Tools used to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions: A scoping review.

AIM: To identify and describe assessment tools used to measure the impact of comorbidities on postoperative outcomes in children with complex chronic conditions (CCC). METHOD: This was a scoping review using five electronic databases. The search was conducted in March 2022 by a medical librarian. There were no date or language restrictions. Included studies were full-text articles published in peer-reviewed journals that described a tool used to measure the impact of comorbidities in children with CCC to assess postoperative outcomes. A standardized data charting tool was used. RESULTS: A total of 2157 articles were retrieved. Five studies reporting on six comorbidity measures met inclusion criteria. All were cohort studies and were secondary analyses of data from an administrative database (n = 4) or a patient registry (n = 1). Sample sizes ranged from 645 to 25 747 participants. One paper described the assessment of reliability. Only one form of validity - predictive validity - was assessed in three papers for five measures. INTERPRETATION: Findings from this scoping review revealed a paucity of comorbidity assessment tools validated for use with children with CCC; significant conceptual and measurement challenges exist in the current scientific literature.

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.

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.

De-adopting low-value care: The missing step in evidence-based practice?

BACKGROUND: Low-value care provides little or no benefit to pediatric patients, has the potential to cause harm, waste healthcare resources, and increase healthcare costs. Nursing has a responsibility to identify and de-adopt low-value practices to help promote quality care. PURPOSE: 1) Describe the process of identifying and de-adopting low-value clinical practices guided by a conceptual model using a case study approach. 2) Identify facilitators and barriers to de-adoption practices, including levels of stakeholder engagement, organizational structures, and the quality of available scientific and non-scientific evidence. METHODOLOGY: An evidence-based practice (EBP) project investigating the efficacy of antihistamines in decreasing infusion reactions to infliximab identified a low-value practice within a pediatric infusion center. The Synthesis Model for the Process of De-adoption was then applied to guide the de-adoption of this low-value practice. Case study analysis highlighted facilitators and barriers to de-adoption efforts. CONCLUSIONS: The process for de-adopting care is an essential component of EBP and, as such, should be explicated through robust, standardized EBP processes and education. PRACTICE IMPLICATIONS: Nurses are best positioned to identify, assess and prioritize low-value practices and facilitate the de-adoption of low-value practice that impact pediatric patients and families. Models to support de-adoption and a focus on site-specific practices including a prepared nursing workforce, continuous evaluation of care processes and the use of resources to assess for contextual determinants facilitates success and sustainability of this essential EBP approach.

Assessing Diabetes Distress in Emerging Adults With Type 1 Diabetes: Development and Validation of the Problem Areas in Diabetes-Emerging Adult Version.

OBJECTIVES: Emerging adults (18 to 30 years of age) with type 1 diabetes experience suboptimal glycemic and psychological outcomes compared with other groups. The emotional burden of the unending self-care needs of diabetes management appears to be related to these poor health outcomes. However, there is no validated measure of this emotional burden in the developmental context of emerging adulthood. The primary aim of this study was to examine the psychometric properties of a new measure of diabetes distress in emerging adults with type 1 diabetes in the United States. METHODS: In this cross-sectional study, emerging adults with type 1 diabetes completed an online survey, including measures of diabetes distress, depressive symptomology and the newly developed measure, the Problem Areas in Diabetes-Emerging Adult version (PAID-EA). Participants also answered demographic and clinical outcomes questions. Internal consistency, reliability, construct validity and the underlying factor structure of the PAID-EA were assessed. RESULTS: Participants (N=287, 78% women) had a median age of 24 years, 43% were full-time students, 78% wore an insulin pump and 90% used a continuous glucose monitor. Mean self-reported glycated hemoglobin was 7.1%±1.2%. The PAID-EA demonstrated good internal consistency and reliability (Cronbach alpha=0.89), was composed of 1 component accounting for 29% of the observed variance and demonstrated construct validity as it was significantly correlated with known measures of similar constructs and with glycated hemoglobin levels (ρ=0.20, p=0.001). CONCLUSIONS: The PAID-EA holds promise as a reliable and valid measure of diabetes distress in emerging adults.

Is There a Relationship Between Youth Bullying and Internet Addiction? An Integrative Review.

Youth bullying is a global public health problem; Internet addiction is on the rise globally among youths. Because the linkage between these behaviors has not been clearly explicated, this integrative review evaluated the relevant empirical evidence. A search of five electronic databases identified 2,761 original citations published between January 2000 and May 2019. After further abstract screening and detailed evaluation of 262 full-text articles, the final sample consisted of 14 prospective descriptive studies representing 10 countries. Review results clearly established that the relationship between bullying and Internet addiction is firmly supported; less is known as to the contribution of gender, age, and other demographic variables, their impact on health outcomes, problematic behaviors, and the role of parental mediation. Inconsistent definitions and instrumentation and lack of sophisticated study designs limited the synthesis of findings. Future research is needed to explicate these relationships, so data-driven interventions can be developed.

Telemedicine and Health Equity During COVID-19 in Pediatric Gastroenterology.

INTRODUCTION: Telehealth (TH) services rapidly expanded during the COVID-19 pandemic. This rapid deployment precluded the opportunity for initial planning of implementation strategies. The purpose of the quality improvement project was to understand the needs of nurse practitioners and examine TH procedures and interventions designed to promote high-quality, equitable health care for pediatric patients with gastrointestinal concerns. METHOD: The Plan-Do-Study-Act model was used. Survey data from providers and families were collected and analyzed. They were further illuminated through iterative dialog across the research team to determine the quality and efficiency of TH. RESULTS: A toolkit of strategies for promoting the quality and efficiency of TH was created according to the three domains of health equity: availability, accessibility, and acceptability. DISCUSSION: TH will be used in the postpandemic era. Institutions need to implement evidence-based strategies that ensure health equity across TH platforms to ensure excellent patient care.

Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy.

AIM: To evaluate the effect of hip reconstruction or spinal fusion on health-related quality of life (HRQoL) in non-ambulatory children with spastic cerebral palsy (CP) and caregiver burden. METHOD: This was a prospective, longitudinal study of changes in HRQoL and caregiver burden over the 5 years after surgical correction of hip instability or scoliosis in children with bilateral spastic CP classified in Gross Motor Function Classification levels IV or V. Serial parent proxy measures of HRQoL and caregiver burden were obtained before and 6 weeks, and 3, 6, 9, 12, 24, and 60 months after surgery using the Caregiver Priorities and Child Health Index of Life with Disabilities and the Assessment of Caregiver Experience with Neuromuscular Disease. Scores 5 years or more after surgery were compared to pre-surgery scores using paired Student's t-tests. Serial outcome trajectories were estimated by linear mixed modeling. RESULTS: Of 69 participants (40 males, 29 females; mean age 11y 6mo, SD 4y 1mo, range 3y 10mo-20y 7mo), 43 had hip reconstruction and 26 had spinal fusion. Clinically significant improvements in HRQoL were detected (average increase 7.6 points) 5 years or more postoperatively, with hip reconstruction providing greater benefit. Domains improved by surgery included positioning, transferring/mobility, comfort/emotions, and health. Caregiver burden did not change as these children remain maximally dependent. INTERPRETATION: Surgical treatment of hip and spine deformity improves HRQoL, especially for painful hip instability, but does not change caregiver burden.

Direct care nurses' perceptions of their roles in clinical research: An integrated review of the literature.

PURPOSE: To review the extant literature relevant to perceptions by direct care nurses toward clinical research endeavors. DESIGN: An integrative review guided by the socioecological model was conducted. METHODS: Five databases were searched to identify relevant peer-reviewed articles; there was no limitation on publication date. FINDINGS: The final sample (N = 9) was systematically appraised. Numerous barriers to direct care nurses' ability to perform study activities on clinical research trials were encountered at all levels: (1) personal-comprehension, education, and training; (2) interpersonal-communication issues within or from the study team, failure to advocate for the patient; (3) organizational-lack of leadership support, knowledge, and time; and (4) community-insufficient guidance and oversight by research-governing bodies. CONCLUSIONS: Direct care nurses report numerous barriers to completing protocol-administered activities for their patients participating in clinical research. A dearth of robust research exists in describing the reasons for, or persistence of, barriers faced by direct care nurses to assisting with research, and there have been little to no interventions to address them. CLINICAL RELEVANCE: As translational research evolves and becomes more complex, there is the need to ensure both the care of clinical research participants and the integrity of the research. Direct care nurses are critical to this endeavor, and potential barriers they face may have significant ramifications for the research enterprise. Recognition of these barriers and eventual interventions designed to address them are needed.

Determining factors that influence parents' perceptions of telehealth provided in a pediatric gastroenterological practice: A quality improvement project.

BACKGROUND: In response to the COVID-19 pandemic, local and institutional guidelines restricted non-emergent, in-person visits in outpatient specialty clinics. Nurse practitioners (NPs) in pediatric gastroenterology clinics immediately shifted their practice to telehealth (TH). LOCAL PROBLEM: The shift to TH necessitated a change in practice. This quality improvement project was designed to define factors influencing family's perceptions of TH and secure feedback on the TH experience. TH is remaining an option for accessing care even as restrictions are being lifted. Feedback is necessary to ensure that quality of care and high patient satisfaction are maintained in a virtual environment. METHODS: The Unified Theory of Acceptance and Use of Technology was used to frame the project. Surveys were collected from NPs related to services provided and complexities of each encounter. Post-visit surveys were conducted with families to assess their perceptions of the visit. Findings were discussed to identify and address gaps in service. RESULTS: Parent/family surveys were consistent with NP feedback. Results indicated that parents were satisfied with care provided via TH, but that these visits were limited by incomplete assessments, lacked the intimacy of in-person encounters and were often difficult to access due to technological issues. CONCLUSIONS: It is anticipated that TH will be used in the post pandemic era to provide routine and non-emergent acute care. Institutions and providers need to consider factors influencing the patient experience learned during the pandemic and implement evidenced-based strategies that ensure quality care that meets patients' needs.

Engaging Social Media Influencers to Recruit Hard-to-Reach Populations.

BACKGROUND: Though clinical researchers have begun to use social media platforms to recruit participants, social media influencers are innovative community connectors to further expand recruitment reach, especially in hard-to-reach populations. OBJECTIVES: The purpose of this methods article is to provide a step-by-step guide for engaging social media influencers for virtual participant recruitment. METHODS: There are multiple steps for researchers to follow, including preplanning, institutional review board approval, engaging with influencers, the pitch, the post, and results dissemination. DISCUSSION: Engaging social media influencers to recruit for clinical research demonstrates great potential to increase access to hard-to-reach populations. Several methodological considerations remain, and this article shares both opportunities and challenges to guide researchers in this technique.

DNP scholarly projects: Unintended consequences for academic-practice partnerships.

With the rapid proliferation of Doctor of Nursing Practice (DNP) programs, academic-practice partnerships are critical in the implementation of rigorous and valuable scholarly projects. However, the failure to develop meaningful partnerships can have unintended consequences, particularly when students and practice sites do not have the preparation and support to navigate these partnerships. Four case studies are presented that explore the issues of preserving autonomy, practicing stewardship, imposing unfair burden and maintaining project fidelity. Best practices are presented to promote equitable collaboration and a mutually beneficial experience. Universities must have the resources required to generate expert clinicians able to translate research into practice and support effective academic-practice partnerships.

Parents' Perceptions of Emerging Adults With Congenital Heart Disease: An Integrative Review of Qualitative Studies.

BACKGROUND: As the primary caregivers for children with congenital heart disease (CHD), parents' perceptions are important for emerging adults to achieve independence. This integrative review of qualitative studies aimed to describe parents' perceptions of emerging adults with CHD. METHOD: Seven electronic databases were searched. Data extraction and quality assessment were performed. A meta-synthesis was conducted to inductively develop essential themes from five included studies. RESULTS: Three essential themes encompassing the parents' perspective of emerging adults with CHD were: (1) concerns about emerging adults' ability to be independent; (2) concerns about emerging adults' future; and (3) impact of disease on family. The themes depicted parents' concerns and worries about their children's ability to successfully achieve independence, especially in disease self-management and life goals. DISCUSSION: This review highlights parents' concerns about their emerging adult children's independence. Understanding these concerns allows for developing interventions to facilitate emerging adults' independence and ease parents' worries.

Pediatric Suicide Screening: A Review of the Evidence.

BACKGROUND: Suicide rates are increasing for youths and suicide is the second leading cause of death for 10-24 year olds. This evidence-based practice project critically reviews literature regarding the effectiveness of pediatric suicide screening. METHODS: A literature search was guided by the following question: In pediatric patients, does suicide screening at every health encounter compared to an annual screen increase clinician identification of patients at-risk. Ten articles met inclusion criteria and were critically appraised and synthesized. FINDINGS: Youths had high rates of suicidal ideation (SI), anxiety, and depression. Pediatric universal suicide screening identified SI in youths with both psychiatric and non-psychiatric medical complaints. Patients with chronic health conditions reported higher rates of mental health symptoms and SI. A specific suicide screening instrument should be used as general mental health screens likely miss youths at-risk for SI. The Ask Suicide-Screening Questions tool is an easy to use and highly sensitive instrument for detecting suicide risk in youths. DISCUSSION: Many youths that screen positive for SI do not have known mental health concerns and would have been missed if not asked directly. Universal screening for SI identifies at-risk youth and allows nurses and other providers to intervene. The need for universal screening across pediatric health care settings using brief, validated screening tools is paramount. APPLICATION TO PRACTICE: Nurses working in pediatric settings should champion universal screening for SI. Unit-based quality improvement projects using the Plan-Do-Study-Act change cycle provides a model for instituting universal screening for SI.

Addressing Bullying and Lateral Violence in the Workplace: A Quality Improvement Initiative.

BACKGROUND: Bullying and lateral violence are pervasive in the nursing workforce and have profound psychosocial, physical, safety, and financial consequences for nurses, their patients, and the overall health care organization. PROBLEM: Unit-based nursing leaders may be aware of bullying and lateral violence but be unsure of the best approaches to address it. APPROACH: An iterative, multimodal quality improvement initiative was crafted on the basis of the available evidence and principles of transformational, adult learning. Six units were designed to foster didactic, affective, and psychomotor learning specific to bullying and lateral violence and their prevention. Each unit consisted of formal lecture content, practice exercises, and reflection. OUTCOMES: This quality improvement project was well received by participants; a unit-based action plan resulted. Project materials are being reworked and new evidence integrated for deployment across the department. CONCLUSIONS: This initiative has demonstrated the necessary properties and is appropriate for adoption by other nursing units.

The Efficacy of Antihistamines in Preventing Reactions to Infliximab in Patients With Crohn Disease/Ulcerative Colitis: A Review of the Evidence.

Inflammatory bowel diseases, including Crohn disease and ulcerative colitis, are most often diagnosed during adolescence and young adulthood, with a rising incidence in pediatric populations. Infliximab is an effective treatment option for Crohn disease and ulcerative colitis. The most common adverse event with infliximab is an infusion reaction. Patients are often treated prophylactically with combinations of acetaminophen, intravenous steroid, and an antihistamine to prevent an infusion reaction. There is a high degree of practice variation regarding pretreatment for infliximab infusions, the efficacy of pretreatment with an antihistamine is unproven in preventing infusion-related reactions, and there is no national clinical standard. Unnecessary pretreatment in adolescence and young adulthood may be harmful, as this is a time to focus on developing self-care management skills. Antihistamine side effects including somnolence and dizziness may adversely affect adolescents and/or young adults' ability to complete schoolwork, drive, and transition toward autonomous management of their chronic illness. This report presents the findings of an evidence-based practice project reviewing the efficacy of pretreatment with an antihistamine in patients with Crohn disease and ulcerative colitis receiving infliximab. Practice implications are discussed.