Family-centered Care in Cystic Fibrosis Largely Welcomed by Parents, Care Providers in Study

Family-centered Care in Cystic Fibrosis Largely Welcomed by Parents, Care Providers in Study

Parents of children with cerebral palsy (CP), with other young patients, overall perceive family-centered care (FCC) as a positive approach and a good clinical practice for the provision of services, a new study shows.

Findings were published in the article, “Family-centered care for children and young people with cerebral palsy: results from an Italian multicenter observational study,” in the journal Child: Care, Health and Development.

Family-centered care has been offered to children with CP and their families for the past 20 years. The program is based on building a relationship between healthcare providers and parents, allowing parents to participate in the services offered and recommended for their children. The FCC program was put in place as healthcare providers recognized different needs exist within families, and that the parents are the real experts in all things concerning their children.

Despite FCCs running for two decades, few studies have analyzed factors that can influence the child and the family’s perception of this type of care.

Researchers at the University of Brescia, in Italy, conducted a study to determine the overall opinion about FCC among parents of children with CP, young people with CP, and professionals in Italian rehabilitation services.

Parents and young children from 17 rehabilitation centers in Italy were asked to complete the survey “Measure of Processes of Care” (MPOC-20), while service providers were asked to complete one titled “Measure of Processes of Care for Service Providers” (MPOC-SP).

Both are self-reported surveys, with the intent of determining family and service provider perceptions of the degree to which families are at the center of care in rehabilitation services.

Questions refer to behavior in the past year, and are scored on a seven-point scale with a higher value indicating better perception of the FCC.

The MPOC-20 consists of 20 items that evaluates opinions on five topics: enabling and partnership, providing general information, providing specific information, coordinated and comprehensive care, and respectful and supportive care.

The MPOC-SP comprises questions on these topics: showing interpersonal sensitivity, communicating specific information, providing general information, and treating people respectfully.

In total, 382 parents and 269 health providers completed the surveys.

Results show that parents perceived FCC as being “fair” to “moderate.” Both parents and service providers indicated enabling partnerships and interpersonal sensitivity as areas of FCC strength. They also noted that the providing of general information was one area that could be improved (it had the lowest score in both groups).

Researchers also found that parents who were of advanced maternal age, raising a child alone, unemployed, or of a lower-socioeconomic status gave lower FCC scores and had a worse perception of the FCC. High-intensity treatment (defined more than three times a week), and inpatient services and primary healthcare settings with limited financial resources and a minimal amount of space/time for each family were other variables that met with low MPOC ratings.

The team concluded that, overall, parents perceive FCC as being generally positive although some areas could be improved.

Results also indicate a greater need for service providers to “provide better communication and take more time in giving information and attention to parents,” the researchers wrote.

As the perception of FCC varies among patients from different backgrounds, the team believes that it is important to support services that can help different demographic groups of the society.

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