Principle 7: Children and young people need information
Principle 7: Children and young people need information
Children and young people of all ages should have information provided in a manner appropriate to their maturity, understanding and culture, including participation in decisions that affect them, active involvement in their care and giving consent if competent.
The following is one of a group of principles which recognise the particular needs of children and young people receiving health and disability support services. The principles describe what should be provided when your child or young person receives those services. They are based on expert opinion and a considerable body of literature in New Zealand and overseas and they have been developed after wide consultation. See all the principles listed on the page Introduction to principles guiding provision of health and disability services.
Children and young people need information
Principle: Children and young people of all ages should have information provided in a manner appropriate to their maturity, understanding and culture, including participation in decisions that affect them, active involvement in their care and giving consent if competent.
The consent of all children and young people should be sought or, if they are too young, health practitioners should find out the child's or young person's wishes and take these into account.
Young people aged 16 or over have the same rights as adults to consent to treatment. There are situations when a health practitioner finds that a child or young person aged under 16 years has the understanding and maturity to form a balanced judgement about the proposed treatment and then the child or young person can be treated without parental consent. If the child or young person does not have such understanding, parental consent must be secured before treatment is given.
Research shows that even very young children, if they are properly informed, can be involved. The views of children and young people can be recorded on the health records, either by staff or the child or young person, and advocates can be provided for them.
Younger children may not be able to share in all the decisions but will have strong views on how things are done. They can be involved in minor ways, such as deciding in which arm to have an injection. Giving a child choice about such things gives them some feeling of control. In this way, the child can gradually gain confidence to share in more major decisions.
Research involving children and young people is important, but their interests must be safeguarded. Legally valid consent must be obtained from the child or young person, parent or guardian as appropriate for any research project. When parental consent is given, the agreement of school-age children and young people who take part in research should also be requested by researchers. Separate information and consent forms must be available for parents and children/young people.
The Ministry of Health has produced the following detailed guide (aimed at health practitioners) to issues relating to children and young people and consent:
- Consent in child and youth health: Information for practitioners (December 1998)
Information and making decisions
Information helps children and young people who are ill or have a disability to feel more in control and to cope and adjust better with illness or treatment. Without information that they understand and that has been discussed with them, children may imagine that things will be much worse than they really are. They may feel that they are to blame for what is happening to them. For young people, involvement in their care has been shown to increase the likelihood that they will follow their treatment.
Children and young people need information to participate in their healthcare. Nursing and medical staff are required to assess each child or young person's maturity and wishes and provide the level of information appropriate to them. They should:
- assess how much the child or young person is able to understand
- be ready to explain and follow up any cues from the child or young person
- listen carefully to the child or young person and give the information in the detail they want
Children and young people under 16 have the same right to confidentiality as anyone else, though many young people may not be aware of this.
Confidentiality should be explained to all young people. The limits of confidentiality regarding safety concerns should also be explained; this includes situations where the health professional is concerned that the young person is at risk of harming themselves, harming someone else, or someone harming them.
Some young people are reluctant to ask for help from healthcare professionals because they do not want family and friends to know they have a problem. Sometimes they want to protect their own parents.
Young people should frequently be offered the opportunity to talk to staff separately from parents or carers so that they can express their own private concerns and give their own views to health professionals directly. This helps them to develop skills and confidence in relating to professionals and fosters independence, which is vital for young people's healthy development. Providing private time with professionals does not have a negative impact on the parent-child relationship. Sometimes a private conversation with a caring and skilled professional actually helps open up communication between young people and their parents.
The principle of confidentiality means that sometimes what is discussed may not be shared with parents. There are, however, limits to confidentiality and wherever there is a risk of physical, emotional or sexual harm, information will not be kept confidential.
Where young people are concerned about what will be written on their health or disability service notes, or passed on to other people, staff should enable them to have input into what will be recorded.