Feeling stretched: parents’ narratives about challenges to resilience when their child has a tracheostomy

This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. This study employed a longitudinal qualitative design. Unstructured narrative interviews with 12 parents (from 9 families), whose child had a new tracheostomy, were undertaken at three time points over 12 months. Data were analysed using a socio-narratology method. Findings reveal the journey parents experienced, how their feelings changed, and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Stories told by parents early in their journey revealed emotional upheaval, negative emotions, stress, and shock. Due to medical need, parents had little or no choice for their child to have a tracheostomy. Once their child’s life was out of danger, parents started to reframe their experiences and beliefs. Resilience played a major part in how parents perceived and faced their situation, allowing them to deal with what came their way and to move forward with their lives. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points. Parents talked feeling stretched by the challenges they faced and reframing their perspectives about their child’s tracheostomy. Parents’ resilience and reframing is discussed in relation to the ABC-X model. This study identifies a theoretical model (ABC-X Model of Parental Resilience and Reframing) that explains this process of change. This results in transferable knowledge, useful for understanding and explaining the experience of other parents and families

Mafic magma feeds degassing unrest at Vulcano Island, Italy

The benign fuming activity of dormant volcanoes is punctuated by phases of escalating degassing activity that, on some occasions, ultimately prelude to eruption. However, understanding the drivers of such unrest is complicated by complex interplay between magmatic and hydrothermal processes. Some of the most comprehensively characterised degassing unrest have recently been observed at La Fossa cone on Vulcano Island, but whether or not these episodes involve new, volatile-rich ascending magma remains debated. Here, we use volcanic gas measurements, in combination with melt inclusion information, to propose that heightened sulphur dioxide flux during the intense fall 2021 La Fossa unrest is sourced by degassing of volatile-rich mafic magma. Calculations using a numerical model indicate observations are consistent with the unrest being triggered by the emplacement of ∼3·106 m3 of mafic magma at ∼4–5 km depth. Degassing of mafic magma is argued as a recurrent driver of unrest at dormant volcanoes worldwide

Our experience in developing and operating the Airway Intervention Registry for Recurrent Respiratory Papillomatosis (AIR-RRP): national data collection [version 2; peer review: 2 approved]

Recurrent respiratory papillomatosis (RRP) is characterised by benign wart-like growths in the respiratory tract caused by the human papillomavirus (HPV). These warts vary in size and grow quickly, causing voice changes and airway obstruction. Whilst the condition is rare, RRP is more common and aggressive in children. There is currently no curative treatment for HPV, therefore RRP is managed by maintaining a safe airway and a serviceable voice by repeated surgery to remove the growths. A lack of specific diagnostic codes prevents reliable case ascertainment of RRP from routine administrative databases such as Hospital Episode Statistics. In 2017 a cross-sectional survey identified  918 RRP patients in the UK, half of whom had received surgical intervention for RRP in the previous 12 months with 16 different interventions. Randomised controlled trials for RRP interventions are difficult due to the rarity of the disease, variation in severity and progression and non-standard care across the NHS. Consequently, there is a lack of definitive efficacy and safety evidence. The only national guidance for RRP interventions is “Radiofrequency cold ablation for respiratory papillomatosis” (NICE IPG434, 2017) which recommended further data collection due to lack of evidence. However, due to the wide variation in RRP management across the NHS, clinical opinion favoured that any data collection should include a comparison of safety and efficacy of all RRP interventions in order to advise which improved patient outcomes and quality of life. To address lack of evidence, and inform the future care of RRP patients, we developed a registry and used it to collect real-world data from patients receiving treatment for RRP in NHS hospitals across the UK. The purpose of this paper is to share lessons learned from this national data collection exercise to inform future clinical registry development

Recurrent croup is a good indicator of underlying paediatric airway issues: A 10-year retrospective cohort study of airway endoscopy

Objective Children with a history of recurrent croup alert the ENT clinician to the potential for underlying laryngotracheal pathology. There is equipoise about the likelihood of identifying any underlying structural issues or subglottic stenosis in those children who undergo airway assessment. Methods A retrospective cohort study in a tertiary UK paediatric hospital of a decade of children with recurrent croup who underwent a rigid laryngo-tracheo-bronchoscopy (airway endoscopy). Main Outcome(s) airway pathology seen on endoscopy and need for further airway surgery. Results In ten years, 139 children underwent airway endoscopy for recurrent croup. Operative findings were abnormal in 62 (45 %) cases. Twelve cases (9%) had subglottic stenosis. Although recurrent croup was more common in males (78% of cases), this was not found to predispose them to operative findings. Children with previous intubations had >2 times the risk of abnormal findings and children born prematurely (<37 wks) had a trend towards abnormal operative findings versus children with no airway findings in our cohort. Even in those patients with abnormal findings, none necessitated further airway surgery. Conclusions Surgeons and parents can be reassured that rigid airway endoscopy for children with recurrent croup demonstrated high diagnostic utility but will rarely lead to further surgical intervention. Greater understanding about recurrent croup may require consensus clarification about definitions of recurrent croup and/or a universal adoption of a minimum standard operative record or grading system after rigid endoscopy for recurrent croup

Developing a core outcome set for the health outcomes for children and adults with congenital oesophageal atresia and/or tracheo-oesophageal fistula: OCELOT task group study protocol

Introduction: Heterogeneity in reported outcomes of infants with oesophageal atresia (OA) with or without tracheo-oesophageal fistula (TOF) prevents effective data pooling. Core outcome sets (COS) have been developed for many conditions to standardise outcome reporting, facilitate meta-analysis and improve the relevance of research for patients and families. Our aim is to develop an internationally-agreed, comprehensive COS for OA-TOF, relevant from birth through to transition and adulthood. Methods and analysis: A long list of outcomes will be generated using (1) a systematic review of existing studies on OA-TOF and (2) qualitative research with children (patients), adults (patients) and families involving focus groups, semistructured interviews and self-reported outcome activity packs. A two-phase Delphi survey will then be completed by four key stakeholder groups: (1) patients (paediatric and adult); (2) families; (3) healthcare professionals; and (4) researchers. Phase I will include stakeholders individually rating the importance and relevance of each long-listed outcome using a 9-point Likert scale, with the option to suggest additional outcomes not already included. During phase II, stakeholders will review summarised results from phase I relative to their own initial score and then will be asked to rescore the outcome based on this information. Responses from phase II will be summarised using descriptive statistics and a predefined definition of consensus for inclusion or exclusion of outcomes. Following the Delphi process, stakeholder experts will be invited to review data at a consensus meeting and agree on a COS for OA-TOF. Ethics and dissemination: Ethical approval was sought through the Health Research Authority via the Integrated Research Application System, registration no. 297026. However, approval was deemed not to be required, so study sponsorship and oversight were provided by Alder Hey Children’s NHS Foundation Trust. The study has been prospectively registered with the COMET Initiative. The study will be published in an open access forum

Developing a core outcome set for the health outcomes for children and adults with congenital oesophageal atresia and/or tracheo-oesophageal fistula:OCELOT task group study protocol

Introduction Heterogeneity in reported outcomes of infants with oesophageal atresia (OA) with or without tracheo-oesophageal fistula (TOF) prevents effective data pooling. Core outcome sets (COS) have been developed for many conditions to standardise outcome reporting, facilitate meta-analysis and improve the relevance of research for patients and families. Our aim is to develop an internationally-agreed, comprehensive COS for OA-TOF, relevant from birth through to transition and adulthood. Methods and analysis A long list of outcomes will be generated using (1) a systematic review of existing studies on OA-TOF and (2) qualitative research with children (patients), adults (patients) and families involving focus groups, semistructured interviews and self-reported outcome activity packs. A two-phase Delphi survey will then be completed by four key stakeholder groups: (1) patients (paediatric and adult); (2) families; (3) healthcare professionals; and (4) researchers. Phase I will include stakeholders individually rating the importance and relevance of each long-listed outcome using a 9-point Likert scale, with the option to suggest additional outcomes not already included. During phase II, stakeholders will review summarised results from phase I relative to their own initial score and then will be asked to rescore the outcome based on this information. Responses from phase II will be summarised using descriptive statistics and a predefined definition of consensus for inclusion or exclusion of outcomes. Following the Delphi process, stakeholder experts will be invited to review data at a consensus meeting and agree on a COS for OA-TOF. Ethics and dissemination Ethical approval was sought through the Health Research Authority via the Integrated Research Application System, registration no. 297026. However, approval was deemed not to be required, so study sponsorship and oversight were provided by Alder Hey Children’s NHS Foundation Trust. The study has been prospectively registered with the COMET Initiative. The study will be published in an open access forum.</p

Paediatric tonsillectomy in england a cohort study of clinical practice and outcomes using Hospital Episode Statistics data (2008‐2019)

Objectives: To assess the safety of paediatric tonsillectomy procedures conducted in NHS hospitals in England between 2008 and 2019. Design: Retrospective observational cohort study using Hospital Episode Statistics (HES) data. Setting: Acute NHS trusts in England conducting paediatric tonsillectomy procedures Participants: Children (≤16 years old) undergoing bilateral tonsillectomy Main outcome measures: Number of tonsillectomies performed per year by procedural method. In‐hospital complications including return to theatre for arrest of haemorrhage. Readmission within 28 days, including those for pain, haemorrhage and surgical arrest of haemorrhage. Long‐term outcomes: all‐cause mortality, revision tonsillectomy. Results: A total of 318,453 paediatric tonsillectomies were performed from 2008 to 2019: 278,772 dissection (87.5%), 39,681 coblation (12.5%). The proportion of tonsillectomy performed using coblation increased from 7% in 2008/9 to 27% in 2018/9. Five patients died in hospital (including 4 due to respiratory complications). In‐hospital complications occurred in 4,202 children (1.3%), with the most frequent being haemorrhage. Within 28 days of tonsillectomy, 28,170 patients (8.8%) were readmitted and 7 deaths occurred. Readmission rates for haemorrhage and pain have increased since 2008. The proportion of children undergoing revision tonsillectomy procedures within 5 years following coblation tonsillectomy (1.4%) was approximately double that of dissection (0.6%). Conclusions: Clinical practice of paediatric tonsillectomy has changed in England over the past 11 years. The overall mortality rate associated with the procedure is 0.0037%. Differences in outcomes have been identified for different procedural methods. However, routine administrative data is limited in differentiating procedural detail (e.g. we are unable to differentiate intra or extra‐capsular techniques from current clinical coding of tonsillectomy procedures). Therefore prospective national data collection or more granular clinical coding is essential to capture relative outcomes of the different tonsillectomy methods and techniques being used in the NHS