A quantitative study to assess cardiovascular risks among older African American women living in rural black belt areas of Alabama.

Limited information is available regarding the knowledge of Cardiovascular Disease (CVD) risk factors and the actual risk behaviors among African American (AA) older women living in rural areas of Alabama. A pilot study of needs assessment for CVD prevention behaviors was conducted to collect such data from rural AA women. This paper reports the quantitative part of the needs assessment of this pilot study. We recruited participants (N = 30) using convenience sampling. Data collection measures included: i) American Heart Association's CVD-related knowledge questionnaire, ii) Five Times Sit to Stand Test to measure dynamic balance and iii) Six minute walk test (6MWT) to assess exercise endurance iv) standard weighing scale to measure body weight and v) standard measurements scale to measure height.  Descriptive and inferential statistics were used to analyze the data. The majority (76%) of participants had hypertension (70%), diabetes (60%), poor balance (70%), and low exercise endurance (100%). Most of the participants had low knowledge related to CVD risk factors. This study demonstrated the need to conduct a large-scale study to assess knowledge related to heart health and the actual needs and preferences of these individuals. Conducting such a study would lay the foundation for developing a need-based program for these underserved individuals while incorporating their preferences and the strategies that would help engage them in a heart health intervention.

Leveraging digital health technologies in heart failure self-care interventions to improve health equity.

For patients with heart failure, self-care is crucial, but recommendations for self-care are often not adhered to. Digital health interventions have the potential to help patients improve their self-care and, ultimately, their health outcomes, but without careful examination, digital interventions may generate further inequality. In this study, we use a digital health equity framework to examine challenges and opportunities related to digital health interventions across many domains of influence that may affect health equity. We draw from our own experience in conducting a decentralized clinical trial with multiple sensors and apps to help patients with heart failure improve adherence to key self-care behaviors. Finally, we provide recommendations for leveraging digital health interventions in research and practice to address health equity.

Redesigning culturally tailored intervention in the precision health era: Self-management science context.

BACKGROUND: Nurse scientists have significantly contributed to health equity and ensuring cultural tailoring of interventions to meet unique needs of individuals. Methodologies for cultural tailoring of self-mangament interventions among marginalized populations have limitedly accommodated intersectionality and group heterogeneity when addressing health needs. PURPOSE: Identify methodological limitations in cultural tailoring of interventions among priority populations and issue recommendations on cultural elements that researchers can target to ensure valid cultural tailoring approaches. METHODS: Synthesis of literature on health equity, self-management, and implementation and dissemination research. FINDINGS: Among priority populations, intersectionality and group heterogeneity has made group-based cultural tailoring approaches less effective in eliciting desirable health outcomes. Precision health methodology could be useful for cultural tailoring of interventions due to the methodology's focus on individual-level tailoring approaches. DISCUSSION: We offer ways to advance health equity research using precision health approaches in cultural tailoring through targeting unique elements of culture and relevant psychosocial phenotypes.

Barriers to and Facilitators of Mental Health Help-Seeking Behaviors Among South Asian American College Students.

Despite the increasing size of the South Asian population in the United States, research on the mental health care wants and needs of this population is limited. The current study aimed to provide a better understanding of South Asian American college students' attitudes and behaviors with respect to professional help for psychological and mental health. Participants included 14 college students at a large central Texas university, aged at least 18 years and fluent in English, who identified ethnically as South Asian. Qualitative interviews held with participants included demographic questions. Five themes emerged from the interviews: Family Dynamics, Environment, University Resources, Access to Help, and Cultural Dynamics. High levels of mental illness, low levels of help-seeking, and unique identity interactions demonstrated a prevailing need for mental health support in South Asian American college students. Accessible mental health care in university settings can be a step toward providing appropriate mental health care for South Asian students most in need. [Journal of Psychosocial Nursing and Mental Health Services, 60(7), 32-38.].

Impact of COVID-19 on Heart Failure Self-Care: A Qualitative Study.

BACKGROUND: Difficulties in coping with and self-managing heart failure (HF) are well known. The COVID-19 pandemic may further complicate self-care practices associated with HF. OBJECTIVE: The aim of this study was to understand COVID-19's impact on HF self-care, as well as related coping adaptations that may blunt the impact of COVID-19 on HF health outcomes. METHODS: A qualitative study using phone interviews, guided by the framework of vulnerability analysis for sustainability, was used to explore HF self-care among older adults in central Texas during the late spring of 2020. Qualitative data were analyzed using directed content analysis. RESULTS: Seventeen older adults with HF participated (mean [SD] age, 68 [9.1] years; 62% female, 68% White, 40% below poverty line, 35% from rural areas). Overall, the COVID-19 pandemic had an adverse impact on the HF self-care behavior of physical activity. Themes of social isolation, financial concerns, and disruptions in access to medications and food indicated exposure, and rural residence and source of income increased sensitivity, whereas adaptations by healthcare system, health-promoting activities, socializing via technology, and spiritual connections increased resilience to the COVID-19 pandemic. CONCLUSIONS: The study's findings have implications for identifying vulnerabilities in sustaining HF self-care by older adults and empowering older adults with coping strategies to improve overall satisfaction with care and quality of life.

Lessons learned from eight teams: The value of pilot and feasibility studies in self-management science.

Designing and conducting effective intervention research is an important domain of nursing science. Nurse scientists have long recognized people with chronic conditions need effective self-management strategies across the lifespan, so they have led the way in establishing theoretical and practical grounds for the science of self-management. Guidance from pilot and feasibility research for self-management interventions is scarce. Documented exemplars of successes and failures in pilot and feasibility study designs are scant in the literature. The purpose of this paper is to illustrate methodological approaches using pilot and feasibility examples. To maximize collective lessons learned in self-management science study design, features of our pilot and feasibility research strategies that yielded both desirable and undesirable outcomes are described, analyzed, and paired with alternative solutions. A National Institute of Nursing Research P30 grant center, awarded grants to 8 pilot investigators to pilot self-management interventions. A wide variety of chronic conditions were addressed, including heart failure, chronic kidney disease, multiple sclerosis, diabetes, and HIV. The investigators provided their experiences of study implementation. Common themes across the studies were identified. There were four lessons learned from these studies: 1) maximize resources and develop enough evidence for subsequent studies; 2) embed patient-centered feasibility within implementation testing with new patient populations; 3) develop a flexible participant recruitment plan to allow for adjustments when unexpected barriers arise; and 4) define study-specific data collection procedures to demonstrate feasibility. Researchers conducting preliminary small-scale self-management intervention research must balance resources to develop and implement interventions to meet pilot and feasibility objectives.

Self-Regulation Strategies Among Community-Dwelling People Aging With Arthritis and Multimorbidity.

Self-regulation strategies of selection, optimization, and compensation (SR-SOC) have been found to predict arthritis self-efficacy and quality of life among community-dwelling people aging with arthritis and multimorbidity. The current study aimed to describe the health resources and chronic disabling symptom characteristics of community-dwelling people aging with arthritis and multimorbidity and investigate how these characteristics influence and predict SR-SOC strategies in managing arthritis multimorbidity after controlling for demographics and comorbidities. One hundred forty individuals aged >50 years completed surveys on demographics, comorbidities, health resources, symptoms, and SR-SOC strategy use frequencies. Descriptive statistics were used to describe sample characteristics. Correlations and multivariate hierarchical stepwise regressions were used to examine the associated characteristics and predictors for SR-SOC strategy use frequency. Lower health literacy, health care provider communication quality, and smaller social network were reported less often than arthritis in general. Significant predictors of SR-SOC strategy use were physical symptoms, health care provider communication quality, and age (p < 0.05). Better symptom management and health care provider communication quality could help promote self-regulation. [Journal of Gerontological Nursing, 47(1), 35-45.].

Health Literacy and Outcomes of a Community-Based Self-Help Intervention: A Case of Korean Americans With Type 2 Diabetes.

BACKGROUND: Although scientific reports increasingly document the negative impact of inadequate health literacy on health-seeking behaviors, health literacy's effect on health outcomes in patients with diabetes is not entirely clear, owing to insufficient empirical studies, mixed findings, and insufficient longitudinal research. OBJECTIVE: The aim of this study was to empirically examine underlying mechanisms of health literacy's role in diabetes management among a group of Korean Americans with Type 2 diabetes mellitus. METHODS: Data from a randomized clinical trial of a health literacy-focused Type 2 diabetes self-management intervention conducted during 2012-2016 in the Korean American community were collected at baseline and at 3, 6, 9, and 12 months. A total of 250 Korean Americans with Type 2 diabetes participated (intervention, 120; control, 130). Participants were first-generation Korean American immigrants. Health literacy knowledge was measured with the original Rapid Estimate of Adult Literacy in Medicine and the diabetes mellitus-specific Rapid Estimate of Adult Literacy in Medicine. Functional health literacy was measured with the numeracy subscale of the Test of Functional Health Literacy in Adults and the Newest Vital Sign screening instrument, which also uses numeracy. Primary outcomes included glucose control and diabetes quality of life. Multivariate analyses included latent variable modeling. RESULTS: A series of path analyses identified self-efficacy and self-care skills as significant mediators between health literacy and glucose control and quality of life. Education and acculturation were the most significant correlates of health literacy. DISCUSSION: Despite inconsistent findings in the literature, this study indicates that health literacy may indirectly influence health outcomes through mediators such as self-care skills and self-efficacy. The study highlights the importance of health literacy, as well as underlying mechanisms with which health literacy influences processes and outcomes of diabetes self-management.

The potential of digital phenotyping to advance the contributions of mobile health to self-management science.

Digital phenotyping consists of moment-by-moment quantification of behavioral data from individual people, typically collected passively from smartphones and other sensors. Within the evolving context of precision health, digital phenotyping can advance the use of mobile health -based self-management tools and interventions by enabling more accurate prediction for prevention and treatment, facilitating supportive strategies, and informing the development of features to motivate self-management behaviors within real-world conditions. This represents an advancement in self-management science: with digital phenotyping, nurse scientists have opportunities to tailor interventions with increased precision. In this paper, we discuss the emergence of digital phenotyping, the historical background of ecological momentary assessment, and the current state of the science of digital phenotyping, with implications for research design, computational requirements, and ethical considerations in self-management science, as well as limitations.

Perspectives and Experiences of Persons With Dementia With Advance Care Planning: An Integrative Literature Review.

OBJECTIVE: An integrative review of the literature on advance care planning (ACP) preferences and practices from the perspective of persons with dementia (PWDs) was conducted, both to learn how health-care providers might engage and empower PWDs in ACP during the early stages of dementia and to identify where researchers should focus future work to improve ACP in this population. METHODS: In November 2017, CINAHL, Legal Collection, PsycINFO, PubMed, and SocIndex were searched for empirical studies with PWDs as participants and ACP as a topic of interest. RESULTS: Eighteen articles, which sampled 1304 PWDs, were found, focusing on 4 domains: engagement in and correlates of ACP participation; ability and attitudes toward ACP participation; ACP interventions; and values and preferences for end of life (EOL). Demographics were reported for correlates of participation. Many PWDs held a neutral to negative view toward ACP, although values exploration exercises in interventions were well received. No intervention study reported significant findings for ACP participation. Most PWDs emphasized the importance of family at EOL. CONCLUSION: Research is needed with methodologically rigorous designs and theoretical frameworks that examine cognitive, psychosocial, and environmental factors influencing ACP attitudes, preferences, and behaviors among PWDs in order to improve engagement among this population.

Community-based game intervention to improve South Asian Indian Americans' engagement with advanced care planning.

Objective: Advance care planning (ACP) allows individuals to express their preferences for medical treatment in the event that they become incapable of making their own decisions. This study assessed the efficacy of a conversation game intervention for increasing South Asian Indian Americans' (SAIAs') engagement in ACP behaviors as well as the game's acceptability and cultural appropriateness among SAIAs. Design: Eligible community-dwelling SAIAs were recruited at SAIA cultural events held in central Texas during the summer of 2016. Pregame questionnaires included demographics and the 55-item ACP Engagement Survey. Played in groups of 3-5, the game consists of 17 open-ended questions that prompt discussions of end-of-life issues. After each game session, focus groups and questionnaires were used to examine the game's cultural appropriateness and self-rated conversation quality. Postintervention responses on the ACP Engagement Survey and rates of participation in ACP behaviors were collected after 3 months through phone interviews or online surveys. Data were analyzed using descriptive statistics, frequencies, and paired t-tests comparing pre/post averages at a .05 significance level. Results: Of the 47 participants, 64% were female, 62% had graduate degrees, 92% had lived in the U.S. for >10 years, 87% were first-generation immigrants, and 74% had no advance directive prior to the game. At the 3-month follow-up, 58% of participants had completed at least one ACP behavior, 42% had discussed end-of-life issues with loved ones, 15% did so with their healthcare providers, and 18% had created an advanced directive. ACP Engagement Survey scores increased significantly on all four of the process subscales by 3 months postgame. Conclusion: SAIA individuals who played a conversation game had a relatively high rate of performing ACP behaviors 3 months after the intervention. These findings suggest that conversation games may be useful tools for motivating people from minority communities to engage in ACP behaviors.

Recommendations for the Implementation of Telehealth in Cardiovascular and Stroke Care: A Policy Statement From the American Heart Association.

The aim of this policy statement is to provide a comprehensive review of the scientific evidence evaluating the use of telemedicine in cardiovascular and stroke care and to provide consensus policy suggestions. We evaluate the effectiveness of telehealth in advancing healthcare quality, identify legal and regulatory barriers that impede telehealth adoption or delivery, propose steps to overcome these barriers, and identify areas for future research to ensure that telehealth continues to enhance the quality of cardiovascular and stroke care. The result of these efforts is designed to promote telehealth models that ensure better patient access to high-quality cardiovascular and stroke care while striving for optimal protection of patient safety and privacy.

Using Unsupervised Machine Learning to Identify Subgroups Among Home Health Patients With Heart Failure Using Telehealth.

This study explored the use of unsupervised machine learning to identify subgroups of patients with heart failure who used telehealth services in the home health setting, and examined intercluster differences for patient characteristics related to medical history, symptoms, medications, psychosocial assessments, and healthcare utilization. Using a feature selection algorithm, we selected seven variables from 557 patients for clustering. We tested three clustering techniques: hierarchical, k-means, and partitioning around medoids. Hierarchical clustering was identified as the best technique using internal validation methods. Intercluster differences among patient characteristics and outcomes were assessed with either χ test or one-way analysis of variance. Ranging in size from 153 to 233 patients, three clusters displayed patterns that differed significantly (P < .05) in patient characteristics of age, sex, medical history of comorbid conditions, use of beta blockers, and quality of life assessment. Significant (P < .001) intercluster differences in number of medications, comorbidities, and healthcare utilization were also revealed. The study identified patterns of association between (1) mental health status, pulmonary disorders, and obesity, and (2) healthcare utilization for patients with heart failure who used telehealth in the home health setting. Study results also revealed a lack of prescription guideline-recommended heart failure medications for the subgroup with the highest proportion of older female adults.

Evidence on selection, optimization, and compensation strategies to optimize aging with multiple chronic conditions: A literature review.

The self-regulation strategies of selection, optimization, and compensation (SOC) can be effective in optimizing aging with multiple chronic conditions (MCC). Nineteen articles on the use and effects of SOC among older adults with chronic conditions were reviewed. The studies' quality, evaluated by the Mixed Methods Appraisal Tool, ranged from medium to high (Mean = 0.90, SD = 0.10). SOC were found to improve the symptom experience for older adults, resulting in better health outcomes such as increased daily living activities, subjective well-being, life success, fewer falls/sick days, and use of medication for pain control. For those with MCC, higher degree of disabilities, serious health events, and negative self-perceived aging undermined the relationships between SOC and long-term physical functioning, self-rated health, and life satisfaction. Aging can be optimized by identifying and improving older individuals' coping using SOC. Future studies should utilize better MCC measures for comorbidity and chronic disabling symptoms to investigate the influence of SOC on MCC-associated health outcomes.

Barriers to and Facilitators of South Asian Indian-Americans' Engagement in Advanced Care Planning Behaviors.

PURPOSE: To identify barriers to and facilitators of older South Asian Indian-Americans' (SAIAs') engagement in behaviors associated with advance care planning (ACP). METHODS: Using a descriptive qualitative design guided by the transcultural nursing assessment model, data were collected in focus groups of community-dwelling older SAIA participants, SAIA family caregivers, and SAIA physicians. A directed approach using predetermined coding categories derived from the Transcultural Nursing Assessment model and aided by NVivo 10 software (Melbourne, Australia) facilitated the qualitative data analysis. RESULTS: Eleven focus groups with 36 older SAIAs (61% female, 83% 70+ years old), 10 SAIA family caregivers, and 4 SAIA physicians indicated prior lack of awareness of ACP, good health status, lack of access to linguistically and health literacy-tailored materials, healthcare provider hesitation to initiate discussions on ACP, trust in healthcare providers' or oldest sons' decision making, busy family caregiver work routines, and cultural assumptions about filial piety and after-death rituals as major barriers to engaging in ACP. Introducing ACP using personal anecdotes in a neutral, group-based community setting and incentivizing ACP discussions by including long-term care planning were suggested as facilitators to engage in ACP. CLINICAL RELEVANCE: The study's findings will guide development of culturally sensitive interventions to raise awareness about ACP among SAIAs and encourage SAIA older adults to engage in ACP.

Reduced Toxicity Conditioning and Allogeneic Hematopoietic Progenitor Cell Transplantation for Recessive Dystrophic Epidermolysis Bullosa.

Recessive dystrophic epidermolysis bullosa is a severe, incurable, inherited blistering disease caused by COL7A1 mutations. Emerging evidence suggests hematopoietic progenitor cells (HPCs) can be reprogrammed into skin; HPC-derived cells can restore COL7 expression in COL7-deficient mice. We report two children with recessive dystrophic epidermolysis bullosa treated with reduced-toxicity conditioning and HLA-matched HPC transplantation.

A novel trial of topotecan, ifosfamide, and carboplatin (TIC) in children with recurrent solid tumors.

BACKGROUND: Ifosfamide, carboplatin, and etoposide (ICE) in children with refractory or recurrent solid tumors and lymphomas has resulted in good overall response rates (ORR). Etoposide, a topoisomerase-II inhibitor, however, has been associated with a significant increase in secondary leukemia. The rationale for substituting topotecan, a topoisomerase-I inhibitor, for etoposide in this regimen, a topoisomerase-II inhibitor, includes its limited toxicity profile and decreased leukemogenicity. Furthermore, topotecan in combination with both alkylators and platinating agents are additive and/or synergistic against a variety of solid tumors. PROCEDURE: Patients with relapsed/refractory solid tumors received ifosfamide (9 g/m2 ) and carboplatin (area under the curve: 3 mg/ml/min). Topotecan was also administered at 0.5 mg/m2 /day × 3 days (N = 12) and in a small cohort (N = 3) at 0.75 mg/m2 /day. RESULTS: Fifteen patients were entered onto study. Two patients developed seizures/encephalitis secondary to ifosfamide. One patient had dose-limiting thrombocytopenia secondary to TIC that resolved with supportive care. Patients received a median of three cycles (1-3) of TIC. Of the 14 evaluable patients for response, 4/14 had a complete response (CR), 2/14 had a partial response (PR), and 1/14 patients had stable disease (SD). The ORR (CR + PR) was 43%. CONCLUSION: TIC chemotherapy is feasible and tolerable in children and adolescents with refractory/recurrent solid tumors and lymphomas and results in a 43% excellent ORR in this poor-risk group of patients. A larger cohort of patients, especially in Wilms tumor and central nervous system (CNS) tumors, should be studied in the future to attempt to confirm these preliminary findings. Pediatr Blood Cancer 2015;62:274-278. © 2014 Wiley Periodicals, Inc.

A comparison of bronchoalveolar lavage versus lung biopsy in pediatric recipients after stem cell transplantation.

Bronchoalveolar lavage (BAL) has been a useful initial diagnostic tool in the evaluation of pulmonary complications after hematopoietic stem cell transplantation (HSCT); however, the diagnostic sensitivity, prevalence, and outcome after BAL versus lung biopsy (LB) in pediatric HSCT patients remains to be determined. We reviewed 193 pediatric HSCT recipients who underwent a total of 235 HSCTs. Sixty-five patients (34%) underwent a total of 101 BALs for fever, respiratory distress, and/or pulmonary infiltrates on chest radiograph and/or computed tomography scan. The 1-year probability of undergoing BAL was 43.0% after allogeneic stem cell transplantation (alloSCT) and 8.5% after autologous stem cell transplantation (autoSCT) (P = .001). Sixteen of the 193 patients (8%) patients underwent 19 LBs. The probability of undergoing LB at 1 year after HSCT was 9.3%. No grade III or IV adverse events related to either procedure were observed. Of the 101 BALs performed, 40% (n = 40) were diagnostic, with a majority revealing a bacterial pathogen. Among the 19 LBs performed, 94% identified an etiology. In multivariate analysis, myeloablative conditioning alloSCT conferred the highest risk of requiring a BAL (hazard ratio [HR],8.5; P = .0002). The probability of 2-year overall survival was 20.2% in patients who underwent BAL, 17.5% for patients who underwent biopsy, and 67.4% for patients who had neither procedure. In multivariate analysis, only the requirement of a BAL was independently associated with an increased risk of mortality (HR, 2.96; P < .0001). In summary, in this cohort of pediatric HSCT recipients, BAL and LB were used in approximately 35% and 8% of pediatric HSCTs with diagnostic yields of approximately 40% and 94%, respectively, and were both associated with poor long-term outcomes.

Adapting heart failure guidelines for nursing care in home health settings: challenges and solutions.

BACKGROUND: Nurses provide most of home health services for patients with heart failure, and yet there are no evidence-based practice guidelines developed for home health nurses. PURPOSE: The purpose of this article was to review the challenges and solutions for adapting generally available HF clinical practice guidelines to home health nursing. METHODS: Appropriate HF guidelines were identified and home health nursing-relevant guidelines were extracted by the research team. In addition, a team of nursing academic and practice experts evaluated the extracted guidelines and reached consensus through Delphi rounds. RESULTS: We identified 172 recommendations relevant to home health nursing from the American Heart Association and Heart Failure Society of America guidelines. The recommendations were divided into 5 groups (generic, minority populations, normal ejection fraction, reduced ejection fraction, and comorbidities) and further subgroups. Experts agreed that 87% of the recommendations selected by the research team were relevant to home health nursing and rejected 6% of the selected recommendations. Experts' opinions were split on 7% of guideline recommendations. Experts mostly disagreed on recommendations related to HF medication and laboratory prescription as well as HF patient assessment. These disagreements were due to lack of patient information available to home health nurses as well as unclear understanding of scope of practice regulations for home health nursing. After 2 Delphi rounds over 8 months, we achieved 100% agreement on the recommendations. The finalized guideline included 153 recommendations. CONCLUSIONS: Guideline adaptation projects should include a broad scope of nursing practice recommendations from which home health agencies can customize relevant recommendations in accordance with available information and state and agency regulations.

Social marketing and the challenges of participant recruitment.

Recruitment of research participants often has not obtained a desired sample size, thereby becoming a major problem inhibiting investigators' ability to adequately test the specified hypotheses. Social marketing with its four Ps, originally developed by the business world to sell products and adapted for public health initiatives, is proposed as a dynamic comprehensive conceptual framework to apply marketing principles and practices to enhance participant recruitment. Applying a social marketing approach to research recruitment would require initial investigation to understand the motivations of the target audience in regard to research participation, and continued research throughout the main project to adapt the recruitment efforts as limitations arise. Additional funding would be needed for successful social marketing research recruitment programs to be systematically implemented and evaluated as part of research projects. In this paper, we define social marketing concepts, briefly review the available literature supporting social marketing applied to recruitment for research studies, and consider ethical issues that may arise when using a social marketing approach.

Recruitment for research projects has been challenging, putting studies at risk of not being able to adequately test a priori hypotheses. Social marketing, an adaptation of traditional marketing principles and practices, may provide a solution. Marketing was developed to sell commercial products to consumers, and the strategies and practices therein could be applied to selling participation in the "intervention" (the health program) to "end users" (participants). The four Ps, product, price, place, and promotion, are the conceptual elements considered in a marketing plan. Applying a social marketing approach to recruitment for research projects has been demonstrated to be successful in a small number of cases. Implementing this approach would require preimplementation research to specify the key characteristics of the target audience; continuous monitoring of recruitment success during the research to assess changes in strategies, as needed; and enhanced funding to accommodate the additional research within an expanded early project time frame.