Love_Life_HIV_handouts by IPPF

Handouts

Contents Handout 1: Beginner's guide to HIV Handout 2: HIV-related stigma and discrimination Handout 3: Accessing services Handout 4: Finding love Handout 5: Having a family Handout 6: Being supported Handout 7: Getting involved

acknowledgements This publication has benefitted from the contributions, efforts and energy of many people. The main author was Lia De Pauw of Spark Public Health Group, and the main editor was Jon Hopkins from IPPF. We are especially grateful to: Adam Garner, GNP+; Dieneke ter Huurne and Kevin Osborne, IPPF; Lynn Collins and Mary Otieno, UNFPA; and Raoul Fransen dos Santos, Young Positives.

Handout

“When I started ARVs my CD4 count was 7, and now my CD4 count 466. So what I can say is that there is life after HIV.”

Beginner’s guide to HIV

Is HIV and AIDS a youth issue? Today’s young people (aged 15 to 24) have never known a world without HIV and AIDS. It is estimated that 5.4 million young people aged 15 to 24 are living with HIV around the world (IATT, 2008). This number continues to grow as 40 per cent of new HIV transmissions are among 15 to 24 year olds (Ibid, 2008). Young people can play an important role in preventing the onward transmission of HIV, reducing HIV-related stigma and discrimination in their communities, and increasing support for their peers who are living with HIV.

What do HIV and AIDS mean? HIV stands for human immunodeficiency virus. HIV is the virus that causes AIDS – acquired immune deficiency syndrome. Without treatment, HIV weakens people’s immune system and eventually they become sick with life-threatening infections and cancers. When this happens, a person living with HIV may be diagnosed as having AIDS.

How is HIV passed on? HIV is not easily passed from one person to another. The virus cannot live outside of the human body for a long time, nor can it be passed through casual contact like kissing, touching, hugging, or sharing plates and glasses. There is only a risk that HIV will be passed on from one person to another when all three parts of the transmission equation are present. The risk of HIV transmission is increased when one or both partners have an untreated sexually transmitted infection (STI). The transmission equation

A amount of fluid containing lots of HIV (such as semen, vaginal fluid, blood and breast milk)

An opening into the body (such as vagina, rectum, urethra and – for babies – the placenta and oesophagus)

An activity that moves body fluids between people (such as sexual activity, sharing injecting equipment, pregnancy and birthing, and breastfeeding)

Risk of HIV transmission

Why are there higher rates of HIV in some countries and groups of people? HIV is an illness of inequalities: the pattern of its transmission has followed existing paths of social and economic exclusion. There is a growing understanding that the health and well-being of individuals and populations is affected not only by their behaviours and genetics, but also by social, cultural, economic, political and historical factors that affect people’s ability to control the risk of becoming infected with HIV. Poverty, gender inequalities, and homophobia are some of the key social drivers of HIV epidemics.

Love, Life and HIV: Handout 1 Beginners's guide to HIV

What does HIV do to the body?

How do you know if you have HIV?

The immune system is the body’s defence against infections. The immune system has several parts: skin, mucous membranes (such as the wet lining of the mouth or genitals), cells, tissues and organs. White blood cells, an important part of the immune system, move through the body to search for and destroy intruding germs as well as cells that have already been infected by these germs. The virus takes over and tricks the CD4 cells (a kind of white blood cell) into making more virus copies. This destroys the CD4 cell. If HIV is untreated, over time the number of CD4 cells available to protect the body from infections and illnesses becomes fewer and fewer.

Regular HIV and STI tests are important for one’s health and well-being. The test for HIV involves looking for HIV antibodies in a blood sample. You can get a standard HIV test in which a sample of blood is drawn and sent it away to a lab for analysis, or a rapid test in which a kit is used to analyse the sample on the spot, producing results in five to 30 minutes. HIV tests do not look for the virus itself, but rather for the HIV antibodies that the body makes to try to fight off HIV. It can take up to three months for the body to produce enough antibodies for the test to pick up. Therefore a person living with HIV could have a negative test result during this “window period”.

Do people living with HIV have to practice safer sex if their partner is also living with HIV? Safer sex is always recommended to protect each other from other STIs, especially as HIV can make it easier to catch STIs, make the symptoms of STIs more serious, and make it harder to cure or treat them. There is also a small risk that people living with HIV (PLHIV) can be reinfected with a different strain of HIV which can be harmful to their health if that strain is resistant to the type of antiretroviral treatment (ART) they are taking.

What does treatment do? There are several drugs that treat HIV that are collectively known as antiretrovirals (ARVs). ARVs do not cure HIV. Instead, ARVs make it hard for the virus to create more copies of itself, which gives the body’s immune system a chance to get stronger so that it can better fight off infections and cancers.

What does adherence mean and why is it important? Once on ART, a person living with HIV needs to take their pills exactly as directed; this is called adherence. Taking one’s pills as directed makes sure that the level of ARVs in one’s bloodstream is high enough to keep the virus from making new copies of itself. When the level of ARVs in one’s bloodstream is too low, the virus can figure out how to change and make new copies of itself. If this happens the person can develop a drug resistant strain of HIV, which means that their current treatment will no longer work to treat their HIV. There are only a limited number of antiretrovirals available. Adherence can be difficult. People may have to take several pills a day and each pill may come with its own instructions around time of day and whether to take with food etc. Treatment regimes can be difficult to manage when one is busy, travelling or feeling sick. Some people living with HIV also fear that they will be stigmatized if others see them taking their pills. ARVs can cause unpleasant side effects. Therefore it is important for friends, family and intimate partners to support those they know living with HIV to adhere to their treatment regime and cope with these barriers. Groups of people living with HIV are also an important source of support.

want to know more? www.avert.org www.thebody.com www.aidsmap.com

Love, Life and HIV: Handout 1 Beginners's guide to HIV

Handout

“I am being discriminated secondarily, because at first I was discriminated because of being gay, and now there is this HIV.”

HIV-related Stigma and Discrimination What does stigma and discrimination mean? Stigma is a process of devaluation. This means that people are seen as less normal or less valuable than others. Stigma is often expressed as negative attitudes and prejudice held against people. Discrimination happens when people act on these prejudices and attitudes; it means treating people in ways that lead to some people have less access to opportunities and rights than other people. Stigma and discrimination result from social hierarchies in societies. Within a social hierarchy, certain groups of people are seen to be “normal” and “more valuable” than others. These groups are given more powers and privileges and access to human rights like education, employment, and healthcare. Societies have created social hierarchies for many different categories of human diversity, such as gender, race, ability, and sexual orientation. Some social hierarchies exist in many societies and others are unique to specific societies and historical times. Stigma and discrimination result when social hierarchies are maintained by societies, when people are treated differently when they are the same, and when people are treated the same when they are differences that affect their access to opportunities and rights. Stigma and discrimination can be obvious or be subtle and hard to notice. Stigma and discrimination can happen…

… on an individual level between people (for example, when someone is called names or has rumours spread about them).

… on a systemic level through the policies and practices of organisations, institutions and countries (for example, school policies that say students living with HIV cannot participate in sports).

Self-stigma People who experience stigma and discrimination sometimes internalise the negative attitudes, prejudices and discrimination they face in society. This is known as “self-stigma.” Some expressions of self-stigma are feeling badly about oneself, blaming oneself and/or isolating themselves, or excluding oneself from group activities or social events because one does not feel welcome or fears that they might be stigmatised.

What is HIV-related stigma and discrimination? HIV-related stigma and discrimination refers to negative attitudes, prejudices, and unfair treatment against people that are known or assumed to be HIV-positive. Some expressions of HIV-related stigma and discrimination include physical or social isolation from family, friends and the community (for example, being kicked out of one’s home); being gossiped about or subjected to name-calling, violence or shaming and blaming; and loss of rights, opportunities and decision-making power (for example, being asked to leave one’s school or losing one’s job). Whole families sometimes face HIV-related stigma and discrimination because one of their members has or is presumed to have HIV. Some people living with HIV also experience self-stigma.

Love, Life and HIV: Handout 2 HIV-related stigma and discrimination

Does stigma and discrimination only affect people living with HIV? People experience stigma and discrimination for a variety of reasons. Some common social hierarchies that result in stigma and discrimination are gender, race, ethnicity, religion, sexual orientation, choice of profession, gender identity, citizenship, and physical or mental ability. Some people are affected by several of these social hierarchies at once; for example, someone could be a woman with a physical disability who is attracted to other women. She could be affected by sexism, homophobia and discrimination due to her disability. Social hierarchies often act as fuel for HIV epidemics. For example, homophobia (hatred of people who are attracted to people of the same sex) and heterosexism (the assumption that it is normal to be attracted to people of the opposite sex) result in policies and social attitudes that make it hard for men who have sex with men to take care of their sexual health. Therefore people living with HIV often face double or treble stigma and discrimination, due to their gender, sexuality and HIV status.

What causes HIV-related stigma and discrimination? There are many causes of HIV-related stigma and discrimination. The main causes are: * fear of HIV transmission resulting from lack of knowledge and misconceptions about HIV * fears of death

* moral judgements about issues such as sexuality and drug use * lack of recognition of stigma.

How does stigma and discrimination affect young people living with HIV? Stigma and discrimination are widely recognised as barriers to accessing sexual and reproductive health and HIV services. They can also increase vulnerability and negatively affect access to the necessities of life such as a home and food, to social support, and to opportunities to get an education or earn money for young people living with HIV. Stigma and discrimination can result in hardships that can harm the well-being of young people living with HIV, and leave them vulnerable to depression, anxiety, and problematic coping strategies like substance misuse.

How can communities overcome HIV-related stigma and discrimination? Communities can and do overcome HIV stigma and discrimination to provide inclusive, safe, and supportive environments for people living with and affected by HIV. Safe spaces are needed for people to openly talk about HIV, stigma and discrimination, sexuality and drug use in their community; to explore the root causes of stigma and discrimination in their community; to reflect on how their own words, attitudes and actions may affect people living with and affected by HIV; and to develop action plans to take to create positive change. Learning the facts about HIV and AIDS and challenging conventional wisdom that contributes to inequalities in society are two ways of creating positive change.

Remember: change starts with each one of us!

want to know more?

www.avert.org/hiv-aidsstigma.htm The People Living with HIV Stigma Index www.stigmaindex.org Understanding and challenging HIV stigma: toolkit for action http://bit.ly/iXiTem An educator's guide for changing the world: methods, models and materials for antioppression and social justice workshop http://bit.ly/k1Bfbz The BIAS FREE framework: a practical tool for identifying and eliminating social biases in health research www.globalforumhealth.org

Love, Life and HIV: Handout 2 HIV-related stigma and discrimination

Handout

“In Vani Vilas hospital, I had proper counselling, I had a nice doctor there.”

Accessing Services

What types of services and support do young people need to take care of their health and well-being in a world with HIV? Young people – including young people living with HIV – have the right to information, skills, and services that support them to take care of their health. The type of services and support needed will differ for different young people, depending on a variety of factors, including their overall well-being and sexuality. It is important that service providers recognise and support these differences. Young people need opportunities to learn and develop the ability to make informed choices about how to prevent HIV transmission. Young people living with HIV also need access to a range of non-stigmatising, youth-friendly services that cover their physical, psychosocial and socio-economic needs. These include: Psychosocial support: Young people living with HIV may be faced with issues that can affect their psychological well-being, such as receiving an HIV diagnosis, repeated disclosure of their status, stigma and discrimination, and dating, relationships and sex. Counselling and support programmes that are sensitive to the different realities of young people can help them deal positively with these issues. See also handout 6: Being supported.

Comprehensive sexuality education: Young people living with HIV have the right to enjoyable and fulfilling sexual lives. Young people need opportunities to talk about their roles as sexual partners, their shared responsibility to protect their sexual health and reduce the risk of HIV transmission, and strategies for dealing with disclosure in relationships. See also handout 4: Finding love.

Positive prevention: Young people living with HIV need access to services that will help them live longer and healthier lives. This includes services to protect their sexual and reproductive health and avoid other STIs; delay HIV disease progression; and promote shared responsibility to protect their sexual health and reduce the risk of HIV transmission.

Family planning: Young people living with HIV have the right to decide if and when to have children. They share many of the same family planning needs common among the general population, such as knowing how to avoid unintended pregnancies, how to access contraception, like condoms or emergency contraption, where to have a safe abortions if desired, or how to access antenatal and delivery care if pregnant. Young people living with HIV also have some unique family planning needs like information and services to help them reduce the chances of HIV transmission to their partner or child. Such services are a part of the prevention of mother to child transmission (PMTCT). See also handout 5: Having a family.

Love, Life and HIV: Handout 3 Accessing services

Treatment: Young people living with HIV need youth-friendly information to help them make informed choices about HIV treatment, such as how antiretroviral therapy (ART) works, the importance of adherence and the potential of ART resistance, when to start ART, and where to access ART. Young people living with HIV also need the opportunity to think, discuss and come up with viable strategies and support for overcoming barriers to treatment adherence.

Care: Comprehensive care is vital for the well-being of young people living with HIV, whether or not they are accessing ART. The type of services needed will differ depending on a variety of factors, including the stage of HIV disease progression, but can include diagnosis and management of opportunistic infections, nutritional support, home-based care, social care and legal support. It is critical that care givers from different sectors support young people, especially as they transition from paediatric to adolescent care and from adolescent to adult care.

Education and employment: Young people living with HIV have the right to education and to earn a living. Policies, guidelines and programmes are needed to facilitate the access and participation of young people living with HIV in schools and the work force.

What makes services friendly and accessible for young people? Youth-friendly services are built on the principles of quality and rights. Quality services respond to young peopleâ&#x20AC;&#x2122;s realities, respect their confidentiality, ensure their access to choices, and help them understand their rights. Some ways that services can do this include: training service providers to work competently with and be respectful and sensitive to young people; ensuring services are confidential, non-judgemental, private and available when young people can access them; providing access to services regardless of young peopleâ&#x20AC;&#x2122;s age, marital status, sexual orientation or ability to pay; having an effective referral system is in place; and encouraging young people to get involved in the design, delivery and evaluation of the services. Quality services also means working with the community and duty-bearers such as governments to strengthen support and access to youth-friendly HIV and sexual reproductive health services.

What makes services friendly and accessible for young people living with HIV? HIV-related stigma and moral judgements are a key barrier for young people living with HIV to access services. Health providers and other people providing services to young people need adequate training to understand the issues facing young people living with HIV, the rights of young people living with HIV, and best practices for meeting the needs and respecting the rights of young people living with HIV.

want to know more? Provide: strengthening youthfriendly services http://bit.ly/IPPFprovide Positive prevention: prevention strategies for people living with HIV http://bit.ly/positiveprevention Factsheet: youth-friendly HIV services, a necessity for young people around the world www.worldaidscampaign. org/en/Constituencies/Youth/ Resources Living positively: young people living with HIV and the health sector response www.youthaidscoalition.org/ docs/livingpositively2008.pdf

Love, Life and HIV: Handout 3 Accessing services

Handout

Finding Love

“The biggest challenge was being accepted. When I found out I had HIV, I broke up with my partner and I assumed I would always be alone. I thought it was over... but thank God I found someone that accepts me and is my companion, who supports me, takes care of me and understands me. And I can do the same for him. He is not infected with HIV, yet he is beside me.”

Can young people living with HIV pursue intimate and sexual relationships? All young people – including those living with HIV – have the right to freely choose sex partners and form relationships, and to express their sexuality and seek pleasure. This includes expressing their sexual orientation and gender identity. Living with HIV should not limit the possibilities of young people living with HIV to love and be loved. HIV-related stigma and discrimination can make it hard for young people living with HIV to pursue these rights: many wrongly believe they should not be in intimate or sexual relationships, or can only have relationships with other people living with HIV. Self-stigma can also leave young people living with HIV feeling like no one would want to be in a relationship or have sex with them.

Are young people living with HIV responsible for preventing onward transmission of HIV? A common worry among young people living with HIV is that they may pass HIV to their intimate partner(s). Preventing HIV transmission, other sexually transmitted infections and unplanned pregnancies is a responsibility shared among sexual partners, irrespective of their HIV status. Safer sex and sexual pleasure are easiest to achieve when there is open communication and mutual respect and people understand their body and how to reduce the risks associated with sexual activity.

Must young people disclose their HIV status to the people they date, are in relationships with or have sex with? Disclosure means telling someone else about one’s HIV status. Young people have the right to decide if, when, and how to disclose their HIV status. While many young people living with HIV have find that people to whom they disclose their status become an important source of support, others have faced rejection, discrimination, and violence. Past negative experiences or fears of such experiences can make it difficult for young people to tell their current or potential partner(s) about their HIV status.

What does HIV criminalization mean? Many countries have laws that require that people living with HIV tell their partner(s) about their HIV status before having sex otherwise they may face criminal charges. However, these laws weaken HIV prevention efforts, undermine human rights and fuel HIV-related stigma. Making people living with HIV legally responsible to disclose their status creates a false sense of security. People can wrongly assume that their sexual partner is HIV-negative unless they have disclosed their status and therefore do not practise safer sex. Most HIV transmissions are unintentional, especially as lots of people do not know whether they are living with HIV or not. Fear of being criminalized also reduces the likelihood of people wanting to be tested for HIV.

How can young people living with HIV be protected from being criminalized for transmission or exposure to HIV? Young people can protect themselves from being criminalized by knowing the laws in their country; disclosing their status before sexual activity (if possible); taking steps to reduce the chances of transmission of HIV to their partner(s) and/or children; and having “proof” that they have disclosed (such as their partner accompanying them to medical appointments). Young people can also stand up for the rights of people living with HIV by getting involved in organisations seeking to change these laws.

Love, Life and HIV: Handout 4 Finding love

want to know more?

Healthy, happy and hot: a young person’s guide to their rights, sexuality and living with HIV http://bit.ly/healthyhappyhot Girls decide: what do I do if I am living with HIV and… http://bit.ly/girlsdecideHIV Exclaim! Young people's guide to Sexual Rights: An IPPF Declaration http://bit.ly/IPPFexclaim 10 reasons to oppose the criminalization of HIV exposure or transmission www.icaso.org/resources/ 10reasons_20081201.pdf 10 reasons why criminalization of HIV exposure or transmission harms women www.athenanetwork.org/ index.php?id=39 Verdict on a virus: public health, human rights and criminal law http://bit.ly/verdictonavirus Criminalize hate not HIV http://bit.ly/criminalization HIV and the criminal law www.aidsmap.com/law The criminalisation of HIV factsheet http://bit.ly/criminalisationFS

Handout

“My plans for the future are really positive and optimistic. I want to become a father, I have a wonderful wife and we are planning to live a long-long life together.”

Having a family

Can young people living with HIV have children? Young people living with HIV can live long and healthy lives when they have access to antiretroviral therapy and other services to support their health and well-being. Many young people living with HIV can and do have healthy families. Some young people living with HIV are pressured by health providers, family members and other people not to have children. A few are even forced to have an abortion or be sterilised. This is a form of HIV-related stigma and discrimination, and violates the right of young people living with HIV to have children and form families. All young people – including young people living with HIV – have the right to choose if, when, how and with whom to have children. No one should pressure young people living with HIV either to have or not have children.

Can young people living with HIV have babies without their partner or baby becoming infected? The risk of passing HIV to one’s partner or their children is very small when the right precautions are taken during conception, pregnancy, birth and the first years of their child’s life. It is important for young people living with HIV to work with their partner and health provider to plan a strategy for safer conception, and to use services for antenatal care (ANC) and prevention of mother to child transmission (PMTCT) during pregnancy and following the birth of their child. There are four elements of PMTCT services, these are:

1. Preventing HIV transmission among women of reproductive age 2. Supporting women living with HIV avoid unintended pregnancies 3. Reducing the risk of HIV transmission to the child during pregnancy, birth and infancy 4. Providing appropriate treatment care and support to mothers living with HIV and their children and families.

want to know more?

What happens if HIV is passed to a baby? Children living with HIV can lead long and healthy lives when they have access to appropriate health care, antiretrovirals, other medicines, good nutrition and have a supportive home environment. As part of PMTCT services, babies born to mothers living with HIV are regularly tested to ensure that, if they are living with HIV, this is diagnosed early so they can receive antiretrovirals and other medical treatment to look after their health.

How does living with HIV affect families and parenting? Parents living with HIV face many of the same issues as other parents. All parents are responsible for providing their children with the best care and opportunities possible, and taking steps to plan for their children’s future (for example, writing a will and appointing a guardian). Parents living with HIV also face unique issues like worrying that their child has HIV, coping with HIV-related stigma, and managing their own or their child’s treatment regime. Many people living with HIV networks include support groups that can help families affected by HIV cope with these issues. Communities can support families affected by HIV by working together to overcome HIV-related stigma, to increase access to HIV treatment and services (including paediatric treatment and services), and to promote the inclusion and participation of all children and parents.

Love, Life and HIV: Handout 5 Having a family

Handout

Being supported

“It’s nice when you have one of those days, one of those rainy days when you think back, and there is someone by your side who goes like, “I’m here for you”. I have friends that I go out with, I have friends that I have in my life and just that presence in my life means a lot.”

Why is support important? All people – including people living with HIV – tend to be healthier and have a greater sense of well-being when they have support from and are respected by their family, friends, communities, service providers and others. Support can help people solve problems, overcome adversity, feel like they are in charge of their life, and feel loved and cared for.

Why do young people living with HIV need support? Living with HIV can be stressful and can affect people’s physical and psychosocial well-being. Young people living with HIV are often confronted with challenges in addition to the usual worries surrounding growing up and puberty. When people find out they are living with HIV, they may experience strong feelings such as fear, confusion, shame, blame and anger. They may be worried about getting sick or transmitting the virus to other people. They may be unsure what their HIV status will mean for their ability to realise their life dreams around relationships, sexuality, education and their career. Young people living with HIV might have to figure out how to do many new things like finding health workers who are caring and respectful, accessing treatment and care services, and on numerous occasions deciding how and when to disclose their HIV status. Adhering to treatment regimes is critically important for the overall well-being of young people living with HIV in need of antiretroviral treatment. Often, they will need support to overcome barriers to treatment adherence, especially in challenging contexts such as boarding schools. They may also be dealing with real or feared stigma and discrimination in their school, workplace, family and community. Support from friends, families, health workers and others can help young people find ways to cope with and manage these difficulties in positive ways. Without adequate support, young people living with HIV may be prone to anxiety or depression, which in some cases may lead to a dependency on alcohol and drugs.

What are some sources of support for young people living with HIV? Many people provide support to young people living with HIV: family members, friends, romantic partners, peers, and colleagues, among others. Young people also look for support from professionals and organizations in their community, such as teachers and school counsellors, faith communities, youth centres, and health providers. Many young people living with HIV find that people living with HIV networks and online spaces for positive people are an important source of support. Working with other people living with HIV to overcome common obstacles can also help to increase a young person’s sense of control over and purpose in their life.

What are some ways that people and communities can support young people living with HIV? When a young person turns to someone for support, they are looking for someone who will listen to them, respect their privacy and, if requested, provide practical, sensible and reliable advice. The foundation for being supportive is acceptance, respect, care, and compassion. Your support and advice is more likely to be helpful to a young person living with HIV if you have taken steps to educate yourself about HIV and overcome your own prejudices around HIV and the behaviours that led to HIV transmission. It is very important that you do not tell other people about someone else’s HIV status or other issues they have shared, unless they ask you to share it or you are required to report the information by law (for example, a minor is being sexually exploited). Being supportive also means having fun together, being available when the person is sick or feeling down, and accompanying the person to difficult appointments if requested. Love, Life and HIV: Handout 6 Being supported

want to know more? www.myhiv.org.uk www.safaids.net/category/ thematic-focus-areas/support-0 www.i-base.info http://gnpplus.ning.com

Handout

Getting involved

“I have taken the acronym AIDS and turned it into a question 'Am I Doing Something’? Since I know that I’m HIV-positive, what is it that I’m doing in my community? What is it that I’m doing for young people who are living with the very same virus that I am? Just get involved in things that will help to empower other young people.”

Why is it important to involve young people living with HIV in HIV responses? Young people have the right to participate in matters that affect their lives. Youth participation is recognized in international commitments related to the HIV epidemic, such as the 2001 UNGASS Declaration of Commitment. The importance of the participation of people living with HIV (PLHIV) in HIV responses is also widely recognized. It is enshrined in the Principle of Greater Involvement of People Living with HIV (GIPA) from the 1994 Paris Declaration.

GIPA and MIPA GIPA stands for the greater involvement of people living with HIV. Some people use the acronym MIPA (meaningful involvement of people living with HIV) instead of GIPA to emphasize that people living with HIV must not only be present but must be actively involved and be able to influence small and large decisions about programmes, policies, and services.

There are also several practical reasons for involving young people living with HIV in HIV policies and programmes that affect their lives: * Involving young people living with HIV contributes to more effective HIV responses. Policies, programmes, and services are more likely to reflect the needs of and be accessible to young people – including those living with HIV – when young people living with HIV have a say in how they are set up and run. * Visibility decreases HIV-related stigma and discrimination, which creates more supportive communities and increases demand for HIV services among young people. * The young people living with HIV who are involved benefit from being engaged, including by having opportunities to make new friends; developing a sense of purpose and empowerment; increasing one’s employability with new knowledge and skills; and learning more about living openly with HIV.

How can young people living with HIV get involved in HIV responses? PLHIV networks, sexual and reproductive health and rights organisations, youth groups, faith-based organisations, and others can involve young people living with HIV in their efforts to promote sexual health, prevent HIV, and provide treatment, care and support. There are many ways to involve young people living with HIV, including as: * Volunteers, advisors and staff in the design, delivery and evaluation of policies, programmes, and services for PLHIV and young people. * Members of governance bodies for HIV and youth sexual and reproductive health organisations. * Peer workers in research projects, support groups, home-based care, education and outreach programmes. * Advocates and activists, for example against laws/policies that prohibit young people’s access to services, such as the need for parental consent for people under 18.

Love, Life and HIV: Handout 7 Getting involved

want to know more? Y+ Programme http://bit.ly/Yplus Positive Community http://gnpplus.ning.com It’s all one curriculum: guidelines and activities for a unified approach to sexuality, gender, HIV and human rights education (module 8) www.ippfwhr.org/en/ allonecurriculum_en Good practice guide: greater involvement of people living with HIV (GIPA) http://bit.ly/AllianceGIPA Youth participation guide: assessment, planning, and implementation http://bit.ly/l6913u Meaningful involvement of people living with HIV and affected communities www.hivcode.org/silo/files/ final-mipa-.pdf

References

Burke, MS and Eichler, M. (2006) The BIAS FREE framework: a practical tool for identifying and eliminating social biases in health research. Global Forum for Health Research. Canadian AIDS Treatment Information and Exchange (CATIE) (2009) Managing your health: a guide for people living with HIV. Toronto, Ontario. CREA, Girls Power Initiative, International Planned Parenthood Federation (IPPF), International Women’s Health Coalition (IWHC), Mexfam, and Population Council (2010) It’s all one curriculum: guidelines and activities for a unified approach to sexuality, gender, HIV and human rights education. Inter-Agency Task Team on HIV and Young People (IATT) (2008) Global guidance briefs: HIV interventions for young people in the education sector. Geneva, UNAIDS. International HIV/AIDS Alliance and the Global Network of People Living with HIV (GNP+) (2010) Good practice guide: greater involvement of people living with HIV (GIPA). UK. International Planned Parenthood Federation (IPPF) (2010) Healthy, happy and hot: a young person’s guide to their rights, sexuality and living with HIV. UK. International Planned Parenthood Federation (IPPF) (2010) Positive prevention: prevention strategies for people living with HIV. International Planned Parenthood Federation (IPPF) (2008) Provide: strengthening youthfriendly services. UK. John Snow International and Southern African HIV/AIDS Information Dissemination Service. (2004) A future planning notebook for families and communities for the support of orphans, widows, widowers, and the guardians of minor children. www.safaids.net/files/Future_Planning_Booklet.pdf Kidd, R., Clay, S., and Chiiya, C. (2007) Understanding and challenging HIV stigma: toolkit for action UK: Academy for Educational Development, International Center for Research on Women and International HIV/AIDS Alliance. Ontario Public Health Association (forthcoming) Youth engagement toolkit – working with middle school students to enhance protective factors and resiliency: a resource for health professionals working with young people. Toronto. The Body (Accessed May 2011) www.thebody.com Terrence Higgins Trust (Accessed May 2011) www.myhiv.org.uk

Love, Life and HIV: References