Publications

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Purpose: Gender affirmation lessens mental health disparities among transgender and gender nonbinary (TGNB) persons. However, the concept of what it means to be affirmed in one's gender has not been fully explored, nor has the impact of gender affirmation on other health indicators been determined. The purpose of this study was to explore the meaning of gender affirmation among a sample of TGNB persons. Methods: This qualitative, narrative inquiry study consisted of individual, in-depth, semi-structured interviews with a convenience sample of 20 TGNB persons. Descriptive content analysis was conducted to discover themes. Results: This study identified salient themes regarding the multiple levels of affirmation (including internal, external and societal) needed to achieve the overall goal of living an optimal life described as “being seen, heard and even celebrated” as TGNB. Conclusion: Results of this study have clinical, educational, research, and policy implications. Future research should explore the impact of gender affirmation on important health indicators in the TGNB community, differences in the experiences and needs among subgroups of TGNB persons, and the potential impact of nurses on the health experience of TGNB persons across the spectrum of transition.

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Objectives: This study aimed to examine whether the loss of spouse had similar impacts on psychological well-being as the loss of the only child, and whether the presence of one mitigated the absence of the other. Methods: We used data from a 2013 survey conducted in Shanghai, China. The sample included 1,200 older adults aged 60+, and 200 adults aged 45+ who lost their only child. Psychological well-being consisted of three dimensions: depression, loneliness, and life satisfaction. We applied logistic regression models to assess the impact of loss of spouse or children on psychological well-being. We further tested whether the impact differed by gender and whether social support mediated the relationship. Results: Participants who have at least one living child but lost their spouse had less psychological distress than those who have a living spouse but lost their only child. This effect appeared to be stronger in women than in men. Social support mediated the relationship between bereavement and loneliness among women. Conclusion: The findings suggested the loss of the only child is a more devastating event than the loss of spouse in Chinese adults. The loss of the only child is a major chronic stressor that has cumulative negative effect on psychological well-being.

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Background: The COVID-19 pandemic put extreme stress on an already strained healthcare workforce. Suboptimal work organization, exacerbated by the pandemic, is associated with poor worker, patient, and organizational outcomes. However, there are limited qualitative studies exploring how the interconnections of work organization factors related to shift work, sleep, and work stress influence registered nurses and their work performance in the United States. Purpose: We sought to understand how nurses perceive work organization factors that impact their performance. Knowledge in this area could direct efforts to implement policies and design tailored interventions to support nurses in the post-pandemic period. Methods: We used a qualitative descriptive design with the Work, Stress, and Health framework as an overarching guide to understand the interconnectedness of work organization factors, work stress, and outcomes. Participants were randomly assigned to one of two anonymous, asynchronous virtual focus groups (i.e., threaded discussion boards) in 2019. Registered nurses (N = 23) working across the United States were recruited and engaged until data saturation was achieved. Directed content analysis was used to analyze the data. Results: Findings aligned with the Work, Stress, and Health framework and revealed three themes: (1) “Our Voice Should Matter” (nurses’ desire to have their voices heard in staffing policies); (2) “Tired But Wired” (the harmful cycle of work stress, rumination, and poor sleep); and (3) “We're Only Human” (nurses’ physical, emotional, and mental exhaustion linked to critical performance impairments). Conclusion: These findings underscore that high work stress and poor sleep were present before the pandemic and impacted nurses’ perceptions of their performance. As leaders look forward to recovery and work redesign efforts, these findings can guide decision-making and resource allocation for optimal nurse, patient, and organization outcomes.

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Background The 2016 WHO Standards for improving quality of maternal and newborn care in health facilities established patient experience of care as a core indicator of quality. Global health experts have described loss of autonomy and disrespect as mistreatment. Risk of disrespect and abuse is higher when patient and care provider opinions differ, but little is known about service users experiences when declining aspects of their maternity care. Methods To address this gap, we present a qualitative content analysis of 1540 written accounts from 892 service users declining or refusing care options throughout childbearing with a large, geographically representative sample (2900) of childbearing women in British Columbia who participated in an online survey with open-ended questions eliciting care experiences. Findings Four themes are presented: 1) Contentious interactions: "I fought my entire way", describing interactions as fraught with tension and recounting stories of "fighting"for the right to refuse a procedure/intervention; 2) Knowledge as control or as power: "like I was a dim girl", both for providers as keepers of medical knowledge and for clients when they felt knowledgeable about procedures/interventions; 3) Morbid threats: "do you want your baby to die?", coercion or extreme pressure from providers when clients declined interventions; 4) Compliance as valued: "to be a 'good client'", recounting compliance or obedience to medical staff recommendations as valuable social capital but suppressing desire to ask questions or decline care. Conclusion We conclude that in situations where a pregnant person declines recommended treatment, or requests treatment that a care provider does not support, tension and strife may ensue. These situations deprioritize and decenter a woman's autonomy and preferences, leading care providers and the culture of care away from the principles of respect and person-centred care.

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Adult day centers (ADCs) are nonresidential settings that support the health and social needs of vulnerable older adults. Due to ADCs’ congregate nature and participants’ compromised health status, many ADCs have been forced to close during the COVID-19 pandemic. It is unknown how closures have impacted service delivery at ADCs. Guided by the Resiliency Activation Framework, we (a) identified consequences resulting from closures of ADCs during the COVID-19 pandemic and (b) described factors that have enabled the ADC community to remain resilient in the wake of challenges brought on by the pandemic. We conducted 2 focus groups in California (n = 12), and individual interviews with ADC staff members (n = 8) in 7 other states. The results of a directed content analysis revealed perceived declines in physical, cognitive, and mental health of ADC users and increased caregiver strain. Access to human, social, economic, and political capital were essential for supporting ADCs in buffering the impacts of the pandemic on the older adults they serve but were not consistently available. Research is urgently needed that quantifies the impacts of the pandemic on ADC users and their caregivers to inform policy and advocacy efforts in the wake of the pandemic.

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Background/Objectives: COVID-19 required rapid innovation throughout the healthcare system. Home-based primary care (HBPC) practices faced unique challenges maintaining services for medically complex older populations for whom they needed to adapt a traditionally hands-on, model of care to accommodate restrictions on in-person contact. Our aim was to determine strategies used by New York City (NYC)-area HBPC practices to provide patient care during the first wave of the COVID-19 pandemic with the goal of informing planning and preparation for home-based practices nationwide. Design: Cross-sectional qualitative design using semi-structured interviews. Setting: HBPC practices in the NYC metro area during spring 2020. Participants: HBPC leadership including clinical/medical directors, program managers, nurse practitioners/nursing coordinators, and social workers/social work coordinators (n = 13) at 6 NYC-area practices. Measurements: Semi-structured interviews explored HBPC practices' COVID-19 care delivery challenges, adaptations, and advice for providers. Interviewers probed patient care, end-of-life care, telehealth, community-based services and staffing. Interviews were recorded and transcribed. Data were analyzed through a combined inductive and deductive thematic approach. Results: Participants described care delivery and operational adaptations similar to those universally adopted across healthcare settings during COVID-19, such as patient outreach and telehealth. HBPC-specific adaptations included mental health services for patients experiencing depression and isolation, using multiple modalities of patient interactions to balance virtual care with necessary in-person contact, strategies to maintain patient trust, and supporting team connection of staff through daily huddles and emotional support during the surge of deaths among long-standing patients. Conclusion: NYC-area HBPC providers adapted care delivery and operations rapidly during the height of the COVID-19 pandemic. Keeping older, medically complex patients safe in their homes required considerable flexibility, transparency, teamwork, and partnerships with outside providers. As the pandemic continues to surge around the United States, HBPC providers may apply these lessons and consider resources needed to prepare for future challenges.

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Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in New York City including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call schedules, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.

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The rapid deployment of video visits during COVID-19 may have posed unique challenges for home-based primary care (HBPC) practices due to their hands-on model of care and older adult population. This qualitative study examined provider perceptions of video visits during the first wave of the COVID-19 crisis in New York City (NYC) through interviews with HBPC clinical/medical directors, program managers, nurse practitioners/nurse managers, and social work managers (n = 13) at six NYC-area practices. Providers reported a combination of commercial (health system-supported) and consumer (e.g., FaceTime) technological platforms was essential. Video visit benefits included triaging patient needs, collecting patient information, and increasing scheduling capacity. Barriers included cognitive and sensory abilities, technology access, reliance on caregivers and aides, addressing sensitive topics, and incomplete exams. Effectively integrating video visits requires considering how technology can be proactively integrated into practice. A policy that promotes platform flexibility will be crucial in fostering video integration.

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Background: A substantial number of new HIV infections in sub-Saharan Africa occur within stable couples. Biomedical prevention (pre-exposure prophylaxis, PrEP) and treatment (antiretroviral therapy, ART) can provide benefits to sexual partners and can be used to prevent infection within HIV serodiscordant couples. However, research is typically focused on individuals, not dyads, even when the intervention may directly or indirectly impact sexual partners. Gaps remain in understanding best practices for recruitment, informed consent, and intervention implementation in studies involving HIV prevention and treatment among heterosexual serodiscordant couples. This qualitative study was undertaken to understand and describe decision-making and dyadic-level influence among members of serodiscordant couples regarding (1) participation in a dyadic-based research study involving HIV self-testing and access to PrEP, and (2) utilization of PrEP and ART. Methods: This qualitative study was nested within an observational cohort study assessing the acceptability of home-based couples’ HIV self-testing and uptake of dyadic care for serodiscordant couples involving facilitated referral for HIV-positive partners and access to PrEP for HIV-negative partners. Semi-structured in-depth interviews were conducted among a subset of study participants (n = 22) as well as individuals involved in serodiscordant relationships who chose not to participate (n = 9). Interviews focused on couples’ decision-making regarding study participation and dyadic-level influence on medication use. Interviews were transcribed verbatim and translated from Kiswahili into English. Data were analyzed using thematic analysis. Results: Three major themes were identified: (1) HIV as “two people’s secret” and the elevated role of partner support in serodiscordant relationships; (2) the intersectional role of HIV-status and gender on decision-making; (3) the relational benefits of PrEP, including psychosocial benefits for the couple that extend beyond prevention. Conclusions: The study found that couples made joint decisions regarding study participation and uptake of HIV-related medication. Relational autonomy and dyadic-level influence should be considered within research and programs involving HIV serodiscordant couples.

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Editor's note: This article is by 22 nursing gerontology experts who are all advocates of nursing home reform. They are listed at the end of this article.

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Background: The contributions of student laboratory experiences to student learning in pre-licensure science classes are not well understood. Despite the generally accepted premise that traditional hands-on laboratory experiences are essential to knowledge construction and superior to non-traditional online experiences, the literature suggests that both experiences promote equal levels of student learning. Objectives: We compared academic performance of students enrolled in a Human Anatomy and Physiology II course with hands-on laboratory to that of students enrolled in the same course but with online laboratory by examining several measures of student learning. Design and participants: This was a quasi-experimental study of undergraduate students aged 18–22 years enrolled in equivalent human anatomy and physiology courses on two separate campuses of a private research university in the United States. One course was associated with hands-on laboratory while the other course was associated with online laboratory. Methods: The Human Anatomy and Physiology Society standardized exam was administered as a pre-test/post-test assessment at the beginning and end of the academic year. Lecture exam scores, laboratory exam scores, and overall course grades served as measures of student learning. Comparisons of student performance between hands-on and online laboratory groups were made using t-tests. Results: Student performance on the pre-test and overall course grades from Human Anatomy and Physiology (part I) were not different between groups. While students in the online lab group did earn significantly higher Human Anatomy and Physiology (part II) course grades, their performance on lecture exams, laboratory exams, and the post-test assessment was not different. Conclusions: Students in a pre-licensure prerequisite course with online laboratory demonstrated mastery of basic science concepts equal to or better than students in the same course with traditional hands-on laboratory. Online laboratory experiences may represent an appropriate, accessible and cost-effective teaching modality for pre-licensure coursework.

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HIV coinfection is associated with more rapid liver fibrosis progression in hepatitis C (HCV) infection. Recently, much work has been done to improve outcomes of liver disease and to identify targets for pharmacological intervention in coinfected patients. In this study, we analyzed clinical data of 1,858 participants from the Women’s Interagency HIV Study (WIHS) to characterize risk factors associated with changes in the APRI and FIB-4 surrogate measurements for advanced fibrosis. We assessed 887 non-synonymous single nucleotide variants (nsSNV) in a subset of 661 coinfected participants for genetic associations with changes in liver fibrosis risk. The variants utilized produced amino acid substitutions that either altered an N-linked glycosylation (NxS/T) sequon or mapped to a gene related to glycosylation processes. Seven variants were associated with an increased likelihood of liver fibrosis. The most common variant, ALPK2 rs3809973, was associated with liver fibrosis in HIV/HCV coinfected patients; individuals homozygous for the rare C allele displayed elevated APRI (0.61, 95% CI, 0.334 to 0.875) and FIB-4 (0.74, 95% CI, 0.336 to 1.144) relative to those coinfected women without the variant. Although warranting replication, ALPK2 rs3809973 may show utility to detect individuals at increased risk for liver disease progression.

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Irritable bowel syndrome (IBS) is associated with depressive symptoms, but this relationship is poorly understood. Emerging research suggests that gut microbes are associated with symptoms in persons with IBS. The purpose of this integrative review is to describe the state of the science of the microbial relationship between IBS and depressive symptoms. PubMed, CINAHL, PsychINFO, and Web of Science were searched using “irritable bowel syndrome,” “microbiome,” “depression,” and related terms. Included articles were published in peer reviewed journals in English from 2009 to 2018. Studies on inflammatory bowel conditions, extra-intestinal microbiomes, or animal models were excluded. Fourteen quantitative studies met inclusion criteria, were critically appraised, and were analyzed using the Whittemore and Knafl method. Analysis revealed a consistently lower microbial biodiversity and lower proportions of Bifidobacterium and Lactobacillus in persons with IBS and co-occurring depressive symptoms. Inclusion of participants with moderate or greater depressive symptoms scores distinguished the studies which reported microbe differences in depressive symptoms. The results of this integrative review underscore the need for studies with larger samples and inclusion of a larger range of depressive symptoms guided by an overarching conceptual framework, such as the biopsychosocial ecology framework. This effort needs to be combined with longitudinal designs in order to identify related microbial markers.

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Background: Self-care is essential to cardiovascular disease (CVD) health outcomes, but may be challenging for older working adults. Objective: Describe self-care and the relationship of work-related characteristics to self-care among older workers with CVD. Methods: Convergent mixed methods design (n = 108) assessed self-care, organization of work, job-level and clinical factors; qualitative data (n = 40) explored self-care and working. Data integrated in the final analytic phase. Results: Sixty-eight percent reported adequate self-care maintenance (SC-CHDI maintenance ≥70); only 22% had adequate self-care management (SC-CHDI management ≥ 70). Controlling for physical capacity, work-related factors explained 22% variance in self-care maintenance; physical capacity was only significant determinant of self-care management. Individuals with poor self-care described low job control, job stress and work-life imbalance that interfered with routine self-care. Individuals with poor self-care management reported “feeling stressed out” and “extreme fatigue” attributed to their job. Conclusions: Interventions targeting self-care, stress management and work-life balance among older workers with CVD are needed.

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Background: Prior studies have documented associations between preterm birth and severe maternal morbidity (SMM) but the prevalence and correlates of dual burden are not adequately understood, despite significant family implications. Purpose: To describe the prevalence and correlates of the dual burden of SMM and preterm birth and to understand profiles of SMM by dual burden of preterm birth. Approach: This retrospective cohort study included all California live births in 2007-2012 with gestations 20-44 weeks and linked to a birth cohort database maintained by the California Office of Statewide Health Planning and Development (n = 3,059,156). Dual burden was defined as preterm birth (<37 weeks) with severe maternal morbidity (SMM, defined by Centers for Disease Control). Predictors for dual burden were assessed using Poisson logistic regression, accounting for hospital variance. Results: Rates of preterm birth and SMM were 876 and 140 per 10,000 births, respectively. The most common indications of SMM both with and without preterm birth were blood transfusions and a combination of cardiac indications. One-quarter of women with SMM experienced preterm birth with a dual burden rate of 37 per 10,000 births. Risk of dual burden was over threefold higher with cesarean birth (primiparous primary aRR = 3.3, CI = 3.0-3.6; multiparous primary aRR = 8.1, CI = 7.2-9.1; repeat aRR = 3.9, CI = 3.5-4.3). Multiple gestation conferred a six-fold increased risk (aRR = 6.3, CI = 5.8-6.9). Women with preeclampsia superimposed on gestational hypertension (aRR = 7.3, CI = 6.8-7.9) or preexisting hypertension (aRR = 11.1, CI = 9.9-12.5) had significantly higher dual burden risk. Significant independent predictors for dual burden included smoking during pregnancy (aRR = 1.5, CI = 1.4-1.7), preexisting hypertension without preeclampsia (aRR = 3.3, CI = 3.0-3.7), preexisting diabetes (aRR = 2.6, CI = 2.3-3.0), Black race/ethnicity (aRR = 2.0, CI = 1.8-2.2), and prepregnancy body mass index <18.5 (aRR = 1.4, CI = 1.3-1.5). Conclusions: Dual burden affects 1900 California families annually. The strongest predictors of dual burden were hypertensive disorders with preeclampsia and multiparous primary cesarean.

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Adult day service centers (ADSCs) provide community-based long-term care, including meals, to racially diverse older adults, 47% of whom have dementia and consequently experience elevated nutritional risk. We examine nutritional behaviors for Chinese and Vietnamese persons living with dementia (PLWD) in ADSCs and evaluate the extent to which ADSCs provide person-centered nutritional care. Multi-stakeholder interviews were conducted. Data were coded using Dedoose and analyzed using Braun and Clarke’s six-step method. The Model for the Provision of Good Nutritional Care in Dementia guided analysis. Barriers to food intake included distracting meal environment, rigid mealtimes, and excessively restrictive diets. Conversely, peer relationships, culturally tailored meals and celebrations, and consistent staff assisting with feeding benefited PLWD. ADSCs can support healthy nutritional behaviors and quality of life among PLWD through person-centered nutritional care. To optimize nutritional services, further exploration is needed with respect to the ADSC environment, users’ culture and ethnicity, and liberalized diets for PLWD.

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Purpose: Recruitment and retention of adolescents and young adults (AYAs) in couple-based HIV prevention research can be difficult. This study’s primary objective is to identify factors that influenced Black and Latino AYAs to participate in couple-based HIV/STI prevention research. Design: In-depth, semi-structured qualitative interviews. Setting: Face-to-face interviews with couples recruited from the South Bronx, New York. Participants: Twenty-three heterosexual couples (46 individuals) aged 16-28 (M = 20.1, SD = 3.01). Methods: Participants completed 60 to 90-minute individual and dyadic interviews. All interviews were audio-recorded and transcribed. Thematic analysis was conducted to identify key themes. Results: Two levels of influence emerged from participants’ interviews regarding their reasons for study participation: 1) individual factors (interest in the study topic, study incentives, opportunity to help their community, and opportunity to learn something new), 2) interpersonal factors (positive interactions with the research team, partner’s desire to participate and relationship strengthening). There were key differences by gender and recruitment order. Conclusion: Black and Latino AYAs report multiple reasons for participating in couple-based research. Highlighting the benefits of study participation to themselves, their relationships, and their communities may be an important strategy for engaging AYAs in couple-based research.

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Medical professionalism is more than a demonstration of individual competencies. Becoming a member of the medical profession is not only about passing a set of milestones but also about embodying the values, behaviors, and identity of a physician through a process of professional identity formation. The major frameworks for medical professionalism, the process of professionalization, and the importance of socialization in medicine are discussed. The reader is encouraged to reflect on who they are and who they want to become. Thus, this chapter provides a roadmap to medical professionalism. Physicians have a fiduciary duty to act in the best interest of their patients and embrace lifelong learning.

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Background and Objectives: The Nurses Improving Care for Healthsystem Elders (NICHE) is a nurse-led education and consultation program designed to help health care organizations improve the quality of care for older adults. To conduct a scoping review of the evidence associated with the NICHE program to (a) understand how it influences patient outcomes through specialized care of the older adult and (b) provide an overview of implementation of the NICHE program across organizations as well as its impact on nursing professionals and the work environment. Research Design and Methods: Six databases were searched to identify NICHE-related articles between January 1992 and April 2019. After critical appraisal, 43 articles were included. Results: Four thematic categories were identified including specialized older adult care, geriatric resource nurse (GRN) model, work environment, and NICHE program adoption and refinement. Specialized older adult care, a key feature of NICHE programs, resulted in improved quality of care, patient safety, lower complications, and decreased length of stay. The GRN model emphasizes specialized geriatric care education and consultation. Improvements in the geriatric nurse work environment as measured by perceptions of the practice environment, quality of care, and aging-sensitive care delivery have been reported. NICHE program adoption and refinement focuses on the methods used to improve care, implementation and adoption of the NICHE program, and measuring its impact. Discussion and Implications: The evidence about the NICHE program in caring for older adults is promising but more studies examining patient outcomes and the impact on health care professionals are needed.

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The situation-specific theory of heart failure (HF) self-care, developed in 2008 and revised in 2016 is used worldwide by clinicians and researchers. Central to this theory is the description of self-care as a naturalistic decision-making process involving the choice of behaviors that maintain physiologic stability (maintenance), symptom perception, and the response to symptoms when they occur (management).