Evaluating the caregiver experience during neoadjuvant therapy for pancreatic ductal adenocarcinoma.

INTRODUCTION: Neoadjuvant therapy (NT) is increasingly recommended for patients with localized pancreatic ductal adenocarcinoma (PDAC). Recent research has highlighted the significant treatment burden that patients experience during NT, but caregiver well-being during NT is poorly understood. METHODS: A cross-sectional mixed-methods analysis of primary caregivers of patients with localized PDAC receiving NT was undertaken. All patients completed the Caregiver Quality of Life Index-Cancer (CQOLC) survey, while semi-structured interviews were conducted among a convenience sample of participants. RESULTS: Among 28 caregivers, the mean age was 60.1 years, and most were patient spouses/significant others (71.4%). Patients had resectable (18%), borderline resectable (46%), or locally advanced (36%) PDAC with a mean treatment duration of 2.9 months at the time of their caregiver's enrollment. Most caregivers felt that they received adequate emotional/psychosocial support (80%) and understood the rationale for NT (93%). A majority (60%) reported that caregiving responsibilities impacted their daily lives and required a decrease in their work hours, leading to financial challenges (47%). While overall QOL was moderate (mean 83 ± 21.1, range 0-140), "emotional burden" (47.3 ± 20.9), and "positive adaption" (57.3 ± 13.9) were the lowest ranked CQOLC subsection scores. DISCUSSION: Caregivers of patients with PDAC undergoing NT experience significant emotional symptoms and impact on their daily lives. Assessing caregiver needs and providing resources during NT should be a priority.

A mediating role of self-care difficulty in the association between caregiver strain and the impact of caregiving on health: A cross-sectional secondary analysis.

Caregivers of people living with dementia face strain, reduced self-care, and poorer health status. However, research examining the links among those outcomes is limited. We explored the association between caregiver strain and the impact of caregiving on health status and identified the mediating role of self-care difficulty in this association. In the national caregiving dataset "Caregiving in the U.S. 2020," we included 312 caregivers in this study. Demographics, caregiving characteristics, a composite scale for caregiver strain, and single-item questions for the impact of caregiving on health status and self-care difficulty were used. Descriptive statistics and mediation analysis were conducted. Results revealed that higher caregiver strain was associated with higher self-care difficulty (OR 2.054, p < .001) and negative health changes due to caregiving (OR 2.719, p < .001). Self-care difficulty partially mediated this association. These results indicated the need to explore interventions or resources to offer caregivers to encourage their self-care awareness and activities.

Use of Digital Health Resources by Sexual and Gender Minority Caregivers of Older Adults: Findings From the 2020 Caregiving in the U.S. Survey.

We applied Andersen's Behavioral Model of Health Services Use to investigate the health needs and use of digital health resources among sexual and/or gender minority (SGM) caregivers. Data were from the Caregiving in the U.S. 2020 survey. Regression analyses were used to describe associations between predisposing, enabling, and need factors and usage of digital health resources. SGM caregivers provided more hours of care per week, reported higher levels of care intensity, and reported higher physical, emotional, and financial strain compared with non-SGM caregivers. Regression analyses indicated SGM status was a significant predictor of overall use of digital health resources. Younger caregivers, racial minority caregivers, those providing higher levels of care, and those reporting a poorer health status were more likely to use digital health resources. Digital health resources may be useful tools for SGM caregivers of older adults. More research is needed to investigate the reasons SGM caregivers use these resources.

Dyadic Hair Cortisol Self-Collection Procedure.

BACKGROUND: At-home self-collection of specimens has become more commonplace because of measures taken in response to the coronavirus pandemic. Self-collection of hair cortisol is important because chronic stress is present in many populations, such as older adults living with Alzheimer's disease and their family caregivers. For the evaluation of chronic stress, scalp hair can be used as a predictive biomarker because it examines the cumulative, retrospective stress from previous months. OBJECTIVES: The aim of the paper is to provide a study procedure for at-home, scalp hair self-collection for cortisol concentration analysis from dyads consisting of a person living with Alzheimer's disease and their family caregiver. METHODS: After informed electronic consent is obtained, a package containing the necessary tools for self-collection of hair samples from the dyad is mailed to the participant's home. Participants are provided detailed print and video multimedia guides outlining how to obtain the hair samples. Ideally, the hair samples are obtained during the virtual data collection meeting with research personnel. Participants mail back the hair sample in a prepaid package to the biomedical laboratory for analysis. DISCUSSION: At-home, self-collection of hair provides potential advantages such as reduced participant burden, especially for vulnerable populations where transportation and different environments are challenging. At-home sample collection options may increase research participation and can be applied to multiple research foci. Research considerations for dyads, such as people living with Alzheimer's disease and their caregivers, are discussed.

Nurse scholars of the Robert Wood Johnson Foundation Harold Amos Medical Faculty Development Program.

BACKGROUND: The challenge to increase the diversity, inclusivity, and equity of nurse scientists is a critical issue to enhance nursing knowledge development, health care, health equity, and health outcomes in the United States. PURPOSE: The purpose of this paper is to highlight the current nurse scholars in the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program (AMFDP). DISCUSSION: Profiles and the programs of research and scholarship of the current AMFDP nurse scholars are described and discussed. Scholars share lessons learned, and how the AMFDP program has influenced their thinking and commitments to future action in service of nursing science, diversity efforts, legacy leadership, issues of health equity. CONCLUSION: RWJF has a history of supporting the development of nursing scholars. AMFDP is an example of legacy leadership program that contributes to a culture of health and the development of next-generation nursing science scholars.

Profiles of women's adjustment after cancer based on sexual and psychosocial wellbeing: results of a cluster analysis.

BACKGROUND: Sexual wellbeing is a critical yet often overlooked aspect of overall wellbeing for women across cancer diagnoses. OBJECTIVE: We identified profiles of women cancer survivors by sexual and psychosocial outcomes and compared groups for differences in relevant outcomes and individual characteristics. METHODS: Partnered women treated for cancer (n = 226; M age = 51.1 (12.6); 54% breast cancer; 86% White) completed a cross-sectional survey assessing sexual and psychosocial wellbeing. K-means cluster analysis modeled subgroups (clusters) with similar response patterns on measures of sexual wellbeing (sexual function, distress, sexual communication, and self-efficacy for communication), psychosocial wellbeing (quality of life (QOL), anxiety and depressive symptoms), and time since treatment. ANOVAs with Tukey post-hoc analyses and chi-square analyses tested cluster mean differences. RESULTS: Three distinct clusters of women differed by levels of adjustment in sexual and psychosocial wellbeing: higher-adjustment (32.7%), intermediate (37.6%), and lower-adjustment (29.6%). Significant differences among the clusters were found for all outcomes, with largest effect sizes for sexual distress (η2p = 0.66), sexual communication (η2p = 0.51), sexual satisfaction (η2p = 0.44), and anxiety and self-efficacy for communication (η2p = 0.32). The intermediate adjustment group was characterized by lower adjustment on measures of sexual and relationship function, and better adjustment on measures of QOL and mood. CONCLUSIONS: Findings suggest that for women cancer survivors, measures of sexual and psychosocial wellbeing can model distinct profiles to inform targeted interventions to meet women's needs. Evidence-based targeted interventions could lead to better sexual function, and ultimately to better QOL and overall wellbeing. IMPLICATIONS FOR PRACTICE: A stepped intervention approach to sexual health care for women with cancer, where content and format depend on degree of sexual and psychosocial adjustment after cancer, may be most appropriate. Interdisciplinary teams may address sexual, emotional, and relationship functioning.

Sexual minorities are at elevated risk of cardiovascular disease from a younger age than heterosexuals.

Cardiovascular disease is the leading cause of death worldwide. In this study, we assessed factors related to cardiovascular disease risk and outcomes among sexual minorities (SM). Data from multiple waves of the PATH study were used in this analysis. Multivariable regression models were used to assess the association between sexual identity and: tobacco or e-cigarette use, adverse cardiovascular events, and age at first diagnosis of adverse cardiovascular disease events. In our sample (N = 23,205), 1,660 (7.15%) participants identified as SM. SM men, relative to heterosexual men, are more likely to be diagnosed with high blood pressure (aRR = 1.27; 95% CI 1.10, 1.47), high cholesterol (aRR = 1.32; 95% CI: 1.12, 1.55), congestive heart failure (aRR = 2.29; 95% CI 1.13, 4.65), stroke (aRR = 2.39; 95% CI: 1.14, 5.04), heart attack (aRR = 2.40; 95% CI 1.42, 4.04), and other heart conditions (aRR = 1.52; 95% CI: 1.06, 2.18). Although no simple differences were observed among SM women compared to heterosexual women, SM women were more likely to be diagnosed at a younger age for high blood pressure (aRR = -0.69; 95% CI - 1.08, - 0.29), high cholesterol (aRR = -0.77; 95% CI - 1.15, - 0.38), stroke (aRR = - 1.04; 95% CI - 1.94, - 0.13), and heart attack (aRR = - 1.26; 95% CI - 2.42, - 0.10). SM men were only diagnosed at a younger age for stroke (aRR = - 1.18; 95% CI - 2.06, - 0.30). Compared to heterosexuals, sexual minorities are at higher risk for cardiovascular disease, more likely to develop cardiovascular disease at an earlier age, and more likely to use tobacco products. Future research should focus on decreasing cardiovascular risk among sexual minorities including reducing tobacco use and stress. Screening recommendations for sexual minority populations should also be reviewed in light of a growing body of literature suggesting elevated risk from a young age.

Inclusive Care Practices and Policies Among Sexual and Gender Minority Older Adults.

As the health care and well-being of sexual and gender minority (SGM; i.e., lesbian, gay, bisexual, and/or transgender or gender non-binary) people in the United States receive federal and local-level attention, SGM older adults and caregivers continue to be left out of important health policy and care conversations. The current article describes policy issues and affirmative strategies related to inclusive care practices among SGM older adults and caregivers. In addition to the broader policies considered related to health and well-being, we include a discussion of local-level policy strategies to mitigate discrimination and promote inclusive care for SGM older adults and caregivers. [Journal of Gerontological Nursing, 48(12), 6-15.].

Improving Developmental Positioning in a Level III NICU Using Evidence-Based Teaching and a Standardized Tool: An Evidence-Based Quality Improvement Project.

Positioning and handling is a core measure of developmental care that has been universally difficult to implement in the technical NICU environment. Appropriate positioning has been shown to not only improve postural and musculoskeletal outcomes, but enhance sensory development, physiologic stability, thermal regulation, behavioral organization, sleep facilitation, and brain development. In order to improve the developmental positioning practices of bedside nurses in a level III neonatal intensive care unit, a quality improvement project was initiated. Guided by the Iowa Model for Evidence-Based Practice, this project included an evidence-based educational intervention and a standardized positioning assessment tool. After the intervention, there was improvement in knowledge scores, and positioning scores increased from an average of 8.81 +/- 0.19 to 10.93 +/- 0.15.

Lessons Learned for Training a Research Team and Teaching Kidney Transplant Recipients How to Use a Mobile Health Technology for Dietary Intake and Physical Activity via a Virtual Platform.

Kidney transplant centers and other health care organizations historically have struggled to merge lifestyle management for diet and physical activity into clinical practice. The use of mobile health (mHealth) applications has the potential for kidney transplant recipients to track calorie intake and physical activity in real time. Few studies have reported how they trained their research team and participants how to use mHealth technology in real time. The purpose of this study was to describe lessons learned for training a research team and teaching kidney transplant recipients how to use mHealth technology utilizing a virtual format. Findings suggest that time and educational materials, and using verbal, written, and visual information are critical when conducting a research study using a virtual format.

Insomnia symptoms, fatigue, and future job exit in American older adults.

BACKGROUND: As older adults prolong working life and face age-related health changes, insomnia symptoms and fatigue may jeopardize their ability to stay in the labor force. Our study explored the relationships between insomnia symptoms, fatigue, and job exit in workers aged 65 years and older. METHODS: Data from the National Health and Aging Trends Study were used (2011-2017). The sample included 953 Medicare beneficiaries with paid work at the time of the interview. Workers were followed annually for 6 years to the time of job exit. Insomnia measures included the number and type of symptoms, and fatigue (measured as low energy). Crude and adjusted odds ratios and 95% confidence intervals were estimated within discrete-time survival analysis. Models were adjusted for health, lifestyle, and sociodemographic characteristics. RESULTS: At baseline, approximately 49% of workers had either one or two insomnia symptoms. Difficulty falling asleep and difficulty maintaining asleep were prevalent in 35% and 37% of the sample. Fatigue was common in <30% of the sample. Workers with difficulty falling asleep were 1.29 times at higher odds to have job exit when compared with workers with no insomnia (p = 0.033). Conversely, fatigued workers were 0.73-0.77 times at lower odds to have job exit when compared with nonfatigued workers (p < 0.05). CONCLUSION: Difficulty falling asleep negatively affects future work status, unlike feeling fatigued. Healthcare providers are encouraged to assess for insomnia and discuss treatments with workers, and workplaces should be flexible with the start of workdays to support worker longevity.

Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers.

AIM: The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in-home dementia patient care that focuses on caregiver-patient relationships. DESIGN: This descriptive study employs a single-group, non-randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. METHODS: Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1-month observation phase for collecting baseline mood states and a 2-month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study-provided smartphone. Caregivers will provide daily, self-reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019. DISCUSSION: This study will develop and test novel in-home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver. IMPACT: The Smarthealth technology discussed will provide in-home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. TRIAL REGISTRATION: This study was registered with Clinical Trials.gov (Identifier NCT04536701).

Maintenance phase of a physical activity intervention in older kidney transplant recipients: A 12-month follow-up.

Daily walking activities are associated with improving cardiovascular outcomes in older kidney transplant recipients. However, little is known regarding physical activity adherence outcomes in older kidney recipients. The purpose of this randomized controlled trial 12-month follow-up study was to evaluate the feasibility of the intervention (SystemCHANGE™ + activity tracker) during the maintenance period (7-12 months), compared to an attention-control group (activity tracker only) in older kidney recipients (age 60 and older). The sample included 60 participants (n = 30 IG; n = 30 ACG). Adherence rates for wearing the activity tracker daily were 96.5% in the IG and 80.8% in the ACG. The IG demonstrated within-group improvements for blood pressure at 12 months. Overall, there was a decrease in the average daily steps observed in both groups. These data suggest this intervention is feasible and additional boosters should be considered during the maintenance period to encourage physical activity.

"It's just part of life": African American daughters caring for parents with dementia.

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

Managing Shame: A Grounded Theory of How Stigma Manifests in Families Living With Dementia.

BACKGROUND: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects. AIMS: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia. METHOD: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia. RESULTS: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact. CONCLUSIONS: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.

Nonpharmacological Strategies Used By Family Caregivers of Persons With Alzheimer's Disease and Related Dementias as Presented in Blogs.

Individuals with Alzheimer's disease and related dementias (ADRD) may exhibit behavioral and psychological symptoms of dementia that can increase the strain experienced by their family caregivers. This strain correlates with increased stress and reduced quality of life for the family caregiver and individual with ADRD. More information is needed regarding the ways in which caregivers manage the caregiving experience in their efforts to reduce strain and maintain or improve quality of life. Many individuals, including dementia caregivers, use web blogs as online journals to share their lived experiences. The current study used blogs written by family caregivers of persons with ADRD to explore strategies used to support their care recipients. Using a qualitative thematic analysis, six themes related to the strategies used by caregivers were identified: Modifying the Physical and Personal Environment; Engaging the Person With ADRD; Seeking Outside Assistance; Using Complementary Therapies; Planning and Organization; and Reminiscing and Traditions. The current findings extend our understanding of strategies for caregiving that are used by and acceptable to family caregivers of persons with ADRD. This information can be used to develop or modify nursing-related interventions and services aimed at improving caregiver strain and quality of life. [Journal of Gerontological Nursing, 45(7), 25-35.].

"A Fine Line That We Walk Every Day": Self-Care Approaches Used by Family Caregivers of Persons with Dementia.

Individuals living with Alzheimer's disease and related dementias (ADRD) often exhibit behavioral and psychological symptoms of distress that can contribute to the strain experienced by their family caregivers. This strain can increase levels of stress for family caregivers and reduce quality of life, which can have a negative impact on physical health and wellbeing for both the caregiver and the person with ADRD. This study used blogs written by family caregivers of persons with ADRD to explore self-care strategies practiced by these caregivers. Using a qualitative thematic analysis, seven themes related to self-care approaches used by caregivers of persons with ADRD were identified: (1) health and wellness; (2) altruism and activism; (3) reminiscing and legacy building; (4) social support; (5) information exchange; (6) organization and planning; and (7) spirituality. By understanding the ways in which caregivers for someone with ADRD practice self-care, interventions and services can be developed in an effort to improve caregiver quality of life.

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults.

The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers. [Journal of Gerontological Nursing, 44(2), 33-40.].

Use of Body Sensors to Examine Nocturnal Agitation, Sleep, and Urinary Incontinence in Individuals With Alzheimer's Disease.

Nighttime agitation, sleep disturbances, and urinary incontinence (UI) occur frequently in individuals with dementia and can add additional burden to family caregivers, although the co-occurrence of these symptoms is not well understood. The purpose of the current study was to determine the feasibility and acceptability of using passive body sensors in community-dwelling individuals with Alzheimer's disease (AD) by family caregivers and the correlates among these distressing symptoms. A single-group, descriptive design with convenience sampling of participants with AD and their family caregivers was undertaken to address the study aims. Results showed that using body sensors was feasible and acceptable and that patterns of nocturnal agitation, sleep, and UI could be determined and were correlated in study participants. Using data from body sensors may be useful to develop and implement targeted, individualized interventions to lessen these distressing symptoms and decrease caregiver burden. Further study in this field is warranted. [Journal of Gerontological Nursing, 44(8), 19-26.].

Background characteristics and treatment-related factors associated with treatment success or failure in a non-pharmacological intervention for dementia caregivers.

BACKGROUND: Non-pharmacological interventions for persons with dementia often rely on family caregivers for implementation. However, caregivers differ in their readiness to use strategies. This study examines dyadic characteristics and treatment-related mechanisms associated with treatment success (high readiness to use strategies) and failure (low readiness to use strategies) at the conclusion of the Advancing Caregiver Training (ACT) intervention. METHODS: Caregiver and person with dementia characteristics and treatment-related variables (treatment participation, number and type of strategies introduced and enacted) were examined in 110 caregivers in intervention. Interventionists rated readiness (1=precontemplation; 2=contemplation; 3=preparation; 4=action) of caregivers to use strategies at the final ACT session. Univariate analyses examined dyadic characteristics, and Multiple Analysis of Covariance (MANCOVA) and Analyses of Covariance (ANCOVA) examined treatment-related factors associated with readiness to use strategies at treatment completion. RESULTS: At treatment completion, 28.2% (N=31) scored in pre-action and 71.8% (N=79) at action. Caregivers at pre-action readiness levels were more likely than those at action to be a spouse, report greater financial difficulties and be managing fewer problem behaviors. Although both groups were introduced an equivalent number of non-pharmacological strategies, caregivers at pre-action were less likely than those at action to report enacting strategies. CONCLUSIONS: Certain dyadic characteristics and treatment-related factors were associated with treatment failure including financial strain and lack of strategy integration. Findings suggest that developing intervention components to address financial concerns and increase opportunities for practicing strategies and then using them between treatment sessions may be important for caregivers at risk of treatment failure.