Inpatient Family Centered Care for Children with Special Health Care Needs

Purpose and Problem Statement: Children with special health care needs (CSHCN) represent approximately one in seven children under the age of 18 in the United States. This population utilizes health care resources more frequently and represents significant portion of hospitalized children. Involving parents in the process of being a part of their child’s health care team may allow them to better care for their child while in the hospital and upon discharge home. Family centered care (FCC) serves as the standard of care in pediatric institutions to reach improved levels of care and outcomes. The purpose of this project was to review the current evidence pertaining to the effects of family centered care in parents of CSHCN while hospitalized. The PICOT format was used to develop the following question: In parents (P) of children with special healthcare needs, does family centered care (I) during inpatient hospitalization (T) improve child and family outcomes (O)?

Methodology: Databases including CINAHL, Academic Search Premier, Psych Info, and Medline, were searched (2003 to present) using the following keywords: children with special healthcare needs, CSHCN, families, parents, family centered care, FCC, outcomes, experiences, pediatric, hospitalization. An ancestry search was also performed. The titles and/or abstracts from 44 articles were reviewed with a total of 21 being relevant to the clinical issue. Studies were evaluated for level of evidence and relevance to the review purpose.

Results: Findings supported many positive aspects of FCC for parents of CSHCN. In particular, FCC seemed to help with overall stability of the family unit during hospitalization. Other important aspects of FCC include improved communication between care givers, providers and parents, assistance with psycho-social concerns, improved behavioral adaptation, decreased length of stay, and overall improvement in family satisfaction.

Significance: There is a great deal to consider when caring for children with special healthcare needs and their families during hospitalization. Nurses bridge relations between ancillary staff, providers and parents and they also serve as educators and advocates for their patients. Important future research for nursing includes improving cultural competency to positively impact FCC, further evaluating nurse and parent perspectives regarding barriers to FCC, improved communication tools to foster FCC, relationship building and the nurses role in regards to FCC and the nurses role in telemedicine for rural outreach and the potential for FCC in that service arena. Nurses are the force behind incorporating parents and caregivers in decision-making and caregiving. Working collaboratively nurses and parents of children who have special health needs have the potential of forming a strong alliance to positively impact care.