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. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h. RESULTS: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. CONCLUSIONS: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. IMPLICATIONS FOR CANCER SURVIVORS: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.

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. The instrument was deployed online, and quota sampling based on the 2017 American Community Survey was used to achieve a sample representative (N = 899) of the Asian American population. Bivariate tests using logistic regression and the chi-square test of independence were performed. Over half (58.1%) of respondents were willing to be organ donors. A majority (81.8%) expressed a willingness to donate a family member's organs, but enthusiasm depended on the family member's donor wishes. Only 9.5% of respondents indicated that the decision to donate their organs was theirs alone to make; the remainder would involve at least one other family member. Other key sociodemographic associations were found. This study demonstrates both the diversity of Asian Americans but also the centrality of the family's role in making decisions about organ donation. Practice and research considerations for the field are also presented.

Donor Designation Among Mature Latinas and Lay Health Educators (Promotoras): A Mixed-Methods Study.

BACKGROUND: Despite positive public attitudes toward solid organ donation in the United States, some of the lowest rates of donor designation persist among older adults and Latinx populations. AIMS: To identify barriers and facilitators to organ donation and donor designation among lay health educators (promotoras) and mature Latina (50+ years). METHODS: An explanatory sequential mixed-method design was employed, with telephone surveys followed by focus group interviews, to assess and understand the nuances of organ donation and donor designation knowledge, attitudes, and practices among promotoras and mature Latinas in Chicago (IL), Philadelphia (PA), and San Antonio (TX). Descriptive statistics summarized quantitative survey data; thematic content analysis was performed on qualitative data. RESULTS: Twenty-nine promotoras and 45 mature Latina participated in both the surveys and focus groups (N = 74). Most participants (90%) had limited knowledge of organ donation but reported being "somewhat" or "strongly" in favor of donation (70%); 40.5% were registered donors. Participants lacked knowledge about the registration process and its legal standing and upheld concerns that registered donors would be vulnerable to organ traffickers or targets for murder. Themes emerging from the group interviews revealed additional barriers to designation including distrust of the medical establishment, perceptions of inequities in organ allocation, and family resistance to discussing death. DISCUSSION: Low donor designation rates are primarily driven by concerns about organ trafficking and the fairness of the allocation system, particularly for undocumented immigrants. CONCLUSIONS: The results informed development of a culturally targeted educational and communication skills intervention to increase donor designation in Latinx communities. TRIAL REGISTRATION: ClinicalTrials.gov NCT04007419.

A Comparison of the Content and Quality of Organ Donation Discussions with African American Families Who Authorize and Refuse Donation.

BACKGROUND: This study compares the experiences of African American (AA) families who authorized organ donation with those who refused. METHODS: Large administrative datasets were obtained from 9 partnering Organ Procurement Organizations (OPO). Initial analyses used these data to assess authorization among African American families (n = 1651). Subsequent analyses were performed using a subsample of interview data of AA family decision makers (n = 276). Initial bivariate analyses tested differences in study variables by authorization status (donor/nondonor). Two separate multilevel logistic regressions examined associations between independent variables and family authorization. RESULTS: Analyses of the administrative datasets found that refusal was more likely when the patient was older, female, a DCD case, and not referred in a timely manner; refusal was less likely when families initiated donation conversations. Interview data revealed that families who refused donation were less likely to respond favorably to initial donation requests and reported less satisfaction with the overall approach, amount of time with OPO staff, and how questions were handled. Refusing families were also more likely to feel pressured, had less comprehensive donation discussions, and rated the OPO requesters' communication skills lower. No significant differences in organ donation attitudes were found between families who authorized donation and those refusing to donate. CONCLUSIONS: The study suggests that AA families making decisions about organ donation would benefit from culturally appropriate discussions. TRIAL REGISTRATION: Clinical Trial Notation: NCT02138227.

Family First: Asian Americans' Attitudes and Behaviors Toward Deceased Organ Donation.

Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.

Utility and Usability of the Rapid Assessment of Hospital Procurement Barriers in Donation (RAPiD) as a Tool for OPO Hospital Development Staff.

CONTEXT: Few systematic assessment tools are available to organ procurement organizations (OPOs) for evaluating donation climates of hospitals in their donation service areas (DSAs). The Rapid Assessment of hospital Procurement barriers in Donation (RAPiD) was developed for OPO hospital development staff to assess the organ donation climate of hospitals. OBJECTIVE: To implement a national test of the RAPiD to examine its efficacy and usability by OPO hospital development staff. DESIGN: Two-arm randomized design, comparing implementation of RAPiD protocol between qualitatively trained researchers (n = 7) and OPO hospital development staff (n = 24); all evaluators received the same training assessments of high-yield hospitals. SETTING: A total of 77 hospitals in DSAs of 8 OPOs. PARTICIPANTS: A total of 2552 health-care providers (HCPs) in high organ donor potential units. MAIN OUTCOME MEASURES: Twenty-four donation-related attitudes, knowledge, and behaviors. RESULTS: More HCPs interviewed in the autonomous condition were positive toward the concept of organ donation. However, HCPs in the assisted condition were more candid about and critical of the OPO. As for knowledge, fewer HCPs in the autonomous condition reported familiarity with the donation process, need for donors, and generally accepted timely referral criteria. With respect to behaviors, more respondents in the autonomous condition reported frequent or occasional contact with the OPO and routine or occasional referral criteria use. Due to issues of bias, inadequate research experience, conflicts of interest, and ongoing OPO hospital development initiatives, the RAPiD's usability by OPO-based hospital development staff is questionable and not recommended in its current form. A next generation of the RAPiD is described for future consideration.