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The patient double bind: Seeking outsiders while creating insiders.

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Summary
This summary is machine-generated.

Patient partners on healthcare teams face marginalization, with their contributions accepted only when aligning with staff priorities. True patient-centered care requires teams to adapt rather than expecting patients to conform.

Keywords:
Change teamsDouble-bindLongitudinal qualitative researchPatient partners

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Area of Science:

  • Healthcare Management
  • Patient Engagement
  • Organizational Behavior

Background:

  • Patient participation is crucial for patient-centered healthcare.
  • Patient partners are often tokenized, limiting their impact.
  • Understanding patient contribution dynamics in healthcare teams is essential.

Purpose of the Study:

  • To explore microprocesses affecting patient contributions in multidisciplinary healthcare change teams.
  • To examine how healthcare teams respond to patient contributions.
  • To develop theory on patient and staff limitations in achieving patient-centeredness.

Main Methods:

  • A 23-month longitudinal inductive study.
  • Inclusion of patient partners in multidisciplinary healthcare change teams across three outpatient clinics.
  • Data collection through 142 meetings, observations, interviews, and archival data.

Main Results:

  • Patients faced recurring marginalization, narrowing, and redefining of their roles.
  • Contributions aligning with staff priorities were more readily accepted than those challenging them.
  • Three patient pathways emerged: Empowerment to Exit, Empowerment to Acceptance, and Team Reframing to Patient Adaptation.

Conclusions:

  • Healthcare teams' well-intentioned interactions can limit patient contributions.
  • Achieving patient-centered care requires teams to adapt their mindset and processes.
  • Further research is needed to understand and overcome limitations in patient-centered transformation.