The relationship between family-centeredness of service delivery and parental satisfaction with home and community participation of their children with cerebral palsy

Abstract

This descriptive and exploratory study aimed to examine the relationship between family-centeredness of service delivery and home and community participation of children with cerebral palsy. It was hypothesized that there would be a significant association between family-centeredness of service delivery and parental satisfaction with home and community participation in the group of school-aged children with cerebral palsy. A convenience sample included 110 children with cerebral palsy, aged 7-18 years (55% males; M age = 12.7 years, SD = 3.41). The Measure of Processes of Care (MPOC-20) was used to assess the extent to which parents of children with cerebral palsy perceived health and rehabilitation services they had been receiving as being family-centered. Overall parental satisfaction with their child's home and community participation was evaluated by the Participation and Environment Measure for Children and Youth (PEM-CY). Analyses were performed using Spearman's rank correlation test. Only two out of 10 tested correlations reached the level of statistical significance, both in home environment. Parents who had higher overall satisfaction with their child's current home and community participation perceived certain aspects of health and rehabilitation services as being family-centered to a greater extent (general and specific information). The fulfilment of parents' needs by presenting them general and child-related information could have a positive effect on their satisfaction with their child's home participation. The findings suggest insufficient representation of the concept of participation and family-centered work principles in service planning and the evaluation of outcomes of the applied programs.

Cilj ove deskriptivne i eksplorativne studije je bio da se ispita odnos između usmerenosti na porodicu u pružanju usluga i participacije dece s cerebralnom paralizom u kućnom okruženju i okruženju zajednice. Postavljena je hipoteza prema kojoj postoji statistički značajna povezanost između usmerenosti na porodicu u pružanju usluga i roditeljskog zadovoljstva participacijom u kućnom okruženju i okruženju zajednice u grupi dece s cerebralnom paralizom školskog uzrasta. Prigodan uzorak je obuhvatio 110 dece s cerebralnom paralizom starosti 7-18 godina (55% muškog pola; prosečnog uzrasta 12,7 godina, SD = 3.41). Za procenu obima u kojem roditelji dece sa cerebralnom paralizom doživljavaju dobijene zdravstvene i rehabilitacione usluge kao usmerene na porodicu korišćena je skala Merenje procesa nege (Measure of Processes of Care - MPOC-20). Sveukupno roditeljsko zadovoljstvo participacijom deteta u kućnom okruženju i okruženju zajednice procenjeno je primenom Testa za procenu participacije i okruženja - Deca i mladi (Participation and Environment Measure for Children and Youth - PEM-CY). Analize su izvršene pomoću koefcijenata Spirmanove korelacije ranga. Samo dve od 10 testiranih korelacija dostigle su nivo statističke značajnosti, obe u kućnom okruženju. Roditelji koji su izrazili veće sveukupno zadovoljstvo trenutnom participacijom svog deteta u kućnom okruženju i okruženju zajednice doživljavali su određene aspekte zdravstvenih i rehabilitacionih usluga kao usmerene na porodicu u većem obimu (opšte i posebne informacije). Pružanjem opštih informacija i informacija o detetu ispunjavaju se roditeljske potrebe što može imati pozitivan uticaj na njihovo zadovoljstvo participacijom dece u kući. Nalazi ukazuju na nedovoljnu zastupljenost koncepta participacije i principa rada usmerenog na porodicu u planiranju usluga i evaluaciji rezultata primenjenih programa.