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Report
08 Январь 2020
Interpersonal Communication for Immunization
https://www.unicef.org/eca/reports/interpersonal-communication-immunization
Health providers have always been an important and trusted source of information for parents and caregivers in the Europe and Central Asia (ECA) region and beyond. The way they interact with families and the quality of their communication and engagement may have a positive or negative influence on caregivers’ decision to immunize their children. Research in ECA has shown that health workers do not always engage with caregivers in an open and supportive way, often using a patronizing and top-down approach in communication. As a result of time constraints and limited communication capacities, they often fail to understand the immunization-related concerns, fears and expectations of caregivers and fail to identify and address vaccine hesitancy. To help strengthen the communication and community engagement skills of front-line workers, the UNICEF Regional Office for Europe and Central Asia (ECARO) has developed this interactive and evidence-based training package to identify and address their own biases and misconceptions and to equip them with the essential knowledge, skills, and attitudes they need for positive and meaningful interpersonal communication. It consist of a Facilitator Guide, Participant Manual and a set of Presentations. Options Available options Facilitator guide Participant manual Presentation Download file (PDF, 5,62 MB) (PDF, 5,57 MB) (PDF, 11,88 MB) November 2019
Report
06 Ноябрь 2019
Interpersonal Communication for Immunization. Presentation
https://www.unicef.org/eca/reports/interpersonal-communication-immunization-presentation
Health providers have always been an important and trusted source of information for parents and caregivers in the Europe and Central Asia (ECA) region and beyond. The way they interact with families and the quality of their communication and engagement may have a positive or negative influence on caregivers’ decision to immunize their children. Download file (PDF, 11,88 MB) November 2018
Report
06 Ноябрь 2019
Interpersonal Communication for Immunization. Participant manual
https://www.unicef.org/eca/reports/interpersonal-communication-immunization-participant-manual
Good interpersonal communication can mean the difference between a child being fully immunized or not at all. This Interpersonal Communication for Immunization Participant manual seeks to help health workers value, acquire, and consistently use the knowledge, skills, and attitudes needed to communicate effectively with caregivers and communities about childhood immunization. Interpersonal communication for immunization capacity development is critical. Almost every study of health worker practices in the region finds that interpersonal communication for immunization overall is weak. Yet, at the same time, the vast majority of caregivers of young children cite health workers as their primary source of information about immunization. Health workers and health services must close this gap if nations and the world are to achieve universal immunization.  Download file (PDF, 5,57 MB) November 2019
Report
06 Ноябрь 2019
Interpersonal Communication for Immunization. Facilitator Guide
https://www.unicef.org/eca/reports/interpersonal-communication-immunization-facilitator-guide
Health providers have always been an important and trusted source of information for parents and caregivers in the Europe and Central Asia (ECA) region and beyond. The way they interact with families and the quality of their communication and engagement may have a positive or negative influence on caregivers’ decision to immunize their children. Research in ECA has shown that health workers do not always engage with caregivers in an open and supportive way, often using a patronizing and top-down approach in communication. As a result of time constraints and limited communication capacities, they often fail to understand the immuni-zation-related concerns, fears and expectations of caregivers and fail to identify and address vaccine hesitancy. To help strengthen the communication and community engagement skills of front-line workers, the UNICEF Regional Office for Europe and Central Asia (ECARO) has developed this interactive and evidence-based training package to identify and address their own biases and misconceptions and to equip them with the essential knowledge, skills, and attitudes they need for positive and meaningful interpersonal communication. Download file (PDF, 5,62 MB) November 2019
Report
28 Октябрь 2020
Protecting young children from vaccine-preventable diseases
https://www.unicef.org/eca/reports/protecting-young-children-vaccine-preventable-diseases
PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES MODULE 22 Disclaimer: The resource modules were authored by the individuals under the guidance of the UNICEF Regional Office for Europe and Central Asia. The text is presented in draft format and it is expected that it will be adapted and contextualized for use by interested countries. The material has not been edited to official publication standards. UNICEF accepts no responsibility for errors. The designations in this publication do not imply an opinion on legal status of any country or territory, or of its authorities, or the delimitation of frontiers. Coordination and Editing: Aleksandra Jovic, UNICEF, Early Childhood Development Specialist Lead Author: Bettina Schwethelm, Young Child Health and Development Specialist, Director, MCH-ECD Co-authors: Svetlana Stefanet, UNICEF, Immunization Specialist Sergiu Tomsa, UNICEF, Communication for Development Specialist Contributors: Silvia Sanchez R., UNICEF, Knowledge Management Consultant Viviane Bianco, UNICEF, Communication for Development Consultant UNICEF/ Krepkih Andrey TABLE OF CONTENTS Key Messages Why is this Topic Important to you? ..................................................................................6 Learning Outcomes ....................................................................................................................................6 Pre-Test for this Module ...............................................................................................................................7 Glossary and Definitions ............................................................................................................................10 I. Introduction ..................................................................................................................................111. Nurturing Care A Holistic Approach to Young Child Health, Development and Wellbeing ................................112. Vaccination Trends Globally and in Europe ...........................................................................................................143. Working with Families to Protect Young Children from Vaccine-Preventable Diseases Module Overview and Summary ..........................................................................................................................15 II. Immunization and Vaccine Preventable Diseases A Major Public Health Achievement ...................161. Childhood Immunization .......................................................................................................................................162. How Vaccines Work .............................................................................................................................................173. The Benefits of Vaccination to the Individual Child and Society ...........................................................................204. Vaccine Safety and Side Effects ...........................................................................................................................225. Family-Held Vaccination Records ..........................................................................................................................23 III. Understanding Barriers to Vaccination ...............................................................................................241. Caregivers Along the Continuum of Vaccine Acceptance, Hesitancy, and Rejection ...........................................242. Understanding how Individuals Make Behavioural Choices .................................................................................26 a. The Behaviour Change Journey ........................................................................................................................26b. Factors Influencing Caregiver Decisions ...........................................................................................................27c. Perception Biases, Beliefs, and Myths About Vaccines The Internet and Social Media ................................31d. The Role of Health Workers ..............................................................................................................................34 IV. Communication Skills and Tools to Support Vaccine Acceptance by Caregiver .................................371. Active Listening Skills ...........................................................................................................................................37 a. Verbal Communication ......................................................................................................................................37b. Non-Verbal Communication ..............................................................................................................................38c. Empathy ............................................................................................................................................................39 2. Working with Caregivers Along the Continuum of Vaccine Hesitancy .................................................................39a. Vaccine-Accepting Families ...............................................................................................................................40b. Vaccine-Hesitant Caregivers .............................................................................................................................41c. Vaccine Refusers and Anti-Vaccine Advocates .................................................................................................44 3. Helping Caregivers Overcome Barriers to Vaccination .........................................................................................46a. Preparing Caregivers for Vaccination and Helping Them Manage Mild Side-Effects ........................................46b. Helping Caregivers Problem-Solve ....................................................................................................................46c. Addressing Rumours in the Community ...........................................................................................................47 V. Summary of Key Points and Post-Test .................................................................................................481. Summary of Key Points ......................................................................................................................................482. Post-Test with Answers ......................................................................................................................................49 VI. Websites And Video Clips .....................................................................................................................531. Websites .............................................................................................................................................................532. Relevant Video Clips ...........................................................................................................................................53 Annexes: Information Cards ........................................................................................................................55Information Card 1 - Common Vaccine-Preventable Diseases ...........................................................................................55Information Card 2 - Frequently Asked Questions (FAQS) About Childhood Vaccinations .................................................58Information Card 3 - Simple Ways to Show Empathy ........................................................................................................62Information Card 4 - Responses that Encourage Communication ......................................................................................63Information Card 5 - Roadblocks to Communication ..........................................................................................................64Information Card 6 - Practical Communication Skills Case Study ....................................................................................65Information Card 7 - The CASE Approach ...........................................................................................................................66Information Card 8 - Steps to Address Negative Rumours in the Community ...................................................................67Information Card 9 - Reducing Pain ....................................................................................................................................68Information Card 10 - What is Community or Herd Immunity and Why is it Important? ....................................................70 Worksheets................ ..................................................................................................................................71 References................. ..................................................................................................................................73 6 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES KEY MESSAGES Why is this topic important to you? Vaccination is one of the worlds safest and most cost-effective public health interventions. Yet growing distrust in science, coupled with misinformation, means that vaccination coverage rates are declining in some countries and communities, resulting in an upsurge of vaccine-preventable diseases. The routine vaccination schedule brings families into frequent contact with the healthcare system, providing opportunities to reach children with life-saving vaccines and other crucial services for children and their families. Research shows that those caring for children tend to trust the advice of their health workers when it comes to vaccination, despite conflicting and often misleading information from other sources. That is why your role is so important: poor or disrespectful responses to caregivers and their concerns, coupled with a lack of uptake of vaccines (whether at a clinic or during a home visit), can have a strong and negative impact not only on their future demand for vaccination, but also for a whole range of other health services. As a professional who is trusted by the families you serve, you have a unique opportunity to identify vaccine-hesitant caregivers; understand their fears, dilemmas and choices; provide them with relevant information; help them overcome their vaccination hesitancy; strengthen their confidence in vaccines and immunization, and, in some instances, vaccinate their children. Using your communication skills and your knowledge about how individuals make behavioural choices, you can influence and guide parents to make decisions in the best interests of their children by listening to and understanding their concerns, providing answers to their questions, and helping them make the best choice for their child and their community. LEARNING OUTCOMES Once you have completed this module you will: Have a good understanding of vaccine-preventable diseases and the importance of immunization. Understand the role of health workers particularly home visitors in guiding families in their decisions to have their children protected against vaccine-preventable illnesses. Understand the importance of checking the immunization status of the child during each relevant visit and reminding caregivers about upcoming vaccination appointments. Understand that the views of caregivers range across a continuum from vaccine acceptance, to hesitancy and rejection, and that tailored approaches and actions are required from you to ensure that as many infants and children are protected against vaccine-preventable diseases as possible. Be able to apply evidence-based techniques and approaches to address hesitancy and influence caregivers decisions and behaviours. When checking a childs records, know how to give their caregivers the space to voice concerns and ask questions so that you can provide facts about vaccination benefits and address rumours and misinformation. Know how to identify caregivers who are hesitant about vaccines and respond to their questions and concerns with facts and empathy to help them make informed decisions and move towards vaccination. Communicate with caregivers who are rejecting vaccines in a respectful and empathetic way, reminding them that vaccines are safe, advising them of the dangers and symptoms of vaccine-preventable diseases, and reinforcing their responsibilities, as caregivers, to inform health workers if their child has not been vaccinated. Show your appreciation and validation of families that have accepted vaccination and that might be willing to become vaccine advocates in your community. Be able to advise parents on how to deal with the possible common side effects of vaccination. 7 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES PRE-TEST FOR THIS MODULE Some of these questions may refer to topics that are unfamiliar to you at this early stage, but do not worry. The module will cover all of these issues and features a post-test (with answers) at the end so that you can assess your own progress. 1. Costing studies have shown that childhood vaccinations constitute one of the most cost-effective public health interventions. True False 2. The number of parents refusing vaccinations for their infants and young children is increasing. This group should, therefore, be the main target for education by home visitors. True False 3. Increasing herd/community immunity is not a good argument for increased support for immunization programmes. True False 4. Several countries in Europe have had a high number of measles cases. Some of the reasons for this include (please mark all answers that apply): a. Shortages of measles vaccine in these countriesb. Caregivers who are complacent, because they do not know that measles is a dangerous and very infectious diseasec. Researchers who have been unable to dis-prove the myth that measles vaccine causes autismd. Measles brought in by travellers from poor, under-developed countriese. Falling immunization coverage. 5. The reason for vaccine hesitancy is simple: caregivers just lack the evidence about the benefits of vaccines. True False 6. Some of the strategies to overcome vaccine hesitancy among parents include (please mark all answers you consider correct):a. Improving the interpersonal and communication skills of health workersb. Listening to the concerns of caregivers and showing empathyc. Understanding how behaviour change takes place and using a solid behaviour-change approachd. Ensuring that health workers welcome caregivers who may feel socially excluded and stigmatizede. Telling caregivers that health professionals know best and that they should not question immunization, as they are not expertsf. Improving the quality of health services. 7. Some of the challenges to the achievement of high immunization coverage rates for measles and rubella coverage (please circle the answers you consider correct)a. The rejection of vaccines by some families in small communities and urban areas creates pools of unprotected children, increasing the risks of the rapid spread of epidemicsb. Measles vaccine is routinely provided to children when they are one year of age: a time when some caregivers may feel that their young children have already received enough vaccines to be protected MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 8 c. Lack of trust in vaccine safetyd. Shortage of vaccines in some countries as a result of recent epidemics. 8. Home visitors should be prepared to respond flexibly to the concerns of parents about vaccinations, with brief, tailored and fact-based elevator speeches (short enough to be presented during an elevator ride of just a few floors). True False 9. Polio has been eradicated and will soon be removed from all immunization schedules. True False 10. Arrange the following stages into the correct sequence for an expanded behaviour-change model: 11. List some non-verbal communication features you can use to make caregivers feel more comfortable: 12. Giving young infants multiple vaccines at the same time can overwhelm their immune system. True False 13. Naturally acquired immunity works better and is safer than vaccine-acquired immunity. True False 14. The following approaches need to be avoided when addressing the concerns of caregivers about vaccines (mark all that apply): a. Reflective listeningb. Solving any problems the caregiver has in getting to the clinicc. Empathy for their concerns about whether they are making the best decision for their childd. Praising them by telling them that they are your best parents and that you are so proud of theme. Rebuking caregivers for missing vaccination appointmentsf. Reminding caregivers that they are not experts and should not question immunization. Stages Step Decision Advocacy Pre-contemplation Maintenance Preparation Contemplation Trigger Fine-tuning Trial 9 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 9 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 15. Caregivers who refuse vaccines are likely to include individuals with some of the following characteristics (mark all that apply)a. They are from marginalized populationsb. They question science and are often highly educated c. They come from poor and uneducated families in urban areasd. They dont trust their health care system or health workers. 16. The three Cs are (mark all that apply) Complacency Concern Convenience Confidence. 17. Vaccination programmes are expensive because of the costs of vaccines, cold-chains and the salaries needed to deliver so many vaccines to so many children. It is an important public health intervention, but not very cost-effective. True False 18. 18. Measles is so dangerous because (mark all that apply)a. The disease kills most unvaccinated children because the vaccine only starts working when a child is around two years oldb. It is so infectious that herd community cannot be achievedc. It can wipe out much of the immune memory that a young child had acquired before contracting measlesd. Survivors of measles have an increased likelihood of death in the 2-3 years after contracting the diseasee. The infection spreads rapidly when a group of unvaccinated individuals is exposed to a case of measles. 19. There are no good sources of credible information about vaccines and vaccine safety. True False 20. Vaccine rejectors have a responsibility to inform health workers that their child has not been protected against vaccine-preventable diseases and should know about the signs and symptoms of these diseases. True False 21. While vaccination contributes primarily to Sustainable Development Goal 3 (SDG 3) on good health and wellbeing by reducing the number of vaccine-preventable deaths, it also contributes indirectly to many other SDGs. True False 10 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 10 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES GLOSSARY AND DEFINITIONS Caregiver. The parent or primary guardian of the child. This module uses the terms parent and caregiver interchangeably, recognizing that while most children are cared for by their parents, this is not always the case. For the purposes of this module, the terms parent or caregiver refer to the adults responsible for children and who make critical decisions on their behalf around immunization. Closed questions. Questions that are generally answered with a simple yes or no, in contrast to open-ended questions that encourage the other person to elaborate on their answer and encourage a genuine, two-way dialogue. Empathy. The capacity to understand or feel what another person is experiencing from their point of view, i.e. putting yourself in their shoes. This contrasts with sympathy, which often conveys pity for someone else, but not necessarily an understanding of their situation. European Centre for Disease Prevention and Control (ECDC). EU agency aimed at strengthening Europes defenses against infectious diseases. The core functions cover a wide spectrum of activities: surveillance, epidemic intelligence, response, scientific advice, microbiology, preparedness, public health training, international relations, health communication, and the scientific journal Eurosurveillance.1 Herd/community immunity. It is achieved when the vast majority of a population (at least 95% of children for childhood vaccination) is vaccinated, ensuring the protection of the whole community, including individuals who have not been vaccinated. Immunization. The process by which a person develops resistance to an infectious illness, usually through the application of a vaccine. Interpersonal communication. The exchange of information, thoughts, and feelings both verbal and non-verbal between two or more people that leads to dialogue, mutual understanding, respect for different perspectives and positions and immediate feedback. It can take place in a face-to-face setting or via video or audio settings by phone or Internet. MMR. Measles-mumps-rubella vaccine. Vaccination. Act of introducing a vaccine into the body to produce immunity to a disease. Vaccine hesitancy (WHO, 2019). The reluctance or refusal to vaccinate despite the availability of vaccines. Vaccine hesitancy is complex and context-specific, varying across time, place and vaccines, and is influenced by multiple factors, such as complacency, convenience and confidence. 1 European Centre for Disease Prevention and Control. https://www.ecdc.europa.eu/en/about-ecdc https://www.ecdc.europa.eu/en/about-ecdc 11 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES IINTRODUCTION 1. Nurturing Care A Holistic Approach to Young Child Health, Development and Wellbeing Recent decades have seen a surge of research on neuroscience and child development that has identified what newborns and young children need to survive, thrive, and lead healthy and productive lives. In May 2018, this critical body of scientific knowledge was brought together and used to create the Nurturing Care Framework by the World Health Organization (WHO), UNICEF, the World Bank and other partners. Compelling and robust scientific evidence was translated into five easily understandable and mutually supporting components that are essential for children to thrive (also shown in Figure 1): Good health Adequate nutrition Opportunities for early learning Responsive caregiving, and Security and safety. G OOD HEAL TH ADEQUATE NUTRITION G O PP UR TU NIT IES FO R E ARLY LEARN ING SECURITY AND SAFET Y R ESPO NSIV E C AR EG IVIN G Components of nurturing care Figure 1. The Nurturing Care: five interconnected components UNICEF/Kudravtsev 12 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES To survive, thrive and reach their full developmental potential, infants and young children need all five components of the Nurturing Care wheel. The components are not stand-alone, nor do they work as additions to each other: they are indivisible and synergistic. Responsive caregiving, for example, creates an enabling environment that can safeguard the other components: that is, a caregiver who is responsive to a child will be able to detect early signs that the child is feeling ill, tired, overwhelmed, anxious or threatened and will be able to respond in a way that protects the childs wellbeing. Similarly, a responsive caregiver is sensitive to the signs that a child is feeling well, alert, and ready to play and explore, and will be able to respond with appropriate activities. While parenting is perhaps the most challenging task for any adult, measures and support to prepare people for parenthood and education in parenting are more often available in high-and middle-income countries. Where such support is available in low-income countries, it tends to be accessed most frequently by high- and middle-income families. Families in many countries in the Europe and Central Asia region are fortunate to benefit from universal health care and home-visiting services provided by the public sector during the critical times of pregnancy and the first few years of a childs life. While the number of visits provided to all families is often limited, home visiting can be an effective entry point and opportunity to provide reliable and valid information and advice on child development, child rearing and parenting. Universal home-visiting services can also be used to identify families that are vulnerable or that need additional and targeted services. Providing all families with trusted and evidence-based information and advice and identifying the families with additional needs require knowledge and special skills in working with families from all walks of life to build a genuine and supportive partnership. About the resource package for home visitors and its modules The resource package for home visitors Supporting Families for Nurturing Care is a growing set of training modules (see Figure 2). It aims to strengthen the knowledge of home visitors on the key components of Nurturing Care, and enhance their skills in working with families to enable and empower them to provide the best start to their children. While targeting home visitors, many of these modules are also suitable for other health and non-health professionals who interact with pregnant women and the families of young children. Each of the modules responds to one or more components of Nurturing Care and builds capacity and skills needed by the home visitor to provide supportive home visits. In addition, each module aims to help home visitors reflect on professional attitudes and strengthen practices to engage inclusively and respectfully families that are diverse and face different needs and challenges. The modules have been developed by well-known experts and can be translated and adapted to different country contexts. In some countries, the modules have already become a mainstay of lifelong learning and continuing professional development for health workers and social-service providers engaged in promoting the comprehensive wellbeing of young children and their families. You can find hard copies of all modules on the International Step by Step Association (ISSA) website at https://www.issa.nl/modules_home_visitors and on UNICEF Agora. UNICEF/Voronin https://www.issa.nl/modules_home_visitors 13 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES Knowledge Module 1: The Early Childhood Years - A Time of Endless Opportunities Module 7: Parental Wellbeing Module 11: Working against Stigma and Discrimination - Promoting Equity, Inclusion and Respect for Diversity Module 12: Children Who Develop Differently - Children with Disabilities or Developmental Difficulties Module 18: Gender Socialisation and Gender Dynamics in Families - The New Role of the Home Visitor Skills Module 2: The New Role of the Home Visitor Module 10: Caring and Empowering - Enhancing Communication Skills for Home Visitors Module 13: Developmental Monitoring and Screening Module 15: Working with Other Services Module 17: Supervision - Supporting Professionals and Enhancing Service Quality Module 22: Protecting Young Children from Vaccine-Preventable Diseases Figure 2. The Supporting Families for Nurturing Care resource package and its modules (asterisks indicate complementary pre-existing training packages) Components of nurturing care Thinking Healthy*Care for Child Development*Module 4: Falling in Love - Promoting Parent-Child AttachmentModule 5: Engaging Fathers Module 8: Common Parenting Concerns Integrated Management of Childhood Illnesses (IMCI)*Module 20: Healthy Weight, Physical Activity, Sleep and Sedentary TimeModule 21: The Care of Small and Sick NewbornsModule 22: Protecting Young Children from Vaccine-Preventable Diseases Module 6: The Art of Parenting - Love, Talk, Play, ReadModule 19: Early Childhood Education Programmmes Module 9: Home Environment and SafetyModule 14: Keeping Young Children Free from Violence, Abuse and Neglect Infant and Young Child Feeding (IYCF)*Baby-friendly Hospital Initiative (BFHI)Module 16: Responsive Feeding G OOD HEALT H ADEQUATE NUTRITIO NG OPP UR TU NIT IES FO R E ARLY LEARN ING SECURITY AND SAFET Y RE SPO NS IVE C AR EG IVIN G 14 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 2. Vaccination Trends Globally and in EuropeSince the development of the first vaccination against smallpox more than a century ago, vaccine programmes for children have become an integral component of preventive primary health care in every country on earth. Vaccination programmes prevent between 2 and 3 million deaths globally each year (WHO, 6.12.2019). In 2019, about 86 per cent of infants worldwide (116.3 million infants) received 3 doses of diphtheria- tetanus-pertussis (DTP3) vaccine, protecting them against infectious diseases that can cause serious illness, disability or death. Individuals and governments benefit from vast cost-savings as a result of the prevention of illness (EU and WHO, 2019). Based on the costs of illnesses, including treatment costs and productivity losses, that have been averted, every dollar invested in vaccines during the Decade of Vaccines (2011-2020) is estimated to have yielded a net return of about $16 (Ozawa et al., 2020). Two of the three strains of wild polio virus strains have been eradicated. A growing number of countries have achieved disease-free certifications (i.e. the European region has sustained its polio free status since 2002). The growing number of combination vaccines (i.e. the child is vaccinated against several diseases with one injection) is reducing the number of injections needed. In recent years, however, vaccination programmes have become victims of their own hard-earned success: few caregivers remember epidemics of polio, measles, pertussis or chickenpox that took the lives of many children, left many more with disabilities, and undermined their health and development. They may be unaware that measles is one of the worlds most contagious diseases, and that its transmission can only be halted if at least 95 per cent of the population is protected by immunization. In addition, misinformation that links vaccines to autism is easy to find and continues to circulate through social media and on websites, despite being discredited repeatedly, including by large-scale population studies (Hviid et al., 2019). Misinformation is sometimes disseminated deliberately to contradict (and appear alongside) evidence-based information about the benefits of vaccination. As a result of such challenges, countries around the world, and particularly in the Europe and Central Asia Region, have seen a resurgence of measles as the number of unprotected children and adults has grown. Measles cases have reached their highest level in Europe in 20 years (The Guardian, 21.12.2018). In total, 49 of the 53 countries in WHO European Region reported more than 192,943 measles cases and more than 100 measles-related deaths between 1 January 2018 and 31 December 2019, with a regional coverage with 2 doses of measles vaccination of only 91 per cent for the two doses of measles vaccination, which is too low to ensure herd immunity. Large disparities at the local level persist: some communities report over 95% coverage, and others below 70%. Several countries in the region Albania, the Czech Republic, Greece and the UK have recently lost their measles free certification. In the absence of disease, fear of disease has been replaced by fear of vaccines for some people (WHO, 2017). UNICEF/Bershadskyy Yuriy Immunization is one of the most cost-effective ways to save lives and promote good health and well-being. Every year, vaccines save 2-3 million lives, and millions more are protected from disease and disability. It routinely reaches more households than any other health service and brings communities into regular contact with the health system. This provides an effective platform to deliver other primary health care services and upon which to build universal health coverage. (Gavi The Vaccine Alliance, 2019) 15 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 3. Working with Families to Protect Young Children from Vaccine-Preventable Diseases Module Overview and Summary UNICEF/ Krepkih Andrey Because of the frequency of the contact required with families, especially during the early months of a childs life, the quality of immunization services can either enhance or endanger the trust families place in health care services and professionals. As a health visitor for families with young children, you are in a unique position to educate the families you meet on the importance of vaccines and the vaccination schedule and identify caregivers who have some concerns or who may even reject vaccines. In their own home, and when talking to someone the family trusts their home visitor caregivers may feel more comfortable asking questions and voicing fears that have not been addressed during crowded vaccination sessions or in a busy doctors office. Your knowledge of the benefits and safety of vaccines, your communication skills and empathy for families, and your understanding of their concerns are your major tools for the promotion of this crucial health intervention. Once you have completed this module, you will be able to answer questions and provide practical tips to caregivers on how to support their child while they are being vaccinated and help them deal with common side effects. You will also be able to provide evidence-based information to counter any misinformation that might be spreading through the caregivers network or social media. Because you have the information about the childs vaccination status, you can tailor your response and refer families to other experts and specialists where necessary. The quality of your support is vital. It may influence whether caregivers complete the vaccination schedule for their children, and the way in which they engage with health services in the future. You may never know for sure, but you may have saved a childs life, while protecting other young children who cannot be vaccinated because of counter-indications, as well as infants who have not yet received their first vaccines! MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 16 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES IIIMMUNIZATION AND VACCINE PREVENTABLE DISEASES A MAJOR PUBLIC HEALTH ACHIEVEMENT 1. Childhood Immunization In its listing of 100 objects that have shaped public health, Global Health NOW of the Johns Hopkins Bloomberg School of Public Health called immunization one of the most important public health achievements in human history.2 The development of vaccines has accelerated since the first use of a smallpox vaccine in 1798, and particularly since the middle of the 20th century. Today more than 30 infectious diseases can be prevented with vaccines (see Information Card 1 in annexes for information about common vaccine-preventable childhood diseases). Even though the worlds population has grown by almost 70 per cent, Gavi The Vaccine Alliance reports that cases of common vaccine preventable diseases have fallen by around 90 per cent (Gavi, 29.01.2019). Smallpox has been eradicated, as well as two of the three wild polio strains (WHO, 24.10.2019), and a number of countries have achieved measles-free status. Today, WHO recommends 10 vaccines during infancy and the early childhood years, plus one (for HPV) during adolescence recommendations that apply to every country (WHO, April 2019). Bacillus Calmette Guerin (BCG) (1 dose protects against tuberculosis) DTP-containing vaccine (3 doses protects against Diphtheria, Tetanus, and Pertussis Td (Tetanus and Diphtheria) booster at 9-15 yrs Hepatitis B (34 doses - protects against hepatitis type B) Hib (3 doses - prevents Haemophilus influenzae type b) Pneumococcal (3 doses - protects against pneumococcal disease) Polio (OPV and/or IPV, 34 doses - protects against poliomyelites) Rotavirus (23 doses - protects against rotavirus disease) Measles (2 doses - protects against measles) Rubella (1 dose - protects against rubella) HPV (2 doses - protects against human papilloma virus that can cause cervical and other types of cancer) (adolescent girls) Most of the countries in the ECA region use the MMR vaccine, a combined vaccine against measles, mumps and rubella. WHO recommends vaccination against mumps in high performing immunization programmes with the capacity to maintain coverage over 80% and where mumps reduction is a public health priority. Unfortunately, there has been a 30 per cent increase in cases of measles globally, and many countries in Europe and Central Asia have reported falling immunization coverage: half of the countries in the Region have DTP3 and MCV1 coverage below the 95 per cent minimum needed to ensure herd immunity. In 2019 WHO declared vaccine hesitancy as one out of 10 threats to global health. As we will discuss in more detail below, the WHO Vaccines Advisory Group has attributed this to the three Cs: Complacency, in-Convenience, and lack of Confidence, which contribute to vaccine hesitancy among parents and caregivers. Health workers, especially home visitors who work closely with their communities, have a critical role to play, as their advice is trusted by parents and can influence decisions around vaccination. To fulfil this role, however, home visitors need clear, factual information on vaccines, as well as communication tools to tackle the global threat to health posed by vaccine hesitancy (WHO, 2019). 2 Global Health NOW. One hundred objects that shaped public health. Retrieved from https://www.globalhealthnow.org/object/vaccines https://www.globalhealthnow.org/object/vaccines 17 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 17 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 2. How Vaccines WorkAs a home visitor, you often have very little time to cover a large range of relevant topics with the families you visit. That is why you need to be able to explain, in concise and understandable terms, how vaccines work and why it is important to vaccinate all children. To be efficient, apply the Elevator speech approach (Karam et al., 2019a, b) to make your most important points in the time that it would take for a ride in an elevator. It is important to tailor your messages to each family, taking into account their existing level of knowledge, as well as their concerns and attitudes around vaccination. Visuals can often be very powerful, helping you to make a point quickly and convincingly. Reflection and discussion There are many reasons why children are not vaccinated or vaccinated incompletely, but the following four steps can help you prepare short, clear responses to families that have concerns. First write down some of the questions and concerns you and your colleagues have heard from the caregivers you visit. Then choose several questions related to how vaccines work and develop brief elevator speeches with your colleagues or on your own. For your responses, use simple language, avoid jargon and technical terms; use analogies or simple examples and comparisons. Then try out your elevator speeches on others (family, caregivers, etc.) Finally, compare your responses to those provided by experts from WHO and the European Centre for Disease Prevention and Control (ECDC) and modify your elevator speeches as needed. Here are your practice questions: the kind of questions you may well be asked by the families you visit. Look through them and prepare some answers. When you have finished, compare your answers to the information provided in Box 1 below: How do vaccines work? Why it is better to be vaccinated than to acquire natural immunity (have the child fight the disease on his/her own)? Are the vaccines, especially multiple doses, too strong for a small fragile baby to handle? Can vaccines cause the infection they are supposed to prevent? What happens when a child has been sick with a vaccine-preventable disease? Doesnt this make them more resistant and stronger in fighting new diseases? I have heard that vaccinating my child also protects other children. What is community/ herd immunity and why is it important? UNICEF/Krepkih Andrey MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 18 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES How do vaccines work? Vaccines contain either a much-weakened form of the virus or bacterium that causes a disease, or a small part of it. When the body detects the contents of the vaccine, its immune system will produce the antibodies required to fight off infection and eliminate the disease-causing virus or bacterium. When a person later comes into contact with the virus or bacterium, the immune system will recognize it and protect the person by producing the right antibodies before any disease can be caused. (ECDC, Questions and answers about childhood vaccinations) Why it is better to be vaccinated than to acquire natural immunity (have the child fight the disease on his/her own)? Infants and young children are vaccinated in controlled settings (doctors offices or clinics), and parents are informed about possible side effects, how to manage these, and when to seek additional advice. With vaccines, the immune system is stimulated to develop protection without infection, hence it is more effective (WHO, 2017). The only way a child can acquire natural immunity is to become sick with the disease itself. Even when the impact on the child is mild, it may mean additional caregiving and expenses for some families. But the disease could also result in complications, long-term illness, disability and even death, and many other children may become exposed in the process. For measles, the Center for Disease Control and Prevention (CDC) has reported complications with 30 per cent of measles cases, most commonly diarrhoea, ear infections and pneumonia. For every 1,000 cases of measles, one child may also be affected by encephalitis and two may die. Whats more, the measles infection can destroy much of the wider immunity a child has built up, increasing their risk of contracting other diseases. Are the vaccines, especially multiple doses, too strong for a small fragile baby to handle? Newborns commonly manage many challenges to their immune systems at the same time. The mothers womb is free from bacteria and viruses, so newborns immediately face a host of different challenges to their immune systems. From the moment of birth, thousands of different bacteria start to live on the surface of the intestines. By quickly making immune responses to these bacteria, babies keep them from invading the bloodstream and causing serious diseases. In fact, babies are capable of responding to millions of different viruses and bacteria because they have billions of immunological cells circulating in their bodies. Therefore, vaccines given in the first two years of life are a drop in the ocean of what an infants immune system successfully encounters and manages every day. (ECDC. Questions and answers about childhood vaccinations) Can vaccines cause the infection they are supposed to prevent? Inactivated vaccines do not have live germs and cannot cause infections. Live vaccines have weakened germs that are unable to cause disease in healthy people. Rarely a mild form of infection may occur. (WHO, 2017) What happens when a child has been sick with a vaccine-preventable disease? Doesnt this make them more resistant and stronger in fighting new diseases? The defences of children who have survived a vaccine preventable-disease are not necessarily stronger. On the contrary, the disease tends to make the child weaker and more vulnerable. Recent research on measles has shown that having suffered and survived this deadly disease may make it harder for a child to fight other infections for years to come. It has been known for some time that children who had measles were 2-3 times more likely to die from pneumonia, diarrhoea or other conditions in subsequent years. Now, we have learned that the measles virus infects and destroys memory B-cells. These are the cells where the immune system stores information about past Box 1. How vaccines work https://www.cdc.gov/vaccines/pubs/pinkbook/meas.html https://www.ecdc.europa.eu/en/immunisation-vaccines/childhood-vaccination/faq?pdf=yes&preview=yes 19 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 19 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES infections that can help it in fighting new infections. In addition, the measles virus also reduces the ability of the immune system to respond to new and dangerous pathogens. It now seems possible that there could be actually five times more indirect deaths from immune amnesia (caused by the measles virus) than the initial infection caused. (Gallagher, 2019) I have heard that vaccinating my child also protects other children. What is community/herd immunity and why is it important? Vaccination protects you and your family, and it also helps protect others. It contributes to community immunity. This is achieved when enough people in a population are immune to an infectious disease (through vaccination and/or prior illness) so that it is unlikely to spread from person to person. Even those who cannot be vaccinated because they are too young, are allergic to vaccine components, or vaccination is contraindicated for them, are offered some protection because the disease cannot spread in the community and infect them. This is also known as herd or community immunity. When more than 95% of population is (blue dots) in a community they can protect those who are not yet vaccinated (yellow dots) from those who are infectious (red dots) When groups of unvaccinated people build up and are in close proximity, community immunity doesnt work and the disease spreads. For additional brief answers to common questions and concerns (developed by WHO and ECDC communication experts), check Information Card 2 Frequently Asked Questions (FAQs) about Childhood Vaccinations (in annexes), which also includes links to additional information. However, keep in mind that you will have to tailor your answers to the needs of individual families, their attitudes towards vaccination, and level of knowledge, so just learning some standardized answers by heart is not enough. 20 MODULE 22 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 20 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES 3. The Benefits of Vaccination to the Individual Child and Society NOPOVERTY AFFORDABLE ANDCLEAN ENERGY CLIMATEACTION LIFE BELOWWATER LIFE ON LAND PARTNERSHIPSFOR THE GOALS DECENT WORK ANDECONOMIC GROWTH SUSTAINABLE CITIESAND COMMUNITIES ZEROHUNGER EDUCATIONQUALITY EQUALITYGENDER AND SANITATIONCLEAN WATER PEACE, JUSTICEAnd STRONG INSTITUTIONS RESPONSIBLECONSUMPTIONAND PRODUCTION GOOD HEALTHAND WELL-BEING INDUSTRY, INNOVATIONAND INFRASTRUCTURE REDUCED INEQUALITIES GLO BA L S TRA TEGY FOR WOME NS, CHILDRENS AND ADO LESCEN TS HEA LTH SU RVIV E TH RIV E TRANSFORM Figure 3. Sustainable Development Goals (SDGs) Reflection and discussion Immunization for vaccine-preventable diseases provides one of the strongest financial returns of any public health intervention, but its benefits go far beyond the health sector alone. Take a look at Figure 3, which sets out all of the Sustainable Development Goals. Can you list ways in which the benefits of immunization can be felt across all of these goals? To help you, the potential links between immunization and the SDGs are set out in Table 1: perhaps you can think of others! When you see how vaccination supports the achievement of the SDGs, you can feel confident and proud in promoting such a cost-effective and safe service to your community and to the families you serve. Immunizing children is one of public healths best buys. Vaccines are relatively easy to deliver and, in most cases, provide lifelong protection. They boost development both through direct medical savings and indirect economic benefits such as cognitive development, educational attainment, labour productivity, income, savings and investment (Gavi The Vaccine Alliance, 2019) https://www.gavi.org/vaccineswork/value-vaccination https://www.gavi.org/vaccineswork/value-vaccination 21 MODULE 21 PROTECTING YOUNG CHILDREN FROM VACCINE-PREVENTABLE DISEASES Sustainable Development Goal Vaccination programmes 1. No povertyPrevent expensive illnesses and associated health-care costs, reducing the number of people forced into poverty. 2. Zero hungerProtect childrens nutritional status, because illness impairs absorption of essential nutrients. Malnourished children are also at a higher risk of death from vaccine-preventable diseases. 3. Good health and wellbeing Reduce mortality and morbidity and provide the platform for the delivery of other health services. 4. Quality educationVaccinated children have better nutrition and health status, and have, therefore, better chances to learn and achieve. 5. Gender equalityGlobally, this is a gender-equal intervention, with similar rates of vaccination for girls and boys 6. Clean water and sanitation (WASH) Prevent diarrhoeal diseases, alongside WASH programming. 8. Decent work and economic growth Contribute to the growth of healthy children who attain education and become a productive workforce. Caregivers are more likely to be able to work when children are not affected by vaccine-preventable diseases. 10. Reduce inequalityProtect all communities and children, including the most marginalized, those living in rural areas and in conflict zones, which can be further devastated by epidemics of infectious disease. 11. Healthy citiesProtect children from increased risk of exposure to vaccine-preventable diseases in cities where infections are more able to spread quickly. 16. Peace, justice and strong institution Contribute to equity and strong health services. Table 1. Vaccination and the achievement of the Sustainable Development Goals (SDGs) Source: Gavi, 2019 UNICEF/ Krepkih Andrey 4. Vaccine Safety and Side Effects Before you respond to concerns about the safety of vaccines in general
Report
01 Апрель 2013
Tracking anti-vaccination sentiment in Eastern European social media networks
https://www.unicef.org/eca/reports/tracking-anti-vaccination-sentiment-eastern-european-social-media-networks
Page 1 Page 2 A lie can travel halfway around the world while the truth is putting on its shoes. Mark Twains quote is more relevant than ever in times of online communication, where information or misinformation, bundled in bits and bytes, streams around the earth within seconds. SUMMARY DISCLAIMERUNICEF working papers aim to facilitate greater exchange of knowledge and stimulate analytical discussion on an issue. This text has not been edited to official publications standards. Extracts from this paper may be freely reproduced with due acknowledgement. For the purposes of this research, no personal data has been extracted and stored for data collection and analysis. This UNICEF working paper aims to track and analyse online anti-vaccination sentiment in social media networks by examining conversations across social media in English, Russian, Romanian and Polish. The findings support the assumption that parents actively use social networks and blogs to inform their decisions on vaccinating their children. The paper proposes a research model that detects and clusters commonly-used keywords and intensity of user interaction. The end goal is the development of targeted and efficient engagement strategies for health and communication experts in the field as well as for partner organisations. Page 3 CONTENT1. Rationale 2. Introduction 2.1 Social Media: the conversation shift 2.2 Social Media: Fertile ground for anti- vaccination sentiment 2.3 Social Media Monitoring 2.4 Influencers 3. Research Objectives 4. Methodology 4.1 Descriptive and Explorative Research Design 4.2 Data Collection 4.3 Limitations 4.4 Ethical Considerations 5. Empirical Findings 5.1 Networks: Volume and Engagement 5.2 Common Arguments 5.2.1 Religious and Ethical Beliefs 5.2.2 Side Effects 5.2.3 Development Disabilities 5.2.4 Chemicals, Toxins and Unnecessary 5.2.5 Conspiracy Theory, Western Plot and Conflict of Interest 5.3 Influencers 6. Discussion and Recommendations 6.1 Discussion 6.2 Recommendation Acknowledgements Literature Appendix 4 555 78 9 1111121313 1414191920212222 23 252527 313134 Page 4 Over the past few years, the region of Central and Eastern Europe and the Commonwealth of Independent States has been troubled by the rise of a strong anti-vaccine sentiment, particularly via the internet. Wide ranging in origin, motive, source, and specific objectives, this online sentiment has succeeded in influencing the vaccination decisions of young parents, in many instances negatively. A number of factors are at play in this online anti-vaccine sentiment. First, vaccination coverage in this region is generally high. As a result, vaccine-preventable childhood diseases like polio and measles have been absent in most countries for the past few decades. This has led to complacency toward the diseases and has unfortunately made vaccines, rather than the diseases, the focus of debate and discussion. Meanwhile, poorly-managed immunization campaigns in some countries have caused widespread mistrust of vaccines and government vaccination programs. Most countries have run sluggish, high-handed public communication campaigns while avoiding transparent dialogue with the public on possible side effects, coincidental adverse events and other safety issues. Moreover, when new vaccines have been introduced, they have often just exacerbated the publics existing doubts, hesitations or outright resistance. Into this mix, rapid penetration of the internet in the region has provided a powerful, pervasive platform for anti-vaccine messages to be disseminated. Rooted in scientific and pseudo-scientific online sources of information, messages are often manipulated and misinterpreted, undermining the confidence of parents and causing them to question the need for, and efficiency of, vaccines. The result is hesitation towards vaccination, which in large numbers poses a serious threat to the health and rights of children.This paper aims to examine this rapidly growing phenomenon and its global lessons. Depending on the nature of the problem, special strategies need to be developed to tactically address and counter, diffuse or mitigate its impact on ordinary parents. The prevailing approach of most governments in largely ignoring these forces is unlikely to address this growing phenomenon. Governments, international agencies and other partners - in particular the medical community - need to combine forces to identify the source and arguments of these online influences, map the extent to which they control negative decisions, develop more effective communication strategies and ultimately reverse this counterproductive trend. RATIONALE Page 5 The first part of this paper describes how anti-vaccination groups communicate and how social networks connect concerned parents in new ways. The second part emphasizes the role of social media monitoring in strategic communication, based on understanding audience needs. 2.1 Social media: The conversation shifts The rise of social networks has changed both the way we communicate and the way we consume information. Even within the relatively recent internet era, a major evolution has occurred: In the initial phase known as Web 1.0, users by-and-large consumed online information passively. Now, in the age of social media and Web 2.0, the internet is increasingly used for participation, interaction, conversation and community building1. At the same time, conversations or social interactions that used to occur in community centres, streets, markets and households have partly shifted to social media2. Parents, for instance, suddenly have an array of collaborative social media tools with which to create, edit, upload and share opinions with their friends, peers and the wider community. These conversations are recorded, archived and publicly available. 2.2 Social media: Fertile ground for anti-vaccination sentiment In todays information age, anyone with access to the internet can publish their thoughts and opinions. On health matters in particular, the public increasingly searches online for information to support or counter specialised, expert knowledge in medicine3. Due to the open nature of user participation, health messages, concerns and misinformation can spread across the globe in a rapid, efficient manner4. In this way, social media may influence vaccination decisions by delivering both scientific and pseudo-scientific information that alters the perceived personal risk of both vaccine-preventable diseases and vaccination side effects. INTRODUCTION 1 Constantinides et al, 2007 2 Phillips et al, 2009; Brown, 2009 3 Kata, 2012 4 Betsch et al, 2012 Page 6 In addition to this accelerated flow of information (whether accurate or not), social media messages tend to resonate particularly well among users who read or post personal stories that contain high emotional appeal. This holds true for anti-vaccination messages too. In other words, both logistically and qualitatively, social media is intensifying the reach and power of anti-vaccination messages. Negative reactions to vaccines are increasingly being shared across online platforms. All of this leads to a frustrating predicament and critical challenge: Immunizations protect people from deadly, contagious diseases such as measles, whooping cough and polio. But parents influenced by anti-vaccination sentiment often believe vaccines cause autism, brain damage, HIV and other conditions, and have begun refusing them for their children. As a consequence, health workers face misinformed, angry parents, and countries face outbreaks of out-dated diseases and preventable childhood deaths5. Why do anti-vaccination messages resonate with so many parents in the first place? Parental hesitation regarding vaccinations is thought to stem from two key emotions: fear and distrust: Vaccination is a scary act for many children and parents. A biological agent is injected into the child. The way the biological agent works in the childs body is for most people unclear, which appeals to parents fears. The high level of distrust stems from the intersection of government, medicine and pharmaceutical industry. The nature of its act and the fact that vaccinations are mostly compulsory leads to worries among citizens. (Seth Mnookin, 2011) This distrust, along with the interactive nature of social media, suggests an urgent need for health workers to become attuned to arguments and concerns of parents in different locations and of various cultural backgrounds. To achieve more synergistic relationships with an audience, organisations need to shift their communications strategy from getting attention to giving attention6. Compounding this challenge is the fact that some anti-vaccination groups are not merely sceptics or devils advocates, but operate in an organized, deliberate and even ideological manner. These anti-vaccination groups often employ heavy-handed 5 Melnick, 20116 Chaffrey et al, 2008 Page 7 communication tactics when dealing with opponents: they delete critical comments on controlled media channels, such as blogs7 ; they mobilize to complain about scientists and writers critical of their cause; sometimes they go going as far as to take legal action to prohibit the publishing of pro-vaccine material. Governments and organisations aim to keep parents accurately informed about vaccinating their children. As more of the public conversation indeed battle takes place across social media, there is an urgent need to understand this online landscape. This, in turn, requires the use of effective monitoring tools. 2.3 Social media monitoring Social media analysis plays an important strategic role in understanding new forms of user-generated content8 . Indeed, this type of monitoring has become a leading trend in Marketing, PR, political campaigns, financial markets and other sectors. As demand for this kind of data increases, more monitoring tools are becoming available. These tools search social networks for relevant content, and archive the publicly available conversation in a database. Researchers conduct their internet analysis primarily by formulating combinations of keywords that can be placed in relation and weighted for importance. There are four different types of social media monitoring: Monitoring by volume looks at the amount of mentions, views and posts a topic, organization or user receives. Monitoring by channels maps and examines the various networks that users use to exchange content. Monitoring by engagement seeks deeper insight into how many users actually respond, like, share and participate with the content. Monitoring by sentiment analysis is a qualitative approach that uses word libraries to detect positive or negative attitudes by users towards an issue9. The first phase in social media monitoring is listening to what users say, because in order, for instance, to engage effectively with parents on social networks, it is important to know what they are talking about10. 7 Kata, 2012 8 Cooke et al, 2008 9 The approach must employ qualitative analysis as machines are not able to track sarcasm or slang. 10 Kotler et al, 2007 Page 8 Social media monitoring is a young discipline that began just a few years ago, and in its initial phase the practice faced a number of challenges. Data was very complex, so first generation monitoring tools produced results that were unstructured and generally overwhelming11. Even when that data was sorted and structured, organizations struggled to generate actionable management recommendations from it12. Since that time, however, social media professionals and research communities have made steady progress in overcoming the early challenges. 2.4 Influencers Recent studies on social media networks emphasize the central role played by influential individuals in shaping attitudes and disseminating information13. Indeed, it is argued that a group of such influencers is responsible for driving trends, influencing public opinion and recommending products14. One study found that 78% of consumers trusted social peer recommendations, while just 14% trusted advertisements15. Intensive interaction and content sharing through social media means that an audience instinctively determines its own opinion leaders. What makes opinion leaders particularly interesting and important from our perspective is that they add their personal interpretation to the media content and pass it on to their audience. Depending on whether these influencers speak responsibly or not, this can have positive or negative impact on the goal of disseminating accurate information. In his book The Panic Virus, journalist Seth Mnookin offers some examples of controversial influencers: A British gastroenterologist, Andrew Wakefield, entered into the vaccine discourse and alleged that the measles-mumps-rubella vaccine might cause autism. The medical community eventually dispelled his arguments and he lost his medical license. For a decade Wakefield - though not a public health specialist - very successfully disseminated misleading information and garnered a significant social media following. Meanwhile, actress and model Jenny McCarthy has become another self-proclaimed expert on vaccine safety. Through frequent public appearances she has positioned herself as an 11 Wiesenfeld et al, 201012 Owyang et al, 201013 Tsang et al, 2005; Kiss et al, 2008; Bodendorf et al, 201014 Keller and Berry, 200315 Qualman, 2010 Page 9 educated, internet-savvy mother set on challenging the medical establishments information about vaccinations. This, too, has helped fuel the recent growth in anti-vaccination sentiments. The public following and authority gained by Wakefield and McCarthy demonstrate how with the proliferation of online channels and the user as the centre of attention, it becomes difficult for information seekers to differentiate between professional and amateur content16. By the time the record is set straight, trust in immunization is been partly destroyed. Fostering the positive opinion of influencers in communities can have a disproportionately large impact in terms of online reputation17. Though they may not know each other in the real world, and despite ever-expanding advertisement platforms and sources, consumers around the world still place their greatest trust in other consumers18. Audiences listen to opinion leaders because they are known to be independent, credible and loyal to their peers19. Identifying and influencing the influencers of the social media conversation in the region should therefore be part of any effective strategy to reinforce positive messages in the vaccination debate. Though the internet is increasingly used to search for health information, a number of questions about social media and vaccination decisions are still unanswered: Which channels are used by anti-vaccination groups? What are the key arguments and conversation themes? What makes anti-vaccination messages appealing to parents? Who are the opinion leaders in online discussions? What are the best strategies to respond to anti-vaccination arguments? This paper seeks to understand the internal dynamics of anti-vaccination sentiment in social media networks in Eastern RESEARCHOBJECTIVES 16 Cooke et al, 200817 Ryan et al, 200918 Nielsen, 200919 Weiman, 1994 Page 10 Europe20. These insights are expected to help health workers, partners and national governments to develop appropriate response strategies in order to convince the public of the value, effectiveness and safety of vaccinations. The objectives of this research are: 1. To monitor social media networks, consolidate existing data and information from partners. 2. To categorize and analyse conversation themes, based on volume of discussion, influence, engagement and audience demographic as appropriate. 3. To identify influencers in the different language groups and platforms. 4. To contribute to a set of recommended strategies to address specific anti-vaccine sentiment around the various conversation themes. This content analysis is expected to help us understand the motivations and mind sets behind the sentiment, and offer clues that can inform the development of a strategy to effectively address the phenomenon. The research is also expected to help drawing comparisons between the anti-vaccination sentiment phenomenon and similar sentiments expressed against interventions in nutrition, child protection and other areas of UNICEF practice. This paper is supported by UNICEF Department of Communication in New York and UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States. The region covers 22 countries and territories: Albania, Armenia, Azer-baijan, Belarus, Bosnia & Herzegovina, Bulgaria, Croatia, Georgia, Kazakhstan, Kosovo (UN Administered region), Kyrgyzstan, TFYR Macedonia, Moldova, Montenegro, Roma-nia, The Russian Federation, Serbia, Tajikistan, Turkey, Turkmenistan, Ukraine, Uzbekistan. UNICEF does not have a country programme in the Russia Federation but is in discussions to develop a new mode of engagement. Page 11 In order to assess the dynamics of the anti-vaccination sentiments in the four languages, a systematic mapping and content analysis via social media monitoring is proposed. For the purpose of stakeholder monitoring in social media, a combination of descriptive and exploratory methods in form of quantitative and qualitative observation is proposed. According Wiesenfeld, Bush and Skidar (2010) it is reasonable to combine both methods because social media monitoring offers the richness of qualitative research, with the sample sizes of quantitative research. It may also give the opportunity to overcome problems associated with each research method in order to understand stakeholders dynamics in social media. 4.1 Descriptive and Explorative Research Design The descriptive methodology involves recording the activities of users and events in a systematic manner. Information is recorded as events occur and archived. Descriptive research in this case involves: Figure 1: Research Process for data gathering and analysis. METHODOLOGY 12 Aggregating text from public accessible social networks in in English, Russian, Polish and Romanian language. Cleaning and categorizing the data over time. The data is categorized and analysed into reoccurring conversation themes, based on volume of posts, engagement and audience demographic as appropriate. The exploratory methodology follows the descriptive research to allow for the interpretation of patterns and to provide background understanding of sentiment and attitudes of users. The results of the structured observation will be put into context by the human judgement of the researcher through the participant observation. In this research, the researcher will be a complete observer and will not interact with the users during the participant observation (Saunders et al, 2009). 4.2 Data Collection Traditional sampling techniques such as random, convenience or judgemental sampling are difficult to apply to a fluid social media environment. On top of the social media measurement process, the selected social media channels feed into the sample set. The posts are further categorized into different issue arenas that will be associated with relevant stakeholders. Figure 1 presents the data collection process for monitoring stakeholders in social media.The process contains the following six steps: 1. Channels: The first step of the data collection process involved the selection of relevant social media channels. Social media monitoring is instead generally considered to provide a complete set of all contributors, because tools like Radian6 or Sysomos are designed to capture a wide range of social media channels, such as blogs, forums, Twitter, Tumblr, Youtube and Facebook. 2. Demographics: The software gathered relevant posts that were posted in English, Russian, Polish and Romanian language3 during the period of 1 May and 30 July 2012. Posts could be submitted from all regions worldwide. 3. Context: The quality of data collection is determined by how well the collected data is gathered with regards to formulated searches. Keyword logic and search profiles were employed to filter the data. The full list of keyword combination can be found in Appendix A. 3The approach must employ qualitative analysis as machines are not able to track sarcasm or slang. Page 13 4. Data Collection: Relevant social media mentions that contained an issue-related keyword in relation to a stakeholder-related keyword was archived in the database. The list of relevant mentions was stored chronologically and assigned an ID. The full list of exported information about each mention was stored in a separate EXCEL file. 5. Data Analysis: The empirical application and content analysis of the relevant posts can be found in Chapter 6. 4.3 Limitations There are limitations in terms of reliability and validity of the recorded data. The data collection covers a three-months period. There is a need for caution when generalizing the data because events and evolution of discussions may alter the findings in other time periods. Therefore, limitations in reliability refer to reproducibility of research results. Reliability in the extent to which measures are free from error and therefore provide consistent results, such as the consistency of data availability in social media monitoring, is the second limitations. Quantitative observation has relatively high reliability because it reduces the potential for observer bias and enhances the reliability of data (Malhorta et al, 2007). However, social media monitoring might carry the risk of monitoring bias, as the relevant posts are extracted through keyword logic that is developed by the researcher. The collected data cannot be regarded as complete. For example, the share of Russian-speaking discussions seems to be fairly low compared to the amount of users accessing social media. Governmental control and censorship might also be contributing for lower volumes.The external validity, which is defined as the extent to which the research results are applicable to other research settings (Malhotra et al, 2007), is relatively low. Because of the richness of data, the sampling needs to be based on the experience of the researcher. As a disadvantage, the lack of established sampling technique in social media limits the ability to generalize the findings to other relevant issue arenas or stakeholders in the population. However, the ability to generalize the results was enhanced by careful use of the theoretical terms and relationships in the stakeholder literature (especially Freeman, 1984; Mitchell et al, 1997; Luoma-aho et al, 2010; Owyang et al, 2010). 4.4 Ethical Considerations Monitoring social media conversations raises two important questions about a) the protection of privacy, and b) ethical concerns. The growth of interest in social media monitoring has Page 14 triggered a new debate about ethics, which centers on what is in the public domain and what is not (Poynter, 2010). Privacy is a big issue, and social networking sites are under public criticism for lax attitudes regarding the security and respect of users privacy (Wakefield, 2011). It is the responsibility of the market researcher to protect a respondents identity and not disclose it to external audiences (Malhotra et al, 2007). Social media monitoring offers a rich volume of data, however the Internet is largely unregulated. The data of users around the world is stored on servers in the US and completely available to the US authorities. What might seem legal to the researcher may not necessarily be deemed morally right by society. Public interactions in social media are available for anyone and can be assigned to a personal IP address, geographic location, language, date and even specific computer. For the purposes of this research, no personal data has been extracted. The IP addresses and geographic locations have not been stored in the excel exports as it is not necessary for the purpose of the research. A unique post ID identifies each post. The following findings start with an overview of the networks used by the anti-vaccination community. Trends in volume and engagement are outlined in 5.1. In 5.2, clusters of common belief of the anti-vaccination sentiment are categorized and explained. The importance of influence in the anti-vaccination discussion is illustrated 5.3 because it is critical to understand that communication needs require adjustment to each country or region, which itself can present a challenge. 5.1 Networks: Volume and Engagement During May to July 2012, the researchers recorded messages with anti-vaccination sentiment from 22,349 participants. The majority of participants spoke English, followed by Polish, Russian and Romanian. EMPIRICALFINDINGS Page 15 Figure 2: Participants of anti-vaccination discussions per language. Across all four researched languages, blogs are the most frequently used channel for posting anti-vaccination content in social media. Blog is short for weblog, which is a website normally maintained by an individual (or group of individuals) and updated with regular entries. Entries are typically displayed in chronological order and tagged with relevant keywords and phrases. Blog visitors usually have the opportunity comment and share the content on blogs. Blogs are by far the most important channel in terms of volume of posts in Romanian (86% of all posts) and Polish (85% of all posts). In Russian discussions, 65% of all posts are submitted on blogs and in English nearly half of the anti-vaccination content (47%) is posted on blogs. Facebook is the second largest channel in terms of volume of posts. The social network has a share of 25% in English speaking networks, 13% in Polish, 8% in Romanian, and 5% in Russian channels. Facebook allows users to build personal profiles accessible to other users for exchange of personal content and communication via the Facebook. Twitter, which allows users to send brief (<140 character-long) updates, is the second largest channel in Russian-speaking (24% of the total volume) and fourth with 5% in English-speaking anti-vaccination communities. Other channels to consider are News websites and Forums in which users post comments to engage in discussions about specific topics. Since 68% of all participants in the anti-vaccination discussions during the observed time-period speak English, the dataset is able to reveal more accurate insights into demographics compared to the other languages. Insights in all languages can be found in Appendix 4, while the following analysis focuses on the English Page 16 data set. The English dataset also reveals that blogs have generally the highest rates of mentions (61%), conversations (67%), posts (67%) and interactions (43%). Based on the volume of posts, it is a logical consequence that most engagement takes place on blogs. Engagement is defined as followed: Post: An initial message submitted to a social networking site, i.e. a blog post, Facebook status, tweet, video, etc. Interaction: Any activity created as a direct response to an initial post, i.e. comments, likes, retweets, @replies, etc. Conversation: The sum of a post and all its related interactions. Note: a post with at least one interaction is considered as conversation. Mention: An appearance of search terms in a public social media space. Figure 3: Distribution by channel for Romanian, Russian, English and Polish networks Page 17 Blogs, forums, and Facebook are the leading networks for anti-vaccination discussions in English during the observed time-period. In other words, the anti-vaccination sentiments are expressed on those platforms through posting user-generated content. However, while conversations on forums only makeup 2% of total conversations, they account for 25% of all interactions among users. This indicates a heavily engaged audience. It can Figure 4: Mentions, Conversations, Posts and Interactions per channel. Page 18 be argued that opinions are formed during interactions among users and therefore, it is vital to add pro-vaccination content to the discussions on forums. Similarly, Facebook only contains 9% of conversations, but 21% of interactions. Both channels are important to consider for interactions with the anti-vaccination sentiment even if more posts occur on blogs. Similar findings occur in Forums. Forums are designed to be interactive conversation, where topics are discussed in greater depth. The English dataset is a reflection of this distinguish feature 16% of all posts and 25% of all interaction occur on Forums. The figures show that while the volume of content on Forums is relatively low, the engagement is an important strength that shaped the opinion in the anti-vaccination community. Figure 5 indicates that the data skews towards female audiences when issues such as developmental disabilities (59%), chemicals and toxins (56%) and side effects (54%) are discussed within the anti-vaccination sentiment, whereas men focus on arguments around conspiracy theory (63%) and religious/ethical beliefs (58%). Anti-vaccination social media participants are approximately 56% female and 44% male. Figure 5: Gender comparison in English per argument. Page 19 5.2 Common Arguments The amount of argument-mentions in anti-vaccination sentiment changes significantly by language during the observed time-period. Figure 6 illustrates that conspiracy theory and religious/ethical beliefs are the main topic trends in English, while religious/ethical beliefs drive the majority of discussions in Russian speaking anti-vaccination discussions. Polish anti-vaccination discussions are driven by arguments about side effects and chemicals and toxins in vaccines. The issue of chemicals and toxins is the major driver in Romanian discussions during the observed time-period. The arguments are described in detail in the following sections. The categories are based on keyword strings that were narrowed down over time. Issues should not be regarded in a static way, they might overlap and are interconnected. 5.2.1 Religious and Ethical Beliefs Religious and ethical discussions are especially active in discussion in Russian, with 96% of all anti-vaccination discussions focused on that issue. In English discussions, 32% of all anti-vaccination discussion use religious and ethical arguments. The arguments are less relevant in Polish (5%) and Romanian (0%) speaking anti-vaccination discussions. The main train of thought derives from Figure 6: Allocation of arguments by language for the anti-vaccination sentiment. Page 20 the belief that humans are created just as they should be and external interference is not required. My body was designed by God to be self healing and self regulating and no man will be able to do better than God is a quote by a female blog commentator from the US. Another user states, anything that involves substances that should never belong in a humans body, should not be injected or consumed without that individuals consent. Anti-vaccination advocates believe in homeopathy and alternative medicine. My BodyMy Decision writes a community member from Australia. A broad sentiment that mandatory vaccination is a violation of human rights can also be detected. From an ethical standpoint, the anti-vaccination community claims that it is a basic human right to be free from unwanted medical interventions, like vaccine injections. The same kind of argumentation can be recorded in all four languages. On June 15th 2012, the Polish Parliament voted to change the existing laws on vaccinations. The Act on Preventing and Fighting Infections and Infectious Diseases in Humans and in The Act on National Sanitary Inspection has created controversy among social media users because of it makes vaccination mandatory. The anti-vaccination advocates were sending petitions to the Polish President demanding him to stop the act. The petition received support from some representatives of the Catholic Church, but not an official support from the church as whole. Radio Maryja, the most powerful independent catholic media in the country, also critiqued the act based upon: The argument that vaccines are made based on cell lines derived from the bodies of babies killed by abortion. The notion of unethical activities by campaigning teenagers and women to be vaccinated against HPV infection and it is promoting immoral, and disorderly behaviour in the area of sexuality. 5.2.2 Safety and efficacy Side effects are the most common anti-vaccination theme in Polish networks (28%), but they also play a role in English networks (9%) and Romanian (5%). The argument is mentioned in less than 1% of all anti-vaccination discussions in Russian language. Typically, parents who reach out to online communities because they are unsure about vaccines trigger the discussions about side effects. Individual stories from parents are powerful because they humanize the discussion. One user writes, My baby is 5 months old, not vaccinated and he is going through pertussis right now! Its very scary! I HATE it! I have 3 children, the other 2 were vaccinated but Im scared to vaccinate my baby! Any other mommys new at Page 21 this? This quote reflects a level of fear and uncertainty about the right thing to do, even though the mother has experienced both the effect of vaccines and vaccine-preventable diseases. Another parent writes: My brother, sister in law, and all three kids under the age 5 were vaccinated for whooping cough and they all got it! An argument in a Russian network claims that live vaccines can mutate in the organism and create deadly strains. The fear of side effects leads to discussion about vaccines causing diseases and death. A user from the UK argues, The only way you can get this virus is if it is injected into you. Besides individual stories, argumentation backed by figures without context or sources are equally powerful in fostering fear of vaccines. For example, a member in one English network posts: Vaccinated children have up to 500% more diseases than unvaccinated children. Community members in Russia postulate that vaccinated children get sick 2-5 times more often than non-vaccinated children. For example in Romania, school nurses perform the mandatory vaccination during class, which is seen as a human rights violation and a safety issue. Parents are sceptical about the skills of the school nurses and feel surpassed by authorities in its decision to have children vaccinated. A user in a Polish anti-vaccination community states: I am a mother of two disabled children. When my daughter was five months old, she had a negative reaction to the vaccine, now she has been diagnosed with autism and mental retardation. For 10 years, I did not vaccinate my children and I would not want the right to decide on this matter taken away from me. I am an educated person, and have researched the subject and do not believe in the efficacy or safety of vaccinations. 5.2.3 Developmental Disabilities Another reoccurring argument in the anti-vaccination sentiment claims that vaccines contain toxins and harmful ingredients. Injecting vaccines into the body of a child leads to brain injury and developmental disabilities. This theme is discussed in 15% of all English and Polish speaking anti-vaccination discussions. Development Disabilities was in less than 1% of anti-vaccination discussions mentioned in Russian or Romanian networks. The arguments evolve from sentiment surrounding vaccines posing challenges to the immune system and producing antibodies that may cause autoimmune diseases. Another notable argument is that vaccines are not able to fight off the mutant viruses that develop over time. Across communities, anti-vaccination advocates link vaccines to Page 22 epilepsy, autism and neurodegenerative diseases (Parkinson and Alzheimer). A member of the Polish community writes: Mercury causes developmental disorders in children (including epilepsy and autism), in adults, neurodegenerative diseases (Parkinsons and Alzheimers), and degenerative changes in the reproductive systems of men and women, impairing their ability to reproduce offspring. It is notable that figures are used based on estimates by the author without links to sources. A Russian speaking user notes that vaccinations against pandemic influenza H1N1, also known as swine, can lead to the development of Guillain-Barr syndrome, acute poliradikulita in adults, according to Canadian researchers, published in the journal JAMA. 5.2.4 Chemicals, Toxins and Unnecessary(administration of vaccines) Our doctor has advised us to avoid vaccines in absence of a direct disease risk, since the long-term side effects have not been studied writes a member of an English-speaking community. One common argument recorded in the anti-vaccination sentiment is that studies about risks and impact of vaccinations are insufficient. Vaccines have not been tested enough and have concerns regarding the lack of long-term side effects studies. Another user states that I would really want to know whether and how well vaccine manufacturers test their final vaccine products () and how much contamination they discover. A common belief is that children having a vaccine-preventable illness just need food, water, and sanitation. In Polish communities, members use the example of Scandinavian countries lobbying for a ban of questionable and potentially harmful ingredients in vaccines. The notion that Scandinavian countries banned Thimerosal a long time ago and they have a much lower percentage of children with autism was classified was an important argument for users. Drawing on that example, the most common belief in Polish communities is that mercury may cause autism. A Russian-speaking user concludes, a recent large study confirms the results of other independent observations, which compared vaccinated and unvaccinated children. They all show that vaccinated children suffer 2 to 5 times more often than non-vaccinated children. Sources or links to the recited studies are not provided. 5.2.5 Conspiracy Theory, Western Plot and Conflict of Interest In English-speaking anti-vaccination communities (24%), a strong distrust against governments and pharmaceutical industry is Page 23 recorded. The same applies for Polish (5%), Russian (1%) and Romanian (3%) at a smaller scale. However, the U.S. and western governments are viewed critically when discussing about governments and conflict of interest. In Polish networks excessive vaccinations are seen as promoted by pharmaceutical companies in order to gain profits. The role of the pharmaceutical industry is discussed mostly negatively. The sector is regarded as corrupt marketing machine. An English-speaking user states that: In the vaccine industry, scientific fraud and conflicts of interests are causing a similar cycle of deaths and injuries that is being concealed and denied by regulators and vaccine manufacturers. The industry is viewed as profit-driven and has moved from its original purpose to save lives and protect humans. Romanian discussions directly blame the U.S. for purposefully infecting people with HIV using polio vaccines. Users create a direct link between vaccines and widespread HIV in Romanian orphanages. In the same sense, users claim that vaccines are being used against the Romanian populations. According to members of the anti-vaccination sentiment, vaccines against polio and chickenpox are used in Romania, which are not used in the U.S. anymore. Polish anti-vaccination communities state the examples of swine flu and bird flu two years ago. According to the users, both cases are plots by giant pharmaceutical companies. Some countries desperately bought a huge quantity of vaccines, while Poland acted rationally and did not buy the vaccines, which saved the state budget a couple of billion. The activists are suspicious because the epidemic ended after the new vaccines were purchased by several governments. The distrust against governments is also reflected in conspiracy theories. Patterns in English-speaking communities suggest that immunization is used to control and reduce the world population. One strain of argumentation is that vaccines that are not allowed in developed countries are imported to developing countries in order to reduce population growth. 5.3 Influencers Opinion leaders in anti-vaccination sentiment show varying characteristics across countries. However, they often appear to be well educated in alternative medicine. Some have no college education; others are in the medical field (such as nurses). A high level of volume and interaction can be recorded for influencers. They often subscribe to social channels of homeopaths and Page 24 alternative medicine advocates but they can be found across platforms. The following section lists a range of influencers that are active in different channels or languages: Name Position Facebook Fans Twitter Followers Blog Language Dr. Tennpen-ny The Voice of Reason about Vaccines 36,282 1,475 Yes English The Truth About Vac-cines Answering questions from concerned parents 21,246 N/A Yes English International Medical Council on Vaccination Purpose is to counter the messages asserted by pharmaceutical com-panies, the government and medical agencies that vaccines are safe, effective and harmless 7,983 N/A Yes English The Refusers "Vaccination choice is a fundamental human right." 9,069 12,457 Yes English Mothering Magazine Mothering is the pre-mier community for naturally minded par-ents. 66,504 102,173 Yes English Oglnopo-lskie Sto-warzyszenie Wiedzy o Szczepieniach STOP NOP Protest against new laws for mandatory vaccinations in Poland and against disinforma-tion campaigns about the effectiveness and safety of vaccines. 3,203 N/A Yes Polish STOP Pr-zymusowi Szczepie Petition campaign against new new laws for mandatory vaccina-tions in Poland. 2,866 58 Yes Polish Table 1: Examples of influencers in the anti-vaccination sentiment in social media. Page 25 With respect to the above-mentioned arguments, opinion leaders in the anti-vaccination movement put an emphasis on highlighting negative stories that focus on individual cases. In some cases, they blame outbreaks on shedding vaccinated children who get unvaccinated children sick. The argumentation is based on the conviction that vaccines are unsafe and dont work. A list of common arguments by arguments by influencers per language can be obtained in Appendix B. In this section the research question will be discussed in light of the theoretical and empirical findings. It needs to be noted that the discussion only focuses on engagement with anti-vaccination advocates in the four researched languages. This does not include pro-vaccination movements, medical professionals, partners or others. The discussion will propose a model that illustrates the different drivers of anti-vaccination sentiment based on three elements. The recommendations section builds on the three elements of the model and provides practical advice for communication strategies. 6.1 Discussion In order to develop engagement and messaging strategies for anti-vaccination sentiment, it is vital to have an abstract understanding of what drives users to become suspicious about vaccinations. Based on the findings, the paper proposes a model of anti-vaccination sentiment identification and salience. We classify three main spheres that attribute to a negative sentiment towards vaccine, which help us in the identification of trends within the anti-vaccination sentiment. The classification is illustrated in the following figure: DISCUSSION &RECOMMENDATIONS Page 26 The first attribute is the individual sphere. The main motivations for users to get involved are highly personal matters driven by concern and fear. When it comes to vaccinations, some parents are not sure what the right decision is. Am I a good mother if I do not get my child vaccinated or is it my responsibility as a caring parent to ensure the best protection for my child? Personal testimonies of other parents, especially negative stories, have a huge impact on the parent and fuel the concern. The second element that characterizes the anti-vaccination sentiment is the contextual sphere. The main driver behind the contextual sphere is a distrust of governments, pharmaceutical industry, scientific bodies and international organizations. It seems to be overwhelming for parents to understand the role of the big players. An interesting observation is that users in the contextual sphere do not seem to have a general resentment against vaccines per se but most arguments focus on lack of transparency in the decision processes as well as the potential conflict of interests trigger distrust. The third attribute is labeled as transcendental sphere. Negative attitudes towards vaccinations are derived from idealistic, religious and ethical beliefs. Arguments are rooted in strong beliefs and appear dogmatic, such as God creates us in the most ideal way or a body has its natural balance. Figure 7: Model of anti-vaccination sentiment identification and salience. Page 27 Individual, contextual and transcendental sphere are the key attributes of a member of the anti-vaccination movement. We argue that the various combinations of these attributes are indicators of the salience of members. We can identify four groups that derive from Figure 3. In order to understand salience within anti-vaccination community members, we propose the following classification Core Members are users that apply to all three spheres. They are concerned about side effects, distrust the government and live according to strong religious or ethical beliefs. Intense Members are members that apply to two of the three spheres. For example, a user might have concerns about vaccinations based on an individual sphere and also carry distrust against the pharmaceutical industry. But they are not driven by any idealistic beliefs. Alert Members are users that apply only to one of the three spheres. The doubt about vaccines derives only from one sphere and has human characteristics. They seem to be less convinced of the harm of vaccinations than the other two member groups. There is a fourth group of users, the Non-Members. They simply do not apply to any of the classification. We argue that Alert Members are easier to convince of the necessity of vaccines than Intense Members. Core Members are the hardest to convince, because the arguments against vaccines are based on various foundations. The findings also show that the intensity of argumentation, the interaction and the volume varies between the spheres. Therefore, the next section outlines practical recommendation on how to draft engagement strategies for each sphere. 6.2 Recommendations The following graphic summarizes the framework for the engagement and messaging plan that enables communication officers and health workers to react to the anti-vaccination sentiments. The framework is designed to be customizable for local realities. However, it does provide an overarching guidance for communication and campaigning initiatives. Members of the individual sphere should be approached with an emotional appeal. Users in this sphere go online and search for information in order to make an informed decision. Content that encourages parents to get their children vaccinated needs to be easy to find. Hence, search engine optimization plays an important role in the outreach strategy. Search marketing is used to gain visibility on search engines when users search for terms that relate to immunization. In order to appear on top if the search Page 28 results two general approaches should be considers: Organic search (SEO): When you immunization or vaccines into a search engine like Google or Yahoo!, vthe organic results are displayed in the main space of the results-page. For example, when parents search for information about vaccinations, pro-vaccine information should rank on top of the search engine results. By optimizing websites and posts, organizations and governments can improve the ranking for important search terms and phrases (keywords). Engaging actively in discussion and providing links to pro-vaccination content also helps to increase the visibility in the ranking. Paid search (SEM) enables to buy space in the sponsored area of a search engine. There are a variety of paid search programs, but the most common is called pay-per-click (PPC), meaning the information provider only pays for a listing when a user clicks the ad. The emphasis of the content strategy is to empower parents to ask doctors the right question in order to build confidence for the decision making process. Rather than criticising parents choices not to vaccinate, the messaging should promote an individuals ability to make the world a safer place for children. The communication strategy should also highlight the individual right and responsibility to choose to vaccinate. Through emotional Figure 8: Engagement Matrix for core spheres of the anti-vaccination movement. Page 29 messaging, hesitating parents should receive key information and explain how their choices affect their own children and the ones of others. The communities in the contextual sphere source their scepticism from general distrust against the large players involved in the vaccination industry. The engagement strategy should be based on a rational appeal that focuses on the hard facts of vaccines. It is important to avoid obvious communication tactics. Transparency about vaccines, testing, ingredients, potential side effects, funding and preventable diseases is crucial to reduce distrust. The messaging should also take into account past errors in vaccine campaigns by governments and suppliers in the regions and most importantly focus on the lessons learnt and how processes have been improving since then. Transparency can be built through a multi-channel approach that features the development of vaccines with expert testimonies. Successful cases, such as the near eradication of polio as a global effort, help to reduce distrust as well. This can be backed by official statistics on how infant mortality rates have been reduced over the past 20 years. Countries that generally have a favourable public perception, such as Scandinavian countries,
Programme
04 Октябрь 2017
Health
https://www.unicef.org/eca/health
Europe and Central Asia has surpassed global progress on child mortality, more than halving the deaths of children under five and infants since 1990. And as progress for the poorest households has accelerated, the health gap between the richest and poorest has narrowed.  However, persistent inequities reflect a continued failure to invest effectively in child-centred health systems for all. In South-East Europe, for example, child mortality among the Roma population is two to three times higher than national averages.    Problems missed at an early age can be more difficult and expensive to address later in life. Such inequities are compounded by a failure to spot problems during pregnancy and during the first 1,000 days of life, when children’s bodies and brains build the foundations for their life-long development. Problems missed at an early age can be far more difficult and expensive to address later in life.  Across the region, more than half of the children who die before their fifth birthday die in their first month of life.These deaths are often the result of conditions that are readily preventable or treatable at low cost through, for example, access to good obstetric, ante-natal and post-natal care, routine immunization and exclusive breastfeeding . The main killers of children under the age of five in the region are also preventable: pneumonia and injuries.  Emergencies have an intense impact on child health and nutrition. The impact of emergencies on children's health and nutrition can be extreme. Children on the move, such as those caught in Europe’s refugee and migrant crisis , for example, often lack adequate clothing, food, shelter or warmth. Access to health services, including immunization, has often been inadequate on their journey. The region’s existing HIV prevalence, coupled with lack of safe water and sanitation, as well as ongoing challenges related to early child development and protection all heighten the vulnerability of children during emergencies.  The region is also experiencing vaccine ‘hesitancy’ – the reluctance of some parents to immunize their children, or parental delays in immunization . This hesitancy, often fuelled by misinformation, puts children at risk of contracting, and even dying from, infectious diseases, including polio and measles.
Report
03 Апрель 2019
In Focus: Working to close nutrition gaps in the Europe and Central Asia Region
https://www.unicef.org/eca/reports/focus-working-close-nutrition-gaps-europe-and-central-asia-region
Enhancing child nutrition Working to close nutrition gaps in the Europe and Central Asia RegionAt first glance, it would seem safe to assume that children living in the Europe and Central Asia Region enjoy good levels of nutrition. Yet this is a Region characterized by nutrition gaps, with some children in some countries missing out on the proper nutrition they need to grow and thrive. It is a Region with a double burden of malnutrition undernutrition found alongside obesity. Children from marginalized communities are at particular risk of undernutrition, including the stunting that leaves them too short for their age and the micronutrient deficiencies that threaten their health and hamper their full development. Many of the problems start with the poor nutrition of women, even before they conceive, with women who are already suffering from micronutrient deficiencies more likely to have premature births. The problems continue into the earliest years of a childs life, with poor rates of exclusive breastfeeding in the Region and often inadequate feeding practices that put children at risk of either stunting or obesity. These problems are compounded by the fact that child nutrition is simply not a development priority in many parts of the Region. UNICEF works with partners across the Europe and Central U NIC EF/A RMEN IA/2 018/ OSIP OVA IN FOCUS: ENHANCING CHILD NUTRITION Toward 2030SDG 2: End hunger, achieve food security and improved nutrition and promote sustainable agriculture Avet, age 4, knows that salt matters. I always help my mom with the cooking; I add the salt, he said. My mother always tells me that we only need a little salt just one pinch. Avet is fortunate. As a result of universal salt iodization, he has effective protection against one of the worlds main causes of learning disabilities. Even mild forms of iodine deficiency a condition that can be particularly threatening during pregnancy and in early childhood leads to damage. Two decades ago, in Armenias mountainous areas, 50 per cent of all pregnant women and 40 per cent of schoolchildren had thyroid-related conditions a sign of iodine deficiency. But the country has been free of iodine deficiency since 2006, thanks to a partnership between the Ministry of Health, UNICEF and the countrys main salt manufacturer to achieve universal salt iodization. The Iodine Global Network points to Armenias success as a model for others to follow. 1 Enhancing child nutrition 2 Fast facts Approximately 12 per cent of the children in Central Asia and the Caucasus are stunted, rising to as high as 17 per cent in some areas. Stunting has a direct impact on learning outcomes in a childs early years. It can cause severe irreversible physical and cognitive damage, which can last a lifetime and even affect the next generation. The Region is seeing the worlds biggest rise in obesity among young children. Central Asia has the second highest prevalence of over-weight children under the age of five worldwide (approximately 11 per cent). Every year, more than 4 million children in the Region do not receive exclusive breastfeeding for the first six months of their lives, even though breastfeeding will protect them against health hazards such as undernutrition, micronutrient deficiencies and obesity. The Region also has some of the lowest rates of early initiation of breastfeeding newborns who breastfeed within one hour of birth in the world. In Azerbaijan, for example, 20 per cent of newborns are breastfed during their first hour of life, falling to only 14 per cent of newborns in Montenegro. In parts of Central Asia, less than half of all children are eating the diverse diet they need for healthy development. Asia Region to make child nutrition a priority and to close the nutritional gaps that put children at risk of a life-time of poor health and stifled development. Tajikistan Albania Armenia Uzbekistan Turkmenistan Azerbaijan Kazakhstan Kyrgyzstan Romania Georgia Turkey Montenegro Bulgaria Moldova Serbia FYROM Belarus Ukraine Bosnia and Herzegovina Double burden of malnutrition in Europe and Central Asia Region 0 5 10 15 20 25 30 nOverweight (%)nWasting (%)nStunting (%) Source: UNICEF State of the Worlds Children Report, 2016. Enhancing child nutrition 3 Vast returns on investment in anemia preventionInvestments in preventing anemia produce high economic returns. It is estimated that an investment of $600 million USD is needed in the Europe and Central Asia Region to meet the Global Nutrition Target for anemia by 2025. It is estimated that each dollar invested in this package of prevention interventions yields approximately $12 in economic returns. ChallengesThere has been some progress on child nutrition across the Europe and Central Asia Region, but there are still significant disparities that must be addressed. Approximately 68 per cent of children in the Region are deprived of exclusive breastfeeding during their first six months, missing out on the best nutritional start in life. The widespread use of breastmilk substitutes and the commercialization of ready-to-use baby foods also poses an additional threat to their nutritional well-being, undermining breastfeeding in a region with the second lowest rates of exclusive breastfeeding worldwide. Children living in some parts of the Region face greater nutritional deprivation. This includes children living in Tajikistans Gorno-Badakhshan Autonomous Oblast where more than 6 per cent of children under five have acute malnutrition, which threatens their survival. Between 12 and 17 per cent of children in Central Asia, parts of the Caucasus and in Central and Eastern Europe are stunted. The effects of stunting are devastating for a childs development, and can include a lower IQ, a weakened immune system and greater risk of serious diseases later in life. Stunting is caused by the lack of a good quality and diverse diet. It is also connected to high rates of premature births, as well as frequent episodes of acute malnutrition during the first 1,000 days of life. There are serious disparities in childhood stunting within countries: in Bosnia and Herzegovina, Montenegro, Serbia and the North Macedonia, stunting rates in Roma settlements are far above the national average. And in every country across the Region, girls, children living in rural areas and the poorest children are more likely to be stunted than others. School-age children and adolescents also face nutrition challenges. Although nutrition resources and programmes have traditionally been directed towards young children and pregnant women, we do know that obesity among adolescents increased in 16 of the 27 European countries included in the Euro Region of WHO between 2002 and 2014. The number of obese adolescents is continuing to rise in many countries and regions. This is particularly the case in Eastern Europe where, until recently, obesity prevalence was lower than in other parts of Europe. Because of the lack of data on adolescent nutrition, there is often a lack of interest in the issue among policymakers. There is, therefore, limited expertise or resources for adolescent nutrition programmes in the Region, which is a lost opportunity to bolster health, development and economic progress. Child nutrition is not being prioritized across the Region and is, therefore, chronically under-resourced. While most countries in the Region have a national nutrition plan, less than half of these plans have a fully costed-out budget, making it less likely that they will receive funding. Only 12 per cent of countries have dedicated national nutrition managers, and the Regions nutrition workforce is not equipped with the relevant expertise and skills needed to address complex nutrition issues. In addition, nutrition science is not a defined discipline, nor does it have a presence at any level of preventive primary health care or in education and research institutions. In Central Asia and the Caucasus, for example, not one academic institution offers an undergraduate or post graduate degree on nutrition. U NIC EF/U N04 0553 /CYB ERM EDIA Mother Macadan Ana Maria with her daughters Florina, 7 months and Madalina and Ioana, both 10 years old. The family lives in Bacau County, Romania where they are supported through UNICEFs Community Services for Children. The programme provides vulnerable families with a minimum package of services. These services include helping to ensure healthy early childhood development through advice and support on good nutrition, adequate care and access to education. Enhancing child nutrition 4 Our aimUNICEF supports action to improve nutrition from a childs earliest years through adolescence and, in the case of women, motherhood. This approach places children, adolescents and women at the centre of our nutrition advocacy, programming and research. Our ambition is to safeguard the nutrition of children and prevent the double burden of undernutrition and obesity for both girls and boys in every context, aiming for a nutritious and balanced diet for every child. Our ActionsUNICEF supports action to improve nutrition for young children, adolescents and mothers in the Europe and Central Asia Region, aiming to ensure that every child has the best possible nutritional start in life. This requires a focus on the systems that are in place or that need to be created to safeguard the nutrition of each child. UNICEFs systems approach in the Region aims to strengthen the capacity of national and sub-national systems to deliver nutrition-specific interventions to children from birth to adulthood and build programmes that are sensitive to their nutritional needs at every stage of life. Our approach prioritizes four delivery systems that are crucial for the achievement of Sustainable Development Goal 2 End Hunger by 2030: The Primary Health Care system The Food system Early Childhood Development The Education system The Social Protection system The Primary Health Care system We support Infant and Young Child Feeding (IYCF), which includes exclusive breastfeeding and the timely introduction of diverse and healthy complementary feeding (the introduction of other foods and liquids in addition to breastmilk for children aged six months to two years). In addition, UNICEF is also promoting a healthy and diverse diet for the children during their early year before school. This strategy aims to prevent both stunting and obesity in the priority countries. We provide intensive support to Armenia, Azerbaijan, Kyrgyzstan, Tajikistan, Turkmenistan and Uzbekistan that have the Regions highest levels of child undernutrition, including stunting. We also support nutrition counselling during critical periods of life such as pregnancy and the early years, to promote a healthy diet. In addition, in Armenia, Bosnia and Herzegovina, Georgia, Kazakhstan, Montenegro and Serbia, UNICEF supports the promotion of healthy and diverse diet during childrens early years to prevent obesity. The Food system UNICEF supports large-scale food fortification programmes, such as Universal Salt Iodization (USI) and Flour Fortification to control micronutrient deficiencies among children and women, aiming for safer pregnancies and healthier children. We push for the enforcement of USI as well as legislation and programmes to boost the quality and consumption of iodized salt. We also develop standards for countries on the prevention and management of other micronutrient deficiencies such as iron deficiencies and neural tube defects (NTD), such as spina bifida, caused by a lack of folate among children, adolescents and mothers. Tackling iodine deficiencyMany countries in the Europe and Central Asia Region have made considerable advancements in lowering the rates of Iodine Deficiency through Universal Salt Iodization. For example, across the Region, the percentage of households using Iodized salt has increased from 26 percent in 2000 to 55 percent in 2009 and 70 percent in 2017. This significant improvement has been made by legislating mandatory salt iodization while ensuring households have access to appropriately iodized salt. Public-private partnerships have also contributed significantly to this success. Enhancing child nutrition U NIC EF/U N01 4320 0/VA S Ivanka Djordjevic, a visiting nurse with at the Jovanovic family in Pirot, Serbia, meets with Tea, who experienced developmental delays from birth. Ivanka made regular visits to the Jovanovic family to help the parents learn about nutrition and creating a stimulating environment for Tea. Thanks to this intervention, Tea is now meeting her developmental milestones. UNICEF and Serbias Ministry of Health are ensuring visiting nurses like Ivanka can support parents with information on baby development, including nutrition. Child nutrition is about much more than the amount of food on the table. It is about making sure that mothers have the nutrition they need for a healthy pregnancy, that young children have the breastmilk that gives them the best start in life, and that growing children have the range of foods, including micronutrients, that they need for healthy growth and development and to prevent non-communicable diseases in later in life. It is also about prioritizing child nutrition at national level, backed by the necessary resources. Afshan Khan, Regional Director for UNICEF in Europe and Central Asia 5 Enhancing child nutrition 6 On the prevention of obesity, UNICEF advocates for the full implementation of the International Code of Marketing of Breastmilk Substitutes as well as legislation to control the marketing of foods and non-alcoholic beverages to children. We also advocate for increased taxes on sugary and sweet beverages and junk food, as well as subsidies for healthy foods. Early Childhood Development In order to survive, thrive and reach their full potential, all children need nurturing care during their early years. Nutrition, together with good health care, responsive caregiving, safety and security, and opportunities for learning, is a key component of the Nurturing Care Framework which takes a holistic view of the developing child. Developed by WHO, UNICEF, the World Bank and associated partners, the Framework recognizes that parents and families are the primary providers of nurturing care and that it is critical that policies, programmes and services are strengthened to support them in their caregiving role. Optimal nutrition in early childhood, which includes breastfeeding, is critical for healthy growth. At the same time, feeding young children in a responsive and interactive way can contribute to their cognitive, social and emotional development. Caregivers need support not only for what to feed young children but also for how to feed them. The Education system UNICEF works through schools to prevent obesity among school-age children and adolescent girls and boys, to promote physical activity and to create a healthy nutritional environment in schools. Our work includes the promotion of nutritional policies for education and building the capacity of school staff. In addition, the engagement of young people in the promotion of healthy nutrition not only benefits them, but they can also play a key role in sharing their knowledge about healthy diets with their families. The Social Protection system UNICEF advocates for and supports a focus on nutrition as part of wider social protection programmes, where synergies across approaches to tackle poverty and malnutrition can have a more sustainable impact on the well-being of children. For example, we help countries to define what should be included in a basic food basket that should be available for each child to secure optimum nutrition (and that, in turn, helps to determine levels of social benefits), and develop dietary-based guidelines that are sensitive to the nutritional needs of children and adolescents. In addition, capacity building support is provided to countries to enhance public financing for child nutrition. We also focus on the precarious nutrition of children caught in crises, such as conflicts and other emergencies, and those in families affected by HIV. One innovative sub-regional partnership is the Regional Nutrition Capacity Development and Partnership Platform in Central Asia and the Caucasus. This aims to raise the profile of nutrition in national strategies, policies and programmes. This partnership brings on board a wide range of national partners including Ministries of Health, Education, Agriculture and Finance, as well as UN agencies and academia. The platform will develop the building blocks of the food and nutrition sector in the region. It has six main aims Enhance the leadership and governance of the Regions food and nutrition sector. Strengthen region-wide policy advocacy for better financing for nutrition by making the case for investment. Strengthen the nutrition workforce by defining standard organizational structures at the levels of primary healthcare, specialized consultative healthcare, and professional training, as well as equipping workers with the U NIC EF/U N04 0446 /PAN JETA Children eating fruit and vegetables at a food workshop in Foca, Bosnia and Herzegovina. Working with relevant ministries across the country, UNICEF supports the development of nutrition strategies and guidelines for the promotion of healthy lifestyles. Key government commitments on nutrition adopted by every country in the Europe and Central Asia Region in addition to SDG 2The Convention on the Rights of the Child, 1989 Article 24.2(c): States Parties will combat disease and malnutrition, including through the provision of adequate nutritious foods. Article 24.2(e): States Parties will ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition and the advantages of breastfeeding. Enhancing child nutrition 7 An unfinished agenda Child nutrition remains unfinished business across the Europe and Central Asia region. As well as needing more resources, child nutrition urgently needs more attention from policy makers, development and donor partners and communities to push it further up the list of national priorities. UNICEF seeks to leverage increased resources for children across the region, through meaningful partnerships and advocacy. A key priority is strengthening work with all partners, based on a common agenda for children and adolescents. From maternal nutrition to breastfeeding, and from micronutrients to research on adolescent nutritional health, the Region has a lengthy to do list. UNICEF and its partners have already demonstrated the impact of programmes to safeguard and promote child nutrition. The task ahead is to take these programmes to scale across the Region. World Health Assembly (WHA) 2016 members have also committed themselves to six targets for 2025: 1. a 40 per cent reduction in the number of children under five who are stunted 2. a 50 per cent reduction of anaemia in women of reproductive age 3. a 30 per cent reduction in low birth weight 4. no increase in childhood overweight 5. an increase of at least 50 per cent in the rate of exclusive breastfeeding in the first 6 months 6. the reduction and maintenance of childhood wasting to below 5 per cent. The UN Decade of Action on Nutrition 2016 to 2025 UNICEF has committed to support the UN Decade of Action on Nutrition to: Prevent stunting, wasting and all forms of undernutrition in early childhood. Prevent anemia and all forms of undernutrition in school-age children and adolescents Prevent anemia and all forms of undernutrition in pregnant women and lactating mothers. Prevent overweight and obesity in children, adolescents and women. Provide care for children with severe acute malnutrition in early childhood, in all contexts. U NIC EF/U N03 8720 /PIR OZZI Children have a meal in the dining room of an inclusive kindergarten in Yerevan, Armenia. UNICEF has been supporting the national iodization programme in Armenia and in 2006, the country was declared free of iodine deficiency. knowledge, skills and competencies for effective nutrition and food policy and programming. Reinforce a multidisciplinary (i.e., health, agriculture, education, social protection and finance) approach to address the double burden of malnutrition as a major risk factor for non-communicable diseases. Reinforce region-wide collaboration to generate hard evidence and guidelines based on that evidence, and share lessons on what works to inform policymaking and scale up nutrition programmes Improve information and research on nutrition and exchange knowledge across the region and beyond. Enhancing child nutrition 8 UNICEF Europe and Central Asia Regional Office 5-7 avenue de la Paix CH-1211 Geneva 10 Switzerland Telephone: +41 22 909 5111 ecaro@unicef.org www.unicef.org/eca March 2019 U NIC EF/U N05 5280 /LIS TER Amir is in the arms of his mother, Sozul Eisheeva, in the Karakol hospital in Issyk-Kul province, Kyrgyzstan. Between 12 and 17 per cent of children in Central Asia, parts of the Caucasus and in Central and Eastern Europe are stunted. The effects of stunting can include a lower IQ, a weakened immune system and greater risk of serious diseases later in life. UNICEF raises awareness on the importance of breastfeeding for a healthy start in life as well as a diverse and healthy diet for mothers and children. mailto:ecaro%40unicef.org?subject= http://www.unicef.org/eca
Report
30 Июль 2018
Capture the moment
https://www.unicef.org/eca/reports/capture-moment
CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 1 CAPTURETHE MOMENT Early initiation of breastfeeding: The best start for every newborn 2 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING United Nations Childrens Fund (UNICEF) July 2018 Permission is required to reproduce any part of this publication. Permissions will be freely granted to educational or non-profit organizations. Please contact: UNICEF Nutrition Section, Programme Division andData, Analytics and Innovation, Division of Data, Research and Policy3 United Nations PlazaNew York, NY 10017, USA email: nutrition@unicef.org At WHO contact: nutrition@who.int ISBN: 978-92-806-4976-5 For the latest data, please visit:https://data.unicef.org/topic/nutrition/infant-and-young-child-feeding/ Suggested citation:UNICEF, WHO. Capture the Moment Early initiation of breastfeeding: The best start for every newborn. New York: UNICEF; 2018 Notes on the maps in this publication: This map is stylized and not to scale. It does not reflect a position by UNICEF on the legal status of any country or territory or the delimitation of any frontiers. The dotted line represents approximately the Line of Control in Jammu and Kashmir agreed upon by India and Pakistan. The final status of Jammu and Kashmir has not yet been agreed upon by the parties. In addition, the final boundary between the Sudan and South Sudan has not yet been determined, and the final status of the Abyei area has not yet been determined. Photo credits: On the cover: UNICEF/UNI114722/Pirozzi; page 6: UNICEF/UNI95002/Pirozzi; page 12: UNICEF/UNI11851/Pirozzi; page15: UNICEF/UNI164740/Noorani; page 19: UNICEF/UN0156444/Voronin; page20: UNICEF/UNI94993/Pirozzi; page 23: UNICEF/UN0159224/Naftalin; page 26: UNICEF/UNI180267/Viet Hung; page 29: UNICEF/UNI38775/Pirozzi CAPTURE THEMOMENT Early initiation of breastfeeding: The best start for every newborn 4 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING AcknowledgementsThis report was prepared by UNICEFs Nutrition Section (Programme Division), the Data and Analytics Section (Division of Data, Research and Policy) and the Division of Communication, in collaboration with WHOs Department of Nutrition for Health and Development and the Department of Maternal, Newborn, Child and Adolescent Health. Report team UNICEF, Programme Division: Maaike Arts, France Bgin, Willibald Zeck, Carole Leach-Lemens and Victor M. Aguayo. UNICEF, Division of Data, Research and Policy: Vrinda Mehra, Julia Krasevec, Liliana Carvajal-Aguirre, Tyler A. Porth, Chika Hayashi and MarkHereward. WHO: Laurence Grummer-Strawn, Nigel Rollins, and Francesco Branca. Communication teamUNICEF: Julia DAloisio (editing), Yasmine Hage and Xinyi Ge (fact checking), Nona Reuter (design), Irum Taqi, Guy Taylor and Shushan Mebrahtu (advocacy), Kurtis Cooper and Sabrina Sidhu (media). UNICEF gratefully acknowledges the support of the Bill & Melinda Gates Foundation, UNICEF USA and the Government of the Netherlands. UNICEF and WHO would like to extend special thanks to their partners in the Global Breastfeeding Collective for their breastfeeding advocacy efforts. List of abbreviationsBFHI Baby-friendly Hospital Initiative CHW Community health worker DHS Demographic and Health Survey MICS Multiple Indicator Cluster Survey UNICEF United Nations Childrens Fund WHA World Health Assembly WHO World Health Organization CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 5 Contents Starting out right 7 Why an early start to breastfeeding matters 8 Early initiation in numbers 10 What the global and regional data tellus 10 Barriers and missed opportunities 13 Skilled birth attendants 13 Institutional deliveries 14 Caesarean sections 16 Supplemental foods or liquids 18 Clearing the path for breastfeeding 21 Lessons from countries 24 What needs to be done? 27 Annexes 29 Annex 1. Countries with largest changes in prevalence of early initiation of breastfeeding between 2005 and 2017 30 Annex 2. Overview of early initiation of breastfeeding rates by country 31 Annex 3. Notes on the data 39 Endnotes 41 6 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING6 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 7 Starting out right Whether delivery takes place in a hut in a rural village or a hospital in a major city, putting newborns to the breast within the first hour after birth gives them the best chance to survive, grow and develop to their full potential. These benefits make the early initiation of breastfeeding a key measure of essential newborn carein the Every Newborn Action Plan.1 The World Health Organization (WHO) and the United Nations Childrens Fund (UNICEF) recommend that children initiate breastfeeding within the first hour of birth and be exclusively breastfed for the first six months of life meaning no other foods or liquids are provided, including water. From the age of 6 months, children should begin eating safe and adequate complementary foods while continuing to breastfeed for up to two years and beyond.2,3 The early initiation of breastfeeding putting newborns to the breast within the first hour of life is critical to newborn survival and to establishing breastfeeding over the long term. When breastfeeding is delayed after birth, the consequences can be life-threatening and the longer newborns are left waiting, the greater the risk. Improving breastfeeding practices could save the lives of more than 800,000 children under 5 every year, the vast majority of whom are under six months of age. Beyond survival, there is growing evidence that breastfeeding boosts childrens brain development and provides protection against overweight and obesity. Mothers also reap important health benefits from breastfeeding, including a lower risk of breast cancer, ovarian cancer and type 2 diabetes.4 The life-saving protection of breastfeeding is particularly important in humanitarian settings, where access to clean water, adequate sanitation and basic services is often limited. This report presents the global situation of early initiation of breastfeeding and describes trends over the past ten years. Drawing from an analysis of early initiation rates among babies delivered by skilled birth attendants, the report describes key findings and examines the factors that both help and hinder an early start to breastfeeding. The report outlines key learnings from countries where rates of early initiation have improved or deteriorated and concludes with recommendations for policy and programmatic action. No matter where a newborn takes his or her first breath, the desire to give that baby the best start in life is universal. The first hours and days after birth are one of the riskiest periods of a childs life but getting an early start to breastfeeding offers a powerful line ofdefense. 8 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Why an early start to breastfeeding matters When it comes to breastfeeding, timing is everything. Newborns who are put to their mothers breast within the first hour of life are more likely to survive, while those left waiting face life-threatening consequences. Indeed, the longer newborns wait for the first critical contact with their mother, the greater their risk ofdeath. According to a recent meta-analysis of five studies from four countries, including more than 130,000 breastfed newborns, those who began breastfeeding between 2 and 23 hours after birth had a 33 per cent greater risk of dying compared with those who began breastfeeding within one hour of birth. Among newborns who started breastfeeding 24 hours or more after birth, the risk was more than twice as high (see Figure 1).5 The protective effect of early breastfeeding existed independently of whether or not the children were exclusively breastfed. Children who are not put to the breast within the first hour of life also face a higher risk of common infections. In a study of more than 4,000 children in Tanzania, the delayed initiation of breastfeeding was associated with an increased risk of cough and an almost 50 per cent increased risk of breathing difficulties in the first six months of life, compared with newborns who began breastfeeding within the first hour of birth.6 Babies are born ready to breastfeed. The newborn suckling reflex allows infants to suck, swallow and feed immediately after birth. Putting newborns to the breast necessitates skin-to-skin contact, and this closeness between mother and baby in the moments after delivery provides both short- and long-term benefits. Immediate skin-to-skin contact helps regulate newborns body temperature and allows their bodies to be populated with beneficial bacteria from their mothers skin. These good bacteria provide protection from infectious diseases and help build babies immune systems.7 Suckling at the breast triggers the release of prolactin in the mother, an important hormone that stimulates milk production and helps ensure a continuous food supply for the infant.8 The breastmilk consumed by newborns during the first few days called colostrum is extremely rich in nutrients and antibodies and acts as a childs first vaccine, providing a vital shield of protection against disease and death. Skin-to-skin contact immediately after birth until the end of the first breastfeeding has been shown to extend the duration of breastfeeding, improve the likelihood of babies being breastfed at all in the first months of life, and may also contribute to an increase in exclusive breastfeeding.9 Initiating breastfeeding within the first hour of life is no easy feat: mothers cannot be expected to do it alone. They require adequate support and guidance on positioning and feeding their newborns. The appropriate care of both newborn and mother in the moments after birth is critical to ensuring that breastfeeding not only begins but continues successfully. While a small proportion of women cannot breastfeed for medical reasons, most mothers simply need the right support at the right time to ensure that breastfeeding gets an early start. CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 9 <1 hour is optimal For newborns, every minute counts Risk of infection and death increases the lo nger th e del ay Breastfeeding <1 hour after birth saves lives and provides benefits that last a lifetime. Waiting 1 day or more increases their risk of death* by more than 2 times. Waiting 2-23 hours increases their risk of death* by 1.3 times. The longer babies need to wait, the greater the risk. 24h2-23h<1h *Risk of death is presented for the first 28 days of life and in comparison to those who initiated in <1 hour. Figure 1. Visualization of the evidence about the importance of initiating breastfeeding within the first hour of life.Source: Smith Emily R, et al. Delayed breastfeeding initiation and infant survival: A systematic review and meta-analysis. PLoS ONE, vol, 12, no. 7, 25 July 2017. 10 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Early initiation in numbersWhat the global and regional data tellus Most of the worlds newborns are left waiting too long to begin breastfeeding. In 2017 alone, an estimated 78 million newborns had to wait more than one hour to be put to the breast. This means that only about two in five children (42 per cent), the majority born in low- and middle-income countries, were put to the breast within the first hour of life. While this is a slight improvement from 37 per cent in 2005, progress is slow. Early initiation rates vary widely across regions from 35 per cent in the Middle East and North Africa to 65 per cent in Eastern and Southern Africa (see Figure 2). Estimates are not available for any countries in North America or Western Europe (see box 1), highlighting the concerning data gap in many high-income countries. While early initiation rates vary widely across regions, there are no notable differences globally in rates of initiation by the sex of the child, place of residence (rural or urban) or household wealth. <20% 20-39% 40-59% 60-79% 80 No current data No data Country with datafrom 2005-2012 56% 52% 65% 40% 35% 40% 32% 42% Eastern andSouthern Africa Eastern Europeand Central Asia* West andCentral Africa Middle Eastand North Africa* SouthAsia East Asia andthe Pacific Latin America andthe Caribbean* World CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 11 <20% 20-39% 40-59% 60-79% 80 No current data No data Country with datafrom 2005-2012 56% 52% 65% 40% 35% 40% 32% 42% Eastern andSouthern Africa Eastern Europeand Central Asia* West andCentral Africa Middle Eastand North Africa* SouthAsia East Asia andthe Pacific Latin America andthe Caribbean* World Globally, only two out of five newborns are put to the breast within the first hour of life Figure 2. Per cent of newborns put to the breast within one hour of birth, by country and region, 2017.Source: UNICEF global databases, 2018. For notes on the data, see Annex 3. BOX 1 Breastfeeding initiation in high-income countries The early initiation of breastfeeding benefits every newborn no matter where they live. Yet many high-income countries are failing to track this important indicator of child nutrition. Globally, rates of early initiation of breastfeeding are tracked using data from household surveys, such as Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Surveys (MICS). These large-scale surveys assess initiation rates by asking mothers of children under age 2 whether their youngest child was put to the breast within the first hour of life or later. Many low- and middle-income countries undertake such household surveys every four to five years. While many high-income countries track breastfeeding through hospital registries or other data systems, these data are not collected using standard global indicators (such as breastfeeding initiation within the first hour of life) and are therefore not internationally comparable. While it is not possible to report on early initiation rates for the majority of high-income countries, we can report on the number of children who have never been breastfed. In high-income countries, 21 per cent of children are never breastfed, compared with only 4 per cent of children who are never breastfed in low- and middle-income countries.10 This wide gap means that 2.6 million children in high-income countries are missing out completely on the benefits of breastfeeding. 12 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 13 Globally, the proportion of deliveries assisted by a skilled birth attendant has increased from just over 60 per cent in 2000 to nearly 80 per cent in 2016.12 Despite the potential for skilled birth attendants to support breastfeeding initiation, this is not always the case in practice. UNICEFs 2016 report, From the First Hour of Life, showed that the presence of a medical doctor, nurse or midwife did not support the early initiation of breastfeeding in many low- and middle-income countries. In Europe and Central Asia, for example, where almost all births are attended by skilled providers, only 65 per cent of infants delivered by a skilled health provider began breastfeeding within the first hour of life. And in South Asia, the early initiation rate in the presence of a skilled provider was much lower, at 34 per cent.13 According to findings from a review of the latest data between 2010 and 2017 on birth assistance and the timing of breastfeeding initiation in 74 countries, early initiation rates were found to be somewhat similar whether the newborn was delivered with the support of a skilled or unskilled provider. Only 48 per cent of newborns delivered by a skilled birth attendant and 44 per cent of newborns delivered by an unskilled attendant began breastfeeding within the first hour of birth. These findings tell a story of missed opportunities. There is great potential for skilled birth attendants to support mothers in initiating breastfeeding immediately after birth; but better training and support are needed to help them seize these critical moments. Barriers and missed opportunities Why are newborns missing out on breastfeeding in the first hour of life and what obstacles stand in their way? In some cases, outdated practices in health facilities mean that mothers and babies are separated immediately after birth and support and guidance on optimal breastfeeding is limited. In others, the lack of knowledge about breastfeeding after a caesarean section, or cultural practices that involve feeding newborns supplemental foods or drinks, candelay newborns first critical contact withtheir mother.11 In the context of public health and nutrition programmes, missed opportunities refer to moments where mothers and children fail to receive key life-saving interventions, despite having contact with a health provider. Today, more births take place in health institutions with skilled providers than ever before. Yet, most newborns are still not being put to the breast within the first hour of life. These low global rates of early initiation of breastfeeding are evidence of a massive missed opportunityworldwide. Skilled birth attendants Having a skilled attendant present at birth is crucial for the survival and well-being of mother and baby and a measure of the quality of care received. A mothers contact with skilled providers during pregnancy and delivery can provide her with the support needed to carry out the recommended breastfeeding practices, including initiation of breastfeeding within the first hour after birth. 14 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Figure 3. Trends in per cent of infants put to the breast within one hour of birth, by change in institutional delivery rate, 2005 and 2017. The lines on the bars represent confidence intervals. Source: UNICEF Global databases 2018. For notes on the data, see Annex 3. Institutional deliveries Over the past decade, the global rate of institutional deliveries has been rising, with three quarters of all deliveries (75 per cent) now occurring in health facilities. Institutional deliveries take place in a health facility, such as a maternity clinic or a hospital, and are usually performed under the supervision of a skilled birth attendant, suggesting a certain standard of care. However, supporting mothers to bring babies to the breast is not always a routine intervention after birth, and the increase in institutional deliveries has not always translated into improvements in the rate of early initiation of breastfeeding. In a subset of 58 countries with trend data available for both the place of delivery and the rate of early initiation of breastfeeding, the increase in institutional deliveries (from 53 per cent in 2005 to 71 per cent in 2017) is greater than the rise in early initiation rates over the same period (from 45 per cent to 51 per cent). These figures reflect a missed opportunity to support mothers and newborns in initiating breastfeeding immediately after birth. The only significant improvement in early initiation rates since 2005 can be seen among the group of countries where institutional deliveries increased by more than 20 percentage points (see Figure 3). The rise in breastfeeding initiation rates among this group of countries is primarily driven by low-income countries, where early initiation rates increased by 15 percentage points, compared with an increase of 8 percentage points in lower- middle-income countries. While this increase in early initiation rates is 2017 2005Per cent of newborns put to the breast within one hour of birth Change in institutional delivery rate, 20052017 Minimal/No increase<10 percentage point Moderate increase10 to 19 percentage point Large increase20 percentage point 0 10 20 30 40 50 60Percentage Early initiation rates have only improved significantly among the group of countries with a large increase in institutional deliveries 15 16 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING important, the rate of early initiation in countries with rising numbers of institutional deliveries is still discouragingly low, with only half of newborns being put to breast in the first hour of life. The effect of increasing institutional delivery rates on early initiation of breastfeeding depends on national and facility-based policies on the care of mothers and newborns, as well as the skills and commitment of the health professionals working in these facilities. An increase in institutional deliveries can improve early initiation rates when national or facility-based policies emphasize immediate skin-to-skin contact and provide staff trained to support. However, an increase in institutional deliveries can also negatively influence rates of early initiation if staff members are not appropriately trained and facilities maintain outdated policies and practices that create barriers for breastfeeding such as separating newborns and mothers without medical justification or routinely providing liquids or foods to the newborn.14 Caesarean sections Globally, caesarean sections have increased from an average of 13 per cent in 2005 to more than 20 per cent in 2017. All regions have witnessed a large increase in rates of caesarean sections, apart from Sub-Saharan Africa, where rates have remained somewhat unchanged.15 Access to surgical deliveries, where medically needed, is a critical part of ensuring safer deliveries for newborns and their mothers. Yet the rising rates of elective caesarean section worldwide have had consequences on the early initiation of breastfeeding. Several studies show that surgical deliveries can reduce the likelihood of immediate skin-to-skin contact and the early initiation of breastfeeding.16,17,18 In one study, women who ultimately delivered by caesarean section after an unsuccessful trial of labour were more likely to initiate breastfeeding within the first hour after birth than women with a scheduled repeat caesarean section.*,19 An analysis of key factors linked to early initiation rates among babies delivered by a skilled birth attendant showed that the type of delivery can significantly affect when the newborn is put to the breast. Consistently, across all 51 countries studied, early initiation rates among newborns delivered by vaginal birth were more than twice as high as early initiation rates among newborns delivered by caesarean section (see Figure 4). A statistically significant difference was seen in all but 4 of the 51 countries studied. These findings are concerning because immediate skin-to-skin contact and the initiation of breastfeeding are especially important for babies born by caesarean section. The close contact between mother and baby protects newborns with good bacteria from their mothers body a critical step in developing the babys gut health and immune system.20 With a vaginal delivery, this process likely occurs in the birth canal. There is some evidence that immediate or early skin-to-skin contact after a caesarean section can help increase early breastfeeding initiation and decrease the time to the first breastfeed.21 * Repeat caesarean section refers to a caesarean section in a woman whose previous delivery was via caesarean section. MalawiRwanda KyrgyzstanMozambique NamibiaBurundi HondurasMyanmar ZimbabweZambiaTurkeyNiger LesothoTogo CambodiaPeru KenyaLiberiaGhana United Republic of TanzaniaDominican Republic NepalEthiopiaUganda BeninDemocratic Republic of the Congo BangladeshPhilippines YemenTajikistanIndonesia AngolaSierra Leone HaitiGambia IndiaMexico Burkina FasoCameroon AfghanistanNigeria ArmeniaEgypt ComorosGabon Cte d'IvoireSenegal CongoJordan PakistanGuinea Percentage Caesarean sectionVaginal delivery 0 20 40 60 80 100 Figure 4. Per cent of newborns put to the breast within one hour of birth, by type of delivery (vaginal delivery or caesarean section), by country, 2017.Source: UNICEF Global databases 2018. For notes on the data, see Annex 3. In nearly every country, early initiation rates are significantly lower among newborns delivered by caesarean section 17 18 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING With the right support, most newborns delivered by caesarean section can be put to the breast within the first hour after birth. However, in practice, women who deliver by caesarean section often face important challenges in initiating breastfeeding, such as managing the effects of anesthesia, recovering from surgery and finding help to hold the baby safely. Key actions to facilitate skin-to-skin contact and initiation of breastfeeding immediately after birth include having an appropriate policy and protocol in the maternity facility, building the skills of staff and involving fathers in breastfeeding support.22 Figure 5. Per cent of newborns put to the breast within one hour of birth, by type of supplemental feeding in the first three days of life, by World Bank country-income grouping, 2017.Source: UNICEF Global databases 2018. For notes on the data, see Annex 3. Breastmilk only Non-milk-based (e.g., water, sugar water, tea, honey) Milk-based (e.g., infant formula, animal milk) 0 10 20 30 40 50 60 70 80 Low-incomecountries Lower-middleincome countries Upper-middleincome countries Allcountries n=18 n=21 n=6 n=45 Perc enta geSupplemental foods or liquids Giving newborns foods or drinks in the first days of life is common in many parts of the world and is often linked to cultural norms, family practices and health system policies and procedures that are not based on scientific evidence. These practices and procedures vary by country and may include discarding colostrum or having an elder family member give the newborn a specific food or liquid, such as honey, or having a health professional routinely give the newborn a specific liquid, such as sugar water or infant formula. These practices can delay a newborns first critical contact with his or her mother.23, 24 ,25 Early initiation rates are nearly twice as high among newborns whoreceive only breastmilk, compared with newborns who receive milk-based supplemental feeds in the first three days of life CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 19 Figure 5 shows that among newborns who received milk-based liquids in the first three days after birth, nearly two in three babies waited one hour or longer to be put to the breast. This finding is based on an analysis of 51 countries with available data on the timing of initiation and the receipt of liquids and foods other than breastmilk. Conversely, close to 60 per cent of newborns receiving only breastmilk in their first days of life were put to the breast within the first hour. The rates of early initiation were slightly better among newborns receiving water-based supplementary feeds than among newborns receiving other supplementary feeds, but still significantly lower than among newborns receiving only breastmilk. 20 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 21 programme and policy-related factors that improve the chances of optimal breastfeeding practices, including starting breastfeeding in the first hour of life.27 The analysis found that a combination of interventions had the greatest impact on the early initiation of breastfeeding, leading to a significant 85 per cent increase in rates. These interventions comprised the home and family environment (peer support, one-to-one counselling, home visits or telephone and home support by father or grandparent) and health systems and services (including the BFHI). Access to antenatal care, where mothers are counselled about the initiation of breastfeeding, also has a positive effect on its practice.28, 29, 30, 31 The more antenatal visits and professional antenatal care a mother receives, the greater the probability that she will initiate breastfeeding within the first hour of her childs life. There is a need to better institutionalize the protection, promotion and support of breastfeeding in maternity facilities, particularly in the first days of life. A systematic review of the Baby-friendly Hospital Initiative (BFHI) in 19 countries showed that facilities adherence to the BFHIs Ten Steps to Successful Breastfeeding can increase breastfeeding rates, including theearly initiation of breastfeeding (see box 2). Efforts to avoid supplementing newborns with liquids or foods other than breast milk (step 6) were crucial to successful breastfeeding outcomes. This may be because of the detrimental impact of supplements on breastfeeding success, or because carrying out this step requires other steps to be in place, including having a policy to support breastfeeding and putting the newborn to the mothers breast in the first hour of life.26 Breastfeeding can be challenging to learn, particularly in the first moments after birth. But having the right policies, programmes and people in place provides a strong support network for mothers. A systematic review and meta-analysis conducted in 2015 identified Clearing the path for breastfeeding 22 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING The Baby-friendly Hospital Initiative, launched in 1991 and updated in 2018, ensures adequate protection, promotion and support for breastfeeding in facilities providing maternity and newborn care. The BFHIs Ten Steps to Successful Breastfeeding are key to improving the early initiation of breastfeeding and to supporting optimal breastfeeding practices more generally. The updated BFHI guidance emphasizes the importance of integrating the Ten Steps into other initiatives to improve the quality of care around birth and encourages countries to achieve sustainable, universal coverage of breastfeeding interventions. Critical management procedures 1a. Comply fully with the International Code of Marketing of Breast-milk Substitutes and relevant World Health Assembly (WHA) resolutions (the Code). 1b. Have a written infant feeding policy that is routinely communicated to staff and parents. 1c. Establish ongoing monitoring and data management systems. 2. Ensure staff has sufficient knowledge, competence and skills to support breastfeeding. Key clinical practices 3. Discuss the importance and management of breastfeeding with pregnant women and their families. 4. Facilitate immediate and uninterrupted skin-to-skin contact and support mothers to initiate breastfeeding as soon as possible after birth. 5. Support mothers to initiate and maintain breastfeeding and manage common difficulties. 6. Do not provide breastfed newborns any food or fluids other than breast milk, unless medically indicated. 7. Enable mothers and their infants to remain together and to practise rooming-in 24 hours a day. 8. Support mothers to recognize and respond to their infants cues for feeding. 9. Counsel mothers on the drawbacks of feeding bottles, teats and pacifiers. 10. Coordinate discharge so that parents and their infants have timely access to ongoing support and care. BOX 2 The Baby-friendly Hospital Initiative Ten Steps to Successful Breastfeeding(revised 2018) 23 24 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Tracking the performance of breastfeeding programmes at country level provides evidence of successes and challenges in improving the early initiation of breastfeeding. The examples below, drawn from the experiences of UNICEF country offices, offer important learnings for countries. In Cambodia, an increase in the rates of early initiation of breastfeeding from 6 per cent in 1998 to 63 per cent in 2014 appears to be the result of awareness raising and promotional campaigns in communities, along with investments in improved quality of care around the time of delivery. The percentage of deliveries by a skilled birth attendant increased from 44 per cent in 2005 to 89 per cent in 2014, while institutional deliveries increased from 22 per cent to 83 per cent during the same period. Between 2000 and 2010, the use of supplements in the first three days after birth decreased considerably from 93 per cent to 15 per cent in public facilities, from 91 per cent in 2000 to 34 per cent in 2010 in private facilities and from 94 per cent to 21 per cent for home deliveries.32 In the Dominican Republic, while caesarean section rates almost doubled, increasing from 31 per cent in 2002 to 58 per cent in 2014, the rate of early initiation of breastfeeding decreased from 62 per cent to 38 per cent during the same period. Since 2014, the Ministry of Health and its partners have increased support for the Mothers and Newborns in Good Care initiative, which integrates the promotion, protection and support of breastfeeding as a part of the evidence-based interventions to reduce preventable maternal and newborn deaths. Monitoring the BFHI standards and the Code remains a challenge, particularly in private facilities, where about 40 per cent of deliveries take place, and where 86 per cent of deliveries take place via caesarean section. In Egypt, caesarean section rates more than doubled between 2005 and 2014, increasing from 20 per cent to 52 per cent. During the same period, rates of early initiation of breastfeeding decreased from 40 per cent in 2005 to 27 per cent in 2014. While support for the early initiation of breastfeeding is available in facilities implementing the BFHI where staff are trained and practices are monitored, there are many facilities that are not baby-friendly and lack trained staff and adequate monitoringsystems. In Montenegro, standard postdelivery practices include a two-hour observation period during which breastfeeding is not usually initiated. While the rate of caesarean sections increased from 12 per cent in 200733 to 20 per cent in 2013,34 the rates of early initiation of breastfeeding decreased from 25 per cent in 2005 to 14 per cent in 2013.35 Lessons from countries CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 25 The government and its partners are currently working to build the capacities of health professionals, with a focus on breastfeeding. The promotion of breastfeeding and baby-friendly hospitals is also done though social media.Plans are underway for a national BFHI programme to be initiated shortly in all maternity wards of the country. In Rwanda, the proportion of deliveries with skilled birth attendants increased from 39 per cent in 2005 to 91 per cent in 2014, with nearly all births in health facilities being assisted by skilled birth attendants. At the same time, the country implemented an intensive and sustained communication campaign on feeding practices, including early initiation of breastfeeding and the BFHI. This resulted in increased awareness about breastfeeding among decision-makers, leaders and communities, and increased investments in building the capacities of community health workers to support breastfeeding. Rwanda now has 45,000 community health workers who counsel mothers about adequate feeding practices and safe deliveries. The rates of early initiation of breastfeeding also increased from 64 per cent in 2005 to 81 per cent in 2014. Between 2010 and 2013, the rate of caesarean sections nearly doubled from 7 per cent to 15 per cent, yet this jump did not impact early initiation. This finding reveals the power of establishing a cadre of well-trained health professionals to support early initiation. In Serbia, there was a steady decline in early initiation rates from 17 per cent in 2005 to just under 8 per cent in 2010. Based on these findings, the government took measures to improve the quality of care around birth and the Ministry of Health and its partners increased support to the BFHI, engaged neonatologists in discussions about improving the BFHI, organized events for pediatricians and other specialists and collaborated with mother support groups. By 2014, the rate of early initiation of breastfeeding had increased to 51 per cent in the country. By 2017, Serbia had integrated the BFHI criteria into its hospital accreditation standards, making the programme more sustainable and easier to scale-up to universal coverage. In Viet Nam, the rate of early initiation of breastfeeding decreased from 44 per cent in 2006 to 27 per cent in 2014, in the context of near universal institutional deliveries (which reached 94 per cent in 2014, while caesarean section rates rose from 10 per cent in 2002 to 28 per cent in 2014). In response, the Ministry of Health approved national Guidelines for essential care of the mother and newborn during and immediately after a caesarean section in November 2016.36 The guidelines emphasize skin-to-skin contact immediately after birth and support for the initiation of breastfeeding within the first hour after birth. 26 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 27 What needs to be done? Too many newborns are not put to the breast in the first hour of life. While access to maternity facilities and skilled birth attendants at delivery have the potential to improve childrens and mothers chances of survival and wellbeing, the quality of care provided is often inadequate and missed opportunities leave far too many newborns waiting for the first critical contact with their mother. The early introduction of supplementary foods and liquids and non-indicated caesarean sections are inappropriate practices that may neglect or disrupt support for the early initiation of breastfeeding. National and facility policies to support breastfeeding around the time of birth are inadequate and the capacities of skilled birth attendants are often insufficient. The following recommendations for action, applicable in development and humanitarian settings, are based on the Global Breastfeeding Collectives framework of key policy actions for improving breastfeeding:37 1) Increase funding to strengthen the protection, promotion and support of breastfeeding programmes, including for interventions impacting the early initiation of breastfeeding. 2) Fully implement the International Code of Marketing of Breast-milk Substitutes and relevant World Health Assembly Resolutions through strong legal measures that are enforced and independently monitored by organizations free from conflicts of interest. This includes monitoring the compliance of health professionals and health facilities. 3) Enhance the quality of care in facilities by establishing policies on immediate skin-to-skin contact and early initiation of breastfeeding after birth as part of national policies on maternal and newborn care, along with other evidence-based recommendations, including those in the WHO/UNICEF Ten Steps to Successful Breastfeeding.38,39, 40,41 Support for the early initiation of breastfeeding should be reflected in all newborn care policies and cover all situations, including caesarean sections and small and pre-term newborns. National policies should discourage the provision of foods or liquids to breastfed newborns in the first days of life, unless such items are needed for medical reasons. Governments and health professionals need to work together to reduce unnecessary caesarean sections through a combination of improved policies and appropriate incentive schemes. Giving all newborns an early start to breastfeeding requires action on the part of multiple actors particularly governments, health care institutions and health care workers. 28 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Support for skin-to-skin contact and early initiation of breastfeeding should be integrated into the pre-service training of health care workers, including those targeting physicians, nurses, midwives and other birth attendants. In-service capacity building to bridge knowledge and skills gaps needs to be supported where needed. 4) Improve access to skilled breastfeeding counselling for all mothers, wherever they deliver their babies. Health professionals should prepare and counsel women undergoing a caesarean section on initiating breastfeeding. 5) Strengthen links between health facilities and communities, and encourage community networks that protect, promote and support breastfeeding. Through behaviour change strategies, encourage mothers and families to demand support for the early initiation of breastfeeding from birth attendants through behavioural change communication strategies. Establish and support social accountability systems in which mothers and families can provide feedback about the quality of care and hold providers accountable. 6) Develop monitoring systems that track the progress of policies, programmes and funding towards improving early initiation of breastfeeding. This includes both ensuring the availability of country level data on early initiation of breastfeeding and data on enabling factors, such as the number of maternity facilities implementing the Ten Steps. Facilities should monitor their own practices in this area as part of quality improvement approach. Support for improving the early initiation of breastfeeding is a life-saving intervention, with the power to protect newborns when they are most vulnerable. Mothers and newborns who get an early start to breastfeeding are more likely to continue breastfeeding, paving the way for a successful breastfeeding relationship throughout the critical first years of a childslife. Governments, policy makers and health providers must together do much more to protect, promote and support the early initiation of breastfeeding. By strengthening the capacities of health workers, adopting protective policies and making mothers and newborns a priority, we can capture the moment and give every newborn the best startto life. Annexes 30 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Perc enta ge Countries where prevalence ofearly intiation has gone up Countries where prevalence ofearly intiation has gone down 68.7 36.6 53.0 41.6 50.8 21.117.5 19.6 60.5 38.1 44.0 26.5 37.2 18.6 25.0 14.4 0 10 20 30 40 50 60 70 Baseline estimate Latest estimate MontenegroJordanViet NamDominicanRepublic BurkinaFaso SerbiaBelarusGeorgia ANNEX 1.Countries with largest changes in prevalence of early initiation of breastfeeding between 2005 and 2017 Trends in per cent of newborns put to the breast within one hour of birth, by country, around 2005 and around 2017.Source: UNICEF Global databases 2018. For notes on the data, see Annex 3. CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 31 Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Afghanistan 2015 40.9 57 Albania 2008 43.4 Algeria 2012 35.7 2006 49.5 Andorra no data Angola 2015 48.3 50 2007 54.9 Anguilla no data Antigua and Barbuda no data Argentina 2011 52.7 Armenia 2015 40.9 58 2005 32.2 Australia no data Austria no data Azerbaijan 2013 19.7 74 2006 30.7 Bahamas no data Legend for categories: Increase: 8 percentage point increase Minimal/no change: <8 percentage point change Decrease: 8 percentage point decrease ANNEX 2.Overview of early initiation of breastfeeding rates by country i Latest estimate refers to the most recent estimate from 2000 onwards availale in the UNICEF global database. Regional aggregates and rank were based on countries with recent estimates (2013-2018) only. Trends were presented if a baseline point between 2003 and 2008 was available in addition to a recent (2012-2018) estimate. ii A baseline estimate is presented if the latest estimate was between 2012 and 2018 and if a point between 2003 and 2008 was also available; else blank. iii Trends are presented for a subset of 77 countries with a recent (2012-2018) latest estimate and where a baseline (2003-2008) was also available. iv Rank based on a subset of 76 countries with recent (2013-2018) data. 32 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Bahrain no data Bangladesh 2014 50.8 43 2006 35.6 Barbados 2012 40.3 Belarus 2012 53.0 2005 21.1 Belgium no data Belize 2015 68.3 20 2006 50.4 Benin 2014 46.6 53 2006 54.1 Bhutan 2015 77.9 9 Bolivia (Plurinational State of) 2016 55.0 33 2008 62.8 Bosnia and Herzegovina 2011 42.3 Botswana 2007 40.0 Brazil 2006 42.9 British Virgin Islands no data Brunei Darussalam no data Bulgaria no data Burkina Faso 2014 41.6 55 2006 19.6 Burundi 2016 85.0 3 Cabo Verde 2005 72.7 Cambodia 2014 62.6 26 2005 35.5 Cameroon 2014 31.2 67 2006 19.6 Canada no data Central African Republic 2010 43.5 Chad 2014 23.0 73 2004 32.4 Chile no data China 2013 26.4 71 2008 41.0 Colombia 2009 63.4 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 33 Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Comoros 2012 33.7 Congo 2014 25.3 72 2005 34.4 Cook Islands no data Costa Rica 2011 59.6 Cte dIvoire 2016 36.6 63 2006 24.9 Croatia no data Cuba 2014 47.9 51 2006 70.2 Cyprus no data Czechia no data Democratic Peoples Republic of Korea 2012 28.1 Democratic Republic of the Congo 2013 51.9 39 2007 48.0 Denmark no data Djibouti 2012 52.0 Dominica no data Dominican Republic 2014 38.1 62 2007 60.5 Ecuador 2012 54.6 Egypt 2014 27.1 69 2005 40.1 El Salvador 2014 42.0 54 2008 32.8 Equatorial Guinea no data Eritrea 2010 93.1 Estonia no data Eswatini 2014 48.3 49 2006 59.1 Ethiopia 2016 73.3 14 2005 66.2 Fiji 2004 57.3 Finland no data France no data Gabon 2012 32.3 34 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Gambia 2013 51.5 40 2005 47.7 Georgia 2012 68.7 2005 36.6 Germany no data Ghana 2014 55.6 32 2006 35.2 Greece no data Grenada no data Guatemala 2014 63.1 25 2008 55.5 Guinea 2016 33.9 64 2005 37.9 Guinea-Bissau 2014 33.7 65 2006 22.6 Guyana 2014 49.2 48 2006 43.1 Haiti 2012 46.7 2005 42.9 Holy See no data Honduras 2011 63.8 Hungary no data Iceland no data India 2015 41.5 56 2005 23.1 Indonesia 2012 49.3 2007 40.2 Iran (Islamic Republic of) 2010 68.7 Iraq 2011 42.8 Ireland no data Israel no data Italy no data Jamaica 2011 64.7 Japan no data Jordan 2012 18.6 2007 37.2 Kazakhstan 2015 83.3 4 2006 64.2 Kenya 2014 62.2 27 2003 49.6 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 35 Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Kiribati no data Kuwait no data Kyrgyzstan 2014 82.5 5 2005 64.7 Lao Peoples Democratic Republic 2011 39.1 Latvia no data Lebanon 2004 41.3 Lesotho 2014 65.3 24 2004 56.8 Liberia 2013 61.2 29 2006 66.2 Libya no data Liechtenstein no data Lithuania no data Luxembourg no data Madagascar 2012 65.8 2003 60.6 Malawi 2015 76.2 11 2006 58.3 Malaysia no data Maldives 2009 60.5 Mali 2015 53.2 37 2006 44.4 Malta no data Marshall Islands 2007 72.5 Mauritania 2015 61.8 28 2007 44.3 Mauritius no data Mexico 2015 51.0 42 Micronesia (Federated States of) no data Monaco no data Mongolia 2013 71.1 16 2005 77.5 Montenegro 2013 14.4 76 2005 25.0 Montserrat no data 36 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Morocco 2010 26.8 Mozambique 2013 69.0 18 2003 63.8 Myanmar 2015 66.8 21 Namibia 2013 71.2 15 2006 67.3 Nauru 2007 76.4 Nepal 2016 54.9 34 2006 35.5 Netherlands no data New Zealand no data Nicaragua 2011 54.4 Niger 2012 52.9 2006 46.6 Nigeria 2016 32.8 66 2007 29.9 Niue no data Norway no data Oman 2014 71.1 17 Pakistan 2013 18.0 75 2006 25.9 Palau no data Panama 2013 47.0 52 Papua New Guinea no data Paraguay 2016 49.5 47 2008 47.1 Peru 2016 54.8 35 2003 47.4 Philippines 2013 49.7 46 2003 46.0 Poland no data Portugal no data Qatar 2012 33.5 Republic of Korea no data Republic of Moldova 2012 60.9 2005 66.6 Romania 2004 57.7 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 37 Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Russian Federation 2011 25.0 Rwanda 2014 80.5 7 2005 63.9 Saint Kitts and Nevis no data Saint Lucia 2012 49.6 Saint Vincent and the Grenadines no data Samoa 2014 81.4 6 San Marino no data Sao Tome and Principe 2014 38.3 61 2006 35.3 Saudi Arabia no data Senegal 2016 29.4 68 2005 22.6 Serbia 2014 50.8 44 2005 17.5 Seychelles no data Sierra Leone 2013 53.8 36 2005 33.1 Singapore no data Slovakia no data Slovenia no data Solomon Islands 2015 78.9 8 2006 75.0 Somalia 2009 23.4 South Africa 2003 61.1 South Sudan 2010 50.5 Spain no data Sri Lanka 2016 90.3 1 2006 79.9 State of Palestine 2014 40.8 59 2006 64.6 Sudan 2014 68.7 19 Suriname 2010 44.7 Sweden no data Switzerland no data 38 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING Countries and territoriesLatest estimatei Baseline estimate for trend ii Trendiii CategoryYear Early initiation of breastfeeding (%) Rank iv Year Early initiation of breastfeeding (%) Syrian Arab Republic 2009 45.5 Tajikistan 2012 49.6 2005 60.9 Thailand 2015 39.9 60 2005 49.6The former Yugoslav Republic of Macedonia 2011 21.0 Timor-Leste 2016 75.2 12 2003 46.9 Togo 2013 60.6 30 2006 35.8 Tokelau no data Tonga 2012 79.1 Trinidad and Tobago 2006 41.2 Tunisia 2011 39.9 Turkey 2013 49.9 45 2003 52.3 Turkmenistan 2015 73.4 13 2006 59.8 Turks and Caicos Islands no data Tuvalu 2007 15.0 Uganda 2016 66.1 22 2006 41.8 Ukraine 2012 65.7 2005 35.9 United Arab Emirates no data United Kingdom no data United Republic of Tanzania 2015 51.3 41 2004 57.6 United States no data Uruguay 2013 76.5 10 Uzbekistan 2006 67.1 Vanuatu 2013 85.4 2 2007 71.9 Venezuela (Bolivarian Republic of) no data Viet Nam 2013 26.5 70 2006 44.0 Yemen 2013 52.7 38 2006 29.6 Zambia 2013 65.8 23 2007 55.6 Zimbabwe 2015 57.6 31 2005 68.2 CAPTURE THE MOMENT: EARLY INITIATION OF BREASTFEEDING 39 ANNEX 3.Notes on the data A. General Notes A.1 Early Initiation of Breastfeeding: Indicator DefinitionNumerator:
Report
01 Январь 2016
Adolescents Living with HIV
https://www.unicef.org/eca/adolescents-living-hiv
unite for children Adolescents Living with HIV: Developing and Strengthening Care and Support Services Adolescents Living with HIV: Commissioned by the UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States (UNICEF RO CEECIS) The opinions expressed in this publication are those of the contributors, and do not necessarily reflect the policies or views of UNICEF. The designations employed in this publication and the presentation of the material do not imply on the part of UNICEF the expression of any opinion whatsoever concerning the legal status of any country or territory or of its authorities or the delimitations of its frontiers. The subjects in the photographs used throught this publication are models who have no relation to the content. Extracts from this publication may be freely reproduced with due acknowledgement using the following reference: UNICEF, 2016. Adolescents Living with HIV: Developing and Strengthening Care and Support Services, Geneva: UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States (CEECIS). For further information and to download this or any other publication, please visit the UNICEF CEECIS website at www.unicef.org/ceecis. All correspondence should be addressed to:UNICEF Regional Office for CEECISHIV Section Palais des NationsCH 1211 Geneva 10Switzerland Copyright: 2016 United Nations Childrens Fund (UNICEF) Adolescents Living with HIV: Commissioned by the UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States (UNICEF RO CEECIS) Developing and Strengthening Care and Support Services unite for children Acknowledgements This handbook was written by consultants Magda Conway and Amanda Ely from the UK Childrens HIV Association (CHIVA) working in consultation with a number of partners and collaborators. The authors would like to thank Nina Ferencic, Ruslan Malyuta, Marie-Christine Belgharbi in UNICEF CEE/CIS Regional office for their trust and support with this work. They would like to thank their colleagues from health and social care in the UK who have generously given their time and expertise to support the development of this resource. Special thanks to: Dr Caroline Foster, Paediatric Consultant (Imperial College Healthcare NHS Trust); Susan McDonald, HIV Clinical Nurse Specialist (Imperial College Healthcare NHS Trust); Dr Tomas Campbell, Clinical Psychologist; Jill Hellings, Children and Families Social Worker (Barnardos); Sarah Lennox, Children and Families Social Worker (Barnardos); Sheila Donaghy, Paediatric HIV Clinical Nurse Specialist (St. Georges University Hospital) and Michelle Overton, support worker (Faith in People). Many thanks to colleagues and contributors who reviewed and provided valuable comments to the online draft publication, especially Dr. Nadia L. Dowshen (The Childrens Hospital of Philadelphia), Sara Paparini (London School of Hygiene and Tropical Medicine), Nisso Kasymova and Victoria Lozyuk from the (UNICEF country offices in Tajikistan and Belarus). Thank you to the young adults from UK who shared their experiences of growing up with HIV on the videos, and those that attend the Barnardos support service in Manchester for participating in group scenes. Special thanks goes to the all the HIV positive children and adolescents we have met over the years, who have shared their views and experiences and had a profound effect on the way we approach our work. FOREWORD In 2015, an estimated two million adolescents (10-19 year olds) were living with HIV worldwide and every hour an estimated 26 adolescents were newly infected with HIV. Adolescents living with HIV have mostly the same dreams and hopes as all other adolescents. Although they often face a number of health challenges in their day-to-day lives, many of the issues faced by adolescents living with HIV are linked to broader psycho-social aspects of their lives. In many ways, their experience of living with HIV provides the best guidance on how to support them to realize their rights and their full potential. The continuing high rates of new HIV infections and growing AIDS mortality among adolescents suggests that a change in adolescent programming is required. The voices and concerns of adolescents and young people need to be heard by care providers. Youth-centred and youth-led approaches that engage young people in the planning, implementation and evaluation of programmes are needed. Policy makers should put more effort into understanding the distinctiveness of adolescence in the context of HIV and make longer term commitments to funding and programme support. There is an increased need for capacity building and trained staff. The All In initiative launched by UNICEF and partners to end adolescent AIDS provides a platform for dialogue with young people, policy makers, care providers, community leaders and other stakeholders for action supporting adolescents. This handbook, with inputs from leading experts who have trained hundreds of professionals, provides indispensable tools for strengthening the management and care of adolescents living with HIV. Clinicians and social workers are provided with step by step guidance on how to work with adolescents and parents and increase their skills-sets to help them engage with and retain adolescents living with HIV in support services. It describes the challenges of working with families and care givers, promotes holistic models of child-centered assessment and practice, communication with families and children, with a focus on naming HIV, promoting adherence to treatment and ongoing conversations and supportive dialogue involving HIV positive adolescents as partners and leaders in their own care. Designed for optimal learning, the handbook allows to choose written, oral, visual, individual, and group strategies that best suit different learning styles. This handbook is about adolescents and it is for professionals who work with them. It is meant to be a living document that adapts as new information and evidence emerges and it hopes to support professionals to build their confidence, skills and better connections with adolescents living with HIV. UNICEF HIV Team Definitions Adolescent Aged 10-19 years of age. Parent Biological parent, step-parent, or adoptive parent. Carer Person who is primary carer of the child, but not their parent. This can be someone who is a legal guardian, such as a family member or state provided carer, such as a foster carer. Young adult Aged 19-25 years of age. Acronyms ART Anti-retroviral therapy ALHIV Adolescents living with HIV CEE/CIS central and eastern Europe and Commonwealth of Independent States CHIVA Childrens HIV Association for the UK & Ireland C&ALHIV Children and adolescents living with HIV UNICEF United Nations Childrens Fund UNCRC United Nations Convention on the Rights of the Child WHO World Health Organization 7 Adolescents Living with HIV:Developing and Strengthening Care and Support Services CONTENTS INTRODUCTION..................................................................................................................................9 The global context ............................................................................................................................9 Adolescents and HIV ........................................................................................................................10 SECTION ONE: CLINICAL ISSUES FOR ALHIV ............................................................................13 1.1 The brain and neurocognitive function ...................................................................13 1.2 Adherence ..........................................................................................................................14 1.3 Relationships and sexual health education ............................................................15 1.4 Onward disclosure of HIV .............................................................................................16 1.5 Transition to adult care ..................................................................................................18 SECTION TWO: THE PSYCHOSOCIAL NEEDS OF C&ALHIV ..................................................19 2.1 Growing up with HIV .......................................................................................................20 2.2 Managing HIV during adolescence ...........................................................................25 2.3 HIV and the family context ...........................................................................................33 SECTION THREE: VULNERABLE ADOLESCENTS WITH BEHAVIOURALLY ACQUIRED HIV ..................................................................................................36 3.1 Insecurely housed or living on the streets ..............................................................37 3.2 Sexually exploited ALHIV and involved in transactional sex ............................38 3.3 ALHIV who misuse drug and/or alcohol ..................................................................39 3.4 Adolescent men who have sex with men (AMSM)...............................................42 3.5 Engaging with health and managing HIV ...............................................................42 3.6 Ensuring inclusion of hard-to-reach groups ..........................................................44 SECTION FOUR: APPROACHES TO PRACTICE AND POLICIES .............................................45 4.1 Communication ................................................................................................................46 4.2 Talking to children about their HIV diagnosis ........................................................47 4.3 Confidentiality ...................................................................................................................51 4.4 Safeguarding children and child protection ..........................................................52 4.5 Managing behaviour ......................................................................................................55 4.6 Ensuring equality and inclusion .................................................................................58 8 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 4.7 One-to-one work ..............................................................................................................59 4.8 Group work .........................................................................................................................61 4.9 General practice points ..................................................................................................63 SECTION FIVE: EXAMPLES OF UK PRACTICE ............................................................................67 5.1 Peer support groups .......................................................................................................67 5.2 Residential interventions ..............................................................................................68 5.3 Occasional sessions attached to clinics....................................................................70 5.4 Therapeutic creative activities .....................................................................................70 5.5 Advocacy and influencing policy ...............................................................................71 5.6 On-line activities ...............................................................................................................72 5.7 Consultation with ALHIV ...............................................................................................73 REFERENCES ........................................................................................................................................ 75 APPENDIX ONE: Activity sheets to use when working with C&ALHIV ...........................77 APPENDIX TWO: Further reading.................................................................................................131 APPENDIX THREE: Maslows Hierarchy of Needs ....................................................................133 APPENDIX FOUR: Four principles of motivational interviewing ......................................135 APPENDIX FIVE: Policy documents and practice tools.........................................................136 9 Adolescents Living with HIV:Developing and Strengthening Care and Support Services INTRODUCTIONThe global context This handbook has been written for practitioners working directly with C&ALHIV and for policy makers and management to help develop services and protocols. To that end, it includes policy and practice guidance for the development of services, practice models and practical examples. The global experience of HIV offers many shared elements and this handbook reflects these, setting out practical guidance and tools that can be used in different settings. Commissioned by UNICEF Regional Office for CEE/CIS as part of a wider project to assist the development of support provision for C&ALHIV in that region, this handbook has been produced by experts from the UK who have worked with children, adolescents and families living with HIV for almost two decades. This resource aims to: Share knowledge and learning from practice developments in the UK that can be useful in a global context Ensure practitioners have a broad understanding of the psychological and social impacts of HIV on childhood and adolescence Promote the development of support that responds to the holistic needs of the child and adolescent Promote professional responses to reduce the impact of HIV stigma on children and adolescents. The handbook promotes multi-disciplinary working as the best approach to addressing the physical, psychological and social impacts of HIV. A robust partnership between health and social care services ensures a collaborative approach, where a flow of communication between practitioners exists and services are working together to meet the needs of the child, adolescent or family. It also acknowledges throughout that HIV disproportionately affects more vulnerable social groups and that this should be reflected in the practice that is developed. 10 Adolescents Living with HIV:Developing and Strengthening Care and Support Services Adolescents and HIV There are approximately 1.2 billion adolescents in the world, over 80% of whom live in the developing world and an estimated 2.1 million adolescents were living with HIV in 2012 (UNAIDS, 2013). [1] In 2014, the WHO produced Health for the worlds adolescents: A second chance in the second decade [2] which stated that over the last decade, HIV had become one of the biggest killers of the worlds adolescents, second only to road traffic accidents. As global HIV rates decline and the prevention of mother-to-child transmission is being heralded as a global triumph, these findings clearly showed that ALHIV had been overlooked. Adolescence is the transition from childhood to adulthood and a time when the child moves from dependence towards greater independence. At this time children begin to gain a sense of autonomy and a desire to establish their individual identity. Friendships and the peer group, and fitting in with peers, can become increasingly important. Adolescence is known as a time of risk taking and experimentation. It is typical for an HIV diagnosis to be surrounded with secrecy for many groups of people who become infected. For children and adolescents who have grown up with HIV, HIV is closely linked to their sense of who they are, as it has always been a part of them. As such, secrecy and HIV can become interlinked and for many C&ALHIV, this means they keep part of themselves a secret. HIV remains highly stigmatised and for many HIV positive people there is frequently a fear of other people finding out. This can build a negative experience of having HIV, as it becomes viewed as shameful, emphasising difference. These negative associations can be internalised, and for the adolescent who is struggling UNICEF/NYHQ/2006-1329/C. Versiani 11 Adolescents Living with HIV:Developing and Strengthening Care and Support Services to work out who they are, the negative social responses to HIV can lead to a profound experience of self-stigma. This can reinforce feelings of difference, isolation (particularly from peers) and being of less worth than others. Poor adherence and engagement in clinical care during adolescence is normal for all health conditions. The common perception of HIV being associated with an imminent death and limiting opportunities can lead to ALHIV becoming fatalistic and so their risk taking behaviour may be seen as more extreme than their HIV negative peers. ALHIV often experience low self-esteem and struggle to see a future for themselves. But adolescence is also a time of opportunity and creativity and it is important to remember that adolescence is a transition period that may be turbulent, but it will end. The UN Convention on the Rights of the Child (UNCRC) The UNCRC is referred to throughout this resource. It was produced in 1989 and to date has been ratified by 192 countries (although some countries have placed reservations on some articles). The UNCRC is the basis for child-centred and child rights approaches. This Convention sets out the basic rights of children under 18 years without exception or discrimination of any kind, stipulating that the best interests of the child must be the primary consideration in all matters affecting children (Article 3); that childrens survival and development must be ensured (Article 6); and that children have the right to participate in decisions that affect them (Article 12). Within the context of children with health conditions, the UNCRC offers certain articles that are particularly pertinent for C&ALHIV: Every child should have access to information and material from a diversity of national and international sources, especially those aimed at the promotion of his or her social, spiritual, and moral well being and physical and mental health (Article 17) States parties recognise the rights of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States parties shall strive to ensure that no child is deprived of his or her right of access to such healthcare services (Article 24). 12 Adolescents Living with HIV:Developing and Strengthening Care and Support Services WHO guidelines for C&ALHIV This handbook has been influenced by practice experience and research and is closely linked with some key WHO publications. WHO (2011) HIV disclosure counselling for children up to 12 years. This guideline presents research which concludes that childrens health and well-being is supported when they have access to open conversations about their health and where HIV is named to them. The guidelines recommendations state that, children of school age should be told their HIV positive status: younger children should be told incrementally to accommodate their cognitive skills and emotional maturity, in preparation for full disclosure [3]. This handbook upholds this recommendation, promoting C&ALHIV having full knowledge about their HIV status, which then enables work to take place to support them living well and challenges wider stigma towards HIV. WHO (2013) HIV and Adolescents; Guidance for HIV testing and counselling and care for adolescents living with HIV. This guideline considers operational approaches and different options of response to the needs of adolescents with HIV. It provides a range of practice examples which illustrate different responses to the needs of adolescents with HIV, and offers practice guidance. This handbook sets out to provide support in meeting the key recommendations from this WHO (2013) guideline, that: Adolescents should be counselled about the potential benefits and risks of disclosure of their HIV status to others and empowered and supported to determine if, when, how and to whom to disclose Community-based approaches can improve treatment adherence and retention in care of adolescents living with HIV Training of health-care workers can contribute to treatment adherence and improvement in retention in care of adolescents living with HIV [4]. Section One has been written by Dr Caroline Foster and offers a medical perspective, setting out the health needs of ALHIV. Section Two explores in detail different psychosocial impacts on C&ALHIV, to support an in-depth understanding of the lives of these children. Section Three looks specifically at those adolescents who acquire HIV behaviourally. Section Four sets out child-centred HIV specific approaches to developing practice and politics. Finally, Section Four offers examples of peer support group work from the UK. The appendices include numerous examples of activities that have been run with C&ALHIV, to explore HIV specific issues in peer groups and one-to-one sessions with workers. 13 Adolescents Living with HIV:Developing and Strengthening Care and Support Services SECTION ONE: CLINICAL ISSUES FOR ALHIVDr Caroline Foster Consultant in Adolescent Infectious Diseases/HIV Watch video: The impact of psychosocial needs on health provision - http://vimeo.com/112460123 (password: chiva) In regions of the world where ART is available, perinatally acquired HIV-1 infection is now a chronic disease of childhood [5]. High uptake of antenatal testing, reduced mother-to-child transmission rates from diagnosed women, improved survival following ART and later age at presentation among those born abroad [6] mean that the average age of perinatally infected children in many European cohorts is now over 13 years. Increasing numbers of ALHIV are therefore transitioning from paediatric to adult services and join the large numbers of ALHIV infected through sexual transmission [7]. This means that children are surviving into adulthood, yet the process of growing up with HIV can present clinical and psychological complications, not all of which are directly HIV related. Some key clinical issues faced by this group are outlined below. 1.1 The brain and neurocognitive function Whilst the importance of brain growth in infancy is well established, there is increasing recognition of the enormous changes that occur in the adolescent brain. At 11-12 years, brain function slows in preparation for increased synaptic proliferation (frontal lobe) then pruning and strengthening of neural pathways that continues into our mid-twenties. During adolescence, the thalamic drive UNICEF 2014/S. Noorani 14 Adolescents Living with HIV:Developing and Strengthening Care and Support Services for reward may be mismatched with later development of executive functioning reasoning and may explain why risk taking behaviour is much more common in adolescents. Whilst ART has had a remarkable impact on long-term survival for children born with HIV, the long-term effects of living with HIV and prolonged exposure to antiretroviral therapy throughout post-natal growth and development are becoming apparent. Data is now emerging regarding neurocognitive development, mental health and cardiovascular and bone toxicity, the longer-term outcomes of which remain uncertain. Perinatally acquired HIV occurs in the context of an immature brain with human brain development typically continuing into the third decade of a persons life. Without antiretroviral therapy, around 10% of infected infants present with progressive severe HIV encephalopathy (damage to the brain), which although arrested by ART, leaves residual cognitive and motor deficits with significant impact on independent mobility and daily living. Increased rates of expressive language delay and behavioural difficulties are reported in preschool children and more subtle educational difficulties become more apparent in secondary school aged children. Whilst mental health issues are more common in adolescence when compared to earlier childhood in the general population, increased rates of psychological disorders and psychiatric diagnoses, most frequently anxiety and depressive disorders, are reported in ALHIV, impacting on quality of life and on adherence to ART [8]. 1.2 Adherence Adherence to antiretroviral therapy appears to be poorer during adolescence for all ALHIV, although a similar pattern is seen in other chronic diseases of childhood. ALHIV often face multiple barriers to adherence including structural barriers in fitting medication into complex patterns of daily life, low expectancy for outcome of antiretroviral therapy and mental health/substance abuse. The impact of HIV as a family disease means that some adolescents have suffered bereavement, losing parents and other family members to HIV, further impacting on health beliefs and adult support networks around adherence. Early patterns of adherence on initiating ART predict the long-term adherence of HIV positive children, which means that time spent by a multidisciplinary team in preparation and education prior to initiation of therapy, and switching regimens, including the use of peer mentors, counsellors and NGO support are extremely important. Adherence messages need to be frequently repeated as medication fatigue occurs and particular attention given during the period of transition from paediatric to adult services, a time often associated with poorer attendance and adherence to medication. 15 Adolescents Living with HIV:Developing and Strengthening Care and Support Services Despite recent advances in co-formulations, smaller tablet sizes and multidisciplinary approaches to adherence, a small proportion of adolescents continue to either adhere very poorly or decline antiretroviral therapy despite severe immune suppression with its risk of opportunistic infection and death. Keeping this group engaged as they grow towards adulthood is extremely important, as those who choose not to, or are unable to take treatment, require ongoing support and education, including access to sexual health services to prevent onwards transmission to sexual partners and their offspring. This area is expanded further in Section Two: Managing HIV during adolescence. 1.3 Relationships and sexual health education The earlier discussions begin, relating to sex and relationships, the easier this is for the child, practitioner and parent/carer. Begin with an explanation of the physical and emotional changes that occur in boys and girls during puberty, emphasising that these are normal changes. In many countries sexual health education is part of the school curriculum, often occurring around the age of 12 years. However, the quality and retention of such information is extremely variable and ALHIV need specific information that is relevant for their unique situation. Encouraging the younger adolescent to have a small part of the consultation alone with the doctor/nurse supports these discussions. When they are familiar with this pattern of care, it allows opportunity for discussion, education and questions that adolescents may not wish to ask in front of their parent/carers, either because of embarrassment or because they worry about asking difficult questions that may upset their parent/carers. UNICEF/NYHQ2008-0572/A. Dean 16 Adolescents Living with HIV:Developing and Strengthening Care and Support Services Adolescents need simple, basic, clear, age-appropriate facts, explained in language they understand, given in small volumes and repeated frequently. Information should be generic; try to avoid making assumptions based on whether you think a young person is or is not sexually active we often know very little about their lives. Do not presume relationships are heterosexual; up to 10% of young people experience same sex relationships at some time and using the word partners until a young person has clarified their current sexual orientation avoids confusion. Consistent condom use should always be encouraged, with additional contraceptive methods discussed with adolescents. Recent research has shown that the risk of sexual transmission of HIV is substantially reduced where the HIV positive person has an undetectable viral load [9]. Typically suppressive ART reduces HIV viral loads in semen and cervico-vaginal fluid as well as plasma. However, occasional individuals have been shown to have detectable levels of HIV in genital secretions despite virological suppression in plasma, because of compartmentalisation of HIV within the genital tract. For this reason, and because a viral load reflects only one time point and other Sexually Transmitted Infections could be present, health professionals continue to recommend condom use with ALHIV. 1.4 Onward disclosure of HIV Whilst much attention has been paid to the process of naming HIV to a CLHIV, processes of supporting onward disclosure to family, friends and sexual partners have received less attention. However, as the perinatal cohort ages and much larger numbers of children enter adolescence, there is a need for UNICEF NYHQ2006-1478/G. Pirozzi 17 Adolescents Living with HIV:Developing and Strengthening Care and Support Services similarly robust processes to support them through onward disclosure. Many ALHIV have not disclosed their status to anyone and separate their life into compartments: their HIV life and their daily life. There is some evidence that self- disclosure may improve psychological wellbeing for some adolescents, which subsequently enhances their physical health, but there are also examples where outcomes have been less positive. Some adolescents want to disclose their status to close friends, relatives and to sexual partners. It may be helpful to talk through this process: the advantages (becoming closer, sharing, not living a double life), but also the potential disadvantages (rejection, anger, and wider disclosure of their status and possibly other family members). This is expanded further in Section Two: Managing HIV during adolescence. In some countries, transmitting HIV to your partner, even unintentionally, is a criminal offence and people have been prosecuted and received lengthy jail terms. Professionals need to be aware of the law in their own country so they can give sensitive, accurate guidance to ALHIV. It is important that these discussions empower the ALHIV with facts rather than fear. Talk through the detail simply and ask them to reflect back what they understand. If an ALHIV is going to travel, they will need to consider the legal position regarding onward transmission of HIV in the countries they visit. UNICEF/2014/S. Noorani 18 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 1.5 Transition to adult care Transition has been defined as: the planned purposeful process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems. Increasing numbers of perinatally infected ALHIV are entering adult care and the age at which this occurs varies markedly across the globe, from 12 years in parts of sub-Saharan Africa to 24 years in regions such as the US where there is dedicated adolescent/young adult services. With other chronic diseases, transition programmes have been shown to improve attendance, disease control, self-management and patient and carer satisfaction. Conversely, direct transfer to adult services has been associated with poorer attendance and adherence, resulting in increased disease-related mortality and morbidity. Thought and planning must go into this process to ensure the best outcomes for the adolescent and to ensure they remain engaged in care. See Appendix Two: Further Reading for resources relating to this. Conclusion Caring for ALHIV can be complex. HIV or the social situation the adolescent lives in can present difficult psychosocial issues that can impact on their engagement with health and how well they are able to self-care. There are worldwide examples of excellent support that provides a safe place for ALHIV who know their HIV diagnosis, to meet others and to share concerns. As the ALHIV often presents multiple non-health issues, multi-disciplinary teamwork is essential in providing a coherent package of care. Adolescence is a time of enormous change, much of it exciting although some challenges have to be negotiated. A chronic disease adds to the complexity of this period of life, and one that is stigmatising and sexually transmissible even more so. However, the success of ART in the last 15 years means that increasing numbers of children born with HIV have an optimistic long term future and require careful, coordinated, adolescent-centred multidisciplinary support to fulfil their potential as adults within society. Watch video: Developing youth-friendly HIV services - http://vimeo.com/112460122 (password: chiva) 19 Adolescents Living with HIV:Developing and Strengthening Care and Support Services SECTION TWO: THE PSYCHOSOCIAL NEEDS OF C&ALHIVThis section explores specific issues that HIV can present for children, adolescents and families. It focuses on the psychosocial impacts and support needs of C&ALHIV, and does not include access to health care and medication, which may be an issue in different contexts. For many C&ALHIV and their families, HIV is one of a multitude of issues they face, and at times the other issues - such as having sufficient food, housing, substance misuse, mental health problems - may be more critical. Wider social issues are not included in this section, but need to be acknowledged, and where possible addressed. A holistic approach should always be taken when supporting C&ALHIV, and these wider issues taken into account, as they will impact on all aspects of the childs life including engagement, adherence and health outcomes. Group and one-to-one activities that can be used to address some of these issues can be found in Appendix One. This section covers the following areas: 2.1 Growing up with HIV Talking openly about HIV Children fully understanding HIV Parental bereavement Children growing up without their biological parents. UNICEF NYHQ2006-1327/C. Versiani 20 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 2.2 Managing HIV during adolescence Isolation Stigma and self-stigma Taking medicine Sex and sexuality Talking to others about HIV Having no home. 2.3 HIV and the family context How HIV was acquired The family Caring responsibilities for parents and/or siblings Drug use in the family. 2.1 Growing up with HIV Talking openly about HIV This area is covered in some detail in Section Three, but it is important to examine the role of professionals in addressing this issue. At the start of the HIV epidemic, when children were not expected to survive into childhood, not telling them their diagnosis was seen to protect them. The advent of ART and HIV becoming a manageable chronic health condition means the prognosis for children born with HIV is hugely improved, with the expectation that with access to ART, children can live long into adulthood. There have also been developments in understanding childrens rights and having this approach embedded in professional responses to children in settings such as health and education. This has generally lead to child-centred approaches to caring for children with health conditions, involving them in decisions about their own health care, taking their views into account and seeing them as competent in doing this. Children who are given clear, simple information about their health are seen to have less fears, increased understanding and improved outcomes. With respect to the above, HIV is far behind other health conditions. It is not uncommon for C&ALHIV not to be told 21 Adolescents Living with HIV:Developing and Strengthening Care and Support Services HIV is the virus they live with, or that they are only given partial information. When HIV is eventually disclosed to them, it can remain an area of some anxiety and concern. It is critical to consider how children are engaged in conversations about their HIV as this will have a significant impact on how they understand and accept their diagnosis. Professionals have an important role to play in addressing the stigma that surrounds HIV through the active encouragement of, and engagement in, open conversations about HIV. Children fully understanding HIV Having a clear and accurate understanding of HIV is essential to empowering C&ALHIV to live well and develop a good relationship with their medical condition. This needs to include a clear understanding of HIV as a virus, how it replicates and how it compromises their immune system. This knowledge will also mean they understand how their medication works and how to keep themselves well. Equipping C&ALHIV with this knowledge will empower them, giving them control and responsibility over their own health. Although HIV may be explained to C&ALHIV in a clinical setting, it is important that there are ongoing opportunities for conversations in other settings. Exploring the information in different ways offers multiple opportunities to ask questions and express any confusion or uncertainty. Clinics can feel like formal spaces for C&ALHIV and some may find it more difficult to ask questions in this setting. Experience of work with this group has shown that C&ALHIV respond well to receiving this information in youth- UNICEF NYHQ2004-0707/G. Pirozzi 22 Adolescents Living with HIV:Developing and Strengthening Care and Support Services friendly, engaging ways. Repeating information is important as often a child will take away the part of the information that is relevant to them at that time, so revisiting information regularly in different ways will provoke further discussion and debate. Active and participatory approaches to learning (as opposed to presentations of information) are also known to be particularly effective with children. Peer support sessions are good places where C&ALHIV can safely explore issues and ask questions. Never presume knowledge and understanding, and always get the child or adolescent to reflect back what you have been talking about to ensure they have properly understood. Parental bereavement One of the most significant things that can happen to a child is the death of a parent during childhood. This loss has a serious impact on any child, but in relation to HIV, it presents additional complexities. If the parent has died from AIDS related illnesses, the C&ALHIV could believe they will experience the same outcome. If the parent has died before the child was told their HIV status, when HIV is finally named they will be learning the truth about their parents death and again potentially relate this to what they perceive to be their imminent death. This link between HIV and death can bring a sense of fear and anxiety, compounding feelings around being lied to and possibly having to keep this family secret from siblings and other family members. When supporting C&ALHIV, it is important to carry out holistic needs assessments (see Appendix Five). This will enable bereavement to be highlighted and will assist an understanding of the impact on the child at that time and in the future. Open and honest conversations can help, offering the space to talk and ask questions as and when the child needs to. Group work can support the ALHIV to find the language to express themselves and be able to say how the death of their parent has affected them. It also offers the opportunity to share these experiences with others who have had a parent die, acknowledging that they are not alone in this experience. Children growing up without biological parents It is not uncommon for C&ALHIV to grow up in environments away from their biological parents, such as institutions, foster homes, child-headed households or living with extended family members. This can be due to the bereavement of parents; abandonment; mental health or drug use making the parent feel unable to care for the child; abuse meaning the home is not safe; or the issue of poverty. All children become additionally vulnerable due to the loss of parental care. It is understood that a critical feature of a childs social and emotional development is the opportunity to form attachments with a significant caregiver who is warm, sensitive and responsive. There is much psychological research on the impact of severed or absent relationships of attachment for children (see Appendix Two: Further Reading). 23 Adolescents Living with HIV:Developing and Strengthening Care and Support Services An HIV diagnosis in childhood can have a negative impact on a childs sense of self-esteem and self-worth. It can challenge a childs sense of hope about their future, their life, and relationship opportunities. Work with C&ALHIV who are growing up away from their biological parents, and particularly those who are living in institutions for whom a significant attachment relationship is more problematic due to the group care environment, will require special attention. They may face the emotional vulnerability and psychological impact of growing up without a secure attachment relationship with a parent, and the impact of a stigmatised illness which they may have limited understanding of. It is important to understand the difficulties they could face in forming trusting and secure relationships with those caring for them, and acknowledge this in working practice. Approaches to one-to-one support and group work should consider activities to build self-esteem, help C&ALHIV to feel empowered and create a sense of hope for the future. Consideration also needs to be given to how to integrate C&ALHIV with their HIV positive peers who do live with their biological parents and consider ways to challenge any negative attitudes within the peer group (if this should occur), stressing the profound shared experience of growing up with HIV. UNICEF/2014/S. Noorani 25 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 2.2 Managing HIV during adolescence Isolation Many ALHIV describe the impact of HIV making them feeling isolated and different. Even in high prevalence settings, the stigma that surrounds HIV and the lack of people living openly means that ALHIV can feel like they are the only one. This sense of isolation and feeling alone in managing HIV can impact profoundly on psychological and emotional well-being. This is why it is so important to have open conversations about HIV with CLHIV at a young age normalising HIV before societal views can influence the child - and to continue these conversations and link them with their HIV positive peers as soon as possible. In low prevalence contexts, some C&ALHIV will be geographically isolated, which can present challenges to accessing their HIV positive peers. Direct outreach work and using residential interventions has been shown to be successful in overcoming this (see Section Five: Residential Interventions). Linking adolescents through online communication and social media is an option, but face-to-face contact is by far the most successful model. There may be financial barriers such as travel or accommodation costs to overcome and preliminary work may need to be undertaken with parent/carers or children if there is initial resistance or fear, but the impact of peer contact on ALHIV can be life changing. The authors of this handbook have worked with many geographically isolated ALHIV and their feedback following contact with their peers demonstrates immense relief in feeling that they are not alone, building emotional resilience and reducing self-stigma. Stigma and self-stigmaWatch video: Self-stigma - http://vimeo.com/112427513 (password: chiva) Stigma devalues people and generates shame. It blames and punishes certain people or groups to detract from the fact that everyone is at risk. Stigma focuses on existing prejudices and further marginalises people. The stigma attached to HIV comes from it being associated with sex, disease and death, and with illegal or culturally taboos practices. The real and perceived stigma of having HIV can lead to feelings of isolation and difference and experiences of discrimination and abuse. Stigma is also harmful to individuals because it can lead to feelings of guilt or shame. In this way, stigma can become internalised and lead to what is referred to as self-stigma, where the individual has negative beliefs about HIV and therefore negative beliefs about themselves. Self-stigma can result in denial of HIV, non-adherence, and refusal to talk about HIV. Research carried out into self-stigma states: UNICEF/2014/S. Noorani UNICEF NYHQ2004-1159/R. LeMoyne 27 Adolescents Living with HIV:Developing and Strengthening Care and Support Services It leads to fear of disclosure, which leads to social isolation, a life of no sex or anonymous sex that avoids disclosure, negative body image, feelings of hopelessness [10]. Many factors can influence the development of self-stigma: the views of the community a person lives in; how and when they were told they have HIV; and their experiences of HIV (such as abandonment or bereavement). For practitioners to understand the self-stigma of ALHIV it is important to understand the holistic experiences of the child. Working to reduce self-stigma is ultimately going to require a person changing their self-beliefs. Activities and discussion that support ALHIV to explore their self-perception, future aspirations and how they define their identity in relation to HIV, will start to work towards this change. Professionals should take a questioning approach to those beliefs that are self-stigmatising, in an effort to challenge and change them. Taking medicinesWatch video: Adherence - http://vimeo.com/112425742 (password: chiva) The development and advancement of ART means that HIV is now defined as a chronic manageable health condition. However, ART must be taken regularly and if doses are missed, the virus can mutate and the medicines no longer work. Although there is a number of different ART available (and this will vary in different settings) there are a limited number of combinations and poor adherence can lead to multi-drug resistance, morbidity and mortality. Adherence can be a complex psychological issue and solutions can be challenging. Ensuring that C&ALHIV have a good understanding about HIV, how medications help to control it and a proper understanding of what side- UNICEF NYHQ2004-1159/R. LeMoyne UNICEF 2014/S. Noorani 28 Adolescents Living with HIV:Developing and Strengthening Care and Support Services effects are and how they might manifest on different regimes, will support adherence. For C&ALHIV, adherence is a family/home issue and where possible, adherence support should be given to the family when the child is young, developing good models of adherence from an early age. As Dr Caroline Foster sets out in Section One, poor adherence is not unique to HIV and adherence patterns are developed in childhood. To that end, it is important to work with a family around adherence as soon as possible in an attempt to set up good models when a child is young. In its simplest form, adherence support can be divided into two necessary approaches: Approach one: Practical support C&ALHIV and their parent/carers may need practical tools to support them in remembering to take their medicine. This can be simple charts, pillboxes, alarms, mobile phone apps, etc. These techniques help those who struggle to establish daily routines with medication. Approach two: Psychological and emotional support The more complex area involves ALHIV who still feel unable to take medicine despite knowing all the facts about how important this is. This is not uncommon and it is important to understand how and why this situation occurs, as well as seeking to develop ways to work with the adolescent to explore how they can manage this. There are multiple reasons why ALHIV do not take their medication, including: Feeling they have some control That the medication is a daily reminder that they have HIV They feel well and the side effects make them feel unwell They feel that they do not have a future, and see no point in taking medicine Wanting to feel normal and be the same as their HIV negative peers. HIV is highly stigmatised and understanding self-stigma is significant to an understanding of poor adherence. Reflecting on ALHIVs early childhood experiences of HIV, attitudes to medication in their home and their experiences in healthcare will support practitioners understanding and ALHIV to see these links. It may be that there are other significant events or experiences not connected with HIV that impact on adherence, such as experiences of abuse, abandonment, parental drug-use, adolescents using drugs, caring responsibilities, issues at school and within friendship circles. 29 Adolescents Living with HIV:Developing and Strengthening Care and Support Services One-to-one and group work will offer the opportunity to explore these wider experiences. It is important to approach the adolescent holistically, to show an interest in them as a person and not simply in their HIV. Studies in the UK have shown that Motivational Interviewing has had some success in addressing adolescents with extremely poor adherence. [11] If an ALHIV is not taking medication and no intervention at that time seems to be working, focus should be on positive risk management, which means accepting the ALHIV is not taking their medication and supporting them to prevent onward transmission through safer sex or injecting practices during this time. Above all else, it is important that the ALHIV is not judged for their decisions relating to medication, that their choices are accepted and they are kept engaged within healthcare. Appendix One

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