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Satisfaction With Health Care in Families Following a Diagnosis of Cleft Lip and/or Palate in the United Kingdom.

  • Costa, Bruna1
  • White, Paul2
  • Stock, Nicola Marie1
  • 1 Centre for Appearance Research, University of the West of England, Bristol, United Kingdom. , (United Kingdom)
  • 2 Applied Statistics Group, University of the West of England, Bristol, United Kingdom. , (United Kingdom)
Published Article
The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
Publication Date
Dec 09, 2019
DOI: 10.1177/1055665619888318
PMID: 31813267


Having a child born with a cleft lip and/or palate (CL/P) poses several challenges for new parents and can have a significant psychological impact on the family as a whole. Previous research has indicated that dissatisfaction with health care is a risk factor for poor parental adjustment and family functioning. Yet, knowledge is lacking in regard to which aspects of care parents may be dissatisfied with. The current study aimed to comprehensively evaluate health-care satisfaction in families following a diagnosis of CL/P by utilizing data collected from a UK-wide birth cohort. Self-reported questionnaire data were obtained from 517 parent dyads enrolled in The Cleft Collective Birth Cohort Study. The "Pediatric Quality of Life Inventory-Healthcare Satisfaction Generic Module" was used as the primary outcome measure. Overall, parents were satisfied with the care they had received. However, less favorable scores were identified in relation to the information parents had been given. A good degree of agreement between mothers and fathers was observed. However, marginal evidence suggested that fathers were significantly more dissatisfied than mothers regarding the "Communication" and "Inclusion of Family" subscales. Although the findings of this large-scale study reflect overall health-care satisfaction, issues are raised in relation to the quality of information families received, particularly for fathers. In addition, fathers may feel less included in their child's treatment pathway. These findings offer practical suggestions as to which areas of care could be targeted by all health professionals to improve parents' health-care experiences and promote overall familial adjustment.

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