Open and objective information sharing between families and providersĪll respect the skills and expertise brought to relationship Sharing honest and unbiased information in ways “useful and affirming”įree flow and accessibility of information Information sharing: complete and unbiased information sharing that is “affirming and useful” Open and objective communication and information sharing Institute for Patient- and Family-Centered Care (IPFCC) The following general principles are shared: Table 1 lists the principles developed by these groups. However, considerable agreement has been achieved on FCC principles, developed by groups such as Family Voices, the Maternal and Child Health Bureau (MCHB), the American Academy of Pediatrics (AAP), and the Institute for Patient- and Family-Centered Care.
Ī consensus definition of FCC practices and actions has not been achieved to date. Is FCC simply asking families what they want to do? Is it about family satisfaction, or quality health care? Ironically, such misunderstandings about appropriate processes of care can drive families and providers further apart. By itself, though, the term FCC is non-specific and lends itself to wide interpretation for implementation and measurement. The true story of Adam and his family (all names in this manuscript are changed) demonstrates FCC at its best, with information sharing, partnering, respect, and negotiation leading to a successful outcome in a difficult clinical scenario. The term is frequently accompanied by terms such as “partnership,” “collaboration,” and families as “experts” to describe the process of care delivery. Adam’s father held the tube in place for 72 h, and the tracheostomy tube successfully held.įamily-centered care is commonly used to describe optimal health care as experienced by families. After some discussion, the surgeon agreed to place the tracheostomy again. The father suggested to the surgeon that he would hold the tube in place himself and keep Adam calm. When the tube dislodged yet again, the surgeon and the parents had a team meeting to discuss possible options. The suturing caused Adam considerable pain. After the third dislodging, the tube was sutured in place at the bedside.
After Adam underwent surgery, the tracheostomy tube dislodged 3 times during the first night post-op. We highlight advances in FCC practices in child health and suggest ways to advance the state of FCC in pediatric health care.įamily-centered care can be illustrated with the following case:Īdam, age 5, was referred for a tracheostomy due to chronic lung disease, vocal cord paralysis, and recurrent aspiration. This commentary on the state of FCC in child health draws on the diverse clinical, research, and advocacy experience of the authors. More than anything else, FCC is an attitude change in the way clinical care is delivered, as families-as-partners fundamentally challenge the care paradigm of unilateral responsibility for decision-making. FCC cannot deliver on its promises unless greater understanding and support for FCC are achieved by health care providers.
Fundamental misunderstandings persist about what FCC is, how to implement FCC, and how to determine the family-centeredness of care. As a philosophy of care, FCC, and the related term patient-centered care (PCC), have been recognized by multiple medical societies, health care systems, state and federal legislative bodies, the Institute of Medicine, and Healthy People 2020 as integral to patient health, satisfaction, and health care quality.
Family-centered care (FCC) has been described as a partnership approach to health care decision-making.