Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care

Abstract

Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. This vision represents a shift in the traditional role patients and families have historically played in their own health care teams, as well as in ongoing quality improvement and care delivery efforts. PFEC also represents an important shift from focusing solely on care processes to aligning those processes to best address the health outcomes that matter to patients. In a culture of PFEC, patients are not merely subjects of their care; they are active participants whose voices are honored. Family and/or care partners are not kept an arm's length away as spectators, but participate as integral members of their loved one's care team. Individuals' (and their families') expertise about their bodies, lifestyles, and priorities is incorporated into care planning and their care experience is valued and incorporated into improvement efforts.

Implementation of a paediatric peripheral intravenous catheter care bundle: A quality improvement initiative

“…The voice of the consumer was used as a facilitator in the successful implementation by ensuring that the design of the intervention was what families needed . Communication, fear and apprehension, appreciation of skilled technicians and technology and recognition of the role of the care giver were recurrent themes during individual interviews.…”

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

“…In the recently published framework, “Patient and Family Engaged Care,” (Frampton et al, ), the authors proposed that professional environments should be created to allow and encourage nurses to use the full range of their skills and knowledge of family nursing acquired in their education and careers. Healthcare could be improved as well, with lower costs and better work experiences for nurses.…”

“…From a system‐theoretical approach, family has to be considered as a whole system and it implies that the illness of one family member affects the well‐being and daily routine of the whole family (Arestedt, Persson, & Benzein, ; Astedt‐Kurki, ; Bell, ; Wright & Leahey, ). The main tenet of family‐centred care is that families are encouraged to participate and be involved in the care of the affected family member (Haesler, Bauer, & Nay, ) and that their and the patient's preferences and care goals are valued (Frampton et al, ). Involvement is defined as the act or process of taking part in something (Heacock, ).…”

Experience of Care – Furthering the Patient Experience Agenda

“…Although Dr. Berwick brought forward "The Triple Aim" proving that improving patient satisfaction leads to increased health outcomes and decreased costs, burnout has been correlated to imperil it (Berwick et al 2008;Bodenheimer and Sinsky 2014). To have patients, families and caregivers partnering together in a meaningful way with the workforce may provide better engagement and greater joy in practice (Frampton et al 2017). All providers in their individual workplace settings, should be surveyed on their joy at work and workplace engagement.…”