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.

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.

When Family Life Contributes to Cancer Caregiver Burden in Palliative Care.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network-especially other family-is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.

Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

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.

Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience.

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

The Effect of Internet Group Support for Caregivers on Social Support, Self-Efficacy, and Caregiver Burden: A Meta-Analysis.

INTRODUCTION: Family caregivers are socially isolated and burdened as they care for their loved one, often for many years. Internet support groups can address some of the barriers related to the social isolation, self-efficacy, and burden experienced during caregiving by connecting individuals with similar problems to one another. The purpose of the meta-analysis was to analyze the effect of Internet-based group support interventions on social support, self-efficacy, and burden. METHODS: A two-step search process was used to identify peer reviewed evidence to answer the research question. Multiple databases, including MEDLINE, Cochrane Database of Systematic Reviews, CINAHL, PsycINFO, and several others, were searched to identify systematic reviews from which to identify the final articles for data extraction. RESULTS: Seven systematic reviews identified 10 studies to answer the research question. A statistically significant effect was found from the interventions targeting social support and self-efficacy. We were unable to assess the effect of these interventions on caregiver burden due to the variance in measurement constructs. CONCLUSIONS: While it has been found that Internet group support interventions have a positive effect on social support and self-efficacy, the size and quality of studies are moderate, and thus, large-scale randomized controlled trials are needed for a higher level of evidence.

Role ambiguity among women providing care for ex-husbands.

Twenty-one women were interviewed regarding their caregiving experiences for ill or dying ex-husbands. Emergent in the analyses was the variety of ways in which they experienced role ambiguity as ex-wife caregivers. This article describes the role ambiguity ex-wife caregivers encountered interpersonally through interactions with network members, institutionally in dealing with professionals and the workplace, and intrapersonally in confusion over their roles and feelings. Consequences of role ambiguity are discussed, and recommendations for policy and practice are made in light of the aging population, changing family forms, and women's care roles.

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.

Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.

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.

Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients.

BACKGROUND: Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health. The purpose of this study is to assess the association between family interactions and depressive symptoms among family caregivers of cancer patients. METHODS: Secondary analysis of baseline data from an NIH-funded randomized control trial of family caregivers of cancer patients recruited from academic palliative care clinics at three sites (2 Midwest, 1 East). We tested for an association between caregiver responses to the Family Quality of Life in Dementia-Family Interactions Subscale and Patient-Reported Outcomes Measurement Information System Depression Short Form 8A using a block-wise approach to linear modeling. RESULTS: A total of 246 caregivers were included in analysis; caregivers were mostly White (82%), not Hispanic or Latina/o (96%), and female (65%), with an average age of 55 years. Overall, participants had high family interactions (mean 57.7, sd 11.7) and an average depressive symptom burden (t-score 52.4, SD 8.57). Family interactions was significantly negatively associated with depressive symptoms (b = -.163, se = .057) when accounting for relevant covariates. CONCLUSION: Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing.

An intervention to help older adults maintain independence safely.

Older adults who live alone are at risk for problems (e.g., falling, sudden illness). To maintain themselves safely at home they may benefit from planning to prevent problems. The purpose of this study was to evaluate an intervention designed to train family members or friends as to how to help older adults who were living alone make plans to maintain independence safely in their homes and to make behavioral and household changes to enhance safety. Support network members of 19 older adults randomly assigned to the intervention group were taught to use multiple segment vignettes to assist the older adults in creating plans for living safely. Older adults in the control group (n = 21) were asked to engage in an unstructured discussion about home safety with their network members. Older adults in the intervention group developed safer plans and made more household and behavioral changes than did control group adults.

"Each Day We Lose a Little More": Visual Depictions of Family Caregiving for Persons with Dementia.

More than 11 million Americans provide unpaid care for people with dementia (PWD) and need emotional, financial, and physical support. This study explored how participants in Caregiver Speaks, a social networking and image-based storytelling intervention designed to help caregivers make meaning of caregiving, described their caregiving experiences and needs. Strategies of thematic analysis were used to identify patterns in 28 different caregivers' images (N = 59) and text interactions on social media. Caregivers identified as white (71.4%), as women (92.9%), and as an adult child or child-in-law of the PWD (85.7%). Through images and text, caregivers explained interrelated changes in their behaviors (e.g., managing dual roles), thoughts (e.g., realizing severity of illness), and feelings (e.g., trapped) throughout the caregiving process. Findings reiterate that caregiving changes significantly over time, that visual storytelling helps to concretely capture those changes, and that interventions are needed to respond to caregivers' hardships across the caregiving time span.

Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment.

Dissemination and implementation of evidence-based interventions is best accomplished with input from stakeholders. This project used a Discrete Choice Experiment to determine the preferences of a nationwide sample of hospice social workers toward the most preferred way to scale the delivery of an online support group. While the majority of social workers preferred referring caregivers to online support groups facilitated outside their agency rather than to facilitate groups themselves, the results were not statistically significant. Social workers reported concerns with both options. Further work with stakeholders is needed to develop implementation strategies and determine the feasibility of both options.

Depressive Symptoms in Caregivers of Hospice Cancer Patients.

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.

OBJECTIVE: Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers. METHODS: Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls. RESULTS: Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors. CONCLUSIONS: Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider.

Access for Cancer Caregivers to Education and Support for Shared Decision Making (ACCESS) intervention: a cluster cross-over randomised clinical trial.

OBJECTIVES: The purpose of this study was to test an intervention named ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making). The intervention uses private Facebook support groups to support and educate caregivers, preparing them to participate in shared decision-making during web-based hospice care plan meetings. The overall hypothesis behind the study was that family caregivers of hospice patients with cancer would experience lower anxiety and depression as a result of participating in an online Facebook support group and shared decision-making with hospice staff in a web-based care plan meeting. METHODS: This is a cluster cross-over randomised three-arm clinical trial where one group participated in both the Facebook group and the care plan team meeting. A second group participated only in the Facebook group and the third group was a control group and received usual hospice care. RESULTS: There were 489 family caregivers who participated in the trial. There were no statistically significant differences between the ACCESS intervention group and the Facebook only or the control group on any outcome. The participants in the Facebook only group, however, experienced a statistically significant decrease in depression compared with the enhanced usual care group. CONCLUSIONS: While the ACCESS intervention group did not experience significant improvement in outcomes, caregivers assigned to the Facebook only group showed significant improvement in depression scores from baseline as compared with the enhanced usual care control group. Further research is needed to understand the mechanisms of action leading to reduced depression.

The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19.

CONTEXT: Many hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic. OBJECTIVES: Researchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020. METHODS: Researchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis. RESULTS: Hospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective. CONCLUSION: Inclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.