Create long-term support systems centred on the individual
Principle: Health care and disability support providers of Well Child, chronic care or disability support services for children and young people should ensure that long-term support systems are created which are centred on the individual.
Children with ongoing health and disability support needs require services that are:
Families involved with multiple providers need to be informed about the roles of all providers.
You should have one person who co-ordinates services for your child or young person and ensures that long-term services and support are available.
Wherever transitions are necessary (such as from paediatric services to adult services), the transition should be carefully planned, well in advance. At least one individual provider should stay with the child or young person and their family after the transition, until the new services are well established.
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Family-to-family support
Health care providers need to promote and encourage family-to-family support and networking.
Family-to-family support provides:
- mutual support and friendship
- information gathering and sharing
- ideas for improving the delivery of health care services
People often find that more help comes from strangers with the same problem than those close to them because the latter are also distressed and need support.
Mutual support is very effective because participants learn that other people have similar feelings and that these feelings can be normal in their circumstances. They are encouraged by the observation that they too, in turn, can become helpers rather than clients.
Parent-to-parent support can take many forms, including:
- formal support groups that meet at a regularly scheduled time (see Support Groups A-Z )
- informal networks and support
Parent-to-parent groups do not replace physicians, therapists or other professionals. The development of written resources and programmes containing medical information or educational information should be guided or reviewed by professionals with appropriate expertise. Professionals developing services for families should draw on the special expertise of families.
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Where to go for more information
On this website
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Acknowledgements
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Your notes
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