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Principle 8: Information, participation & involvement in care & consent (family / whānau)


Disclaimer: This fact sheet is for educational use only. Please consult your doctor or other health professional to make sure this information is right for your child.

Introduction

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 in Principles: what health and disability services should provide for your child or young person.
 

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You need to be fully informed about your child or young person's health care

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 health care system will enable you:
  • to be your child or young person’s primary caregiver
  • to have the opportunity to act as an advocate for your child or young person
  • to be involved in the decision-making processes
Professionals and families must work together to balance professional recommendations with the priorities of families so that health care plans truly meet the needs and goals of the family.
 
You and your familiy must be informed about:
  • risks which may be associated with your child or young person’s care
  • the fastest access to services
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.
 

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Rights of children, young people and parents

Sometimes a conflict arises between:
  • respect for the wishes of parents and
  • the rights of the child or young person
This sometimes involves:
  • differences between parents and health professionals regarding a child's or young person's treatment
  • differences between children's or young people's wishes and their parents' wishes

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Differences between parents and health professionals

In these situations it is important to talk openly with the staff about your feelings and concerns. You can ask for:
  • a second opinion, and
  • an advocate for you
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.
 

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Differences between children's or young people's and parents' wishes

These issues need to be worked through with great sensitivity to ensure that the best possible outcome can be achieved. Sometimes differences occur because:
  • a child or young person already has experience of their health care setting and understands the implications of decisions about treatment
  • some parents want to protect their child or young person from distressing information (such as the likelihood of pain, possible side effects, disability or death) or think that the young person would be unable to cope with this information
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.
 

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Partnership with parents and children

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:
  • your values and skills as parents or carers
  • the ways you do things
You can expect a plan to be developed with you which:
  • defines roles and responsibilities
  • takes into account how much you wish to be involved and how comfortable you are with caring for your child or young person; as children get older they may wish you to have less involvement
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.
 

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Acknowledgements

 

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Endorsement

This fact sheet was endorsed by PSNZ - 20/10/2010

Copyright

Fact sheets are subject to copyright. In the interests of information sharing they may be copied but acknowledgement must be given to PSNZ and Starship Foundation.
© The Paediatric Society of New Zealand and Starship Foundation 2005 - 2012


The Paediatric Society of New Zealand
http://www.paediatrics.org.nz 		Starship Foundation
http://www.starship.org.nz