Actions and processes that patients, family members, and physicians associate with patient- and family-centered care

Clarissa Hsu,Jennifer M Sweeney,Robert J Reid,Marlaine Figueroa Gray,Lauren Murray,Dominick L Frosch,Tracy M Mroz,Kelly Ehrlich,Bev Johnson,Wendy Nickel,Marie Abraham

doi:10.1186/s12875-019-0918-7

Abstract

BackgroundPatient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making. However, in order to consistently implement and study PFCC, health care systems and researchers need a solid evidentiary base. Most current definitions and models of PFCC are broad and conceptual, and difficult to translate into measurable behaviors and actions. This paper provides a brief overview of all actions that focus group respondents associated with PFCC in ambulatory (outpatient) care settings and then explores actions associated with the concept of “dignity and respect” in greater detail.MethodsWe conducted nine focus groups with patients, family members, and physicians in three metropolitan regions across the United States. Group discussions were transcribed and analyzed using a thematic analysis approach.ResultsWe identified 14 domains and 47 specific actions that patients, family members, and physicians associate with PFCC. In addition to providing a detailed matrix of these domains and actions, this paper details the actions associated with the “dignity and respect” concept. Key domains identified under “dignity and respect” include: 1) building relationships, 2) providing individualized care, and 3) respecting patients’ time. Within these domains we identified specific actions that break down these abstract ideas into explicit and measurable units such as taking time, listening, including family, and minimizing wait times. We identified 9, 6, and 3 specific actions associated, respectively, with building relationships, providing individualized care, and respecting patients’ time.ConclusionsOur work fills a critical gap in our ability to understand and measure PFCC in ambulatory care settings by breaking down abstract concepts about PFCC into specific measurable actions. Our findings can be used to support research on how PFCC affects clinical outcomes and develop innovative tools and policies to support PFCC.

Highlights

Patient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making
This paper is the result of a collaboration between the American College of Physicians, the Institute for Patientand Family-Centered Care (IPFCC), the National Partnership for Women & Families, and Kaiser Permanente Washington Health Research Institute
We began with a series of focus groups to elicit behaviors and actions that patients, family members, and physicians associate with PFCC

Summary

Introduction

Patient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making. This paper provides a brief overview of all actions that focus group respondents associated with PFCC in ambulatory (outpatient) care settings and explores actions associated with the concept of “dignity and respect” in greater detail. The goal of our collaboration was to develop a behavior-based survey instrument to measure PFCC in primary care and other ambulatory care settings (such as outpatient specialty care). Because of its particular saliency to patients and families, the actions and behaviors associated with the PFCC concept of “dignity and respect” are described in detail in this paper. These findings fill a critical gap in PFCC research by making abstract concepts about PFCC more concrete, observable, and measurable

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Conclusion