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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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