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Health care consumers are under-represented in literature when defining patient and family engagement. The proportion of people living longer is rapidly growing. Future research is needed to evaluate which strategies of patient and family engagement are most useful in real-world health care settings for patient and families. The purpose of this study was to describe the lived experiences of patient/family advisors working within patient family advisory councils at an academic medical center in the Midwestern United States. The conceptual framework is based on Greenleaf's servant leadership and Bass's transformational leadership. The research questions examined how patient/family advisors describe patient and family engagement, their experiences from the advisor program, and what is most meaningful to them. A phenomenological design was employed with a purposeful sample of 19 interview respondents drawn from 5 different advisory councils. Data analysis consisted of interpretive phenomenological analysis and a detailed, in-depth account of participant experiences. Transcripts from semi structured face-to-face interviews were collected, coded, validated by member checking, and triangulated with emergent themes. Emergent themes included patient/family advisors' descriptions of patient and family engagement within the patient family advisory councils and organizational efforts most meaningful to patient/family advisors. The results of this study may help create social change by improving the standards and quality of patient and family engagement by preparing health care professionals to better meet the needs of health care consumers.
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