Despite widespread recommendation for the use of sedation guidelines, protocols, and algorithms in critically ill children, our systematic review revealed a paucity of high-quality evidence to guide this practice. More robust studies are urgently needed for this important aspect of PICU care.
Significant differences were found in satisfaction ratings between parents of different ethnicities. Further studies are needed to explore and determine reasons for these differences.
Palliative care (PC) is an integral component of optimal critical care (CC) practice for pediatric patients facing life-threatening illness. PC acts as an additional resource for patients and families as they navigate through critical illness. Although PC encompasses end of life care, it is most effective when integrated early alongside disease-directed and curative therapies. PC primarily focuses on improving quality of life for patients and families by anticipating, preventing and treating suffering throughout the continuum of illness. This includes addressing symptom distress and facilitating communication. Effective communication is vital to elicit value-based goals of care, and to guide parents through patient-focused and potentially difficult decision-making process which includes advanced care planning. A multidisciplinary approach is most favorable when providing support to both patient and family, whether it is from the psychosocial, practical, emotional, spiritual or cultural aspects. PC also ensures coordination and continuity of care across different care settings. Support for family carries on after death with grief and bereavement support. This narrative review aims to appraise the current evidence of integration of PC into pediatric CC and its impact on patient- and family-centered outcomes. We will also summarize the impact of integration of good PC into pediatric CC, including effective communication with families, advanced care planning, withholding or withdrawal of life sustaining measures and bereavement support. Finally, we will provide a framework on how best to integrate PC in PICU. These findings will provide insights on how PC can improve the quality of care of a critically ill child.
BackgroundParenteral nutrition (PN) is the mainstay of treatment in children with chronic intestinal failure. We review our experience in home parenteral nutrition and describe outcomes of long term home PN therapy.MethodsA retrospective cohort study was conducted by retrieving clinical records of patients with primary digestive diseases who were on home parenteral nutrition between July 2014 to July 2016.Results13 patients (4 boys, 9 girls) received PN for more than 2 months. Out of these, 8 patients required PN therapy for more than 6 months. Main indications for long-term PN included chronic intestinal pseudo-obstruction syndrome (CIPOS, 38%), short bowel syndrome (SBS, 54%) and inflammatory bowel disease (IBD, 8%). Median age for initiation of PN was 1.7 years. Median duration of PN therapy was 1.4 years. 6 patients (46%), all with SBS, were successfully weaned off PN.One of the major complications of long term PN was central line-associated bloodstream infection (CLABSI). Incidence of CLABSI was 5.3 per 1000 catheter days. After implementation of use of Taurolidine-citrate solution (TCS), a catheter-lock solution, incidence of CLABSI improved with a pre and post-TCS CLABSI rate ratio of 0.17 (95% CI 0.04–0.52, p<0.001). There was no biochemical evidence of intestinal failure associated liver disease (IFALD) in all patients. This may be, in part, related to our practice of using SMOF lipid for patients requiring more than 2 weeks of PN. Only 2 patients exhibited lower final BMI Z-scores of < −2. There was a 100% survival in this study group.ConclusionsPN is a safe and crucial modality of treatment in children with chronic intestinal failure. SBS forms the largest subgroup in our paediatric intestinal failure population. However, patients in this subgroup were also more likely to be weaned off PN. Incidence of CLABSI can be effectively controlled with introduction of TCS. Incidence of IFALD can also be reduced with SMOF and other new lipids.
IntroductionBeing responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care.MethodsThis qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework.Results31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the “PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)” framework which summarizes elements contributing to the parental perception of quality of care.DiscussionThe identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.
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