Publications

Abstract

Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services.

Abstract

This month we focus on the role of the NICHE Coordinator, who leads NICHE program activities to advance the use of evidence-based practices that improve the quality and safety of care delivered to older adults in healthcare delivery settings. We present a new leadership development class for NICHE Coordinators to enhance their overall effectiveness with implementing the NICHE practice model in their organizations.

Abstract

Background: Home-based care may cover anything from 24-hour support for people with a disability, to short-term post-discharge care, or to periodic assistance with simple tasks such as domestic aid for frail older people. The process can be complex and time-consuming and requires coordination between the individual, their family caregivers, and healthcare providers. Receiving care at home can also lead to social isolation as older people may have limited opportunities for social interaction. This study aimed to investigate older people’s experience and related factors while receiving home-based long-term care services. Methods: A qualitative study was used. Face-to-face individual interviews were conducted with people who were receiving nursing care in their homes (N = 17) and analyzed through thematic analysis. Results: Analysis of interview data resulted in the identification of three major themes that captured participants’ personal experiences regarding long-term care in the home: (1) Challenges faced by older people receiving long-term care at home; (2) The impact of home care services on people’s social well-being; and (3) Older people’s contradictory emotions regarding care delivery. Conclusions: Findings of the study revealed that the most important and challenging factors in home care from the perspective of older people were social well-being, religious needs, and physical needs. They considered the nurses who provided these services as family members and the most significant helpers in their daily activities. Participants expressed a desire for more services in the future.

Abstract

Background: Oral frailty has become a worldwide problem among older adults. Although researchers have conducted various studies on oral frailty, its definition remains controversial. Purpose: To clarify the concept of oral frailty. Methods: Online databases PubMed, Web of Science, CINAHL, Cochrane Library, ProQuest, China National Knowledge Infrastructure (CNKI), China Science and Technology Journal Database (VIP), and Wanfang database were searched from inception to September 20, 2023. The reference lists of relevant studies were searched manually. Eligible articles, theses, and books were analyzed using Walker & Avant’s concept analysis model. Results: The attributes of oral frailty were abnormal oral structure and/or decline in multi-faceted oral function and coexisting decline in physical, cognitive and social functions. Its antecedents were aging, social frailty, and severe periodontitis, whereas its consequences were decline in physical health and mental health, social withdrawal, lower quality of life and systemic frailty. Conclusion: Oral frailty could result in worse conditions among older adults physically, psychologically and socially. Tools based on the concept analysis need to be developed to comprehensively assess oral frailty.

Abstract

In the wake of the COVID-19 pandemic and recent state-level practice regulation changes, one health system sought innovative strategies to prepare new to practice registered nurses (RNs) to directly enter the specialty of emergency nursing. The emergency department (ED) nurse leaders and educators collaborated with an affiliated college of nursing to develop an academic–practice partnership for prelicensure students interested in emergency nursing. The program included both classroom-based instruction and clinical learning in the health system’s EDs. A descriptive study was completed to evaluate the program participants’ opinions regarding the classroom-based and clinical learning experiences during this program, as well as their plans for employment as RNs.

Abstract

Background: Tissue-based gene expression (genomic) tests provide estimates of prostate cancer aggressiveness and are increasingly used for patients considering or engaged in active surveillance. However, little is known about patient experiences with genomic testing and its role in their decision-making. Methods: We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- or favourable-intermediate-risk prostate cancer managed with active surveillance. We purposively sampled to include patients who received biopsy-based genomic testing as part of clinical care. The interview guide focused on experiences with genomic testing during patients' decision-making for prostate cancer management and understanding of genomic test results. We continued interviews until thematic saturation was reached, iteratively created a code key and used conventional content analysis to analyse data. Results: Participants' (n = 20) mean age was 68 years (range 51–79). At initial biopsy, 17 (85%) had a Gleason grade group 1, and 3 (15%) had a grade group 2 prostate cancer. The decision to undergo genomic testing was driven by both participants and physicians' recommendations; however, some participants were unaware that testing had occurred. Overall, participants understood the role of genomic testing in estimating their prostate cancer risk, and the test results increased their confidence in the decision for active surveillance. Participants had some misconceptions about the difference between tissue-based gene expression tests and germline genetic tests and commonly believed that tissue-based tests measured hereditary cancer risk. While some participants expressed satisfaction with their physicians' explanations, others felt that communication was limited and lacked sufficient detail. Conclusion: Patients interact with and are influenced by the results of biopsy-based genomic testing during active surveillance for prostate cancer, despite gaps in understanding about test results. Our findings indicate areas for improvement in patient counselling in order to increase patient knowledge and comfort with genomic testing.

Abstract

Background: Philippines is one of the top ten countries of birth among individuals with tuberculosis in New York City (NYC). The NYC Health Department (HD) screened Filipino-born New Yorkers for latent TB infection (LTBI), but few of those tested positive completed evaluation and treatment. Objective: To increase the proportion of Filipinos with a positive QuantiFeron-TB Gold Plus (QFT-Plus) complete LTBI evaluation and treatment. Methods: Nine community-based LTBI screening events were conducted during September-December 2021. Patients with positive QFT-Plus results were offered no-cost LTBI evaluation and treatment at HD Chest Clinic. The HD engaged culturally- and linguistically-competent Filipino patient navigators (PN) to facilitate LTBI evaluation and treatment. Results: Of 77 Filipinos screened, 17 (22%) tested positive. Fourteen (82%) were evaluated for LTBI; eight of the 14 (57%) completed LTBI treatment. Conclusions: Pairing patients with culturally- and linguistically- competent Filipino PNs contributed to an increase in the proportion of Filipinos with a positive QFT-Plus who completed LTBI evaluation and treatment. TB prevention programs may wish to consider PNs in LTBI patient care.

Abstract

Background: Health-related decision-making is a complex process given the variability of treatment options, conflicting treatment plans, time constraints and variable outcomes. This complexity may result in patients experiencing decisional regret following decision-making. Nonetheless, literature on decisional regret in the healthcare context indicates inconsistent characterization and operationalization of this concept. Aim(s): To conceptually define the phenomenon of decisional regret and synthesize the state of science on patients' experiences with decisional regret. Design: A concept analysis. Methods: Rodgers' evolutionary method guided the conceptualization of this review. An interdisciplinary literature search was conducted from 2003 until 2023 using five databases, PubMed, CINAHL, Embase, PsycINFO and Web of Science. The search informed how the concept manifested across health-related literature. We used PRISMA-ScR checklist to guide the reporting of this review. Results: Based on the analysis of 25 included articles, a conceptual definition of decisional regret was proposed. Three defining attributes underscored the negative cognitive-emotional nature of this concept, post-decisional experience relating to the decision-making process, treatment option and/or treatment outcome and an immediate or delayed occurrence. Antecedents preceding decisional regret comprised initial psychological or emotional status, sociodemographic determinants, impaired decision-making process, role regret, conflicting treatment plans and adverse treatment outcomes. Consequences of this concept included positive and negative outcomes influencing quality of life, health expectations, patient-provider relationship and healthcare experience appraisal. A conceptual model was developed to summarize the concept's characteristics. Conclusion: The current knowledge on decisional regret is expected to evolve with further exploration of this concept, particularly for the temporal dimension of regret experience. This review identified research, clinical and policy gaps informing our nursing recommendations for the concept's evolution. No Patient or Public Contribution: This concept analysis examines existing literature and does not require patient-related data collection. The methodological approach does not necessitate collaboration with the public.

Abstract

Objectives: A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers. Method: A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables—caregiving competence, loneliness, caregiver burden, and depressive symptoms—were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]. Results: The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups. Conclusion: The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Abstract

Background: Although secure firearm storage can prevent firearm injury and death, secure storage is relatively rare. This tendency may be driven in part by a perceived lack of utility for secure storage in preventing suicide and other gun violence-related outcomes. Method: We recruited a large (n = 3510) representative sample of residents from five US states and assessed the degree to which those who do and do not store their firearms securely perceive different utility in specific firearm storage practices for suicide prevention. To test for specificity, we examined if those differences hold when considering unintentional shooting and firearm theft prevention. Results: Those who currently store their firearms unsecured reported lower perceived utility in several firearm storage practices, particularly for suicide and theft prevention. Conclusions: Our findings highlight that a lack of perceived utility in secure firearm storage may partially drive unsecure firearm storage. Efforts to promote secure storage must address this misperception.

Abstract

Introduction: Perinatal Mood and Anxiety Disorders (PMADs) are the most common complications during the perinatal period. There is limited understanding of the gaps between need and provision of comprehensive health services for childbearing people, especially among racialized populations. Methods: The Giving Voice to Mothers Study (GVtM; n = 2700), led by a multistakeholder, Steering Council, captured experiences of engaging with perinatal services across the United States, including access, respectful care, and health systems’ responsiveness. A patient-designed survey included variables to assess relationships between race, care provider type (midwife or doctor), and needs for psychosocial health services. We calculated summary statistics and tested for significant differences across racialized groups, subsequently reporting odds ratios (ORs) for each group. Results: Among all respondents, 11% (n = 274) reported unmet needs for social and mental health services. Indigenous women were three times as likely to have unmet needs for treatment for depression (OR [95% confidence interval, CI]: 3.1 [1.5–6.5]) or mental health counseling (OR [95% CI]: 2.8 [1.5–5.4]), followed by Black women (OR [95% CI]: 1.8 [1.2–2.8] and 2.4 [1.7–3.4]). Odds of postpartum screening for PMAD were significantly lower for Latina women (OR [95% CI] = 0.6 [0.4–0.8]). Those with midwife providers were significantly more likely to report screening for anxiety or depression (OR [95% CI] = 1.81 [1.45–2.23]) than those with physician providers. Discussion: We found significant unmet need for mental health screening and treatment in the United States. Our results confirm racial disparities in referrals to social services and highlight differences across provider types. We discuss barriers to the integration of assessments and interventions for PMAD into routine perinatal services. Implications: We propose incentivizing reimbursement schema for screening and treatment programs; for community-based organizations that provide mental health and social services; and for culture-centered midwife-led perinatal and birth centers. Addressing these gaps is essential to reproductive justice.

Abstract

Background: Aortic Stenosis (AS) is a common syndrome in older adults wherein the narrowing of the aortic valve impedes blood flow, resulting in advanced heart failure.1 AS is associated with a high mortality rate (50 % at 6 months if left untreated), substantial symptom burden, and reduced quality of life.1-3 Transcatheter aortic valve replacement (TAVR) was approved in 2012 as a less invasive alternative to surgical valve repair, offering a treatment for older frail patients. Although objective outcomes have been widely reported,4 the perspectives of older adults undergoing the TAVR process have never been synthesized. Objectives: To contextualize the perspectives and experiences of older adults undergoing TAVR. Methods: An integrative review was conducted using Whittemore and Knafl's five-stage methodology.5 Four electronic databases were searched in April 2023. Articles were included if a qualitative methodology was used to assess the perceptions of older adults (>65 years old) undergoing or recovering from TAVR. Results: Out of 4619 articles screened, 12 articles met the criteria, representing 353 individuals from 10 countries. Relevant themes included the need for an individualized care plan, caregiver and family support, communication and education, persistent psychosocial and physical symptoms, and the unique recovery journey. Conclusion: Older adults with AS undergoing TAVR generally perceive their procedure positively. Improved interdisciplinary and holistic management, open communication, symptom assessment, support, and education is needed.

Abstract

Objective: This epigenomics sub-study embedded within a randomized controlled trial examined whether an evidenced-based behavioral intervention model that decreased stimulant use altered leukocyte DNA methylation (DNAm). Methods: Sexual minority men with HIV who use methamphetamine were randomized to a five-session positive affect intervention (n = 32) or an attention-control condition (n = 21), both delivered during three months of contingency management for stimulant abstinence. All participants exhibited sustained HIV virologic control – an HIV viral load less than 40 copies/mL at baseline and six months post-randomization. The Illumina EPIC BeadChip measured leukocyte methylation of cytosine-phosphate-guanosine (CpG) sites mapping onto five a priori candidate genes of interest (i.e., ADRB2, BDNF, FKBP5, NR3C1, OXTR). Functional DNAm pathways and soluble markers of immune dysfunction were secondary outcomes. Results: Compared to the attention-control condition, the positive affect intervention significantly decreased methylation of CpG sites on genes that regulate β2 adrenergic and oxytocin receptors. There was an inconsistent pattern for the direction of the intervention effects on methylation of CpG sites on genes for glucocorticoid receptors and brain-derived neurotrophic factor. Pathway analyses adjusting for the false discovery rate (padj < 0.05) revealed significant intervention-related alterations in DNAm of Reactome pathways corresponding to neural function as well as dopamine, glutamate, and serotonin release. Positive affect intervention effects on DNAm were accompanied by significant reductions in the self-reported frequency of stimulant use. Conclusions: There is an epigenetic signature of an evidence-based behavioral intervention model that reduced stimulant use, which will guide the identification of biomarkers for treatment responses.

Abstract

Background: Fear of childbirth (FOC) can influence both maternal and child health. Research on FOC in China is scarce, especially on rural women. This study aimed to assess pre- and postpartum FOC and its predictors among Chinese rural women. Methods: This was a prospective correlation study. A total of 569 women completed the prenatal questionnaire in the third trimester, and 477 of them completed the postpartum questionnaire within three days after childbirth. Maternal socio-demographic information, clinical information, childbirth self-efficacy and prenatal and postpartum FOC were investigated. FOC was evaluated using the Wijma Childbirth Expectancy/ Experience Questionnaire (WDEQ). Descriptive, bivariate, multivariate linear regression analysis, univariate and multivariate logistic regression analyses were performed. Results: The mean pre- and postpartum FOC scores were 64.5 (standard deviation: 25.1) and 64.3 (standard deviation: 23.9), respectively, with 20.8% of women reporting severe fear before childbirth and 18.2% after childbirth. Multivariate linear regression analysis revealed predictors for higher levels of prenatal FOC including higher education level, nullipara, higher monthly household income, lower family support, and lower childbirth self-efficacy (p < 0.05) and the predictors for higher levels of postpartum FOC included unemployed status, lower childbirth self-efficacy, and higher prenatal FOC (p < 0.05). Multivariate logistic regression showed that higher childbirth self-efficacy reduced the likelihood of severe prenatal FOC (OR: 0.99, p < 0.001), while severe prenatal FOC increased the likelihood of severe postpartum FOC (OR: 3.57, p < 0.001). Conclusion: The rural women have high levels of FOC before and after childbirth, with approximately 20% experiencing severe FOC during both periods. Higher education level, nullipara, higher monthly household income, lower family support, and lower childbirth self-efficacy are predictors of heightened prenatal FOC. Unemployed status, lower childbirth self-efficacy, and higher prenatal FOC are predictors of heightened postpartum FOC. Notably, enhancing childbirth self-efficacy emerges as crucial in mitigating severe prenatal FOC, while severe prenatal FOC significantly increases the likelihood of severe postpartum FOC. The development of targeted intervention strategies for the above factors can help reduce women’s FOC level and improve their overall pregnancy and childbirth experience.

Abstract

Introduction: The US Department of Defense recommends lethal means safety counseling (LMSC) to promote firearm injury prevention via secure storage of personal firearms. We describe the rollout of a universal, peer-delivered adaptation of Project Safe Guard (PSG)—a brief, single-session LMSC discussion—at a US Space Force installation. Method: Program evaluation data were collected via anonymous, voluntary, and online surveys. Of approximately 862 eligible active-duty service members and embedded civilians, 324 completed the preprogram survey and 68 and 37 completed the 1- and 2-month follow-ups, respectively. Results: At preprogram, 69.1% agreed that peer-delivered LMSC is appropriate. After rollout, 100% of the 222 firearm locking devices available to service members were requested from the on-base Violence Prevention Integrator. The effectiveness of PSG was indeterminable due to the low survey response rates. Conclusions: Despite strong preprogram support for peer-delivered LMSC and behavioral indicators of secure firearm storage (e.g., firearm locking device requests), several challenges limited the uptake and evaluability of the PSG program in this naturalistic environment, including military survey fatigue and competing mission priorities. Additional work is needed to determine the effectiveness of peer-delivered LMSC in a military context. Sustained base support and military-civilian collaborations will be critical.

Abstract

Background: This study assessed changes in actigraphy-estimated sleep and glycemic outcomes after initiating automated insulin delivery (AID). Methods: Ten adults with long-standing type 1 diabetes and impaired awareness of hypoglycemia (IAH) participated in an 18-month clinical trial assessing an AID intervention on hypoglycemia and counter-regulatory mechanisms. Data from eight participants (median age = 58 years) with concurrent wrist actigraph and continuous glucose monitoring (CGM) data were used in the present analyses. Actigraphs and CGM measured sleep and glycemic control at baseline (one week) and months 3, 6, 9, 12, 15, and 18 (three weeks) following AID initiation. HypoCount software integrated actigraphy with CGM data to separate wake and sleep-associated glycemic measures. Paired sample t-tests and Cohen’s d effect sizes modeled changes and their magnitude in sleep, glycemic control, IAH (Clarke score), hypoglycemia severity (HYPO score), hypoglycemia exposure (CGM), and glycemic variability (lability index [LI]; CGM coefficient-of-variation [CV]) from baseline to 18 months. Results: Sleep improved from baseline to 18 months (shorter sleep latency [P <.05, d = 1.74], later sleep offset [P <.05, d = 0.90], less wake after sleep onset [P <.01, d = 1.43]). Later sleep onset (d = 0.74) and sleep midpoint (d = 0.77) showed medium effect sizes. Sleep improvements were evident from 12 to 15 months after AID initiation and were preceded by improved hypoglycemia awareness (Clarke score [d = 1.18]), reduced hypoglycemia severity (HYPO score [d = 2.13]), reduced sleep-associated hypoglycemia (percent time glucose was < 54 mg/dL, < 60 mg/dL,< 70 mg/dL; d = 0.66-0.81), and reduced glucose variability (LI, d = 0.86; CV, d = 0.62). Conclusion: AID improved sleep initiation and maintenance. Improved awareness of hypoglycemia, reduced hypoglycemia severity, hypoglycemia exposure, and glucose variability preceded sleep improvements. This trial is registered with ClinicalTrials.gov NCT03215914 https://clinicaltrials.gov/ct2/show/NCT03215914.

Abstract

Simulation-enhanced interprofessional education is widely viewed as an effective teaching pedagogy to foster effective communication and teamwork for healthcare students. Pharmacists and registered nurses must learn to work collaboratively during their educational programs in order to be prepared for the complexities of modern healthcare. This study evaluated prelicensure pharmacy and prelicensure nursing students' perceptions of professional collaboration before and after caring for a standardized patient exhibiting opioid dependence secondary to inappropriate use of an opioid analgesic. Statistically significant gains in communication, collaboration, roles and responsibilities, patient-centered care, conflict management, and team functioning were measured for both pharmacy and nursing students after the interprofessional simulation. This study adds to the existing evidence that suggests simulation-enhanced interprofessional education is an effective teaching strategy; however, this study demonstrates its usefulness for students learning about safer opioid analgesic practices.

Abstract

Active service members and Veterans with a combat-related traumatic brain injury (TBI) are four times more likely to attempt suicide than those without a TBI. TBIs are the signature injuries of the Post-9/11 conflicts and Combat Veterans (i.e., current and former service members who deployed in support of a combat mission) with these injuries are entitled to receive the Purple Heart medal. However, potentially tens of thousands of Combat Veterans did not receive, or were denied the Purple Heart during the first decade of the Global War on Terrorism because a TBI was not documented during the deployment. To our knowledge, this is the first study to explore the meaning of the Purple Heart and examine the impact of the Purple Heart on Army Combat Veterans with a combat-related TBI. Findings from this mixed methods study revealed that not receiving the Purple Heart is associated with increased suicide risk and lower quality of life after a brain injury. Additionally, thwarted belongingness, perceived burdensomeness, and perceived military institutional betrayal are associated with increased suicide risk in Army Combat Veterans with a TBI. This mixed methods study provides important insights into how Army culture is perceived and the power of the Purple Heart among this high-risk group of Combat Veterans.

Abstract

Retention in HIV care is a critical precursor to ending the epidemic yet remains suboptimal in the United States. Gaining an understanding of the challenges faced by adolescents and young adults (AYA) living with HIV is essential to improving retention in HIV care. This study explored the barriers and facilitators to retention in care among Black and Hispanic AYA living with HIV. Audio-recorded semi-structured interviews were conducted with 20 AYA living with HIV ages 16–29 years in New York City. Our methods entailed an inductive content analysis to explore key concepts, reconcile codes, and identify a theme, categories, and subcategories. Bronfenbrenner’s socioecological model evolved as an organizing framework around barriers and facilitators to retention in care at the individual, interpersonal, healthcare system, and structural level. Data analysis yielded one overarching theme—the influence of psychosocial factors on retention in HIV care. Psychological struggles, powerlessness, clinic-level characteristics, and socioeconomic struggles were barriers reported by participants. Self-responsibility, social support, patient-friendly healthcare services, and socioeconomic resources emerged as facilitators. Retention in HIV care among AYA living with HIV is a multifaceted and complex phenomenon that involves multiple systems. Strengthening patients, healthcare system, and community partnerships can help address some of the HIV-related health disparities.

Abstract

Objective: To qualitatively describe breastfeeding experiences among mothers who used galactagogues to increase their milk supply. Design: One-time, semistructured phone interviews. Setting: US. Participants: Breastfeeding mothers (n = 19) who reported ever consuming foods, beverages, or herbal supplements to increase their milk supply in a cross-sectional online survey were purposefully sampled to participate in this qualitative study. Participants were diverse in terms of race and ethnicity, education, income, infant age (0–18 months), and prior breastfeeding experience (32% first-time breastfeeding). Phenomenon of Interest: Reasons for trying to increase milk supply, sources of information about increasing milk supply, and strategies tried to increase milk supply. Analysis: Interviews were transcribed verbatim and analyzed using reflexive thematic analysis. Results: Participants expressed determination and commitment to breastfeeding but unexpectedly struggled to breastfeed and increase their milk supply. They sought information from multiple sources and used individualized approaches to address milk supply concerns on the basis of recommendations from others, as well as the perceived convenience, cost, palatability, and safety of potential strategies. Conclusions and Implications: Results suggest a need to expand breastfeeding education and support so that lactating parents anticipate common breastfeeding challenges and are aware of evidence-based strategies for increasing their milk supply.