Care partners experience of an oral health intervention for individuals with mild cognitive impairment and mild dementia using behavior change technique: A qualitative study.

Oral health declines in older adults with cognitive impairment. We aimed to improve oral hygiene outcomes for individuals with mild cognitive impairment (MCI) or mild dementia (MD) by fostering behavior changes among carepartners assisting them. We used qualitative data of verbatim transcripts of coaching sessions with carepartners (n = 17 dyads:10 dyads for MCI, 7 dyads for MD). Directed and emergent coding were used to understand behavior change techniques (BCTs). BCTs were compared with carepartners of participants with MCI and MD. Most frequently used BCTs in both groups: prompts and cues, instruction on how to perform the behavior, review behavioral goal, and problem solving. Different BCTs emerged in study: social support-unspecified of the MCI group and credible source for MD group. Findings clarified active intervention components, common BCTs used by carepartners, and different BCT approaches for both participants. Findings help to elucidate the mechanisms of changes in individuals' behaviors in these interventions.

A Hybrid Pragmatic and Factorial Cluster Randomized Controlled Trial for an Anti-racist, Multilevel Intervention to Improve Mental Health Equity in High Schools.

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

Distinct Co-occurring Morning and Evening Fatigue Profiles in Patients With Gastrointestinal Cancers Receiving Chemotherapy.

BACKGROUND: Patients with gastrointestinal cancers experience diurnal variations in fatigue severity during chemotherapy that decrease their functional status and quality of life. OBJECTIVES: Study purposes were to identify subgroups of patients with distinct co-occurring morning and evening fatigue profiles and evaluate for differences among these subgroups in demographic, clinical, stress, and symptom characteristics. METHODS: Patients with gastrointestinal cancers (n = 405) completed questionnaires 6 times over 2 cycles of chemotherapy. The Lee Fatigue Scale was used to evaluate diurnal variations in fatigue severity. Latent profile analysis was used to identify subgroups of patients with distinct co-occurring morning AND evening fatigue profiles. Differences among the subgroups in demographic, clinical, stress, and symptom characteristics at enrollment were evaluated using parametric and nonparametric analyses. RESULTS: Two classes were identified, namely: low morning and moderate evening fatigue (ie, Low-Moderate, 60.0%) and high morning and high evening fatigue (ie, Both High, 40.0%). Compared with the Low-Moderate class, the Both High class was significantly younger, female, unmarried, and unemployed and lacked regular exercise. In addition, they had childcare responsibilities, lower annual income, lower functional status, higher comorbidity burden, and self-reported anemia and depression. Patients in the Both High class reported higher levels of anxiety, depressive symptoms, sleep disturbance, pain, and stress, and lower levels of energy and cognitive function. CONCLUSIONS: Findings provide new insights into the risk factors for higher levels of co-occurring morning and evening fatigue in patients with gastrointestinal cancers. IMPLICATIONS FOR PRACTICE: Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study.

Background: Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods: This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings: Among 2212 participants, we identified five classes, including four classes with "Low" (565 participants, 26%), "Normal" (651 participants, 29%), "High" (569 participants, 26%), or "Very High" (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, "High Fatigue/Sleep/Pain and Low Anxiety/Depression" (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the "High" class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of "High Fatigue/Sleep/Pain and Low Anxiety/Depression" class participants were similar to the "High" severity class. Interpretation: Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life. Funding: National Institute of Nursing Research (F31NR019007), Canadian Institutes of Health Research, Arthritis Society Canada, the Lady Davis Institute for Medical Research, the Jewish General Hospital Foundation, McGill University, Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, and Scleroderma Queensland.

Assessing Depressive Symptoms in Patients With Cancer Treated With Interleukin-2: A Comparison of 2 Measures.

BACKGROUND: High-dose interleukin-2 is a therapy available for individuals with renal cell carcinoma; however, it can produce adverse effects, specifically depressive symptoms. There is limited information regarding the trajectory of depressive symptoms and measurement-based care assessment of depressive symptoms. OBJECTIVE: The purpose was to describe the trajectory of depressive symptoms and compare 2 depression measures. METHODS: A descriptive, mixed-method case study approach was used to describe the longitudinal trajectory of depressive symptoms The qualitative assessment included a journal entry and an interview. The quantitative depression symptom severity measures included the 8-item self-report Patient-Reported Outcomes Measurement Information System Depression and the 30-item Inventory of Depressive Symptomatology-Clinician Rated (IDS-C). RESULTS: Ten cases were enrolled. The maximum number of interleukin-2 doses that any patient received within a single hospitalization ranged from 4 to 12. Mean scores on the 8-item Patient-Reported Outcomes Measurement Information System Depression showed no changes in depressive symptoms from pretreatment to posttreatment, nor across hospitalizations. Mean total scores on the IDS-C increased from "normal" to "mild severity" depressive symptom range across all treatment cycles, suggesting transient depressive symptoms within hospitalizations. Qualitative data from the case supported the IDS-C increase, suggesting that the patient developed depressive symptoms pretreatment to posttreatment. CONCLUSIONS: Understanding the trajectory of depressive symptoms allows for the identification of critical time points when depressive symptoms present and change across treatment. It is critical to use measurement-based care using validated measures to assess for the presence and changes in depressive symptoms. IMPLICATIONS FOR PRACTICE: Validated self-report or clinician-rated depression symptom measures should be used to document the presence or absence of depressive symptoms in this population.

Distinct morning and evening fatigue profiles in gastrointestinal cancer during chemotherapy.

BACKGROUND: Purposes were to identify subgroups of patients with gastrointestinal cancers with distinct morning and evening fatigue severity profiles and evaluate for differences among these subgroups in demographic and clinical characteristics, co-occurring symptoms and quality of life (QOL) outcomes. METHODS: Patients with gastrointestinal cancers (n=405) completed questionnaires six times over two cycles of chemotherapy. Latent profile analysis was used to identify distinct morning and evening fatigue profiles. Differences in demographic and clinical characteristics, co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: Two distinct mornings (ie, low and very high) and three distinct evenings (ie, low, moderate and very high) fatigue classes were identified. Common risk factors for both morning and evening fatigue included younger age, lower performance status, higher comorbidity burden and self-reported depression. Higher levels of morning fatigue were associated with being unmarried, living alone, being unemployed, having a lower income, lack of regular exercise and a self-reported diagnosis of anaemia. Higher levels of evening fatigue were associated with being women, white and having childcare responsibilities. Patients in the very high morning and evening fatigue classes reported higher levels of anxiety, depressive symptoms, sleep disturbance and pain and lower levels of attentional function and poorer QOL. CONCLUSION: Findings provide new insights into risk factors for and deleterious effects of morning and evening fatigue in patients with gastrointestinal cancers. Clinicians can use this information to identify high-risk patients and develop individualised interventions for morning and evening fatigue and other co-occurring symptoms.

Adaptive leadership in clinical encounters with women living with HIV.

BACKGROUND: Women living with HIV (WLWH) report low engagement in health care, missed office visits, and less engagement in the clinical encounter. Strengthening the clinical encounter for WLWH may improve health outcomes and quality of life. The Adaptive Leadership Framework for Chronic Illness offers specific adaptive leadership strategies for providers to improve patient-provider interactions. The purpose of this study was to examine adaptive leadership behaviors that contribute to the development of effective patient-provider communication from the perspectives of WLWH. METHODS: The descriptive, cross-sectional and qualitative study conducted interviews with 22 WLWH to assess perceptions of the clinical encounter related to HIV-related stigma, engagement in care, medical distrust, and experiences with discrimination and quality of life. Members of the study team using a set of a priori codes analyzed data using NVivo 12.0. RESULTS: Participants described two primary themes and subthemes of each for adaptive leadership behaviors. The primary theme for adaptive leadership of providers was "my provider cares about me"; subthemes were communication, trust building takes time, and supportive providers are trusted. The primary theme for adaptive leadership of WLWH themselves was "I care about me; subthemes were self-advocacy and self-empowerment. CONCLUSIONS: Providers can use adaptive leadership behaviors during clinical encounters to support WLWH, improve patient-provider communication, enhance trust, and improve patient outcomes.

Adaptive Challenges, Adaptive Work, and Adaptive Leadership Among Women Living With HIV in the Southern United States: Findings From a Qualitative Study.

ABSTRACT: Women living with HIV have a higher burden of non-AIDS comorbidities and prevalence of chronic conditions. The Adaptive Leadership Framework for Chronic Illness clarifies living with complex health challenges by delineating the technical work of health care providers as well as the adaptive work and leadership behaviors of patients and their providers. We conducted a descriptive, qualitative study of women residing in the Southern United States who were participating in the Women's Interagency HIV Study in North Carolina. Twenty-two participants (mean age = 52.2 years; 90.9% self-identifying as Black or African American) completed semi-structured qualitative interviews. We identified adaptive challenges (e.g., affective and disclosure challenges) and adaptive work and leadership behaviors. Women learned skills to care for their health and support their families and to work with their providers to manage their care. Findings support the importance of identifying leadership behaviors for the purpose of developing person-centered interventions.

Exploring Resilience Among Black Women Living With HIV in the Southern United States: Findings From a Qualitative Study.

ABSTRACT: Black women living with HIV (WLWH) face individual and sociostructural challenges. Despite these challenges, many exemplify remarkable levels of resilience and coping. Yet, research on resilience and coping in this population is limited. Twenty Black WLWH in the Southern United States completed semi-structured interviews that explored challenges facing WLWH. We identified six themes related to resilience and coping: self-acceptance, disclosure, self-compassion, social support, will to live, and service. Of these, social support was a driving protective element and an essential component to building and sustaining resilience and coping. Women who experienced positive support often expressed a will to live as well as a desire to support other WLWH. Resilience and social support were characterized by patterns of reciprocity, in that they were mutually sustaining, stabilizing, and strengthening.

Oncology Nursing Symptom Science: Overview of the NINR, ONS, and NCI Symptom Science Colloquium.

This article provides an overview of the process, development, and evaluation of the Symptom Science Colloquium sponsored by the National Institute of Nursing Research, Oncology Nursing Society (ONS), and National Cancer Institute. This colloquium was the first of its kind to leverage the common goals of these institutes to advance oncology symptom science. Specifically, this article will identify the goals of the agencies involved and synergy in forming this collaboration, review the ONS Research Agenda that provided the blueprint for the colloquium, and offer insights and lessons learned to be used for future planning. The colloquium engaged roughly 500 participants from all levels of clinical (RNs, advanced practice nurses), educational (undergraduate, master's, doctorate), and research (students, faculty, scientists) expertise. Six featured expert speakers and 115 poster presentations focused on the latest research in symptom science, cancer survivorship, palliative and end-of-life care, and hot topics (COVID-19, health disparities). Fourteen networking sessions fostered opportunities to engage with international experts. Special awards emphasized mentee-mentor relationships and exemplary midcareer faculty. Based on this emphasis, the authors provide themes from the successful award applications as exemplars. A summary of participant satisfaction and recommendations for future collaborations to enhance and advance oncology symptom science are provided.

Distinct Sleep Disturbance Profiles in Patients With Gastrointestinal Cancers Receiving Chemotherapy.

BACKGROUND: Patients with gastrointestinal cancers experience moderate to high levels of sleep disturbance during chemotherapy that decreases their functional status and quality of life (QOL). OBJECTIVE: The objectives of this study were to identify subgroups of patients with gastrointestinal cancers with distinct sleep disturbance profiles and evaluate for differences among these subgroups in demographic, clinical, and sleep characteristics, as well as co-occurring symptoms and QOL outcomes. METHODS: Patients (n = 405) completed questionnaires 6 times over 2 cycles of chemotherapy. Latent profile analysis was used to identify subgroups of patients with distinct sleep disturbance profiles. RESULTS: Three distinct sleep disturbance profiles (ie, low, high, very high) were identified. Compared with the low class, patients in the other 2 classes were significantly younger and less likely to be married and to exercise on a regular basis and received a higher number of previous treatments. Compared with the low class, patients in the other 2 classes reported higher levels of anxiety, depressive symptoms, morning and evening fatigue, and pain and lower levels of attentional function and QOL scores at enrollment. CONCLUSIONS: This study is the first to use latent profile analysis to identify subgroups of patients with gastrointestinal cancers with distinct sleep disturbance profiles. Findings provide new insights on the associations between sleep disturbance and multiple co-occurring symptoms in these patients. IMPLICATIONS FOR PRACTICE: Clinicians can identify patients who are at the highest risk for sleep disturbance and recommend a variety of sleep hygiene interventions (eg, establishment of a bedtime routine), as well as initiate interventions for other co-occurring symptoms.

Using Technology to Measure Older Adults' Social Networks for Health and Well-Being: A Scoping Review.

BACKGROUND AND OBJECTIVES: Social networks affect the health and well-being of older adults. Advancements in technology (e.g., digital devices and mHealth) enrich our ability to collect social networks and health data. The purpose of this scoping review was to identify and map the use of technology in measuring older adults' social networks for health and social care. RESEARCH DESIGN AND METHODS: The Joanna Briggs Institute methodology was followed. PubMed (MEDLINE), Sociological Abstracts, SocINDEX, CINAHL, and Web of Science were searched for relevant articles. Conference abstracts and proceedings were searched via Conference Papers Index, the American Sociological Society, and The Gerontological Society of America. Studies published in English from January 2004 to March 2020 that aimed to improve health or social care for older adults and used technology to measure social networks were included. Data were extracted by 2 independent reviewers using an a priori extraction tool. RESULTS: The majority of the 18 reviewed studies were pilot or simulation research conducted in Europe that focused on older adults living in the community. The various types of technologies used can be categorized as environment-based, person-based, and data-based. DISCUSSION AND IMPLICATIONS: Technology facilitates objective and longitudinal data collection on the social interactions and activities of older adults. The use of technology to measure older adults' social networks, however, is primarily in an exploratory phase. Multidisciplinary collaborations are needed to overcome operational, analytical, and implementation challenges. Future studies should leverage technologies for addressing social isolation and care for older adults, especially during the coronavirus disease 2019 pandemic.

Adaptive Challenges and Family Support: Patient Self-Management during Treatment for Chronic Hepatitis C.

The authors describe a family's adaptive challenges and adaptive work during a family member's treatment for Chronic Hepatitis C. We audiorecorded index and final clinical visits and interviewed participants (patients and providers) following the visits. We interviewed by telephone and reviewed medical records over the course of treatment. Transcripts were analyzed using directed content analysis. Three themes were identified: family adaptive challenges, patient-described aspects of family members' adaptive challenges, and family adaptive work. There were four subthemes related to family adaptive work. The adaptive leadership framework for chronic illness provided direction for future family intervention.

Pain and Self-Efficacy Among Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.

BACKGROUND: Pain is one of the most common symptoms affecting patients with systemic sclerosis; however, little is known about the relationship between self-efficacy and pain and changes in pain over time. OBJECTIVES: The purpose of this study was to describe the relationships between self-efficacy and pain in patients with systemic sclerosis, as well as determine whether changes in self-efficacy mediate changes in pain. METHODS: A prospective longitudinal study was conducted using data from the Scleroderma Patient-Centered Intervention Network Cohort. The baseline sample included 1,903 adults, with a trajectory subsample of 427 who completed 3-month assessments across 3 years. Hierarchical (sequential) forward multivariable regression, covarying for participant characteristics, was conducted to determine the association between self-efficacy and patient characteristics on pain outcomes. Trajectory models, covarying for participant characteristics, were used to examine changes in self-efficacy and pain outcomes across time and whether self-efficacy mediated the pain trajectories. RESULTS: Mean time since diagnosis was 9.5 years, with 39.2% diagnosed with diffuse cutaneous systemic sclerosis. Greater self-efficacy was associated with less pain interference and intensity. Increasing age, female gender, finger ulcers, and small joint contractures were related to greater pain interference and intensity. Esophageal gastrointestinal symptoms were associated with more pain interference. Self-efficacy and pain trajectories remained stable across time, and self-efficacy did not mediate the pain trajectories. DISCUSSION: This study identified self-efficacy, age, gender, finger ulcers, small joint contractures, and esophageal gastrointestinal symptoms as important correlates associated with pain in patients with systemic sclerosis. In addition, this study found that self-efficacy and pain outcomes remained stable over time, providing important insights into the longitudinal pain experiences of patients with systemic sclerosis.

Self-management interventions in systemic sclerosis: A systematic review.

Systemic sclerosis is a rare and incurable autoimmune disease in which patients are challenged with self-managing their disease. Systematic evaluation of the essential self-management intervention components and self-management outcomes is necessary to assess the state of the science of self-management for patients with systemic sclerosis. As such, the purpose of this systematic review was to identify and describe self-management interventions and their impact on self-management outcomes in adults with systemic sclerosis. Studies were included if they contained a self-management intervention, incorporated at least one self-management outcome identified as a common data element by the National Institute of Nursing Research (i.e., patient activation, self-efficacy, self-regulation, global health), and were conducted in adults with systemic sclerosis. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, PubMed, Cumulative Index of Nursing and Allied Health Literature, and Embase were searched from the inception of each database to March 2020, yielding a total of 215 studies. Of these reports, 16 met the inclusion criteria for this review. There was notable variability in the types of self-management interventions and their effects on key self-management outcomes. Self-management interventions focused on improving physical function through rehabilitation programs were the most common interventions (n = 7). The poor methodological quality of the studies included in this systematic review, however, limited the synthesis of and recommendations for self-management interventions in adults with systemic sclerosis. Future research in systemic sclerosis should include key self-management outcomes in larger, more rigorously designed studies to allow for comparisons across studies and to advance the science of self-management.

A Qualitative Study of the Experiences of Living With Multiple Myeloma.

PURPOSE: To explore the ways in which multiple myeloma affects an individual's life in the modern treatment era. PARTICIPANTS & SETTING: 15 individuals with multiple myeloma and 10 clinicians were recruited from two academic medical centers in the southeastern United States. METHODOLOGIC APPROACH: Semistructured interviews were conducted with individuals with multiple myeloma and clinicians to explore the effect of a multiple myeloma diagnosis and treatment on individuals' lives. Transcribed interviews were analyzed using conventional content analysis. FINDINGS: The following four themes emerged from the analysis. IMPLICATIONS FOR NURSING: The treatment journey for those with multiple myeloma can be lifelong and may require frequent visits to an oncologist and, potentially, many successive lines of therapy. Life effects are far-reaching and long-term. Nurses should be aware of the interprofessional resources to help meet these individuals' needs. With thorough assessment, care planning, and education, nurses can play a key role in mitigating the negative effects of multiple myeloma and its treatment.

Distinct profiles of multiple co-occurring symptoms in patients with gastrointestinal cancers receiving chemotherapy.

PURPOSE: Identify subgroups of gastrointestinal (GI) cancer patients with distinct multiple co-occurring symptom profiles and evaluate for differences among these subgroups in demographic and clinical characteristics and quality of life (QOL) outcomes. METHODS: Patients with GI cancers (n = 399) completed the Memorial Symptom Assessment Scale (MSAS) that was used to assess for multiple co-occurring symptoms. Latent class analysis (LCA) was used to identify subgroups of patients with distinct symptom profiles using symptom occurrence ratings. Differences in demographic and clinical characteristics and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: All Low (36.6%), Moderate (49.4%), and All High (14.0%) classes were identified. Compared to the All Low class, patients in the other two classes were significantly younger and were more likely to report depression and back pain. Compared to the other two classes, patients in the All High class had fewer years of education and a higher number of comorbidities. Significant differences were found among the three classes for comorbidity burden and total number of MSAS symptoms (i.e., All Low < Moderate < All High), as well as for performance status (i.e., All Low > Moderate > All High). A higher symptom burden was associated with poorer QOL outcomes. CONCLUSIONS: The first study to identify subgroups of patients with GI cancers based on distinct symptom profiles. LCA allowed for the identification of risk factors associated with a higher symptom burden. Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Illness Uncertainty in Patients Awaiting Liver Transplant.

Illness uncertainty is prevalent in patients awaiting liver transplant. We described high levels of illness uncertainty in these patients and examined relationships between uncertainty and person factors and the antecedents of uncertainty. Mishel uncertainty in illness scale was used to measure illness uncertainty. We used modes and interquartile range (IQR) to describe illness uncertainty levels in 115 patients. Multiple logistic and linear regression models estimated the associations of uncertainty with hypothesized antecedents. High total illness uncertainty score was reported by 15.6% of the patients. After adjusting for all variables, illness uncertainty was associated with two antecedents of uncertainty, low social well-being (OR = 0.816; p = .025) and low self-efficacy (OR = 0.931; p = .013). Complexity was negatively associated with social well-being; ambiguity and inconsistency were negatively associated with self-efficacy. One in seven patients experienced high illness uncertainty. Social well-being and self-efficacy were negatively related to illness uncertainty.