Parental perspectives on the clinician's approach to serious illness communication: A qualitative study.

OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children's Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors. RESULTS: Eleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: "Approaches clinicians can use to lay the foundation for quality communication" including checking in, validation, aligning with hopes and a commitment to listening and being present; and "Approaches clinicians can use to aid the delivery of information" including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician's experience. SIGNIFICANCE OF RESULTS: This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents' needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.

Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service.

BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVES: (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. RESULTS: Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. CONCLUSION: 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.

Perioperative Care of Children with Severe Neurological Impairment and Neuromuscular Scoliosis-A Practical Pathway to Optimize Peri-Operative Health and Guide Decision Making.

Neuromuscular scoliosis is a common feature in children with severe neurological impairment (SNI), including those with severe cerebral palsy. Surgical correction of scoliosis is the mainstay of treatment. This group of patients also have associated medical complexity. The complication rates post-surgery are high, although, for many, they are worth the risk. There are currently no published practice guidelines or care pathways for children with SNI who are undergoing scoliosis corrective surgery. In response to the high uptake of this surgery, coupled with the expected complication rates, our hospital established a perioperative clinic. The purpose of this paper is to describe our perioperative approach. This clinic has developed into a service beyond perioperative care and, with the collaborative meeting, enables shared decision-making to identify the right candidate for surgery. The process involves surgical expertise, understanding the family and child at the centre, and optimisation of medical care pre- and post-surgery. In this paper, we describe the process in a step-by-step manner. We provide clinical vignettes, as well as the proformas that we use, and we highlight the benefits of the team-based process.

Pancreatic trauma in children.

PURPOSE: To document the demographics, mechanisms and outcome of traumatic pancreatitis in children at a single large tertiary referral centre in Australia. METHODS: We undertook a 10-year retrospective audit of children admitted to the Royal Children's Hospital, Melbourne, Australia with a hospital coded diagnosis which included pancreatic injury between 1993 and 2002. Data included patient demographics, source of admission, mechanism of injury, pancreatic complications, associated injuries, intensive care unit admission, results of any operative findings, results of any acute computed tomography and/or ultrasound imaging of pancreas, selected laboratory findings and length of stay. RESULTS: We identified two distinct groups of patients in the 91 documented cases of pancreatic trauma (median age 8.0 years, range 0.6-15.8 years; M:F 2.5:1.0): 59 had a history of abdominal trauma and elevated serum lipase but no CT or ultrasound evidence of pancreatic injury (Group A); 32 had a history of abdominal trauma, elevated serum lipase but also had CT scan and/or ultrasound evidence of pancreatic injury (Group B). Patients with "less severe" injury based on normal imaging had a lower initial lipase level [Group A, median 651 U/L (interquartile range 520-1,324) vs. Group B, 1,608 U/L (interquartile range 680-3,526); p = 0.005] and shorter admission time [Group A, 9.0 days (interquartile range 5.5-15.5) vs. Group B, 13.4 days (interquartile range 6.8-23.8); p = 0.04]. There were no differences with respect to mortality (Group A, 13.5% vs. Group B, 12.5%), but patients with evidence of injury on imaging were more likely to have surgical intervention (p = 0.0001). The single most important overall cause of pancreatic trauma was involvement in a motor vehicle accident as a passenger or pedestrian. However, in children with high-grade ductal injury, bicycle handlebar injuries were most common. Associated injuries were common in both groups. CONCLUSION: Significant pancreatic injury can occur in the absence of abnormality on medical imaging. Pancreatic trauma commonly occurs in the context of multiple injuries after motor vehicle accidents in children and bicycle handlebar injuries, especially in boys. Most children can be treated conservatively, with surgical intervention being limited to high-grade ductal injury.