Carol Estwing Ferrans

Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.

This study was designed to evaluate the psychometric properties of the newly completed Japanese translation of the Ferrans and Powers Quality of Life Index Cancer Version III (QLI). Using a cross‐sectional descriptive design, 136 ambulatory patients with gastrointestinal cancer (55 receiving chemotherapy, 76 with stable health status after treatment, and five status not known) completed a questionnaire at a one‐time point, and 26 patients (stable health status) completed the questionnaire again 2 weeks later. Internal consistency reliability was supported by Cronbach's α of .96 for the total scale, with subscales ranging from .83 to .93. A test–retest correlation of 0.76 (total scale) provided evidence of stability reliability over a 2‐week period, with subscale retest correlations ranging from 0.70 to 0.83. Confirmatory factor analysis showed the same four domains for the Japanese translation as the original QLI, supporting construct validity. We also assessed construct validity by examining the relationships between the Japanese QLI and six other concepts known to be related to the quality of life. As hypothesized, all correlations were moderate and in the expected direction (pain −0.39, anxiety −0.54, depression −0.63, stress −0.51, pain interfering with functioning −0.52, and general health 0.62). This evidence of the reliability and validity of the Japanese translation of the QLI supports its use in research and clinical practice to evaluate the impact of cancer and treatment. This new translation can be used to assess the patient's perspective of their quality of life, both within Japan and in cross‐cultural studies with the QLI in other languages.

This study examined factors influencing cultural beliefs associated with later-stage detection of breast cancer and determined what factors influence those cultural beliefs in Vietnamese women residing in a rural Vietnamese community. A cross-sectional survey was conducted with 289 women aged 20–64 years from 12 villages using a self-administered structured questionnaire. Cultural beliefs were measured with a 13-item cultural beliefs scale consisting of four domains—characteristics of breast lumps, self-help techniques, faith-based beliefs, and futility of treatment. Data were collected in February 2017 and analyzed using chi-square tests, nonparametric tests, Fisher’s exact tests, and multiple linear regression analyses with SPSS/WIN 24.0 statistical software. Although the total score was relatively low (3.4 out of 13), cultural beliefs that could contribute to later-stage breast cancer were identified. Younger women (β = .15, p = .016) and women with a lower income (β = .21, p < .001) held more erroneous cultural beliefs as compared to their counterparts. Most women believed they would not get breast cancer if they took care of themselves. More than one-third held cultural beliefs about breast lumps, thinking they would need to be painful and/or actively growing to be breast cancer. The results support the urgent need for education concerning breast cancer health promotion, including breast cancer assessment as well as guidance on evidence-based and up-to-date detection measures to change rural Vietnamese women’s cultural beliefs.

Predictors of trust in healthcare providers and the healthcare system have never been studied in Korean Americans (KA) despite the fact that trust plays an important role in health behaviors. The purpose of this study is to examine factors influencing trust in the healthcare system and providers among KA women. Data were collected in 196 KA women examining the effects of perceived discrimination and trust on breast cancer screening in the Chicago metropolitan area. Path analysis was used to identify factors influencing trust in the healthcare system and providers. Acculturation was positively related to trust in healthcare providers (β = .15, p =. 002), and discrimination in the healthcare system was inversely related to trust in healthcare providers (β = −.60, p <. 001). Length of stay in the US was inversely related to distrust in the healthcare system (β = −.14, p <. 001), and discrimination in healthcare was positively related to distrust in the healthcare system (β = .60, p <. 001). Trust in healthcare providers and distrust in the healthcare system were moderately correlated (r = .51, p < .001). Higher levels of acculturation and lower levels of perceived discrimination were identified as predictors of higher levels of trust in healthcare providers. A shorter stay in the US and higher levels of discrimination were identified as predictors of higher levels of distrust in the healthcare system. Perceived discrimination is a target for interventions to enhance trust in the healthcare system, and therefore reduce healthcare disparities in KAs.

Background: Cancer patients routinely develop symptoms consistent with profound circadian disruption, which causes circadian disruption diminished quality of life. This study was initiated to determine the relationship between the severity of potentially remediable cancer-associated circadian disruption and quality of life among patients with advanced lung cancer. Methods: We concurrently investigated the relationship between the circadian rhythms of 84 advanced lung cancer patients and their quality of life outcomes as measured by the EORTC QLQ C30 and Ferrans and Powers QLI. The robustness and stability of activity/sleep circadian daily rhythms were measured by actigraphy. Fifty three of the patients in the study were starting their definitive therapy following diagnosis and thirty one patients were beginning second-line therapy. Among the patients who failed prior therapy, the median time between completing definitive therapy and baseline actigraphy was 4.3 months, (interquartile range 2.1 to 9.8 months). Results: We found that circadian disruption is universal and severe among these patients compared to non-cancer-bearing individuals. We found that each of these patient's EORTC QLQ C30 domain scores revealed a compromised capacity to perform the routine activities of daily life. The severity of several, but not all, EORTC QLQ C30 symptom items correlate strongly with the degree of individual circadian disruption. In addition, the scores of all four Ferrans/Powers QLI domains correlate strongly with the degree of circadian disruption. Although Ferrans/Powers QLI domain scores show that cancer and its treatment spared these patients' emotional and psychological health, the QLI Health/Function domain score revealed high levels of patients' dissatisfaction with their health which is much worse when circadian disruption is severe. Circadian disruption selectively affects specific Quality of Life domains, such as the Ferrans/Powers Health/Function domain, and not others, such as EORTC QLQ C30 Physical Domain. Conclusions: These data suggest the testable possibility that behavioral, hormonal and/or light-based strategies to improve circadian organization may help patients suffering from advanced lung cancer to feel and function better.

To address the question of what value is added by assessing quality of life (QOL) in symptom management trials in cancer, we used the model of Wilson and Cleary to identify what is measured by the most commonly used QOL instruments. Examples of clinical trials are presented demonstrating the contributions of these broad-based QOL instruments in terms of symptoms, functioning, general health perceptions, and overall QOL. The examples show that QOL instruments can provide valuable information about side effects and impact on other aspects of life, which would not be captured by a more narrowly focused measure of the target symptom. A better understanding is needed of the differences in what QOL instruments measure, since conclusions regarding the effectiveness of treatment may differ depending on which one is used to assess outcomes. Head-to-head comparisons of instruments within the same studies would increase precision for selecting QOL instruments for symptom management trials.

The purpose of this study was to identify factors influencing long-term adherence to aquatic exercise in older women with arthritis. Participants ( n = 72) completed an educational program on aquatic exercise and underwent follow up for 6 months. At follow-up, women who continued aquatic exercise (adherence group, n = 25) had significantly higher scores than women in the nonadherence group ( n = 47) in exercise self-efficacy ( p < 0.0001) and group cohesion based on social aspects ( p = 0.009). Both groups reported experiencing similar barriers to exercise (rho = 0.78). The findings provide insights for the development of strategies to promote long-term adherence to this type of aquatic exercise. Specifically, the findings encourage the fostering of exercise self-efficacy and social group cohesion during participation in educational programs to increase long-term exercise adherence.

Purpose: To revise the Wilson and Cleary model of health‐related quality of life (HRQoL), with suggestions for applying each of the components, and to facilitate the use of HRQoL in nursing and health care.Organizing Construct: HRQoL, based on relevant literature over the past 20 years.Methods: The original model was revised in three substantive ways: (a) indicating that biological function is influenced by characteristics of both individuals and environments; (b) deleting nonmedical factors; and (c) deleting the labels on the arrows that tend to restrict characterization of the relationships.Findings: Theoretical background is provided for each of the major components of the model, and examples of instruments to measure them, were added.Conclusions: In quality‐of‐life research, the current challenge is to devise models to clarify the elements of health‐related quality of life (HRQOL) and the causal relationships among them. This revision of Wilson and Cleary's model includes a taxonomy of the variables that often have been used to measure HRQoL. This revision should be useful in research and clinical practice.