Illuminating their reality: the use of metaphor by parents of children with disabilities to express their experiences of health care

Abstract

Purpose

To explore the nature and meaning of metaphors used by parents of children with disabilities when describing their healthcare experiences.

Method

A systematic procedure was used to identify and analyze metaphors spontaneously mentioned by parents in 13 focus groups held with 65 Canadian parents of children with disabilities. Attention was paid to identifying deep (i.e., meaningful) metaphors rather than common expressions.

Results

A total of 214 deep metaphors were identified and categorized into four target-source groupings. Parents used journey metaphors to describe experiences of uncertainty, conflict and harm metaphors to describe confrontational, harmful, and demeaning experiences of care, games and puzzles to describe the unknowns of care and attempts to resolve these unknowns, and metaphors concerning environmental barriers (i.e., walls and doors) to express feelings of exclusion and difficulties accessing care.

Conclusions

Parents’ metaphors expressed experiences of uncertainty, powerlessness, and attempts to exert agency in healthcare interactions. The metaphorical groupings provide new insights into how and why lack of family-centeredness in service delivery is bewildering, distressing, and disempowering to parents. Implications for service providers include paying attention to what metaphor use reveals about parents’ experiences, and discussing parents’ metaphors with them to create joint understanding, providing a fertile ground for collaboration.

IMPLICATIONS FOR REHABILITATION

• Study findings indicated a clear lack of family-centeredness in gaining access to services, communicating with service providers and being listened to, and in decision-making power.

• Given that many service providers believe they are family-centered, the strong negative connotations of the metaphors used by parents are surprising and worrisome.

• Parents’ use of metaphors not only reflects a lack of family-centered care, but indicates that parents experience unintentional harm in their interactions with service providers.

• Service providers can benefit from knowing the fundamental issues of uncertainty and power that underlie parents’ use of metaphors to communicate vividly the tensions and issues they face.

Keywords:

• Analogies
• effective communication
• family-centered service
• pediatric rehabilitation
• qualitative
• research

Acknowledgements

We extend our sincere appreciation to the parents/caregivers who participated in this research and shared their experiences. We acknowledge the contributions of other team members to the research project on which this study was based, including Rae Martens.

Declaration of interest

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by a project grant (No. 175180) from the Canadian Institutes of Health Research. 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.