Family-centred care for children and young people with cerebral palsy: results from an Italian multicenter observational study.

Abstract

Family‐centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families. To assess the overall perception of FCC provided in an Italian network of 17 rehabilitation services, as perceived by parents of children with cerebral palsy and professionals, and to explore whether children, families, service providers and service‐related characteristics influence parent satisfaction regarding service provision in an FCC practice. The Measure of Processes of Care (MPOC‐20) for parents/caregivers and the Measure of Processes of Care for Service Providers (MPOC‐SP) for healthcare providers were used. For the purposes of the study, an ad hoc information form was developed to collect information concerning children, families, service providers and services. A total of 382 parents/caregivers and 269 healthcare providers completed the MPOC questionnaires. Parents and service providers both identified the domains for enabling partnerships and interpersonal sensitivity as a strength, while the domain relating to general information was always scored the lowest. An advanced maternal age, being a single parent, being unemployed and having lower socio‐economic status were factors identified as individually predictive of lower FCC scores on the MPOC‐20. Higher intensity treatment, inpatient services, primary healthcare settings and settings identified with limited financial resources and reduced space/time for each family were other variables significantly associated with less favourable MPOC‐20 ratings. The perception of FCC provided was fairly positive, with some areas of improvement, such as the domain of provision of information. Professionals should, therefore, provide better communication and take more time in giving information and attention to parents. Potential sources of variation in parent perceptions of FCC based on family characteristics and the organization of services highlight the importance the need to support services through the provision of greater financial and human resources.