“What their expectations could be”: a narrative study of mothers and service providers in paediatric rehabilitation

Abstract

Purpose

To better understand and visualise how and why mothers’ and service providers’ expectations for therapy can change over time spanning their journeys and careers in the paediatric rehabilitation system.

Methods

Narrative analysis was used to construct two parallel collective stories that illustrate and explain phases and turning points of developing expectations. Five mothers and nine service providers participated in interviews discussing their expectations when new and more experienced with therapy.

Results

Each collective story had five chapters illustrating how expectations became more relational, controllable, and informed. For mothers, the chapters were: (1) expecting therapy to be a saviour; (2) being turned away and alone; (3) expecting to advocate from necessity; (4) finding new solutions in the environment; and (5) expecting to combine mother and service provider expertise. For service providers, the chapters were: (1) expecting to rescue and fix; (2) searching for an alternative sense of professional worth; (3) expecting to lose control; (4) being the authentic self before expected self; and (5) expecting the unexpected.

Conclusions

Mothers’ experiences with feeling alone and learning ways to modify their child’s environments, and service providers’ experiences with feeling inadequate and embracing authenticity, were essential to the developmental trajectories of expectations.

Implications for Rehabilitation:

• Mapping expectations for therapy on a line graph shaped as a wave shows promise in reflecting the developmental trajectory of mothers’ and service providers’ expectations over time.

• Service providers should become aware of how to work with three distinct groups of mothers as determined by the phase of expectations for therapy they are currently experiencing (i.e., hyped, disillusioned, or enlightened).

• Therapy programmes can optimise expectations for therapy through redesigns that emphasise elements of networking, self-compassion, ethics, and authenticity.

Keywords:

• Narrative
• expectations
• turning points
• Gartner Hype Cycle
• paediatric rehabilitation
• therapy
• family-centred care

Acknowledgements

The research team thanks participating families and service providers for sharing their stories. This research is dedicated to Jake Bloomfield, Patty Rigby, Virginia Barcarse, and Oliver Smart.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This research was supported by a Joseph-Armand Bombardier Canada Graduate Scholarship and a Kimel Family Graduate Student Scholarship in Paediatric Rehabilitation. Gillian King holds the Canada Research Chair (Tier 1) 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.