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Shared decision making is a concept essential to establishing meaningful goals of care that reflect one's preferences, values, beliefs, culture, and quality of life. This rapid review considered shared decision making from the perspective of seriously ill or medically complex children receiving inpatient palliative or end-of-life care, where shared decision making is made on behalf of and in the child's best interest. A total of 118 articles were screened, resulting in the selection of 12 articles using a systematic process. Emergent themes noted and discussed include the roles of family and clinicians, explorative communication, transparency, cultural implications, and ethical challenges. [ABSTRACT FROM AUTHOR]

Alzheimer's disease is a serious illness with a protracted caregiving experience; however, care coordination interventions often lack the inclusion of palliative care. The purpose of this integrative review is to identify and synthesize existing care coordination interventions that include palliative care for individuals with dementia and their caregivers living in community settings. The Whittemore and Knafl framework guided the review, with data analysis guided by the SELFIE framework domains. Study quality was assessed using the Mixed Methods Appraisal Tool, while the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines informed reporting results. Nine care coordination interventions involving family caregivers across eighteen publications were identified. Only a single intervention explicitly mentioned palliative care, while the remaining interventions included traditional palliative care components such as advance care planning, symptom management, and emotional support. Many of the identified interventions lacked theoretical grounding and were studied in non-representative, homogeneous samples. Further research is needed to understand the lived experiences of people with dementia and their caregivers to alleviate care coordination burden. [ABSTRACT FROM AUTHOR]

Dyspnea is the most common and activity-limiting symptom for those with chronic obstructive pulmonary disease (COPD). Treatment is complex, palliative care (PC) dyspnea relief interventions are poorly understood, and PC remains underutilized in COPD despite national guidelines and recommendations. The purpose of this rapid review was to explore the concept of dyspnea and role of PC through the lens of providers, caregivers, and patients with COPD. A systematic approach for synthesis was used to identify 13 articles published between January 2018 and October 2023. Team members compared data via visualization and theme clustering to identify key conclusions describing operationalization of dyspnea, management, and PC implications. Dyspnea operationalization was challenging, with inconsistent measurement and terminology. Dyspnea was a significant burden in COPD and contributed to complexity of treatment. Opioids were used most often to treat dyspnea, but provider perspectives and biases can influence treatment decisions and perceptions of opioid therapy by the patient and caregiver. Evidence-based clinical practice guidelines and policies are needed to clarify the use of opioid therapy for dyspnea management to reduce stigmatization and barriers to treatment. Provider education should emphasize a multipronged approach to treatment of dyspnea in COPD with integration of PC early in the care continuum. [ABSTRACT FROM AUTHOR]

The primary aim of this integrative review was to critically evaluate and synthesize published, peer-reviewed research to better understand self-management strategies of children and adolescents with chronic diseases. This review was guided by Whittemore and Knafl's methodological framework. The Pediatric Self-management Model provided the theoretical framework for understanding how self-management behaviors operate within the domains of individual, family, community, and healthcare systems. In June 2019, the electronic databases of EBSCOhost, PubMed, and Scopus, along with reference lists of applicable studies, were searched for appropriate publications. The initial searches yielded 920 citations. Of these, 11 studies met inclusion criteria. A key finding was that involving children and adolescents in the design and delivery phases of interventions was most effective in improving self-management when the interventions did not outweigh cognitive ability or maturity level. In addition, incorporating self-efficacy promotion into self-management interventions may lead to greater sense of responsibility and improved health outcomes. In terms of intervention delivery of self-management strategies, the use of technological platforms and devices was revealed as a promising avenue for youth. A final implication was the importance of family members, peers, and healthcare providers in supporting children and adolescents in adopting self-management behaviors. [ABSTRACT FROM AUTHOR]

Background: Kangaroo care (KC) is recommended for infants during their stay in the neonatal intensive care unit (NICU) due to the benefits to infant growth, stabilized vital signs, and parental bonding; however, literature primarily explores the physiologic benefits, barriers, and facilitators to KC practice. Little is known about the context and mechanisms of KC implementation.Purpose: This realist review is to explore what NICU policies tell us about practices to implement KC in the NICU.Methods: Policies were obtained via email, database, and search engines. Criteria were established to review each policy. Data were entered into a database then exported for frequency counts of identified characteristics.Results: Fifty-one policies were reviewed, which revealed inconsistencies in the implementation of KC practices. Inconsistencies include variability in infant postmenstrual ages and weight criteria, infant medical equipment in place during participation, duration and frequency of KC, KC documentation, and ongoing monitoring requirements.Implications For Practice: KC implementation varies widely across NICUs, even with similar infant populations. Exclusion of some infants from receiving KC may decrease the potential beneficial outcomes known to result from KC.Implications For Research: More research to understand KC best practice recommendations and implementation in the NICU is needed. Studies are needed to evaluate the duration and frequency of KC, as well as the benefits to infants and families to optimize KC in the NICU setting. [ABSTRACT FROM AUTHOR]

Purpose: To identify how post-stroke disability outcomes are assessed in studies that examine racial/ethnic disparities and to map the identified assessment content to the International Classification of Functioning, Disability, and Health (ICF) across the time course of stroke recovery. Methods: We conducted a scoping review of the literature. Articles published between January 2001 and July 2017 were identified through Scopus, PubMed, CINAHL, and PsycINFO according to predefined inclusion and exclusion criteria. Results: We identified 1791 articles through database and hand-searching strategies. Of the articles, 194 met inclusion criteria for full-text review, and 41 met inclusion criteria for study inclusion. The included studies used a variety of outcome measures encompassing domains within the ICF: body functions, activities, participation, and contextual factors across the time course of stroke recovery. We discovered disproportionate representation among racial/ethnic groups in the post-stroke disability disparities literature. Conclusions: A wide variety of assessments are used to examine disparities in post-stroke disability across the time course of stroke recovery. Several studies have identified disparities through a variety of assessments; however, substantial problems abound from the assessments used including inconsistent use of assessments, lacking evidence on the validity of assessments among racial/ethnic groups, and inadequate representation among all racial/ethnic populations comprising the US. An enhanced understanding of racial/ethnic disparities in post-stroke disability outcomes is inherently important among rehabilitation practitioners who frequently engage with racial/ethnic minority populations across the time course of stroke recovery. Clinicians should carefully consider the psychometric properties of assessment tools to counter potential racial bias. Clinicians should be aware that many assessments used in stroke rehabilitation lack cultural sensitivity and could result in inaccurate assessment findings. [ABSTRACT FROM AUTHOR]

Dyspnea is the most common and activity-limiting symptom for those with chronic obstructive pulmonary disease (COPD). Treatment is complex, palliative care (PC) dyspnea relief interventions are poorly understood, and PC remains underutilized in COPD despite national guidelines and recommendations. The purpose of this rapid review was to explore the concept of dyspnea and role of PC through the lens of providers, caregivers, and patients with COPD. A systematic approach for synthesis was used to identify 13 articles published between January 2018 and October 2023. Team members compared data via visualization and theme clustering to identify key conclusions describing operationalization of dyspnea, management, and PC implications. Dyspnea operationalization was challenging, with inconsistent measurement and terminology. Dyspnea was a significant burden in COPD and contributed to complexity of treatment. Opioids were used most often to treat dyspnea, but provider perspectives and biases can influence treatment decisions and perceptions of opioid therapy by the patient and caregiver. Evidence-based clinical practice guidelines and policies are needed to clarify the use of opioid therapy for dyspnea management to reduce stigmatization and barriers to treatment. Provider education should emphasize a multipronged approach to treatment of dyspnea in COPD with integration of PC early in the care continuum., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)