PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses.

OBJECTIVES: To determine the measurement properties of PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS), a parent-reported measure of Quality of Care for seriously ill children across care settings and illness trajectories. STUDY DESIGN AND SETTING: Parents self-administered baseline and 2-week follow-up surveys online. Exploratory Factor Analysis was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients, and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care and Quality of Children's Palliative Care Instrument. RESULTS: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. Exploratory Factor Analysis grouped PRECIOUS into five scales: collaborative and goal-concordant care (12 items), caregiver support and respectful care (15 items), access to financial and medical resources (five items), reducing caregiving stressors (nine items), and hospitalization-specific processes (four items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. Intraclass correlation coefficients ranged from 0.72 to 0.86. Significant correlations with Measure of Processes of Care and Quality of Children's Palliative Care Instrument confirmed convergent validity. The original 56-item tool was reduced to 45 items. CONCLUSION: PRECIOUS demonstrates satisfactory measurement properties for assessing Quality of Care for seriously ill children.

A qualitative exploration of parental perspectives on quality of care for children with serious illnesses.

Introduction: Being 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. Methods: This 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. Results: 31 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. Discussion: The 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.

Palliative and Critical Care: Their Convergence in the Pediatric Intensive Care Unit.

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.

The Impact of Ethnic and Cultural Differences on Parental Satisfaction in the PICU.

OBJECTIVES: This study examined satisfaction of parents whose children were admitted to the PICU to identify priority areas for improvement. We hypothesized that differences exist in satisfaction of parents of different ethnicities. DESIGN: Prospective observational study. SETTING: PICU in a tertiary care pediatric hospital. PATIENTS: All English-literate parents whose child was admitted to our PICU between February 2014 and February 2015 were eligible after informed consent was obtained. Parents included in this study in previous admission(s) were excluded. INTERVENTION: Nil. MEASUREMENTS AND MAIN RESULTS: We adapted Empowerment of Parent in the Intensive Care Questionnaire, a validated questionnaire survey specific for measuring parental satisfaction in PICUs. This adapted survey consisted of 31 questions (based on a scale of 1-6) examining five domains as follows: information giving, care and cure, parental participation, organization, and professional attitude. Reliability of Empowerment of Parent in the Intensive Care Questionnaire in our population was analyzed using Cronbach's alpha. We used ordinal logistic regression, controlling for socioeconomic status and educational level, to examine differences in parental perceptions of various ethnicities. We obtained a total of 206 responses (36.5%) from 543 admissions. There were 116 (56%) emergency and 90 (44%) elective admissions. The proportion of respondents were Chinese (126 [61%]), Malay (32 [16%]), Indian (23 [11%]), and "Others" (25 [12%]). Cronbach's alpha for domains of information giving (α = 0.80), care and cure (α = 0.93), parental participation (α = 0.84), organization (α = 0.79), and professional attitude (α = 0.88) were good. In all five domains, our median PICU scores were 6 (interquartile range, 5-6). Compared to other ethnic groups, Malay parents did perceive that domains of "care and cure," "parental participation," and "professional attitude" were less satisfactory. CONCLUSIONS: Significant differences were found in satisfaction ratings between parents of different ethnicities. Further studies are needed to explore and determine reasons for these differences.

Sedation guidelines, protocols, and algorithms in PICUs: a systematic review.

OBJECTIVE: To evaluate the impact of sedation guidelines, protocols, and algorithms on clinical outcomes in PICUs. DATA SOURCES: CINAHL, Medline, EMBASE, Web of Science, and the Cochrane Database of Systematic Reviews, STUDY SELECTION: : English-only publications from 1966 to December 2013, which included keywords "sedation," "guideline," "algorithm," "protocol," and "pediatric intensive care." We included all primary studies involving critically ill children on sedation guidelines, protocols, and algorithms and excluded those which focused mainly on diagnostic or procedural purposes. DATA EXTRACTION: Two authors independently screened each article for inclusion. A standardized data extraction sheet was used to extract data from all included studies. DATA SYNTHESIS: Among the 1,283 citations yielded from our search strategy, six observational studies were included in the final review. Due to the heterogeneity of the studies included, clinical outcomes were not combined into a meta-analysis. A descriptive account of the studies was formulated to characterize all included studies. The three outcomes of interest were clinical outcomes, patients' comfort and safety, and sedative use. We found an association between the use of sedation guidelines, protocols, and algorithms and reduced PICU length of stay, frequency of unplanned extubation, prevalence of patients experiencing drug withdrawal, total sedation duration, and doses. Overall, the quality of identified studies is low. CONCLUSIONS: 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.