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Related Experiment Video

Updated: Jul 10, 2026

Development and Implementation of a Multi-Disciplinary Technology Enhanced Care Pathway for Youth and Adults with Concussion

Development and Implementation of a Multi-Disciplinary Technology Enhanced Care Pathway for Youth and Adults with Concussion

Published on: January 20, 2019

Parenting children requiring complex care: a journey through time.

H Macdonald¹, P Callery

¹University of New Brunswick, PO Box 4400, Fredericton, NB, Canada, E3A 5A4. heatherm@unb.ca

Child: Care, Health and Development

|November 22, 2007

Summary

Parents caring for children with complex needs often lack breaks, leading to health issues. Their need for respite care changes over time, evolving from infancy through adulthood.

Related Experiment Videos

Last Updated: Jul 10, 2026

Development and Implementation of a Multi-Disciplinary Technology Enhanced Care Pathway for Youth and Adults with Concussion

Development and Implementation of a Multi-Disciplinary Technology Enhanced Care Pathway for Youth and Adults with Concussion

Published on: January 20, 2019

Area of Science:

Pediatric Nursing
Family Caregiving Studies
Health Services Research

Background:

Parents of children with complex care needs provide intensive home care without regular breaks.
This prolonged caregiving leads to significant health and social consequences for parents.
Respite care is a critical, yet often unmet, need for these families.

Purpose of the Study:

To explore the long-term experiences of parents providing complex care to their children.
To understand the evolving needs for respite care throughout the child's life.
To develop a developmental map of caregiving and associated respite needs.

Main Methods:

An ethnographic approach was employed, utilizing in-depth interviews and participant observation.
Eco-maps and document reviews supplemented data collection.
Parents of children with complex care needs, nurses, and social workers were included.

Main Results:

A developmental map illustrating the caregiving trajectory from infancy to young adulthood was created.
The map details the changing nature of care and parents' evolving respite needs over time.
Parents' retrospective accounts formed the basis of this developmental understanding.

Conclusions:

Current research often overlooks the longitudinal impact of caregiving on parents.
Respite care needs are dynamic, shifting as the child matures and life circumstances change.
This study provides a developmental perspective on caregiving and highlights the changing landscape of respite needs for families.