A whole new world: a qualitative investigation of parents’ experiences in transitioning their preterm child with cerebral palsy to developmental/rehabilitation services

ABSTRACT

Background: Parents’ experiences transitioning their children from neonatal to developmental/rehabilitation services (DRS) are unknown.

Methods: A qualitative descriptive approach was used, including interviews with 18 parents (13 mothers and 5 fathers) of children born preterm and diagnosed with cerebral palsy (CP), located in a large urban center in Canada. Interview data underwent thematic analysis.

Results: Parents’ experiences with transition to DRS were a whole new world with three key themes: Wanting to know what to expect, feeling supported in their transition, and getting there emotionally and physically. Transition broke an emotional bond with neonatal services while parents were simultaneously entering DRS, experiencing their child’s CP diagnosis, and reliving prior emotional trauma.

Conclusions: The findings reveal a cumulative emotional burden for parents in the first 3 years of life; a known critical period for parenting and early childhood development. Early transition interventions should consider including enhanced supports and services for parents.

Keywords:

• Cerebral palsy
• parents
• pediatrics
• qualitative methods
• rehabilitation
• transition

Acknowledgments

Authors would like to acknowledge the Family Leaders at Holland Bloorview Kids Rehabiliation Hospital who reviewed and made recommendations for improvements to the interview guide, the study participants for sharing their stories with us, and Joan Walker and Tara-Joy Knibbe for their research team support.

Declaration of interest

The authors have no conflicts of interest to declare.

Additional information

Funding

This research was supported by the Bloorview Research Institute Catalyst Grant.