‘I Didn’t Know What to Expect’: Describing Parents’ Expectations in Children’s Rehabilitation Services

Abstract

Aims: The aim of this paper is to provide a holistic description of the nature, formation and impact of parents’ therapy related expectations.

Methods: This qualitative descriptive study drew from initial and follow up interviews with 20 parents of children ≤ 6 years who had a developmental disability or delay and used therapy services at a children’s treatment center in Ontario, Canada. Conventional content analysis was used to inductively generate themes and investigator triangulation was completed.

Results: Parent’s child related expectations focused on whether the child would receive a diagnosis and what they might achieve. Parents held expectations about the availability of service and how it would be offered. Parents’ expectations of service providers included their knowledge, skills, relationships and communication with the children and parents. Parents held expectations of themselves related to attendance and roles in therapy sessions and home practice. These expectations are described according to how they are shaped and changed them over time. The impact of matched/mismatched expectations is explored.

Conclusion: Service providers can improve family-centred care and collaboration with parents by explicitly discussing parents’ expectations when beginning, and throughout, therapy. Parent satisfaction and therapy engagement may improve if parents and service providers negotiate and agree upon expectations.

Keywords:

• Collaboration
• engagement
• expectations
• family-centred care
• pediatric rehabilitation
• service delivery

Acknowledgements

We are grateful to the families who shared their time and experiences with us. We appreciate the contributions made by Peter Rosenbaum, Susan Jack and Cheryl Missiuna to the study that provided this data set.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Michelle Phenix was supported by a Bloorview Research Institute-CanChild Postdoctoral Fellowship. Gillian King holds the Canada Research Chair in Optimal Care for Children with Disabilities, funded by the Canadian Institutes of Health Research. This chair is supported by matching funds from the Kimel Family Opportunities Fund through the Holland Bloorview Kids Rehabilitation Hospital Foundation.