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

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.

Isolation, Uncertainty and Treatment Delays: Parents’ Experiences of Having a Baby with Cleft Lip/Palate During the Covid-19 Pandemic

“…Concurrently, access to antenatal and Fewer than 3 in 10 (32%) respondents felt confident they could find help for their mental health concerns. These findings may be particularly challenging for parents of children born with a health condition, such as CL/P, where the child has additional medical needs, and the psychological impact on parents is already known to be greater than in the general population (Stock et al, 2020).…”

“…Finally, many parents in this study were able to identify positive aspects of their difficult situation. Optimism and problem-solving have been shown to be effective coping strategies among parents of children with CL/P, particularly when faced with uncertainty (Fonseca et al, 2015;Sischo et al, 2016;Stock et al, 2020). Future research could investigate the potential impact of interventions aimed at increasing these coping strategies among parents of infants born with CL/P.…”

“…Extensive previous research has demonstrated the importance of support from healthcare professionals for parents following a diagnosis of CL/P. One large study based on UK cohort data found that satisfaction with healthcare was protective against psychological distress in both mothers and fathers of infants with CL/P (Stock et al, 2020). Two other quantitative studies also highlighted an association between reduced access to care and poorer parent and child outcomes (Bennett et al, 2018), and between parents' relationship with their CL/P team and healthcare satisfaction (Byrnes et al, 2003).…”

“…Having a baby born with a cleft lip and/or palate (CL/P) can have both social and psychological impacts for parents . While generally not in the range of clinical distress, research has indicated that parents of children with CL/P may be more likely than the general population to experience parenting stress (Boztepe et al, 2020;Stock et al, 2020), as well as symptoms of post-traumatic stress (Despars et al, 2011) and postpartum depression (Grollemund et al, 2020). Further, parenting a child with CL/P can affect overall familial quality of life (QoL; Antunes et al, 2014;Macho et al, 2017;Emeka et al, 2017).…”

Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate at Age 8+ Years

“…Analysis of the data collected from parents during the first 18 months has successfully demonstrated the research and clinical utility of the initial set of measures recommended for use from the point of diagnosis (see Stock et al, 2016). Specifically, the measures set has been used to assess parental well-being and child development compared to the general population, to evaluate parents’ satisfaction with health care, and to identify the risk and protective factors that contribute to psychological distress in parents (Stock et al, 2020; Costa et al, 2019). From the age of 8 years onward, the recommended set also includes self-report measures for completion by individuals born with CL/P.…”