Empowerment in families raising a child with cerebral palsy during early childhood: Associations with child, family, and service characteristics

Abstract

BackgroundInsight into family empowerment is important in order to develop and offer services that support and strengthen parents caring for a child with disability. The aims of this study were to describe empowerment trajectories among parents caring for a young child with cerebral palsy (CP) and to explore associations between parental empowerment and characteristics of the child and family and the services they receive.Methods58 children (median age at first assessment 28 months, range 12–57) and their parents were included in a longitudinal cohort study based on registry data from follow‐up programmes for children with CP in Norway. Parental empowerment trajectories were described by averaging scores in the three subscales of the Family Empowerment Scale (FES; family, service situations, and community) at enrollment and at semiannual/annual assessments. A linear mixed model was used to explore associations.ResultsParental empowerment scores on the FES in family and service situations were high and stable during early childhood, although considerably lower in the community context. In service situations, perceived empowerment was significantly associated with both child, family, and service characteristics, whereas empowerment in family situations was only associated with family characteristics. The service factor having a multidisciplinary support team was positively associated with perceived empowerment in both service situations and in the community.ConclusionKnowledge about parental empowerment in different contexts and associations with characteristics of the child and family and the services they receive can contribute to further reinforcing family empowerment and identifying parents in need of additional support.

The relationship between the Family Empowerment Scale and Gross Motor Function Measure‐66 in Young Children with cerebral palsy

“…One explanation for this finding is that children who are GMFCS Levels IV or V have the most complex needs (Palisano et al, 2010) and these families may have the least amount of resources for advocacy as a result. In contrast, Kalleson et al (2019) found that empowerment was lower within the community/political environment in families of children who are GMFCS Levels II or III compared with those who are GMFCS Levels IV or IV. In addition, our families reported higher levels of empowerment in all subscales of the FES compared with Kalleson et al who reported a mean of 2.4 for the community/political subscale compared with our mean of 2.9.…”

“…Significant relationships were found between the FES family subscale and GMFM‐66, GMFM Dimension B sitting and GMFM Dimension D standing, but not with GMFM Dimension C crawling and kneeling and GMFM Dimension E walking, running and jumping. Interestingly, Kalleson et al (2019) also reported no differences in the FES family subscale in children with CP grouped by GMFCS level. Although not the same as family empowerment, differences in family ecology with regard to family expectations, expected achievement and levels of control were reported to vary by GMFCS level in a large study of children with CP by LaForme et al (2014).…”

“…The GMFM is the gold standard measure of gross motor function in children with CP, and its relationship to family empowerment has not yet been reported. This approach can be contrasted to the existing literature, which reports use of the ordinal GMFCS scale as a functional classification system to explore differences in family empowerment by GMFCS level stratification (Kalleson et al, 2019). The strength of the relationships between the total FES and GMFM-66 total score along with the GMFM dimensions can be interpreted as fair to good, suggesting that caregivers of children with higher gross motor function report higher levels of family empowerment.…”

“…The role of school may be especially relevant because other researchers have reported that families report new challenges when children with CP are in school (Majnemer, Shevell, Law, Poulin, & Rosenbaum, 2012). Interestingly, Kalleson et al (2019) found that FES scores remained stable over a 36‐month long follow‐up period, which may have included some children who were starting school, but additional research on family empowerment as children with CP age and family burden either increases or decreases is required. Finally, the collection of additional demographic and family characteristic data would be useful to determine the role of these factors (LaForme et al, 2014; Vuorenmaa, Perälä, Halme, Kaunonen, & Åstedt‐Kurki, 2016) in empowerment for the families with children with CP.…”

“…While there are specific criteria for the classification of GMFCS levels for children based on age using the GMFCS Expanded and Revised (E & R) (Palisano, Rosenbaum, Bartlett, & Livingston, 2008), children who are GMFCS Level I walk without limitations, children who are GMFCS Level II ultimately walk with limitations but without an assistive device, children who are GMFCS Level III walk using a held mobility device, children who are GMFCS Level IV have persistent limitations in self‐mobility and children who are GMFCS Level V are transported in a manual wheelchair (Palisano et al, 1997). To date, the only investigation that used the FES to measure family empowerment in children with CP was completed by Kalleson, Jahnsen and Østensjø (2019). These researchers investigated the relationship between characteristics of the child, family and services with the FES in children under the age of 5 with CP and found that parental empowerment in service situations decreased when comparing children who are GMFCS Levels II or III to children who are GMFCS Level I and decreased within the community/political environment when comparing children who are GMFCS Levels II or III to children who are GMFCS Levels IV or V.…”