Reconsidering Autonomy: Asian Americans' Use of Relational Autonomy in Organ Donation Decisions.

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.

Cancer Caregiver Anxiety Over Time: The Influence of Palliative Care.

To explore anxiety experienced by caregivers providing home-based, end-of-life care to patients with cancer. We examined the relationship between caregiver anxiety and receipt of palliative care by the patient. A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 12 months or until patient death.

Beliefs about COVID-19 testing and treatment: A national survey of Black and White adults.

Objectives: Knowledge, access, and use of testing and antiviral treatments is critical to managing and mitigating the continuing burden of the novel Corona Virus (COVID-19) in the United States. This study measured knowledge, attitude, behaviors, and self-reported barriers towards COVID-19 testing and outpatient anti-viral medications (OPA) treatments among Black and older individuals who face greater hospitalization and mortality from the disease.

Study Design: Cross-sectional structured survey.

The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.

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.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

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).

Developing online communication training to request donation for vascularized composite allotransplantation (VCA): improving performance to match new US organ donation targets.

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.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

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. The impact of the secondary caregiver's absence on the primary caregivers' well-being is understudied.

Messaging White and Black Next of Kin in Advance to Promote Authorization for Tissue Donation.

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. 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? 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.

Economic costs of family caregiving for persons with advanced stage cancer: a longitudinal cohort study.

Purpose: To form a multifaceted picture of family caregiver economic costs in advanced cancer.

Methods: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks.

Pre-diagnosis Symptoms, Attributed Causes, and Healthcare Seeking Assets of Younger Colorectal Cancer Survivors.

Younger onset colorectal cancer (CRC) rates continue to rise. Survivors younger than the requisite age of population-based screening guidelines experience adverse symptoms, longer appraisal delays, and more advanced-stage diagnoses. This secondary analysis of interviews with n=252 recently diagnosed CRC survivors was completed to compare younger and older survivors' symptoms, attributed causes, and healthcare seeking assets.

A Rapid Scoping Review of the Dual Advocacy Model for Donation Conversations.

Introduction: Increasing family authorization for donation is critical to address the shortage of organs for transplantation, yet there is no standardized method for leading conversations with families about donation.

Objective: The aim of this rapid scoping review is to identify research assessing the components of dual advocacy, a model to discuss organ donation with grieving families.

Methods: PubMed, Web of Science, and grey literature were searched for studies published from 2012 to the present.

The many "costs" of transportation: Examining what cancer caregivers experience as transportation obstacles.

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.

Direct and Indirect Effects of a Web-Based Educational and Communication Skills Intervention "Promotoras de Donación" to Increase Donor Designation in Latinx Communities: Evaluation Study.

Background: Latinx populations are severely underrepresented among organ donors compared with the non-Hispanic White population. The Promotoras de Donación e-learning module was developed to train Latinx lay health educators (ie, promotoras) to discuss deceased organ donation and promote donor designation within their communities.

Objective: This paper described the results of 2 studies designed to assess the direct and indirect effects of the module on promotoras' and mature Latinas' organ donation and donor designation knowledge, attitudes, and behaviors.

Cancer patient and caregiver communication about economic concerns and the effect on patient and caregiver partners' perceptions of family functioning.

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.

Disparities in Shared Decision-Making Research and Practice: The Case for Black American Patients.

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.

A mixed-methods examination of public attitudes toward vascularized composite allograft donation and transplantation.

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.

The psychosocial burden of visible disfigurement following traumatic injury.

Hundreds of thousands of individuals experience traumatic injuries each year. Some are mild to moderate in nature and patients experience full functional recovery and little change to their physical appearance. Others result in enduring, if not permanent, changes in physical functioning and appearance.

Culturally Tailored and Community-Based Social Media Intervention to Promote Organ Donation Awareness among Asian Americans: "Heart of Gold".

Organ donation disparities among ethnic minorities have persisted for decades, especially among Asian Americans (AAs). AAs represent a substantial proportion of the national transplant waitlist but have historically had the lowest organ donation rate in the United States. Community based and culturally tailored (CBCT) interventions are needed to increase donor designation within AA communities.

Evaluation of an eLearning System to Train Health Professionals to Communicate about Vascularized Composite Allotransplantation with Donor Families.

Vascularized composite allotransplantation (VCA) donation relies on obtaining surrogate authorization. Yet, many donor professionals have limited experience discussing composite allograft donation. Using virtual and interactive elements, the eLearning program, Communicating Effectively about Donation for Vascularized Composite Allotransplantation (CEaD-VCA), was developed to enhance the quality of donor professionals' communication approach.

Organ Donation Willingness Among Asian Americans: Results from a National Study.

Asian Americans are the fastest growing racial group in the USA, but their health disparities are often overlooked. Although their needs for transplantable organs are substantial, they have the lowest rates of organ donation per million compared to other Americans by race. To better understand Asian Americans' disposition toward organ donation, a self-administered survey was developed based on formative data collection and guidance from a Community Advisory Board composed of Asian American stakeholders.

Understanding cancer caregiver burden over time: Dyadic assessments of family cohesion, conflict and communication.

Objective: Previously we identified three distinct cancer communication concordance groups among cancer patient-caregiver dyads. This secondary analysis examined patient and caregiver reports of family functioning (cohesion and conflict) as associated with cancer communication concordance and assessed each as independent predictors of perceived caregiver burden among hematological cancer caregivers.

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.

Facilitating treatment engagement for early psychosis through peer-delivered decision support: intervention development and protocol for pilot evaluation.

Background: Emerging adults with early psychosis demonstrate high rates of service disengagement from critical early intervention services. Decision support interventions and peer support have both been shown to enhance service engagement but are understudied in this population. The purposes of this article are to describe the development of a novel peer-delivered decision coaching intervention for this population and to report plans for a pilot study designed to gather preliminary data about its feasibility, acceptability, and potential impact.

The presence of a secondary caregiver differentiates primary cancer caregiver well-being.

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.

Reliability and validity of the Cancer Health Literacy Test - Chinese versions: CHLT-30-Chinese and CHLT-6-Chinese.

Aims: The Cancer Health Literacy - 30 (CHLT-30) and Cancer Health Literacy - 6 (CHLT-6) are widely used instruments to measure cancer health literacy and to identify individuals with limited cancer health literacy, respectively. This study evaluated the psychometric performance of both instruments in Chinese cancer patient population.

Methods: The back-translation method was used in cross-cultural adaptation.