Conectar
Background
The cost of cancer treatment is higher for breast cancer than any other cancer diagnosis, leaving women with metastatic breast cancer (MBC) vulnerable to challenges given the extended length of cancer treatment, including financial, physical, and psychological burdens.
Objective
The purpose of this study was to examine the lived experiences of women diagnosed with MBC in the realm of financial concerns and unmet support needs specific to their cancer treatment.
Methods
This qualitative, phenomenological study included individual interviews that were audio-recorded and transcribed verbatim. Applied thematic analysis was completed using Atlas.ti. Interrater reliability using Cohen’s kappa was established at 0.80. Participants were recruited from a National Cancer Institute–designated cancer center in the United States.
Results
Sixteen participants were interviewed. A majority were White, non-Hispanic, married, unemployed, and had obtained at least a bachelor’s degree level of education. Nearly 19% of participants reported a gross household income of below $50,000. The mean age of participants was 55.6 years. Two major themes were identified, with each having three corresponding subthemes, including: 1) financial toxicities (cost of cancer treatments and medications, limitations of health insurance, and effect on employment); and 2) unmet support needs (managing usual responsibilities, emotional support, community and organizational support).
Discussion
The results highlight the financial and psychosocial needs of women with MBC. Treatment costs take a huge financial toll on patients and their families, including insured women with higher household incomes. Participants expressed a desire for specific MBC resources and support. Background
Despite experiencing an increased incidence in stroke, minority groups have the lowest reported knowledge of stroke signs and symptoms and are less likely to receive time-sensitive interventions. There is a need to explore the relationship between social determinants of health and stroke awareness and severity within at-risk communities.
Objectives
The aim of this study was to explore relationships between social determinants of health and stroke awareness and severity in an underserved area located in a city borough in Northeastern United States.
Methods
We used an exploratory descriptive retrospective design and existing data. Data from 1,162 patients discharged with a principal diagnosis of stroke (ischemic stroke, subarachnoid hemorrhage, or intracerebral hemorrhage) were analyzed to explore the relationship between social determinants of health (age, sex, race, ethnicity, payer status, zip code) and stroke awareness and severity.
Results
Age group, race, and hospital arrival method were all significant indicators of time to arrival at the hospital. When holding all other factors in the model constant, being 65 years of age or older was associated with a decrease in time to reach the hospital compared to those under 65 years of age. Those who traveled by private transport had longer discovery to arrival times when holding all other factors constant, as compared to those who arrived by emergency medical services. Compared to persons who were White, persons who were Black or Asian saw increased times to hospital arrival.
Discussion
This study found that social determinants of health including age, race, sex, and insurance type significantly influenced stroke awareness and/or severity. These study findings can be used by stroke program leadership and community nurses to direct community-centered stroke awareness outreach. Background
Females with autism often receive late diagnoses—especially those with average or above-average intellectual abilities—highlighting the need to explore the unique experiences of this population for better health care support.
Objective
To explore the experiences and perceptions of females who received a late diagnosis on the autism spectrum in terms of coping and managing their diagnosis.
Methods
A descriptive qualitative study was conducted from December 2022 to March 2023 using semistructured interviews with 14 late-diagnosed autistic female subjects. Purposive and snowball sampling were employed, and thematic analysis of the interview data was performed using ATLAS.ti v.9 software. Findings were reported following standards for reporting qualitative research guidelines.
Results
Two main themes emerged: (a) getting a diagnosis: fitting into the norm, and (b) navigating the distinct significance for autistic females. The findings indicated that masking strategies contribute to delayed diagnoses, and social and health care stigma surrounding autism in females was evident. Areas for improving access to resources and support programs were identified.
Discussion
The results show that masking and camouflaging are predominant strategies among autistic females, contributing to delayed diagnoses and exposing them to additional risks. Enhancing resources and training for health care professionals is necessary to address the specific needs of this population. Background
Population aging has increased the need for solutions that help older adults live independently in their own homes, where medication management is a major challenge.
Objectives
In this systematic review, we assessed the effects of medication dispensers among home-dwelling older adults on outcomes within the five domains of the Quintuple Aim framework: user experiences, health and well-being outcomes, health service utilization and costs, care professional experiences, and equity.
Methods
We identified relevant studies by searching databases (Scopus, CENTRAL, PubMed, Web of Science, CINAHL, PsycINFO, and Cochrane Reviews) from January 2017 to April 2022 with a predefined search strategy and two-person abstract and full-text screening. Two authors extracted the most relevant data and assessed quality for each included study. We assessed the evidence using a four-level quality rating measure: strong, moderate, limited, or no evidence.
Results
We included five original studies and three systematic reviews, which provided information on 20 additional original studies. Data were extracted from these 25 original studies. We found significant results in 16 of them, mostly pointing to the beneficial effects of dispenser devices. Significant results for health and well-being outcomes were found in 13 out of 21 studies in which these were assessed, for service utilization in two out of five studies, for costs in two out of three studies, and for patient/carer experiences in one out of five studies. No study evaluated professional experiences or equity outcomes. Overall, strong evidence of a beneficial effect of dispenser devices in any outcome is lacking, but they can improve health outcomes (moderate evidence of beneficial effects of using dispenser devices on systolic and diastolic blood pressure, and hemoglobin A1c levels). For other outcome domains, there is no or only limited evidence for beneficial effects of dispenser devices.
Discussion
We found that the use of dispenser devices by home-dwelling older adults can improve clinical health outcomes and may reduce health service utilization and costs. More high-quality research is needed to get a better insight into their effects on service utilization and costs. Future studies should also examine the effects on care professionals’ experiences and equity. Background
In sub-Saharan Africa, the risk of obstetric complications remains high throughout the postpartum period.
Objective
We developed and tested a novel, integrated model of group postpartum care titled Focused-Postpartum Care (Focused-PPC) to improve outcomes. In this paper, we report clinical outcomes of participants in the intervention arm and differences in knowledge of postbirth warning signs among those in the intervention and control arms.
Methods
Focused-PPC encompassed recommended clinical assessments, targeted education, and peer support up to 1 year after birth. Focused-PPC was implemented as a parallel randomized controlled trial involving 192 postpartum women across four health centers in Tamale, Ghana, from February 2022 to August 2023. Eligible participants 18 years or older with a live birth were randomly assigned to either the Focused-PPC intervention arm or the control arm at a 1:1 allocation and were not blinded to their allocation. At each health center, 48 participants were allocated to either an intervention or control arm. Focused-PPC groups in the intervention arm consisted of eight participants per group. Participants in the intervention arm received the Focused-PPC integrated group model of care. Participants in the control arm received the standard of postnatal care already administered at each health center.
Results
Baseline analysis included 96 participants from the control arm and 91 participants from the intervention arm. We found that vital signs and clinical outcomes were relatively stable; however, incidences of hypertension substantially decreased among participants in the intervention arm. By 3 months postbirth, most participants in the intervention arm were able to identify all postbirth warning signs and retain this knowledge compared to the control arm. Those in the intervention arm were also knowledgeable of more warning signs at each time point compared to the control arm.
Discussion
An integrated, evidence-based approach to postpartum care, such as Focused-PPC, has potential to increase knowledge and improve clinical outcomes among mothers in Ghana. Background
Tongue-tie is associated with nipple pain and early breastfeeding cessation. To date, research has been limited by small sample sizes and a dearth of evidence on the effects of tongue-tie on infant feeding symptoms and physiologic breastfeeding mechanics.
Objectives
In this article, we describe the protocol for our study exploring infant feeding, negative breastfeeding symptoms, maternal anatomy, and physiologic sucking data between infants with and without tongue-tie.
Methods
A prospective cohort study design is being employed. Over 8 weeks, three visits will be conducted with a sample of mothers and their infants without tongue-tie and a sample of mothers and their infants diagnosed with tongue-tie undergoing treatment via frenotomy. The aims of the study were to compare breastfeeding symptoms, breast anatomy, infant feeding symptoms, feeding efficiency, and nutritive sucking parameters between infants with and without tongue-tie, further comparing these metrics pretreatment and posttreatment via frenotomy with the non-tongue-tied age-matched counterparts.
Results
This study is currently ongoing.
Discussion
Tongue-tie is an everyday problem; clear guidelines are needed to decide whether to treat it. This novel, innovative, and multidisciplinary research study aims to fill critical gaps in understanding the physiological and functional effects of tongue-tie on breastfeeding, offering evidence to inform better clinical decisions and support effective interventions. Background
Due to significant gaps in knowledge around women's health, Congress commissioned the National Academies of Sciences, Engineering, and Medicine (National Academies) to conduct a consensus study on funding allocation, workforce needs, and priority research areas for the National Institutes of Health (NIH).
Objectives
This manuscript summarizes the key points of the new National Academies report on women's health research for NIH, presents the relevance and importance for nursing research, and briefly discusses the need for increased representation of nurse scientists on National Academies panels.
Methods
Beginning in the Fall of 2023, a multidisciplinary panel of 17 experts was convened by National Academies to address gaps in women's health research at NIH. The committee was tasked to identify research priorities for NIH-funded research with a focus on conditions that are female specific, are more common in women, or affect women differently. In addition, the committee was asked to make recommendations on NIH training and education to strengthen the women's health research workforce; changes to NIH structural, systems, and review processes; and allocation of funding to more equitably reflect the burden of disease among women.
Results
The committee found that, from 2013 to 2023, only 8.8% of NIH research dollars focused on women's health research and that basic knowledge about women's physiological, hormonal fluctuations, and chromosomal differences is lacking. Data are also needed to better understand diseases that are female specific, are more common in women, or affect women differently. The committee made eight recommendations for transformative change at NIH related to women's health research.
Discussion
Overall, the report describes the need for transformative change at NIH to advance the science on women's health research and improve outcomes. This includes a comprehensive approach and recommendations that would double the NIH's investment in women's health research, enhance accountability, and provide rigorous oversight, prioritization, and integration of women's health research across NIH. Background
Comorbidities such as Type 2 diabetes mellitus significantly and adversely influence heart failure outcomes, especially in Black adult populations. Likewise, heart failure has a negative effect on diabetes and cardiometabolic outcomes. Dyspnea, a common symptom of heart failure, often correlates with disease severity and prognosis. However, the relationship between comorbid diabetes, dyspnea severity, and cardiometabolic biomarkers in Black adults with heart failure remains understudied.
Objectives
The purpose of this pilot study was to examine differences in the distressing heart failure symptom of dyspnea and in cardiometabolic and inflammatory biomarkers in Black adults living with heart failure with and without diabetes.
Methods
Black adults with heart failure were enrolled in this cross-sectional pilot study. Cardiometabolic and inflammatory biomarkers were measured via multiplex immunoassay. Univariate general liner models were used to identify group differences between persons with heart failure with comorbid diabetes and those without, controlling for age, sex, and comorbid burden.
Results
Participants were mostly female with a mean age of 55 years and mean left ventricular ejection fraction of 33%. Participants with diabetes exhibited higher dyspnea scores compared to those without diabetes, indicating greater symptom burden. Moreover, individuals with comorbid diabetes demonstrated higher levels of cardiometabolic and inflammatory markers.
Discussion
Comorbid diabetes was associated with higher dyspnea severity and adverse cardiometabolic profiles in Black adults with heart failure. These findings underscore the importance of targeted interventions addressing diabetes management and cardiometabolic risk factors to improve symptom control and outcomes in this high-risk population. Further research is warranted to elucidate the underlying mechanisms and develop tailored therapeutic strategies for managing comorbidities in persons with heart failure, particularly in minoritized communities. Background
Fatigue is a highly prevalent symptom for individuals with polycystic ovary syndrome (PCOS); however, characterization of fatigue and investigation into the gut microbiome—a pathway that may contribute to fatigue—remains inadequately explored in Black women with PCOS.
Objectives
The purpose of this cross-sectional study was to examine fatigue and its relationship to the gut microbiome in adult Black women with PCOS.
Methods
Adult Black women with a diagnosis of PCOS were recruited for this cross-sectional study. The Multidimensional Fatigue Inventory-20 (MFI-20) and the PROMIS Fatigue Short Form were used to measure fatigue. The V3/V4 region of the bacterial 16S rRNA gene was sequenced to investigate gut microbial composition. Relative abundance and diversity values were calculated.
Results
We found that Black women with PCOS experience mild to moderate levels of fatigue. An inverse relationship between fatigue scores and alpha diversity values was found for the gut microbiome. We also found distinct beta diversity profiles based on fatigue. Lastly, when controlling for hypertension and body mass index, Ruminococcus bromii, Blautia obeum, Roseburia, and HT002 were associated with three subscales of the MFI-20.
Discussion
Black women with PCOS experience mild to moderate fatigue. Clinicians should be cognizant of this population’s increased risk for fatigue to adequately address their healthcare needs. We also found that gut microbial composition was associated with fatigue in Black women with PCOS. Specifically, a higher relative abundance of certain gut bacteria involved in short-chain fatty acid production and anti-inflammatory pathways was correlated with lower fatigue levels. Future studies should further investigate the link between the gut microbiome and fatigue to determine whether this relationship is causal as better insight could inform tailored diet and exercise interventions to alter the gut microbiome and reduce fatigue. Background
Black adults have a higher risk for heart failure (HF) than others, which may be related to higher cardiovascular risk factors and also inflammatory dietary patterns. The Western diet is associated with inflammation and contributes to HF. Trimethylamine N-oxide is a diet-linked metabolite that contributes to inflammation and is associated with higher tumor necrosis factor-alpha (TNF-α) levels, especially in HF populations. The dietary inflammatory index score measures a diet’s inflammatory potential and food’s inflammatory effects.
Objective
The purpose of this pilot study was to explore associations between the Western diet, dietary inflammatory index, trimethylamine N-oxide, relevant covariates and variables, and TNF-α in Black persons with HF.
Methods
Thirty-one Black participants (mean age = 55 years, 68% women) with HF were enrolled. Trimethylamine N-oxide and TNF-α levels were analyzed using immunoassays. A food frequency questionnaire was completed, and dietary inflammatory index scores and food groups were calculated. Analyses included correlations and I-test statistics.
Results
Mean dietary inflammatory index score was −0.38, noting an anti-inflammatory diet with slightly higher inflammatory diet scores in men compared to women. The dietary inflammatory index score showed a negative association with dietary choline but not with trimethylamine N-oxide or TNF-α. Trimethylamine N-oxide and age were positively correlated, along with the correlation for TNF-α with a moderate effect size. No relationship was found among dietary inflammatory index, TNF-α, and trimethylamine N-oxide variables.
Discussion
A greater understanding of intake of inflammatory foods and relationships with immune factors is warranted to inform intervention development. In Black adults with HF, it is important to consider the intake of inflammatory foods as increased age may affect the retention of dietary metabolites. Metabolites may also increase the levels of inflammation. Knowledge about these relationships could lead to tailored dietary interventions based on diet, age, and culture patterns. Background
There is a dearth of research inclusive of African American adults living with obstructive sleep apnea (OSA) despite differences in symptom presentations compared to non-Hispanic White patient populations. Less is known regarding the potential effect of comorbidities, including hypertension, on commonly reported symptoms, such as fatigue, and their association with inflammatory biomarkers.
Objective
This longitudinal pilot study aimed to characterize fatigue symptom presentations among African American adults newly diagnosed with OSA and discern peripheral blood analytes linked to symptoms while accounting for co-occurring hypertension.
Methods
African American adults newly diagnosed with OSA with and without co-occurring hypertension were approached by study staff and recruited following their diagnostic visit with sleep medicine clinicians at two health systems and followed over 6 months after commencing continuous positive airway pressure treatment. Patient-Reported Outcomes Measurement Information System Fatigue surveys and plasma were collected every 3 months from 29 participants. Mixed-effects models examined changes in fatigue symptom presentations over time while accounting for plasma-based analytes and hypertension status.
Results
Despite higher fatigue symptom severity upon diagnosis, participants with co-occurring hypertension reported greater improvements in fatigue scores after commencing continuous positive airway pressure treatment for up to 6 months than those without hypertension. Inverse correlations were observed between fatigue scores, C-reactive protein, matrix metalloproteinase-8, and osteoprotegerin analyte levels among participants with/without hypertension. Across all participants, changes in interleukin-6 were associated with changes in fatigue scores in the first 3 months after diagnosis.
Discussion
Findings indicate that hypertension is linked to increased fatigue upon diagnosis of OSA in this sample of African American adults. Fatigue in persons with hypertension improved after treatment in this sample. These hypothesis-generating findings can inform future interventional studies aimed at improving fatigue among persons with OSA while leveraging markers linked to fatigue symptom severity as potential objective markers of improvements. Further research on the role of inflammatory markers, such as IL-6, on fatigue symptom presentations is warranted in persons with OSA. Background
Safe and reliable implementation of complex study protocols in multisite clinical trials requires that all study personnel have 24/7 access to up-to-date study materials. Study websites can serve as an electronic manual of operations (eMOO) to support trial conduct.
Objective
We describe the development, organization, and maintenance of a study website and eMOO to facilitate quick and efficient communication during conduct of a complex, multisite, international clinical trial.
Methods
We worked closely with our information technology department to develop and maintain our study website, which includes a public home page, a section for parents and families, and three password-protected portals that serve as an eMOO for (a) study sites, (b) study site investigators, and (c) the operations team (e.g., clinical coordination center, data coordination center).
Results
The public home page is helpful for families contemplating study participation and for nonparticipating sites considering joining our trial. The patient and family education section supports family participation in the study. The study site portal contains all information needed for local study teams to safely manage a study patient. The investigator portal provides access to research-specific materials needed to lead the study at each site. The operations team portal supports overall study management. For other scientists considering use of a study website for their multisite research, we recommend close collaboration with information technology for development and maintenance, limited and clearly defined roles for version control, and use of unmodifiable file formats to prevent unapproved alterations of study materials.
Discussion
Although investment in development and maintenance has been significant, we have appreciated marked value to our operations team and study sites. Our study website development process is relevant to other scientists conducting multisite clinical research. Background
Chinese American immigrants have been underrepresented in health research partly due to challenges in recruitment.
Objectives
This study aims to describe recruitment and retention strategies and report adherence in a 7-day observational physical activity study of Chinese American immigrants with prior gestational diabetes during the COVID-19 pandemic.
Methods
Foreign-born Chinese women aged 18–45 years, with a gestational diabetes index pregnancy of 0.5–5 years, who were not pregnant and had no current diabetes diagnosis were recruited. They wore an accelerometer for 7 consecutive days and completed an online survey. Multiple recruitment strategies were used: (a) culturally and linguistically tailored flyers, (b) social media platforms (e.g., WeChat [a popular Chinese platform] and Facebook), (c) near-peer recruitment and snowball sampling, and (d) a study website. Retention strategies included flexible scheduling and accommodation, rapid communications, and incentives. Adherence strategies included a paper diary and/or automated daily text reminders with a daily log for device wearing, daily email reminders for the online survey, close monitoring, and timely problem-solving.
Results
Participants were recruited from 17 states; 108 were enrolled from August 2020 to August 2021. There were 2,479 visits to the study webpage, 194 screening entries, and 149 inquiries about the study. Their mean age was 34.3 years, and the mean length of U.S. stay was 9.2 years. Despite community outreach, participants were mainly recruited from social media (e.g., WeChat). The majority were recruited via near-peer recruitment and snowball sampling. The retention rate was 96.3%; about 99% had valid actigraphy data, and 81.7% wore the device for 7 days. The majority of devices were successfully returned, and the majority completed the online survey on time.
Discussion
We demonstrated the feasibility of recruiting and retaining a geographically diverse sample of Chinese American immigrants with prior gestational diabetes during the COVID-19 pandemic. Recruiting Chinese immigrants via social media (e.g., WeChat) is a viable approach. Nonetheless, more inclusive recruitment strategies are needed to ensure broad representation from diverse socioeconomic groups of immigrants. Background
Research involvement and engagement is a vital aspect of nursing practice. However, research in dementia care remains limited compared to research focused on finding a cure, presenting a significant gap that specialist dementia nurses (Admiral Nurses) can help bridge by participating in research themselves and facilitating recruitment to research.
Objectives
This study aimed to assess the research involvement and support needs of Admiral Nurses and identify factors affecting their participation in research. This research is particularly timely as Dementia UK has launched its first research strategy, which necessitates strengthening research capacity within Admiral Nursing.
Methods
We used a mixed methods convergent parallel synthesis design, simultaneously collecting quantitative and qualitative data. An online survey was conducted in January 2023, targeting current Admiral Nurses across the United Kingdom. The survey included questions addressing demographics, research experience, goals, barriers, facilitators, and support needs. Data analysis involved descriptive statistics, frequencies, univariate analyses, and thematic analysis.
Results
A positive relationship was found between the highest level of academic achievement and current or previous research involvement, as well as interest in becoming involved in research in the future. Although most nurses recognized the importance of research, only half reported current or past research involvement, indicating a need for increased support. A lack of access and opportunities for peer discussion hindered engagement with research findings. Time constraints, lack of support, and low confidence were major barriers to research involvement. Support needs varied but included mentorship, coaching, and the potential for a community of practice for research.
Discussion
This survey of Admiral Nurses sheds light on their research involvement, support needs, and barriers to participation. Recognizing the significance of research while identifying challenges and support requirements is crucial for enhancing research capacity among these specialized nurses. This study contributes valuable insights into the world of specialist dementia nursing and lays the foundation for future strategies to increase research engagement in this field. Background
Fatigue, a prevalent complex symptom among patients with chronic obstructive pulmonary disease (COPD), is considered an important clinical indicator of disease severity. However, the underlying mechanisms of COPD-related fatigue are not fully understood.
Objectives
This analysis explored the relationships between peripheral inflammatory markers and COPD-related fatigue in people with moderate to severe COPD.
Methods
This is a secondary analysis of a longitudinal observational study of individuals with COPD examining the biological causes and functional consequences of depression. The data used in this study were collected at baseline. Systemic inflammation markers included C-reactive protein (CRP) and three pro-inflammatory cytokines consisting of interleukin-6 (IL-6), IL-8, and tumor necrosis factor-α. COPD-related fatigue was self-reported using the Chronic Respiratory Questionnaire. Covariates included age; gender; smoking status; disease severity; symptoms of depression, anxiety, and pain; and social support. Multivariable linear regression analyses were conducted.
Results
The sample included 300 adults living with COPD; 80% were male, and the average age was 67.6 years. Modest correlations were found between two systemic inflammatory markers (CRP and IL-8) and COPD-related fatigue. CRP was the only inflammatory marker significantly associated with fatigue symptoms after adjusting for covariates in multivariable analyses. Depression, pain, and education level were also significant predictors of COPD-related fatigue.
Discussion
The findings suggest that altered immune response based on CRP may contribute to COPD-related fatigue. Management of depression and pain may work as an effective treatment strategy for COPD-related fatigue. Further longitudinal studies with a broader range of inflammatory markers and multidimensional measures of fatigue symptoms are warranted. 
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