What contextual factors account for anxiety and depressed mood in hospice family caregivers?

OBJECTIVE: End-of-life caregiving is associated with poorer mental health compared with other caregiving. The objective of this study was to examine the association between contextual characteristics and appraisal factors on family caregivers' mental health and well-being. METHODS: Family hospice caregivers were recruited across four states using a non-probabilistic sampling approach. This study analyzed contextual (demographic, caregiving, economic) and appraisal factors (Medical Outcomes Study Social Support Survey, Zarit Burden Interview) on caregivers' anxiety and depression (Hospital Anxiety and Depression scale, and positive affect and well-being (Positive Affect and Well-being Scale). Hierarchical linear regression models were generated in SPSS version 24. RESULTS: Data from 102 family caregivers were analyzed. On average, participants were 58.93 years of age (SD = 14.24), mostly female (72.55%), spouses/partners (51.96%), and non-Hispanic White (78.43%). Most (75.49%) described their financial situation as comfortable or more than adequate. Younger age (B = -0.11, 95% CI = -0.18 to -0.05) and increased caregiving burden (B = 0.18, 95% CI = 0.09 to 0.27) were associated with increased anxiety, while lower perceived financial adequacy (B = -1.19, 95% CI = -2.07 to -0.32), lower social support (B = -0.04, 95% CI = -0.06 to -0.01), and increased caregiving burden (B = 0.15, 95% CI = 0.08-0.22) were associated with worsened depression. Greater social support (B = 0.10, 95% CI = 0.05-0.14) and lower caregiving burden (B = -0.19, 95% CI = -0.32 to -0.07) were associated with greater positive affect and well-being. CONCLUSIONS: Findings suggest significant impact of contextual factors on mental health and well-being, and support the need for holistic assessment of hospice caregivers' wellbeing and programs and policies providing social services and economic support to caregivers.

"I Feel All Alone Out Here": Analysis of Audio Diaries of Bereaved Hospice Family Caregivers During the COVID-19 Pandemic.

The COVID-19 pandemic has dramatically changed social life. This secondary qualitative analysis aimed to better understand the impact of the pandemic on bereaved hospice family caregivers' experiences of social connection and isolation in a time of social distancing and general anxiety. Six caregivers in 3 states recorded audio diaries (N = 59) between March 13 and May 15, 2020. Caregivers were, on average, 56.80 years old (SD, 14.22; range, 32-67 years old) and consisted of spouses (n = 2), adult children (n = 3), and a sibling (n = 1). Using NVIVO 12, caregiver diaries were coded for (1) "social connection" (n = 23), defined as being able to access or seeking informal or formal social support networks; (2) "isolation" (n = 17), defined as being unable or reluctant to access informal or formal social support networks, or feeling alone; and (3) "bereavement processes" (n = 147), informed by the dual process model of bereavement (restoration and loss-oriented stressors). Content analysis revealed that caregivers were able to connect with others despite physical distancing expectations, expressed loneliness and grief while in isolation, and described moving on in the face of uncertainty. Findings provide insight into how caregivers experienced bereavement during the initial period of the pandemic and highlight implications for hospice bereavement services.

The National Postdoctoral Palliative Care Research Training Collaborative: History, Activities, Challenges, and Future Goals.

Background: Palliative care-related postdoctoral training opportunities are critical to increase the quantity and quality of palliative care research. Objective: To describe the history, activities, challenges, and future goals of the National Postdoctoral Palliative Care Research Training Collaborative. Design: National web-based survey of participating program leaders. Measurements: Information about participating programs, trainees, challenges faced, and future goals. Results: Nine participating programs at academic institutions across the United States focus on diverse aspects of palliative care research. The majority of 73 current and former fellows are female (75%) and white (84%). In total, 38% of fellows (n = 28) have MD backgrounds, of whom less than half (n = 12) completed hospice and palliative medicine fellowships. An additional 38% of fellows (n = 28) have nursing PhD backgrounds and 23% (n = 17) have other diverse types of PhD backgrounds. Key challenges relate to recruiting diverse trainees, fostering a shared identity, effectively advocating for trainees, and securing funding. Future goals include expanding efforts to engage clinician and nonclinician scientists, fostering the pipeline of palliative care researchers through expanded mentorship of predoctoral and clinical trainees, increasing the number of postdoctoral palliative care training programs, and expanding funding support for career development grants. Conclusion: The National Postdoctoral Palliative Care Research Training Collaborative fills an important role in creating a community for palliative care research trainees and developing strategies to address shared challenges.

Computational modelling folate metabolism and DNA methylation: implications for understanding health and ageing.

Dietary folates have a key role to play in health, as deficiencies in the intake of these B vitamins have been implicated in a wide variety of clinical conditions. The reason for this is folates function as single carbon donors in the synthesis of methionine and nucleotides. Moreover, folates have a vital role to play in the epigenetics of mammalian cells by supplying methyl groups for DNA methylation reactions. Intriguingly, a growing body of experimental evidence suggests that DNA methylation status could be a central modulator of the ageing process. This has important health implications because the methylation status of the human genome could be used to infer age-related disease risk. Thus, it is imperative we further our understanding of the processes which underpin DNA methylation and how these intersect with folate metabolism and ageing. The biochemical and molecular mechanisms, which underpin these processes, are complex. However, computational modelling offers an ideal framework for handling this complexity. A number of computational models have been assembled over the years, but to date, no model has represented the full scope of the interaction between the folate cycle and the reactions, which governs the DNA methylation cycle. In this review, we will discuss several of the models, which have been developed to represent these systems. In addition, we will present a rationale for developing a combined model of folate metabolism and the DNA methylation cycle.

LDL-C levels in older people: Cholesterol homeostasis and the free radical theory of ageing converge.

The cardiovascular disease (CVD) risk factor, low density lipoprotein cholesterol (LDL-C) increases with age, up until the midpoint of life in males and females. However, LDL-C can decrease with age in older men and women. Intriguingly, a recent systematic review also revealed an inverse association between LDL-C levels and cardiovascular mortality in older people; low levels of LDL-C were associated with reduced risk of mortality. Such findings are puzzling and require a biological explanation. In this paper a hypothesis is proposed to explain these observations. We hypothesize that the free radical theory of ageing (FRTA) together with disrupted cholesterol homeostasis can account for these observations. Based on this hypothesis, dysregulated hepatic cholesterol homeostasis in older people is characterised by two distinct metabolic states. The first state accounts for an older person who has elevated plasma LDL-C. This state is underpinned by the FRTA which suggests there is a decrease in cellular antioxidant capacity with age. This deficiency enables hepatic reactive oxidative species (ROS) to induce the total activation of HMG-CoA reductase, the key rate limiting enzyme in cholesterol biosynthesis. An increase in cholesterol synthesis elicits a corresponding rise in LDL-C, due to the downregulation of LDL receptor synthesis, and increased production of very low density lipoprotein cholesterol (VLDL-C). In the second state of dysregulation, ROS also trigger the total activation of HMG-CoA reductase. However, due to an age associated decrease in the activity of cholesterol-esterifying enzyme, acyl CoA: cholesterol acyltransferase, there is restricted conversion of excess free cholesterol (FC) to cholesterol esters. Consequently, the secretion of VLDL-C drops, and there is a corresponding decrease in LDL-C. As intracellular levels of FC accumulate, this state progresses to a pathophysiological condition akin to nonalcoholic fatty liver disease. It is our conjecture this deleterious state has the potential to account for the inverse association between LDL-C level and CVD risk observed in older people.

Modelling the molecular mechanisms of aging.

The aging process is driven at the cellular level by random molecular damage that slowly accumulates with age. Although cells possess mechanisms to repair or remove damage, they are not 100% efficient and their efficiency declines with age. There are many molecular mechanisms involved and exogenous factors such as stress also contribute to the aging process. The complexity of the aging process has stimulated the use of computational modelling in order to increase our understanding of the system, test hypotheses and make testable predictions. As many different mechanisms are involved, a wide range of models have been developed. This paper gives an overview of the types of models that have been developed, the range of tools used, modelling standards and discusses many specific examples of models that have been grouped according to the main mechanisms that they address. We conclude by discussing the opportunities and challenges for future modelling in this field.

Aging and computational systems biology.

Aging research is undergoing a paradigm shift, which has led to new and innovative methods of exploring this complex phenomenon. The systems biology approach endeavors to understand biological systems in a holistic manner, by taking account of intrinsic interactions, while also attempting to account for the impact of external inputs, such as diet. A key technique employed in systems biology is computational modeling, which involves mathematically describing and simulating the dynamics of biological systems. Although a large number of computational models have been developed in recent years, these models have focused on various discrete components of the aging process, and to date no model has succeeded in completely representing the full scope of aging. Combining existing models or developing new models may help to address this need and in so doing could help achieve an improved understanding of the intrinsic mechanisms which underpin aging.

Obesity and the dysregulation of fatty acid metabolism: implications for healthy aging.

INTRODUCTION: The population of the world is aging. In 2010, an estimated 524 million people were aged 65 years or older representing eight percent of the global population. By 2050, this number is expected to nearly triple to approximately 1.5 billion, 16 percent of the world's population. Although people are living longer, the quality of their lives are often compromised due to ill-health. Areas covered: Of the conditions which compromise health as we age, obesity is at the forefront. Over half of the global older population were overweight or obese in 2010, significantly increasing the risk of a range of metabolic diseases. Although, it is well recognised excessive calorie intake is a fundamental driver of adipose tissue dysfunction, the relationship between obesity; intrinsic aging; and fat metabolism is less understood. In this review we discuss the intersection between obesity, aging and the factors which contribute to the dysregulation of whole-body fat metabolism. Expert commentary: Being obese disrupts an array of physiological systems and there is significant crosstalk among these. Moreover it is imperative to acknowledge the contribution intrinsic aging makes to the dysregulation of these systems and the onset of disease.

Mathematical modelling of metabolic regulation in aging.

The underlying cellular mechanisms that characterize aging are complex and multifaceted. However, it is emerging that aging could be regulated by two distinct metabolic hubs. These hubs are the pathway defined by the mammalian target of rapamycin (mTOR) and that defined by the NAD+-dependent deacetylase enzyme, SIRT1. Recent experimental evidence suggests that there is crosstalk between these two important pathways; however, the mechanisms underpinning their interaction(s) remains poorly understood. In this review, we propose using computational modelling in tandem with experimentation to delineate the mechanism(s). We briefly discuss the main modelling frameworks that could be used to disentangle this relationship and present a reduced reaction pathway that could be modelled. We conclude by outlining the limitations of computational modelling and by discussing opportunities for future progress in this area.

Computationally Modeling Lipid Metabolism and Aging: A Mini-review.

One of the greatest challenges in biology is to improve the understanding of the mechanisms which underpin aging and how these affect health. The need to better understand aging is amplified by demographic changes, which have caused a gradual increase in the global population of older people. Aging western populations have resulted in a rise in the prevalence of age-related pathologies. Of these diseases, cardiovascular disease is the most common underlying condition in older people. The dysregulation of lipid metabolism due to aging impinges significantly on cardiovascular health. However, the multifaceted nature of lipid metabolism and the complexities of its interaction with aging make it challenging to understand by conventional means. To address this challenge computational modeling, a key component of the systems biology paradigm is being used to study the dynamics of lipid metabolism. This mini-review briefly outlines the key regulators of lipid metabolism, their dysregulation, and how computational modeling is being used to gain an increased insight into this system.

Computational systems biology for aging research.

Computational modelling is a key component of systems biology and integrates with the other techniques discussed thus far in this book by utilizing a myriad of data that are being generated to quantitatively represent and simulate biological systems. This chapter will describe what computational modelling involves; the rationale for using it, and the appropriateness of modelling for investigating the aging process. How a model is assembled and the different theoretical frameworks that can be used to build a model are also discussed. In addition, the chapter will describe several models which demonstrate the effectiveness of each computational approach for investigating the constituents of a healthy aging trajectory. Specifically, a number of models will be showcased which focus on the complex age-related disorders associated with unhealthy aging. To conclude, we discuss the future applications of computational systems modelling to aging research.

Lipid metabolism and hormonal interactions: impact on cardiovascular disease and healthy aging.

Populations in developed nations are aging gradually; it is predicted that by 2050 almost a quarter of the world's population will be over 60 years old, more than twice the figure at the turn of the 20th century. Although we are living longer, this does not mean the extra years will be spent in good health. Cardiovascular diseases are the primary cause of ill health and their prevalence increases with age. Traditionally, lipid biomarkers have been utilized to stratify disease risk and predict the onset of cardiovascular events. However, recent evidence suggests that hormonal interplay with lipid metabolism could have a significant role to play in modulating cardiovascular disease risk. This review will explore recent findings which have investigated the role hormones have on the dynamics of lipid metabolism. The aim is to offer an insight into potential avenues for therapeutic intervention.

Strengths-based cognitive-behavioural therapy: a four-step model to build resilience.

Padesky and Mooney's four-step Strengths-Based cognitive-behavioural therapy (CBT) model is designed to help clients build positive qualities. This article shows how it can be used to build and strengthen personal resilience. A structured search for client strengths is central to the approach, and methods designed to bring hidden strengths into client awareness are demonstrated through therapist-client dialogues. Development of positive qualities requires a shift in therapy perspective and different therapy methods from those employed when therapy is designed to ameliorate distress. Required adjustments to classic CBT are highlighted with specific recommendations for clinical modifications designed to support client development of resilience such as a focus on current strengths, the constructive use of imagery and client-generated metaphors. Although the focus of this article is on resilience, this Strengths-Based CBT model offers a template that also can be used to develop other positive human qualities.

Hospice nurse communication with patients with cancer and their family caregivers.

BACKGROUND: Effective communication by hospice nurses enhances symptom management for the patient, reduces family caregiver burden and distress, and potentially improves bereavement adjustment. However, research has not kept pace with the rising use of hospice by patients with cancer and thus we know little about how hospice nurses communicate. METHODS: The overriding objective of this pilot study was to provide insight into these in-home visits. Hospice nurses audiorecorded their interactions over time with family caregivers and patients with cancer. The communication within these tapes was coded using Roter Interaction Analysis System (RIAS) and analyzed. RESULTS: We found that tape recording home hospice nurse visits was feasible. RIAS was suited to capture the general content and process of the home hospice encounter and the coded interactions show the range of topics and emotions that are evident in the dialogue. Implications and future directions for research are discussed.

The experience of a sore mouth and associated symptoms in patients with cancer receiving outpatient chemotherapy.

This study aimed to describe sore mouth (SM) severity and distress, associated symptoms, and consequences in cancer chemotherapy outpatients. Secondary analysis was used in this study. A total of 223 patients in 4 treatment centers participated in the study. Data from an intervention study using a computer-based telephone communication system to assess patients' daily symptom experience were analyzed to obtain highest, average, and lowest ratings of severity and distress for SM, fatigue, trouble sleeping, feeling down/blue, and feeling anxious. Consequence data included oral intake, time spent lying down, ability to work, and daily activity. Approximately 51% reported SM, with a mean highest, average, and lowest severity score of 3.1 in cycle 2 and 3.09 in cycle 3. Sore mouth severity was correlated with severity of fatigue, feeling down/blue, feeling anxious, and trouble sleeping. Sore mouth distress was correlated with the same symptoms. Sore mouth severity was correlated with the number of 8-oz glasses of liquid consumed, effect on daily activity, time spent lying down, but not with ability to work. Half of patients experienced SM, which was associated with several other symptoms and led to specific consequences. Understanding the complex symptom experience of patients with SM, including consequences, will assist nurses in developing more comprehensive clinical assessments and interventions. In addition, the association of multiple symptoms with SM will provide a foundation for further research investigation in oral mucositis.

Patterns of sore mouth in outpatients with cancer receiving chemotherapy.

GOALS: The aims of this secondary data analysis were to (a) categorize patterns in the development, duration, intensity, and resolution of sore mouth (which can be considered a proxy for oral mucositis) severity and distress over two cycles of chemotherapy in cancer outpatients and (b) examine the relationship of demographic (age, gender, marital status, and educational level) and disease characteristics (type of cancer and type of chemotherapy) to specific patterns of sore mouth (SM). MATERIALS AND METHODS: Visual graphical analysis (VGA) was applied to identify individual patterns of SM severity and distress in 51 outpatients receiving chemotherapy who provided daily reports of sore mouth using a computerized interactive voice response system. The majority were female (n = 41, 8%) with a mean age of 53 (SD = 8.35). Most had breast cancer (68%), and one third received chemotherapy with adriamycin and cyclophosphamide (AC). VGA is a technique in which graphs of individual patients' symptoms are coded for specific individual or group profiles. MAIN RESULTS: Seven distinct patterns were identified based on variability in onset, duration, and intensity (degree of severity or distress). Chemotherapy agents were significantly associated with patterns of SM. The AC regimen was significantly associated with late onset; however, the intensity did not last long. In contrast, patients receiving R-CHOP were significantly more likely to experience duration intensity (SM after day 15 and a score equal to or greater than a 5 on a 1-10 scale). CONCLUSIONS: VGA revealed symptom patterns often hidden in traditional analysis. Understanding individual variability is important to the design and implementation of future intervention research and clinical care.

Folate and vitamin B12: friendly or enemy nutrients for the elderly.

In the UK vitamin B12 deficiency occurs in approximately 20% of adults aged >65 years. This incidence is significantly higher than that among the general population. The reported incidence invariably depends on the criteria of deficiency used, and in fact estimates rise to 24% and 46% among free-living and institutionalised elderly respectively when methylmalonic acid is used as a marker of vitamin B12 status. The incidence of, and the criteria for diagnosis of, deficiency have drawn much attention recently in the wake of the implementation of folic acid fortification of flour in the USA. This fortification strategy has proved to be extremely successful in increasing folic acid intakes pre-conceptually and thereby reducing the incidence of neural-tube defects among babies born in the USA since 1998. However, in successfully delivering additional folic acid to pregnant women fortification also increases the consumption of folic acid of everyone who consumes products containing flour, including the elderly. It is argued that consuming additional folic acid (as 'synthetic' pteroylglutamic acid) from fortified foods increases the risk of 'masking' megaloblastic anaemia caused by vitamin B12 deficiency. Thus, a number of issues arise for discussion. Are clinicians forced to rely on megaloblastic anaemia as the only sign of possible vitamin B12 deficiency? Is serum vitamin B12 alone adequate to confirm vitamin B12 deficiency or should other diagnostic markers be used routinely in clinical practice? Is the level of intake of folic acid among the elderly (post-fortification) likely to be so high as to cure or 'mask' the anaemia associated with vitamin B12 deficiency?

Health behaviors in cancer survivors.

PURPOSE/OBJECTIVES: To describe health behaviors of cancer survivors by cancer diagnosis and to compare them to people without a personal or family cancer history. DESIGN: Cross-sectional secondary data analysis. SETTING: A national, list-assisted telephone survey using random-digit dialing of U.S. adults about use of cancer-related information and cancer beliefs. SAMPLE: 619 cancer survivors and 2,141 participants without a history of cancer from the original 6,369 Health Information National Trends Survey (HINTS) respondents. METHODS: Using the National Cancer Institute's 2003 HINTS, further analyses were conducted. MAIN RESEARCH VARIABLES: Cancer history, current smoking, fruit and vegetable consumption, physical activity, and body mass index (BMI). FINDINGS: When controlling for demographic variables, no differences were found in self-reported health behaviors between survivors and those without cancer: 22.5% of survivors and 18.4% of those without cancer were current smokers, 18% of survivors and 14.9% of those without cancer consumed at least five fruits or vegetables per day, 45.3% of survivors and 53% of those without cancer were physically active at least weekly, and 58% of survivors and 54.9% of those without cancer were overweight or obese (i.e., BMI > 25). Only 7.4% of survivors and 6.4% of participants without cancer reported positively on all three health behaviors and had a healthy or normal weight. CONCLUSIONS: Survivors did not have different health behaviors when compared to participants without a history of cancer. Neither group met the American Cancer Society or Healthy People 2010 objectives for these behaviors. Adoption of healthy lifestyle behaviors should be addressed in cancer survivors. IMPLICATIONS FOR NURSING: Cancer survivors need to be assessed for current smoking, dietary habits, physical activity, and weight. Information and resources should be made available, if needed, to promote the adoption of healthy lifestyle behaviors.

Visual graphical analysis: a technique to investigate symptom trajectories over time.

BACKGROUND: Research to address clinical symptoms and the way they change over time in an individual is of paramount importance to healthcare researchers who are interested in improving the quality of life for ill patients. However, typical statistical methods that rely on means can obscure individual trajectories of change. Visual graphical analysis (VGA) is a technique that can provide researchers with an alternative method of quantitative statistical analysis that is more sensitive to individual change and variation. OBJECTIVES: To (a) describe the use of VGA as a method to evaluate longitudinal data, (b) discuss challenges to using this method, and (c) offer recommendations for future research in which the method could be implemented. APPROACH: This methodological article uses data collected from a primary study to present the method of VGA. Daily self-reported sore mouth severity scores from patients receiving outpatient chemotherapy were used in this VGA. The steps of VGA include (a) determining inclusion criteria, (b) managing missing data, (c) creating visual graphs, (d) identifying specific patterns, and (e) performing validation and verification. DISCUSSION: Because symptoms occur differently for each patient, this method allows researchers to see symptom trajectories on an individual basis. Creation and analysis of longitudinal graphs could be used also to inspect other symptoms or clinical problems such as headaches, fatigue, constipation, nausea and vomiting, and psychological difficulties. The value of VGA is that it allows a researcher to study the patterns of an individual's experience, as opposed to averaging all individuals' responses over time. Although graphical analysis is exploratory in nature, it may lead to enhanced longitudinal recognition of symptoms that might not be identified otherwise by quantitative data analysis using summary statistics.

Cancer survivors information seeking behaviors: a comparison of survivors who do and do not seek information about cancer.

OBJECTIVE: To examine the cancer information seeking behaviors and preferences of cancer survivors. METHODS: This cross-sectional study used the National Cancer Institute's 2003 Health Information National Trends Survey data to evaluate 619 cancer survivors. RESULTS: Two-thirds (67.5%, n = 418) of the survivors sought cancer information (InfoSeek) and 32.5% (n = 201) did not (NoInfoSeek). Significant predictors of cancer information seeking included age (less than 65), gender (female), income (>US$ 25,000/year), and having a regular health care provider (HCP). CONCLUSION: Not all survivors actively look for cancer information. Although most survivors prefer receiving cancer information from their HCP, many turn to a variety of other sources, primarily the Internet. PRACTICE IMPLICATIONS: HCPs should periodically assess information seeking behaviors and preferences of cancer survivors and actively refer patients to the Internet as an extension of and enhancement to their patient interactions. Credible and useful websites could be identified and recommended by the HCP as a means to address some of the barriers identified by survivors.