From choice, a world of possibilities

Young people as patients; Who decides?

Who are we talking about? Children

: 0 - 18 years

Youth : 15 - 25 years

Adolescents: 10 – 19 years

Young people: 10 – 24 years

Source: UN & WHO

Some questions for youSome questions for you Would you let a 14 year old decide what

clothes to wear? Would you let a 14 year old to go out clubbing

till after 12 o’clock in the evening? Would you let a 15 year old go around the

world sailing on her/his own?

Traditional notions of youth and adult

Youth: Not adult/adolescent Becoming Pre-social self Powerless & vulnerable Less responsible Dependent Ignorant Risky behaviours Rebellious Reliant

Adult; Adult/grown up Arrived Identity is fixed Powerful & strong Responsible Independent Knowledgeable Considered behaviour Conformist Autonomous

What makes (young) people vulnerable

External side: Exposure Internal side: Coping Difference between risk and vulnerability Degrees of vulnerability Vulnerability is not static

What makes young people vulnerable as patients

Lack of access to youth friendly services and programmesCannot get youth friendly treatment, do not

receive age appropriate informationAttitudes of service providers

Lack of access to justice Cannot get renounce to violations in care

GenderSocial norms create power imbalances and

affect behaviour

Other challenges and dilemmas Lack of information on all aspects of health

Self stigmatization of young people

Parents, educators, and health providers may feel uncomfortable or unwilling to discuss certain health issues

Mandatory parental consent requirements

Lack of high quality age specific comprehensive services provided by supportive staff

From vulnerability to empowerment and resilience Look at young people from a different

perspective: Youth is not just stage of development : social ,

legal perspective Young people are rights bearers wherever they

are in the developmental spectrum Giving the balance right between autonomy and

protection Support and understand their evolving capacity

Universal and particular elements in the conception of youthUniversal

Age status geographical location

Global youth culture Compulsory schooling

Legal prescriptions based on age,

Adolescent development

Youth as deficient

Particular

Social status, e.g., class, gender, ethnicity, race,

Cultural formation Unequal provision,

opportunities State regulation Diverse life experiences

and cultural norms

Youth having multiple dimensions

Protection versus autonomyProtection versus autonomy

The best interests of the child

Evolving capacities of the young person

Parental involvement

Convention of the rights of the child: Evolving capacityConvention of the rights of the child: Evolving capacity

Article 5: young people’s evolving capacity to exercise their own rights must be taken into consideration by those who provide guidance and direction to young people

Article 12: young people must be able to freely express their views, which should be given weight in accordance with their evolving capacity

Article 14: young people must be afforded freedom of thought, conscience and religion

From vulnerability to empowerment Importance of role of adults but more

ownership to young patients From determination by adults towards more

self determination From obedience and dominance to listening to

young patients and giving them a greater say in their decisions

Conclusions/recommendations Invest in youth-friendly health policies,

programmes and services Engage with young patients as equal

partners by providing opportunities for them to participate in decision-making, policy-making and advocacy

Some ideas we would like you to think about:When you want to involve young patients You need to learn more about them, their live, how

their life is affected by the diseases and how their needs are constantly changing

You need to have a positive view on young patients and avoid stigmatization and discrimination

You need to be able to listen to young patients