Measures of Family Centeredness from the U.S.: Deconstructing Components of Decision Making and Parents Needs

As the academic dialogue around models of care for children in hospitals evolves, the discussion about Family Centered Care (FCC) also warrants a closer look into the context of the culture, sociopolitical environment and service delivery differences across countries. The literature is expansive on the universe of families of sick children with a kaleidoscope of perspectives. The effectiveness of FCC has been disappointing using measures that are as diverse as the perspectives. The debate about effectiveness is skewed using the prism of focal points and countering arguments that are within those defined margins. The purpose of this session is to (1) begin with the premise that when dissected, the notion of “family centeredness” (i.e. an internalized attitude) may be at the heart of the implementation of FCC as demonstrated by similarities and differences among countries; (2) deconstruct three specific areas that parents are clearly a necessary component of sick children’s care (NICU, chronic illness and adolescents); (3) present a mechanism to measure family centeredness and a measure of parents’ needs to supplement the arguments supporting FCC that gets at the providers’ internalized attitudes and behavior about caring for parents and caring for children.

This session will make the case that FCC is critical as we move forward with CCC. If the way it has been examined is different, we need to take into account how, especially if it translates in some cultures into parents being held responsible for caretaking in hospitals (Shields, 2016). In the U.S., avoiding any integration of caring for parents of children in health care institutions in any philosophical or ethical discussion in the service delivery language would be a problem in a country where insurance drives every interaction and cost is part of the model. It would be too easy to operationalize the terms of “care” excluding the necessary integration of parents (families) into all aspects of decision-making and support if not explicitly included in best practices models. Using the U.S. frameworks of “Person and Family Centered Care” (Barnsteiner, Disch & Walton, 2014) can help to lay the framework of identifying child-and-family (parent) as a unit of care. “Empowering patients and families to become active partners in their health care — not merely passive participants — is a critical step on the road to achieving the best care at lower cost” (IOM, 2013).

Next, there will be three brief summaries of studies that focus on aspects that justify putting parents and children together as a unit of care in attitude and services. These include (1) a study on nurses’ “family-sensitive care” in neonatal intensive care units who fail to report positively about caring for parents of critically ill newborns and the ramifications of these attitudes (Magri, 2014); (2) two studies on shared decision-making (SDM) in adolescents with chronic illnesses and specifically with HIV who report the triad of SDM, in most cases, continue to tilt heavily on “mom’s” participation (Feeg & Ledlie, 2010; Knapp, Madden, Feeg, Huang & Shenkman, 2011; and (3) a study on parents’ needs of children with cancer, end stage renal disease (ESRD), chronic illnesses, and normal children who have episodic health care issues that offers a generic model of “parenting” to be further explored.

The session will conclude with important considerations about merging FCC and CCC with recognition of specific, focused attention on particular aspects of nursing caring behaviors. A simple measure of “Family-Centeredness” that elucidates attitudes that are central to caring ought to be considered in new models that might be proposed.