Search

Based on audio recordings of consultations in three U.S. paediatric multidisciplinary Disorders of Sex Development-Intersex clinics, we examine the process of gender assignment of children with "atypical" genitalia. Rather than fully determined by the presence of biological sex traits, the gender assignment discussion hinges on how clinician and parent collaboratively imagine different aspects of what constitutes being a gendered person. They orient towards the potential for sexual intimacy, fertility, gender dysphoria, stigma, and gonadal cancer risk. While these futures remain inherently uncertain, clinicians and parents plan to mobilise gender socialisation and medical interventions to render their choice of gender a self-fulfilling prophecy. Gender destinies capture that the child always had a specific, innate gender awaiting discovery, and presumes a project for medical and social monitoring, intervention, correction, and optimisation., (© 2019 Foundation for the Sociology of Health & Illness.)

Genital surgery in children with ambiguous or atypical genitalia has been marred by controversies about the appropriateness and timing of surgery, generating clinical uncertainty about decision making. Since 2006, medical experts and patient advocates have argued for putting the child's needs central as patient-centered care. Based on audio recordings of 31 parent-clinician interactions in three clinics of disorders of sex development, we analyze how parents and clinicians decide on genital surgery. We find that clinicians and parents aim for parent-centered rather than infant-centered care. Parents receive ambivalent messages about surgery: while clinicians express caution, they also present the surgery as beneficial. We examine how parents and clinicians reach agreement about surgery-differentiating parents who push strongly for surgery from parents who do not express any preconceived preferences about surgery and parents who resist surgery. We conclude that clinicians use clinical uncertainty about surgery strategically to direct parents toward perceived clinically appropriate decisions.

Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics. We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions., (Copyright 2018 The Journal of Clinical Ethics. All rights reserved.)

Purpose: 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., Methods: Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55)., Results: 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., Conclusion: 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.Genet Med 18 1, 82-88.

Background and Objectives: Although existing studies suggest that factors affecting families' decisions regarding pediatric organ donation mirror those for adult patients, health professionals working in this area maintain that pediatric and adult decision-makers differ in significant ways. This study compared the request process, experiences, and authorization decisions between family decision-makers (FDMs) of adult and pediatric donors and nondonors., Methods: Perceptions of the donation request were collected via telephone interviews with 1601 FDMs approached by staff from 9 US organ procurement organizations (OPOs). Authorization regarding donation (ie, authorized/refused) was obtained from FDM reports and verified by using OPO records. Tests of association were used to estimate differences between FDMs of adult and pediatric patients. A logistic regression analysis was conducted to identify variables predicting FDM authorization., Results: FDMs of children were significantly more likely to authorize donation than were FDMs of adults (89.7% vs 83.2%; χ(2) = 6.2, P = .01). Differences were found between pediatric and adult families' initial feelings toward donation, donation-related topics discussed, communication behaviors and techniques used, perceptions of the request, and receipt and preference of grief information. The likelihood of FDM authorization increased with the number of topics discussed and communication skills employed during requests. Authorization was not predicted by patient age (ie, adult versus pediatric)., Conclusions: FDMs of children are willing to donate and experience no more psychological distress from the request for donation than do FDMs of adults. Communication emerged as a critical factor of family authorization, reinforcing its importance in requests for donation., (Copyright © 2015 by the American Academy of Pediatrics.)

Objective: To examine whether interpersonal behavior and provision of key information by tissue requesters (TRs) during phone requests for tissue donation with initially undecided next-of-kin (NOK) predict consent/refusal to donate., Methods: The sample consisted of 102 TR-NOK dyads in which NOK reported that they were initially undecided about their intentions to donate their loved ones' tissue. Audiorecordings of requests, gathered from a national sample of tissue banks, were coded to assess for interpersonal behavior of each interactant. The effects of TR and NOK interpersonal behavior as well as information provision by the TR on consent/refusal were examined., Results: Expressions of disapproval by the TR strongly predicted NOK donation decision. Predictors of consent included fewer questions asked and more supportive statements made by the TR, as well as reassurance from the TR that donation would not lead to disfigurement or affect the appearance of the body., Conclusion: Aspects of the communication process between TR and NOK during requests for tissue donation significantly predict consent to donate among initially undecided NOK., Practice Implications: TR trainings aimed at improving interpersonal skills and provision of key information could potentially increase tissue donation consent rates., (Published by Elsevier Ireland Ltd.)

Successful transplant medicine hinges on consent to deceased organ donation. Yet rates of consent remain suboptimal. To increase the availability of transplantable organs, several policy strategies along with a rich body of evidence aimed at identifying best practices for obtaining consent have accumulated. This review describes past and current policies and practices, presents evidence illustrating the impact of these policies and practices on consent, and summarizes future directions and recommendations for the field. Key findings include evidence that although past policies such as required request have been unsuccessful, the recent policy, first-person authorization, shows promise. Additionally, practices such as decoupling and detailed discussions of brain death are unwarranted. On the other hand, the Organ Donation Breakthrough Collaboration was successful. We also underscore the impact of alternative procedures such as donation after cardiac death. Last, effective communication that is delivered by trained, caring requesters at the appropriate time, in a supportive environment, and allows sufficient time for families to make an informed decision, optimizes the request process. Organ procurement organizations' adoption of such request practices, implementation of evidence-based policies regarding donation after cardiac death, and further investigations of the medical basis for dual brain death examinations are recommended.

Background: First Person Authorization (i.e., donor designation) legislation makes indicating one's intent to be a posthumous organ donor legally binding, much like a living will or advance directive. Such legislation is the most recent in a long history of organ donation policies in the United States and has received little attention in the literature., Methods: This retrospective cohort study recruited nine US organ procurement organizations (OPOs) and their staff who make requests for organ donation as well as family decision makers approached by OPO staff about organ donation. Telephone interviews (N = 1,087) with family decision makers assessed the attitudes, perceptions, and behaviors regarding the request for organ donation of families of designated donors as compared with those of patients who did not formally designate themselves as donors., Results: Almost two thirds (65.7%) of the families of registered donors were aware of the decedent's decision to register as a posthumous donor. Family decision makers who authorized donation and those of designated donors exhibited greater knowledge of organ donation and more positive attitudes than decision makers who refused to donate. Families of designated donors had more favorable perceptions of the request for organ donation and were more satisfied with both the time spent discussing donation and the request process; fewer donor designation families were surprised at the request for donation., Conclusion: The enactment of First Person Authorization legislation increases the likelihood of familial authorization and satisfaction with the final donation outcome. As compared with other families approached about the option of organ donation, families of designated donors report having a more positive experience with the organ donation request process overall and greater comfort and satisfaction with the donation decision., Level of Evidence: Epidemiologic study, level II.

Objective: This study examined differences in attitudes and preferences between African American and White caregivers about cancer treatment and care., Methods: There were 173 White and 26 African American caregivers of advanced lung cancer patients who were recruited as a convenience sample. A telephone interview was conducted to collect information using a semi-structured questionnaire. Using logistic regression, we examined differences between racial groups concerning therapeutic and caregiving issues controlling for socioeconomic and demographic variables., Results: The regression analyses showed that African American caregivers had higher expectations for treatment outcomes (p ≤ 0.05) but poorer understanding of hospice and a stronger preference for hospice care outside the home (p ≤ 0.05). They were more likely to believe that the patient communicates with the family about cancer treatment to meet the family's expectations rather than seek emotional support (p ≤ 0.01). They were also more reluctant to endorse children's responsibility to make a treatment decision and are less likely to be fully satisfied with the decision-making process (p ≤ 0.05)., Conclusions: The findings suggest some differences in beliefs and cultural values between African American and White caregivers. African American caregivers appear to believe more in the possibility of curative care for advanced lung cancer and eschew hospice care. The findings inform possible challenges regarding communication about end-of-life treatment and care with African American caregivers and a need for the provision of adequate information and education., (Copyright © 2011 John Wiley & Sons, Ltd.)

Background: The degree of involvement by the next-of-kin in deceased organ procurement worldwide is unclear. We investigated the next-of-kin's authority in the procurement process in nations with either explicit or presumed consent., Methods: We collected data from 54 nations, 25 with presumed consent and 29 with explicit consent. We characterized the authority of the next-of-kin in the decision to donate deceased organs. Specifically, we examined whether the next-of-kin's consent to procure organs was always required and whether the next-of-kin were able to veto procurement when the deceased had expressed a wish to donate., Results: The next-of-kin are involved in the organ procurement process in most nations regardless of the consent principle and whether the wishes of the deceased to be a donor were expressed or unknown. Nineteen of the 25 nations with presumed consent provide a method for individuals to express a wish to be a donor. However, health professionals in only four of these nations responded that they do not override a deceased's expressed wish because of a family's objection. Similarly, health professionals in only four of the 29 nations with explicit consent proceed with a deceased's pre-existing wish to be a donor and do not require next-of-kin's consent, but caveats still remain for when this is done., Conclusions: The next-of-kin have a considerable influence on the organ procurement process in both presumed and explicit consent nations.

This study explores the effects of tissue requesters' relational, persuasive, and nonverbal communication on families' final donation decisions. One thousand sixteen (N = 1,016) requests for tissue donation were audiotaped and analyzed using the Siminoff Communication Content and Affect Program, a computer application specifically designed to code and assist with the quantitative analysis of communication data. This study supports the important role of communication strategies in health-related decision making. Families were more likely to consent to tissue donation when confirmational messages (e.g., messages that expressed validation or acceptance) or persuasive tactics such as credibility, altruism, or esteem were used during donation discussions. Consent was also more likely when family members exhibited nonverbal immediacy or disclosed private information about themselves or the patient. The results of a hierarchical log-linear regression revealed that the use of relational communication during requests directly predicted family consent. The results provide information about surrogate decision making in end-of-life situations and may be used to guide future practice in obtaining family consent to tissue donation.

Objective: Relational communication refers to those messages communicators naturally express that carry meaning about the type and quality of relationship they share. It is expected that patients of oncologists who express positive relational communication will be more communicatively involved in their office visits, and regret their decision for adjuvant therapy following surgery less., Methods: One hundred eighty (180) audio-recorded discussions between oncologists (n=40) and early stage (I-III) breast cancer patients were coded with the Siminoff Communication Content and Affect Program (SCCAP). The data were used to test the relationships between patient demographics, oncologist relational communication, patient communication involvement and self-reported patient decision regret., Results: After controlling for clinician clusters, oncologists' verbal (i.e., confirming messages) and nonverbal (i.e., direct and inclusive speech) relational communication is indirectly associated with lower patient decision regret via the mediating effect of greater patient communication involvement., Conclusion: Clinician relational communication provides an influential affective climate for decision-making that appears to have important effects on patients' decision confidence., Practice Implications: Clinicians should recognize the potential of their own relational messages to facilitate patients' communication involvement in decision-making during cancer care.

Families, as a unit, play an important role in the process of making decisions about care for and with adult cancer patients. Families often step in as the patient's advocate and primary decision-maker as the patient's condition deteriorates. How well caregivers fulfill that role may depend on the level of congruence between the family members and the patient. Disagreements may jeopardize processes of decision-making and treatment choice. To facilitate the clinical assessment process and to provide a tool for research, we are designing an instrument that can validly and reliably assess the level of family discord concerning the treatment of late stage cancer as they consider participation in clinical trials, palliative care and salvage treatment such as chemotherapy designed to decrease tumor burden without hope of cure. Development of the instrument is a four step process to develop and test the instrument: (1) formative interviewing with lung cancer patients and their family caregivers to identify and develop a comprehensive list of domains and items; (2) refinement of the items' wording with a sample of 43 patients and 67 family caregivers; (3) testing the reduced item pool to determine statistical and content validity and reliability with an initial of sample of 42 patients and their primary caregivers; (4) examination of the 30-item scale's properties with 160 lung cancer patients and their primary caregivers.

Purpose: The purpose of this study is to describe the factors associated with the decisions of older African American women to join the PLCO (Prostate, Lung, Colorectal and Ovarian) Cancer Screening Trial when recruited., Methods: African American women between ages 55 and 74 years who were never diagnosed with a PLCO cancer were eligible for our study. Two methods of recruitment were used. First, mailings were sent to a random sample of women describing the PLCO followed by a telephone call to determine interest in the PLCO. If women were not interested in PLCO but consented to participate in our study, they were interviewed immediately. Second, we followed up with African American women who responded to mass mailings sent out before the start of our study by the Pittsburgh PLCO office. Women completed an interview about their cancer and clinical trial knowledge, attitudes, beliefs, and behaviors. The responses of women who joined the PLCO Trial are contrasted with the responses of women who did not join., Results: Numerous factors were associated with the decision of older African American women to join the PLCO, including perceptions of cancer prevention and detection, the experience of having a loved one with cancer, knowledge of and experience with clinical trials, and beliefs regarding the benefits and risks of clinical trial participation., Conclusion: Minority recruitment to cancer clinical trials could be increased by designing interventions focused on individual, organizational, and community needs.

The authors present a communication model of shared decision making (CMSDM) that explicitly identifies the communication process as the vehicle for decision making in cancer treatment. In this view, decision making is necessarily a sociocommunicative process whereby people enter into a relationship, exchange information, establish preferences, and choose a course of action. The model derives from contemporary notions of behavioral decision making and ethical conceptions of the doctor-patient relationship. This article briefly reviews the theoretical approaches to decision making, notes deficiencies, and embeds a more socially based process into the dynamics of the physician-patient relationship, focusing on cancer treatment decisions. In the CMSDM, decisions depend on (a) antecedent factors that have potential to influence communication, (b) jointly constructed communication climate, and (c) treatment preferences established by the physician and the patient.

Purpose: To compare the informed consent processes for phase III pediatric and adult oncology clinical trials in view of the critical importance of human subjects protection in both pediatric and adult cancer care. Findings are discussed in terms of the opportunities for improving pediatric and adult oncology informed consent., Patients and Methods: A total of 219 subjects are reported on. Adult oncology patients made up 36.1% (n = 79) of the sample. Pediatric surrogates made up the remaining 63.9% (n = 140). Subjects in both studies were observed and audiotaped in conversation with their oncologists, and interviewed afterwards. Comparisons between the adult and pediatric subjects were done using chi(2) statistics and t tests., Results: Differences between the pediatric and adult informed consent processes were found. Adult oncology decision makers were, on average, more fully informed and more actively engaged by their oncologists. Pediatric decision makers were, however, given more information about survival/cure, randomization, and voluntariness. Comprehension difficulties were more frequent among pediatric decision makers. Suggestions for improvement are made in view of the differences between adult and pediatric oncology research environments., Conclusion: Ongoing efforts to improve the ethical framework of clinical cancer research need to take into account the key differences between pediatric and adult oncology informed consent. More research needs to be done to explore the differences between adult and pediatric informed consent processes in oncology.

Purpose/objectives: To examine family disagreements about treatment decisions for patients with advanced lung cancer., Research Approach: Descriptive, qualitative study., Setting: A large comprehensive cancer center in Cleveland, OH., Participants: 37 patients with stage III or IV lung cancer and 40 caregivers (24 primary and 16 secondary) from 26 families were interviewed., Methodologic Approach: Open-ended audiotaped interviews were transcribed verbatim. NUD*IST (non-numerical unstructured data indexing, searching, and theorizing) computer software (QSR International, Melbourne, Australia) was used to perform content analysis., Main Research Variables: Vast differences in opinions between patients and family caregivers about treatment decisions and care., Findings: Sixty-five percent of families reported various family disagreements that mainly concerned routine treatment decisions, discontinuation of therapeutic treatment, and use of hospice care., Conclusions: Family disagreements about treatment decisions for patients with advanced lung cancer are common and include a wide range of issues. Family members play an important role in the selection of patients' doctors, hospitals, treatment options, and provisions of care., Interpretation: The findings suggest that nurses need to be aware of differences of opinion between patients with advanced cancer and their caregivers. Knowledge of family disagreements about treatment decisions can help nurses' efforts to integrate families into decision-making processes in clinical settings to facilitate family communications and improve patients' and caregivers' satisfaction with treatment decisions.

Context: Black families donate at a lower rate than white families. To help develop effective interventions, we compared black and white families' experiences., Objective: To compare the organ donation request experiences of black and white patients' families with the hope of identifying factors to better inform consent-rate interventions among blacks., Design: Chart reviews were conducted on files of all deceased patients. Audiotaped in-person interviews were conducted with family members, and telephone interviews were conducted with involved healthcare providers and organ procurement organization staff., Setting: Nine trauma hospitals located in southwest Pennsylvania and northeast Ohio., Participants: A sample of 415 families of organ donor-eligible patients (61 black, 354 white)., Measures: Measures of families' attitudes about and experiences with donation and transplantation., Results: White families were more likely to be correctly perceived as receptive to donation. Black families viewed as receptive were less likely to be engaged in discussing as many donation-related issues as white families (p <.01). They were also less likely to have spoken to an organ procurement organization representative (p =.024) and were given fewer opportunities to consider the decision with healthcare provider or organ procurement organization staff. Black families had less knowledge about their family member's wishes, expressed less-favorable attitudes toward organ donation and the health care system, and, finally, were less likely than white families to donate organs (p =.001). A minority of black families (32.8%) knew about the need for more black donors., Conclusions: Interventions to increase consent among blacks need to encourage openness about organ donation within the black community and change healthcare provider and organ procurement organization attitudes and practices toward black families as potential donor families.

Background: This study explored the characteristics of colorectal cancer (CRC) patients who accessed Internet-based health information as part of their symptom appraisal process prior to consulting a health care provider. Method: Newly diagnosed CRC patients who experienced symptoms prior to diagnosis were interviewed. Brief COPE was used to measure patient coping. Logistic and linear regressions were used to assess Internet use and appraisal delay. Results: Twenty-five percent of the sample (61/242) consulted the Internet prior to visiting a health care provider. Internet use was associated with having private health insurance (odds ratio [OR] = 2.55; 95% confidence interval [CI] = 1.20-5.43) and experiencing elimination symptoms (OR = 1.43; 95% CI = 1.14-1.80) and was marginally associated with age (OR = 0.96; 95% CI = 0.93-0.99). Internet use was not related to delayed medical care seeking. Conclusion: Internet use did not influence decisions to seek medical care. The Internet provided a preliminary information resource for individuals who experienced embarrassing CRC symptoms, had private health insurance, and were younger. (Contains 2 tables.)

Decisions about how best to clinically care for young children born with Disorders of Sex Development (DSD) can be challenging because some decisions are irreversible, have lasting physical and mental health effects, and are frequently made before the affected person is able to participate in decision-making. This multi-stage study involved (1) the development of a web-based decision support tool (DST) for parents of infants or young children and the clinicians caring for them; (2) the assessment of communications and decision making between DSD specialists and parents both before and after introduction of the DST; and (3) interviews with a broad range of stakeholders regarding optimizing the DST and integrating it into usual care. Experience over the course of the 3 stages of this research suggests the need for further refinement of the DST to increase acceptability to all stakeholder groups, the necessity to address misperceptions by providers that they are already accomplishing all aspects of SDM in regular care without a DST and misunderstandings by parents that decisions are unnecessary because only a single option is apparent, and to better incorporate the tool into regular clinic workflow.

Introduction: Organ Procurement Organizations seek authorization for tissue donation from next-of-kin of deceased patients. Best practices for achieving contact and authorization are unknown, notably, authorization rates are lower for Black compared to White patients. Research Questions: Can next-of-kin (NOK) contact and authorization rates be improved if they are texted prior to telephone contact? Is a text message containing an infographic more effective, and does an infographic culturally tailored to Black families improve contact and authorization rates in the Black population? Design: This three-armed randomized trial compared (1) telephonic contact initiation (control condition); (2) generic text messaging prior to telephonic contact; and (3) text messaging one of two versions of an infographic prior to telephonic contact: (a) a generic infographic or (b) a culturally tailored infographic (sent to Black NOK only) at one Northeastern Organ Procurement Organization. Results: Tissue Donation Professionals (N = 47) and 2399 White and 745 Black NOK were included, of which 35.6% were registered donors. Authorization rates were much higher for White than Black (40.1% v 16.3%, P < 0.0001). The generic infographic resulted in significantly lower rates of contact for White NOK compared to the control condition 83.5% v 89.5%, P = 0.002), but study arm assignments were not otherwise associated with differences in contact or authorization rates. Conclusion: Although the analysis did not find a benefit for text messaging, it is possible that training for staff making requests and refining the content of the messaging could be more effective. [ABSTRACT FROM AUTHOR]

OBJECTIVE The extent of shared decision making (SDM) use in the care of Black patients is limited. We explored preferences, needs, and challenges of Black patients to enhance SDM offerings. METHODS We performed interviews with 32 Black patients receiving type 2 diabetes care in safety-net primary care practices caring predominantly for Black people. RESULTS The following 4 themes emerged: preference for humanistic communication, need to account for the role of family in decision making, need for medical information sharing, and mistrust of clinicians. CONCLUSION Given the dearth of research on SDM among ethnic and racial minorities, this study offers patient-perspective recommendations to improve SDM offerings for Black patients in primary care settings. To enhance SDM with Black patients, acknowledgment of the importance of storytelling as a strategy, to place medical information in a context that makes it meaningful and memorable, is recommended. Triadic SDM, in which family members are centrally involved in decision making, is preferred over classical dyadic SDM. There is a need to reconsider the universalism assumption underlying contemporary SDM models and the relevancy of current SDM practices that were developed mostly without the feedback of participants of ethnic, racial, and cultural minorities. [ABSTRACT FROM AUTHOR]

Aim: Many emerging adults disengage from early intervention in psychosis (EIP) services prematurely. Service disengagement may be in part due to having unresolved treatment decision‐making needs about use of mental health services. A basic understanding of the decision‐making needs of this population is lacking. The purpose of this qualitative study was to identify the range of treatment decisions that emerging adults face during their initial engagement in an EIP program and elucidate barriers and facilitators to decision‐making. Methods: Twenty emerging adults with early psychosis were administered semistructured interviews to capture treatment decision‐making experiences during the first six months after enrolment in an EIP program. Interviews were audio‐recorded and transcribed verbatim. Responses were independently coded by two authors using an integrated thematic analysis approach; differences in coding were discussed to consensus. Data analysis was facilitated using NVivo 12 Plus. Results: Emerging adults identified numerous decisions faced after EIP enrolment. Decisions pertaining to life and treatment goals and to starting and continuing psychiatric medication were commonly selected as the most difficult/complicated. Decision‐making barriers included not having the right amount or type of information/knowledge, social factors (e.g., lacking social support, opposition/pressure), lacking internal resources (e.g., cognitive and communication skills, self‐efficacy, motivation) and unappealing options. Obtaining information/knowledge, social supports (e.g., connection/trust, learning from others' experiences, encouragement), considering personal values, and time were decision‐making facilitators. Conclusions: This study informs development and optimization of interventions to support decision‐making among emerging adults with early psychosis, which may promote service engagement. [ABSTRACT FROM AUTHOR]

Objective: Informal caregivers play a fundamental role in care and decision making with hematological cancer patients. Concordant patient-caregiver communication is a critical antecedent to high quality decision making. Little is known about patterns of dyadic communication throughout the cancer treatment continuum. The objective of this study was to assess patterns of cancer communication concordance regarding treatment and care among hematological cancer patients undergoing active treatment and their informal caregivers and test whether patterns were associated with participant characteristics.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. Latent Class Growth Models (LCGM) were used to analyze longitudinal data captured using Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) and the association with participant characteristics.Results: White patient-caregiver dyads demonstrated decreased communication concordance and African American dyads demonstrated increased communication concordance over time. Lower communication concordance was found among dyads with lower levels of education and income, and cancers diagnosed at more advanced stages; these relationships were stable over time. Modeling identified the presence of three distinct communication groups (Stable Concordant (57.4%), Fluctuating Medium Concordant (37.8%), High Discordant (5.4%)) that differed by baseline level of communication concordance, patterns of concordance over time, race, income and the dyad relationship.Conclusions: Patient-caregiver cancer communication concordance was not static overtime. Results suggest the presence of a new dyadic cancer communication typology that could help preemptively identify dyads at risk for communication difficulties that impede treatment decision making. [ABSTRACT FROM AUTHOR]

Introduction: Family denial of organ donation from deceased donor-eligible patients is a major contributor to the deficit of transplantable organs in the United States. Research Question: Does an evidence-based communication intervention improve deceased organ donor authorization rates from family decision-makers? Design: This implementation and dissemination study used Communicating Effectively about Donation on Organ Procurement Organization professionals responsible for discussing donation and obtaining authorization from family decision-makers. A 14-month, nationwide social marketing campaign generated a sample of 682 requesters, yielding a final analyzable sample of 253 participants. Serving as their own controls, participants spent the first 3 months in a preintervention period, completed the web-based intervention, and progressed to a 3-month postintervention period. Participants completed brief online weekly surveys to assess the intervention's impact on their communication skills. Results: Authorization rates did not improve overall between the pre- and postintervention periods. A differential effect of the intervention on 3 distinct groups of requesters was found: one group exhibited high and stable authorization rates pre–post (78%-74%); a second group had low initial authorization rates that increased after exposure to the intervention (46%-73%); the third had low and variable rates of authorization that failed to improve after the intervention (45%-36%). Conclusion: This study underscores the value of evidence-based communication training. Training targeted to requesters' skill levels is needed to realize overall improvements in individual performance, the quality of donation discussions, and rates of family decision-maker authorization to solid organ donation. [ABSTRACT FROM AUTHOR]

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions. [ABSTRACT FROM AUTHOR]

Aims: Confidentiality of personal identifiers potentially linking the genetic results from biobanking participants back to the donor and donor relatives is a concern. The risks associated with a breach of confidentiality should be ascertained when biobanks collect samples requiring the consent of a family decision maker (FDM) from deceased organ and tissue donors. This article explores FDM knowledge and opinions regarding risks associated with participation in biobanking research in the context of the Genotype-Tissue Expression (GTEx) Project. Methods: Data collection included a survey completed by organ procurement organization requesters ( n = 37) and semistructured telephone interviews with the FDMs ( n = 85). Results: Donor families were more likely to know that there was a risk that a patient's identity could be revealed through a breach of confidentiality ( p < 0.05). They also were more likely to understand that researchers using biobanked tissue would not have access to the patient's exact identity ( p < 0.05). FDMs who refused donation were more concerned about risks than donors and reported lower levels of support for medical research in general. Finally, families were frequently interested in the return of results and willing to trade absolute confidentiality for participation. Conclusions: Clear discussion of the risk of breach of confidentiality is needed during the consent process. The risk and benefit equation could be equalized if studies such as GTEx offered genomic results to interested participants. [ABSTRACT FROM AUTHOR]

The initial moments of conversations, particularly discussions addressing difficult or unexpected health topics, establish the context and tone of the entire discussion. We examined how elements of relational and instrumental communication occurring within the first five minutes of the request impacted the length of the discussion. A sample of 16 U.S. tissue banking organizations and their staff (n = 226) making telephone requests for donation to families of tissue-donation eligible patients (n = 1,465) agreed to participate in the research. The first five minutes of 430 (29.4%) audiorecorded request conversations were qualitatively coded and analyzed. The primary outcome measure was whether the conversation continued beyond the first five minutes (yes/no). Aspects of both relational and instrumental communication were associated with discussion length. A logistic regression analysis found that the total number of distinct topics disclosed and requesters’ vocal affect during the discussion as well as characteristics of the family member approached about donation predicted conversational maintenance. This research demonstrates that “thin slices” of effective relational and instrumental communication can have a significant, positive impact on conversation length. [ABSTRACT FROM PUBLISHER]

Context—A large racial disparity exists in organ donation. Objective—To identify factors associated with becoming a registered organ donor among African Americans in Alabama. Methods—Concurrent mixed methods design guided by the Theory of Planned Behavior to analyze African Americans’ decisions to become a registered organ donor by using both qualitative (focus groups) and quantitative (survey) methods. Results—The sample consisted of 22 registered organ donors and 65 nonregistered participants from 6 focus groups completed in urban (n = 3) and rural (n = 3) areas. Participants emphasized the importance of the autonomy to make one’s own organ donation decision and have this decision honored posthumously. One novel barrier to becoming a registered organ donor was the perception that organs from African Americans were often unusable because of the high prevalence of chronic medical conditions such as diabetes and hypertension. Another novel theme discussed as an advantage to becoming a donor was the subsequent motivation to take responsibility for one’s health. Family and friends were the most common groups of persons identified as approving and disapproving of the decision to become a donor. The most common facilitator to becoming a donor was information, whereas fear and the lack of information were the most common barriers. In contrast, religious beliefs, mistrust, and social justice themes were infrequently referenced as barriers to becoming a donor. Conclusion—Findings from this study may be useful for prioritizing organ donation community-based educational interventions in campaigns to increase donor registration. [ABSTRACT FROM AUTHOR]

Abstract: Background: Disagreements between cancer patients and their caregivers about treatment and care can affect the patient''s physical and mental well-being. Therefore it is important to understand if oncologists can accurately identify the presence of patient–caregiver decisional conflict. This study examined assessments made by lung cancer patients, their caregivers, and their oncologists regarding patient–caregiver disagreements concerning treatment and care decisions. Participants and methods: We assessed the extent to which the patient, caregiver, and oncologist reported disagreement between the patient and the family member regarding treatment decisions in 134 patient–caregiver–oncologist triads. Descriptive statistics were used to explore rates of concordance amongst all possible combinations of raters. Loglinear models were tested for 3-way agreement. Results: Most patient–caregiver pairs, 82.1% (n =110), reported agreement concerning presence or absence of decisional conflict. Oncologists were more successful in detecting absence of conflict than the presence of conflict. When the caregiver and the oncologist agreed, it was regarding the absence of conflict (64.9%), rather than the presence of conflict. In 10.6% (n =15) of cases, oncologists reported that conflictual relationships negatively impacted their ability to provide patient care. Conclusions: Recent models of cancer patient care promote including the caregiver fully in the process while respecting the primacy of the patient''s perspective. However, these models assume that the oncologist will recognize when disagreements exist and be able to assist in conflict resolution. The degree to which the oncologist identified that conflict exists and implications for their ability to provide patient care when familial disagreements existed are discussed. [Copyright &y& Elsevier]

Context--Interpersonal relations with health care providers influence families' decisions to consent to solid-organ donation. However, previous research has been based on retrospective interviews with donation-eligible families and has not directly examined the interpersonal interactions between families and organ procurement coordinators. Objective--To increase understanding of the interpersonal interaction between procurement coordinators and families during the organ donation discussion, with special attention to the influence of the sex and race of the procurement coordinator and the race of the potential donor's family. Design--A descriptive study in which standardized patients portrayed family members interacting with actual procurement coordinators in simulated donation request scenarios. Setting and Participants--Thirty-three videotaped interactions between standardized patients and 17 procurement coordinators involving 2 different scenarios depicting deceased donation were evaluated. Main Outcome Measures--Video recordings were rated by independent coders. Coders completed the Impact Message Inventory-Form C, the Participatory Style of Physician Scale, and the Siminoff Communication and Content and Affect Program--Global Observer Ratings scale. Results and Conclusions--African American procurement coordinators, particularly African American women, were rated as more controlling and work-oriented than white procurement coordinators. Male procurement coordinators were more affiliative with the white family than the African American family, whereas female procurement coordinators were slightly less affiliative with the white family. African American procurement coordinators expressed more positive affect when interacting with the African American family than the white family, whereas the opposite was true for white procurement coordinators. Research is needed to cross-validate these exploratory findings and further examine cultural mistrust between procurement coordinators and families of ethnic minorities, especially given the negative attitudes of many minorities toward donation. [ABSTRACT FROM AUTHOR]

The objective of this study was to assess potential age-related differences in oncologist communication during conversations about adjuvant therapy decisions and subsequent patient decision outcomes. Communication was observed between a cross-section of female patients aged 40 to 80 with early-stage breast cancer (n=180) and their oncologists (n=36) in 14 academic and community oncology practices in two states. Sources of data included audio recordings of visits, followed by post-visit patient interviews. Communication during the visit was assessed using the Siminoff Communication Content and Affect Program. Patient outcome measures included self-reported satisfaction with decision, decision conflict, and decision regret. Results showed that oncologists were significantly more fluent and more direct with older than middle-aged patients and trended toward expressing their own treatment preferences more with older patients. Satisfaction with treatment decisions was highest for women in their 50s and 60s. Decision conflict was significantly associated with more discussion of oncologist treatment preferences and prognosis. Decision regret was significantly associated with patient age and education. Older adults considering adjuvant therapy may find that oncologists' communication accommodations to perceived deficiencies in older adult cognition or communication challenge their decision-making involvement. Oncologists should carefully assess patient decision-making preferences and be mindful of accommodating their speech to age-related stereotypes. [ABSTRACT FROM AUTHOR]

Background: Decision aids are tools that help patients make specific and deliberative choices among options. This study was a group randomized controlled trial of a novel decision aid to help patients with breast cancer make adjuvant therapy (AT) decisions. Methods: Fourteen oncology practices (n=58 physicians) were randomized to receive the decision aid or a control pamphlet. Complete data were obtained from 405 patient–oncologist pairs. Eligible patients had stage I–III disease and had completed their primary treatment. The decision aid is a simple to use computer program, titled Adjuvant!, that provides estimates of outcome with and without AT. Graphical representations of outcome are shared with patients. Consultations were audiotaped, patients interviewed, and physicians completed a self-administered survey. Results: In a multivariable model, the 54 patients (13.3%) who took no AT were more likely to have received the decision aid (p=0.02). A differential effect of the Adjuvant! Decision Guide was noted between node negative and positive patients. It was stated by 86.2% of patients that the decision aid was influential when making their treatment decision. Over 95% of patients reported that the Adjuvant Decision Guide was easy to understand and 75% of physicians believed that it helped them understand their patient's treatment preferences and 81.4% reported the information as useful for themselves. Conclusions: This study showed that a decision aid made a difference in the choice of whether or not to take AT. The decision aid allowed patients and physicians to consider the benefits of AT in an easy to understand format. Treatment decisions were more individualized for patients in the intervention than in the control group. The use of the decision aid was acceptable to both patients and physicians. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Scholars have debated the role that altruistic considerations play—and should play—in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) “the future” and other vaguely defined recipients. Clinicians initiated most (80%) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations. [ABSTRACT FROM AUTHOR]

Objective. Oncology patients often seek involvement in their medical consultations. Such involvement is endorsed by most health care providers and mirrored in practice guidelines. However, oncologists exhibit great variation in how they provide patients with disease-relevant information, and many remain reluctant to do so at all. The authors examined the impact of a patient-specific decision aid on women’s decisions about adjuvant therapy for breast cancer.Method. 386 women with breast cancer were randomized to receive either an informational pamphlet about adjuvant therapy (usual care) or a patient-specific, evidence-based decision aid about adjuvant therapy. The authors compared rates of adjuvant therapy between the groups controlling for age, education, marital status, race, tumor severity, and practice type of their physician (university-based or community-based).Results. Among women with low tumor severity, only 58% (35/60) of women in the decision aid group chose adjuvant therapy, compared to 87% (33/38) of their counterparts in usual care (P < 0.01).Conclusions. This study illustrates the important impact of medical decision aids on treatment choices, particularly for patients for whom treatment has little benefit. In the case of adjuvant therapy for breast cancer, providing individualized, evidence-based risk information for shared decision making resulted in fewer women with low tumor severity choosing adjuvant treatment. [ABSTRACT FROM PUBLISHER]

Abstract: This study examined the differences of opinion between cancer patients and caregivers with regard to treatment and care decisions. 184 advanced lung cancer patients and 171 primary caregivers were recruited as a convenience sample from hospitals in Cleveland, Ohio. A telephone interview was conducted to collect data using a semi-structured questionnaire. Nonparametric tests and regression analysis were performed. The findings showed that patients and caregivers reported significant disagreement on three main issues: trade-off between treatment side effects and benefits; reporting treatment side effects to physicians, and hospice care. Caregivers were more concerned about patient''s quality of life and more willing to discuss hospice issues than were patients (p ≤ 01). Perceived family disagreement is associated with depression in both patients and caregivers (p ≤ 01; R 2=8%). The study provided empirical evidence for patient–caregiver disagreement about treatment and care decisions and its significant adverse impact on both patients and caregivers. [Copyright &y& Elsevier]

The contemporary healthcare field operates according to an autonomy model of medical decision-making. This model stipulates that patients have the right to make informed choices about their care. Shared decision making (SDM) has arisen as the dominant approach for clinicians and patients to collaborate in care planning and implementation. This approach relies heavily on normative (rational) decision-making processes, and often leaves out descriptive influences that stem from personal, social, and environmental factors and explain how decisions are typically made in the real world. The lack of attention to descriptive decision-making limits SDM in many ways. A multi-level approach to expanding the practice of SDM is proposed, including tailoring the decision encounter based on patients' social, cultural, and environmental context; using relational elements strategically as part of the SDM process; and modifying incentive models to promote greater attention to descriptive impacts on decision-making. These modifications are expected to make SDM, and thus patient care, more inclusive, effective, and acceptable to diverse patients. • Shared decision making (SDM) gives patients greater choice over their healthcare. • Currently, SDM is limited by a narrow focus on rational decision-making processes. • Greater attention to descriptive decision-making is needed to support SDM. [ABSTRACT FROM AUTHOR]

Background: Less than 5% of all adult patients with cancer enter clinical trials. These rates are lower in racial/ethnic minority populations, negatively affecting the generalizability and validity of trial results. Many studies have identified barriers to minority enrolment, yet few have gathered in-depth insights into minority patients' reasons for trial refusal. We aimed to (1) explore trial refusal reasons in a sample of African American (AA) patients with cancer who declined trial participation and (2) gather patients' perceptions of the potential benefit of an array of decision support tools. Methods: Participants were 22 consecutively recruited AA patients with cancer who had declined participation in a therapeutic clinical trial. Within 3 months of the trial refusal decision, participants completed an audio-recorded semistructured interview that asked about demographic and disease information, psychosocial factors, and patients' experience with clinical trials. Two months later, participants completed a questionnaire that asked about their trial decision. Results: Few patients received positive recommendations about joining a trial. Patients gave multiple refusal reasons. Only two participants refused to join a clinical trial as a result of issues of mistrust. Most participants refused as a result of fears of additional burdens and adverse effects. Many patients and family members misunderstood trial information. Family members mostly recommended against trial participation. Most patients felt that question prompt lists or decision aids would assist information seeking and decision making. Conclusion: Low rates of physician recommendations for clinical trial participation of AA patients with cancer warrant further investigation. Interventions to reduce misunderstandings and aid decision making, both within and external to the clinical interaction, need to target both patients and family members. [ABSTRACT FROM AUTHOR]