Family Impact of Child Oro-Facial Cleft

Abstract

Objective: To describe the association between children’s orofacial cleft (OFC) and families’ quality of life (QoL), using the short-form Family Impact Scale questionnaire (FIS-SF). Also assessed were the psychometric properties of the FIS-SF, as well as whether certain demographic and clinical variables impacted the family. Design: Observational cross-sectional study. Setting: Tertiary care public children’s hospital in New South Wales, Australia. Participants: Parents/caregivers of children with OFC. Main outcome measure(s): The short-form Family Impact Scale questionnaire. Results: Two hundred and fourteen parents completed the FIS-SF. Excellent convergent validity was evident, but discriminant validity was weaker. Those children with velopharyngeal insufficiency/submucous cleft reported lower scores on the family/parental activity, and lower overall family impact scores than those with cleft lip (CL) or cleft palate (CP). Those with cleft lip and palate (CL/P) had poorer family/parental activity scores than those with CP. There were no systematic differences in FIS-SF scores by the child’s age, gender, private health insurance, living location, the number of cleft-related operations, or whether a child had commenced orthodontic treatment. Conclusions: The FIS-SF is a valid and reliable measure for determining the impact that OFC has on family QoL. The impact of OFC on children’s families differs according to cleft type.

Velopharyngeal Inadequacy-Related Quality of Life Assessment: The Instrument Development and Application Review

“…Meanwhile, QOL should not be limited to the patient as circumstance of the disease influences the QOL of the whole family. In addition, there are some instruments pay attention to the QOL of family members ( 44 , 45 ).…”

A Comparative Study of Oral Health-Related Quality of Life among Cleft Lip and Palate Patients and Their Families during Orthodontic Treatment

“…The family’s perspective should also be assessed because chronic illness, such as cleft lip and palate, inevitably impacts the day-to-day functioning since health care interventions will lead to family needs and concerns [ 30 ]. Family activities, parental emotions and family conflict were identified as significant factors negatively affecting parents OHRQoL in this total sample.…”

“…Family activities, parental emotions and family conflict were identified as significant factors negatively affecting parents OHRQoL in this total sample. Previous studies pointed out some factors that may explain the impact on quality of life of caregivers, namely repeated consultations, financial implications, parental time off work, less time for other family members, stigmatization and peer victimization of their child and the impact of orthodontic appliances in speech, mastication and social interaction of the child [ 30 , 31 ]. On the other hand, the family finances domain did not show a significant difference between the two groups ( p = 0.051).…”

“…The results obtained in this study can be explained by the homogenous age and sex group distribution of the sample. Recently, Agnew et al demonstrated no difference in FIS score by age, sex or whether a child had started orthodontic treatment [ 30 ].…”

Posttraumatic Growth and its Correlates Among Parents of Children With Cleft Lip and/or Palate

“…[3][4][5] The concept of child health includes both the child and the family because of children's dependence on their caregivers and family. 6 Studies have shown that the sociodemographic characteristics and the health status of mothers are associated with parent-child interactions, which as a result may influence the children's health outcomes. 7 Hence, the psychological adjustment of parents of children with CL/P is an important research subject.…”