Ayesha Kadir MD Gonca Yilmaz MD, PhD CHILD 2015 The role of children and adolescents in health decision-making Ayesha Kadir MD Gonca Yilmaz MD, PhD

Introduction What participation means, from the UNCRC Article 12 and linked articles The ladder of participation Barriers to child participation The benefits of participation What can we do as an health care professional? General discussion and questions

Types Of Rights 54 Articles Three types of rights Protection Provision Participation 21.04.2017

General Principles Underlying The UN Convention Article 2 – all the rights in the Convention apply to all children without discrimination on any grounds Article 3 – in all actions affecting children their best interests must be a primary consideration Article 6 – all children have the right to life and optimal survival and development Article 12 – all children, capable of expressing a view have the right to express that view freely and to have it taken seriously, including in judicial and administrative proceedings affecting the child, in accordance with their age and maturity

Article12 CRC The right to be heard Every child, capable of forming a view, has a right to express their views freely Applies to all matters of concern to them Due weight must be given to their views Age and maturity must inform the weight given to the child’s views

Where should participation take place? In courts In play and recreation At home In hospitals In international forums In conferences In school In local government In local communities In government policy In culture and the arts In other words, at all levels of society and in all settings

Strengthened accountability Child participation Citizenship Strengthened accountability Social justice Enhanced protection Personal development Improved outcomes

Why does participation matter? Contributes to personal development – self esteem, confidence, skills etc Promotes social justice - Recognition of the right to be involved in decisions and actions that impact on their lives is fundamental to dignity and respect for children with disabilities. It represents an acknowledgement of their citizenship, and promotes their social inclusion. Improves outcomes - The active engagement of children with disabilities will contribute positively to development by harnessing their experience of, for example, barriers impeding effective and inclusive learning in schools, or improving access to water and sanitation. Also individual decisions Enhances protection – disproportionate violence. Silencing of children. Empowerment and ending impunity – East Africa research Promotes civic engagement - Participation contributes to a culture of respect in which decision-making is undertaken through negotiation, rather than conflict, and in which human rights are recognised as reciprocal and mutual. Skillls as important for cwd as for all other children Strengthening accountability -The traditional marginalisation and exclusion of people with disabilities, including children, inhibits their capacity to challenge violations of their rights. Building opportunities for children with disabilities to engage in issues of concern to them strengthens their capacity to hold governments and other duty-bearers to account

Article 5 implies that health care providers have both an obligation and an opportunity to: Explore with children (and their caregiver(s)) their treatment options, their level of understanding, their associated opinions and views and their competence to make decisions affecting them (about their treatment and care). Present information to children in a ways they will understand (e.g. language, mode) and that are appropriate to child’s evolving capacities 21.04.2017

Participation and the realisation of rights General principles: non-discrimination, best interests, optimum development Socio-economic rights: adequate standard of living, education, health, play Protection rights: from violence economic exploitation, sexual exploitation Civil rights: to information, freedom of expression, conscience, religion, association Participation Best interests

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Participation in practice

Alderson and Montgomery (1996) define four levels at which children can participate; 1. Being informed 2. Expressing a view 3. Influencing a decision 4. Being the main decider

What do you feel are the barriers to greater participation by children in their own health care? 21.04.2017

Arguments against medical child participation Children lack the competence or experience to participation. Adult’s instincts to protect children from distressing information. İt will infringe upon the rights of parents. Children’s rights is a Western concept being imposed on other countries. 21.04.2017

What are the barriers facing children? Lack of training and skills Attitudes and assumptions Lack of accessible transport Lack of funding Attitudes – there are widespread assumptions that children with disabilities who do not communicate in the same ways as other children are ignorant, disobedient or stupid. This negative perception is a major barrier to effective communication. Assumptions – children with multiple impairments are often wrongly assumed to be unable to communicate. Their communication may be very subtle, such as the flickering of eyelids or other small movements. The key to communicating with children with multiple impairments is to spend time building a method by which communication is achieved, or to start by asking others who know the child to tell you about their preferred method of communication. Cultural expectations – children come from a wide range of cultures. It is therefore important to understand that what might be acceptable in one culture may be offensive in others. Eye contact in particular is important: some children will avert their eyes from authority figures as in some cultures direct eye contact is considered insolent. Lack of knowledge and training – adults working with children with disabilities may lack adequate knowledge and training to provide appropriate support and communication. Often the skills needed are quite simple, such as learning how to use photographs and pictures to aid communication and decision-making. Physical environment – a poorly laid out area without clearly defined boundaries can be confusing to some children with sensory impairments. Lighting and temperature are also essential elements to consider. For example, cold/warm and bright/dark places can affect mood and behaviour. All parts of the environment need to be made accessible to children with mobility impairments. Lack of confidence – some children may not feel confident in communicating and adults may not feel confident in communicating with some children. Training may help to address this, but a willingness to take risks and have a go is also necessary. Lack of time to build a relationship – children with disabilities who are unused to being asked their opinions or being listened to may find it difficult to express themselves unless given adequate time to build up confidence and trust. It also may take time to explore the most effective way of communicating with a particular child. Lack of funding – lack of funding often hinders participation. In particular, there is often inadequate funding to meet the individual requirements of some children, for example, for interpreters and additional support to enable their effective involvement in decision-making. Some children may require a specific piece of equipment in order to communicate. Creative thinking helps as this need not mean expensive software; it could be something as simple as using of symbols and pictures. The impairment – while it is not necessary to have in-depth knowledge of all impairments, it is important to understand if and how the child’s ability to communicate through speech and body language is impaired and therefore what specific methods of communication best suit the child. Language used – where a child with a disability speaks a different language from the national language, recognition needs to be given to the additional care that she or he will need to facilitate communication.   Physical environment Failure to commit time Lack of confidence

Right To Participation Frequently violated in paediatric practice: Children often excluded Opinion/consent not sought Good practice but rare 21.04.2017

At what age do you consider children to be competent to take responsibility for their own health care? Why? 21.04.2017

Very young children taking decisions that affect their health, examples: Three-year-old Maisie was able to warn her mother when she was feeling shaky from low blood sugar. Ruby at four years of age could be trusted not to eat chocolates when her friend did and no adults were present, and by the age of five she was able to test her own blood sugar and decide how much cake she could eat. Ahmet, a 8 year boy with acute lymphoblastic leukemia(ALL) was able to pay attention to his white blood cell count. Jill, at 3 years of age, reminds her mother when it was time for her to take her HIV medicines 21.04.2017

What changes might be necessary in your practice or hospital to move toward a culture of greater respect for children’s participation in their own health care? 21.04.2017

Avoid talking over the child’s head: children get distressed when doctors talk directly to their parents without involving them. 21.04.2017

Give children the opportunity to ask questions and explore their concerns and deal with them honestly and FULLY. 21.04.2017

A 10 year old boy is admitted to the hospital in the middle of the night and prescribed an intravenous infusion. He refuses. 21.04.2017

What would you do as an health professional? A 20 month old boy is about to inhale medicine to expand the bronchi. The first inhalation goes fine, but the next he refuses. What would you do as an health professional? 21.04.2017

Article 16 – the right to privacy and respect for confidentiality

Develop policies on confidentiality. 21.04.2017

What about seeing a child on his- her own? 21.04.2017

Develop policies on consent to treatment. 21.04.2017

Medical consent to treatment Some countries have introduced a fixed age Age threshold Combine system Some countries adopt an approach that gives the parents a gradually decreasing role No age treshhold 21.04.2017

Consultation Plan Waiting room Communication with the child Child -young person Communication with the child Informed consent Provision of information Informing children about therapy Advocacy 21.04.2017

Resources Goldhagen, J., Waterston, T. Child Rights Training Programme – available from ESSOP www.essop.org or: CHILD data set is available at http://www.europa.eu.int/comm/health/ph/programmes/monitor/fp_monitoring_20 00_frep_08_en.pdf . Simonelli F and Guerreiro AIF (eds); Self-evaluation Model and Tool on the Respect of Children’s Rights in Hospital (2009) an d The respect of children’s rights in hospital: an initiative of the International Network on Health Promoting Hospitals and Health Services . Final Report on the implementation process of the Self-evaluation Model and Tool on the respect of children’s rights in hospital. January 2010, both available: http://www.hphnet.org/index.php?option=com_content&view=article&id=1551% 3Ahp-for-children-a-adolescents-in-a-by-hospitals-&catid=20&Itemid=95 (last accessed on 23 November 2011) United Nations Children’s Fund. Convention on the rights of the child. Available at: www.unicef.org/crc 21.04.2017

Cases 1 Fatma is an 8- year old girl of an Egyptian family that lives in Turkey. She is healthy and visited you for a child care visit. Family makes plans for their 8-year old girl to undergo female genital mutilation. 2 A 12 year old girl, Sue, with terminal acute lymphoblastic leukemia(ALL) refuses therapy and wants to go home. 3 A 14-year-old girl, Merry, visits your outpatient clinic. She is anorexic and looks exhausted. Family doesn’t want her hospitalization. When you are talking with her, you learn that she was inseminated by her uncle and became pregnant 4 A 10-year-old boy, Tim, develops enuresis nocturna. You performed all laboratory tests and diagnosed ‘depression’. You sent him with antidepressive drug to home. 21.04.2017

Case 1. Fatma is an 8- year old Egyptian girl, living in Turkey. She is healthy and visited you for a pre-travel health care visit. While her vital signs were taken, the clinic nurse overheard Fatma’s older sister speaking about plans for Fatma to undergo female genital mutilation. Which rights are at stake for the child and parent? What would you do in this situation? 21.04.2017

Case 2. A 12 year old girl, Sue, with terminal acute lymphoblastic leukemia(ALL) refuses therapy and wants to go home. Which rights are at stake for the child and parent? What would you do in this stiuation? Who would you go for guidance? 21.04.2017

Case 3. A 14-year-old girl, Merry, visits your outpatient clinic. She is very thin and tired appearing. And you are concerned about anorexia. You ask to her speak her alone and learn that she has been brought in by her father for medical care because she is pregnant. She tells you that her uncle is father. Which rights are at stake for the child and parent? Which rights would you prioritize? Why? How would you resolve the potential conflict? 21.04.2017

Case 4. A 10-year-old boy, Tim, develops nocturnal enuresis. After full evaluation, you diagnose him with ‘depression’ and prescribe antidepressant medication. Which rights are at stake for the child and parent? Which rights would you prioritize? Why? How would you resolve the potential conflict? 21.04.2017

Thank you! 21.04.2017