The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers’ uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers’ experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers’ needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.
Background COVID-19 thrust both patients and clinicians to use telemedicine in place of traditional in-person visits. Prepandemic, limited research had examined clinician-patient communication in telemedicine visits. The shift to telemedicine in oncology, or teleoncology, has placed attention on how the technology can be utilized to provide care for patients with cancer. Objective Our objective was to describe oncology clinicians’ experiences with teleoncology and to uncover its benefits and challenges during the first 10 months of the COVID-19 pandemic. Methods In-depth, semistructured qualitative interviews were conducted with oncology clinicians. Using an inductive, thematic approach, the most prevalent themes were identified. Results In total, 21 interviews with oncology clinicians revealed the following themes: benefits of teleoncology, such as (1) reducing patients’ travel time and expenses, (2) limiting COVID-19 exposure, and (3) enabling clinicians to “see” a patients’ lifestyle and environment, and challenges, such as (1) technological connection difficulties, (2) inability to physically examine patients, and (3) patients’ frustration related to clinicians being late to teleoncology appointments. Conclusions Teleoncology has many benefits and is well suited for specific types of appointments. Challenges could be addressed through improved communication when scheduling appointments to make patients aware about what to expect. Ensuring patients have the proper technology to participate in teleoncology and an understanding about how it functions are necessary.
Background Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. Objective We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. Methods Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). Results Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). Conclusions We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes.
Purpose Patient-centered communication (PCC) in cancer care is helpful to nurture the patient-clinician relationship and respond to patients’ emotions. However, it is unknown how PCC is incorporated into electronic patient-clinician communication. Methods In-depth, semi-structured qualitative interviews with clinicians were conducted to understand how PCC was integrated into asynchronous communication between patients and clinicians; otherwise, known as secure messaging. The constant comparative method was used to develop a codebook and formulate themes. Results Twenty clinicians in medical and radiation oncology participated in audio-recorded interviews. Three main themes addressed how clinicians incorporate PCC within messages: (1) being mindful of the patient-clinician relationship, (2) encouraging participation and partnership, and (3) responding promptly suggests accessibility and approachability. Clinicians recommended that patients could craft more effective messages by being specific, expressing concern, needs, and directness, summarized by the acronym S.E.N.D. Conclusions Clinicians value secure messaging to connect with patients and demonstrate their accessibility. They acknowledge that secure messaging can influence the patient-clinician relationship and make efforts to include considerate and supportive language. As secure messaging is increasingly relied upon for patient-clinician communication, patients’ message quality must improve to assist clinicians in being able to provide prompt responses inclusive of PCC.
This entry provides a brief overview of burnout within the context of caregiving, background on the current landscape of caregiving and factors that may contribute to burnout, as well as important points related to signs of stress and prevention. As rates of prevalent illnesses that require caregiving continue to increase, so will the need for informal caregivers. This role is often fulfilled by family members or friends, and caregiving responsibilities may be emotionally, physically, and/or financially demanding. Factors associated with such stressors can contribute to burnout, which has been conceptualized as consisting of three dimensions including exhaustion, which may be a significant factor in the lives of caregivers. Developing a better understanding of the needs of caregivers can have a positive impact on this population and those they care for, particularly through improvements in communication. This entry concludes with discussion of future directions and areas for research to aid in accomplishing these goals.
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