of living) - To be involved in and adhere to his treatment To achieve all these objectives, the patients have to go through 3 complementary processes: 1- Educative process Patient Education This is about the patient understanding - the infection and the evolution of the disease - the transmission of the disease - the risky behaviours to avoid - the treatment This includes the following activities: Health Education, Health talks, Treatment Literacy 2- Process of emotional adaptation Emotional Support This is about the patient - dealing with the loss of his self-image and the loss of the good health - dealing with the stress caused by the evolution of the disease, the perspective of death, the uncertainty of the future and the reduction of capacities - dealing with the relational changes with his close relationships and occupational environment - dealing with the improvements and the changes brought by the treatment This includes the following activities: counselling (individual & group), support groups 3- Process of adaptation to socio-economic consequences Social Support This is about helping the patient to solve his social problems in order to improve his good adherence to treatment - risks of precariousness: financial resources, incapacity, loss of employment - risks of isolation, stigmatisation by family and community This includes the following activities: social consultation, home visits, networking, etc The Patient Support can be provided through 4 different types of activities: - Individual sessions: individual counselling (pre-test, post-test, follow-up, adherence, etc), social consultation - Group sessions: Health Talks, Educational talks, ART preparation sessions, Support Group, etc - Group activities: expression and creative activities, party, celebration, excursion, etc - Community and Family level actions: Home visits, Home Based Care, Defaulter prevention, Defaulter tracing, Community activities, etc
1
For more info, refer to the draft Patient Support document written by B.Laumont & G. Loots in the OCB
1.3.2 Patient Support for children Patient Support for HIV infected children carries a number of specificities: - It must be provided by staff having received specific training on children support - It requires specific tools and activities - It has to be adapted to the age, level of development and knowledge of the child (aware or not of his disease) - It includes also support to the care-takers of the child. 1.3.3 Who is involved in Patient Support to a child? The child himself As explained further, the child-centred approach means that the child will be involved as an actor in his own health and treatment. The child care-taker When admitting a child, it is essential to make sure to have at least one adult person (preferably 2) who will accompany the child through all steps, and provide him full support. The project will provide support to these care-takers, in order to facilitate their own support to the child. Staff from the Patient Support Team Within the Aids project, the patient support is provided by the staff from the Patient Support team. These have different names in each project: counsellors, psychologists, health promoters, educators, adherence nurses, social workers, peer educators, lay counsellors, ... Medical staff Doctors, nurses, laboratory staff, etc All are in contact with the child-patient. Even if they are not directly in charge of Patient Support, they need to have a child-friendly attitude, and adapt their work to the specificities of children. Other project staff Receptionist, guards, cleaners, etc They will also be in contact with the children, and need to have a child-friendly attitude. Partner staff Some projects establish collaboration with partner organisations : international NGO, local organisation, patient association, community volunteers, . The staff from these organisations participate to some parts of the Patient Support : social work, community follow-up, games or creative activities with the children
1.4 A child-patient typical history

To illustrate the various aspects of paediatric care and support, this section will follow the history of a child-patient, called Pedro, and his aunt, called Marta. The Counselling and Testing - When Pedro was 8, as he was coughing and being sick since a long time, Marta brought him to the paediatric consultation. The doctor suspected HIV, and informed Marta of the necessity to make the HIV test. - Marta received an individual pre-test counselling, where she was told the basics about HIV/Aids and got the opportunity to ask her question and expose her fears about the test. They discussed about the child history, and what he knew or thought about his health condition. After the counselling, Marta decided to make the test, both for herself and for Pedro. - Pedro and Marta went to a nurse, who nicely explained to Pedro that she needed a little bit of his blood to find out why he was so sick. After taking the blood, she gave Pedro a candy. - 20 minutes after the test, as Pedro was playing with the other children in the children space, a counsellor took Marta alone in a counselling room, and informed her that her own test was negative, and that Pedro was infected with HIV. He took some time to listen and support Marta who felt shocked, and then he explained her how things will be organised for following the childs condition. They discussed how to disclose his diagnostic to the child. As Marta was not yet convinced about the importance of telling the diagnostic, they decided to go for a progressive disclosure. - The counsellor then called Pedro, and in front of Marta, explained to Pedro that he was sick because of a microbe in his blood, and that the doctor will examine him and give him some drugs. He found the right words to make the child feeling at ease and less frightened of meeting the doctor. Following Pedros health - Since that day, Pedro and Marta had to come to the clinic regularly. - After a few visits, Pedro liked to go to the clinic, because people were nice to him. While waiting for the consultations, Pedro would stay in the children space, there were toys and he could play with other kids. Some adults were organising games and activities for them. - The nurse wanted more blood from Pedro, and he had to be brave, sometimes he was given a reward. - Then, Pedro and Marta could see the counsellor. He became a friend of Pedro and told him a story from a book, about animals having a disease, and treated by a drug. - Every month, on a Tuesday, he could meet other children of his age-group with the counsellor. They had activities around hygiene and health and played some nice educative games. He was very happy to meet some other children who had to go to the hospital like him. - Marta was also attending a Support Group, with other care-takers of infected children. They would receive explanations about HIV/Aids, and they could talk and share their experiences. - Marta asked also every time to be received by the social worker. After listening to Marta, as it was a long way from home to the clinic he would give her money, to cover for the transport. He also informed Marta about social organisations who could provide her with other assistance : blankets, mosquito nets, food, seeds, etc - When they were at home, a Community Volunteer was coming from time to time, to see how Pedro and Marta were doing, and to remind them not to miss the next appointment at the clinic. - Sometimes, Pedro was sick, and had to return earlier to the clinic, and receive a treatment.
ART initiation - After one year, when Pedro was 9, the doctor said it was necessary that Pedro starts ARV treatment. - Marta knew already about ARVs thanks to her participation in the group sessions but was invited by the counsellor to get more specific preparation. They discussed about how the child would take his drugs, what to do if he reacts to the drugs, - Pedro was also invited by the counsellor to participate with his aunt. The counsellor asked Pedro what he remembered about the story of the animals and made him understand the importance to take the drugs everyday, just like the animals in the story. And he gave Pedro a drawing, where he could thick, every time he was taking his drug. - Pedro received the drugs for 2 weeks. At the end of that period, he went back to the clinic to meet the doctor and the counsellor. ART Adherence - After 3 months, the counsellor said that Pedro was doing very well, and that he should only come every 2 months. - On each visit, he would do the blood sampling, then see the nurse, then the counsellor, and if Marta asked, she could see the Social Worker. - Pedro continued attending his Support Group once a month on Tuesday. - At the age of 10, one day, the counsellor invited Marta to discuss about her childs reactions when coming at the hospital. Pedro was indeed asking a lot of questions and the counsellors thought Pedro suspects his diagnosis and shows a need to know more about it. The aunt confirmed he asked a lot of questions at home but she didnt answer, as she was afraid of his reactions. After discussing with the counsellor, Marta decided it was time to tell Pedro his exact diagnosis but she requested the support of the counsellor. Together, they told Pedro that the little virus in his blood was called HIV. He said Pedro was now able to control that virus so that he would not hurt him. But he also explained that sometimes other children and adults dont understand the disease and recommended Pedro not to tell his secret to everyone, as he might find himself rejected. They discussed which persons should know and which not. - Pedro then started attending another Support Group, in which all children knew they were HIV infected, so they could discuss openly about the disease. After some difficult days following the disclosure, Pedro reacted better. He easily spoke about being sick with his friends Andre and Clara, of his new support group. - When Pedro was 11 years old, one day, Marta had to travel in the country and asked him to go by himself to the clinic. As he was feeling very well and wanted to stay with his friends, Pedro did not go to the clinic. 2 days later, the Community Volunteer came to the house. He was very nice, and asked Pedro what happened. He then explained that it was very important for Pedro to go, and then they went together to the clinic. - With the help of one adult, Pedro and all the children of the support group prepared a performance of theatre, dance and singing. They performed the show twice on the day of the children party, in front of a large audience. Pedro felt immensely proud of his performance, in front of his family, friends, brothers and sisters. Marta was very happy and expressed her feelings to the counsellor Im feeling so proud to see my boy is not only a sick boy but also a very happy boy like any other children !!! - When he was 14, Pedro started to complain that he did not want to go with Marta to the clinic anymore. So they agreed that he would go with the Community Volunteer. The counsellor was attending them both together, but then he would also see Pedro alone. Pedro knew the counsellor very long now, and he could discuss everything with him, including sexual education and the problems at home.
2) CHILD DEVELOPMENT
2.1 Why you need to know the basics of child's development?
This chapter gives you a brief overview of the child's cognitive and psychosocial development (more details in the annexes 2 and 3). It will help you understand the specificities of childrens way of reasoning, interpreting health, developing trust, autonomy, identity, This background information, completed with the individual information you have about the child you are working with as well as the cultural context, will lead you to choose appropriate ways of communication with children of different ages, at the reception, in the medical consultation, in the counselling sessions, ... It helps finding an adapted language, the information to give, the process of disclosure, the tools to use, Besides adapting your attitudes and approach in individual sessions, it will also help you to choose the way to organize the group sessions. Which age-categories are you going to put together? The annexes 2 and 3 should be considered as general references, keeping in mind the specific cultural knowledge of the target-group you are working with. Especially the approximate ages suggested at each stage have to be considered carefully. Every project should provide to its staff an adapted training about the development of a child, taking into consideration the local and cultural specificities. Unfortunately, there are few researches and references on most of our projects countries.
2.2 Cognitive development and evolution of a childs understanding of health

Cognitive developmental stages To define cognitive development, we refer to the constructivist theory of J. Piaget2 who considers intelligence as a general capacity of adaptation to new situations through cognitive processes. This means intelligence is not just issued form genetics and maturation but build up through experiences in our specific environment (home, school, culture, ). Piaget doesnt speak in terms of intelligence quotient (IQ) but in terms of cognitive developmental stages during which the child acquires a specific mental structure which leads to a particular way of thinking. The child's understanding of health and disease Based on different theories on cognitive development of the child, Koopman en al. developed the Trough the Eyes of the Child-model (TEC model). This model helps to understand the perception of the child regarding the causes of illness. This theory will help us to understand how the child develops his general conception of health and illness. The child's understanding of death In many contexts, staff is afraid of speaking about death with the patients and have a general tendency to consider children as passive people who can't understand things. Lying to children can seriously compromise their mourning process. Death shouldn't be a taboo and should be discussed when a child is concerned, e.g. when a close family member dies.
Jean Piaget is a Swiss philosopher, genetic epistemologist and developmental theorist.
10
The sensori-motor stage3 (0 to 2 years) The baby develops intelligence through perception of the environment and physical manipulation of objects. He has no mental representation of things, just a practical intelligence. Be aware of cultural differences at this stage. It is known, for instance, that African babies are more precocious than Europeans on psychomotor and psychosocial development. The baby doesnt understand the concept of illness but he "feels" the pain. He expresses himself through crying and physical agitation. He has no understanding of death but will suffer from separation if the dead person was a significant caretaker. Until two years, dead people are like sleeping ones who will wake up. The symbolic stage (2 to 7 years) The child develops mental representation of specific objects through acquisition of language, symbolic games, imitation, drawing, ... The egocentric mind, around 2 to 4 years, prevents the child to differentiate between his own point of view and the one of the others. He has some magic thoughts: all objects and natural phenomenon are alive, men make everything, nothing comes from coincidence,... Concerning his perception of health, the toddler can locate and name external organs of his body but has no representation of internal organs. The illness is limited to that place which is hurting and at the moment it is hurting. The childs imaginary and creativity can often be worse than reality. E.g. They give me medicines to punish me. My mummy left home because she didnt like me (Nobody told the child her mother died). Around 5 to 7 years, the child starts intuitive logical thinking but with big gaps. He is still concentrated on outside organs. E.g. the skin keeps everything together so blood cant come out. He makes links between proximity and contagion, between previously experienced symptoms and prevention. He first considers a dead person as somebody who cant walk, speak, and see anymore. He understands the concept of death for older people but doesn't realise he will die one day. Later, he makes links between illness, drugs, hospital, and death and starts getting afraid of his parents possible death, separation, ... and to assume he will die one day as well. E.g. When somebody has the flu and you go close to him, the next day you can be sick and he feels better. E.g. On the road for visiting her brother Tido at the hospital, a girl of 5 said to her mum: So it means Ali is going to die like uncle Tido (Uncle Tido died at hospital a few months before). The concrete operational stage (8 to 11 years) The school-aged child has acquired logical thinking to solve concrete operations like mathematics (multiple classification tasks, ordering objects in a logical sequence,...). He imagines internal organs and actions. He thinks by analogy: comparing a heart with a pump, a stomach with a food basket, ... Death is considered as normal: all living things die one day. He refers to biological principles, like no breathing. He starts wondering what happens after death. E.g. If you cough very hard, the germs come trough the air and somebody else will inhale it and then I think it enters the blood. And then you catch the flu. E.g. My rabbit died! And hop, he went to heaven! But not in the heaven very close because, can you imagine if I would take the plane and hello see the ghost of my rabbit walking there! The dead ones go to heaven, but very far. At least ... thats what they told me. The formal operational stage (> 12 years) The adolescent has acquired a hypothetic-deductive way of reasoning. He can think logically, even free of reality, build hypotheses and experiment them. On medical side, the adolescent makes hypotheses about the causes of the illness and makes the link between the symptoms and the function of the organs. He understands the chronicity of an illness and the concept of a life-long illness and treatment. Concerning death, the adolescent gets sceptical about going to heaven or any other theory given by adults on what happens after death but he will follow cultural beliefs.
The annex 1 explains the 6 substages of the sensori-motor period
11
How to use this theory on the field The interest of this theory is to have a frame references to understand the childs way of thinking and his perception towards health. If available, you can deepen it with local documentation. Keep in mind the impact of his personal environment, his culture, his education, and his family on his development. As every child has his own rhythm, he should of course be considered individually. The level of understanding of illness and death is very much influenced by the level of personal confrontation from the child to HIV/Aids and death in his surrounding. Children affected with chronic diseases as HIV/Aids generally evolve faster than children who never experienced illness or death. BEWARE! Keep in mind to address the child according to his cognitive developmental stage. If a child is 12 years old, you should consider him as a teenager, even if he looks like 7 physically. In our HIV/Aids projects, there is a higher risk to consider children younger than they are because of their physical developmental delay or disabilities.
2.3 Psychosocial development of a child

Basic emotional needs All children have basic emotional needs such as love and warmth, acceptation, self-respect, performance, urgency, independence, recognition and appreciation, authority and discipline. If those are very important for any child, they are even more for children infected or affected by a chronic disease such as HIV/Aids and confronted to various kinds of difficulties. Good response to the basic emotional needs will help them coping with the idea of being HIV+, supporting the physical aggression due to the illness, keeping self-esteem despite visible physical changes, facing stigmatisation and social exclusion, mourning different losses and/or deaths in the family, having strict attitudes towards taking drugs, taking responsibility for their treatment, ... The psychosocial identity and crisis According to E.H. Erikson4, the persons identity is a synthesis of personal, familial, social, cultural or ethnical, scholar, professional, sexual, religious components resulting from a process of accepting and refusing those identifications and the interaction between personal development and social influences. He describes eight developmental stages from infancy to late adulthood during which the person confronts, and hopefully masters, a new "psychosocial crisis". The term crisis doesn't mean a catastrophe but a period of greater vulnerability and a challenge to construct identity. It is a neverending construction of the person's identity. In MSF-contexts children often face accidental crisis, which cant be foreseen because they are linked to outside events, more or less unexpected and traumatising like physical insecurity and wars, facing a rape, mourning the death of family members, It is harder to tackle when the children we are supporting face both types of crisis simultaneously. Beside these traumatic events, we are often working with families in economical distress, with children not attending school or being socially excluded, which gives additional difficulties to face at different stages of life.
Erik Homberger Erikson was a developmental psychologist and psychoanalyst well-known for his theory on psychosocial development.
12
Main psychosocial developmental stages of the child This paragraph presents childrens evolution at different developmental levels, based on E. Erikson's theory and completed by other authors and MSF experiences on the field. The baby's first task, from 0 to 18 months, is to develop a basic trust. His mother is the most significant person. J. Bowlby5 considers attachment of the newborn during the first month a basic instinctive need. He should get unconditional love: know he will be loved and supported whatever happens. If he doesnt get this warmth and unconditional love, he risks distrusting, frightening for his security and getting anxious when discovering the world. Around 8 months, depending on the culture, the child can be afraid of unknown people and anxious of separation from his caretaker. Communication becomes richer and after one year he shows new emotions as frustration, angriness, jealousy, facing situations in order to get attention. From around 18 months to 3 years, the toddler wants to do all by himself and for himself and fights for autonomy. Autonomy should be gained by giving him reasonable choice and proper guidance. Parents should keep authority without excessively dominating the child. This stage of increasing emotional and physical independence is sometimes called the terrible twos. From 3 to 6 years, the child wants to be as big and powerful as his parents. The child wants to master the world around him and takes many verbal and motor initiatives to develop personal abilities. The Why? becomes his favourite question. The fears of something new can be very bad when accentuated by the imagination of the egocentric mind of the child. Rivalry with others may create feeling of guilt. The child can feel guilt over things which are not logically guilt producing. Keep this in mind when working with HIV+ children who can feel all kinds of guilt regarding to the illness and treatment. These children can join a group of peers to play with them for a long time. The fourth stage, from 6 - 12 years, is a learning period. The child learns to accomplish tasks and to know social law of society. Besides playing, he learns the pleasure of ended work, production, achieving goals, succeeding and being applauded. At the end of this stage, the child will have developed a sense of personal competence through encouraging his positive performances. It is base on the development of the childs self-esteem. Excessive control can create conformism or loss of the child's creativity, lack of acknowledgment can create insufficient self-esteem.
2.4 Particularity of adolescence

Building an ego identity The childhood ends with the age of puberty and adolescence, generally considered by authors as being between 13 and 18 years. The concept of adolescence and its timing are not universally shared. The adolescent faces a sudden physical maturing. He has to accommodate to major sexual modifications, to rebuild his body image and to assume gender identity. Many of them may feel uncomfortable about those changes and feel awful. When an adolescent is sick and his body is marked or disabled by a disease, the process of his identitys development may be more difficult. These physical changes and access to genital sexuality are often linked to an introspection process. The adolescent questions all identity components he elaborated in the past. His task is to achieve an ego identity and avoid role confusion. Ego identity means knowing who you are and how you fit into the society. Role confusion means an uncertainty about one's place in society and the world. A
5
John Bowlby is a British psychiatrist and psychoanalyst reputated for his works on attachment theory.
13
common question of adolescents is the straightforward question: "Who am I? This includes knowing "What have I been?" and "Where am I going to?" It ends with a deep sense of individuality. On the social sphere, the familys influence will progressively give room to the peer groups as the reference for behaviour norms and status acquisition. The adolescent has to feel the way that others perceive him is congruent to the way he perceives himself. The self-idealisation of the adolescent will take roots into personal project, self-growth and not anymore in response to parental wishes. Nevertheless, some identification to parents will always remain and they still need to rely on their parents for advice, security and material support. This stage is a kind of transition between childhood and adulthood. The adolescent goes through some bereavement process to evolve and become an adult: loss of parental protection, loss of childhood It requires to make a synthesis of the past experiences and to anticipate the future, to take all you've learned about life and yourself and mould it into a unified self-image. Adolescents react very differently to this crisis, some of them will pass a very difficult time, early or late, other won't even realize they passed through the crisis. In some cultures, children have already many responsibilities at a young age (e.g. 10 years old children being responsible for little brothers and sisters) and passing adolescence is just getting more responsibilities but not a major change in life. Social and cultural perspectives The transition from the powerless and irresponsible time of childhood and the powerful and the responsible time of adulthood may differ very much from one culture to the other. The notion of Childhood will be interpreted differently according to the culture; it is not only a physical and psychological developmental stage but also a social and cultural construction. We can easily refer to some ethnics where the end of adolescence is clearly characterised by rituals. Through traditional ceremonies and rituals, the community officially recognises the young as having become an adult. Boys and girls may be required to go through certain tests of endurance, symbolic ceremonies, or educational events. E.g. an adolescent boy may be asked to leave the village for a period of time to live on his own and accomplish some traditional tasks. It often happens in MSF contexts that an orphan adolescent will behave as a child on one side and as a responsible of his family (brothers and sisters) on the other side. They will say: Im feeling as a child but Im also feeling as an adult. In this case, its very important to consider both aspects of the adolescent's reality and behaviour. Early adulthood In the MSF contexts, some adolescents are already getting married and having children. This period of early adulthood can be very stressful to pass for adolescents living with HIV. Our experiences show they have to cope simultaneously with the difficult situation of disclosure to the partner, the contamination risks and/or guilt of having contaminated as well as their personal desire or social pressure for giving birth. These adolescents or young adults need a particular support.
14
2.5 Evolution in the children's way of playing and interacting

Playing as a developmental need Children of all cultures are playing; it is part of the developmental needs of the child. One of the main aims of playing is distraction and having fun. Some sick children are confronting to so much anxiety and fear of discovering the environment, that they lose the pleasure of playing. Other sick children are excluded from school or neighbourhood and lose their playmates. When organising activities for them, we shouldnt forget this first role of playing: enjoying the activity! Playing also helps the child to express his feelings: through symbolic games, role-play, manual activities, etc. It helps the child to develop moral and social values such as making difference between good and bad, telling the truth and lying, sharing, respecting the others, respecting rules, working in a team, accept losing, The child learns by using his senses : feeling, smelling, touching, seeing, hearing. Finally, playing encourages gross and fine motori development and physical well-being. Evolution in children's way of playing The small baby will only interact by reacting to familiar voices and smiling when being happy. Starting from 6 to 12 months, the child starts participating simple games like coucou, letting object fall on the ground, etc. From around 18 to 24 months the child likes solitary playing. He plays alone for short periods. He can look at a book, make a simple construction, pull something on wheels, ...He likes company of parents around him but doesn't need a partner to play with them. When he grows up, from 2 to 3 years, the child seems to show interest for the others. Actually, he wants to play with the toy of his friend but doesnt really play with the friend himself. Parallel playing means playing next to each other but not really with each other. The children are not really communicating verbally with each other; everyone has his own monologue. We call it collective monologues. In a third stage, around 3 to 4 years, we can see the child playing with a friend, using the same toys. This associated playing doesnt mean that they wont argue or fight. They will use the same objects for a while and then grab it from the other and then play again, ... But the child can share his toys, learns to wait for his turn to play, During this symbolic stage (until 7 years) the child likes the game "To do like if". The differed imitation, referring to reproducing models (imitation) but on a later time (differed), is one of the main activities of the child. This child also transforms reality according to his fantasy and wishes by playing symbolic games. Those are very important to help him expressing emotions and replay frightening events in a secure environment. The child starts colouring and drawing. Note that some children may not have the habit of drawing and holding pencils properly. It's generally just a matter of time. Let them choose between colouring a prepared drawing with black outlines (prepare some drawings about the theme you are working on) or free expression on white paper (on the theme of the family, or anything else).
15
After the associated playing comes the organised or cooperative playing. In the previous stage we talked about playing with one friend while here we are talking about playing with a group of friends. They have to adhere to some rules. The latest stage in game development is the competition game. The child has to respect the rules but also to accept losing. Always keep the notion of pleasure in mind. The child shouldn't come to the activities because he has to, but rather because he likes it and feels better with it. Whatever theme you want to work on (e.g. hygiene, the body, HIV) be creative in order to help the child catching this information in a nice context, without feeling in a school situation. Never ask What did we teach you last session? or Today, the lesson is ... but Who remembers what we spoke about last week? Who can explain the game we played to Alice who wasnt there last time? Today, we will start with a very nice story about a little boy who ...
16
3) BASIC CONCEPTS for PEDIATRIC CARE AND SUPPORT

3.1 Introduction
I dont like to go to the clinic because... The place is ugly I am the only child / I like to go to the clinic because...
the place is nice there are other children, with the same problems as me the people smile at me, they know my name, and ask Nobody looks at me, nobody talks to me me how I am there are games, toys, books, drawing materials, and a We have to wait for long, doing nothing TV. Sometimes a woman comes and organizes games and activities with us. the doctor is nice, sometimes he is funny The doctor frightens me These doctors tell me things I don't they told me a fairy-tale about animals having a disease and saved by a drug. understand, so I just say "yes" mothers speaks the same as the doctors, and helps me Mother never talks to me about what I have take my drugs It's not so bad : other children and even mummy has It seems I suffer something terrible the same, and the doctors can treat us. They ask me how I feel, I can talk about my worries I have fears, but I cannot tell them They take my blood, and it hurts, is that a They do it to check my health, it is not dangerous, and punishment ? Maybe one day I wont have then they give a candy blood anymore. At home, I have to take everyday this awful at home I take my drugs twice a day, like the animals in the book. I have a bet with the doctor : if do it syrup, and I have no idea why regularly for one month, he offers me a reward. I miss school for going to the clinic, so my friends all know that I am sick In the media they say their is no treatment for HIV, so I will die. I can go to the clinic before or after school, so my friends do not know about it The doctors explained to me about my disease, and have a treatment to improve my health, so I will not die. It is the same clinic where everybody goes, for all diseases The people there are nice, they understand me, even when I feel sad or if I did not take my drugs well.
My neighbours will see me enter the HIV clinic and they will understand that Im HIV+ Im going to undergo again an interrogation, the nurse will be angry at me again, because I didnt take my drugs properly. I wont understand what the counsellor will In the group we can talk freely about everything. explain in the group and the other children will laugh at me.
17
3.2 Age categories

According to the United Nations Convention on the Rights of the Child, a child means every human being below the age of eighteen years unless under the law applicable to the child, majority is attained earlier. According to WHO categories concerning AIDS, the group children includes patients aged 0-14 years, which means until their 15th birthday. This is the age limit considered also in the Fuchia software used by MSF. On a support level, we know adolescents needs are not the same as those of adults. Therefore patient support for children and adolescents should be available until 18 years. In order to develop appropriate strategies, it is necessary to identify age-categories. As a general rule, we recommend to consider 6 categories, according to the main developmental stages presented in the previous chapter. Babies 0 2 Young children 2 4 Young children 5-7 Children 8 11 Teenagers 12-15 Teenagers 16-18
The project should base its strategy on a global framework of tools and activities for children, grouped per age categories. Children consultation day at the clinic, toys, education and counselling tools (books, films, games), group activities (support groups, creative activities, performances, ), all these may be organised considering age groups. These categories may of course be adapted to the specificities of each project. When having few children, you can set wider age categories. Some services / activities / tools will be meant for a certain age category only (e.g. a book, a Support Group), where others might apply for several categories (e. g. children party)
Within this approach per categories, it will remain indispensable to consider the individuality of each child. Children are different, one from the other. A 10 years old child diagnosed at 5 and disclosed at 8, is not in the same situation as another child same age, who has just been diagnosed, and is not yet disclosed. A 15 year-old girl who had a baby, shouldnt be put with teenagers of 1215 who dont have sexual experiences. The needs of children change with age, and as their situation and health condition are changing. The needs depend on each ones personal history, social and cultural background, health condition, care-takers attitude, etc. Therefore, as explained further, it is necessary to have a child-centred approach, allowing to consider the specific condition of each individual child.
18
3.3 The child, the care-taker, and the family

The medical care and patient support for a child must address 3 actors: the child-patient The child himself is the first person to address and involve in his own treatment. his care-taker(s) The care-taker(s) will play an essential role in assisting the child managing his own health. his family The child family should also be involved into the global framework surrounding the child and his treatment. 3.3.1 The child-patient A child is not an object, left aside, as it is discussed between the staff and the care-taker ! Each child is an individual, having his own personality, his own specific demands, his own emotions, and ideas. He should be listened to, and involved in his own treatment and the management of his disease. Empower the child as a key actor in his own health and treatment! Recognise him as an individual, responsible for his body and health, rather than a number in the HIV cohort. A child-participative approach The child should not be seen as a passive drug swallower. He should be involved in his own treatment. This participation is important in the perspective of his development. To become responsible, it is important for them to be active participant of their treatment. The child participation should be adapted to his age, or level of development. Things should be explained differently to a child of 8, and to one of 15. Use different terms, and support tools, give more responsibility to the older ones, ... The doctor / nurse / counsellor / social worker should not talk to the care-taker only. From about 3 years old, the child should be gradually included in the conversation. A health-worker is often considered as an inaccessible person for the child. Try to change this perception by establishing a relation based on simplicity, openness, trust, respect. An appropriate consultation, or counselling sessions, or social consultation, will not start with filling a form of standard questions, talking only to the care-taker. It should rather start with a conversation with the child, in order to establish a link. How to improve the childs condition will not be determined only by a standard protocol on paper, or a framework of questions. The actual situation and needs of the child will determine the appropriate actions to be taken.
Remark: In some contexts, the concept of childs participation to his treatment and health can seem very new and unexpected by the health staff, and the care-takers, and it might seriously question their usual, and more directive, attitudes towards children. In this case, it will be necessary to train and convince the project staff first, and then ask them to sensitise the care-takers on the advantages of involving the child in his own health care.
19
3.3.2 The care-taker HIV infected children may live in very difficult family situations. They may be orphans, possibly living with an uncle, a grandmother, or a neighbour, they may be moved from one place to the other, they may be on their own, possibly in charge for younger brothers and sisters, The child unstable situation might jeopardize the whole work done with him at the clinic. At least one (preferably two) parent or care-taker has to continuously accompany the care and support of the child, at the clinic and at home. The presence of a motivated care-taker, actively participating to the childs treatment, is an essential factor for its success. How to identify the care-taker(s) When admitting a child in the program, it is necessary to identify one parent / care-taker who is committed to accompany him in the management of his disease. This person will follow continuously the treatment of the child, at the clinic and at home. This responsibility should not change frequently from one person to another. Besides the main responsible care-taker, there should be a second person who can take over, when the first one is absent, on travel, sick, or if he dies. The Social Workers (or counsellors if no SW) have the responsibility to identify these caretakers, and to make sure they understand and accept the essential role they play for the childs health. Ideally, the care-taker should be the person legally in charge of the child, although this is sometimes difficult to establish. The person should preferably be a family member, but this is also not always possible. In case of any doubt, the social workers should investigate and determine the exact relation between the child and the care-taker, and whether the child recognises the care-taker as his responsible parent. There may be a situation where a child arrives in the program, without any care-taker. He may be brought by a person who is not taking responsibility, or by a vague relative, or by the local social services, or he may live on his own, and possibly be in charge himself of younger brothers and sisters (Child Headed Households). In this case, the project must find the right solution between 2 constraints: If the medical condition of the child requires urgent care, the child should be treated without delay. Not finding any adult taking responsibility to follow the child should NOT be a reason for not admitting the child, or not starting ART. If treatment is not urgent, it is preferable to delay treatment, and find a more stable situation for the child before starting it. In both cases, the Social Workers should fully investigate the childs case, in liaison with the local authorities, and find a solution for him : either an adult taking responsibility, or placing in an institution. In some extreme situations, for a teenager without care-taker, based on his age / maturity, the counsellor / social worker may consider addressing the child alone, without a care-taker. However, even in this case, it is still necessary to identify, together with the child, a trust person, who could support him during difficult moments.
Close partnership with the care-takers Supporting the child should be a work done in close collaboration between the project staff and the care-taker. None of them can succeed alone. It is essential that the same messages are given to the child and confirmed from both sides. The care-taker should come to the clinic, and accompany the child at each step : nurse, clinician, laboratory, counselling, social worker,...
20
The care-taker is responsible of the child, and we need to confirm this responsibility. We have to work with him, and never substitute ourselves to him. The staff should make no judgement on the care-taker, and should not accuse him. Complementarity: The support staffs know more about the illness, and the way to support HIV infected children; the care-taker knows better the childs personality, and his physical and emotional changes. You may be the expert knowing about children development and counselling, but dont forget that the care-takers are the experts knowing the child, and in charge of his education.
The counsellor and the care-taker have to discuss and agree on the objective they want to reach. Both sides have to observe an open, honest, and trustful communication: even difficult information and ideas have to be shared. The care-takers should feel confident that the staff will not hide information. The staff needs to be confident that care-takers will tell the truth when they have a problem, e.g. when the child does not take the drugs properly. Mutual respect: both parties need to be open and respectful for the others opinions. In case of disagreement, there should be negotiations. For example, if the care-takers stops the treatment of the child, if he doesnt understand the need of taking the drugs, if they dont agree to speak with their child about his diagnosis, ... Flexibility: be open to adapt your working strategy to the specific situation of the care-takers, their ups and downs, the local support, ...
3.3.3 The family The whole family of the HIV infected child may be severely affected by AIDS: loss of several family members, fear of further deaths, poverty, stigmatisation, feeling of not controlling its own future, difficulty to discuss these problems, etc The proper adherence of the child to its treatment will depend, among others, on his mental wellbeing, which in turn, depends a lot of the family situation. It is necessary for the counsellors and the social workers to understand the family situation of the child: - Ask about the family situation when enrolling the child in the program - Make home visits, inform about the family history, its deceased members, the financial income, - Identify what are the main social problems of the family, and those related to AIDS. - See the position of the infected child in the family: is he accepted by the others, do they know about his disease, On some occasions, the project might provide some support to the family: - Help the family discuss its problems, and look for solutions. - Help the family find some assistance from other sources (networking). - See if the other children are not neglected because of their brothers disease - Invite more members of the family (brothers, sisters of the infected child, male parents, ) to Support Groups, educational talks, counselling sessions, the children party, - etc
21
3.4 Child-friendly environment

While each HIV/AIDS clinic will look different due to its context and resources, they should all have a few basic elements in common such as: - reception - waiting area - individual consultation rooms - children space - meeting rooms for Support Groups (this might also be outside the clinic) The project should try to make the whole clinic an environment in which the child feels at ease, physically and emotionally secure. This requires some reasonable budget and some imagination. Reception / Waiting Room: Child-friendly wall decoration Children corner (if there is no dedicated childrens room), with toys and furniture adapted to children.
Individual consultation rooms: (VCT, medical consultation, counselling, adherence, lab sampling) The child should feel welcome, and see the place is all right for him. He should not have the impression that he is introduced in something that belongs to other people, with no place for him. Child-friendly wall decoration Children adapted furniture: the child must have the possibility to sit, play, read, If white doctors blouse is believed to make children afraid, ask all staff to avoid using them with children. Medical office : - Have toys also, to keep the child occupied. Fake medical material, and a doll or stuffed animal allow showing the child what will be done on him and have him participate. - Support tools for health education: flipchart, story-books, Counselling / Adherence office: - Support tools for adherence: flipchart, story-books, pill-taking tools, ... - Have toys also, to keep the child occupied. Fake medical material, and a doll or stuffed animal allow to show the child what will be done on him and have him participate. - Items to facilitate drug swallowing (plumpy nut paste, water, ) Laboratory sampling office: - Nurses should have small gifts (candies, toothbrush, pencils, ) to give after taking the blood sample.
22
Children Space Children, like adults, are influenced in how they feel and behave by the total environment and the physical setting in particular. In the clinic, if possible, there should be a specific room dedicated for the children. This will allow them to play, read, see films, make activities with an animator, or attend group sessions. If a permanent room is not available, another room should be allocated to children, on the children consultation day. At the very least, one corner of the general waiting room should be organised as a children space. Child-friendly wall decoration: paint the walls with colours, and decorate them with paintings, drawings, posters, Encourage decoration made by the children themselves during the activities. You may also put wall decorations that are not related to healthcare or illness, but just nice and interesting for children. The furniture should be adapted for children: small chairs with low table, carpets, cushions, If this is not possible, make sure the floor is clean and safe for the children to sit and play on. Tapes or CD could play some music for children In this space, the children should have access to (suggestions): Physical activity toys: balls, big cushions or mattresses, 3 steps stairs to climb on, small house, ... Toys: puppets, dolls, cars, medical material (plastic stethoscope, syringe) Avoid sharp objects, no dangerous games, no weapon-toys. Games: puzzles, chess, checkers, Books for different ages. Drawing materials (drawings should be exposed on the walls) Big black board and chalk Television and video set. Showing films for children (cartoons, ) and educative films Only use washable material.
Staff or volunteers should organise the distribution of toys, and collect them back. Be careful with items that may easily be taken away: explain to the children that toys cannot leave the room. Do not restrict access to toys and games saying it makes them nervous or they will break them . Toys are meant for being used by the children. All toys are not supposed to be educative. Some can be for fun only! It is necessary to have a lockable cupboard to keep all children materials secure. Some adults (possibly partner staff) should play with the children, organise games, make creative activities, painting characters on the walls of the clinic, rehearsing a dance, or a song, This room should be dedicated full-time for children, if they come everyday to the clinic. If children come only on specific week days, the room may be left to other activities on the other days. In order to avoid stigma, when possible, this space may be made available not only for HIV infected children, but for all children, attending any medical or support services, or simply accompanying their parents. Clinic times/days should try to separate the children by age groups. This will allow the staff to conduct age-appropriate activities about relevant topics during clinic sessions. It will also allow children and teens of the same age to meet and engage with others in their age group.
23
3.5 Child-friendly staff

Children support requires well-prepared and motivated staff. As we have seen above, in some cultures, children do not receive much attention as individuals. The whole staff of the clinic needs training on the specificities of working and behaving with children. Regular supervision and support will help the staff to remain active, creative and adequate with the children and their care-takers. 3.5.1 All project staff Any staff working in an HIV/AIDS project might be involved in children care and support, and have some interaction with the children: receptionist, doctors, nurses, lab staff, counsellors, social workers, cleaners, community volunteers, other partners, etc ... Therefore, some basic information about the paediatric care and support provided in the project, and communication skills with children should be provided to all of them: - Inform that children of all ages may be tested, followed, treated, and they can become adults living a normal life, including having children - Explain basic elements of the development of a child - Explain the importance of a child-friendly clinic, and a child-friendly behaviour with children. - Present all the specific measures taken for the children in the project, and make recommendations to the staff. - Avoid impersonal procedures where the child is moved from one place to the other without any personal attention Training / sensibilization The project should organize basic sessions on paediatric care and support, lasting about half a day, and meant for all staff that will not have the more complete training6. 3.5.2 Staff in charge of Patient Support These are the key persons, in charge of providing Patient Support, to the child and his care-taker: counsellors, educators, social workers, community workers, possibly some external partners, Ideally, there should be no specific "paediatric counsellors", nor paediatric support team. The Patient Support Team should be one only, for all patients. All its members should be able to attend both adults and children. Therefore, they all need to be trained on paediatric support. However, experience might show that some counsellors perform better than others with children. Example: A counsellor might not have a good contact with children, or not be at ease, or not motivated. He might not manage to put the child at ease, he might talk all the time without listening In such cases, it could be useful to identify those counsellors who are not connecting well with children, and maybe keep them working with adults. Whenever possible, the child should be consulted by the same counsellor every time, in order to keep trust and a coherent follow-up. The lack of staff well-trained and motivated on paediatric support is a major gap in several MSF programs. It is necessary to recruit and train adequate staff for the support of childpatients.
For the content of the training, refer to the annex 7 : Training on Support to children living with HIV/Aids
24
Required Profiles When recruiting staff for the Patient Support team, interesting profiles will be counsellors, psychologists, social workers, sociologists, educators, teachers, trained people living with HIV/Aids, Community Volunteers,... (Nurses may also make good counsellors, but in many countries, they are not many, and preferably oriented to medical tasks.) It is not indispensable to ask for a previous background in HIV/Aids, as the appropriate training will be provided by the project. It is important to assess the competence of your future counsellor in their openness towards children, active listening, counselling, group animation, ... All members of the Patient Support Team should be trained / competent on the following topics: Understand the basic medical aspects of paediatric HIV/AIDS: transmission modes, PMTCT, testing, drugs, treatment, breast feeding, OIs, side effects, TB, nutrition, Understand the common psychosocial issues of HIV infected children. (More specific mental health troubles and psychiatric cases should be referred or oriented to local specialists if available.) Know the project strategy for child-patient recruitment, and be motivated to make it work. Know the basics of the child development Have good communication skills with care-takers and children. Know different techniques for supporting children of different ages (games, books, talks, creative activities, ) Have good pedagogical competences, capacity to explain, animate groups, and organise activities, in a way adapted to childrens ages.
Training7 - All staff from the Patient Support team should be trained on paediatric counselling and patient support. - Presently, it is very difficult to find adequate training on child-patient support. Few countries have it as a specific module in the training for counsellors. Some NGO or local organisation might propose such training. When no other solution is available, the MSF project should organise itself a training on Paediatric Support, for its staff.
3.6 Child-adapted medical care

It is essential to make the treatment and all medical acts, in the clinic and at home, the least unpleasant possible for the child. We have seen above that the consultation room has to be organised as a child-friendly environment, and that all staff, including medical staff, have to be trained on easy contact with children. This section will examine how the medical care itself can be organised in a child-friendly way. Organisation of care - As much as possible, try to avoid tossing the child around the hospital, for lab, drugs, counselling, food support, etc - Allow the permanent presence of the care-taker with the child.
For the content of the training, refer to the annex 7 : Training on Support to children living with HIV/Aids
25
Treatment - When a choice is possible, try and find the medication that is easiest for the child to take, considering his age and capacity. - Use FDC to limit the number of pills to swallow - When adult pills must be cut for a child treatment, it is preferable to have the pill-cutting done by the staff, so that pills are given already cut, to the child and care-taker. - Know the different techniques for helping a child to swallow pills: o Smashing the tablet in powder, mixed with water or other liquid. (Remember that some tablets may not be smashed). o Plumpy nut paste to cover taste buds before swallowing medications o Mix the powder with another powder changing the taste. o Taking the medicines with food or sweet drinks - Syrups are easy for a child to swallow, but they bring other difficulties. (Need of a fridge, difficulty for some care-takers to measure the correct quantity of ml in the syringe). - Have small reward presents to encourage children (pen, candy, fruit, ...) - Try to act on the side effects: provide pain killers, drug against nausea, Injections / blood taking The blood taking might be very hurting and frightening. - Try to do the blood taking in a distant room, so that the other children will not hear the screaming, which may generate stress. - Explain to the child what will be done, and why, using puppets - Make sure to have the blood-taking on children done by staff who is well trained and experienced and known for doing it with minimal pain. - Give a candy after taking the blood sample, on the first occasions. However, this should not become a systematic practice, as the child should participate by understanding the necessity, and not for a reward. - Congratulate the child for being brave.
3.7 Children consultation day at the clinic

An HIV/AIDS clinic should organise all the children of a same age-category to come to the clinic on the same day of the week for their medical follow-up. This childrens day, or family day will allow to provide a better specific care and support to children. The Children Day allows to provide a better specific attention: - They will see that other children are like them. - They access the childrens space, where they find games, toys, films, (in case the room is not permanently dedicated for children, and is used for other purposes on other days). - They participate to group activities, organised by educators or volunteers (drawing, creative activities, dance, singing, ) - They may get food and drinks, given by the volunteers - The Support team organises Group Sessions: Educational Talks, Support Groups, - The project may have a paediatrician coming on that day for difficult medical cases. How to organise childrens day: - As much as possible, try to allow each child to attend the clinic without missing school. Having to miss school is a factor of defaulting. Make very wide opening hours on the Children day, and attend the under 6 (not going to school) during the less crowded hours.
When possible, it is good to have specific moments for specific age groups. E.g. teenagers in the afternoon. If there are too many children, the project may have 2 or more childrens day in the week, again trying to work with age groups. When he is himself a patient, the care-taker of a child-patient should have his consultation on the same day as the child (i.e. on childrens day). (One-Stop family shop) Children coming on other days should of course be attended, with repeated recommendation for coming on childrens day. Stabilized children may be decentralized to a peripheral structure, having only a few patients. In this case, it might be pointless to make a childrens day in that structure. However, it would still be useful to carry on with the Group Sessions at the central level. The Patient Support Team should therefore keep contact with all decentralized children-patients, and organise activities in a central place, where they might still meet the other children, possibly once a month.
3.8 Multidisciplinary approach

It is essential to maintain coordination and coherence between all persons involved in the care and support of the child: Medical staff: doctors, nurses, laboratory staff, nutritionist, pharmacists, Patient Support staff: counsellors, social workers, educators, community workers, ... They should all know the childs story and current situation, without asking him or his caretaker 5 times the same questions They should all be coherent about what they say to the child, how to explain the illness, ... They should know what is each staffs role, and what he will do with the child They should exchange information on the childs case, discuss and take common decisions in case of problems.
3.8.1 The Patients files The child-patient history and current condition is recorded in his patient file. This file is made of 3 parts: 1) The medical file File started and updated by the clinician in charge of the treatment. It contains all lab tests results, weight, height and other measures, and the whole patients medical history, including the nutritional status, and, if applicable, the type of food support received. 2) The counselling file File opened and updated by the counsellors. It informs on the child knowledge about the disease, his evolution and current position in the progressive disclosure, his emotional reactions, his attitude towards the disease and the treatment, the attitude of the care-takers, the specific problems encountered with the treatment, etc 3) The social file File opened and updated by the social workers. It informs on the child and family social situation. Where does the family live, in what conditions, what are the main problems encountered by the family and the child (school, health, shelter, money, food, stigma, ). It may include a report of home visit done by a social worker or volunteer. It should mention the solutions proposed to the family (networking, support from a local organisation, cash for transport, ).
Filling and reading the patients file It is impossible to remember all patients counselling sessions and consultations. And the staff attending the child and his care-taker might not be the same from one session to the other. It is therefore essential to record the happenings of each session. - At each session (medical, counselling, or social), the staff doing the consultation should complete the file by writing the date and a few lines, telling the childs situation, and the recommendations made. - Prior to meeting with children and care-takers, the staff should read the files and be up to date with their individual situations. How to keep the patients files It is recommended to have one single common patient file, with all 3 parts in it. - To make it easily accessible, it is recommended to use pages of different colours to distinguish the medical / counselling / social pages. - The complete file accompanies the child-patient in the different steps: clinician, nurse, counsellor, social worker, - The advantage is that all information is directly available for any staff when he attends the child and his care-taker. In some projects, a single file is impossible, and there are 3 separate filing systems. In this case, it is essential to pay attention to the following: - In order to speak adequately to the child, all staff should be informed on the childs current disclosure status. If they do not have access to the counselling file, they should receive that information by another channel. E.g. in a coded way in the health book, or in the medical file. - The medical and counselling file should contain summarised information about the social situation of the child and his family. - The counsellor and social worker need to know how the child is adhering and responding to his treatment: does he take ARVs correctly, what are the CD 4 counts, 3.8.2 The Therapeutic Committee The project should organise meetings gathering all persons involved in the childs case: doctor, nurse, counsellor, educator and social worker. If there are too many cases, and not enough time, the committee should consider only the most problematic cases, or those reaching a key step (like ART initiation). They will exchange the latest information about each child: Health condition of the child Education : what does the child know about the illness and the treatment, Decisions made by the care-taker concerning disclosure, current stage of disclosure Reactions of the child about his illness. What are his questions or concerns? Reactions of the care-taker. Adherence to treatment: how does he takes the drugs, difficulties of adherence, ... Response to treatment Child and family social situation: parents, care-takers, orphan, brothers and sisters Social environment Social problems mentioned by the family: transportation costs, employment, livelihood, school related issues, etc. Social support provided by the project
28
This allows each actor to have a better global understanding of the childs condition, and they can discuss and agree on the working strategies. Even though they are time consuming, it is highly recommended to hold such Therapeutic Committee meetings. If a project does not install such meetings, it is indispensable to organise the transmission of basic information on each case, on paper in the patients files, and to still have discussions for each particular problem that may appear.
29
4) ORGANISATION CHILDREN
OF
PATIENT
SUPPORT
FOR
4.1 Basics principles of HIV counselling for children

This section will briefly discuss the basics principles of counselling HIV infected children and their care-takers (more detailed information can be found in Annex 4). It reviews the attitudes and skills necessary for the counsellors, and provides some guidance on how to organize the individual and groups counselling sessions with children. Counselling HIV infected children and their caretakers targets 2 goals: - To empower them to live positively. This entails providing them with necessary and relevant information, helping them make informed decisions, helping them recognize and build on their own strengths but also understanding and supporting their emotional needs and coping systems. - To manage good adherence to treatment, and therefore a good health. 4.1.1 Basic counselling attitudes The job is not limited to educating and advising. It is about listening, understanding, supporting, helping the child and caretaker making choices, orienting them, ... Good counselling techniques for children are of little avail, if the counsellor does not have the proper basic attitudes. A trusted relationship It is critical to build a strong link with the child and the care-taker in order to develop a trusting relationship. Without trust, counselling sessions cannot be successful. Confidentiality is a key component of developing trust. The children and care-takers must be confident that the counsellor will maintain confidentiality over anything that is discussed in the counselling sessions Neutrality and unconditional respect The child and care-taker have to understand they will be respected by the counsellor whatever happens. Their beliefs, feelings, attitudes, behaviours have to be treated in a neutral way. Counsellors take a non-judgmental attitude. Empathy The counsellor should try to read the things from the perspective of the child and/or the care-taker; without feeling himself overwhelmed by the problem. It's a way of being emotionally objective. Positive approach Believe in them and listen to them. Too often, adults talk down to children because they think they know whats best for them. They do not consider the childrens thoughts, feelings or desires. Be open and flexible The counsellor should feel comfortable to speak about delicate topics like illness, death, sexual relations, ... being straightforward, while also respecting the education, culture, and beliefs of the child / family.
30
4.1.2 Basic counselling skills Body language The counsellor uses body language (i.e. make eye contact, nod head, smile, lean toward the child) and non-verbal communication to encourage the child/care-taker to talk, convey empathy and demonstrate that he is listening. Closed and open ended questions Open-ended questions (tell me about ) allow for greater communication by encouraging the child/care-taker to elaborate and give specific examples while closed-ended questions (that can be answered by yes, no, or short factual answers) are useful for obtaining specific information and identifying parameters of a problem or issue. Paraphrase This technique shows the children/care-takers that the counsellor understands what they are saying and helps them by simplifying, focusing and crystallizing what they said. It provides an accuracy check on the counsellors perceptions or understanding of the conversation and may encourage the children/care-takers to elaborate on certain points. Summary The counsellor summarizes key elements of the conversation by identifying a common theme or pattern. This helps bring the whole discussion into focus. Reflection The counsellor verbally reflects the children/care-takers feelings back to them to help them feel understood, express more feelings, manage feelings and discriminate among various feelings. Give appropriate information Information should be provided in appropriate quantity and form. Give only necessary information, no need to overload children and care-takers with unnecessary information. In MSF missions we often see the opposite situation, where the staffs dont give enough information. Use simple words When using verbal communication, the counsellor should use simple words. Language has to be adapted to the child/care-taker, avoiding difficult technical word used by health staff. Use play, games and educational tools Counsellors need to adapt their counselling techniques and strategies to meet the child where he is by using verbal (i.e. words) or non-verbal (i.e. tools, games) communication as appropriate. Counsellors should understand that each child is different and different approaches work with different children. They don't express themselves in the same way as adults. Very often, they are not used to talk to adults about their fears, feelings, Consequently, there are many counselling techniques for children. See the section of the guideline presenting the various types of tools and methods that can be used in providing counselling and health education for children.
31
4.1.3 Individual sessions for children Individual counselling should be used for: Counselling previous to testing The disclosure process ART preparation and initiation Addressing specific topics of the child: problems at home, at school
Small children may not be able to understand the information being presented or asked in the counselling sessions. Many aspects of care will therefore fall upon the care-taker to provide for the child. The care-taker will help facilitate the childs understanding of his illness and treatment, and repeat the messages at home. Whenever possible, it is better to have them attended by the same counsellor at each visit. Under the age of 6, the counselling sessions will mostly be with the child and the care-taker together, except when you suspect some problems that would require hearing the care-taker or the child alone. From about the age of 6, it is ideal to conduct different sessions, with different content, either with the care-taker alone, or with the child alone, or with both together. From about the age of 12, most of the counselling work will be done with the adolescent alone. However, it is necessary to keep the care-taker coming and involving himself in the adolescent support. The counsellor should keep a patient file, in order to follow-up the level of disclosure, the adherence, and general educational and emotional information gathered about the child.
With the child alone Some topics should be discussed with the child without the care-taker: - The child may feel liberated, by having the opportunity of talking to someone who is not his family or the doctor. - A teenager may want to be attended alone. Possibly for saying things he wants to keep confidential or ask questions he wouldnt dare to ask to his care-taker (e.g. sexuality). He must be assured about the total confidentiality of what he says, including towards the care-takers. - The child may have several problems related to the care-taker, which he would not mention in front of him. - There might be other reasons to believe that the child might talk more freely when alone. With the care-taker and the child together (shared consultation) Progressive disclosure, total disclosure and ART preparation should preferably be done together with the care-taker. Even other difficulties, like behavioural troubles or emotional disturbances of the child can be discussed together (sometimes after a first session with the care-taker alone). Make sure to always give a balanced attention to both the child and the care-taker. It happens often that children below 10 years do not receive enough attention, while care-takers will be left aside when the child is adolescent.
32
Tools for individual sessions (find more info on this in chapter 4.7) Basic tools to keep in the counsellors room - Counselling cards - Little story books - Pill-taking tools - A doll can be used to show on it what you are going to do 4.1.4 Group sessions for children Topics to address in group sessions with children General health: germ theory, nutrition, exercise, etc. General sanitation and hygiene: clean water, wash your hands, etc. Human anatomy and physiology: blood components, immune system, etc. HIV/AIDS- related: transmission, opportunistic infections, etc. ART- related: adherence, side effects, mutation, resistance, etc. Other diseases: malaria, cholera, sexually transmitted diseases, etc. Living with HIV/Aids: disclosure, emotions, coping, stigma, exclusion, family, positive living, etc. Adolescence: life skills, relationships, sexuality, marriage, future planning, etc. and others depending on your specific program Im back to life ... I saw myself as dead, but in the group I recovered my life ... I realised I was a child like the others, that people notice me. That I have the right to play ... J, 15 years, cited in Childrens words, MSF-B Rwanda
Tips for organising group sessions Organise the groups according to the ages of the children Never mix children who are totally disclosed with others who are not or only partially disclosed. Ideal number is around 10 participants in a session. As children can be sick or absent for any other reason, you can easily enrol about 15 or more children in a group (especially at the beginning). Two counsellors are needed, as individual help will be necessary to assist children who cant read, who are stuck on a question, who need emotional support, who need a translation, ... The group is a safe environment with some rules permitting the children to feel comfortable and free to express their thoughts, feelings, about the illness. A support group session in NOT a school session. Dont teach the children but use playing tools and activities to transmit information. The group should always remain an attractive place to come, not a boring or compulsory place to go.
33
4.1.5 Side Activities for children Further to the individual counselling and group sessions, it is interesting to also organise other activities with the children, like: - Creative and writing activities: Body Maps, Hero Books, memory tools, ... - Performances in public: theatre play, drumming, parade, song, dance, ... - One day trip, party, etc Such activities allow emotional support: - it allows the child to express his personal feelings, - it demonstrates the childs capacity to achieve something, - it develops the spirit of mutual support, - it makes the child feel useful to the community, - it brings fun, happy moments - globally, it increases the child self-esteem. - some activities are educative Such activities are definitely a good thing, but should not necessarily be conducted by the MSF project itself. Whenever possible, the project should look for partners (other NGO, CBO, volunteers) who could organise these side activities, possibly with some support from MSF. 4.1.6 Counselling care-takers The psychosocial wellbeing of the child is very closely linked to the wellbeing of his care-takers. The Support Team should provide education and psychosocial support to the care-taker, in order for him to be able to support and accompany the childs treatment. The care-takers will bring their other children for testing, if they understand and trust the treatment, and if they see that the first one is well taken care of. As care-takers may or may not be the childs parents, and may or may not have HIV themselves, counsellors must tailor each counselling session according to the needs of each family by first assessing the care-takers situation, knowledge, attitudes and behaviours with respect to HIV/AIDS and PLWHA. Objectives of the support to the care-takers Help them accept the situation, analyse it, and take decisions Improve the self-confidence of the care-takers, make them feel able to deal with the illness of the child. Keep or improve the communication between the care-takers, concerning the illness of the child. Explain how to address the child, depending on his age. Explain the disease, and the treatment for children Encourage and support them to communicate with the child about the illness Prepare them to understand the childs reactions, and be able to respond to the childrens questions, reactions and needs Establish relations between the care-takers and local partner organisations for long term support
34
Individual sessions for care-takers Some topics should be discussed by the counsellor with the care-taker only, without the child: - For speaking freely about the case, the care taker may have some information that the child should not hear. - For disclosing the test result and discussing how to disclose his status to the child. - For assisting the care-taker who has not yet accepted the situation, and how to face it - For discussing some behavioural problems of the child at home, social relations with the peers, school results, ... - For discussing potential challenges to adequate care of the child, and working together to find solutions - For listening to the family situation, the care-takers feelings and concerns: provide psychosocial support to the care-taker as needed with respect to his own situation as well as that relating to the child. Groups sessions for care-takers Organizing group sessions for care-takers will allow the following: - Educational talk about the disease and the treatment for children - Care-takers may exchange their worries, and share experiences, on testing the child : parents having done the test may convince those who are still hesitating. - The same goes for the disclosure. Care-takers having difficulties to disclose his status to a child may receive great support from those who have done it. - They can share helpful tips relating to the care of HIV infected children (taking medicines, adherence, dealing with side effects, nutrition, ) - They can share other types of problems (stigma, adolescents, answering difficult questions, ) - Further to the sessions, it is very useful to provide to each care-taker a booklet, with the basic instructions concerning the child health and treatment. Specific concerns when the care-taker is HIV positive The one-stop family shop: - The HIV+ care-taker of an HIV infected child should be allowed to have his consultation on the same place and day as the child. - If the HIV/Aids project is decentralising the stabilised patients to peripheral structures, while keeping special cases at the central clinic, a care-taker under treatment who has a child under treatment should be allowed to keep coming to the same clinic as the child. - However, sometimes a care-taker might feel uncomfortable being attended on the same day, if he has not yet disclosed his own status to the child. It is then necessary to propose a discrete solution, or allow him to come on another day. Specific concerns when the care-taker is NOT HIV positive The care-taker might not know much about AIDS and you should provide all necessary information. The care-taker and his family saw the childs mother being sick, unable to do anything, and then dying. They believe the same will happen to the child, he is going to die anyway, so they are not motivated to take care of him. They will have many questions and concerns about how to protect themselves (and their children), while taking care of the HIV infected child. It is essential to listen to these concerns, explain the risk of transmission, and discuss attitudes, beliefs, stigma and discrimination.
35
Specific concerns with the care-taker of an orphan The care-taker of an orphan is sometimes less motivated than a direct parent, and may even neglect the childs health. The child may be perceived as carrying the death of his parents, and the disease. The family is afraid of HIV contamination to the other children. Family members stay away from him. The family already has many children and orphans to take care of. They worry more for the older children and the HIV negative ones, and they care less for the very young babies and the HIV infected ones, whom they might not even bring to the clinic. The care-taker is often a grandmother, who might be illiterate. She may prefer traditional healers. Or she might have a poor memory, and not remember when is the next day for going with the child to the clinic. They probably have less information about HIV and should be invited to enough counselling sessions.
4.2 HIV Counselling and Testing of children8

4.2.1 Patient Recruitment of children Children on HAART represent only 7.7% of the total cohort of PLWH under ART in 2005 and in 2006. In parallel to the activities to prevent new HIV infection in newborns, MSF commits to go for different strategies in order to get more children on treatment: Increase enrolment of children by - Better promoting testing of children of HIV positive parents encountered in our projects (family approach) - Improve clinical suspicion of HIV in children (training of staff) - Increase specific entry points (paediatric wards, TB wards, TFC, PMTCT...) - Early diagnosis by use of PCR for children under 18 months and possibly use of DBS when necessary to be able to have access to the PCR9 The HIV/AIDS project has to develop a strategy of patient recruitment towards babies and children.
How to develop patient recruitment for children: Here a brief overview of different possible actions (depending of each context and project), meant for increasing the number of children tested and admitted in the project. 1) Voluntary counselling and testing (VCT) In the case of young children, voluntary should be understood as decided by the care-taker. Recruit through adult patients followed in the HIV project - The patient file of an adult should mention how many children he has, and whether they have been tested or not. - The adult-patients who have children should be continuously counselled and encouraged to bring their children for testing. - The message may be given in the medical consultation, at the educative talk, in the waiting room, during individual counselling, or the social consultation, or in Group sessions,
8 9
More detailed information on counselling and testing for children in annex 6 HIV/AIDS policy 2008 MSF OCB
36
2) Provider-initiated counselling and testing (PICT) Health facilities represent a key point of contact for HIV exposed and infected children who are in need of HIV prevention and treatment. Many opportunities to diagnose HIV and provide care to infected children at health facilities are currently being missed. Provider-initiated HIV testing and counselling aims at facilitating diagnosis and access to HIV related services. Provider-initiated testing and counselling (PITC), or "opt-out strategy", refers to HIV testing and counselling which is recommended and initiated by health care providers for persons attending health care facilities. Guidance from health care providers is therefore not neutral. The major purpose of such testing is to make specific clinical decisions and/or offer specific medical services that could not be done without knowledge of the persons HIV status. In the PITC strategy, the test is presented as being part of the routine package of diagnostic activities; parents/care takers are informed that it will be performed unless they specifically decline it. RECOMMENDATIONS FOR MSF PROJECTS: - Irrespective of the prevalence in the country/area, parents /care takers of all children presenting with signs, symptoms or medical conditions that could indicate HIV infection, should be proposed by health providers that the child is tested for HIV. The same applies to children of HIV positive adults and for siblings of HIV positive children. - In high prevalence settings, all children hospitalized in medical / pediatric wards and nutritional units, should also systematically be proposed an HIV test. - Provider-initiated testing and counselling should always be accompanied by a package of HIV prevention and treatment activities including an aim to provide ART. ART may be provided by MSF but patients may also be referred to services run by other providers. - When recommending HIV testing and counselling, providers should always aim to do what is in the best interest of the child. This requires giving parents / care takers sufficient information to make an informed and voluntary decision to have their child tested, maintaining confidentiality, performing post-test counselling and making referrals to appropriate services. 10 Organising this requires considerable efforts: - Staffs from all medical structures need to be trained on detecting HIV suspicion on children from clinical symptoms. - For not losing a patient suspected of HIV, there must be a good coordination between the different services in the hospital, and with the peripheral health structures. - Enough staff must be available for responding to the increased demand for children counselling and testing. 3) Identify partners associations to develop actions of awareness towards the general public and teenagers: The objective is to inform and convince the parents and care-takers to bring their children for testing. These partners associations should try to: - Spread message Children can be tested and treated for HIV in the community - Motivate the population, if they seem to neglect testing their children at risk - Go to schools, and other places of activities for teenagers to spread messages of prevention, against stigma, and promoting testing.
10
Treatment & Care of Children with HIV in MSF programme- MSF Intl. AIDS working group recommendation, January 08, p. 17
37
4) Collaborate with institutions taking care of Orphans and Vulnerable Children: - Take contact with the orphanages and children day-care centres. - Take contact with the government social services, which are in charge of orphans, and abandoned children. - Consider the possibility of testing these children. Make sure to have the necessary agreement of the person officially in charge of each child, and that this person engages to guarantee access to treatment. Remarks about babies and children testing 1. A project should develop patient recruitment of babies, and at the same time develop PMTCT. It would not make sense to make efforts to detect HIV infected babies while not making efforts for them not to be infected. 2. It is important to make sure that the project staff itself is not reluctant and feels comfortable and motivated about testing children, otherwise inform and train them. 4.2.2 Pre-test counselling Key issues Children should only be tested with the presence and consent of a confirmed care-taker. Another reliable adult of their choice should accompany adolescents who don't want to inform their care-takers The child and the care-taker should receive a pre-test counselling, provided by a support staff trained in HIV counselling. If possible, it is much preferable to conduct individual pre-test counselling. When not possible, group sessions will be conducted, but this allows less individual assessment of each case. Testing a child raises two questions: disclosure to the care-taker & disclosure to the child. Depending on the child's development and the care-takers attitude towards disclosure, different steps may be adopted. The child has the right to be involved in all decisions affecting his life and to make his views known according to his maturity level and developmental stage. See also the chapter HIV Diagnosis in children, from the MSF Guideline Treatment & Care of children with HIV in MSF programmes. Counsellor and care-taker Counsellors should first speak with the care-taker only. Meanwhile, the child should be welcomed and occupied in the children's area. This first part of the counselling should include: 1. Introduction: the counsellor should welcome the care-taker, introduce himself, explain his role, and the procedure of counselling and testing, find out if voluntary or referred visit, explain the principles of confidentiality. 2. Classical steps of HIV counselling with adults: knowledge and perception about HIV/Aids and contamination modes, risks analysis, explanation of possible test results, readiness of care-taker to hear the results, 3. The counsellor should determine if the care-taker is the primary care-taker of the child (and get informed consent) 4. Assess the family situation: has the care-taker been tested (and possibility of making test), are there HIV positive parents in the family, mother who died, ...
5. Find out what the child knows concerning his health and the reason of his visit 6. Whats the maturity and developmental level of the child (through simple conversation about age, going to school, speaking about health at home, his reactions when being sick, what did they say, emotional maturity, ) 7. How much information can be given to the child in pre-test & how should a possible positive result be announced to the child (immediate total disclosure, progressive disclosure11,). The care-taker should feel confident that you won't tell things to the child if he/she doesn't feel ready for it. These last three points will determine how to continue the second part of the counselling when working with the child himself and his care-taker If testing an infant, with DNA-PCR, the test result will only come after a few days. Therefore, the counsellor (or a social worker) should include social identification, in order to be able to trace the mother and the baby if they do not come to get the result. The care-taker must understand and agree that someone might come to his house. Counsellor, care-taker, and child The child will then be asked to join his care-taker and the counsellor. How much to discuss with the child prior to the HIV test will be determined by the childs developmental stage and understanding of illness and HIV/AIDS and the care-takers readiness to give information. We mainly observe: - In case of young children, below 6 years, there will generally be no need to explain the HIV test prior to getting the results. Keeping easy communication on taking blood (based on pictures or symbolic toys), can be enough. The accent will be put on making the child feel at ease as much as possible. - In case of children between 6 and 12 years, all options are possible, from simple discussion around health, taking blood, germs, until clear explanation about HIV testing. - In case of adolescents, above 12 years, everything should be openly discussed : why he has been oriented here, assess knowledge and perception about HIV/Aids and contamination modes, clarify misconceptions, provide opportunities for questions, explain the testing procedure and possible results, assess emotional situation, prepare for getting possible positive result, reassure on possible treatment, being realistic and objective, guarantee MSF support, The maturity of the child & the readiness of the care-takers will determine how far to go into the HIV counselling with the child. Specific cases: Adolescents coming on their own This will be a compromise between country rule (no individual test under the age of ) and children's rights (to know about themselves). The project should establish its own code of conduct for analysing such cases. Some recommendations: - In any case, the adolescent should always get the pre-test counselling! It is necessary to inform him, and to hear why he came alone. You'll handle the same topics as mentioned above but add specific discussion about the reasons for coming alone.
11
The concepts of progressive and total disclosure are presented in the next chapter
39
Try to find out if it is possible for him to come back with a care-taker or with another adult reliable person, or with a buddy. If yes, a second pre-test counselling can be arranged the next day, with that extra person. If that seems impossible, or if there is a high risk to never see the adolescent coming back, try to make sure he will come back with any other reliable adult for the post-test counselling. In any case, the adolescent shouldn't be alone when hearing a positive result!
Specific cases: sexual abuse If the child has been brought or presented himself within 72 hours, don't forget to follow the Postexposure-prophylaxis (PEP) procedure! The general protocol for addressing rape survivors includes necessity to handle HIV topic in the first session. More detailed HIV counselling can be done in the next sessions. 4.2.3 Post-test counselling Key issues The post-test counselling should always be individual It should always be done by the same counsellor who did the pre-test counselling. When a child is tested HIV positive, it is necessary to encourage the parents, brothers and sisters for testing.
Counsellor and care-taker Care-takers may react in very different ways upon learning of their childs positive HIV status, depending on their own situation: personal beliefs, knowledge of the disease, cause of the child infection, knowledge and acceptance of their own status, Before discussing how to deal with the child, it is necessary to give some time and assist the care-taker to deal with his own emotions. This part of the counselling should include: 1. Classical steps of HIV counselling with adults : welcoming, discussing about waiting period and actual feelings of the care-taker, see if the care-taker has some more questions concerning pre-test, did he speak about the testing to somebody, confirm that the care-taker is ready to get the result, give the result in a brief clear manner, assure immediate emotional support in case of positive result, assess comprehension of the result, in case of negative result : explain window period, if positive result : discuss immediate concerns of the caretaker, discuss modalities of treatment and guarantee MSF support 2. Based on pre-test counselling, discuss again how much information can be given to the child & how to announce a positive result (immediate total disclosure or progressive disclosure). 3. Ensure the care-taker had enough time to ventilate emotions and get first support before calling the child. As most of them will be in situation of shock, denial or emotional difficulties, you won't reach ideal situation but the care-taker should at least feel a bit calm not to be put in uncomfortable position towards the child. Counsellor, care-taker, and child In case of adolescents, if the pre-test counselling has determined that the teenager should hear the result immediately, then the post-test counselling will be done directly with the care-taker and the adolescent.
40
In other cases, after the result was announced to the care-taker alone, the child will then be asked to join his care-taker and the counsellor How much to discuss with the child will be determined by the discussion you had during pretest and the decision you just made with the care-taker during the first part of the post-test counselling. We mainly observe: o In case of young children, below 6 years, the diagnosis will not be announced to the child. This doesn't mean you shouldn't communicate with him! Discuss basic things: that blood we took, some people at the lab looked at it, now you will go and see the doctor, . Engage friendly discussion about going to the doctor. The main idea is to make the child feel comfortable and include him in the discussion. He shouldn't feel excluded. Don't forget he will feel the sadness or other emotional reaction of his care-taker. o In case of children between 6 and 12 years, all options are possible from starting progressive disclosure to immediate total disclosure. o In case of adolescents, above 12 years, it is recommended to proceed immediately with total disclosure. Also include specific discussion on emotional situation, transmission modes, partnership and use of condoms, adolescent group sessions, Use counselling cards as visual support when explaining to the child. See chapter "How to disclose" for possible contents of disclosure. E.g. just explaining a germ in your blood or going to body's defence or naming HIV/Aids. The next steps should then be organised: medical exams, health advice, planning of visits to the clinic, social support,
4.2.4 Follow-up counselling Even if the child does not need to begin ARV treatment immediately, it is important to maintain regular contact with the child and the care-takers. This will allow: - To monitor the childs health - To start health education and progressive disclosure with the child - To provide counselling for any problem the child may encounter: questions, stigma, fears, - To know the child better and to orient him to a support group - To have the child and care-taker better prepared when the day will come for ART preparation Individual follow-up counselling can be done with the care-taker alone, with the child alone, or with both together depending on the situation.
4.3 Disclosure
This section will provide a brief overview of disclosure but greater detail and depth about disclosure can be found in: - Annex 5 : Disclosure of HIV diagnosis to children, - Recommendations regarding disclosure of HIV status to children under ARV in MSF projects, MSFF, 2005 - a large number of documents about disclosure to children, provided on the DVD-rom (annex 1).
41
4.3.1 What is disclosure? "Disclosure" is the process by which the children learn about their HIV/Aids status. When working with children under 12, the recommendation is to go for progressive disclosure: a gradual process by which, along a period of time, a child learns about health, having an (unnamed) infection, treatment, and finally hears his HIV status (total disclosure). Progressive disclosure is a compromise between : - the right of the child to know about himself, and be responsible for his health - the right of the child to be protected and under the responsibility of a care-taker. - and the fact that the child, and his care-takers, might need time to be ready for full disclosure. In this process, partial disclosure gives information about what is happening in the body, without naming the disease. It is a way to start the dialogue with the child. It is very possible to initiate a partially disclosed child on ART. Full or total disclosure declares the name of the virus and the disease, and details all information. This leads to talking about transmission mode and therefore the history of the family. It makes the child more autonomous and allows him to confront the difficulties linked to his condition. 4.3.2 Why do disclosure? Advantages of (progressive) disclosure - The child can speak openly about his feelings, his suffering, his anxiety, ... Children who may express themselves have a higher self-esteem, develop better capacity to cope with difficult situations, and are less depressive. - The care-takers feel better, as they are no longer living with the secret. They feel more capable to deal with the childs expressions and reactions. - The care-taker keeps his image of the adult, who is right and can be trusted. - The child feels supported and protected by the family. - It helps to build a constructive relationship, in which the care-taker can help the child become strong and learn to live with the disease. - It allows giving appropriate information to the child, adapted to his age. The child will not remain with wrong and dangerous fantasies. - The explanations will help him to understand whats going on around him and in himself. - The child is conscious about the importance of medical care, adherence to the treatment, hygiene, and of protecting himself and the others. He feels more responsible and we can expect from him responsibility and involvement. - Adolescents should be informed so that they can assist in their care and reduce the risk of HIV transmission through unprotected sex. - The child feels respected. - On an ethical base, the child has the right to be recognised and involved in his own health care. - The project staff will maintain a relation of trust with the child, which is essential for adherence. Risks of late or non-disclosure - The child will guess that there is a secret regarding his illness, this can lead him to creating his own explanation for the illness. - The child's creative imaginary can be worse than reality! - They may experience anxiety, fear and depression about death and dying, without any support - Confusion and uncertainty about their own health can have a negative impact on childrens self esteem. - Children can feel different and isolated. - Children can learn inaccurate or incomplete information about HIV/AIDS from news media, community members or at school
The involuntary and not supported discovering of his status has worse consequences than a well-organised progressive disclosure. When they later find out that they have HIV, it may be difficult to accept they have been lied all this time All these factors can lead to emotional troubles (anxiety, depression, agressivity, ), troubles at school (lack of concentration, school missing, ), relational and social disturbances.
NEVER LIE TO THE CHILD! Even when the child is very young, try to explain things in a simplified way. Lying always brings long term damages to the care-taker-child relation.
4.3.3 Who should disclose? The disclosure process should be conducted by someone whom the child trusts and respects. Usually, this will be the care-taker. Counsellors should help the care-taker feel more comfortable about the disclosure process by giving relevant information, answering questions, providing psychosocial support and/or practicing disclosure through role plays. In instances where the care-taker is not comfortable or where the child is not close to any family members, then a trusted health professional (doctor, nurse or counsellor) should participate in the process. Counsellors can also directly assist in the disclosure process by speaking with the child about HIV. Ongoing counselling is necessary to help the care-taker understand the importance of disclosure and to support children through its various stages. Ideally, disclosure takes place in a supportive environment with collaboration and cooperation between care-takers and counsellors. While some care-takers may not want their adolescent to be disclosed about their HIV status, counsellors should inform them that they will truthfully answer any questions the adolescent may have. At this stage, keeping the secret has too many negative consequences on his treatment and emotional wellbeing. Total disclosure is then unavoidable. 4.3.4 When to disclose? Disclosure is a highly individualized process requiring consideration of many factors including age, developmental stage, family dynamics, care-taker readiness and clinical situation. Follow the rhythm of the child: a progressive disclosure started at an early age is ideal. It should at least start when the child starts asking questions about himself, his health, his regular clinic visits. The explanations given should be adapted to his cognitive development and his feelings. Follow the rhythm of the care-takers: they may have a tendency to disclose later than what healthcare professionals and counsellors feel adequate. If the gap is not too big, the counsellors should follow the care-takers proposed timing. If the care-takers delay too much, some work has to be conducted with them to convince them of disclosing. The moment of total disclosure should occur between the ages of 6 - 12 years. Avoid using the words HIV/Aids in front of a child under 6 years. He might not be able to keep the secret and understand when to speak about it and when not.
43
If children of 10 years dont know about their status, start working with the care-takers to insist on progressive disclosure to make sure he will have total disclosure before 12. Dont wait until the child is adolescent: learning about HIV/Aids after the age of 12 can bring disastrous consequences. Waiting for the child to be teenager, possibly in crisis, may bring difficult reactions from his part. A secret kept too long might also make him angry at his caretakers, or reject the treatment. In the case of critically ill children, issues related to death and dying may be more appropriate to address than issues of disclosure.
START THE DISCLOSURE PROCESS AS EARLY AS POSSIBLE - At the latest when the child starts asking questions - The longer we wait, the bigger the risk to lose the childs trust - The more the secret lasts, the more difficult it will be to break the silence - Always achieve total disclosure before adolescence.
4.3.5 How to disclose? Partial disclosure starts with simple explanations about illness and how to stay healthy. It is important to build knowledge about HIV/AIDS little by little. As children mature, they can be fully informed about their diagnosis and prognosis. Care-takers and counsellors should regularly assess how much the child understands as well as what he thinks and feels in order to correct misconceptions and support his emotions. Children often know more than we think they know! Below is a simple disclosure plan12: o o o o o o o o o o o o o o
12
Information about hygiene Information about being sick Information about going to the doctor Information about the body Information about blood circulation Information about germs and getting sick Information about our defences (immune system) Information about immune system needing assistance from drugs Information about the specific virus the child has Naming the virus and the illness : HIV / Aids Discuss with the child with whom the secret should be shared Information about CD4 count (and/or viral load if available) Information about transmission & non-transmission of HIV/Aids Information about sexual relations and condom use
Partial disclosure
Full/Total disclosure
Based on Dr. A. Peltier (2007) Annonce du diagnostic d'infection par le VIH/Sida chez l'enfant : un enjeu mejeur de l'ducation thrapeutique. In Dveloppement et Sant, n187
44
Key issues Always start by evaluating the childs knowledge and understanding of his condition, the disease, his coming to the clinic, drug taking. Gradually move from basic explanations, to more detailed information. Usually, the child himself will guide the process, by asking questions. Don't forget to monitor post-disclosure coping: after the disclosure is done, the dialogue must be continued, and the child needs to receive a continuous support, from the care-takers and the counsellors. A significant part of the disclosure process will entail supporting how children and adolescents cope with their illness: - emotional coping, main concerns of the child - child's behaviour - situation in the family - school-related issues - relations with peers - how to cope with the secret, and disclosure to peers 4.3.6 Barriers to disclosure: why care-takers are reluctant to disclose? The care-takers often dont see the need or benefit of speaking about it, especially at the first stages on the infection, if the child has few symptoms They believe the child is too young to understand They believe that if the child doesnt ask questions, it means he doesnt realise whats going on, or he doesnt want to know They desire to protect the child for as long as possible They want to protect the child from sadness, anxiety, depression, fear (also fear that the caretaker will die and abandon him) They fear it may have a negative impact on the childs will to live They fear that the child wont keep the secret and will disclose (voluntary or not) with possible consequences: stigma, social exclusion. They are in denial: the child represents hope and future, non-disclosure keeps the illness away. They have unresolved trauma from the death of one or more family members from AIDS. They feel isolated and lack support. They have difficulties in finding the right words / communication. They are uneasy speaking about difficult topics such as sex, death, etc.
When the care-taker is HIV infected: They deny confronting their own illness They feel guilty about transmission. They might ask the counsellor to lie about the way the child was infected. They fear that the child will hate, blame or reject them, not love them anymore Disclosing his status to the child would force them to disclose also their own status They fear the child reaction on knowing the care-taker status. The child might believe the caretaker will die, and let him abandoned. Never judge the care-takers If they dont want to disclose, try to help them understand the advantages of progressive disclosure.
4.4 Initiation to ART

When the time comes, the counsellors have to prepare the child and the care-taker for a lifelong ARV treatment. With young children, maintaining good treatment adherence will be the responsibility of the care-taker. He needs to understand the potential complexities in a drug regimen and assist the child with the drug administration. Older children/adolescents should feel responsible for managing their own health and understand the requisite aspects of treatment. 4.4.1 ART preparation ART preparation means the preparatory work conducted with the child and the care-taker, prior to giving the first ARV treatment. It includes both an educational part (treatment literacy and practical aspects linked to ART) and a counselling part (emotional and social preparation). This will be achieved through several individual sessions (minimum 3) and a group session (at least one) with the child and the care-taker. ART preparation must involve both the child & the care-taker Since ART initiation is rarely an emergency, it is crucial that sufficient time is spent on ensuring that children and care-takers fully understand the requirements and implications of treatment and are willing to proceed. The actual start of the treatment will come after and evaluation confirms that both the child and the care-taker are ready. If not, supplementary group and individual counselling sessions should be added! Treatment Literacy and practical aspects Children and care-takers should be provided with relevant education on the disease and the treatment, and understand what it means to commit to a lifetime treatment. This education should start from the knowledge the child and the care-taker already have about HIV/Aids and treatment, and the childs level of disclosure. The counsellor will correct misconceptions and complete the information. Staff should prepare in advance a schedule so that information is provided in a logical progression and not too much information is given all at once. Topics to discuss: - How does the clinic work? Who is who, who does what? - What is HIV/AIDS? How is it transmitted? - How does HIV act on the CD4s? - What ARVs do (suppress HIV) and do NOT do (cure AIDS) - Mechanism of ARV action (CD4 counts and viral loads) - Importance of treatment adherence (daily and lifelong) + what happens if lack of adherence - Drug resistance - Potential side effects / management of side effects - Importance of nutrition, exercise, hygiene and sanitation - Regular follow up - Discuss a daily schedule that would integrate activities and meals, with the taking of the medication. Importance of routines: fit the medication schedule into existing life routines. - How to recognise the drugs? - How to remember which drug to take at what time ?
How to take/administer the drugs : syringes, measured spoons, cutting and crushing tablets, with or without food, mixed with beverage, mixed together, sequencing, ... ? What to do if the child vomited the pills, what if you realise later in the day that you forgot it, ... Explanation of the safety-stock FAQ (i.e. what to do when sleeping over at friends home, going on a trip, holidays, Ramadan,...)
Healthcare staff may want to help children and care-takers practice treatment adherence by using cotrimoxazole prophylaxis for two weeks prior to ART initiation as a trial run to identify any potential problems. This will allow the healthcare staff and families to work together to troubleshoot treatment adherence issues prior to ARV initiation and determine when the children and care-takers are ready to begin ART. Emotional and social aspects Besides assuring good understanding of the disease and the treatment, the counsellor should assess the child and the care-takers acceptance and readiness to start the treatment, and prepare them for it. Anticipating the possible difficulties which could arise concerning the treatment, and foresee possible solutions is one of the keys for successful adherence! Topics to discuss: - Childs situation concerning disclosure - General habits, reactions of the child towards health and drugs ? - General characteristics and personality of the child - Beliefs and perceptions of care-takers towards modern medicine and drugs ? (quality, toxicity, ...) - Thoughts and beliefs concerning HIV/Aids ? - Is the care-taker ready to give everyday at the same time the drugs to the child, check on his health, take him to the hospital if necessary ? - What is the family social situation. Risks of people finding out, and stigma ? - Care-takers and children should be encouraged to voice any questions and concerns they may have during this time. - If possible, families should be assessed through home visits for their readiness to begin treatment. Potential barriers or constraints to treatment adherence should be identified so that counsellors can support the families in finding viable solutions. Some barriers can include family related issues, disclosure, stigma and discrimination, living conditions, attitudes or beliefs, behavioural issues,... Before starting ART, be sure that both the child and the care-taker are ready for it, both on educational and emotional side.
47
4.4.2 ART initiation This is the day when the first drugs will be taken, and the following first weeks. - After completing ART preparation, an individual counselling session should assess and confirm whether the child and the care-taker are ready to start ARVs. - Key elements to a treatment and successful adherence include: Good understanding of ARVs and childs drug regimen Ability to administer drugs (i.e. syringes, spoons, syrups, tablets, crushed/whole, with or without food, timing, etc.) Identified solutions to potential barriers to adherence Good relationship with counsellor/healthcare staff - The first quantity of drugs will be given - The counsellor explains to the care-taker and the child how the drug has to be given. The treatment is provided in the easiest possible way : if half-pills must be taken, they have to be provided already cut, syringes for syrop must be labelled with the name of the drug, and a tape showing how far the syringe should be filled. - The counsellor discusses with the child and the care-taker when will be the best moments of the day for taking the drugs. This might be difficult if the child is also under TB treatment, as the TB drugs should be taken on an empty stomach (half hour before food, or 2 hours after), while ARVs are preferably taken with food. - The children and care-takers should be asked to return to the clinic 14 days after ART initiation to assess the childrens tolerance and adherence to treatment. If the child is doing well, then he is asked to return for a follow up visit after another two weeks. 4.4.3 Tools and techniques facilitating the ART preparation and initiation13 Counselling Cards, flipcharts, including educational images (such as body and blood, the immune system, ...) and images facilitating emotional expression. This is the basic tool for any counselling. Fairy-tales can give basic information to the children and their care-takers about immune system, taking medicines, importance of adherence and caring of ones health. Most of them dont use the terms Aids and are adapted for both disclosed and non-disclosed children. Prescription reminder illustrating times, drugs, and doses of medications Pill-boxes : preferably small and discrete, try to find attractive ones Pill-path: create nice pill-paths that have to be coloured by the child whenever he takes his drugs. It will help the child to follow the daily pill taking and the counsellor to monitor adherence. Stickers who can be fixed on a weekly calendar help them to visualize the medicines they took and if they forgot them. Those are specially useful during the first weeks of the treatment in order to install a daily routine. Small rewards may be used as incentives, when taking the first drugs, or in case of good adherence, at the first follow-up session, or in case of important CD4 increase after one year. But this should remain exceptional, and not systematic. The child should not expect it, as he shouldnt be encouraged to adhere through a reward, nor should he feel punished when not receiving one. The most important is to keep positive reinforcement attitudes towards the child. Adherence reminders : alarm clock, TV program, radio news, cell phone alarm Diaries can be helpful, especially for educated teenagers
13
All these tools are explained in the chapter Support tools and activities
48
4.5 Adherence and follow-up counselling

Once the ARV treatment is started, the child and the care-taker will come regularly to the clinic for medical check, drugs re-fill and adherence counselling. The clinic visits should be scheduled according to the children and care-takers convenience to facilitate good attendance. On the medical side, CD4 count, viral load and other exams will be done. Adherence counselling is an ongoing process by which counsellors support children and their families in maintaining good adherence to treatment, i.e. understanding the treatment, getting aware of importance of treatment, and deciding to take the medication prescribed by the doctor. Counsellors help to identify challenges to adherence and work with the children and their families to identify strategies to overcome the barriers. Follow-up counselling will address any other matter of worry raised by the child and/or the caretaker, in continuation of the work started before ART. A child in stable conditions with good adherence may decrease his counselling visits by coming every 2-3 months rather than on a monthly basis. Be aware, a good adherence is never a guaranteed permanent success! 4.5.1 Assessing adherence Assessing adherence has three aims: 1) conclude if the child presents a good adherence or not 2) encourage positive adherence 3) find out the reasons in case of adherence difficulties Adherence may be assessed through several ways: - health condition reported by the doctor, possibly mentionning a suspicion of poor adherence - self-report by the child - report by the care-taker - presenting the pill pathway, adherence books, or calendar, filled by the child every time he took the drugs - counting the remaining pills Be aware : if the child feels it more as a control than a support, he might easily cheat, and it wont give reliable and useful results ! The most important is to involve the child through these tools. During each counselling session, the counsellor should try to assess the childs treatment adherence by asking a number of questions such as: - Your mum told me you can take you drugs by yourself? Thats great! Can you tell when you are taking them? (positive reinforcement) - Some other children tell me taking drugs is not always easy. Can you give me an example of when it was difficult for you? (allow disclosure of difficulties with adherence); - Tell me about the last three days. What have you done? Do you remember about when you took the drugs? (three days recall) - I know sometimes in the beginning this medicines give some nausea/other side effect: how has it been with you? (identify side effects) - What do you do to remember that you have to take the medicine? (Encourage positive linking strategies).
49
- The counsellor should ask how the child feels about taking his medicines in terms of how the medicines affect them physically, emotionally and socially. Giving the child the opportunity to express any frustrations or difficulties and helping him work through his issues may help offset future problems. - Sometimes the aging grandmother thinks the child is taking his medicines because it disappears soon after she prepares it for him. However, it could be that the child merely takes the pills and throws them away when she is not looking. - Counsellors must stress the importance in accurately reporting the childs adherence. Child and care-taker must feel that they will not be scolded or judged for telling the truth or that they will disappoint the healthcare staff. The child shouldnt consider it as passing a school exam! Counsellors can encourage and praise the child and care-taker when adherence is good but should not scold them when it is bad as this will only cause them to be less truthful in the future. Instead, counsellors should help them work through their adherence challenges. 4.5.2 Adherence difficulties Related to the care-taker - A frequent problem occurs when the child has only one care-taker accompanying his treatment : if the care-taker travels, gets sick, or dies, the child is not followed anymore, and becomes a defaulter. - Babies and young children are not only dependent from the care-takers to remind them taking the pills, and to respect the appointments at the hospital, but they are also influenced by the attitudes and perceptions of the care-takers towards the illness and the treatment. Valueconflicts about the drugs are particularly riskful in our programs. - Way of coping with side-effects - Practical aspects: the drug-schedule doesnt always fit in the care-takers daily life rhythm, having to hide the drugs at home, changes in routines, ... - Emotional situation of the care-taker: coping with guilt, fear, ... - Professional and socio-economical situation: illiteracy, problems to pay transport to the hospital, frequent travellers, ... - Lack of a stable motivated care-taker assisting the child taking the treatment (more frequently observed when care-takers are not the parents) - The care-taker believes the health improvement of the child is due to the traditional treatment - Etc Related to the child - Difficulties related to drugs & practical aspects linked to the treatment: to swallow big pills, bad taste, ... - Total disclosure not yet completed and difficulties to responsibilize the child - Wrong perception and acceptance of the illness and of the treatment. It may happen that the child was started on ARV with insufficient preparation, especially with adolescents. It is preferable to take the necessary time for a proper ARV preparation, in order to avoid serious adherence problems - Emotional situation : child being in autonomy phases and refusing everything, increasing sensitivity of adolescents, excess of stress, loneliness, depression, ... - Social situation : orphans lacking support, ill-treated children, scholar failure, ... - Way of coping with side-effects : children who are not sick, not disclosed, and dont understand why they should take drugs.
50
Related to the project staff, and the organisation of care General quality of the services proposed: welcoming the children and care-takers, child-friendly environment and attitude, good contacts between project staff and the children/care-takers, quality care, education and emotional support, etc (See all the recommendations of the present guideline.) 4.5.3 Finding solutions Dont suggest all kinds of solutions without clear assessment of the reason for adherence difficulties! You might introduce nice tools but not adapted to the specific problem encountered! Tools will be chosen depending of the encountered difficulty: understanding, technical problem, emotional difficulty, social problem, ... Some possible solutions will be: - Make sure to have a second care-taker accompanying the childs treatment, and ready to replace the first one when necessary. - Appropriate education: Health staff often thinks non-adherence is linked to bad understanding of the given information and just restart the same education session as before. Improper understanding can be the reason of the problem at the beginning, but shouldnt last if the child gets regular adherence sessions. More often, the child and care-taker know how to take but they dont perceive the importance of taking the pills. The accent should be put more on What happens on short and long term when you dont take ARVS, rather than just You should take them like this and at this time. The objective is to reach awareness and not just remembering a message by heart. - Evolve in disclosure progress (partially totally): assess the impact of the secret in case of nondisclosure and possible necessity of disclosure. If you feel the child doesnt show enough concern, doesnt understand the reason of taking drugs, shows angriness and refuses to take the drugs, ... it may be necessary to evolve in the disclosure process - Review the use of routines: help the care-taker and the child to find the easiest ways regarding their specific situation. What is the child doing or what happens every day around 8 in the morning and 20 in the evening (eating, brushing teeth, hearing the churches sound, father leaves home, ...) - Suggest some tools: Use pill-path, visual reminder tools, alarm clock, pill-boxes for both practical aspects and involvement of the child. - If necessary, show how to take the drugs concretely (with placebo). Help parents to normalise procedure of taking drugs. Give them advice on how to reinforce and applaud the child positively when taking the drugs well. - Emotional support: this is like any other counselling. Use adequate attitudes, communication methods, toys, games, body-language in order to review the beliefs of the care-takers and/or child about HIV/Aids and treatment, help them coping with the disease, ...
51
4.5.4 Follow-up counselling Follow up counselling for children and care-takers during subsequent follow up visits focuses on both health-related and non-health related issues. A counselling session can address any issues related to treatment and adherence, but it should also explore other issues affecting the children and care-takers. Topics to discuss include emotional issues, adolescence, stigma and discrimination, relationships, future planning for adolescents, transition to adulthood, bereavement, loss, death and dying. Diet, nutrition and management of side effects can also be discussed as appropriate. Referrals can be made for necessary social support services.
4.6 Social support and community link

All HIV/AIDS project have to worry about what happens to the patient after he leaves the clinic. What are his conditions of living? How does he feel in his family, in his community? Does he suffer stigma? Does he take his drugs well? Does he have someone to talk to? Does he have other social problems? How shall we find him if he misses the next appointment? In order to follow these questions, the Patient Support team should include people in charge of Social Support and Community Link. In practice, each project has its own strategy of organising this. This chapter reviews a few key elements in the organisation of this support for all patients, and points out the specific aspects related to children. Possible Social Problems encountered by the patients: - Lack of resources, food, shelter, money, clothes, blankets, ... - Lack of transport/money for coming to the consultation - Alcoholism, drugs, violence, ... - Stigma, or fear of stigma, in the family or community, difficulties to live with the secret - Having no one to talk to about his health problems All these social problems can affect the patients ability to adhere to his treatment Specific social problems encountered with children: - No access to education, - Child rights abuse: sexual abuse, forced labour, stealing of inherited properties, ... - No permanent care-taker: the child might be an orphan, staying a bit in one family, then with another. There is no stable care-taker following his medical condition, taking him to the clinic, and helping him to follow the treatment. - The child has to come to the clinic and miss school on that day, which may bring classmates to guess his status, so he prefers to miss the consultation. - The child might be an orphan, responsible to care for younger brothers and sisters. Proposing good social support and community follow-up is an essential element of an HIV project, allowing a good adherence, and a limited number of defaulters.
52
Objectives of the social work and community follow-up - Help the patient solve his social problems, in order to improve his adherence and his quality of life. - Provide social workers to attend the patients, in order to free the counsellors from hearing the social matters of the patient. When there is no social worker, the patient expresses his social problems to the medical staff and the counsellors, who find themselves overloaded with social demands, for which they are not prepared, have nothing to propose, and everyone is frustrated. - Limit the number of defaulters, by a patient follow-up inside the community - For those who are actually lost to follow-up, have an efficient system of defaulter tracing, through volunteers within the Community. Staff in charge of the social work The way social work is organised differs very much from one project to the other. A few general recommendations: The social consultation at the clinic should preferably not be performed by the counsellors. They often have too much work, and it is easier for them to refer the patient having social demands to the social consultation next door. (If there is no social worker in the clinic, then the social consultation should be done by the counsellors. But in this case, they must foresee to spend more time with each patient, which is always difficult.) The social workers are usually staff employed by the project. They may exceptionally be trained volunteers or patients, from a partner organisation. The community follow-up could be performed by staff employed by the project. It is however often conducted by volunteers or patients from an external partner organisation. Partner Organisations may be : Community Based Organisation, Group of Volunteers gathered by the project, a Patient Association, individual Expert Patients, an existing network of volunteers working for another NGO or the government, etc The HIV/Aids project should establish a clear collaboration with each partner organisation, stating the engagements from both parts.
The social services are provided under 2 forms: 1) Social consultation at the clinic. Whenever they come to the clinic, the child and the care-taker have the possibility to meet a social worker, discuss his social problems, possibly receive some assistance, and be refered to partner organisations or associations. This requires trained social workers, and a private room, similar as for the counselling. The social consultation for children and their care-taker will include the following activities: - For a baby less than 18 months, when doing the DNA-PCR test, it is necessary to have the caretaker see the social worker on the same day. He will make a (rapid) social file, in order to at least be able to trace the care-taker, in case he does not come for the result. - For each child-patient, the social worker should try and make sure that the child is under continuous care of (at least) one care-taker, who accompanies his treatment. If a child is brought to the clinic alone, or with no care-taker clearly in charge, the social worker must make an enquiry on the child social situation, and try to find a care-taker. If necessary, the social worker will go with the child to visit his community.
53
- After announcing an HIV positive result to the care-taker, the counsellor should refer him to the social consultation. The social worker will interview the care-taker and the child, assess their social situation (address, family, food, shelter, income, health,) and their needs, and fill the social situation of the child. He will explain to the care-taker the social support that he may receive (from MSF and from other organisations) and how does the defaulter tracing function. If the project has a community follow-up component, he will explain to the care-taker, the possibility to have contact with a volunteer in the community: Mr Smith lives near your place, he is a member of our network of volunteers following patients, would you like him to come and pay you a visit ? You may also go and see him whenever you feel like it. - All along the treatment, every time the child and the care-taker come to the clinic, they should be offered the possibility to go to the social consultation if they want to. On top of that, ideally, a systematic consultation should take place every 3 or 6 months, so the social worker can be updated on the familys situation. The social worker will update continuously the social file, and provide some assistance (see below). - It may be very difficult for a social worker to talk to a child and put him at ease, in order to have him express his feelings and problems. As members of the Patient Support team, the social workers should also receive specific training on working with children. 2) Social follow-up in the community. Social workers or partners associations/volunteers have contacts with the child and the care-taker at home, and in the community. NB: This is also sometimes called Community Outreach, or Community Dynamics, or Home Based Care. But the term Home Based Care should be avoided, as it creates confusion with the activities conducted in times before ART, which were providing palliative care to patients dying at home. The community follow-up consists of Patient Support staff (social workers, counsellors, educators, community volunteers, activists, ) linking with the patient at home and in their community. The staff regularly visits some patient at home, follows their social situation, and all treatment related matters (coming to the clinic, taking drugs, ...). He may organise Support Groups, where the patients exchange experiences, feelings, problems, and help each other on practical problems. He may organise common transport to the clinic, or inform everyone on the day where the mobile nurse is coming, etc . He may coordinate external actions: advocacy, public awareness, prevention campaign, etc When following a child, he will see how is the child position in the family (no double standards among children), and at school, and look for any particular problem of the child. The social services proposed to the patient Through the social consultation, and the community follow-up, the following services are provided to the patient: Continuous assessment and follow-up of the patient social situation The situation of the patient is updated in his social file. When necessary, a specific case management will give a temporary closer follow-up for patients having a high risk of defaulting or dying.
54
Networking The social worker assists the patient in finding social support from other actors : local authorities, churches, NGOs, Community Based Organisations, etc ... In order to provide this service, MSF needs to know all the social actors in the area. This can be achieved by conducting a mapping of social actors in the area. Defaulter tracing The project identifies the patients who have missed their appointment at the clinic. The names are transmitted to the persons in charge of community follow-up, who organize someone to go and look for the missing patients, see what is happening, and help finding solutions. The patient or the caretaker must have been informed of this, and agree with a possible visit at home. Organising a good social support and community follow-up is actually doing Defaulter Prevention !!! Cash for transport Lack of transport is a major cause of patient defaulting in rural areas. The social services can propose to pay for the patient transports related to his treatment (coming to the clinic or going for extra tests). Direct in kind support Mosquito nets, blankets, school purchases, food, etc (NB: nutritional help should be considered as part of the medical treatment, and not of social support). As a general rule, MSF Projects should not engage in such distributions of goods in kind, in order to concentrate on medical care. Whenever other organisations may do it, MSF should rather connect the patients with these organisations. Only in cases where there is no other actor, MSF might consider making some in kind donations.
4.7 Support tools and activities

Patient Support for HIV infected children and their care-takers require a number of specific tools and activities. This section will present a large quantity of such support tools and activities. Some tools are meant for children only, some are for the care-takers, and some can be used with both. Some tools or activities are useful for education. Others allow the children to express their feelings. Some will help the child develop life skills, and others may be only for fun. Most support tools and activities will actually provide a combination of these different aspects. On the DVD-rom (annex 1), the section Tools for Patients contains the files of a very large number of tools and activities, classified in the same way as the chapters below. Some of these tools may be used as such in your project, while others should inspire you for developing your own local version. General recommendations on preparing tools and activities for your project: - A project is not obliged to implement all the tools and activities presented here! - Each project should establish its own set of tools, and a strategy for its use, corresponding to its specific situation. - A child gets easily bored if you use the same material over and over again, therefore you will need to develop many simple tools and diversify. - For a proper understanding, make sure that all the treatment literacy tools have the same graphic presentation (shape and colour) of the 5 main characters: the common viruses, the CD4s, the HIV virus, the ARVs, and the resistant HIV.
Make sure to use graphic images (of viruses, CD4, ) which are understandable for the country you are working in. It can be interesting to request advice on this from school teachers, or other children specialists in the country. Each tool should be conceived for a certain class of age. Some tools will be valid for all ages. Some tools and activities are for use within the HIV/Aids project itself (e.g. a book to explain the treatment). Others are going beyond the scope of activities of the clinic (e.g. taking all the children for a grand day out). When possible, such side activities should be developed with partner organisations (patient association, groups of volunteers, Community Based Organisation, ...)
4.7.1 Counselling cards / Flipcharts This is the first tool to have in your project! One in each counselling room! A set of counselling cards is a set of 10 to 15 images, used as a support for all steps of the childpatient education: explain the disease, work on progressive disclosure, ART preparation, etc The main objective is education, but the tool also allows some emotional support. It can be used in individual sessions (smaller images), or in Group sessions (bigger images). It can be used by medical and non-medical staff. All doctors, nurses and counsellors offices should have the same set of counselling cards.
Different presentation of the counselling cards: Individual flying cards: A number of separate images on plastified carton / strong paper, approximate size A4. On one side of the card is the image, to show to the child. On the other side are the notes for the counsellor on how to work with that image. These notes are not for reading to the child, but to assist the staff and maintain a similar approach by all staff. Individual cards have the advantage of rapidly finding and using only the ones you need. Individual Flipcharts: The same images but bound together. In this case, the notes for the staff are printed on the back of the previous card: while the child looks at image 3, the staffs see the notes of image 3, printed on the back of image 2. Flipcharts have the advantage that no cards will be lost, and you will always have the complete set at hand.
56
Big Flipcharts for groups : The same as the individual flipchart, but bigger, to be used in group. These are usually printed on cloth or paper. The notes for the staff are not printed on the back.
Content of the counselling cards The following topics should be presented on the cards14: 1. General image to introduce your counselling, to make the child feel at ease (e.g. healthy children playing, eating, washing, children making sport, or another nice picture, ) 2. The human body and visualisation of blood circulation in the human body (1 or 2 cards) 3. Blood and its content 4. The immune system 5. The germ theory, with common viruses 6. The HIV virus, and its impact on the immune system 7. The ways of transmission of HIV/Aids (possibly including image about condom use, for teenagers) 8. Ways of non-transmission of HIV/Aids 9. The way ARV treatment works 10. How to take ARV treatment 11. The secondary effects of ART & how to react to them 12. A child and its family 13. Children at school (and/or playing on the street) 14. A picture representing two children telling a secret 15. A picture facilitating emotional expression (e.g. 20 monkeys in a tree, see below) Remarks: - Dont write the terms HIV/Aids on the images, so that the tool can be used as well for children who dont know their diagnosis yet. - Take graphic images of viruses and CD4 which are understandable for the country you are working, considering the local culture. (It can be interesting to request advice from local teachers). - Do not traumatise the children, with an HIV virus looking too terrible. It should be a mean character, but the child has to live with that animal in his body! The images explaining the treatment should show a neutralised virus, thanks to the drugs.
Based on Dr. A. Peltier (2007) Annonce du diagnostic d'infection par le VIH/Sida chez l'enfant : un enjeu majeur de l'ducation thrapeutique. In Dveloppement et Sant, n187
14
57
How to use the Counselling cards: - The counselling cards are a tool to facilitate your session with the child. - They may be used for gradually explaining the disease, the treatment, and work on progressive disclosure or total disclosure. - During the counselling, you dont need to use all the cards. Only use the ones that you need for addressing the topics of the day. - Do not make it a lesson, but rather a dialogue, asking the childs participation Examples of Counselling cards: The DVD-rom (annex 1) contains a large selection of counselling cards and flipcharts, coming from MSF projects as well as from other organisations. Some may be used as such, while others should be taken for inspiration, when preparing locally a set of cards adapted to the local culture. 4.7.2 Visual analog scales These are images showing characters in different situations and feeling different emotions. The counsellor asks the child to show which characters corresponds to his present mood. This helps the child to express himself easily. It can be created with pictograms, with faces or real pictured children, with puppets of faces or of animals, with numbers, ...
Such a tool can be used for the child to express: - pain : graduated images from no pain at all to very strong pain - sadness - happiness : from very sad to very happy - any other emotions or mood : angry, jealous, tired, - ART adherence of last month : from very bad to very good (not for precise statistics) These are very useful as well in medical consultation as in counselling The counsellor asks the child to show which characters corresponds to his present actual mood./ actual pain / adherence of last month This helps the child express himself easily. After a few times, the child gets easily used to it. If working with numbers, be aware to keep always the same logic and direction (e.g. from 0 to 10 : child should have understood well that 0 means not happy whilst 10 means very happy).
58
Monkey business The child is asked which monkey corresponds best to him. Once he picked one, we discuss what the monkey is doing, and how he feels. This allows to express all kinds of emotions.
4.7.3 Posters and leaflets
Posters are placed on a wall to deliver a message by itself, without any accompanying action. They can be placed on the walls of the clinic, in the counselling and testing rooms, in other wards, in public places, schools, etc Leaflets are brief documents distributed to a target population, and delivering a message by itself, without any accompanying action. Some examples of messages on posters and leaflets: - Health education posters: about the human body, hygiene, nutrition, - Sensitisation posters about HIV/Aids and children: "Aids can be tested and treated on children" NB: in a children HIV clinic, the use of posters mentioning HIV/Aids must be well controlled, considering the fact that there are children aged 8 or 10, who can read, and who dont know their status yet.
59
4.7.4 Books and booklets Different kind of books - Books may have all sorts of formats: picture books, fairy-tales, comic strips, photo-roman, novels, etc - Books may address many different topics, and they are very good tools for explanation. - Ideally, each book should indicate which age category it is meant for as well as the topics which are covered by the story. Selecting books for the project A project needs a book about health, disease and treatment, for each age category. They will support the education and counselling work, with the child and the care-taker. Such books are generally produced in the country (by MSF or another organisation), as they have to be in local language, and match the local cultural references. Each book should be conceived in consideration of its target audience, which should be mentioned on the first page of the book. They will be used in the counselling room, and some of them may be given to the patient. A project should consider having 3 basic books for Patient Support with children: 1) An illustrated explanation book for the care-taker of an infected baby/child under ART This book should give essential information on health, the disease, the treatment, and how to give it to the child. If possible, make different versions of the book for different age categories. The book may be given to the care-taker. Example: HIV: Prevenao da transmissao vertical e tratamento pediatrico, Unicef-Mozambique
2) An illustrated story book, for young children (approximately 3 to 10), under ART or not This book should tell about health, disease, treatment, and taking drugs. It is mostly for non disclosed children, so it should not name HIV/Aids. It will be used in the counselling sessions. Example: The Devimon Virus, MSF Thailand / Thanks ARVs, MSF Kenya / Merci les ARV, MSF Congo / Obrigado ARVs MSF Mozambique
60
3) An illustrated explanation book for teenagers, under ART or not This book should tell about health, disease, treatment, and possibly other teenagers concerns. It should name HIV/Aids, and may only be used with fully disclosed children. It may be used in the counselling sessions, the group sessions, and may be given to the teenager. Example: All you need to know about HIV/AIDS and ARVs, MSF Kenya / Le traitement aux ARV, MSF Congo / Our friends ARVs, MSF Liberia / O tratamento com ARV, MSF Mozambique
Further to these specific tools for children, projects should also have a book for adult patients, covering the same topics. This book for adult may also be used with some teenagers, from around the age of 16. It may be used in the counselling sessions, the group sessions, and may be given to the patient. Example : Tout pour la vie, MSF Congo Furthermore, a project also needs a set of other books, not country-specific, covering other topics. MSF has selected a set of books, addressing different topics, such as stigma, mourning, living with a secret, They are particularly useful for individual or group support, as introduction when you need to speak about a specific subject (secrets, death, health, ...)
It is important to also propose general books, not related to health or HIV, and available just for the fun of reading. Using the books - Always read the book yourself before using it with children! - Choose the most adequate book for the topic you want to work on with the child: partial or total disclosure, secret, exclusion, ... - When using a book about HIV/Aids, it is important to know how much is explained about the disease, and make sure this matches the current level of disclosure and knowledge of the child. - It might be necessary to adapt some words while reading (e.g. say becoming very sick instead of dying, or say the virus instead of HIV if the child doesnt know his diagnostic). - In some book the representation of the virus is frightening, or someone wants to kill one particular child. Try to avoid them or at least discuss about that with the child. The child should not feel afraid or consider being sick as a punishment.
61
In the children space - While they are in the children space, children can have free access to any kind of books adapted to their age category, for reading by themselves. Let them choose, dont impose only books about the illness. - Don't leave books that can't be read without counselling support e.g. specific books meant for mourning, for total disclosure, In individual session - The counsellor tells the story to the child, making sure that the child does follow. - He will make the child participate (what do you think will happen now ?, was this the right thing to do ?). - He will see what the child understands, and make sure the message has passed. - He can also use the opportunity to find out more about the child, his likes/dislikes, hopes/dreams, family lives, and relationships with peers, family members, etc In group sessions - If the book is too small or the number of children too high, print pictures separately on a A4 format and/or plastify them. You can show them or pass them around so the children can follow the story visually. - Never just read the book ! Dont consider the book as an activity on itself but as a tool to help you organising your activity. A book should be read to the children, and followed by games, questions, discussions, ... Example: you distribute roles (characters from the story) to the children before reading, so they will have to explain their role or make role-playing with it after the story. With bigger children you can include debates on prepared questions. You can ask the small ones to draw the hero of the book, or any part of the story, and ask them to explain their choice . At home - As we try to promote the care-taker involvement in the support to their child, it might be interesting to lend them books, for taking and reading at home with the child. However, in most cases, this is not recommended, as it might prove difficult to have enough books, organise their dispatch, and get them back! - If however books are lent to care-takers, it is necessary to make sure that the book will be properly used, i.e. accompanied by the necessary educational support. There could be a risk that the child misunderstands a story, or even understands his illness by himself, without the appropriate support. Select a book which is suitable for the child and his care-taker, and help the care-taker, by suggesting questions to discuss with the child. - Also make sure that the presence of the book in the house will not reveal the HIV infection of the child to people who should not be informed. 4.7.5 Treatment follow up tools These are tools used for assisting the child remember his treatment and take it properly. Adherence tools are especially useful at the beginning of ARV treatment, or with children presenting particular difficulties. The different tools are: - Medical calendar : the care-taker may be asked to indicate on the same page the particular events that occurred during that month (e.g. the child vomited on that day ) - The Pill-Box: the box has one space for each day, which makes it easy to follow whether the drug has been taken or not. Make sure to have a pill-box with the size convenient for all regimens.
Graphical prescription: pictures or drawing that explains the treatment graphically, as a reminder for the child and the care-taker.
The "Pill-Pathway" or pill follow-up sheet: an A4 page is printed with the drawing of a road, made of 30 rectangles. Each rectangle represents one day, and is cut in 2 squares, corresponding to mornings and evenings. The counsellor proposes the child to draw his house at one end of the road, and the clinic at the other end. Every time he takes his pill, the child makes a drawing in the corresponding square. This gives the child something to do daily, in order to remind him to take the drugs. And it allows following whether the drugs have been taken. When the whole road is full of drawings, it is time to go back to the clinic: the exact date may be written on the same document.
The Pill Poster. Combination of the Pill-Pathway and the Pill-Box: the drugs of each day are in small plastic bags, stapled on a big calendar. Alarm watch. The child uses a watch that will beep to remind him of taking the drugs. ART initiation book: specific workbook, used during the first two weeks of ARVs. It contains a pill-pathway, stories, and different fun activities. It does not use the term HIV. The children can take it at home. However, be careful if some family members are not aware of the child infection.
4.7.6 Activity sheets Activity sheets are light games meant for playing alone or by two: - Hidden images: an image appears, as the child colours the various parts of the picture with different colours, or connects dots or numbers. - Word search - Crosswords - Mad lib : children have to fill the blanks in a story - Mindbenders and puzzles
They can be used for fun, or emotional expression, or education. You can take classic existing forms and adapt them with themes linked to health and disease. They can be used by the children in the children space, or doing a break during Group Sessions. 4.7.7 Creative activities This includes the following activities: colouring figures, drawing, painting, sculpting, arts and crafts, origamis, handicrafts, modelling clay or plasticine, sand therapy, taking photographs, making hero books, etc Having children access creative activities will allow: - to develop the child imagination and creativity - to have him enjoy the activity, and associate nice souvenirs with the HIV follow-up - to understand child's representation of something (human body, family, ) - to let him express of he understood the content of a book, story, - to have him express emotions that will help the staff understand how he feels. Children seldom spontaneously mention their feelings, so creative techniques facilitate expression and discussion. Counsellors should preferably be trained in these techniques. All children are able to make arts and crafts. However, some unscholared children may be not used to such activities. They will catch up fast and like it, if you introduce it progressively (not too long activities at the beginning). Children from 2 till 4 may be gradually introduced to colouring images. With older children, you can start oriented drawing: ask them to draw something about the topic you are working on (e.g. your family, your virus, your dream about the future,etc). Keep a collection of drawings ready, about the different topics you may want to discuss. Drawing / Colouring can also be used to calm down a child when necessary. Keep a file with prepared drawings to use whenever you need. (cf on the DVD and on the internet). Try to keep them linked with the theme you are working on. It is particularly interesting to ask the children to draw their body on a big poster. This helps you when starting the support, to see the perception of the child comparing to human body and anatomy.
64
During Group Sessions, you can organise individual work of arts and craft. Children can present their work to the group afterwards. For bigger children, it is possible to make arts in groups of about 3 children. Crafts can be made to prepare a small performance, e.g.; with puppets. The Hero book (or record-keeping books) are particularly interesting: the child makes a book where he expresses his feelings, presents his family, his heroes, what he wants to be in the future, ... The sand therapy: given a sand tray, and miniatures of people, animals, buildings, bridges, vehicles, furniture, food, plants and rocks, the child can build scenes on the sand.
Use the crafts made by the children in a respectful way: they can take them home. Or you can show some of them at the clinic or in other public places. Each child should have his childrens box, in which he can store his creations, drawings, writings, personal pictures, and other important things for him. It shows respect towards his creation, can help to see evolution of the child and to show the care-takers what he is doing during group sessions. Some teenagers groups may want to start income generating activities, by making crafts for sale. Such activity should rather be conducted by partner organisations. Make sure to separate such activities from your support group sessions.
4.7.8 Writing - discussing Writing allows the child to express his emotions: - Young children may be asked to write a letter to an imaginary sick person and give him advice. Or to write to a dead member of the family. - Hero books are a combination of writing and drawings. It is a powerful tool for allowing the child to express his emotions. - Some children may like to write poetry expressing what they go through. - Teenagers may be asked to write on a piece of paper what are their main difficulties concerning the illness - Teenagers may also start writing real life accounts. In groups, you can ask a child to read his writing, and start a discussion. Another method is to read a short story to the children, and discuss it with them. See in the DVD-rom (annex 1) several books compiled from childrens writings: - Childrens words, Rwanda. - Paint my life - Thailand
65
4.7.9 Handbooks / workbooks These are books or magazine-like documents meant for HIV infected youth, and combining several items presented above: - Counselling cards - Stories with images - Drawing - Writing - Treatment follow-up tools Such a book combines fun, education, and treatment support. It may be particularly useful for the start of the ARV treatment. It would be a lot of work to produce such a book, but you may find in your country that some organisation has made one, which you could use. Example : My living positively handbook, Childrens Rights Center, South Africa
4.7.10 Audio tools Have the child listen to some audio materials, for fun and/or education purpose: - Radio programs for children - Music, songs that he may learn and sing by himself - Stories Example : The story Belkhi, in its audio version (see on the DVD-rom, annex 1) 4.7.11 Films / movies There are many films, cartoons, video clips, about topics related with Patient Support: human body, diseases, HIV, ARV treatment, ways of contamination, social exclusion, etc. Be cautious for each film to see for which age categories it is convenient. Some movies can be shown in the waiting room. In that case, try to select general educative movies about health, relationships, etc that can be seen without a debate afterwards. In group sessions, it may be useful to give some explanation about the film before showing it. As for books, you can also distribute some roles to the participants. A movie shown to a group should be followed by a debate: prepare some questions to give before and/or after the movie. For difficult subjects such as sex education, participants can be given small pieces of paper on which to write anonymous questions that will be answered by the counsellors.
66
Examples of films : (provided in the DVD-rom, annex 1 or available through MSF) - The story of Bobo, WEB Foundation. - Problem ?, CWAC - The story of Baba, the litlle elephant - Vivre positivement, Films du Defi, Burkina Faso - Now You know, now what ?, Baylor 4.7.12 Performances A group of children may work with animators, and prepare a performance, which can be puppets, dance, music, singing, role-playing, theatre, pantomime, poetry, See Role-play and other activities for adolescents p 49 TOT Youth 1
The theme of the performance may be related to health, HIV or treatment, but this is not mandatory. Through drama, children can express their feeling and introduce notions of positive living. The activity also develops their life skills (living in a group, collective work). The activity should be conducted in an open way, allowing children to really express themselves. Avoid forcing children tell pre-selected poems like aids has killed my parents, they lie in their grave, ... . Such performances are pure manipulation of children, have no interest, and are even counter-productive! Songs shared by the group can reinforce the cohesion of the group. Try to use local well-known song with a useful text. Try to use the local culture and traditions, when choosing a play, or a dance Possibly invite some adult-patients to collaborate Once ready, the performances should be presented by the children: for example on childrens day, on public celebrations in the community, ... When organising such an event, make sure to evaluate properly the risk for the children of being exposed to social reactions!
67
4.7.13 Games and fun activities 1) Parlour Games (Jeux de socit) Board games, cards, memory, mikado, chess, ... Such games, played with accessories on a table, are generally very attractive for children. They can be easily adapted to any context. These games can be used for educational purpose: they are chosen to address some specific content, but are also helpful to develop some life skills. In order to reach the educational purpose, its often necessary to build the game yourself. Try to make them so that they can be used more than once. They can also be used as pure recreational games. Dont forget that each culture has its habits concerning games. It sometimes takes a few gamesessions before children fully understand the rules.
Example: - The Love check memory game, see annex 2) Interactive/cooperative group activities These are interactive group activities and games, like: - Game show, ex. jeopardy - Debates : especially with adolescents - Icebreakers - Energisers : dodge ball games, - Quizzes - Cooperation games (with ropes, balls, ...) - The role-playing is an interactive oriented method where we ask children to play a realistic behaviour in a imaginary situation, without preparation. One or several participants are asked to act in a supposed situation. At the end of the game, ask the actors how they felt. Ask the observers to make a link between the role-play and the topic of the session.
Such games are expected to benefit the group by building life-skills: - Foster trust, self-esteem, self-confidence - Recognize and understand feelings - Deal with aggression and frustration - Help-seeking, autonomy and awareness - Favour group-cooperation - Group cohesiveness and social skills Dont forget to clarify the objective you want to reach before choosing your activity.
Examples: - Life-skills: In Sr Silke-Andrea Mallmann CPS. Building resilience in children affected by HIV/Aids. p 84-p131. Catholic Aids Action, Namibia - Friends tells friends on the street, Thai Red Cross AIDS Research Centre - 100 ways to energise groups, International HIV/Aids Alliance 3) Group Recreational Activities These are group activities which are not related to the treatment, but only meant for entertainment, group cohesion and some basic life-skills. Examples : Football tournament, visits to museum, hikes, trips, going to the cinema, or theatre, etc Children's party : The project should organize a big children party, at least once a year. Objective: it's a party! No work, no consultation, no counselling. The aim is for the kids to have some nice souvenirs associated with the staff of the project, and the other kids. It is essential that the complete staff of the project participate, so the children can meet the staff in a informal way. The families are invited with all their children. All kinds of activities may be organised: Toys and books available for children, games, football matches, mixing adults and children, food and drinks, dance, songs, puppets, or theatre play presented by some children, display of the art works done by the children (paintings, crafts, hero books, ...), distribution of prizes or rewards (snacks, candies, certificate, pencils, T-shirts) for the most regular clinic attender, the nicest drawings, etc Beware: Children might not want to be seen with MSF staff, or in MSF car, going to an activity as they feel they could be identified as HIV positive. Just take the necessary arrangements to avoid involuntary disclosure of their diagnosis.
Examples: - www.funandgames.org/index.html - www.centerofweb.com/kids/games/xtra_games.htm - www.gameskidsplay.net
69
5) IMPLEMENTATION OF A CHILDREN SPECIFIC APPROACH

This chapter examines how the recommendations of this guideline may be practically implemented in an HIV/Aids project. For an illustration of the implementation of these services in a project, read the many articles about practical implementation on the field, by MSF and others, gathered on the DVD-rom in annex 1, in the section Documentation for staff - Field Experiences. Among others: - ART for children in Rwanda Dr Johan van Griensven - Psycho-social support HIV children Kenya - Dr Joelle VanWinghem - Improve the care of seropositive children in Mozambique Dr Raquel Yokoda
5.1 The minimal package

This guideline presents a large number of possible things to do for children support. It is obviously impossible for all project to implement all of these suggestions. This section identifies the essential elements that should always be part of a children specific approach. All projects should implement a minimal package of patient support services, including: - A child-patients file, recording his medical, counselling and social history - A child-friendly environment in the clinic - A children consultation day at the clinic - Child-friendly staff specifically trained on medical care and patient support for children. - Individual Counselling (pre-test, post test, disclosure, follow-up, ARV preparation, and adherence counselling) to the child and his care-taker, specifically adapted to the childs age and situation. - Encourage the testing of the children of HIV positive adults - A set of counselling cards adequate for children of different class of ages, used in each consultation room - A basic pill-taking tool for children, like the pill pathway. This minimal package being really minimal, projects should try to go towards the recommended (full) package, by adding: - A strategy of recruitment of HIV infected children - An approach based on age-categories - A children room or corner with toys in the clinic - Books about the disease and the treatment: at the very least A book or leaflet for the care-taker of an infected child, explaining the basics about the care and support for the child one book for the non disclosed children (not naming the disease) and one book for the disclosed children (naming HIV/Aids) - Different tools for pill-taking follow-up - Group sessions (educative and supportive) for children from the age of 8. A group should have only children from the same age category and the same level of disclosure. - Group sessions (educative and supportive) for care-takers - Social support and community follow-up, possibly through partners - Films, games, creative activities - Organize a children party, once a year Some of these activities should be developed with partner organisations.
Important Remark: This guideline is conceived for an HIV/AIDS project having an important cohort of patients attended in one central clinic. However, with decentralization, and integration of HIV/Aids services in primary health care structures, more and more medical structures will have only a limited number of child-patients, and limited staff and resources to support them. Many of the recommendations in this guideline (children day, support groups, .) will not be implementable as such in a small peripheral structure. At the present stage, we lack field experience on implementing a children specific approach in a small structure, with few patients, and less means. Below are a few suggestions: - The objective remains to implement the minimal package. - The staff of the peripheral structure should receive training on paediatric medical care, and patient support for children. - As the peripheral structure may give a lower level of counselling and social follow-up, it becomes even more important to develop a good community follow-up - Try to keep a strong link between the peripheral structure and a clinic of reference for HIV/Aids, which can provide support : training, pediatric tools, advice, organise support groups, etc - Consider using more self-use tools: a book given to the child to read by himself, or to the caretaker. For example, on basic health topics, or an ARV initiation handbook - Once a month, try and gather the children from different health structures, in a central place, in order to organise Support Groups, and Group activities. This should be conducted with the counsellors and educators from the peripheral structures, as the children may be lost if they would meet different persons on the different places. - Consider lobbying the MoH for allocating more means for the peripheral structures (staff, training, materials, ) - Each project should try and develop more ideas, and report to Headquarters for sharing their experience with others. Experience will help to improve a child-specific approach in a peripheral health structure, with little resources.
5.2 Who is in charge of coordinating the Children Support ?

In a simplified view, an HIV project provides 2 types of services, to 2 categories of patients: MEDICAL CARE ADULTS CHILDREN Adult Care Pediatric Care PATIENT SUPPORT Adult Support Children Support
In order to give enough attention to the Patient Support to Child-patients, and to implement a coherent children specific approach, an HIV/Aids project should name one person in charge of Children Support
71
- The person in charge of coordinating the Children Support should read the guideline, analyse the situation in the project, establish a plan of improvement of the children support, and coordinate its implementation. - This is not a permanent full-time position, it is a responsibility that may be added in the Job Description of an existing team member. - Typically, this responsibility might be fulfilled in 2 different ways: MEDICAL CARE ADULTS CHILDREN
Pediatric Care and Support Coordinator
PATIENT SUPPORT
Patient Support Coordinator
- Pediatric Care and Support Coordinator: a medical person is in charge of coordinating both medical care and patient support for children. - Patient Support Coordinator: a non-medical person is in charge of coordinating all about Patient Support, both for adults and children. The person in charge of Children Support should organise the work of all staff concerning children, rather than be himself active daily on performing these tasks. The present guideline has been written for the attention of this Children Support Coordinator. After reading it, and its annexes, he should work out the strategy and tools that will be provided to the whole team for use in the project. This may include: Push the project to improve its child-patient recruitment : from other medical services, in the community, orphanages, etc ... Make sure to provide basic training for the general staff on children care Make sure to provide training on paediatric treatment for the medical staff Make sure to provide training on paediatric support and counselling for the patient support staff Prepare the specific tools : books, video, pill-taking sheet, posters ... Make the clinic a child-friendly environment Organize the Children consultation day at the clinic Organize the social consultation and the home visits by volunteers, and the defaulter tracing for children Organize the Children parties, once or twice a year Etc
72
5.3 Planning of implementation

This section gives a basic step by step instruction, for the Children Support Coordinator, on how to set up / improve a specific approach for Children in the HIV project. 5.3.1 Get familiar with all the basic principles and recommendations - Read this guideline! - See the annexes! (Films, articles, books, tools, ) - Talk to people experienced on children support, in the project or in other organisations - Contact Headquarters if help is needed 5.3.2 Analyse the current situation in the project - See how many children patients, in each category of age - Try to make an estimation of how many more HIV infected babies and children may actually be in our target population, but are not yet in the project - See what is currently done for patient recruitment of babies and children - How is the access to DNA-PCR testing for the babies? - What are the main challenges encountered concerning the medical treatment? - How many staff do we have for the (adults and children) patient support? Is it enough? - Is the staff trained for paediatric support? - What specific services does the project have so far, for children patient support? (child-friendly environment, children space, children consultation day at the clinic, group sessions, counselling cards, books, films, games, activities, ) - What are the ideas and demands from the counsellors and other members of the patient support team, concerning children? - What are the demands from the care-takers of infected children? - What are the demands from the children patients? - Does the project collaborate with local partners on some components of the patient support? If not, are there potential partners? - What are the other organisations involved in Children-patient support? MoH, International organisations (Clinton, FHI, SCF, Unicef, ), local CBOs, etc Did they develop some training, tools, or activities that we might use ? (See annex 8 for a list of the main organisations involved in HIV/Aids projects) - Are there regular meetings of these main actors, in order to facilitate collaboration between them? If not, would there be interest to create it ? 5.3.3 Set objectives for the project From the analyse, and the recommendations of this guideline, establish a number of objectives for the project, and a timed plan to reach them. General objectives: - Increase the number of children in the project - Provide adequate care and support to them Specific objectives may be: Implementation of the minimal package of support: - Develop a specific patient recruitment for children - Install childfriendly environment - Install childfriendly medical care - Install specific tools and activities - Organise training for the staff
5.3.4 Organise the necessary resources - Identify the financial, material, and human means required for developing the specific approach as presented in the objectives. - Make sure to have these needs validated and accepted by the Project Coordination - If necessary, ask for a support visit from the Headquarters, or a temporary assignment in the project.
5.4 Specific recommendations per age class

This chapter gives an overview of the main recommendations from this guideline, presented per age-group. This provides a rapid reminder of the main elements to keep in mind for each class of age. Details about the concepts mentioned should be found in the relevant chapters and sections of the guideline. 5.4.1 Babies (0-2 years) The care for HIV infected babies and toddlers requires a specific approach in terms of counselling and adherence: instead of working with the patient himself, the counselling and support team must essentially work with the care-taker of the baby. This category of patients will increase in the coming years, due to the improved access to testing, and the adoption of the early treatment protocol: any baby under the age of 12 months who is HIV infected, is immediately started on ARVs. The child: - Cognitive development: the child has a practical intelligence: sensori-motor, trough perception of the environment and physical manipulation of objects - Conception of health: the child doesnt understand the concept of illness but he "feels" the pain - Conception of death: he has no understanding of death, death people are like sleeping people - Psychosocial development: the baby has to develop fundamental trust, importance of attachment. From around 18 months, the toddler starts developing for autonomy. He likes solitary playing. - Topics of communication and disclosure: just communicate with the child about whats happening now (going to the doctor, listening to your heart, will not hurt, etc.). Even if the child does not understand, he feels a lot through verbal and non-verbal language. If he feels his caretakers are comfortable and trusting doctors, it will reassure him. With the children from 1 year on, you can make them feel at ease with picture-books about Going to the doctor. Just let the caretakers read the books with them in the waiting-room or give the book to the child while you are counselling the caretakers. These contacts and communication with the child are aimed at creating a trustful relation despite the possibly frightening environment of the white blouses! - Tools : Books : pictures books Films : cartoons - Adherence: with babies, adherence totally depends of the caretakers. When the child starts fighting for autonomy (around 12-18 months) the care-taker will have to be creative to give drugs in a way the child will not be aware. If the child doesn't refuse them and starts accepting, help parents with practical tips on how to give them by reinforcing him positively, applauding him.
74
The Care-Taker: - Before starting the treatment of the infant, it is necessary to identify 1 (preferably 2) caretaker(s), who are motivated to be responsible for the continuous follow-up of the child: the caretaker must live with the infant, feel responsible for all his needs, and make sure these are responded. He must commit to learn all about the infection and the treatment, and to guarantee the proper care for the child. The social services of the project have to know where the infant and care-taker live, and if possible make a home visit. - This care-taker might be a HIV negative person needing to learn about HIV, it might be a grandmother who is illiterate, or does not trust modern medicines and prefers traditional healers, it might be an uncle having inherited the child, but not being really motivated for preserving its health, ... - The counselling and support team has to develop activities aiming to establish a good collaboration with the care-taker, in order to guarantee the adherence of the infant to his treatment. This includes : Provide individual counselling to the care-taker himself, to help him cope with his own emotions. He might be in a mourning process, feel guilt for the HIV infection of the child, especially young mothers having recently given birth and transmitted HIV, fear of loosing the child, Explain the basic health and nutrition recommendations Explain HIV / Aids. The care-taker may already have received the basic explanations, during HIV Educative talks for adults. If not, take enough time to explain all necessary general information about HIV and ART. Explain HIV / Aids specificities with infants, and the treatment. Importance of coming to all appointments, explain the challenges of a chronic disease. Teach how to provide the treatment to the baby (powder mixed with food, how to measure x ml of syrup with a syringe, ...) Propose a treatment follow-up tool Organise specific Support Groups for Care-takers of infants, where they will receive further information, plus the possibility to express and compare their experiences. 5.4.2 Young children (3-7 years) Sub-stage 1: Egocentric mind: 2-4 years - Cognitive development: the toddler develops mental representation of things. He has an egocentric way of thinking and magical thoughts. Child's imaginary and creativity can be worse than reality - Conception of health: the toddler can name external organs but has no representation of internal organs, he understands illness because of the place and moment of feeling pain - Conception of death: the child understands death as a temporary separation - Psychosocial development: Autonomy increases and the child wants to master the world around him. He and takes initiatives to develop personal abilities. The Why? becomes his favourite question. He shows interest for the others and likes parallel playing, using collective monologues. Around 3 to 4 years, the child starts associated playing. - Topics of communication and disclosure : When testing, disclose the result of the test to the care-taker without the child. The child will receive progressive disclosure later. It is of course too early to explain the diagnostic. Talk to the child about coming to the hospital, and what the doctor does, in order to involve him in the consultations. The child is afraid of white shirts, needles, and the fear of being abandoned by his
75
care-takers. Use his imagination to communicate with him. (Example: there is a microbe in your body that can make you ill, let us take a drug to put him asleep) Adherence support: Set up some procedures and habits for the pill-taking. The aim is to associate the drug with daily activities and routines (e.g. during breakfast, before brushing teeth, etc). Try to associate it with activities the child likes. In any case, congratulate him every time. Tools & games : Books : picture books Creative activities : colouring, drawing, modelling clay Films : cartoons Performances : puppets, teddy bears Gales and fun activities : Ice-breakers & energizers Differed imitation: the game of "To do like if" is one of the main activities of the child. He reproduces models (imitation) but on a later time (differed) Symbolic games: The child transforms reality trough his symbolic mind, his fantasy and wishes. Trough the game, the child can securely replay frightening events, like a visit to the doctor.
Sub-stage 2: Intuitive mind: 5-7 years - Cognitive development: the child starts intuitive logical thinking but with gaps, less egocentric - Conception of health: the child is still concentrated on external organs, but imagines his inside organs are kept together by the skin. He makes links between previous proximity and contagion, between illness and prevention. He might consider the disease as a punishment. - Conception of death: he understands death for older people, then starts considering he can die as well one day, makes links between illness, drugs, hospital, death. - Psychosocial development: the child has sense of initiative. He can feel guilt over things which are not logically guilt producing. Imagination of the egocentric mind of the child can create fears. Neighbourhood and school get importance. He joins groups of peers to play with them for a long time. They like differed imitation and symbolic games in which they express emotions and replay frightening events. Topics of communication and disclosure : Children still have difficulties keeping a secret and might disclose in wrong circumstances. That's why we generally do not use the term HIV/Aids. Start the progressive disclosure, by giving information on his health in general: health, diseases, drugs, diseases transmission, etc (Ex. taking drugs will avoid you to cough like last time) Listen to the child, reassure him, free him from guilt from imaginary thoughts (Ex. Having that microbe in your body does not mean you did something wrong. It is nobodys fault). Give information about the present, as he does not think much about the future. Do not lie! Adult words are the truth! The children have big ears! Do not talk in front of them about things they should not know. Do not let them attend the adult Support Group, thinking they will not catch. Adherence support: Ask the child to recognize his drugs among others, using colours and sizes. Insist on creating routines in the drug-taking. The child should explain when he takes the drugs, and how, and with the help of whom. Propose the child to use a Pill-taking follow-up tool and think of applauding if he is doing well. Once in a while, you can use a reward system if he is doing well.
76
Individual counselling: The counsellor should sometimes attend the child alone, without the care taker. The child may have several problems related to the care-taker, which he would not mention in front of him. When counselling child and care-taker together, the counsellor should not address to the care-taker while neglecting the child. Even if he does not understand all, keep the child as the very centre of the relation, talk to him, and establish a trustful relation with him. Group Sessions: The project should hold specific Group Sessions with groups of children of this age. These will only be short sequences of activities as it's not easy to keep them concentrated long time. Tools & games : Books : picture books, fairy-tales Pill-taking follow-up tools Creative activities : colouring, drawing, modelling clay Films : cartoons Performances : puppets Games and fun activities : card games, board games, ice-breakers, energizers
5.4.3 Children (8-12 years) If you have many children, it is recommended to split the group in two: 8-10 years and 10-12 years. In this age-category, it is very important to pay attention to each childs level of disclosure. NEVER mix in the same support groups children who know their diagnostic with those who dont know! - Cognitive development: the child has acquired logical thinking to solve concrete operations like mathematics - Conception of health: he has a representation of internal organs and actions and thinks by analogy - Conception of death: death is something normal and child wonders what happens after death, he understands he will die one day, he refers to biological principles - Psychosocial development: the child learns the pleasure of ended work, production, achieving goals, succeeding and being applauded. He develops a sense of personal competence, the basis of development of the childs self-esteem. Propose him to meet other children who have the same disease , encourage a normal social life with family and school - Disclosure & topics of communication: When testing, disclose first to the care-taker without the child. Depending on the discussion during pre-test, decide for a total or a progressive disclosure Explain to the child the human body, with appropriate analogy (ex. the CD4 cells are soldiers). The child is able to understand the immune system, the disease, and why blood must be taken Answer his questions and encourage the care-takers to communicate openly about the disease If the care-takers refuse to discuss it with the child, listen to them, and understand their fears. Do not judge them; do not make lessons of morale. Think with them about the risks of secrecy, and the advantages of disclosing This period has to end with total disclosure, naming the diagnosis of HIV/Aids
After the total disclosure, continue follow-up sessions, in order to follow the emotional difficulties
Adherence support : Give information on the disease, the child needs to understand He should know the names of the drugs Help him organise and discipline himself for taking the drugs Use Activity sheets and pill-taking follow-up tools Individual Counselling : The counsellor should sometimes attend the child alone, without the care taker. The child may have several problems related to the care-taker, which he would not mention in front of him When counselling child and care-taker together, the counsellor should not address to the care-taker while neglecting the child. Even if he does not understand all, keep the child as the very centre of the relation, talk to him, and establish a trustful relation with him Group sessions : The project should hold specific Group Sessions with groups of this age. Make two different groups: one for those who know their diagnosis of HIV, one for those who don't know. Tools and activities: Counselling cards / Flipcharts Posters Books: fairy-tales, comic books, technical books, real life accounts Pill-taking follow-up tools Activity sheets Creative activities: drawing, handicrafts, sculpting Writing activity: hero book Films Performances: charades, puppets, dance, singing, role-play, pantomime, theatre Games and fun activities: board games, card games, quizzes, cooperation games, indoor games, ice-breakers, energisers Group recreational activities: football tournament, visits to museum, hikes, trips, childrens parties
5.4.4 Teenagers (13-18 years) The adolescent becomes progressively more responsible, and therefore must be given more responsibilities in the management of his own health. Depending on the HIV clinic, at a certain age, he will also have to move from paediatric care to adult care. This can be a difficult step, in which the teenager should be accompanied. Cognitive development: the adolescent has acquired a hypothetic-deductive way of thinking; he can builds hypotheses and makes experiences (stage of formal operations) Conception of health: he makes hypotheses about causes of illness, links between symptoms and functions of organs, understands concept of chronicity and life-long treatment Conception of death: he is sceptic about going to heaven but knows every one has to die one day
78
Psychosocial development: Adolescence is experienced differently in different cultures. The adolescent faces physical maturation often associated with introspective process. He has to build an ego identity. He likes cooperative and competition playing. He likes to be part of a group, and be like the others, therefore peer groups are very important. Encourage meeting with adolescents of the same age who are also infected. Testing: Teenagers might come for testing under various scenarios : a teenager might come alone, a pregnant girl might come with a friend, a group of teenagers might want to test all together, etcNational or projects recommendations should establish criteria (age, sexually active, having children, ) on whether to accept or not each possible scenario. Example of criteria: * under 13 years, the child must be accompanied by a care-taker * between 13 and 16, the teenager must be accompanied by somebody * above 16, the teenager should preferably be accompanied, but may be tested alone If a teenager has tested positive and is afraid of informing his partner, suggest him to propose the partner to go together for testing, as if it were the first time for both.
Disclosure & topics of communication: If total disclosure is not yet done, it must urgently be completed. Give him information. Use images to explain in details the disease and the treatment. Talk about ways of contamination and protection, including condoms. If he asks about the seriousness of the disease, do not lie, maintain a realistic hope, and be supportive. Pay particular attention to the emotional (in)stability of the teenager, who in some cases might consider suicide. Adherence support: This age has a higher risk of poor adherence Teenagers may tend to not take their drugs, as a rebel attitude, or to see how it feels , or because they feel hopeless. Insist on the importance of adherence, and explain about drug resistance Peer educators are particularly efficient at this age : a teenager patient who has disclosed is best able to understand and assist another teenager in facing the disease. Individual counselling: Confirm that the adolescent is your main counterpart, and the main actor of his own treatment. The counsellor should attend the adolescent alone, without the care taker. At this age, he might not want to tell all to his care-takers. Sessions with adolescent and care-taker should also be proposed to the adolescent Give enough time, for him to express his emotions. Discuss sexual relations and provide necessary information Help him disclose to his sexual partners Group Sessions: The project should hold specific Group Sessions with adolescents. Discuss sexual relations and provide necessary information Discuss about future, friends, relations
79
Tools and activities : Counselling cards / Flipcharts Posters Books: fairy-tales, comic books, technical books, real life accounts, photo-roman, novel Pill-taking follow-up tools for teenagers Creative activities: drawing, handicrafts, sculpting, photographs Writing activity: hero books Films Performances: charades, dance, singing, role-play, pantomime, theatre Games and fun activities: board games, card games, quizzes, cooperation games, debates, ice-breakers, energisers Recreational activities: football tournament, visits to museum, hikes, trips, childrens parties
80
6) ANNEXES
Annex 1 : DVD-Rom Patient support for HIV infected children : Tools, Activities and References Annex 2 : Cognitive development and evolution of a child towards understanding of health Annex 3 : The psychosocial development of the child Annex 4 : Counselling HIV+ children and their care-takers Annex 5 : Disclosure of HIV diagnosis to children Annex 6 : Children's adherence to treatment Annex 7 : Training on "Support to children living with HIV/Aids"
(addressed to general staff & to patient support staff)
Annex 8 : International organisations active on HIV/Aids and children
81
Lexicon
ANC : AnteNatal Care (French : CPN) ART : Anti Retro Viral Therapy ARV : Anti Retro Viral (drugs) Care-Taker : the adult person in charge of a child (= Care giver / Tutor / Parent / Guardian) CBO : Community Based Organization CHBC : Community Home Based Care CHHH : Child-Headed HouseHold CPN : Consultation PrNatale (English : ANC) DBS : Dry Blood Spotting DCT : Diagnostic Counselling and Testing (=PICT) ECD : Early Childhood Development FBO : Faith Based Organization HAART : Highly Active Anti Retro Viral Therapy HBC : Home Based Care HCCS : Home and Community Care and Support HH : Household IEC : Information, Education and Communication OEV : Orphelins et Enfants Vulnrables (English : OVC) OI : Opportunistic Infection OVC : Orphans and Vulnerable Children (French : OEV) PCR : Polymerase Chain Reaction (HIV test used for children under 18 months) PEPFAR : President's Emergency Plan For Aids Relief (USA) PITC : Provider Initiated Testing and Counselling PLWHA : People Living With HIV & Aids PMTCT : Prevention of Mother To Child Transmission (=PVT) PTC : Post Test Club (= Support Groups) PVT : Prevention of Vertical Transmission (=PMTCT) TL : Treatment Literacy VCT : Voluntary Counselling and Testing
82
Bibliography
Aboud, F.E. & Doyle, A.B. (1993). L'identit ethnique : son fondement philosophique et son impact en ducation. In C. Gohier & M. Schleifer (sous la direction de), La question de l'identit. Qui suisje? Qui est l'autre? Montral : Les Editions Logiques. American Academy of Pediatrics. (January 1999). Disclosure of illness status to children and adolescents with HIV infection. Pediatrics Vol. 103 No 1. Camilleri, C. (1993). Rencontre des cultures et avatars identitaires. Projet, 235, 23-30. Chazal E., Reeynaud C., Szumilin E.S. & Balkan S. (June 2005). Disclosure of HIV diagnosis to children : compiled documents. Mdecins Sans Frontires, Paris. Dolle, J.M. (1991). Pour comprendre Jean Piaget. Toulouse : Privat. Erikson, E.H. (1966). Enfance et socit (4me d.). (Titre original : Childhood and Society, 1955). Neuchtel : Delachaux et Niestl. Foubert, J. (2007-2008)., Pediatrische verpleegkunde. Erasmushogeschool Brussel. Gerson et al. (July/August 2001). Disclosure of HIV diagnosis to children : when, where, why and how. In Journal of Pediatric Health Care (PHC). Volume 15, number 4. Grand dictionnaire de la psychologie. (1991). Paris : Larousse. Heyster, H & Verheijen, H. (1998). Psychologie voor kinderverpleegkundigen. Elsevier/De Tijdstroom, Maarssen. Hilton, D. (1995). Psychosociale hulpverlening. Aan ouders van kinderen met een chronische aandoening of handicap. Lemma. Utrecht. International Center for Aids Care and and Treatment Programs (ICAP). Pediatric adherence. Columbia University : Mailmman School of Public Health Koopman, H.M. et al. (December 2004) Illness through the eyes of the child : the development of childrens understanding of the causes of illness. Patient Education and Counselling. Volume 55. p 363-370. Lakhonphon S. & Wilson, D. MSF in Thaland (may 2006). Issues in taking care of HIV-infected children and their families: communication, disclosure and the process of inner healing. Melvin D. (2007). HIV and children, power point presentation, MSF training, Berlin Mucchielli, A. (1996). L'identit. Paris : Presses Universitaires de France.
Newman, B.M. & Newman, P.R. (1975). Development through life. A psychosocial approach. (1re d.). Illinois : The Dorsey Press. Oppenheim, D. (Octobre 2000) Dialogues avec les enfants sur la vie et la mort. Editions du Seuil. Passone, S.M. (1992-1993). Psychologie de l'enfant et de l'adolescent. Rfrentiel de cours. Universit Catholique de Louvain. Peltier, A. (2007) Annonce du diagnostic dinfection par le VIH/Sida chez lenfant : un enjeu majeur de lducation thrapeutique. Proposition dune mthode dannonce et doutils didactiques utiliss depuis 1999 dans de nombreux pays. In Dveloppement et Sant, n187. PKIDsPHR. (Parents of kids with infectious diseases). Disclosing to our children. What the HIV Experience has taught us. (379-384) Ponnet, M., Ounjit, N., Lakhonphol,S., Frederix, K., Wilson, D., Zachariah, R. (2005). Offering highly active antiretroviral treatment to children in Thaland : the difficulties. In Resaerch letter, p 251. Pontali, E. (2005) Facilitating Adherence to Highly Active Antiretroviral Therapy in Children with HIV infection. What are the issues and what can be done ? In Pediatric drugs, 2005, n 7, 137-149. Population Reports. (Dcembre 1998). Guide de counselling, srie J, numro 48 Rabkin, El-Sadr and Abrams. (September 2004). Pediatric Disclosure : Talking to children about HIV. in The Columbia Clinical Manual, Chapter 3.4. Southern African AIDS Trust (SAT) (January 2003). Guidelines for counselling children who are infected with HIV or affected by HIV and Aids. HIV Counselling series No 7. Zimbabwe. Wibault, S. Education thrapeutique de lenfant vivant avec le VIH/Sida. Exprience de la clinique TRAC (Rwanda, Esther Luxembourg), in Dveloppement et Sant, n 187, 2007
84

Patient Support For Hiv Infected Children

Caricato da

Informazioni sul documento

Titolo originale

Copyright

Formati disponibili

Condividi questo documento

Condividi o incorpora il documento

Opzioni di condivisione

Hai trovato utile questo documento?

Questo contenuto è inappropriato?

Copyright:

Formati disponibili

Patient Support For Hiv Infected Children

Caricato da

Copyright:

Formati disponibili

Patient Support for HIV infected children

MSF-OCB September 2008

Kathleen Bosteels and David Goetghebuer