Grieving the Loss of a Child and the Use of Online Social Support: An Exploratory Survey Study.

PURPOSE: To describe social media online grief supports, accessing behaviors, psychosocial variables, and feelings of support among individuals grieving the loss of a child aged <18 years. METHOD: This online survey study recruited 26 adults grieving the loss of a child using social media. Dependent variables included feelings of support and frequency of access. Independent variables included sleep disturbance, cognitive function, depression, anxiety, and self-efficacy to manage emotions (SEMA). Data were collected from May to September 2018. RESULTS: Participants' T scores were higher in level of sleep disturbance (mean = 59.4, SD = 6.1), depression (mean = 62.1, SD = 6.1), and anxiety (mean = 62.8, SD = 7.9), and lower in cognitive function (mean = 37.4, SD = 7.3) and SEMA (mean = 39.3, SD = 5.7). SEMA showed a positive correlation with feeling emotionally supported (p = 0.034). Participants who were accessing online grief supports more frequently reported higher levels of emotional support (F = 9.31, p = 0.006). CONCLUSION: Current findings will help guide the design of online grief support interventions for individuals grieving the loss of a child. [Journal of Psychosocial Nursing and Mental Health Services, xx(xx), xx-xx.].

Disparities in Advance Directive Documentation for Rural-Dwelling Persons With Lung Cancer.

Purpose: Advance directives (AD) are recommended for persons with lung cancer, yet few studies have investigated AD and healthcare power of attorney (HCPOA) documentation for this population in rural regions of the United States. The purpose of this study was to examine demographic and clinical factors associated with AD and HCPOA documentation for persons with lung cancer in rural eastern North Carolina (ENC). Methods: A cross-sectional retrospective chart review was conducted to collect demographic and clinical data from electronic health records from 2017 to 2021 at a tertiary cancer center and regional satellite sites in ENC. Descriptive statistics and Chi-Square Tests of Independence were used for data analysis. Findings: The sample's mean age was 69.5 years (n = 402, SD = 10.5, range = 28 - 92). Most participants were male (58%) and had a smoking history (93%). Consistent with regional population statistics, 32% of persons were black, and 52% lived in rural counties. Just 18.5% of the sample had a documented AD and 26% had a healthcare power of attorney. Black persons had significantly lower AD and HCPOA (P < .001) documentation than white persons. Rural-dwellers had significantly lower HCPOA documentation than urban-dwellers (P = .03). For all other variables, no significant differences were found. Conclusions: These findings suggest that AD and HCPOA documentation are low for persons with lung cancer in ENC, particularly for black persons and rural-dwellers. This disparity highlights the need for enhanced advance care planning (ACP) access to and outreach in the region.

An Examination of Cognitive Function Abilties in Bereaved Adults.

Grieving individuals experience changes in cognitive function. The purpose of this study was to examine factors that are associated with a decline in cognitive function in grieving adults. Questionnaires for sleep, depression, anxiety, self-efficacy to manage emotions, and cognitive function were completed. 69% of the grieving adults (N = 134) reported a decline in cognitive function. Anxiety and self-efficacy to manage emotions were associated cognitive function abilities (RMSE = 6.32, AdjRSQ = .32, AIC = 486.12). Bereavement programs may want to consider adding existing interventions, to improve anxiety and self-efficacy to manage emotions.

Gag order laws threaten nursing education and health equity.

Since 2021, some state legislators have passed laws that limit what public institutions can teach about discrimination. The number of these laws, also called gag orders, is increasing despite a national outcry against racism, homophobia and transphobia, and other forms of discrimination. Many nursing and other professional healthcare organizations have recognized and published statements decrying racism in healthcare and calling for an increased focus on health disparities and advancing health equity. Similarly, national research institutions and private grant funders are funding health disparities research. Nursing and other faculty in higher education, however, are being gagged by laws and executive orders which prevent them from teaching and conducting research about historic and contemporary health disparities. This commentary seeks to highlight the immediate and long-term impact of academic gag orders and to encourage action in opposition of such legislation. Supported by professional codes of ethics and discipline-specific education, we present concrete activities readers can use to address gag order legislation and in doing so, protect patient and community health outcomes.

Prevalence and health outcomes in community-dwelling older adults with comorbid cancer and dementia: a longitudinal analysis.

OBJECTIVES: To examine health outcomes in community-dwelling older adults with: dementia only, cancer only, and comorbid cancer and dementia. METHODS: Longitudinal analysis was conducted using data from 2010 to 2016 waves of the Health and Retirement Study. Health outcomes included mortality, limitations in activities of daily living (ADL) and instrumental activities of daily living (IADL), nursing home utilization, hospital stay, homecare use, self-rated health, and out-of-pocket medical expenditure. Panel regression was used for statistical analysis. RESULTS: The prevalence of comorbid cancer and dementia ranged from 2.56% to 2.97%. Individuals with comorbid cancer and dementia demonstrated a higher likelihood of nursing home utilization and poorer self-rated health but a lower likelihood of hospital stay, homecare use, and out-of-pocket expenditures, compared to the cancer only or dementia only groups. The differences in mortality and ADL and IADL limitations were not statistically significant. CONCLUSION: Comorbid cancer and dementia predicted longer nursing home utilization and poorer self-rated health. The results help guide care planning for individuals with comorbid cancer and dementia.

Financial interventions for family caregivers of individuals with chronic illness: a scoping review protocol.

INTRODUCTION: There are 53 million caregivers in the USA providing informal care for individuals with chronic illnesses. These caregivers contribute significantly to the healthcare system, yet they may experience adverse consequences due to caregiving, including financial burden. The purpose of this scoping review is to fill a research gap on understanding the nature and effect of financial interventions for family caregivers. METHODS AND ANALYSIS: This study will use the Arksey and O'Malley scoping review framework to systematically search for articles in MEDLINE, PubMed, CINAHL Complete, Cochrane Library, PsycINFO, Dissertations & Theses Global, and Web of Science during April 2022. Articles published from 1997 to the present will be included for the review. Data from articles will be extracted and summarised for financial intervention nature, scope, measurement, effect and health system context. ETHICS AND DISSEMINATION: This study does not include human subjects; therefore, no ethical review will be undertaken. Findings will be disseminated in scholarly journals and at caregiving and ageing conferences, such as the Gerontological Society of America.

Disparities in Comorbidities in Lung Cancer: Findings From the Behavioral Risk Factor Surveillance System.

BACKGROUND: In persons with lung cancer, sex and race are independent predictors of comorbidities and are associated survival. It is unclear how comorbidity profiles differ across sex and race. OBJECTIVE: The objective was to examine comorbidity differences between men and women and Blacks and Whites. METHODS: Data from the 2014, 2016, 2017, and 2018 Behavioral Risk Factor Surveillance System were analyzed using descriptive statistics, χ2 test of independence, and multiple logistic regression. Variables included sociodemographics and comorbidities. RESULTS: Among individuals with lung cancer (N = 594), men were more likely to experience a heart attack (odds ratio [OR], 3.59; 95% confidence interval [CI], 1.62-7.96) and diabetes (OR, 2.83; 95% CI, 1.57-5.10) and less likely to experience depressive disorder (OR, 0.360; 95% CI, 0203-0.637). Black men (OR, 28.57; 95% CI, 9.22-88.55) and women (OR, 2.48; 95% CI, 1.02-6.05) were more likely to have a history of stroke. CONCLUSION: Findings show that there may be differences in patterns of comorbidities among individuals with lung cancer. As we continue to move toward individualized medicine in cancer care, future work in this area should examine social determinants of health and how they may influence the patterns of comorbidities. IMPLICATION FOR NURSES: Although nurses may be aware that certain groups have an increased risk for certain comorbid conditions, this study highlights what groups with lung cancer may be more likely to have certain comorbidities. Nurses can assess individuals for comorbidities and provide education on how to manage comorbidities during cancer treatment.

Using Participatory Action Research to Sustain Palliative Care Knowledge and Readiness Among Latino Community Leaders.

OBJECTIVE: We examined the effectiveness of nurse-led training on palliative care knowledge and advance care planning readiness with Latino leaders. METHODS: As part of a larger participatory action research study, we used a one-group, pretest-posttest design to evaluate Latino leaders' preparation to share information during home visits with Latinos with advanced cancer. Using Spanish and English materials, 2 palliative care nurse specialists provided a 10-hour training plus a 6-month, post-training booster session. The Palliative Care Knowledge Scale (PaCKS) was administered at baseline (T0), post-training (T1), and 10 months post-training (T2). The Advance Care Planning and Engagement Survey (ACPES) was administered at T0 and T2. RESULTS: Among the 15 leaders, 93% were women and 73% were of Mexican heritage. There was a significant increase in the PaCKS score between T0 and T1 (MdT0 = 10; MdT1 = 12, z = -2.15, pexact = .031) and T0 and T2 (z = -2.49, pexact = .008) with a medium-to-large effect size (r = .45). There was a significant increase in ACPES scores between T0 and T2. CONCLUSIONS: Nurse-led training of Latino community leaders improves palliative care knowledge and may bolster the palliative care infrastructure in emerging Latino communities.

An integrative review of physical activity in adults with inflammatory bowel disease.

Adults with inflammatory bowel disease (IBD) search for self-management strategies to manage their symptoms and improve their quality of life (QOL). Physical activity (PA) is one of the self-management strategies widely adopted by adults with IBD. This integrative review aimed to synthesize the evidence on health outcomes of PA in adults with IBD as well as to identify the barriers to engaging in PA. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), published literature was searched to identify the articles that addressed PA in adults with IBD. Twenty-eight articles met the inclusion criteria. Many of the reviewed studies used the terms of PA and exercise interchangeably. Walking was the most common PA reported in the studies. The findings from the majority of the reviewed studies supported the benefits of moderate-intensity exercise/PA among adults with IBD. The reviewed studies noted the following positive health outcomes of PA: improvement in QOL, mental health, sleep quality, gastrointestinal symptoms, fatigue and cardiorespiratory fitness. More importantly, participation in PA reduced the risk for development of IBD and the risk for future active disease. The findings from the reviewed studies highlighted the following barriers to engage in PA: fatigue, joint pain, abdominal pain, bowel urgency, active disease and depression.

Call the Rezadora: Aiding Latino Families at the End of Life.

INTRODUCTION: The rezadora, a lay spiritual leader, provides support to Latino families as they provide end-of-life (EOL) care for loved ones. The purpose of this study was to learn about the work of the rezadora in Guatemala as a resource for Latinos with serious illness in the United States. METHODS: An ethnographic exploratory case study was conducted during summer 2018 in rural Guatemala. We interviewed three rezadoras who resided in two villages. The study yielded two cases, the single case and the paired case, which allowed for a holistic view of how the rezadora serves the community. RESULTS: Content and thematic analysis led to two themes: Essence of being called and Power of prayerful song. Essence of being called was represented by the prominence of the rezadora and their perpetual faith work. Power of prayerful song was characterized through the mission, customs, and the presence of the rezadora. A good death was aided by the rezadora in this context. CONCLUSIONS: As the Latino population ages in place, the need for palliative and EOL care services will increase. Lay spiritual leaders could enhance the palliative care teams in these communities and improve the quality of life for Latinos with serious illness.

Influencing Factors of Inflammatory Bowel Disease-Fatigue: A Path Analysis Model.

BACKGROUND: Fatigue is a common symptom in adults with inflammatory bowel disease (IBD) and is influenced by many physiological, psychological, and situational factors. However, the influencing factors of fatigue associated with IBD have not been evaluated. OBJECTIVE: This study aims to examine factors associated with fatigue during IBD and develop a parsimonious model that describes the influencing factors of fatigue. METHODS: The study was a secondary analysis of cross-sectional data obtained from IBD Partners, an online cohort of adults with the disease, including 12,053 eligible participants. Data were collected using the Patient-Reported Outcomes Measurement Information System short-form scales measuring fatigue, sleep disturbances, pain interference, anxiety, depression, and satisfaction with social roles. Physical activity was measured using a single question. Demographic and clinical variables were collected. Path analysis was computed to identify the direct and indirect effects of situational, physiological, and psychological factors on IBD-fatigue based on the middle range theory of unpleasant symptoms' conceptual framework. RESULTS: Most of the participants were White females. The data best fit a model with situational factors (physical activity and satisfaction with social roles as the mediators). The direct effect of IBD activity, age, sleep disturbances, pain interference, anxiety, and depression on IBD-fatigue was significant. Significant indirect effects were noted on IBD-fatigue from sleep disturbances, pain interference, and depression via physical activity and satisfaction with social roles. DISCUSSION: The study identified two important intervening variables from the tested model. In addition, other symptoms such as sleep, pain, anxiety, and depression are essential and also influence IBD-fatigue.

Four Kinds of Hard: An Understanding of Cancer and Death among Latino Community Leaders.

Early integration of palliative care after a diagnosis of cancer improves outcomes, yet such care for Latino populations is lacking in rural regions of the United States. We used a participatory action research design with Latino community leaders from emerging immigrant communities in North Carolina to explore sociocultural perspectives on cancer and death. Thematic analysis was conceptualized as Four Kinds of Hard represented by four themes: Receiving an Eviction Notice, Getting in the Good Book, Talking is (Sometimes) Taboo, and Seeing Their Pain Makes us Suffer. These themes captured fears of deportation, coping with cancer through faithfulness, ambivalence about advance care planning, and a desire to spare families from suffering. Findings suggest strategies to improve conversations about end-of-life wishes when facing advanced illness and death. This study demonstrates the importance of training Latino community leaders to improve palliative care and bridge service gaps for Latino families living in emerging rural communities.

Developing a theoretically grounded, digital, ecological momentary intervention for parental bereavement care using the ORBIT model-Phase 1.

Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.

Chemotherapy in the Last 30 Days and 14 Days of Life in African Americans With Lung Cancer.

BACKGROUND: African Americans with lung cancer are diagnosed at later stages and have high mortality rates. Chemotherapy is considered aggressive treatment near the end of life and prevents enrollment in hospice. OBJECTIVES: This study explored chemotherapy in the last 30 and 14 days of life among African Americans with lung cancer. METHODS: A retrospective chart review was used to gather sociodemographic and treatment data on persons newly diagnosed with lung cancer between January 1, 2016 and June 30, 2017. African Americans with a documented date of death were included. RESULTS: The mean age (N=74) was 64.0 years, 58.1% were rural dwellers, and 59.5% had Medicare. Most had advanced stage non-small cell lung cancer (Stage IIIB, 18.8%; Stage IV, 46.4%). In this study, 17.6% received chemotherapy in the last 14 days of life and 27.0% received chemotherapy in the last 30 days of life. No significant associations between age, sex, residence (rural vs urban) and receipt of chemotherapy in the last 14 or 30 days of life were found. A significant association was found between type of insurance and chemotherapy in the last 14 or 30 days of life: Medicare was associated with chemotherapy in both last 14 days of life χ2(1) = 4.448, p = .035 and last 30 days of life χ2(1) = 4.773, p = .029. A binomial logistic regression using demographic factors, including insurance, was not significant. CONCLUSION: Our results indicate a need for improvement in the number of individuals who receive chemotherapy in the final month of life.

Using Demographics to Predict Palliative Care Access in Inpatient Facilities in Rural North Carolina.

PURPOSE: For individuals with cancer, palliative care improves quality of life, mood, and survival. Rural residents experience limited access to palliative care. In eastern North Carolina, a rural area, little is known about access to inpatient cancer-related palliative care. This study describes access to inpatient palliative care and developed a predictive model of who was most likely to be admitted to an inpatient facility without a palliative care provider. METHODS: A descriptive, exploratory design was used to examine demographics, clinical variables, and inpatient admissions from 2017 and 2018, in a major regional teaching hospital system that included 8 hospitals (7 rural hospitals). Descriptive statistics and a binary logistic regression were used to analyze data. FINDINGS: The mean age was 62.2 years (N = 2,161, range: 18-88, SD = 15.52): 49.4% were female, 54% lived in a rural county, and 44.4% were black. The outlying rural hospitals, with no palliative care providers on staff, had 388 admissions (18%). Only gender (P = .0128), county (P < .0001), and age (P < .05) contributed to the logistic model. The predicted probability of being admitted to an inpatient facility with a palliative care provider is higher for younger males living in urban counties. That probability decreases with age regardless of the gender or type of county. CONCLUSIONS: These findings highlight the limited availability of inpatient palliative care for those with cancer. Women, older adults, and rural residents are more likely to be admitted to 1 of the 7 rural hospitals with no palliative care provider on staff.

Dimensions of Distress in Lung Cancer.

OBJECTIVES: To (a) compare the domains of distress between patients who were distressed and patients who were not distressed and (b) examine the relationship between the National Comprehensive Cancer Network Distress Thermometer and Problem List for Patients (DT-PL) and the Hospital Anxiety and Depression Scale (HADS) in individuals with advanced lung cancer. SAMPLE & SETTING: Individuals with advanced lung cancer receiving chemotherapy were recruited from a comprehensive cancer center in the southeastern United States. METHODS & VARIABLES: A cross-sectional, descriptive, exploratory design was used. Individuals with lung cancer completed the DT-PL and the HADS. Data were analyzed using descriptive statistics, t tests, and chi-square analysis. RESULTS: Significant differences were found between the nondistressed group and the clinically distressed group in three domains of distress. IMPLICATIONS FOR NURSING: Distress in individuals with advanced lung cancer goes beyond psychological stressors and includes family problems and physical problems.

Social media as a recruitment method to reach a diverse sample of bereaved parents.

BACKGROUND: Recruiting a diverse group of parents who are grieving the loss of a child into research is challenging. Social media users represent all demographic groups in the United States. Online platforms, such as Facebook and Twitter, may be one potential method to reach and recruit a diverse group of bereaved parents. To our knowledge, this is the first known article to describe social media as a recruitment mechanism for bereaved parents. PURPOSE: The purpose of this paper is to describe 1) how the social media platforms of Facebook and Twitter were used to recruit bereaved parents into a cross-sectional, online survey, and 2) the effectiveness of social media as a recruitment tool for this population. CONCLUSIONS: Social media has the potential to be an effective recruitment tool to reach a diverse group of users. More research is needed, however, to determine the best methods to reach fathers as well as racial and ethnic minorities.

Stigma and Quality of Life in Patients With Advanced Lung Cancer.

OBJECTIVES: To identify groups of participants with high and low levels of stigma and to examine the influence of stigma on social support, social constraints, symptom severity, symptom interference, and quality of life (QOL). SAMPLE & SETTING: 62 individuals with lung cancer were identified and recruited from a comprehensive cancer center in the southeastern United States. METHODS & VARIABLES: Participants completed a questionnaire that included demographic information and measures of stigma, symptom severity and interference, social support, social constraints, and QOL. IBM SPSS Statistics TwoStep Cluster Analysis was used to identify high- and low-stigma groups. Independent sample t tests were used to compare differences between the groups. RESULTS: 22 participants had a high level of stigma; they had significantly higher symptom severity on feeling distressed, problems remembering things, and feeling sad, and greater symptom interference related to mood, relations with others, and enjoyment of life. Participants also had significantly higher levels of social support and lower social constraints. Stigma was significantly related to lower levels of QOL. IMPLICATIONS FOR NURSING: Nurses should be aware that stigma may influence various factors throughout the disease trajectory; they can privately assess individuals with lung cancer for access to social supports, feelings of stigma, and QOL, and make appropriate referrals as needed.

Health Disparities in Hospice Utilization and Length of Stay in a Diverse Population With Lung Cancer.

BACKGROUND: Lung cancer is the leading cause of cancer deaths globally. Individuals are diagnosed at an advanced stage with limited life expectancy. OBJECTIVES: To explore potential health disparities in hospice utilization and length of stay (LOS) in a diverse sample of patients with lung cancer. METHODS: Demographic and clinical information as well as data for hospice utilization and LOS was extracted from electronic health records. Data were analyzed using descriptive statistics, χ2 tests, and an analysis of variance test. RESULTS: Data from 242 patients were analyzed. In the sample, 33% (n = 80) were Black and 51% (n = 124) lived in a rural county. At the time of data collection, 67% of the sample was deceased and 36% (n = 86) chose to enroll in hospice. No disparities were found for race, age, gender, or rural/urban dwellers in hospice enrollment. No disparities were found for race, gender, or rural/urban dwellers for hospice LOS. Age was associated with hospice LOS ( P = .004). Those who were older were more likely to have a longer LOS. CONCLUSION: Hospice utilization and LOS were low for all groups with lung cancer in a geographically and racially diverse region of the United States. Given the rates of mortality in lung cancer, discussions about the goals and benefits of hospice care may be beneficial and should be part of an ongoing dialogue throughout the disease trajectory.

Post-Treatment Symptoms of Pain, Anxiety, Sleep Disturbance, and Fatigue in Breast Cancer Survivors.

BACKGROUND: In part because of improvements in early detection and treatment, the number of breast cancer survivors is increasing. After treatment, however, breast cancer survivors often experience distressing symptoms, including pain, sleep disturbance, anxiety, and fatigue; at the same time, they have less frequent contact with health care providers. Pain commonly co-occurs with other symptoms and the combination of symptoms contribute to the amount of distress experienced by survivors. Previous studies of post-treatment symptoms include primarily urban and white women. AIMS: The purpose of this study was to describe the post-treatment cluster of symptoms, to examine the correlations among these symptoms, and to examine the role pain intensity may play in understanding the variation in sleep disturbance, fatigue, and anxiety in a racially diverse sample of rural breast cancer survivors. DESIGN: The theoretical framework for this descriptive correlational study was the theory of unpleasant symptoms. SETTINGS: Outpatient university-affiliated cancer clinic. PARTICIPANTS/SUBJECTS: Forty women who were between 6 months and 5 years post breast cancer diagnosis. METHODS: Participants completed the following self-report instruments: Patient Reported Outcomes Measurement Information System of pain intensity, pain interference, anxiety, and sleep disturbance and the Piper Fatigue Short Form 12. RESULTS: The average age of participants was 58 years, and 57.5% were black. Most women reported sleep disturbance (78%), pain interference (68%), and pain intensity (63%) above the national average for an American adult. Black women reported higher pain intensity than whites. There were moderate to strong correlations among the symptoms (range r = 0.35-0.89). CONCLUSIONS: Nurses and health care providers in primary care settings need to screen for symptoms, and nursing interventions are needed to assist breast cancer survivors to manage distressing symptoms.