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The Craniofacial Collaboration UK (CC-UK) protocol is a shared agreement across the 4 UK Highly Specialist Craniofacial Centres (HSCCs) to conduct robust neurodevelopmental and psychosocial clinical screening for children with craniosynostosis. This agreement allows for the analysis of outcomes of a homogenous sample of children with single suture craniosynostosis (SSC), a frequent limitation of the existing research. The current study is the latest analysis of CC-UK data on behavioral, cognitive, and psychosocial outcomes. The focus of this analysis is 7- and 10-year-olds with nonsyndromic sagittal synostosis (SS) who have undergone primary corrective surgery and completed routine clinical screening at 1 of the 4 HSCCs since the introduction of the CC-UK protocol. Due to changes in clinical pathways, only data from 3 HSCCs is included to preserve homogeneity. Results show that the majority of children with SS fall within the average range across behavioral and neurodevelopmental domains. A notable exception was a task involving perceptual reasoning and visuomotor skills (Block Design). Although this difference was small and the mean score remained within the average range, it suggests some increased risk of subtle difficulty with such skills for children with SS. Across other measures, there was no consistent evidence of any significantly increased risk of poorer outcomes, in line with findings of previous CC-UK papers. Understanding the psychological phenotype of SS is a key research priority for parents and clinicians, and the current study is another step toward achieving this goal.
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OBJECTIVES: Professionals in the United Kingdom providing care to new families affected by cleft lip and/or palate (CL/P) had to adapt to ensure families' needs were met during a time of uncertainty due to Covid-19. The aims of this study were to explore the impacts of the pandemic on CL/P care provision for new families from the perspectives of professionals working in medical and community settings along with any personal impact on professionals and their reflections on the future of CL/P care. DESIGN: Semistructured interviews (n = 27) were completed about experiences from March 2020 to October 2020 with consultant cleft surgeons (n = 15), lead clinical nurse specialists (n = 8), and staff working at the Cleft Lip and Palate Association (n = 4). Transcripts were analyzed using inductive thematic analysis. RESULTS: Three themes were identified: (1) the impact of Covid-19 on the provision of cleft care in the United Kingdom, including working conditions, delays to treatment, and Covid-19 policies; (2) the impact of the pandemic on professionals' mental health, including personal distress and concerns about Covid-19 exposure; and (3) reflections on the future of CL/P care, whereby professionals expressed both hope and concern about the Covid-19 recovery effort. CONCLUSIONS: The ongoing Covid-19 pandemic has impacted CL/P service delivery for new families significantly, warranting recommendations for cohesive psychological support for families in addition to a safe and resourced recovery effort. Support for professionals is also suggested, following existing evidence-based models for providers' needs that address the difficulties of working throughout challenging times.
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COVID-19 , Fenda Labial , Fissura Palatina , Humanos , Fenda Labial/cirurgia , Fissura Palatina/cirurgia , Pandemias , Reino Unido , Seguridade SocialRESUMO
OBJECTIVES: Previous literature finds that having a child with a cleft lip and/or palate (CL/P) may pose social and emotional challenges for parents. For parents of children born during the Covid-19 pandemic, such challenges may be heightened. Further, novel demands brought about by the pandemic could have caused additional hardships. The aim of this study was to describe the impact of the pandemic on new parents through qualitative exploration of their experiences. DESIGN: Semi-structured interviews were conducted with 14 parents of children born in the United Kingdom with CL/P between January and June 2020, around the start of the pandemic. Data were analysed using inductive thematic analysis. RESULTS: Three themes, with sub-themes, were identified. The first theme, "Changes to Healthcare: The Impact of Restrictions and Reduced Contact", discussed the impact of the pandemic on perinatal care, the care received from the specialist CL/P teams, and parents' experiences of virtual consultations. The second theme, "Family Functioning During the Pandemic", covered parental anxiety, fathers' experiences, and social support. The third theme, "Surgical Prioritisation: Delays and Uncertainty", addressed changes to surgical protocols, coping with uncertainty, complications associated with delayed surgery, and how parents created positive meaning from this period. CONCLUSIONS: A range of increased and additional psychosocial impacts for parents were identified, along with several coping strategies, utilization of social support, and the positive aspects of their experiences. As the pandemic continues, close monitoring of families affected by CL/P remains imperative, particularly for those at risk of emotional distress.
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COVID-19 , Fenda Labial , Fissura Palatina , Acessibilidade aos Serviços de Saúde , Criança , Humanos , Fenda Labial/cirurgia , Fissura Palatina/cirurgia , Pandemias , Tempo para o Tratamento , Distanciamento Físico , Incerteza , Atenção à Saúde , Angústia PsicológicaRESUMO
BACKGROUND: The COVID-19 pandemic has put immense pressure on the National Health Service (NHS) and all healthcare professionals, not only physically but also mentally and the need to fully develop and implement a strategy to protect the mental health of healthcare professionals has never been more urgent. Research has demonstrated that staff can be supported by strengthening teams and offering frequent well-being support. AIMS: To assess the feedback from delivery of a strategy to provide psychological well-being support to NHS staff during the COVID-19 pandemic and whether this 'Support for Teams' initiative made a positive impact on staff and in what way. METHODS: A mixed methods design was used to gain quantitative and qualitative feedback from staff. Feedback was collected from two groups: Well-being Leads and clinicians providing support and resources to Well-being Leads. Feedback was collected via online forms. RESULTS: Collectively, feedback responses were received from 70 staff members. The majority of staff members felt supported and benefitted from the provisions provided. CONCLUSIONS: This evaluation showed that our healthcare system must continue to proactively implement and adapt staff support strategies to protect the mental well-being of healthcare professionals, both in the context of future health crises and in everyday practice. This study will assist and guide development and adaptations to health and psychological well-being support, ahead of future pandemics and to provide suitable support beyond the COVID-19 pandemic.