Family-centered Care in Cystic Fibrosis Largely Welcomed by Parents, Care Providers in Study – Cerebral Palsy News Today

Parents of children with cerebral palsy (CP), with other young patients, overall perceive family-centered care (FCC) as a positive approachand a good clinical practice for theprovision 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 carehas been offered to children with CP and their families for the past 20 years. The program is basedon 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 providersrecognized different needs exist within families, and that the parents are the realexperts in all things concerningtheir children.

Despite FCCs running fortwo decades, few studies have analyzed factors that can influence the child and the familys perception of this type of care.

Researchers at theUniversity of Brescia, in Italy, conducted a study to determine the overall opinion about FCC amongparents 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 titledMeasure 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 carein 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 completedthe 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 ofgeneral information was one area that could be improved (it had the lowest score in both groups).

Researchers also found that parentswho were of advanced maternal age, raising a child alone, unemployed, or ofa lower-socioeconomic status gavelower FCC scores and had a worse perception of the FCC. High-intensity treatment (defined more thanthree times a week), andinpatient services andprimary healthcare settings with limited financial resources and a minimal amount of space/time for each family wereother variables that met with low MPOC ratings.

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

Results also indicate a greater need for service providers toprovide 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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Family-centered Care in Cystic Fibrosis Largely Welcomed by Parents, Care Providers in Study - Cerebral Palsy News Today