The 'Treasure Yourself - My HIV Journey Book' is an interactive and personalizable work book created for the HIV/AIDS education of HIV-positive teenagers from South Africa. Based on the Journey Concept, I developed the My Journey Book in close cooperation with psychosocial workers, health workers and facilitators. The My Journey book is a buddy to accompany and support the children on their very own journey through a life with HIV. At this, the book is user-centered, meaning that it addresses all topics that are relevant for the children's personal development. It provides them with useful information about HIV and AIDS tailored to HIV-positive people, gives them insight into all topics that are most relevant for them to live a happy and healthy life and supports them in coping with challenges of their everyday life by actively engaging with their personal problems, fears, dreams and strengths through fun filled exercises.
Its content is tailored to the specific needs of HIV-positive teenagers aged 13-18. In South Africa, this target group is at high risk of dropping out of antiretroviral therapy and of giving up on themselves. The purpose of the My Journey Book is to accompany the teens on their journey with HIV and to be a guide for every difficult situation they might encounter due to their HIV-positive status. Therefore, the My Journey Book’s content includes personal information about the children themselves, information about HIV transmission and prevention, information about how to stay healthy and about how to live a happy life.
Khayelitsha township, South Africa
>> The entire content including graphics, topics and language is adaptable to different user groups inside and outside of South Africa <<
HIV-positive teenagers from South African townships
Goals and Functionalities
Information about HIV and AIDS for People Living with HIV
The My Journey Book's most fundamental functionality is to provide information about HIV prevention, treatment and care targeting HIV-positive teenagers from under-served communities. At this, the book addresses subjects such as HIV prevention with positives, HIV transmission and treatment as well as misconceptions and wrong believes resulting from sociological influences of their immediate surrounding or from traditional believes of their older siblings, parents or guardians.
For children and teenagers living with HIV it is essential to be well informed about the characteristics of HIV and the risks of HIV transmission. They must understand their great responsibility towards their social contacts such as friends, family members and sexual partners, towards the entire community they grow up in but also towards the entire HIV epidemic of South Africa. Each child can make a difference, but it must be equipped with extensive knowledge and skills.
Until now, there is only little information material available in Southern Africa that is tailored to the specific needs of HIV-positive teenagers and young adults living with HIV. However, especially for regions like this with a disproportionally young population, the HIV education of HIV-positive children, teenagers and young adults is crucial for a decrease of the number of new HIV infections. Young people must be educated about and trained in HIV prevention strategies, in particular HIV-positive people as they are at great risk of spreading the virus. However, despite the work of various HIV prevention programs, the knowledge level about HIV amongst South Africa’s youth is still dramatically low.
Medical HIV Passport
The My Journey Book includes a personal medical HIV passport for the children in which doctors and nurses can record the children’s viral load, their medication and their next check-up appointment. This allows the clinic, the children, their families and aid organizations to keep track of the children’s health. This functionality is especially valuable when the children leave their guardians to live in another community or even country. Because most children live with caregivers instead of with their parents, they are very likely to be transferred to different foster families during their childhood. However, the majority of children is not aware of their health status, their HIV type, their viral load, their next doctor’s appointment or even about the medication they are taking. When they move and visit a new health clinic, the doctors and nurses must start from scratch to keep the children on accurate medication, because they do receive any information about the progress of the child’s HIV infection. A medical pass included in the My Journey Book will help the doctors to react faster and provide the child with the right medication. This is particularly important, as taking ARVs unregularly can cause huge damage to the child’s health, as the virus becomes immune against the drugs, which makes its suppression even more difficult.
HIV-positive people are quickly pushed to the edge of society due to stigma, discrimination and wrong ideologies of a community. Many of them lose their self-esteem, suffer from drug addictions, drop out of school, get involved in criminal activities and at one point, give up on life. Therefore, HIV-positive teenagers growing up in this hostile environment not only need HIV education, but also support in order to be able to develop reaction strategies that help build self-esteem to cope with traumatic events.
Resilience and a positive attitude towards life are the basis for a future that allows them to live a responsible life with the virus and to cope with life’s challenges. People with high resilience are more likely to succeed in school, to find a job, to stay healthy in the long run and to disclose their HIV status with their sexual partner. Moreover, they are less likely to get involved in gang activity and crimes such as drug abuse, rape, or murder.
Therefore, supporting resilience among the HIV-positive children and teenagers to help them live a responsible and proud life is one of the major purposes of the My Journey Book. In order to build resilience, people need to know how to proceed in life to reach their life goals, they must be aware of who they are, of what makes them precious and of what they might be able to accomplish. The My Journey Book's interactive design allows the children to engage with the content and to reflect about themselves, about their values, their lives, their dreams and fears. The goal of these exercises is for the children to treasure themselves and to build up self-confidence, hope and a positive attitude towards life.
Life Coach and Buddy
The My Journey Book's function as a life coach for difficult real-life situations HIV-positive teenagers have to deal with is closely connected to supporting resilience. Situations such as disclosure to friends and sexual partners as well as the exposure to discrimination and forced, unprotected intercourse can be traumatic events for teenagers. Most of them neither know how to cope with them nor how to react when they are in such a situation. The My Journey Book explains the most common and most difficult situations to the teenagers and teaches them how to react in these situations. By studying and practicing the appropriate response in the exercises, teenagers will become more self-confident and able to protect themselves in difficult situations. Knowing how to speak up for themselves does not only make the teens more able to protect themselves from negative life events, but also builds resilience to cope with these events once they occur.
Chapters and Sample Pages
Chapter 1: This is me
The first chapter of the My Journey Book offers the children the opportunity to discover themselves and to find out why they are a unique and special person. Exercises will help them develop self-respect and learn to value who they are as individuals. They should develop a strong sense of identity to function in a healthy way. Also, thinking about their own personality, qualities and values will empower them to develop self-love which promotes resilience. My research found that most children are proud of the person they are and that they know what they like best about themselves. The purpose of this chapter is to reinforce those positive thoughts and to use them to direct the teenager’s lives towards their goals.
Also, the first chapter includes a diary section where the kids write down their personal feelings and sorrows. It will be their safe place to deal with problems and sorrows such as the fear of disclosing, internal stigma and also the fear of falling sick from AIDS. Dying from AIDS is a fear a great proportion of children living with HIV. In order for them to be able to cope with their fears, it is important to actively engage with them. However, many children do not want to discuss their sorrows with friends and family or facilitators. They want to maintain a strong, self-confident image. A diary will help them to become more aware of their personal struggles and deal with their fears.
Chapter 2: Learn about HIV and AIDS
A great proportion of the teenagers only knows the generics but not the specifics about HIV and AIDS, and do not possess any understanding of how the virus works inside the body and of how AIDS develops. As a result, this hinders them in understanding the functionalities and importance of ARVs and provides a breeding ground for HIV myths and misconceptions. To build correct conceptions about HIV transmission, prevention and treatment, the teens must establish an extensive fundament of knowledge. This is especially important for HIV-positive people, as they are directly affected by the virus.
The My Journey Book's second chapter focusses on the HIV education of HIV-positive teenagers. The goal of this chapter is to give the teenagers a correct understanding of what HIV and AIDS are. They need to know how HIV affects their health, which role the immune system plays and how AIDS develops. This understanding is fundamental for them in order to react appropriately in risk situations and to keep their body healthy.
Knowing how the virus functions inside their bodies will also allow them to understand why ARVs are so important, how they suppress the virus and what happens when they drop out of ART. Furthermore, this chapter has the purpose to empower them to spread correct information about HIV and AIDS. The teenagers should be able to inform other people about the virus and to recognize misconceptions and wrong believes regarding HIV. This will not only help them to prevent new HIV infections associated with themselves, but also to prevent other people from spreading or contracting the virus. Also, they need to understand how they can detect acute HIV infections or AIDS related events in order to become aware of their own and other people’s health status. Being aware of the symptoms and effects of HIV and AIDS will allow them to always be one step ahead of the virus.
Chapter 3: Stay healthy and prevent
The third chapter is an extension of the second chapter. It includes information about HIV prevention and treatment tailored to HIV-positive people.
In order to empower the teens to live a safe and responsible life, the My Journey Book provides information about how the children can protect themselves from transmitting the virus to other people and from being re-infected with an immune virus. For this purpose, they must understand their responsibility towards their social surrounding resulting from their HIV-positive status as well as their own rights. The children need to learn why protecting themselves from HIV re-infection is important and why they must take ARVs. Understand the consequences of risky behavior will help them to live a responsible life.
An alarming proportion of HIV-positive teenagers from Southern Africa is not aware of HIV transmission modes and has dangerous misconceptions about HIV prevention.
Many of them trust myths about HIV prevention methods and have sex without a condom thus being a danger not only to themselves, but also to their sexual partners, who often are not aware of the fact they are sleeping with an HIV-positive person. A lack of knowledge about safe sex practices and misconceptions about condom usage often result from beliefs of the community the children grow up in and need to be objectively corrected through educational initiatives. Therefore, the My Journey book teaches about misconceptions regarding HIV transmission and prevention circulating in African communities, so that the teens are able to distinguish between myths and facts. This empowers them to identify risky situations and to successfully prevent further HIV transmissions.
Chapter 4: My body is a temple
This chapter provides detailed information about how HIV-positive people can live a full and healthy life. HIV weakens the immune system of HIV-positive people immensely, so they must take special care of their health. Therefore, this chapter includes multifaceted information essential for HIV-positive people such as general hygiene to reduce the risk of opportunistic infections and healthy nutrition to keep the body and the immune system intact, In addition, it contains information about the risks of alcohol and drug abuse. This chapter has the purpose to teach the teenagers to respect their bodies, how to take care of themselves and how to maintain a healthy lifestyle. The key goal is to keep the children’s immune system strong and their viral load low. This not only reduces their risk of falling sick from opportunistic infections, but also of transmitting HIV to other people.
Chapter 5: YOLO! Live it right
YOLO, meaning you only live once in youth slang, describes the content of the 5th chapter. Here, children learn to treasure their own lives, despite their HIV-positive status. The My Journey Book is meant to help them explore what it means to have self-respect, to value who they are as individuals and to believe in themselves. Each child has specific goals for their personal life and dreams of how they want to shape their future. Reinforcing these hopes and dreams and using them to direct the children towards building their own future is an essential part of the My Journey Book.
Another important goal of this chapter is to enable the teenagers to cope with stigma and discrimination successfully. The fear of being bullied and rejected due to their HIV-positive status is sad reality for most HIV-positive children in underserved communities. In order for them to live a happy and self-determined life, children must build resilience. One step towards a strong resilience is to develop the self-confidence to deal with traumatic situations such as discrimination through strangers, friends or even partners. For this purpose, the book provides information about how to react correctly in difficult situations in the form of cartoons. These cartoons help the children understand what bullying is and provide strategies for facing bullies. Exercises about reaction strategies allow the children to virtually engage with a discriminating situation and to come up with own responses. This will empower them to react correctly and fast, in case they get caught up in a corresponding situation in real life. Also, appropriate response strategies for abusive situations and the risk of trading sex for money, nice clothes, food or other goods is part of this chapter as it affects many children from underserved communities, young girls in particular.
Chapter 6: My health status
The sixth chapter provides the possibility to record healthcare information of the child, allowing clinics, the children, their families and aid organizations to keep track of the children’s health.
After every clinic visit for a viral load check, which should be done once per month (depending on the child’s treatment line) the doctor or nurse can fill in medical information about the viral load and the medication. Also, the doctor can write down the next appointment, so the children and their families will not forget about when to get a medical checkup. This chapter is especially important, as a great proportion of children and family members is not aware of their personal health status.