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Purpose Financial strain and stressful life events can constrain open communication within families. A cancer diagnosis can bring heightened emotional stress and financial strain for most cancer patients and their families. We evaluated how level of comfort and willingness to discuss important but sensitive economic topics affected longitudinal assessments of family relationships, exploring both within-person and between partner effects over 2 years after a cancer diagnosis. Methods A case series of hematological cancer patient-caregiver dyads ( n  = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multi-level models were developed to examine the associations between comfort discussing economic aspects of cancer care and family functioning. Results Broadly, caregivers and patients who were comfortable discussing economic topics reported higher family cohesion and lower family conflict. Dyads’ assessments of family functioning were influenced both by their own and their partners level of communication comfort. Overtime, caregiver but not patients perceived a significant decrease in family cohesion. Conclusions Efforts to address financial toxicity in cancer care should include examination of how patients and families communicate as unaddressed difficulties can have detrimental effects on family functioning in the long term. Future studies should also examine whether the prominence of specific economic topics, such as employment status, varies depending on where the patient is in their cancer journey. Implications for Cancer Survivors. In this sample, cancer patients did not perceive the decline in family cohesion that was reported by their family caregiver. This is an important finding for future work that aims to identify the timing and nature to best intervene with caregiver supports to mitigate caregiver burden that may negatively impact long-term patient care and QoL.

Background As cultural contexts have gained increasing relevance in medical decision-making, the current mainstream definition of autonomy is insufficient. A viable alternative framework, relational autonomy posits that agents’ actions are influenced by and embedded in society and culture rather than occurring in isolation. To test the concept’s applicability, we examine whether Asian Americans in the study’s sample operationalize relational autonomy as a decisional approach in hypothetical scenarios about organ donation, a practice for which there is considerably lower enthusiasm compared to other racial groups in the US. Methods A national sample of Asian American adults were recruited from a Qualtrics research panel. Participants completed a Think-Aloud interview containing scenarios in which they decide whether or not to: (1) become a registered donor at the motor vehicle department; (2) authorize organ donation for a close relative who unexpectedly died. The interview first elicited candid reactions to the scenarios, followed by probing participants’ rationale of their initial responses. Participants’ final decision to each scenario (whether or not to register; whether or not consent to surrogate authorization), as well as participants’ decisional approaches (individualistic vs. relational) were coded using the constant comparison method. Results The sample ( n  = 40) mirrored the largest proportions of Asian Americans in the US; the plurality identified as Chinese (35%), Filipino (27.5%) and Indian (25%). In response to the organ donor registration prompt, a majority of respondents (57.5%) expressed they would employ the mainstream decisional approach of individualistic autonomy, and 42.5% would make the decision with a relational approach. In contrast, when responding to the surrogate authorization prompt, the majority (77.5%) described a relational approach when making the decision, to preserve familial harmony and honor their cultural heritage. Conclusions Use of individualistic and relational autonomy frameworks are situational for some individuals. Participants acknowledged the impact of personal, cultural, and societal elements on their decisional approach. The concept of relational autonomy has utility through its versatility in complex decision-making events and by accounting for multiple stakeholders without privileging the autonomy of a single decision-maker over others. Clinical trial number Not applicable.

Background Transportation has been identified as a specific source of burden for cancer caregivers. This study examined cancer caregivers' subjective experiences and objectives costs associated with transportation over a 6‐month period of providing end‐of‐life care to a family member or friend. Methods This was a multi‐site longitudinal, prospective cohort study that followed 223 caregiver–patient dyads. Data were collected using biweekly, semi‐structured interviews for up to 6 months and collection of all caregiving related receipts. Interviews were coded and analyzed using a comparative, iterative analysis and actual out of pockets costs were described using descriptive statistics. Results Over the 6‐month study period most caregivers (n = 143; 74%) discussed transportation at one or more timepoints. Average biweekly transportations costs to caregivers were $43.6. Caregivers described (n = 56; 39%) multiple direct and indirect costs of transportation, and 58% (n = 84) discussed the need for transportations services or assistance at the institutional level. Conclusions Caregivers described the multifaceted costs of transportation they experienced which are in line with previous work. Alongside descriptions of direct costs, caregivers described key opportunity costs, such as personal and work time forgone to transporting patients. Caregivers also made suggestions for institutional and/or civic based solutions to facilitate reliable modes of transportation, rather than individual‐level intervention.

Background Approaching families of dying or newly deceased patients to donate organs requires specialized knowledge and a mastery of relational communication. As the transplantation field has progressed, Donation Professionals (DPs) are also leading conversations with family decision makers (FDMs) about the donation of uncommon anatomical gifts, such as face, hands, genitalia, referred to as Vascularized Composite Allotransplants (VCA) without much training or experience. To address the need for training, we adapted and beta tested an evidenced-based communication training program for donation discussions to VCA requests. The overarching goal of C ommunicating E ffectively a bout D onation for V ascularized C omposite A llotransplantation (CEaD-VCA) is to increase the number of VCA authorizations and to improve the socioemotional outcomes of FDMs. Methods We developed CEaD-VCA, an online, on-demand training program based on the previously tested, evidenced-based communication skills training program designed to train DPs to have conversations about solid organ donation. The training was modified utilizing data from a national telephone survey with DPs and results of 6 focus groups conducted with members of the general public. The survey and focus groups assessed knowledge, attitudes, and barriers to VCA donation. The training was shaped by a partnership with a leading industry partner, the Gift of Life Institute.™ Results Using the results as a guide, the existing CEaD training program, consisting of interactive eLearning modules, was adapted to include technical information about VCA, foundational communication skills, and two interactive example VCA donation request scenarios to facilitate active learning. Forty-two DPs from two partner Organ Procurement Organizations (OPOs) participated in the beta test of CEaD-VCA. Pre- and post-test surveys assessed the impact of the training. Conclusions The training was scored highly by DPs in effectiveness and ease of use. This project created a standardized, accessible, and comprehensive training for DPs to communicate about VCA donation. CEaD-VCA is an example of how to develop a communication skills training for difficult conversations utilizing input from stakeholders, guided by communication theory. It also demonstrates how gaps in communication skills during medical education can be filled utilizing advanced online Learning Management Systems. The training specifically addresses new CMS rules concerning OPO performance metrics.

There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants. Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55). Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them. FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.

Background Clinicians are encouraged to practice evidence-based medicine (EBM) as well as patient-centered medicine. At times, these paradigms seem to be mutually exclusive and difficult to reconcile. It can become even more challenging when trying to include the preferences of the patient’s family members. This paper discusses the basis for this quandary, providing examples of the real-world impact it has on diagnosis-seeking and treatment decision-making behaviors and how it might inform implementation of EBM practices. Analysis To further explore the role of friends and family in health-care decision making and to understand how patients and families introduce other considerations that may or may not be congruent with a strictly EBM approach, data from two research studies that examined healthcare–seeking behaviors are presented. Both studies explore how family and friends not only can influence health-care decisions but also may be a source of conflict for the patient and/or clinician. Conclusions Illness is a biological and social process. Clinicians who engage in EBM need to acknowledge the social and cultural factors that affect the health-care encounter, understand the important role of those factors in health-care decision making, and expand the paradigm of EBM to incorporate sociocultural influences more explicitly. Moreover, recognition of the influences family members and other caregivers have within the clinical encounter—by offering opinions and participating in treatment-related decision making—is needed and could lead to more efficient and effective health care.

Abstract Introduction The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. Methods A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. Results Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). Conclusions Cancer caregiving is dynamic; CGs must adjust to the progression of the patient’s disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services. This study aimed to comprehensively understand the burden experienced by caregivers providing home-based, end-of-life care to patients with cancer.

Background: This mixed-methods study examined the general public’s knowledge and attitudes about vascularized composite allografts. The availability of these anatomical gifts to treat individuals with severe disfiguring injuries relies largely on decisions made by family members. If vascularized composite allograft transplantation is to become more readily available, the knowledge and beliefs of the general public must be explored to ensure vascularized composite allograft donation approaches adequately support the donation decision-making process. Methods: We conducted six focus groups with 53 members of the general public, which were audio-recorded for accuracy and transcribed. Before each session, participants completed a brief survey assessing donation-related knowledge, attitudes, and beliefs. Analysis of qualitative data entailed the constant comparison method in the development and application of a schema for thematic coding. Descriptive statistics and Spearman’s rank coefficient were used in the analysis of the quantitative data. Results: Respondents were most knowledgeable about solid organ donation and least knowledgeable about vascularized composite allograft donation. Six major themes emerged: (1) strong initial reactions toward vascularized composite allografts, (2) limited knowledge of and reservations about vascularized composite allografts, (3) risk versus reward in receiving a vascularized composite allograft, (4) information needed to authorize vascularized composite allograft donation, (5) attitudes toward donation, and (6) mistrust of the organ donation system. Conclusion: The general public has low levels of knowledge and high levels of hesitation about vascularized composite allograft donation and transplantation. Education campaigns to familiarize the general public with vascularized composite allografts and specialized training for donation professionals to support informed family decision-making about vascularized composite allograft donation may address these issues.

Purpose Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver’s physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver’s absence on the primary caregiver’s well-being is understudied. Methods Terminal cancer patient-caregiver dyads ( n  = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Results Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient’s wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Conclusions Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

Background Informal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers, and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and well-being over time. Methods A case series of hematological cancer patient-caregiver dyads ( n  = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multilevel models were developed to examine the associations between the presence of a secondary caregiver and the primary caregivers’ well-being. Results Most (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health. Conclusions Primary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) over time is needed to ensure that caregivers remain healthy and well supported.