Family caregivers’ perspectives on communication with cancer care providers

Abstract

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers’ perspectives on communication with oncology care providers.

Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N?=?63).

Participants: Participants were family caregivers of adult patients with cancer. Most were patients’ spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment.

Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers’ experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers.

Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals’ experiences beyond their prescribed roles of “cancer patient” and “caregiver.”

Implications for Psychosocial Oncology Practice: Psychosocial oncology providers’ strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers’ potentially different communication preferences.     

Providers’ Perspectives of Survivorship Care for Young Adult Survivors of Childhood Cancer

We examined healthcare providers’ perceptions of the goals of survivorship care and survivor programs, systems-level barriers and individual patient-level barriers to engaging patients in survivorship care, and potential resources for increasing engagement. In 2012, we recruited 21 healthcare providers of young adult survivors of childhood cancers from a children’s hospital and a cancer center in the Southeastern USA to complete telephone-based semi-structured interviews. The sample was 45.95 years old (SD?=?7.57) on average, 52.4 % female, and 81.0 % MDs. The major goals of survivorship programs identified were medical care management (e.g., addressing late and long-term effects, providing survivorship care plans (SCPs), assisting in transition of care) and holistic care including addressing psychosocial issues and promoting healthy lifestyles. Systems-level barriers to engagement in survivorship care included limited resources (e.g., time), role confusion (e.g., within cancer centers, from treatment team to survivorship care, role of primary care providers), communication challenges within the medical system (e.g., limited tracking of patients, lack of understanding of the role of survivorship clinic), communication challenges with patients (e.g., setting expectations regarding transition to survivorship care), and lack of insurance coverage. Perceived patient-level factors included psychological barriers (e.g., fear, avoidance), resistance to survivorship care, and physical barriers (e.g., distance from survivorship clinics). Resources to address these barriers included increased access to information, technology-based resources, and ensuring valuable services. There are several systems-level and patient-level barriers to survivorship care, thus requiring multilevel interventions to promote engagement in care among young adult survivors of childhood cancer.     

Shared mental models of cancer survivorship care

Quality cancer survivorship care relies on care continuity within the healthcare team. The purpose of this study was to explore the perspectives of healthcare team members regarding cancer survivorship care using the framework of shared mental models. Semi‐structured interviews of cancer survivors, primary support individuals, oncology providers, primary care providers and registered nurses were completed. Data were extrapolated to seven primary themes with associated secondary themes. Primary themes included survivor definition and identity, care setting, team member roles, care gaps, survivor needs, barriers to care and facilitators of care. Through these themes, participants emphasised the individuality of the survivorship experience, acknowledged care gaps and described ongoing needs of cancer survivors. Information provision and communication were noted as care facilitators. Through clarification of team member roles, healthcare providers will be equipped to promote cancer survivor transition by focusing on care continuity, communication and collaboration.     

Priorities for Rural Lymphoma Survivors: A Qualitative Study

BackgroundWe gathered rural patient perspectives on lymphoma care and unmet needs throughout the treatment course to better understand their attitudes toward treatment and their barriers to participating in clinical research studies.Patients and MethodsWe conducted 12 individual semi-structured telephone interviews in the spring of 2018 with lymphoma survivors from rural counties in Georgia. Patients were identified by a residential address in counties classified as rural according to the Rural-Urban Commuting Areas codes. Participants were recruited from regional patient education conferences and from current research participants at a university research hospital in Georgia. The interviews were recorded and transcribed verbatim. Thematic analysis and MAXQDA, version 18.0.8, were used to facilitate a constant comparative coding process during theme development.ResultsThe greatest barrier to care was the travel distance. The participants described difficulty navigating between local clinics and larger cancer centers. The lack of communication between the local and specialized clinics complicated the process, and participants had difficulty contacting or seeking advice from the team at the larger cancer centers. Seeking treatment from specialized clinics farther away introduced additional barriers. Most participants agreed that the use of technology was important for improved communication. Participants described lymphoma etiology, subtype-specific studies, alternative therapies, and quality of life as key research priorities.ConclusionThese findings suggest that targeted research and interventions are necessary to address the specific needs of rural patients with and survivors of lymphoma. To address the disparity in health outcomes within rural populations, healthcare professionals and investigators can use these data to engage rural patients in treatment decision-making and research planning.     

The benefits and challenges of using computer-assisted symptom assessments in oncology clinics: results of a qualitative assessment

Developed for clinical use in oncology settings, the Patient Assessment, Care & Education (PACE) System(tm) is a computer technology tool designed to address the under-identification and treatment of chemotherapy-related symptoms. This system includes general core questions together with the Patient Care Monitor(tm) (PCM), a validated questionnaire that assesses patient-reported problems, six symptom burden indices, and one global quality of life index. The system automatically scores the PCM and generates a written report. The objective of this study was to assess the manner in which clinicians use this system and identify the benefits and challenges that oncology clinics may face when adopting this system. The study was part of a larger evaluation of the system that included standardized surveys and chart review. Sixteen providers (physicians, nurses, and physician assistants) at 13 community oncology clinics participated in a 30-minute interview. Responses were coded according to common phrases or concepts. Clinicians indicated that they use the system mainly for symptom assessment or review of systems. The most common benefits identified included the improved ability to identify under-reported symptoms, enhanced communication with patients; increased efficiency; and its ability to highlight patients' most bothersome symptoms. Challenges included patient burden from the frequent need to answer the questionnaires, issues with the wording and formatting of the screening questionnaire, and technical difficulties. In sum, these interviews suggest that electronic symptom assessments offer potential advantages in terms improving the integration of routine assessment of patients' symptoms and health-related quality of life into the daily flow of an oncology clinic. The approach should receive additional research and development attention.     

Developing and Implementing an Advanced Communication Training Program in Oncology at a Comprehensive Cancer Center

Cancer patients report significant levels of unmet needs in the realm of communication. Communication skills training programs have been shown to improve clinical communication. However, advanced communication skills training programs in oncology have lacked institutional integration, and thus have not attended to institutional norms and cultures that may counteract explicit communication skills training. We developed and implemented an advanced communication skills training program made up of nine teaching modules for faculty, fellows, and residents. Training included didactic and experiential small group work. Self-efficacy and behavior change were assessed for individual participants. Since 2006, 515 clinicians have participated in this training program. Participants have shown significant gains in self-efficacy regarding communicating with patients in various contexts. Our initial work in this area demonstrates the implementation of such a program at a major cancer center to be feasible, to be acceptable, and to have a significant impact on participants' self-efficacy.     

The Psychosocial Oncology Learning Assessment: A Province-Wide Survey of Cancer Care Providers’ Learning Needs

A psychosocial oncology learning needs assessment was developed and offered online to cancer care providers in a variety of settings across all health regions in British Columbia. The purpose was to better understand the psychosocial learning needs of cancer care providers and to use this knowledge to shape continuing education priorities. Respondents' preferred learning formats, access to technology and barriers to accessing psychosocial learning opportunities were also assessed. Cancer care providers including radiation therapists, social workers, dieticians, pharmacists, physicians and nurses in both community and agency settings were surveyed. Two hundred and sixty-seven people completed the survey. Key learning needs identified included cultural aspects of care, symptom management, treating the anxious patient, self-care for the professional, care of elderly patients, basic cancer-related medical issues surrounding care and ethics. Community respondents indicated more needs than agency respondents. On-site training was the most preferred learning format, and time constraints were the biggest barrier to accessing learning opportunities. Participants had access to technology. Next steps include conducting key informant and focus group interviews to determine if interest in a learning need is the same as a relevant knowledge and practice gap. This research suggests that cancer care providers are interested in learning more about the psychosocial issues related to cancer care.     

Evaluation of a pilot communication skills training intervention for minority cancer patients

The aim of this study was to pilot test in a minority cancer patient population a communication workshop to improve doctor-patient communication skills. Thirty-two patients participated. Eighteen evaluated a face-to-face workshop, while 14 completed surveys only. Participants in the workshop group completed the Patient Report of Communication Behavior (PRCB) before and after the workshop and a course evaluation. Participants did not differ on baseline PRCB scores. Posttest scores were significantly higher than pretest scores (p < 0.01). All participants agreed or strongly agreed that they would use the communication skills; 93% agreed or strongly agreed that the skills would improve their health care.     

Interviewing patients using interpreters in an oncology setting: initial evaluation of a communication skills module

ObjectivesTo develop a communication skills training (CST) module for health care professionals, particularly in the area of oncology, on how to conduct interviews using interpreters and to evaluate the module in terms of participant’s self-efficacy and satisfaction.MethodsForty-seven multi-specialty health care providers from the New York Metropolitan Area attended a communication skills module at a Comprehensive Cancer Care Center about how to conduct clinical interviews utilizing interpreters. The development of this module was on the basis of current literature and followed the Comskil model previously utilized for other doctor–patient CSTs. Participants were given pre- and post-surveys to evaluate their own confidence as well as the helpfulness of the module.ResultsOn the basis of a retrospective pre–post measure, participants reported an increase in their confidence about interviewing patients via translators. In addition, at least 80% of participants reported their satisfaction with the various components of the module by either agreeing or strongly agreeing with the different statements.ConclusionsWe have developed a module that trains clinicians in effective collaboration with professional medical interpreters and shown its ability to increase the confidence of clinician's to work with limited English proficiency patients. Our approach intends to minimize not only the language barrier but also the cultural barriers that could potentially interfere with patients’ care.Practice implicationsThis work has important practice implications in the oncology setting, where cultural sensitivity is paramount and empathic exchange with the patient optimizes their sense of being well supported by their health care team. We believe that this model is generalizable to many other medical settings where use needs to be made of a professional interpreter.     

Evaluation of a Pilot Communication Skills Training Intervention for Minority Cancer Patients

The aim of this study was to pilot test in a minority cancer patient population a communication workshop to improve doctor–patient communication skills. Thirty-two patients participated. Eighteen evaluated a face-to-face workshop, while 14 completed surveys only. Participants in the workshop group completed the Patient Report of Communication Behavior (PRCB) before and after the workshop and a course evaluation. Participants did not differ on baseline PRCB scores. Posttest scores were significantly higher than pretest scores (p < 0.01). All participants agreed or strongly agreed that they would use the communication skills; 93% agreed or strongly agreed that the skills would improve their health care.     

Reducing symptom limitations: a cognitive behavioral intervention randomized trial

Until now, little research has been conducted examining the reactive dimension, or the degree to which a symptom limits an individual's life, in a multiplicity of symptoms. This research examines how problem-solving therapy organizes an intervention to decrease symptom limitations. The purpose was threefold: to determine if a cognitive behavioral intervention decreases the impact of symptom limitations among individuals newly diagnosed with cancer, who are receiving chemotherapy; to determine, after adjusting for covariates, how symptom limitations change over time; and to describe which symptoms are most limiting. This randomized control trial was conducted in two comprehensive and four community cancer centers. Two hundred thirty-seven individuals, aged 31-87, newly diagnosed with solid tumor cancers, participated. The experimental group (118 individuals) received a 10-contact, 18-week cognitive behavioral intervention focused on cancer- and chemotherapy-related symptoms. The control group (119 individuals) received conventional care. Interviews occurred at baseline, 10, 20, and 32 weeks. Data analysis used a two-level hierarchical linear model. Participants receiving the cognitive behavioral intervention had lower scores of symptom limitation than did participants in the control group. At the onset of the study, younger patients reported more symptom limitations than their older counterparts; however, this was reversed by the end of the study. The cognitive behavioral intervention was key to decreasing symptom limitations. Findings also suggest that nursing interventions may be particularly helpful to younger individuals in managing cancer-related symptom limitations.     

Psychological distress of cancer and clinical trial participation: a review of the literature

The House of Commons Select Committee on Science and Technology 2000 state that currently less than 5% of adult patients with solid tumours are entered into clinical trials. They recommend that increasing the number of adult cancer patients entering clinical trials must become a high priority. Health-care providers need to prepare themselves for this proposed increase in trial participants by assessing the current status of care and implementing changes within the current infrastructure to provide optimal holistic care. Cancer can change a patient's life either for better or for worse. At one extreme, having cancer leads to enhanced appreciation of life and closer bonds with others. However, at the other extreme, cancer combined with its treatment is viewed as an event that evokes distress and emotional anguish taxing the individual's ability to cope. In the last 25 years, owing to the advent of clinical trials, progress has been made in cancer treatment. Clinical trials may be hailed as the saviour to many therapeutic dilemmas. Treatments are now available which can offer patients hope of cure. Nevertheless, many participants may fear, for the purpose of research, that they may be assigned to less than optimal therapy or that their care will be carried out in a sterile scientific atmosphere devoid of humane and personal consideration. These and other reasons may cause unacceptable personal distress that overrides the potential therapeutic gain. Cancer diagnosis coupled with the ramifications of clinical trial involvement can have significant psychological implications. They may trigger the onset of a mood disorder or exacerbate a present symptom. This article will identify mood disorders in the cancer population, focus on the participants' needs in the clinical trial arena and investigate the influence trial participation has on psychological status.     

Cancer patient perspectives regarding preparedness for end-of-life care: A qualitative study

Purpose: The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of “preparedness,” however, there is insufficient information about what cancer patients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development. Design: This qualitative study examined patient perspectives regarding preparedness for EOL care. Participants and methods: In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data. Findings: Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning). Conclusions: Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.     

Preferences for Genetic Testing to Identify Hereditary Colorectal Cancer: Perspectives of High-Risk Patients,Community Members,and Clinicians

The aim of this study was to establish key characteristics that patients, consumers, and health professionals value regarding genetic testing (GT) and personalized medicine using the example of GT for hereditary Lynch syndrome. We conducted a series of focus groups with individuals recruited from a clinic that follows those at high risk for hereditary cancer, individuals recruited from the community, physicians, and genetic counselors. Participants were presented with clinical scenarios about Lynch syndrome testing and asked to identify characteristics that they perceived as important in making decisions about GT. Forty-two participants (19 community members, 8 high-risk and cancer patients, 3 genetic counselors, and 8 physicians) participated. Among community members and patients, the most frequently discussed considerations were the personal impact of GT and family impact, respectively. Among physicians, the most frequently discussed topic was the characteristics of genomic services (e.g., test invasiveness); among genetic counselors, the most frequently discussed topic was evidence and recommendations. A variety of test characteristics were important in decision making about GT. High-risk patients, community members, and health care providers had different priorities. Health care professionals should be aware of differences between their own considerations about GT and those that are important to patients.     

Is ignorance bliss,or is knowledge power? When cancer healthcare professionals become cancer patients

Cancer healthcare professionals who are diagnosed with cancer enter the patient journey with considerable illness‐specific and healthcare expertise, which may influence the nature of their experience. Insights gained from having personal cancer experience may also lead to changes in professionals' subsequent clinical practice. This study explored cancer professional‐patients' experiences of their own cancer diagnosis, changes in practice, and recommendations for cancer care improvements. Participants were current or former cancer healthcare professionals who had ever received a cancer diagnosis. Semi‐structured interviews were conducted with 26 participants. Thematic analysis with an inductive approach was used for data analysis. Cancer professional‐patients faced unique needs, benefits and disadvantages due to their professional background, which both aided and marred their personal cancer experience. Individuals reported subjective practical and emotional‐related improvements in their clinical practice, although adverse emotional consequences upon returning to work were also prevalent. Care recommendations highlighted the importance of communication skills training for professionals, integrating psychological support, and providing patient‐centred care. In order to provide optimal care for cancer professional‐patients, providers must acknowledge their distinct challenges. Findings may help to foster improvements in cancer care practices through developing guidelines for treating cancer professional‐patients, and as part of narrative‐based medicine.     

Development of a Psychoeducational Intervention for Men with Prostate Cancer

This study aimed to develop and implement a nurse-led psychoeducational group program for men receiving radiotherapy for prostate cancer. These groups are part of a larger multidisciplinary care intervention, which is designed to enhance patient involvement in care. The manual for the groups was developed using a literature review and expert opinion from a multidisciplinary team consisting of radiation oncologists, urology nurses, behavioral scientists, psychologists, radiation therapists, and consumers. The group was pilot tested with 10 participants and further refined based on patient and facilitator feedback. The final program consisted of four, 1-hour, psychoeducational group sessions, with modules covering anatomy, treatment side effects, physical/lifestyle/ emotional impacts of prostate cancer, sexuality and communication, and survivorship delivered at pretreatment, midtreatment, end of treatment, and posttreatment. The modular design of this intervention is innovative in that men in the group can collectively nominate which modules they wish to focus on. Feedback from patients and facilitators was positive with minimal changes made to the manual, apart from session 4 that required expansion to permit group members to have greater choice over the content. Participants endorsed the psychoeducational groups as being useful, an appropriate length, and addressing their issues of concern. Further testing of the psychoeducational groups is currently being undertaken as part of a larger randomized controlled trial of the multidisciplinary care intervention.