Parent-Reported Family Functioning among Children with Cleft Lip/Palate

Abstract

Objective To examine family functioning related to sociodemographic and clinical characteristics in youth with cleft lip and/or palate (CL/P). Design Cross-sectional, multisite investigation. Setting Six U.S. cleft centers. Patients/Participants A diverse sample of 1200 children with CL/P and their parents. Main Outcome Measure Parents completed the Family Environment Scale (FES), which assesses three domains of family functioning: cohesion (or closeness), expressiveness (open expression of feelings), and conflict. Demographic and clinical characteristics were also assessed including race, ethnicity, type of insurance, and surgical recommendations. Results The FES scores for families seeking team evaluations for their youth with CL/P (mean age = 11.6 years) fall within the average range compared with normative samples. Families receiving surgical recommendations for their youth also had FES scores in the average range, yet families of children recommended for functional surgery reported greater cohesion, expressiveness, and less conflict compared with those recommended for aesthetic surgery (P < .05). For cohesion and expressiveness, significant main effects for race (P = .012, P < .0001, respectively) and ethnicity (P =.004, P < .0001, respectively) were found but not for their interaction. No significant differences were found on the conflict domain. Families with private insurance reported significantly greater cohesion (P < .001) and expressiveness (P < .001) than did families with public insurance. Conclusions Family functioning across domains was in the average range. However, observed differences by race, ethnicity, type of insurance, and surgical recommendation may warrant consideration in clinical management for patients and families.

Psychological adjustment to cleft lip and/or palate: A narrative review of the literature

“…Nonetheless, two studies reported CL/P to have a negative impact on family life (Kramer et al, 2009;Gkantidis et al, in press). Ethnicity was also associated with greater family cohesion in one study (Crerand et al, 2015).…”

“…Similarly, children with CL/P were found to demonstrate more autonomous behaviour and to interrupt their parent less frequently (Gassling, Christoph et al, 2014). According to self-reports, individuals with CL/P described normal or particularly close relationships with family members (Cheung et al, 2006;Gussy & Kilpatrick, 2006;Oosterkamp et al, 2007;Chimruang et al, 2011;Crerand et al, 2015;Gkantidis et al, in press), which was believed to act as a buffer against Downloaded by [Library Services, University of the West of England] at 07:02 08 February 2016 social challenges (Hall, Gibson, James & Rodd, 2013;Tiemens et al, 2013;Stock, Feragen et al, in press). Nonetheless, two studies reported CL/P to have a negative impact on family life (Kramer et al, 2009;Gkantidis et al, in press).…”

Caregiver responses to early cleft palate care: A mixed method approach.

“… 1 (Rief, Nanke, Klaiberg, & Braehler, 2004) 2 (Lowe et al, 2008) 3 (Reitman, Currier, & Stickle, 2002) 4 (Crerand et al, 2014) 5 (University of Wisconsin & Maccubbin, 1987) 6 (Glaesmer et al, 2012) …”

Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being

“…This study also examined family functioning with the Family Environment Scale. While family functioning was within the normal range, specific areas (e.g., race, ethnicity, type of insurance, and clinical need) were related to 2 domains of family functioning: cohesion (commitment and support within families) and expressiveness (expression of feelings within families; Crerand et al 2015). Specifically, non-Hispanic and/or White families and those with private insurance reported greater cohesion and expressiveness than African American and Latino families and those with public insurance, respectively.…”