Caring for children with medical complexity at home: An integrative review.

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.

Relationships among psychological safety, the principles of high reliability, and safety reporting intentions in pediatric nursing.

PURPOSE: The purpose of this study was to explore relationships among psychological safety, the principles of high reliability, and safety reporting intentions in pediatric nursing. Patient safety events are underreported and costly. To promote reporting, many healthcare organizations have adopted the high reliability framework with strategies to foster team psychological safety. DESIGN: A web-based survey was distributed through the Society of Pediatric Nurses and the National Pediatric Nurse Scientist Collaborative. Data were collected from 244 pediatric nurses using a demographic form, Safety Organizing Scale, Team Psychological Safety Scale, and Intention to Report Safety Events Scale. Data were analyzed using logistic and linear regression. RESULTS: Psychological safety and perception of working in a high reliability organization (HRO) showed positive statistically significant relationships with reporting intentions (p = 0.034). Odds of nurses achieving highest reporting intention scores increased by a factor of 0.3 with each practice year. CONCLUSIONS: Psychological safety was found to be a predictor for intention to report safety events among pediatric nurses. Findings also demonstrated that nurses' perceptions of whether they worked in a high reliability setting also profoundly affect their attitude towards reporting. PRACTICE IMPLICATIONS: Focusing organizational efforts on cultivating psychological safety and embedding the high reliability framework into professional practice may significantly affect attitudes towards safety event reporting.

Parental Caregiver Expectations and Satisfaction Following Hip Reconstruction and Spinal Fusion in Children With Cerebral Palsy.

Children with severe (Gross Motor Function Classification System [GMFCS] IV-V) cerebral palsy (CP) exhibit profound physical and developmental impairments and require assistance for all activities of daily living. No curative treatments exist although surgical procedures to correct underlying hip and spine deformities can improve their quality of life. Despite the efficacy of these surgeries, little is known regarding parental caregivers' expectations specific to surgical outcomes and their satisfaction with surgical outcomes. The purpose was to explore parental caregiver expectations and satisfaction with hip and spine surgeries that their children with GMFCS IV-V CP underwent. Variations among preoperative expectations, changes in expectations over time, and the relationship of expectations on caregiver satisfaction were examined. A qualitative descriptive approach with conventional content analysis was utilized. Three preoperative caregiver expectation themes were identified: increasing functionality, increasing comfort, and maintaining health and averting crisis. These themes were still present at 5-year follow-up; however, more caregivers refocused their expectations from improving function to providing palliation. A clear relationship between expectations and caregiver satisfaction, however, was not identified. A deeper understanding surrounding caregiver expectation and satisfaction following surgical procedures is needed.

Parental caregivers' perception of their transition from hospital to home in children with cerebral palsy who have undergone orthopedic surgery.

PURPOSE: Evaluate parental perception of the quality of discharge teaching, readiness for discharge, and the impact of these on post discharge coping difficulty and resource utilization in children with cerebral palsy (CP) following surgery. DESIGN AND METHODS: Prospective cohort study conducted from September 2017-March 2021 at a pediatric academic medical center. Demographics were collected pre-operatively. Parents completed the Readiness for Hospital Discharge Scale (RHDS) and Quality of Discharge Teaching Scale (QDTS) within four hours of discharge. Four weeks post-discharge, parents completed the Post-discharge Coping Difficulty Scale (PDCDS). Utilization of healthcare resources were extracted from the electronic health record for 90 days post-operatively. Associations among demographics, RHDS, QDTS, PDCDS and resource utilization were assessed using general linear models; PDCDS's open-ended questions were analyzed using directed content analysis. RESULTS: 114 parental caregivers participated. Post discharge coping was significantly associated with additional resource utilization: length of stay (p = 0.046), readmissions (p = 0.001), emergency department visits (p = 0.001), clinic calls (p = 0.001) and unplanned clinic visits (p = 0.006). PDCDS was negatively correlated with the QDTS Quality of Teaching Delivered subscale (r = -0.32; p = 0.004) and three of five RHDS subscales: 1) Child's Personal Status (r = -0.24; p = 0.02); 2) Knowledge (r = -0.30; p = 0.005); and 3) Coping Ability (r = -0.39; p < 0.001). Four themes explicated parental coping difficulties. CONCLUSION: Parents experiencing coping difficulties were more likely to have difficulty managing their child's care needs at home and required additional health care resources. PRACTICE IMPLICATIONS: Recognizing that parents' readiness for discharge may not reflect their coping abilities post-discharge requiring nurses to coordinate pre- and post-discharge education and support services.

Military-to-civilian translation of battlefield innovations in operative trauma care.

BACKGROUND: Historic improvements in operative trauma care have been driven by war. It is unknown whether recent battlefield innovations stemming from conflicts in Iraq/Afghanistan will follow a similar trend. The objective of this study was to survey trauma medical directors (TMDs) at level 1-3 trauma centers across the United States and gauge the extent to which battlefield innovations have shaped civilian practice in 4 key domains of trauma care. METHODS: Domains were determined by the use of a modified Delphi method based on multiple consultations with an expert physician/surgeon panel: (1) damage control resuscitation (DCR), (2) tourniquet use, (3) use of hemostatic agents, and (4) prehospital interventions, including intraosseous catheter access and needle thoracostomy. A corresponding 47-item electronic anonymous survey was developed/pilot tested before dissemination to all identifiable TMD at level 1-3 trauma centers across the US. RESULTS: A total of 245 TMDs, representing nearly 40% of trauma centers in the United States, completed and returned the survey. More than half (n = 127; 51.8%) were verified by the American College of Surgeons. TMDs reported high civilian use of DCR: 95.1% of trauma centers had implemented massive transfusion protocols and the majority (67.7%) tended toward 1:1:1 packed red blood cell/fresh-frozen plasma/platelets ratios. For the other 3, mixed adoption corresponded to expressed concerns regarding the extent of concomitant civilian research to support military research and experience. In centers in which policies reflecting battlefield innovations were in use, previous military experience frequently was acknowledged. CONCLUSION: This national survey of TMDs suggests that military data supporting DCR has altered civilian practice. Perceived relevance in other domains was less clear. Civilian academic efforts are needed to further research and enhance understandings that foster improved trauma surgeon awareness of military-to-civilian translation.

A new locus for autosomal dominant cataract on chromosome 19: linkage analyses and screening of candidate genes.

PURPOSE: To map and identify the mutated gene for autosomal dominant cataract (ADC) in family ADC4. METHODS: Ophthalmic evaluations were performed on an American family with ADC and a panel of polymorphic DNA sequence-tagged site (STS) markers for known ADC loci and other genome-wide polymorphic markers were used to map the gene; two-point lod scores were calculated. Fine mapping was undertaken in the chromosomal regions of maximum lod scores, and candidate genes were sequenced. RESULTS: A four-generation American family with ADC was studied. The only phakic individual exhibited white and vacuolated opacities in the cortical region. This ADC locus mapped to several suggestive chromosomal regions. Assuming full penetrance, the highest calculated maximum lod score was 3.91 with D19S903 [corrected] On chromosome 12, we sequenced all exons and the exon-intron borders of the membrane intrinsic protein (MIP) gene. On chromosome 19, all exons and the exon-intron borders of genes for lens intrinsic membrane2 (LIM2), ferritin light chain (FTL), and the human homologue of the Drosophila sine oculis homeobox 5 (SIX5) were sequenced, and the 3' untranslated repeat region (UTR) of the dystrophy (DMPK) gene and both the 5' and 3' UTRs of the SIX5 genes were amplified; the promoter for LIM2 was sequenced. For these genes, the sequence matched that in the reference libraries, and the DMPK gene had a normal number of CTG repeats. CONCLUSIONS: The mutated gene in ADC4 probably represents a new, not yet identified locus on chromosome 19. In one phakic member, the cortical cataracts were punctate and vacuolated.

Novel single-base deletional mutation in major intrinsic protein (MIP) in autosomal dominant cataract.

PURPOSE: To further elucidate the cataract phenotype, and identify the gene and mutation for autosomal dominant cataract (ADC) in an American family of European descent (ADC2) by sequencing the major intrinsic protein gene (MIP), a candidate based on linkage to chromosome 12q13. DESIGN: Observational case series and laboratory experimental study. METHODS: We examined two at-risk individuals in ADC2. We PCR-amplified and sequenced all four exons and all intron-exon boundaries of the MIP gene from genomic and cloned DNA in affected members to confirm one variant as the putative mutation. RESULTS: We found a novel single deletion of nucleotide (nt) 3223 (within codon 235) in exon four, causing a frameshift that alters 41 of 45 subsequent amino acids and creates a premature stop codon. CONCLUSIONS: We identified a novel single base pair deletion in the MIP gene and conclude that it is a pathogenic sequence alteration.