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

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.

The Impact of the Covid-19 Pandemic on Cleft Lip and Palate Service Delivery for New Families in the United Kingdom: Medical and Community Service Provider Perspectives.

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.

Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom.

OBJECTIVES: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence base for psychosocial intervention remains limited. Specialist clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to identify common psychosocial challenges and potential risk and/or protective factors for psychosocial distress from the perspective of specialist clinicians and to establish the types of interventions currently being delivered in practice. DESIGN: Individual interviews with 17 clinical nurse specialists and 19 specialist clinical psychologists, representing all 16 UK CL/P surgical sites. Data were analyzed using inductive content analysis. RESULTS: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the life span. Risk factors were predominantly contextual in nature, while protective factors appeared amenable to intervention. Participants drew upon a range of therapeutic models and approaches to guide formulation and intervention, while acknowledging the lack of evidence to support these approaches in CL/P populations specifically. CONCLUSIONS: Findings have important implications for the way in which psychosocial support for CL/P and related conditions is delivered and evaluated. A framework for the standardized assessment of holistic individual and familial well-being is proposed. Suggestions for increasing the evidence base for specific psychosocial interventions are made, including enhanced family functioning; social, emotional, and appearance concerns; treatment decision-making; and screening for psychosocial and developmental issues.

Study protocol for randomised clinical trial comparing the effectiveness of side-lying sleep positioning to back-lying at reducing oxygen desaturation resulting from obstructive sleep apnoea in infants with cleft palate (SLUMBRS2).

INTRODUCTION: The craniofacial abnormalities found in infants with cleft palate (CP) decrease their airway patency and increase their risk of obstructive sleep apnoea (OSA). We hypothesise that optimising sleep position in infants with CP may improve airway patency and offer a 'low-cost, high-impact' intervention to prevent the negative impacts of OSA. Because cleft centres give inconsistent advice about sleep position: some recommend back-lying and others side-lying, we will compare these in a randomised controlled trial. METHODS AND ANALYSIS: The aim is to determine the clinical effectiveness of side-lying as compared with back-lying sleep positioning in terms of reducing oxygen desaturation resulting from OSA in 244 infants aged 3-5 weeks of age, diagnosed with an isolated CP in/by UK cleft centres. Primary outcome is the 4% Oxygen Desaturation Index measured using pulse oximetry during sleep. RESEARCH PLAN: 1. Multicentre randomised controlled trial of side-lying compared with back-lying sleep positioning in reducing oxygen desaturation resulting from OSA in infants with CP at one month of age. 2. Internal pilot questionnaire-based study to support parents and clinicians regarding study participation, seeking to identify and address any barriers to recruitment. Monitoring data from the internal pilot will be used in the final analysis. 3. Co-development of new UK recommendations with Cleft Lip and Palate Association (CLAPA) regarding sleep position for infants with CP. ETHICS AND DISSEMINATION: The study protocol has received the favourable opinion of the West Midlands-South Birmingham Research Ethics Committee. Study results will be published on affiliated webpages and in peer-reviewed publications and conference contributions. TRIAL REGISTRATION NUMBER: NCT04478201.