Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers' perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, "local" hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

Family caregiving experiences with hospice lung cancer patients compared to other cancer types.

BACKGROUND: Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences. OBJECTIVES: This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types. METHOD: This study is based on a secondary analysis of data generated from a parent study evaluating a behavioral intervention with caregivers of hospice cancer patients. RESULTS: When comparing caregiving experiences by patient diagnosis, significant differences were found in caregivers of hospice lung cancer demographics and experiences with caregiver-centered communication. Specifically, caregivers of lung cancer patients have significantly more trouble with exchange of information, fostering relationships, and decision making with their hospice team. CONCLUSION: More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues.

Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.

PURPOSE: Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings. METHODS: The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams. RESULTS: Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied. CONCLUSION: Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff. TRIAL REGISTRATION: This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

BACKGROUND: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. AIM: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status. DESIGN: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. SETTING/PARTICIPANTS: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. RESULTS: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described "fair" or "poor" sleep quality, with "interrupted" sleep and frequent night-waking due to "on-call" "vigilance" and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. CONCLUSION: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Older Adult Engagement With Facebook® Interventions: A Challenge for Nursing Research.

Facebook® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [Journal of Gerontological Nursing, 48(7), 10-17.].

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer.

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.Design: Secondary qualitative data analysis.Sample: 58 family caregivers of hospice patients with advanced cancer.Methods: Template analysis of individual family caregiver interviews.Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

ENVISION: A Tool to Improve Communication in Hospice Interdisciplinary Team Meetings.

Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers (n = 21) and family caregivers (n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [Journal of Gerontological Nursing, 46(7), 9-14.].

Behind the doors of home hospice patients: A secondary qualitative analysis of hospice nurse communication with patients and families.

OBJECTIVE: Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses' use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress. METHOD: Researchers performed a directed content analysis of audiorecordings of 65 hospice nurses' home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques. RESULT: All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques. SIGNIFICANCE OF RESULTS: Although hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.

A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers.

BACKGROUND: Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider-patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. AIM: We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. DESIGN: We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. SETTING/PARTICIPANTS: Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. RESULTS: Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. CONCLUSION: The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers.

A Strategy for Addressing Population Health Management.

CONTEXT: Population health management in the era of the Affordable Care Act focuses on identifying needs of health care service areas for targeted strategies. The United States has a "health disadvantage" compared with peer countries, particularly regarding obesity and women's life expectancy, while having high rates of mammography screening. Emphasizing lifestyle factors is a strategy to reduce one's risk of obesity and heart disease, as well as some breast cancers. OBJECTIVE: We explored perceptions of the risk of female population-based breast cancer mortality compared with heart disease mortality; perceived likelihood of developing breast cancer; and recognition of the association between modifiable lifestyle factors and breast cancer risk. DESIGN: Cross-sectional online survey. SETTING: Service area of one mid-Missouri health care system. PARTICIPANTS: Female US residents ages 35 to 49 years who did not have a personal history of any cancer. RESULTS: Minority women and women with a college education or less had greater odds of reporting that breast cancer, rather than heart disease, would cause more deaths in women this year. Women who had ever had a mammogram had greater odds of reporting a moderate/high compared with low likelihood of developing breast cancer. Women with less than a college education had greater odds of not knowing of any lifestyle behaviors or reporting only clinical behaviors related to reducing one's risk of breast cancer. CONCLUSIONS: The present study illuminates areas of lagging information dissemination that may be used for targeted strategies for population health management in the era of the Affordable Care Act, that of bridging healthy lifestyle strategies for heart health with messages for breast health.

Unique characteristics of informal hospice cancer caregiving.

PURPOSE: The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving. METHODS: Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N = 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient's diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables. RESULTS: Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life. CONCLUSIONS: While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers' needs.

Anxiety among informal hospice caregivers: an exploratory study.

OBJECTIVE: This study examined the prevalence of clinically significant anxiety among informal hospice caregivers and identified the characteristics of caregivers who experienced anxiety of this severity. METHOD: An exploratory secondary data analysis pooled from three separate studies of informal hospice caregivers (N = 433) was conducted. Researchers employed descriptive statistics to calculate anxiety prevalence and utilized logistic regression to model the associations between the covariates (i.e., caregiver characteristics) and anxiety. RESULTS: Overall, 31% of informal hospice caregivers reported moderate or higher levels of anxiety. Caregivers associated with the research site in the Northwest were less likely to be anxious than those in the Southeast [χ2(3, N = 433) = 7.07, p = 0.029], and employed caregivers were less likely to be anxious than unemployed caregivers (OR = 0.56, 95% CI = 0.33, 0.96). The likelihood of being anxious decreased with increasing physical quality of life (OR = 0.77, 95% CI = 0.69, 0.85), and younger female caregivers were more likely to be anxious than male caregivers and older females (OR = 0.95, CI = 0.91, 0.99). SIGNIFICANCE OF RESULTS: A noteworthy number of informal hospice caregivers experience clinically significant levels of anxiety. Increased efforts to screen and address anxiety in this population are recommended.

"It is the 'starting over' part that is so hard": Using an online group to support hospice bereavement.

OBJECTIVE: Although hospice agencies are required to provide informal caregivers (family or friends of the patient) with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. We employed the Dual Processing Model of Bereavement as a theoretical framework for assessing the potential of a secret Facebook group for bereaved hospice caregivers. METHOD: A mixed-methods approach was utilized to analyze online communication (posts and comments) in the secret Facebook group, and self-reported outcome measures on depression and anxiety were compared pre- and post-intervention. RESULTS: Sixteen caregivers participated in the secret Facebook group over a period of nine months. The majority of online talk was oriented to restoration, revealing abrupt and anticipated triggers that evoked feelings of loss. Caregivers also shared loss orientation through storytelling, sharing and giving advice, and encouraging others to manage the challenges of coping. Caregiver anxiety and depression were lower after the intervention. SIGNIFICANCE OF RESULTS: This pilot study provides insight into the use of a secret Facebook group to facilitate bereavement support to caregivers. Findings highlight the promise of Facebook for hospice bereavement support. Providers and researchers are encouraged to explore the positive outcomes associated with bereavement support.

Understanding social support burden among family caregivers.

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver's support needs and include assessment on the type of support to be offered.

Exploring aging-related stress among older spousal caregivers.

The goal of this study was to explore aging-related stress among older spousal caregivers providing hospice care for an older adult with cancer. Cases were selected from an ongoing randomized controlled trial that involved audiorecorded visits with caregivers over four different time points. Recordings consisted of caregivers discussing caregiving problems and ways they attempted to cope. Four caregiver cases comprising 16 audiorecordings were qualitatively analyzed for aging-related stress during caregiving. Caregiving stress primarily involved the patients' cognitive deficits. The caregiving experience also made older caregivers aware of their own aging and physical limitations, heightened self-imposed expectations to fulfill their role as spouse, and led them to consider their own mortality. This study informs development of caregiver interventions aimed at addressing the reciprocal challenge of caregiving and aging.

Getting comfortable with death. Evolution of the care of the dying patient.

In this article, we provide an overview of the historical evolution and ongoing transformation of care for the dying patient. We examine the rise of hospice and palliative care and its eventual designation as a formal discipline and discuss growing recognition of the need for earlier palliative care for the seriously ill. Finally, we consider potential future challenges in the delivery of care to the dying patient as health care continues to change over time.

Family Caregiver Communication and Perceptions of Involvement in Hospice Care.

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

BACKGROUND: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. OBJECTIVE: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. METHODS: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. RESULTS: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. CONCLUSION: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.

Background: Nearly half of more than 1.7 million older Americans who receive hospice care each year have a primary or comorbid diagnosis of dementia. Pain is often undertreated in this patient population owing to myriad factors, including unmet informational needs among family caregivers. Objective: We sought to inform the adaptation of a pain education intervention for hospice family caregivers to the context of dementia by eliciting feedback on the educational content covered in adapted intervention materials. Design: We conducted a multimethod, formative research study to inform the adaptation of an existing, evidence-based intervention. Setting/Subjects: The study included a purposively recruited sample (n = 33) of hospice professionals (n = 18) and family caregivers (n = 15) from across the United States. Measurements: Participants quantitatively rated the importance of each of the eight pain concerns presented in the adapted intervention materials (1 = not important to 3 = very important) and provided qualitative feedback via Zoom interview on the acceptability, clinical accuracy, and potential benefits of the adapted content. We analyzed quantitative data via descriptive statistics and qualitative data via content analysis. Results: Participants rated the adapted educational content as highly important (rangemean = 2.56-3.00), particularly regarding concerns about caregivers' pain assessment, communicating with the hospice team about pain, and addressing misinformation regarding pain medication outcomes. Participants also provided suggestions to strengthen specific educational messages to improve comprehension and uptake. Conclusions: Findings support the continued development and testing of the adapted intervention.