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Satisfaction with health care in families following a diagnosis of cleft lip and/or palate in the United Kingdom

Costa, Bruna; White, Paul; Stock, Nicola Marie

Authors

Paul White Paul.White@uwe.ac.uk
Associate Professor in Applied Statistics



Abstract

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Journal Article Type Article
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
APA6 Citation Costa, B., White, P., & Stock, N. M. (in press). Satisfaction with health care in families following a diagnosis of cleft lip and/or palate in the United Kingdom. Cleft Palate-Craniofacial Journal, https://doi.org/10.1177/1055665619888318
DOI https://doi.org/10.1177/1055665619888318
Keywords Feeding, nursing, parental perception, psychological assessment, psychosocial adjustment, quality of life

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