Purpose/Objectives To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. Research Approach Qualitative. Setting A large comprehensive cancer center in the midwestern region of the United States. Participants 14 distance caregivers of parents with advanced cancer. Methodologic Approach Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. Findings Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. Conclusions Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. Interpretation Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.
With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.
Multiple, complex factors influence end-of-life (EOL) decisions for all persons. In the African American population, these factors include history of disparities and discrimination in health care, which may affect the individual and the family, family system beliefs, values, and practices, and health care system issues. Family dynamics have an especially important role in treatment decisions for loved ones with advanced disease. A family systems framework can guide the clinicians in appreciating care needs and preferences at EOL. Understanding why so many African Americans choose aggressive and often burdensome care, even at the expense of suffering, is important for communication about options at the EOL and the delivery of quality care at the EOL.
Objective To assess the coping strategies used by family decision makers of adult critical care patients during and after the critical care experience and the relationship of coping strategies to posttraumatic stress symptoms experienced 60 days after hospitalization. Design A single-group descriptive longitudinal correlational study. Setting Medical, surgical, and neurological ICUs in a large tertiary care university hospital. Patients Consecutive family decision makers of adult critical care patients from August 2012 to November 2013. Study inclusion occurred after the patient's fifth day in the ICU. Interventions None. Measurements and Main Results Family decision makers of incapacitated adult ICU patients completed the Brief COPE instrument assessing coping strategy use 5 days after ICU admission and 30 days after hospital discharge or death of the patient and completed the Impact of Event Scale-Revised assessing post-traumatic stress symptoms 60 days after hospital discharge. Seventy-seven family decision makers of the eligible 176 completed all data collection time points of this study. The use of problem-focused (p = 0.01) and emotion-focused (p < 0.01) coping decreased over time while avoidant coping (p = 0.20) use remained stable. Coping strategies 30 days after hospitalization (R2 = 0.50, p < 0.001) were better predictors of later posttraumatic stress symptoms than coping strategies 5 days after ICU admission (R2 = 0.30, p = 0.001) controlling for patient and decision-maker characteristics. The role of decision maker for a parent and patient death were the only noncoping predictors of post-traumatic stress symptoms. Avoidant coping use 30 days after hospitalization mediated the relationship between patient death and later posttraumatic stress symptom severity. Conclusions Coping strategy use is a significant predictor of posttraumatic stress symptom severity 60 days after hospitalization in family decision makers of ICU patients.
Objective To discuss the new phenomenon of distance caregiving, with an emphasis on the experience of adult children providing distance caregiving to a parent with cancer. Data Sources Literature Review Conclusions Although the research is limited, it forms the foundation for beginning to describe the phenomenon and the associated psychosocial burdens that distance caregivers are struggling with. Implications for Nursing Practice With the growing population of distance caregivers, it is important for nurses to address these burdens. Interventions for clinical practice are recommended.
PURPOSE: Approximately 20% of caregivers (CGs) live > 1 hour away from the patient and are considered distance caregivers (DCGs) who often report higher distress and anxiety than local CGs. The purpose of this study was to test the effectiveness of an intervention aimed at reducing anxiety and distress in DCGs of patients with cancer. METHODS: This randomized controlled trial enrolled DCGs of patients with all cancer types who were being seen monthly by oncologists in outpatient clinics. There were three arms of the intervention delivered over a 4-month period: arm 1 (a) received 4 monthly videoconference-tailored coaching sessions with an advanced practice nurse or social worker focused on information and support, (b) participated in patient’s appointments with the oncologist via videoconference over the 4-month study period, and (c) had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other two components, and arm 3 received access to the DCG website only. RESULTS: There were 302 DCGs who provided pre- and postintervention data. There were significant anxiety by group ( P = .028 and r = 0.16) and distress by group interactions ( P = .014 and r = 0.17). Arm 1 had the greatest percentage of DCGs who demonstrated improvement in anxiety (18.6%) and distress (25.2%). CONCLUSION: Coaching and use of videoconference technology (to join the DCG into the patient-oncologist office visit) were effective in reducing both anxiety and distress for DCGs. These components could be considered for local CGs who—with COVID-19—are unable to accompany the patient to oncologist visits.
Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.
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