Principle 8: Families Need To Be Informed About Their Child Or Young Person's Healthcare

Introduction

The following is one of a group of principles which recognise the particular needs of tamariki (children) and rangatahi (young people) receiving health and disability support services. The principles describe what should be provided when your child or young person receives those services.

The principles are based on expert opinion and a considerable body of literature in Aotearoa 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

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

Principle: Whānau (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:

• 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 whānau must work together to balance professional recommendations with the priorities of whānau so that healthcare plans truly meet the needs and goals of the whānau.

You and your whānau 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 whānau. Whānau must be able to have their own personal time and time to deal with other responsibilities.

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 or young person's treatment
• differences between the wishes of a child or young person and the wishes of their parents 

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.

Differences between wishes of a child or young person and their parents

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 healthcare 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 rangathi to question and want to become more involved in decisions around their health and its management.

Parents are generally the best advocates for their tamariki. Even with rangatahi, it is advisable for parents and carers to be a part of the decision making. Staff need to work with each whānau individually and provide the information they need to provide the best support possible for their child.

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 way 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
• takes into account 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 yourself or other members of your whānau.