Encouraging Partnerships With the Health Care Team
Encouraging Partnerships With the Health Care Team
Beyond partnering in direct care, some patients and family members can participate more broadly within health care institutions. For many years, the Family Advisory Council (FAC) or Family Advisory Board (FAB) has been an effective structure used by hospitals to elicit patient and family input in institutional policy and program development. As further evidence of the growth and evolution of PFCC, several conference sessions discussed adaptations of the standard FAC or FAB (considered "specialty councils") designed to meet the needs of specific patient and/or family populations.
In 2008, in response to changing demographics, Children's Mercy Hospital in Kansas City, Missouri, developed its Latino Advisory Board or El Consejo de Familias Latinas/Hispanas. Led by a parent leader and a bilingual staff member, the Board's monthly meetings are conducted in Spanish. Since its inception, the Consejo has guided projects for bilingual signage, Spanish radio health messaging, and Spanish videos to orient patients and families to the hospital (Flores, 2012).
Recognizing that teen and young adult patients have different needs than younger children, some pediatric hospitals have created specialty councils for that population. At the conference, four teens and two staff facilitators presented the experience of Children's Hospital Boston in this regard (Greene et al., 2012). With teens comprising 33.9% of its patient population, the hospital has had a Teen Advisory Committee since 2002. Teen members are carefully selected and represent a range of diagnoses. Over the years, the Committee has taken on a variety of projects: designed orientation videos for new teen patients, developed a Web site, conducted a research project on teen involvement in decision-making, helped design an inpatient teen activity room, and hosted parties for adolescent patients.
Increasingly, the important role of patients and families as subject-matter experts in the education of clinicians is also being recognized, and several sessions at the IPFCC conference shared innovative strategies and programs for this level of partnership.
As part of their professional development programs, both Dartmouth-Hitchcock Medical Center (Bertrand, Blum, Huntington, & Lones, 2012) and St. Louis Children's Hospital (Crow & Wolf, 2012) train and use patient/family advisors in simulated learning experiences, from development of materials to acting to debriefing.
Another conference session discussed two innovative programs funded by the Schwartz Center for Compassionate Healthcare, which involve patients and family members as educators (Dokken, Jain, & Mann, 2012).
Supporting Broader Family Roles in the Institution and Health Care System
Beyond partnering in direct care, some patients and family members can participate more broadly within health care institutions. For many years, the Family Advisory Council (FAC) or Family Advisory Board (FAB) has been an effective structure used by hospitals to elicit patient and family input in institutional policy and program development. As further evidence of the growth and evolution of PFCC, several conference sessions discussed adaptations of the standard FAC or FAB (considered "specialty councils") designed to meet the needs of specific patient and/or family populations.
In 2008, in response to changing demographics, Children's Mercy Hospital in Kansas City, Missouri, developed its Latino Advisory Board or El Consejo de Familias Latinas/Hispanas. Led by a parent leader and a bilingual staff member, the Board's monthly meetings are conducted in Spanish. Since its inception, the Consejo has guided projects for bilingual signage, Spanish radio health messaging, and Spanish videos to orient patients and families to the hospital (Flores, 2012).
Recognizing that teen and young adult patients have different needs than younger children, some pediatric hospitals have created specialty councils for that population. At the conference, four teens and two staff facilitators presented the experience of Children's Hospital Boston in this regard (Greene et al., 2012). With teens comprising 33.9% of its patient population, the hospital has had a Teen Advisory Committee since 2002. Teen members are carefully selected and represent a range of diagnoses. Over the years, the Committee has taken on a variety of projects: designed orientation videos for new teen patients, developed a Web site, conducted a research project on teen involvement in decision-making, helped design an inpatient teen activity room, and hosted parties for adolescent patients.
Increasingly, the important role of patients and families as subject-matter experts in the education of clinicians is also being recognized, and several sessions at the IPFCC conference shared innovative strategies and programs for this level of partnership.
As part of their professional development programs, both Dartmouth-Hitchcock Medical Center (Bertrand, Blum, Huntington, & Lones, 2012) and St. Louis Children's Hospital (Crow & Wolf, 2012) train and use patient/family advisors in simulated learning experiences, from development of materials to acting to debriefing.
Another conference session discussed two innovative programs funded by the Schwartz Center for Compassionate Healthcare, which involve patients and family members as educators (Dokken, Jain, & Mann, 2012).
Since 2008, the Department of Family Medicine at Lehigh Valley (Pennsylvania) Health Network has conducted its "Patients with Disabilities as Teachers" (PDAT) program in which medical students are trained about "disability etiquette" by patients with disabilities and their families in three-hour workshops.
From 2005 to 2010, the Initiative for Pediatric Palliative Care (IPPC) has offered two-and-a-half-day retreats throughout the country, bringing together interdisciplinary teams of family members and clinicians for interactive educational and organizational change activities. A best practice document entitled "Families as Educators: Guidance for Imple mentation" summarizes the IPPC experience and is available for download (http://www.ippcweb.org/Best-Practices.pdf).
