Family-Centered Care in Pediatric Health Settings

Introduction to Family-Centered Care

Family-centered care (FCC) is something that many in health care seem resistant to, yet it can be an empowering and positive experience for the families who receive it and the care providers who deliver it. FCC is a health care delivery model that seeks to fully involve families in the care of children through an approach that is respectful and supportive (Bruce et al., 2002, p. 408). The care provider, the family members, and the child in care together develop a treatment plan that builds on strengths rather than shortcomings — such as those illustrated by Debra Raofian in "Omid's Story." Building a positive communication environment allows both parties to express positives as well as possible fears that may need to be addressed.

Raofian's account of her supportive early years with her son in medical care aligns with Bruce and colleagues primarily in the manner in which FCC is delivered and the positive outcomes it creates. In Raofian's experience, all of the elements of FCC were met or exceeded — so much so that when she later faced an encounter that did not include FCC as a model of care, she and her husband were surprised and frustrated by the level of dissatisfaction they felt (Raofian, 2003, pp. 227–231).

The Eight Core Elements of FCC

According to Bruce and colleagues, the eight equally necessary aspects of FCC include: recognition that the family is the constant; parent/professional collaboration; acknowledgment of family strength and individuality; sharing information with parents; parent-to-parent support and encouragement; understanding the developmental needs of the child; emotional and financial support to meet family needs; and a flexible and accessible health care delivery system (2002, p. 410).

Raofian expresses in her work that these elements of care were not only provided from day one in the support of her premature son, Omid, but were followed through on a daily basis — with the acknowledgment that the family would likely need lifelong support for a child born under such traumatic circumstances. This is something the final supportive referring physician makes explicit as a matter of course: "For a child that had such a difficult and complicated start, why is he doing so well, and as parents, what are you doing to help him have such strengths?" (Raofian, 2003, p. 229). This question opens a dialogue that is supportive of all the FCC elements.

In the process of diagnosis and treatment, the development of a collaborative communicative relationship with parents is of great value, as the family and the delivery system are then afforded the opportunity to learn from the care situation in a positive, self-determined manner (Bruce et al., 2002, p. 411). One aspect not explicitly addressed in this framework is that the learning facilitated when parents serve as supported collaborators in their child's care can develop the family in such a way that the child may learn — by example — how to advocate for him- or herself as a young adult. This dimension of self-efficacy can be invaluable for an individual with behavioral and social challenges associated with learning and social needs.

FCC in Practice: Omid's Story

Other aspects of the final positive FCC delivery encounter in Raofian's narrative specifically address the nature of Omid's diagnosis, which was given by a practitioner with the family's perspective in mind. This practitioner appeared to be aware of Omid's strengths from the outset, rather than assuming — as the first physician did — that the parents were simply outsiders misinterpreting their child's behavior. The FCC practitioner developed a rapport with the family that was positive, productive, and respectful of both Omid's medical needs and the family's financial realities, demonstrating that the delivery system was both collaborative and flexible. Because Omid had a long list of strengths, he did not require the kind of care that would have been imposed by an ADHD diagnosis. He needed focused intervention, which the appropriate diagnosis made possible (Raofian, 2003, pp. 229–230).

One way in which Raofian's story is particularly striking is that up to the age of five, she had not encountered anyone who matched the non-communicative model displayed by the first developmental physician she saw with Omid — a testament to how consistently FCC had been practiced throughout Omid's early care. The contrast, when it finally arrived, was jarring precisely because the family had come to expect a collaborative standard.

Conclusion: Impact of FCC on Children and Families

It is clear that caring for the child is not simply caring for the child. In a nursing situation — or any health care delivery situation — the standards established by the family's early impression of FCC-supportive care can make or break subsequent experiences, and can profoundly affect outcomes for children. Raofian, even though she, her husband, and Omid had had very positive medical experiences in the past, recognized immediately when they were facing an encounter that was not FCC-driven, and it simply felt wrong — not what their son needed (Raofian, 2003, pp. 227–231).

The early intervention models discussed in Bruder's article (2000, p. 105) are also demonstrative of how it feels to be on the losing end of an inflexible and unresponsive medical situation with little or no collaborative support. The tendency of delivery personnel to be non-responsive to parents' needs — giving parents the false impression that their own observations and instincts do not matter — is a significant failure of FCC practice. As Bruce and colleagues make clear, education and training in communication are key to a resolution (2002, p. 411). When care providers are equipped to engage collaboratively and empathetically with families, the entire health care experience is transformed for children and their families alike.