Lived experiences of American adults who survive COVID-19: Implications for physical activity and interpersonal stress.

INTRODUCTION: The cumulative number of COVID-19 cases has surpassed 579 million globally. Symptoms during and after COVID-19 infection vary from mild cold symptoms to severe multisystem illness. Given the wide range of symptom presentations and complications post-COVID-19, the purpose of this study was to describe the lived experience of American adults surviving COVID-19. METHOD: This study employed an exploratory qualitative description design. Semi-structured interviews were conducted with a sample of 35 individuals (White [94%], female [71%], Mage = 43.7 years), with proximity to a university in an urban Midwest American city. Interviews occurred between May and August 2021, 3 or more months after participants tested positive for COVID-19. RESULTS: Forty percent of the 35 participants experienced prolonged COVID-19 symptoms impacting their lifestyle. Four themes characterized the impacts of the post-COVID-19 condition on the lives of the participants within the context of a global pandemic: (a) disruptions in health and well-being, (b) persistent uncertainty, (c) disruptions in interpersonal relationships, (d) beneficent outcomes and adaptation. DISCUSSION: This study of COVID-19 has identified important implications for physical activity and interpersonal stress. Prolonged COVID-19 symptoms led to disruptions in the health, well-being, and interpersonal relationships of participants. Health care professionals need to attend to symptoms post-COVID-19, assess interpersonal functioning, and provide guidance on physical activity. Future studies are recommended to track consequences of COVID-19's impact on long-term health and well-being. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Professional responsibility, nurses, and conscientious objection: A framework for ethical evaluation.

Conscientious objections (CO) can be disruptive in a variety of ways and may disadvantage patients and colleagues who must step-in to assume care. Nevertheless, nurses have a right and responsibility to object to participation in interventions that would seriously harm their sense of integrity. This is an ethical problem of balancing risks and responsibilities related to patient care. Here we explore the problem and propose a nonlinear framework for exploring the authenticity of a claim of CO from the perspective of the nurse and of those who must evaluate such claims. We synthesized the framework using Rest's Four Component Model of moral reasoning along with tenets of the International Council of Nursing's (ICN) Code of Ethics for Nurses and insights from relevant ethics and nursing ethics literature. The resulting framework facilitates evaluating potential consequences of a given CO for all involved. We propose that the framework can also serve as an aid for nurse educators as they prepare students for practice. Gaining clarity about the sense in which the concept of conscience provides a defensible foundation for objecting to legally, or otherwise ethically, permissible actions, in any given case is critical to arriving at an ethical and reasonable plan of action.

A Scoping Review of Diagnosis of Autism Spectrum Disorder in Primary Care.

INTRODUCTION: This scoping review was performed to collect, examine, and present literature on interventions promoting the diagnosis of Autism Spectrum Disorder (ASD) in U.S. primary health care settings. METHOD: The literature searched was from 2011-2022, in the English language, in PubMed, CINAHL, Psych INFO, Cochrane, and Web of Science, for persons with autism or ASD aged ≤ 18 years. RESULTS: Six studies met the search criteria, including a quality improvement project, a feasibility study, a pilot study, and three primary care provider (PCP) intervention trials. Measured outcomes included: accuracy of diagnosis (n = 4), practice change maintenance (n = 3), time to diagnosis (n = 2), specialty clinic appointment wait time (n = 1), PCP comfort making ASD diagnosis (n = 1), and increased ASD diagnosis (n = 1). DISCUSSION: Results inform future implementation of PCP ASD diagnosis for the most obvious cases of ASD and research evaluating PCP training, using longitudinal measures of PCP knowledge of ASD and intention to diagnose.

Improving Inclusion for Children With Special Health Care Needs in Childcare Settings: Results From a Statewide Survey of Childcare Professionals.

INTRODUCTION: Families of children with special health care needs (CSHCN) routinely struggle to find suitable childcare. These families value childcare capable of supporting their child's needs, known as inclusive care, that requires trustworthy staff trained to safely care for CSHCN. METHOD: This study aimed to understand the training, experience, confidence, and perceived barriers to providing inclusive care for CSHCN from the perspective of childcare providers and directors. Childcare providers (n = 263) and directors (n = 418) responded to a statewide survey in Wisconsin in 2019. RESULTS: Results show that both childcare providers and directors perceive that the providers lack confidence in providing inclusive care. Lack of staffing, training, and expertise of childcare providers were the most frequently reported barriers to provide inclusive care. DISCUSSION: These findings confirm the need for additional education, training, resources, and research to create and maintain more inclusive childcare settings for CSHCN.

COVID-19 Vaccine Acceptance or Refusal Among US Nurses: A Descriptive Cross-Sectional Study.

INTRODUCTION: Nurse turnover has accelerated during the COVID-19 pandemic. Nurse refusal of mandated vaccines contributes to understaffing and affects patient health outcomes. The purposes of this study were to describe (1) nurse reasons for COVID-19 vaccine decisions and (2) the relationship between vaccine status and nurse characteristics. METHODS: This cross-sectional descriptive study employed a survey of US nurses who worked in nursing during the COVID-19 pandemic. The survey included a free-text question about COVID-19 vaccine uptake rationale, self-reported vaccine acceptance/refusal, and demographic data. RESULTS: Of the 1682 participants, 11.2% refused the COVID-19 vaccine. Higher education level was correlated with greater vaccine acceptance rates (P < 0.001). Themes for vaccine rationale included safeguarding well-being, trust in the science, coercion to vaccinate, perceived immunity, and concern about preexisting health conditions. CONCLUSIONS: The risks of COVID-19 vaccine mandates may be greater than the potential benefits given the potential for compounding workforce attrition during a nursing staffing crisis. Further research is needed to outline the relationships between vaccine education, advocacy, and vaccine uptake among nurses.

Nurses' Experiences Implementing e PED : An iPad Application to Guide Quality Discharge Teaching.

Quality discharge teaching prepares patients and families to transition safely from hospital to home. Technology can enhance and support quality discharge teaching by promoting patient family engagement during the transition. The purpose of this mixed methods study was to explore clinical nurses' experience with using Engaging Parents in Education for Discharge, an iPad application to guide quality discharge teaching. Twelve nurses at a large Midwestern Children's Hospital participated in small focus groups after use of the Engaging Parents in Education for Discharge application and completed a questionnaire on their perception of the acceptability and feasibility of the app. Findings revealed three themes: (1) development and deployment issues focused on the importance of training and support by the study team during implementation; (2) workflow integration centered on the importance of incorporating use of the app into current workflows and to preserve effective communication strategies with parents to optimize use in the healthcare setting; and (3) nurses perceived value in the use of the Engaging Parents in Education for Discharge app for beneficial scripting, questions on discharge topics often forgotten, and guidance for complex patients. Results of this study offer insight into key components for consideration when implementing and integrating technology to aid nursing practice.

Parent Physical Activity: A Systematic Review of the Literature and Recommendations for Parents of Children With Autism Spectrum Disorder.

BACKGROUND: The aims of this review were to describe exercise interventions, facilitators, and barriers to physical activity for parents of children with autism spectrum disorder. METHODS: A systematic review of the literature, appraising the validity of each article with Melnyk and Fineout-Overholt's level of evidence, from different databases CINAHL, Cochrane, PsycINFO, PubMed, ProQuest, and Web of Science between 2000 and 2020 was conducted. As the initial search revealed no articles on exercise interventions and only 2 articles with children with autism spectrum disorder, the aim was widened to all parents of children. RESULTS: Forty-five articles were identified on barriers to physical activity including being the primary caregiving parent, perception of guilt and selfishness, and adhering to exercise programs they do as part of research, once research ends. Facilitators for physical activity including parents being more likely to exercise if they can bring their child with them and parents preferring exercise that is a lifelong habit, such as walking. CONCLUSIONS: Due to the lack of research on parents of children with autism spectrum disorder, recommendations include development and testing of interventions for parents of children with this condition including family-based exercise interventions where children and parents have a choice to exercise together.

One Size Does Not Fit All: Discharge Teaching and Child Challenging Behaviors.

This study compares quality of discharge teaching and care coordination for parents of children with challenging behaviors participating in a nursing implementation project, which used an interactive iPad application, to usual discharge care. Unlike parents in the larger quasi-experimental longitudinal project, parents of children with challenging behaviors receiving the discharge teaching application (n = 14) reported lower mean scores on the quality of discharge teaching scale-delivery subscale (M = 8.2, SD = 3.1) than parents receiving usual care (n = 11) (M = 9.6, SD = 4.7) and lower scores on the Care Transition Measure (M = 2.44, SD = 1.09) than parents receiving usual care (M = 3.02, SD = 0.37), with moderate to large effects (0.554-0.775). The discharge teaching approach was less effective with this subset, suggesting other approaches might be considered for this group of parents. Further study with a larger sample specific to parents of children with challenging behaviors is needed to assess their unique needs and to optimize their discharge experience.

Swim Program Pilot for Children with Autism: Impact on Behaviors and Health.

The purpose of this mixed methods pre-/post-pilot intervention study was to assess parental psychological health and child challenging behaviors before and after a swimming program for children with autism. Participants were 10 parent-child dyads. Child's challenging behaviors were lower in the post testing (Cohen's d = 0.07-0.45). Mean scores were improved for parent perception of general health (Cohen's d = 0.22). Three themes emerged from the post swim program focus group: (a) Parent satisfaction with instructors with sub themes (i) firmness (ii) creativity, and (iii) promotion of social interaction and sharing, (b) improved child sleeping, and (c) family dynamics with sub themes (i) siblings wanted to swim and (ii) parents' fear of drowning. Preliminary results point to improved child behaviors and parent perception of general health. Future studies can focus on expanding the swim program to include all family members.

Engaging Parents in Education for Discharge (ePED): Evaluating the Reach, Adoption & Implementation of an Innovative Discharge Teaching Method.

PURPOSE: This paper describes the evaluation of the implementation of an innovative teaching method, the "Engaging Parents in Education for Discharge" (ePED) iPad application (app), at a pediatric hospital. DESIGN AND METHODS: The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework was used to guide the evaluation. Three of the five RE-AIM elements are addressed in this study: Reach, Adoption, and Implementation. RESULTS: The Reach of the ePED was 245 of 1015 (24.2%) patient discharges. The Adoption rate was 211 of 245 (86%) patients discharged in the five months' study period. High levels of fidelity (89.3%) to Implementation of the ePED were attained: the Signs and Symptoms domain had the highest (93%) and Thinking Forward about Family Adjustment screen had the lowest fidelity (83.3%). Nurse themes explained implementation fidelity: "It takes longer", and "Forgot to do it." CONCLUSIONS: The ePED app operationalized how to have an engaging structured discharge conversation with parents. While the Reach of the ePED app was low under the study conditions, the adoption rate was positive. Nurses were able to integrate a theory-driven practice change into their daily routine when using the ePED app. IMPLICATIONS FOR PRACTICE: The rates of adoption and implementation fidelity support the feasibility of future hospital wide implementation to improve patient and family healthcare experience. Attention to training of new content and the interactive conversation approach will be needed to fully leverage the value of the ePED app. Future studies are needed to evaluate the maintenance of the ePED app.

Using the Engaging Parents in Education for Discharge (ePED) iPad Application to Improve Parent Discharge Experience.

PURPOSE: The purpose of this study was to evaluate the use of the Engaging Parents in Education for Discharge (ePED) iPad application on parent experiences of hospital discharge teaching and care coordination. Hypotheses were: parents exposed to discharge teaching using ePED will have 1) higher quality of discharge teaching and 2) better care coordination than parents exposed to usual discharge teaching. The secondary purpose examined group differences in the discharge teaching, care coordination, and 30-day readmissions for parents of children with and without a chronic condition. DESIGN/METHODS: Using a quasi-experimental design, ePED was implemented on one inpatient unit (n = 211) and comparison group (n = 184) from a separate unit at a pediatric academic medical center. Patient experience outcome measures collected on day of discharge included Quality of Discharge Teaching Scale-Delivery (QDTS-D) and care coordination measured by Care Transition Measure (CTM). Thirty-day readmission was abstracted from records. RESULTS: Parents taught using ePED reported higher QDTS-D scores than parents without ePED (p = .002). No differences in CTM were found between groups. Correlations between QDTS-D and CTM were small for ePED (r = 0.14, p 0.03) and non-ePED (r = 0.29, p < .001) parent groups. CTM was weakly associated with 30-day readmissions in the ePED group. CONCLUSION: The use of ePED by the discharging nurse enhances parent-reported quality of discharge teaching. PRACTICE IMPLICATIONS: The ePED app is a theory-based structured conversation guide to engage parents in discharge preparation. Nursing implementation of ePED contributes to optimizing the patient/family healthcare experience.

Testing allostatic load factor structures among adolescents: A structural equation modeling approach.

OBJECTIVES: Allostatic load (AL) represents cumulative biological "wear and tear" that results from chronic stress exposure over time, ultimately increasing risk for chronic disease. A consensus is lacking regarding the best operationalization of AL, particularly for younger, less studied populations. The purpose of this study was to test multiple hypothesized factor structures for AL to determine the best measurement approach for adolescents. METHODS: We analyzed biologic data for 1900 adolescents aged 12-18 from four waves (2003-2010) of the National Health and Nutrition Examination Survey. AL indicator variables included cardiovascular (systolic BP, creatinine), metabolic (HDL, LDL, triglycerides, insulin, fasting glucose, HA1C, body mass index [BMI], waist circumference), and immune (albumin, CRP, WBC, EBV) biomarkers. Structural equation modeling was used to test the fit of five hypothesized AL factor structures. RESULTS: The data best supported a unidimensional factor structure, where the AL construct directly influenced each of the indicator variables. All but two of the indicators (HDL and albumin) had positive factor loadings, thus, as AL increases the values for those indicators also increase. The best indicators for AL were those measuring metabolic dysregulation, with BMI and waist circumference having the highest factor loadings (0.95 and 0.982, respectively). CONCLUSIONS: BMI and waist circumference may be some of the earliest clinical signs of elevated AL that manifest among adolescents. Future research should aim to include neuroendocrine biomarkers in their AL measures to have a more robust estimation of AL in younger populations.

Interdisciplinary collaboration needed in obtaining high-quality medical information in child abuse investigations.

BACKGROUND: Despite reporting legislation, healthcare providers (HCPs) do not always report and collaborate in cases of suspected child abuse. Recognizing this leaves children at risk, the Wisconsin Child Abuse Network (WI CAN) sought to understand barriers to mandated reporting and collaboration with child abuse investigators. OBJECTIVE: The purpose of the study was to investigate barriers for professionals in providing and obtaining high-quality medical information in child abuse investigations. PARTICIPANTS AND SETTING: Participants included five discipline-specific focus groups: HCPs, child protective services (CPS), law enforcement, lawyers, and judges. All professionals had been directly involved in Wisconsin child abuse cases. METHODS: This qualitative study consisted of discipline-specific focus groups, directed by open-ended interview questions. Data analysis was completed through the narrative inquiry methodology. RESULTS: Barriers to providing and obtaining high-quality medical information in child abuse investigations were both discipline-specific and universal amongst all groups. Discipline-specific barriers included: HCPs' discomfort with uncertainty; CPS' perception of disrespect and mistrust by HCPs; law enforcement's concerns with HCPs' overstepping professional boundaries; lawyers' concern of HCPs' discomfort with court proceedings; and judges' perception of a lack of understanding between all disciplines. Universal barriers included: value of high-quality medical information in child abuse investigations, burden of time and money; unequal resources between counties; a need for protocols, and a need for interdisciplinary collaboration. CONCLUSION: Findings from this study suggest several ways to address identified barriers. Possible interventions include equalizing resources between urban and rural counties (specifically financial resources and access to child abuse experts); protocolizing reporting and investigations; and, increasing interprofessional education.

Parents' perspectives on caring for children after solid organ transplant.

PURPOSE: To explore parents' experiences of the transition from hospital to home and complex chronic illness management following their children's solid organ transplant (SOT). DESIGN AND METHODS: Qualitative component of a larger mixed methods longitudinal study. Parents of SOT recipients were interviewed three times following hospital discharge from five major pediatric transplant hospitals in the United States. RESULTS: Analysis of parent interviews (N = 48) resulted in three themes that characterized the phases of transition to home and complex chronic illness care. Three themes, corresponding to the three time periods of data collection, included "getting back to normal" at 3 weeks, "becoming routine" at 3 months, and "facing a future" at 6 months. Challenges families experienced over the course of their transition are also described. PRACTICE IMPLICATIONS: The transition from hospital to home and complex chronic condition care is challenging and changes over time. Nurses are called upon to prepare parents to become knowledgeable and confident to care for the child after hospital discharge. Nurses can best support families in transition after SOT by anticipating and understanding their dynamic challenging complex care needs.

Translating Research to Practice for Children With Autism Spectrum Disorder: Part I: Definition, Associated Behaviors, Prevalence, Diagnostic Process, and Interventions.

INTRODUCTION: The number of children with autism spectrum disorder (ASD) is rising, along with the potential for challenging behaviors during health care encounters. METHOD: We present an overview of the emerging science related to ASD diagnosis and interventions for children with ASD. RESULTS: Emerging science on ASD reveals common associated challenging behaviors, increasing prevalence, emphasis on early diagnosis at 18 to 24 months of age, changes in the diagnostic process with criteria from the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, and interventions with medication, education, and behavior management. DISCUSSION: Family and health care provider preparation strategies facilitate care of children with ASD and their families. Early diagnosis at 18 to 24 months of age and evidence-based interventions contribute to best outcomes for children and families. Health care providers must be aware of the state of the science for diagnosis and best practices to provide family-centered care for this growing population.

Parents' Perspectives on Shared Decision Making for Children With Solid Organ Transplants.

INTRODUCTION: The Institute of Medicine prioritizes active family and clinician participation in treatment decisions, known as shared decision making (SDM). In this article we report the decision-making experiences for parents of children who had a solid organ transplant. METHOD: We performed a prospective longitudinal mixed methods study at five major U.S. children's medical centers. Qualitative interview data were obtained at 3 weeks, 3 months, and 6 months after hospital discharge following the child's transplant. RESULTS: Forty-eight parents participated in the study. Three themes were identified: (a) Parents expect to participate in SDM; (b) parents seek information to support their participation in SDM; and (c) attributes of providers' professional practice facilitates SDM. SDM was facilitated when providers were knowledgeable, transparent, approachable, accessible, dependable, and supportive. CONCLUSIONS: Parents expect to participate in SDM with their transplant team. Health care providers can intentionally use the six key attributes to engage parents in SDM. The results provide a framework to consider enhancing SDM in other chronic illness populations.

Translating Research to Practice for Children With Autism Spectrum Disorder: Part 2: Behavior Management in Home and Health Care Settings.

INTRODUCTION: Managing home and health care for children with autism spectrum disorder can be challenging because of the range of symptoms and behaviors exhibited. METHOD: This article presents an overview of the emerging science related to the methods to foster family self-management of common concerns regarding activities of daily living and behaviors, as well as for the health care provider in primary and acute health care settings. RESULTS: Recommendations are provided to enhance the overall delivery of services, including understanding and managing a child's challenging behaviors, and supporting family management of common activities of daily living and behaviors. DISCUSSION: Health care providers' knowledge of evidence-based recommendations for providing care, supporting family self-management of common concerns, and referral heighten the likelihood of better outcomes for children with autism spectrum disorder.

Fostering Ambulation for a Preschool Child with Rett Syndrome: A Case Report.

UNLABELLED: Children with Rett Syndrome (RS) have neuromotor impairments that impact their mobility. Poor hand function among children with RS limits the selection of an assistive device for ambulation. PURPOSE: The purpose of this case report is to describe the process of selecting an assistive device for a child with RS to promote ambulation. METHOD: This single subject case reports on a 5-year-old girl with RS at a suburban mid-western early childhood special education setting. RESULTS: The child in this case was able to walk the farthest distances with a metal toy shopping cart and then with an anterior facing four-wheeled walker. CONCLUSION: The outcome suggests that physical therapists and health professionals caring for young children with RS consider using a metal toy shopping cart to establish and practice ambulation prior to selection of a longer term, adjustable anterior facing walker like the one in this case report.

Attributed meanings and strategies to prevent challenging behaviors of hospitalized children with autism: two perspectives.

INTRODUCTION: Understanding is limited of the meaning attributed to behaviors of children with autism spectrum disorder and strategies used to prevent challenging behaviors in the context of hospitalization. METHODS: This qualitative study consisted of two focus groups (n = 10; five mothers and five health care providers [HCPs]). Transcripts were analyzed using the qualitative method of narrative inquiry. RESULTS: The meaning attributed to behaviors by the mothers and the HCPs differed. The mothers attributed behaviors to the child's communication of frustration, hyperactivity, and self-calming. The HCPs attributed challenging behaviors to self-stimulation and child aggression. Strategies to prevent behaviors also differed. Mothers focused on preparation prior to hospitalization and attempts to partner with HCPs. HCPs identified fewer strategies and consulted mothers for strategies to manage challenging behaviors. DISCUSSION: HCP and parent collaboration could lead to strategies to increase supports for children with autism spectrum disorder in the hospital to decrease their frustration and challenging behaviors.