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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. [ABSTRACT FROM AUTHOR]

Introduction: 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. Research Questions: We tested the effectiveness of the eLearning program in improving donor professionals' knowledge, preparedness, and confidence leading discussions with families. Design: Donor professionals who primarily obtain family authorization for solid organ and tissue donation were recruited from 2 regional Organ Procurement Organizations. The training was evaluated using a nonrandomized pre-post design. Participants completed an online survey with items assessing their knowledge, preparedness, and confidence for donation discussions. Pre- and post-training responses were compared using paired sample t-tests. Results: The sample included 42 donor professionals. The majority (71.4%) had at least 3 years of work experience, and over half (52.4%) had no experience discussing VCA donation with families. Post-training, significant increases in mean knowledge scores (6.4 pre to 7.0 post, P < 0.01) and mean self-reported preparation (6.6 pre to 7.9 post, P < 0.0001) were observed. There were significant increases in mean confidence scores for discussing face (6.2 pre to 7.9 post, P < 0.0001) and hand (6.2 pre to 8.0 post, P < 0.0001) transplants. Conclusion: The CEaD-VCA program was effective in increasing donor professionals' knowledge, preparation, and confidence when discussing donation, and holds potential for improving donor professional communication during donation discussions. [ABSTRACT FROM AUTHOR]

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. [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]

In-person interviews with two hundred and twenty-one older African Americans and whites in Allegheny County, Pennsylvania on their use of self care activities in the care of one of four chronic illnesses (chronic obstructive pulmonary disease (COPD), heart disease, diabetes mellitus, and arthritis, addressed which types of self care they used for each of these illnesses) the similarities and differences between African Americans and whites in their use of self care and how self care is initiated, modified and integrated into a context that includes help from others. The most common response in each of the illnesses was the use of medications or medical treatments by both African Americans and whites. However, there were some differences in the self care practices used by these two groups by illness type. Whites reported monitoring their illness significantly more than African Americans for diabetes and using assistive devices in the management of COPD significantly more than African Americans. While both African Americans and whites practice self care similarly in the management of heart disease, African Americans reported greater use of exercise in their management of arthritis. The amount of assistance provided by others in support of self care varied by illness and by African American and white. The differences in self care usage may be attributed to many factors, among them, differences in cultural experiences with the illness, health beliefs regarding its efficacy and the amount of assistance received from informal supports. [ABSTRACT FROM AUTHOR]

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. Using the previously identified communication groups this analysis prospectively examines patient and caregiver perceptions of family cohesion and conflict and the association with burden over time.Results: Caregiver burden decreased over time. Caregiver, but not patient perceptions of family cohesion decreased over time; decreased cohesion and increased conflict was associated with greater cancer communication discordance.Conclusions: This work lends further support to the use of cancer communication congruence typologies for identifying potentially vulnerable dyads. Discordant cancer communication and declining caregiver perceptions of family cohesion may represent opportunities to intervene using family focused supportive services.Practice Implications: Only caregiver perceptions of family functioning were associated with burden therefore identifying and supporting those caregivers with worsening communication and family function is important. [ABSTRACT FROM AUTHOR]

Objectives: 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. Methods: 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. Data collected included qualitative, quantitative, and observational data; this analysis utilizes the quantitative data. Longitudinal Latent Growth Models were used to characterize the heterogeneity of primary caregiver anxiety over time. The influence of palliative care on caregiver anxiety over time was assessed. Characteristics associated with membership in the trajectory groups rendered from those models are presented. Results: The majority of caregivers were female (73.9%), white (54.9%), and patient spouses (45.3%). Three classes of caregivers were identified based on their anxiety scores over time (low, elevated, and high). The 2 groups who had elevated and high anxiety had significant increases in anxiety over time. Controlling for patient receipt of palliative care attenuated those increases. Caregivers with the lowest level of anxiety were more likely to be Black, report fewer symptoms of depression or caregiver burden and higher self-rated physical health. Caregivers who were younger reported higher anxiety. Conclusions: Our analysis detected 3 distinct cancer caregiver groups reporting low, elevated, and very high levels of anxiety. Caregivers with elevated or high anxiety also demonstrated increasing anxiety overtime; however increases were attenuated with patient receipt of palliative care. For cancer caregivers with elevated and high levels of anxiety, palliative care buffers further deterioration of their mental health., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: We sought to identify factors associated with appointment nonattendance for diagnostic testing of coronary artery disease among veterans. For patients with possible heart disease, appointment nonattendance may seriously compromise short- and long-term outcomes. Understanding factors associated with nonattendance may help improve care while reducing inefficiency in service delivery., Methods: We surveyed patients who attended (n = 240) or did not attend (n = 139) a scheduled cardiac appointment at a midwestern Veterans Administration medical center. Multivariable regression models were used to assess factors associated with nonattendance., Results: Younger age, lower income, unemployment, and longer wait times for appointments were predictive of nonattendance. Nonattenders reported fewer cardiac symptoms and were more likely to attribute their symptoms to something other than heart disease. Nonattendance was also associated with a coping style characterized by avoidance of aversive information. Logistical issues, fear of diagnostic procedures, disbelief that one had heart disease, and medical mistrust were some of the reasons given for missed appointments., Conclusions: Appointment nonattendance among veterans scheduled for cardiology evaluation was associated with several important cognitive factors. These factors should be considered when one is designing clinical systems to reduce patient nonattendance.

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.

Context: Families' understanding of brain death may be a factor that contributes to decisions regarding organ donation., Objective: To examine factors related to families' understanding of brain death and how those factors affect families' decisions about organ donation., Design: Chart reviews were conducted on all deceased patients at 9 trauma hospitals. Interviews were then conducted with healthcare providers who spoke with families about organ donation and family decision makers., Setting: Southwest Pennsylvania and Northeast Ohio., Participants: The sample consisted of 403 families of organ donor-eligible patients who reported that someone at the hospital told them the patient was brain dead., Main Outcome Measures: Families' awareness of brain-death testing procedures, understanding of brain death, and donation decision., Results: Most families (96%) were told their family member was brain dead, but only 28.3% were able to provide a completely correct definition of brain death. No association between the definition of brain death and willingness to donate was found. Those who donated were less likely to agree with the statement that someone is dead only when the heart stops than those who did not donate. Respondents who accepted that their loved one was dead when informed the patient was brain dead were more likely to donate than those who did not consider the patient dead until mechanical support was turned off and the heart stopped.

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.