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This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development.
Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer.
Participants (n = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs.
Significance of results
Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges.
Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a validated, reliable coding system used in clinical interactions. The aims of this study were (1) to assess the feasibility of the ECCS in DT sessions and (2) to describe the process of empathic communication during DT sessions.
We conducted a secondary analysis of 25 transcripts of DT sessions with older cancer patients. These DT sessions were collected as part of larger randomized controlled trial. We revised the ECCS and then coded the transcripts using the new ECCS-DT. Two coders achieved inter-rater reliability (κ = 0.84) on 20% of the transcripts and then independently coded the remaining transcripts.
Participants were individuals with cancer between the ages of 55 and 75. We developed the ECCS-DT with four empathic response categories: acknowledgment, reflection, validation, and shared experience. We found that of the 235 idea units, 198 had at least one of the four empathic responses present. Of the total 25 DT sessions, 17 had at least one empathic response present in all idea units.
Significance of results
This feasibility study is an essential first step in our larger program of research to understand how empathic communication may play a role in DT outcomes. We aim to replicate findings in a larger sample and also investigate the linkage empathic communication may have in the DT session to positive patient outcomes. These findings, in turn, may lead to further refinement of training for dignity therapists, development of research into empathy as a mediator of outcomes, and generation of new interventions.
The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.
Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.
Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.
Significance of results
Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.
Cancer patients and their caregivers often turn to the internet for information and support following a cancer diagnosis. Research shows a need for improvement in doctors' communication with patients about internet information. The purpose of this formative assessment was to evaluate oncology trainees' skills in talking about internet information with cancer patients.
Thirty-nine oncology trainees were evaluated in a baseline standardized patient assessment as part of their participation in the Comskil Training Program. As part of the assessment, standardized patients were instructed to raise the topic of internet information they had read. Transcriptions of the video-recorded assessments were coded for patient statements and trainee responses.
Fifty-six percent of trainees used a probe to get more information before addressing the content of the internet search, while 18% addressed it immediately. Eighteen percent of trainees warned the patient about using the internet, and 8% warned about and also encouraged internet use. Thirteen percent of trainees praised the patient for seeking out information on the internet.
Significance of results:
This formative assessment indicated that the majority of trainees addressed the content of the internet search, while a minority addressed the internet as a tool and praised patients' efforts. Research in this area should examine the effectiveness of educational interventions for trainees to improve discussions about internet information.
Most research examining the impact of patients seeking online health information treats internet information homogenously, rather than recognizing that there are multiple types and sources of available information. The present research was conducted to differentiate among sources and types of internet information that patients search for, intend to discuss with their doctors, and recall discussing with their doctors, and to determine how accurate and hopeful patients rate this information.
We surveyed 70 breast cancer patients recruited from the waiting rooms of breast medical oncology and surgery clinics. The main variables in the study were as follows: (1) the sources and types of online information patients have read, intended to discuss, and actually discussed with their doctors, and (2) how accurately and hopefully they rated this information to be.
Patients read information most frequently from the websites of cancer organizations, and most often about side effects. Patients planned to discuss fewer types of information with their doctors than they had read about. They most often intended to discuss information from cancer organization websites or WebMD, and the material was most often about alternative therapies, side effects, and proven or traditional treatments. Some 76.8% of total participants rated the information they had read as very or somewhat accurate, and 61% rated the information they had read as very or somewhat hopeful.
Significance of Results:
Internet information varies widely by source and type. Differentiating among sources and types of information is essential to explore the ways in which online health information impacts patients' experiences.
To develop a communication skills training module for health care professionals about how to conduct a family meeting in palliative care and to evaluate the module in terms of participant self-efficacy and satisfaction.
Forty multispecialty health care professionals from the New York metropolitan area attended a communication skills training module at a Comprehensive Cancer Center about how to conduct a family meeting in oncology. The modular content was based on the Comskil model and current literature in the field.
Based on a retrospective pre–post measure, participants reported a significant increase in self-efficacy about their ability to conduct a family meeting. Furthermore, at least 93% of participants expressed their satisfaction with various aspects of the module by agreeing or strongly agreeing with statements on the course evaluation form.
Significance of results:
Family meetings play a significant role in the palliative care setting, where family support for planning and continuing care is vital to optimize patient care. Although these meetings can be challenging, this communication skills module is effective in increasing the confidence of participants in conducting a family meeting.
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