Sleep and Caregiver Burden Among Caregivers of Persons Living With Dementia: A Scoping Review.

Background and Objectives: Caregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep. Research Design and Methods: We conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized. Results: The search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain. Discussion and Implications: Although subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.

Examining the roles of travel distance, medical mistrust, and cancer fatalism in the uptake of clinical cancer prevention among women in rural and urban US communities: A secondary data analysis.

Introduction: Rural adults are less likely to receive cancer screening than urban adults, likely due to systematic differences in community- and individual-level factors. The purpose of this study was to analyze the relative contributions of rurality, travel time, medical mistrust, and cancer fatalism in explaining uptake of clinical cancer prevention services. Methods: We conducted a secondary data analysis of 2019-2020 survey data from women, ages 45-65, in rural and urban counties in central Pennsylvania, examining rurality, travel time to a primary care provider, medical mistrust, and cancer fatalism, as well as uptake of guideline-recommended colorectal cancer screening, cervical cancer screening, and preventive check-up. Final models used multivariable logistic regression to assess the relationships among study variables, controlling for participant demographics. Results: Among 474 participants, 48.9 % resided in rural counties. Most participants had received clinical cancer prevention services (colorectal cancer screening: 55.4 %; cervical cancer screening: 82.8 %; preventive check-up in the last year: 75.4 %). Uptake of services was less common among participants with higher medical mistrust (colorectal cancer screening: adjusted odds ratio [aOR] = 0.87, 95 % confidence interval [CI] = 0.76-1.00; cervical cancer screening: aOR = 0.79, 95 % CI = 0.63-1.00; last-year check-up: aOR = 0.74, 95 % CI = 0.63-0.88). Conclusions: Patient attitudes, particularly medical mistrust, may contribute to rural/urban disparities in clinical cancer prevention among women. Community- and individual-level interventions are needed to improve cancer outcomes in rural areas.

Hospital- and county-level characteristics explain geographic variability in prices of cancer-related procedures: Implications for policy and interventions.

BACKGROUND: Healthcare costs in the U.S. are high and variable, which can hinder access and impact health outcomes across communities. This study examined hospital- and county-level characteristics to identify factors that explain geographic variation in prices for four cancer-related procedures. METHODS: Data sources included Turquoise Health, which compiles publicly-available price data from U.S. hospitals. We examined list prices for four procedures: abdominal ultrasound, diagnostic colonoscopy, brain MRI, and pelvis CT scan, which we linked to characteristics of hospitals (e.g., number of beds) and counties (e.g., metropolitan status). We used multilevel linear regression models to assess multivariable relationships between prices and hospital- and county-level characteristics. Supplementary analyses repeated these models using procedures prices for commercial insurance plans. RESULTS: For each procedure, list prices varied across counties (intraclass correlation: abdominal ultrasound = 23.2%; colonoscopy = 17.1%; brain MRI = 37.2%; pelvis CT = 50.9%). List prices for each procedure were associated with hospital ownership (all p < 0.001) and percent of population without health insurance (all p < 0.05). For example, list prices for abdominal ultrasound were higher for proprietary versus Government-owned hospitals (ß = 539.10, 95% confidence interval [CI]: 256.12, 822.08, p < 0.001) and for hospitals in counties with more uninsured residents (ß = 23.44, 95% CI: 2.55, 44.33, p = 0.03). Commercial insurance prices were negatively associated with metropolitan status. CONCLUSIONS: Prices for cancer-related healthcare procedures varied substantially, with considerable heterogeneity associated with county location as well as county-level social determinants of health (e.g., health insurance coverage). Interventions and policy changes are needed to alleviate the financial burden of cancer care among patients, including geographic variation in prices for cancer-related procedures.

Rural Cancer Survivors' Perceptions of a Nurse-Led Telehealth Intervention to Manage Cancer-Related Distress.

OBJECTIVES: To understand rural survivors' experiences of participating in a nurse-led telehealth visit designed to address cancer-related distress. SAMPLE & SETTING: 25 rural-dwelling, post-treatment adult survivors of head and neck cancer recruited from a cancer center clinic affiliated with an academic health system serving a rural catchment area in the southeastern United States. METHODS & VARIABLES: A descriptive multimethod approach using semistructured qualitative interviews and the Telemedicine Satisfaction and Usefulness Questionnaire. RESULTS: Three primary themes emerged from the qualitative interviews, related to trust, access to information, and technology barriers. Quantitative findings indicated high satisfaction with the nurse-patient relationship through telehealth and lower satisfaction with using telehealth equipment to connect to a visit. IMPLICATIONS FOR NURSING: Despite facing technology barriers, rural cancer survivors prioritize speaking with an oncology certified nurse through telehealth. Although they may be willing to be open and vulnerable with an oncology nurse about their distress, rural survivors are less likely to accept a referral to another provider of psychosocial care. Nurses can incorporate warm handoffs to increase psychosocial referral uptake for rural survivors.

Cancer-Related Distress: Symptom Clusters in Rural Head and Neck Cancer Survivors.

BACKGROUND: Rural post-treatment head and neck cancer (HNC) survivors experience high rates of cancer-related distress and may experience unique symptom clusters. Oncology nurses can benefit from a better understanding of the symptom clusters that HNC survivors experience. OBJECTIVES: The purpose of this secondary data analysis was to identify symptom clusters of cancer-related distress in rural HNC survivors. METHODS: Secondary data analysis was conducted with survey data collected from rural HNC survivors (N = 20). Distress symptoms were measured using the National Comprehensive Cancer Network Distress Thermometer and Problem List, amended for a population with HNC. Symptom clusters were defined as two or more co-occurring symptoms and evaluated based on participant-reported severity using exploratory factor analysis. Resultant clusters were assessed for theoretical and clinical appropriateness. FINDINGS: Preliminary analysis suggests rural HNC survivors experience eight symptom clusters. As a first step, the results of this study can help nurses to identify symptom clusters in rural HNC survivors.

Barriers and facilitators to resilience for rural cancer survivors during COVID-19.

The purpose of this study was to identify the barriers and facilitators of resilience for rural cancer survivors during COVID-19. A descriptive qualitative study design was used to achieve the study objected. We recruited six posttreatment cancer survivors, four caregivers of cancer survivors, and one survivor who also identified as a caregiver, all from rural Southwest Virginia. Participants completed 60-90 minute virtual interviews that were recorded, transcribed, and verified in Dedoose qualitative software. Data was analyzed using an inductive and deductive coding strategies, and thematic analysis was used to develop key themes. Four key themes emerged from the data: 1) Religious faith is a primary source of resilience, 2) Spiritual cancer care strengthens resilience, 3) Virtual platforms provide critical connections to faith communities, and 4) Fearful and fatalistic cancer beliefs reduce resilience. The findings provide critical descriptive evidence that faith facilitates resilience for rural cancer survivors, while rural cultural norms of fearful and fatalistic cancer beliefs reduce resilience. In the context of COVID-19, rural survivors prioritize utilizing virtual support groups to strengthen their resilience. Nurses should incorporate a spiritual assessment into survivorship care, and guide survivors to existing virtual support groups.

A Telemedicine-Delivered Nursing Intervention for Cancer-Related Distress in Rural Survivors.

OBJECTIVES: To evaluate preliminary efficacy, fidelity, and integrity of data collection of a nurse-led, telemedicine-delivered video visit intervention aimed at improving management of rural survivors' cancer-related distress symptoms. SAMPLE & SETTING: 21 rural survivors participated in a nurse-led telemedicine intervention delivered six weeks after the end of active cancer treatment. METHODS & VARIABLES: Participants' symptom management was measured with the Short Form Survivor Unmet Needs Survey, a four-factor, 30-item instrument that measures the unmet needs of adult survivors. Data were collected preintervention and six weeks postintervention. RESULTS: The mean difference between pre- and postintervention survey scores was -0.24, representing an overall improvement in management of unmet needs. The unmet emotional needs domain had the highest mean preintervention score and the largest mean reduction. All effect sizes were small. IMPLICATIONS FOR NURSING: A nurse-led, telemedicine-delivered video visit intervention may improve rural survivors' symptom management during early survivorship. Comparison with a control group using a sample size powered to detect clinically meaningful differences is an important next step to fully evaluate the impact of this model of care.

Self-reliance, Social Norms, and Self-stigma as Barriers to Psychosocial Help-Seeking Among Rural Cancer Survivors With Cancer-Related Distress: Qualitative Interview Study.

BACKGROUND: Even when technology allows rural cancer survivors to connect with supportive care providers from a distance, uptake of psychosocial referrals is low. Fewer than one-third of participants in a telemedicine intervention for identifying rural survivors with high distress and connecting them with care accepted psychosocial referral. OBJECTIVE: The purpose of this research was to examine the reasons for which rural cancer survivors did not accept a psychosocial referral. METHODS: We utilized a qualitative design to address the research purpose. We interviewed participants who had been offered psychosocial referral. Semistructured interviews were conducted 6 weeks later (n=14), and structured interviews were conducted 9 months later (n=6). Data were analyzed descriptively using an inductive approach. RESULTS: Ultimately, none of the rural cancer survivors (0/14, 0%) engaged with a psychosocial care provider, including those who had originally accepted referrals (0/4, 0%) for further psychosocial care. When explaining their decisions, survivors minimized their distress, emphasizing their self-reliance and the need to handle distress on their own. They expressed a preference for dealing with distress via informal support networks, which was often limited to close family members. No survivors endorsed public stigma as a barrier to accepting psychosocial help, but several suggested that self-stigma associated with not being able to handle their own distress was a reason for not seeking care. CONCLUSIONS: Rural cancer survivors' willingness to accept a psychosocial referral may be mediated by the rural cultural norm of self-reliance and by self-stigma. Interventions to address referral uptake may benefit from further illumination of these relationships as well as a strength-based approach that emphasizes positive aspects of the rural community and individual self-affirmation.

Examination of a distress screening intervention for rural cancer survivors reveals low uptake of psychosocial referrals.

PURPOSE: To determine the impact of a telemedicine-delivered intervention aimed at identifying unmet needs and cancer-related distress (CRD) following the end of active treatment on supportive care referral patterns. METHODS: We used a quasi-experimental design to compare supportive care referral patterns between a group of rural cancer survivors receiving the intervention and a control group (N = 60). We evaluated the impact of the intervention on the number and type of referrals offered and whether or not the participant accepted the referral. CRD was measured using a modified version of the National Comprehensive Cancer Network Distress Thermometer and Problem List. RESULTS: Overall, 30% of participants received a referral for further post-treatment supportive care. Supporting the benefits of the intervention, the odds of being offered a referral were 13 times higher for those who received the intervention than those in the control group. However, even among the intervention group, only 28.6% of participants who were offered a referral for further psychosocial care accepted. CONCLUSIONS: A nursing telemedicine visit was successful in identifying areas of high distress and increasing referrals. However, referral uptake was low, particularly for psychosocial support. Distance to care and stigma associated with seeking psychosocial care may be factors. Further study to improve referral uptake is warranted. IMPLICATIONS FOR CANCER SURVIVORS: Screening for CRD may be inadequate for cancer survivors unless patients can be successfully referred to further supportive care. Strategies to improve uptake of psychosocial referrals is of high importance for rural survivors, who are at higher risk of CRD.

Beyond broadband: digital inclusion as a driver of inequities in access to rural cancer care.

PURPOSE: Rural cancer survivors have worse quality of life than their urban counterparts. Telemedicine is a potential solution to connecting rural residents with specialized cancer providers during the survivorship period, but limitations in broadband may stifle the impact. Using data from a feasibility study evaluating a telemedicine intervention aimed at connecting rural Virginia cancer survivors with their care team located at a cancer center associated with an academic medical center, we sought to evaluate the ability of rural survivors to access the intervention and suggest strategies for improving access to rural cancer survivorship care. METHODS: We used a descriptive design with geospatial and quantitative methods to understand broadband access, driving time to a satellite telemedicine site, and ability to utilize a borrowed cellular-enabled tablet to participate in the intervention for cancer survivors living in Central Virginia. RESULTS: Our study participants resided in census tracts where an average of 58% of households have adequate broadband access necessary to support a telemedicine videoconferencing intervention. Average driving time to the nearest telemedicine site was 29.6 min. Those who utilized the borrowed tablet experienced considerable difficulty with utilizing the technology. CONCLUSIONS: Rural cancer populations do not have equal access to a cancer survivorship telemedicine intervention. IMPLICATIONS FOR CANCER SURVIVORS: Telemedicine interventions aimed at connecting cancer survivors with their academic medical center-based cancer providers may be ineffective if survivors do not have access to either fixed broadband or a satellite clinic. Future research needs to evaluate other sites from which rural survivors can connect, such as rural public libraries.