Understanding mothers' perception of child's illness: Adapting the CONNECT Instrument for pediatrics

Aims and objectives To adapt the CONNECT Instrument for use in the paediatric population, to assess validity of this instrument after its adaptation and to assess concordance between mothers' perception of their child's illness and providers' understanding of mothers' perceptions. Background The CONNECT Instrument (Patient Education and Counseling, 73, 2008, 232-239) was validated in an adult outpatient population to characterise both patients' perspectives and physicians' understanding of their patients' perspectives for several dimensions of the illness experience. However, this did not include the paediatric population or advanced practice providers. Design A two-part prospective, cross-sectional, observational study to assess the validity of CONNECT for Pediatrics and to assess perception of illness. Methods The CONNECT Instrument (Patient Version) was adapted from its original form and modified to CONNECT for Pediatrics to facilitate use in the inpatient paediatric population. Eighty-five participants were enrolled including mothers, advanced practice providers and physicians from 2013-2014 during a child's scheduled admission to a paediatric epilepsy monitoring unit. Principal components analysis and inter-item reliability were analysed, and differences in the six mean domain scores were assessed using repeated measures analysis of variance (RM-ANOVA). Reporting of this research adheres to the STROBE guidelines (See Appendix S1). Results Our analysis indicated that the modifications made provided a relatively valid and reliable instrument. There were overall statistically significant differences between the mother and physician groups, specifically in the domains of meaning and preference for partnership. Conclusions Paediatric advanced practice providers and physicians do have an understanding of mothers' perception of illness. Relevance to clinical practice The ability of physicians and advanced practice providers to understand mothers' perceptions of illness is increasingly important in a changing healthcare environment. CONNECT for Pediatrics facilitates the identification of mothers' perception of their child's illness and provides the opportunity for paediatric advanced practice providers and physicians to understand parents' perception of illness.