Parent and Healthcare Professional Perspectives On Family-Centered Care for Children with Special Healthcare Needs: Are We On the Same Page?

Background/Purpose:

A robust body of literature has documented the medical and psychosocial benefits of family-centered care (FCC) for children with special healthcare needs (CSHCN) and their families. Less is known about the actual practice of FCC, especially from the viewpoints of both parents of CSHCN and healthcare professionals(HCP), and the limited research on cross-informant agreement about FCC has primarily occurred outside of the United States. Objectives of this research included quantifying FCC practices in a U.S. sample of interdisciplinary HCP and comparing parent and HCP perceptions of FCC. Based on prior literature, it was hypothesized that no differences in perspectives of FCC practices would emerge between the two stakeholder groups.

Methods:

A random sample of 351 families of CSHCN who received services from social work, physical therapy, occupational therapy, or speech therapy during a six-month period at a large, urban medical center were recruited. All HCP from the four disciplines (n=69) who provided services during the same time period were invited to participate. Participants completed parallel, self-report versions of the Measure of Process of Care (MPOC) (King, Rosenbaum, & King, 1995), a standardized index of FCC practices comprised of four domains: Providing General Information (PGI), Providing Specific Information (PSI), Respectful and Supportive Care (RSC), and Enabling and Partnership/Showing Interpersonal Sensitivity (EP/SIS). Each domain is scored on a 7-point rating scale, with higher scores reflecting greater FCC practices. A mixed-model, repeated measures ANOVA was conducted to test for group differences between parents and HCP on the four matched domain scores.

Results:

The participating parent (n = 132) was generally the female caregiver (85%) and Caucasian (55%). The most common child diagnoses were ADHD (n = 22), cerebral palsy (n = 19), and autism spectrum disorders (n = 18). All HCP (n = 43) were female; a majority was Caucasian (84%) and in full-time (91%), in-patient (58%) positions for an average of 7 years. There was a fairly even representation of professional disciplines. No significant differences were found between parents and HCP (F(1,133)=.335, p>.05) on any of the MPOC domains. Significant differences were detected among the four domains (F(1, 133)=58.96, p<.001). Post hoc analyses revealed differences between each pair of domain scores with the exception of PSI (M=5.51) compared to EP/SIS (M=5.57). The PGI domain received the lowest score (M=4.29), and RSC the highest score (M=5.96).

Conclusions/Implications:

Parents of CSHCN and HCP were aligned in their perspectives on the extent of FCC practices. However, the four MPOC domain scores were modest, with low ratings particularly striking for PGI. Findings suggest that HCP are generally meeting families' needs for specific communication about their CSHCN and are respectful of parents' expertise and competence in their caregiving role. Results indicate that continued growth in the area of providing holistic, comprehensive practices that address the multifaceted needs of CSHNC and family members is warranted to advance FCC.

King, S., Rosenbaum, P., & King, G. (1995). The Measure of Process of Care: A means to assess family-centered behaviors of healthcare providers Hamilton, ON: McMaster University.