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.

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.

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.

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.

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.

How Do the Challenges of Emerging Adulthood Inform our Understanding of Diabetes Distress? An Integrative Review.

PURPOSE OF REVIEW: Emerging adulthood (ages 18-29) presents many emotional, social, and developmental challenges that can contribute to an increased sense of burden when managing type 1 diabetes (T1D). Diabetes distress (DD) is the concept that captures the emotional burden, frustrations, and worries resulting from living with T1D. This integrative review sets out to examine the impact of developmental context by answering this question: How do the challenges of emerging adulthood inform our understanding of DD? RECENT FINDINGS: DD is highly prevalent in emerging adults and occurs at higher rates than in other age groups. Qualitative studies reveal that DD is embedded within the developmental challenges specific to living with T1D during this stage. Quantitative studies reveal the prevalence and correlates of DD in this age group, and qualitative studies augment these findings by capturing the scope and complexity of the emotional burden of living with T1D as an emerging adult.

Diabetes Distress in Emerging Adults: Refining the Problem Areas in Diabetes-Emerging Adult Version using Rasch Analysis.

The emotional burden of living with Type 1 diabetes (T1D) is experienced differently in each life stage. Thus the measurement of diabetes distress (DD) warrants tailoring to particular developmental stages, specifically emerging adulthood (ages 18-30). The new measure entitled the Problem Areas in Diabetes- Emerging Adult version (PAID-EA) is intended to be a developmentally-embedded measure of DD for use in clinical and research settings. The goal of the present study was to use Rasch psychometric analysis to reduce and refine the PAID-EA. Emerging adults with T1D (n = 194) completed the 30-item online survey. Evaluation of response category functioning, measurement precision, redundancy, unidimensionality and targeting guided item reduction through iterative revisions. The reduced and refined PAID-EA consists of 25 items and shows promising utility for clinicians and researchers.

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.

Identifying Bullied Youth: Re-engineering the Child-Adolescent Bullying Scale into a Brief Screen.

While youth bullying is a critical public health problem, standardized exposure screening is not routinely practiced. The Child-Adolescent Bullying Scale, (CABS), a psychometrically robust 22-item tool, was designed and evaluated for this purpose using classical test theory. The goals of the present study were to examine and optimize the measurement properties of the CABS using a Rasch psychometric analysis to develop a brief screening tool appropriate for clinical use. A methodologic design and the Rasch rating scale model were employed. Three hundred and fifty-two youths from two clinical sites participated. Rasch-based analyses included evaluation of response category functioning, measurement precision, dimensionality, targeting, differential item functioning and guidance in item reduction. After iterative revisions, the resulting screening instrument consists of 9 items. Cut-scores and interpretive guidance are provided to aid clinical identification of bullying-related risk. Findings suggest the CABS-9 holds promise as a useful screening tool for identifying bullying exposure.

Item Generation and Content Validity of the Child-Adolescent Bullying Scale.

BACKGROUND: Healthcare providers do not uniformly screen young patients for exposure to bullying, and no screening instruments have been developed for widespread use in clinical settings. OBJECTIVES: The objectives of this study were to (a) generate scale items by identifying and eliciting concepts relevant to youths with potential exposure to bullying as well as to professionals who work with bullied youths and (b) assess the content validity of the new Child-Adolescent Bullying Scale (CABS) instrument. METHODS: A mixed-methods design was used to develop an initial pool of 52 items. The study was conducted in four phases: (I) comprehensive review of the existing literature; (II) concept elicitation through the conduct of focus groups with school-age youths and professionals who work with bullied youths; (III) concept selection and item construction; and (IV) content validation assessment of relevance, clarity, and dimension of each item by a panel of 30 international bullying and measurement experts through completion of an online survey. RESULTS: An initial pool of 52 potential items was developed during Phases I-III of the study. During Phase IV, item- and scale-level content validity indices were calculated and were used to refine the item pool. These strategies resulted in a new, 22-item tool, with scale-level content validity indices of .954 for clarity and .920 for representativeness. DISCUSSION: Evaluation of the CABS tool with a sample of youths drawn from healthcare settings will be necessary to assess the performance of the CABS items, further evaluate its psychometric properties, and further refine the tool.

Theory and Theorizing in Nursing Science: Commentary from the Nursing Research Special Issue Editorial Team.

BACKGROUND: Articles from three landmark symposia on theory for nursing-published in Nursing Research in 1968-1969-served as a key underpinning for the development of nursing as an academic discipline. The current special issue on Theory and Theorizing in Nursing Science celebrates the 50th anniversary of publication of these seminal works in nursing theory. OBJECTIVE: The purpose of this commentary is to consider the future of nursing theory development in light of articles published in the anniversary issue. APPROACH: The Editorial Team for the special issue identified core questions about continued nursing theory development, as related to the nursing metaparadigm, practice theory, big data, and doctoral education. Using a dialogue format, the editors discussed these core questions. DISCUSSION: The classic nursing metaparadigm (health, person, environment, nursing) was viewed as a continuing unifying element for the discipline but is in need of revision in today's scientific and practice climates. Practice theory and precision healthcare jointly arise from an emphasis on individualization. Big data and the methods of e-science are challenging the assumptions on which nursing theory development was originally based. Doctoral education for nursing scholarship requires changes to ensure that tomorrow's scholars are prepared to steward the discipline by advancing (not reifying) past approaches to nursing theory. CONCLUSION: Ongoing reexamination of theory is needed to clarify the domain of nursing, guide nursing science and practice, and direct and communicate the unique and essential contributions of nursing science to the broader health research effort and of nursing to healthcare.

The Child Adolescent Bullying Scale (CABS): Psychometric evaluation of a new measure.

While youth bullying is a significant public health problem, healthcare providers have been limited in their ability to identify bullied youths due to the lack of a reliable, and valid instrument appropriate for use in clinical settings. We conducted a multisite study to evaluate the psychometric properties of a new 22-item instrument for assessing youths' experiences of being bullied, the Child Adolescent Bullying Scale (CABS). The 20 items summed to produce the measure's score were evaluated here. Diagnostic performance was assessed through evaluation of sensitivity, specificity, predictive values, and area under receiver operating characteristic (AUROC) curve. A sample of 352 youths from diverse racial, ethnic, and geographic backgrounds (188 female, 159 male, 5 transgender, sample mean age 13.5 years) were recruited from two clinical sites. Participants completed the CABS and existing youth bullying measures. Analyses grounded in classical test theory, including assessments of reliability and validity, item analyses, and principal components analysis, were conducted. The diagnostic performance and test characteristics of the CABS were also evaluated. The CABS is comprised of one component, accounting for 67% of observed variance. Analyses established evidence of internal consistency reliability (Cronbach's α = 0.97), construct and convergent validity. Sensitivity was 84%, specificity was 65%, and the AUROC curve was 0.74 (95% CI: 0.69-0.80). Findings suggest that the CABS holds promise as a reliable, valid tool for healthcare provider use in screening for bullying exposure in the clinical setting.

Cyberbullying and Social Media: Information and Interventions for School Nurses Working With Victims, Students, and Families.

Social media has become an increasingly prevalent fixture in youths' lives, with over 90% of teenagers reporting daily usage. These online sites and applications have provided many positive opportunities for youths to connect and share ideas with others; however, social media has also become a major platform for cyberbullying. Victims often experience negative health outcomes directly related to cyberbullying. For this reason, it is critical that third parties, such as school nurses, are well versed in social media and the warning signs of those being victimized by cyberbullying. Therefore, this integrative review examines school nurses' knowledge of cyberbullying and social media and identifies the implications for school nursing practice regarding prevention and intervention processes.

Impact of Non-medical Out-of-pocket Expenses on Families of Children With Cerebral Palsy Following Orthopaedic Surgery.

PURPOSE: Limited research has been conducted on the non-medical out-of-pocket expenses (NOOPEs) incurred by families of children with chronic health conditions. The study objectives were to: 1) calculate the estimated NOOPEs incurred by families during hospitalization of their child, 2) identify predictors of high NOOPEs, and 3) assess the impact of the child's chronic health condition on the family's finances. DESIGN AND METHODS: Prospective observational study. Parents were included if their child was 3-20years old, had severe, non-ambulatory cerebral palsy (CP), and scheduled for hip or spine surgery. Parents reported all NOOPEs incurred during their child's hospitalization using the Family Expense Diary. Families completed the subscales of the Impact on Family Scale and the Assessment of Caregivers Experience with Neuromuscular Disease. Descriptive and univariate and multiple hierarchical regression models were used in the analysis. RESULTS: Fifty two parents participated. The total NOOPEs ranged from $193.00 to $7192.71 (M=$2001.92) per hospitalization representing an average of 4% of the family's annual earned income. Caregiver age (F=8.393, p<0.001), income (F=7.535, p<0.001), and distance traveled to the hospital (F=4.497, p=0.039) were significant predictors of high NOOPEs. The subscale scores indicated that a child's chronic health condition had a significant impact on family finances. CONCLUSIONS AND PRACTICE IMPLICATIONS: Hospitalization is associated with numerous NOOPEs that create additional financial demands for families caring for a child with severe CP. NOOPEs should be addressed when preparing families for their children's planned hospital admissions, especially those families of CSHCN who experience significant financial impacts secondary to their children's care.

Technology-enhanced focus groups as a component of instrument development.

Background Bullying is a critical public health problem and a screening tool for use in healthcare is needed. Focus groups are a common tool for generating qualitative data when developing an instrument and evidence suggests that technology-enhanced focus groups can be effective in simultaneously engaging participants from diverse settings. Aim To examine the use of technology-enhanced focus groups in generating an item pool to develop a youth-bullying screening tool. Discussion The authors explore methodological and ethical issues related to conducting technology-enhanced focus groups, drawing on their experience in developing a youth-bullying measure. They conducted qualitative focus groups with professionals from the front lines of bullying response and intervention. They describe the experience of conducting technology-enhanced focus group sessions, focusing on the methodological and ethical issues that researchers engaging in similar work may encounter. Challenges associated with this methodology include establishing rapport among participants, privacy concerns and limited non-verbal communication. Conclusion The use of technology-enhanced focus groups can be valuable in obtaining rich data from a wide variety of disciplines and contexts. Organising these focus groups was inexpensive and preferred by the study's participants. Implications for practice Researchers should consider using technology-enhanced focus groups to generate data to develop health-related measurement tools.