Therapy Roles in Family-centred Care: Negotiating Expectations between Parents and Service Providers Over Time

The ideal principles of family-centred care models underlying paediatric rehabilitation generate expectations that therapy sessions involve clients choosing their level of involvement, family members being treated with respect, and everyone having their needs considered. However, expectations are often unmet or overlooked in practice. Expectations associated with professional- or system-centred care models persist. Allowing expectations to remain implicit may create assumptions that unnecessarily constrain views about what therapy roles and responsibilities between parents and service providers are ideal. Expectations are future-oriented beliefs about what will and should happen during therapy. This dissertation explored the meaning, development, and change of parents’ and service providers’ expectations for therapy spanning their years of experience in paediatric rehabilitation. I conducted one study to analyze expectations from three perspectives. First, what meanings of expectations for therapy were expressed directly and indirectly? Second, how did power affect the negotiation process to develop expectations for therapy? Third, how and why did expectations for therapy change over time? Five parents and nine service providers took part in qualitative interviews. Data were transformed into a collection of stories using narrative analysis. I worked within the constructivism paradigm. Parents and service providers experienced expectations for therapy as a paradoxical construct with multiple contradictory meanings, including positive/negative, heavy/light, and definite/indefinite. Next, their experiences negotiating expectations for therapy were shaped through a range of in-session processes affecting the level of power differences in partnerships. Finally, their expectations changed after experiencing disillusioning events that challenged them to re-think their personal stories. This research created knowledge and tools that parents and service providers can use to make the process of talking about and adapting expectations for therapy more jointly accessible. Findings revealed how becoming aware of and responding to ‘incongruent’ expectations for therapy are essential to personalizing the ideal principles of family-centred care to individual cases. Additionally, a master narrative of ‘betrayal induced belief changes,’ a sequence of experiences involving parents and service providers replacing initially desired narratives with experienced and informed narratives, can serve as a template of expected experiences readying parents and service providers to develop informed, sustainable, and meaningful expectations for therapy.

Department dc:contributor.department

Rehabilitation Science

Year dc:date.issued

2021

Author dc:creator

• Smart, Eric Robert

Advisor dc:contributor.advisor

• King, Gillian

Handle dc:identifier.uri

http://hdl.handle.net/1807/104988

OAI identifier oai:identifier

oai:utoronto.scholaris.ca:1807/104988