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 a listing of 14 principles guiding provision of health and disability services [1]
Principle: Families need to be fully informed about their child's or young person's condition so that they can participate in all aspects of their child or young person’s care and support.
You can expect that the healthcare system will enable you:
Professionals and families must work together to balance professional recommendations with the priorities of families so that healthcare plans truly meet the needs and goals of the family.
You and your family must be informed about:
Without this communication, plans may be developed that place unrealistic expectations and demands on you and/or your family/whānau. Family and whānau must be able to have their own personal time and time to deal with other responsibilities.
Sometimes a conflict arises between:
This sometimes involves:
In these situations, it is important to talk openly with the staff about your feelings and concerns. You can ask for:
These are difficult situations for everybody and there should be a process for working through these issues so that everyone respects your child or young person’s best interests and puts these first.
These issues need to be worked through with great sensitivity to ensure that the best possible outcome can be achieved. Sometimes differences occur because:
It is developmentally appropriate for young people to question and want to become more involved in decisions around their health and its management.
Parents are generally the best advocates for their children. Even with young people, it is advisable for parents and carers to be a part of the decision making. Staff need to work with each family individually and provide the information they need to provide the best support possible for their child.
As parents or carers, you will probably know more about your child or young person's health than anyone else. You have the main responsibility for and influence on your child. You can expect health professionals to recognise this and respect:
You can expect a plan to be developed with you which:
You can always ask professionals to take over some responsibility at times when you feel too tired or anxious to continue as the main caregiver or when you need to give time to other family members or to yourself.
See the references listed at the bottom of the page Introduction to principles guiding provision of health and disability services [2].
This page last reviewed 14 October 2021.
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Links
[1] https://www.kidshealth.org.nz/introduction-principles-guiding-provision-health-disability-services
[2] https://www.kidshealth.org.nz/introduction-principles-guiding-provision-health-and-disability-services
[3] https://www.kidshealth.org.nz/contact?from=http%3A%2F%2Fwww.kidshealth.org.nz%2Fprint%2F207%3Flanguage%3Dzh-hans