Validation of the Quality of Dying and Death Questionnaire among the Chinese populations.

OBJECTIVE: This study reports the evaluation of the original 31-item Quality of Dying and Death Questionnaire (QODD) using a sample of caregivers of recently deceased older adults in China, and the validation of a shortened version (QODD-C) derived from the original scale. METHODS: The translation was performed using a forward and back method. The full scale was tested with 212 caregivers of decedents in four regions of China. Confirmatory factor analysis tested the model fit between the full Chinese version and the original conceptual model and generated the QODD-C. The psychometric analysis was performed to evaluate the QODD-C's internal consistency, content validity, construct validity, and discriminant validity. RESULTS: A five-domain, 18-item QODD-C was identified with excellent internal consistency reliability (Cronbach's α = 0.933; split-half Pearson's value = 0.855). The QODD-C total score was significantly associated with constructs related to five domains. The caregiver's relationship with the decedent, the decedent's age at death, death reason, and death place was significantly associated with the QODD-C total score. SIGNIFICANCE OF RESULTS: The QODD-C is a valid and reliable instrument for assessing the quality of dying and death among the Chinese populations.

Beyond Just Giving Care: Exploring the Role of Culture in Chinese American Personal Care Aides' Work.

As the number of older Chinese Americans with immigration background increases, there is a growing need for Chinese American personal care aides (CA-PCAs) to assist them with aging at home by providing culturally congruent and linguistically competent service. However, little is known about how culture factors into the caregiving process and influences CA-PCAs' well-being. In this study, two focus groups were conducted with ten immigrant CA-PCAs and conventional content analysis was used to analyze the qualitative data. Seven cultural themes were identified, including guanxi (relationship), renqing (favor), mianzi/lian (face), hierarchy and authority, communication, harmony, and elder respect. By drawing attention to the idiosyncratic cultural landscape and entailed challenges faced by underrepresented CA-PCAs, the investigators corroborate the importance of cultural sensitivity for working with ethnic minority non-familial caregivers. The findings shed light on cultural factors that can be targeted by culturally sensitive direct practices, programs, and policies.

Chinese Immigrant Caregivers: Understanding Their Unmet Needs and the Co-Design of an mHealth App.

BACKGROUND: Immigrant caregivers support the aging population, yet their own needs are often neglected. Mobile technology-facilitated interventions can promote caregiver health by providing easy access to self-care materials. OBJECTIVE: This study employed a design thinking framework to examine Chinese immigrant caregivers' (CICs) unmet self-care needs and co-design an app for promoting self-care with CICs. METHODS: Nineteen semi-structured interviews were conducted in conceptual design and prototype co-design phases. FINDINGS: Participants reported unmet self-care needs influenced by psychological and social barriers, immigrant status, and caregiving tasks. They expressed the need to learn to keep healthy boundaries with the care recipient and respond to emergencies. Gaining knowledge was the main benefit that drew CICs' interest in using the self-care app. However, potential barriers to use included issues of curriculum design, technology anxiety, limited free time, and caregiving burdens. DISCUSSION: The co-design process appears to be beneficial in having participants voice both barriers and preferences.

Life review on psychospiritual outcomes among older adults with life-threatening illnesses: A systematic review and meta-analysis.

Background: At the intersection of old age and illness, older adults with life-threatening illnesses (LTI) are a group who often show resilience and seek validation of life, acceptance, and integration of past and now, even under the fear of loss, suffering, and dying evoked by life adversities. Life review has been widely conducted to help older adults enhance well-being and cope with burdens. Spirituality is an important part of an older adult' overall well-being, especially for those with LTI. However, few review studies examined the effectiveness of life review interventions on psychospiritual outcomes among this population. The aim of the study was to examine the effectiveness of life review on psychospiritual well-being among older adults with LTI. Methods: A systematic review with meta-analysis following the recommendations of the Cochrane Collaboration was conducted. Database searches included PubMed, PsycINFO, the Cochrane Library, the Campbell Library, EBSCO, CNKI, and the Airiti Library up to March 2020. Gray literature and reference lists from relevant articles were also searched and reviewed. Results: In total, 34 studies were included in the systematic review and the meta-analysis for outcomes of depression (n = 24), quality-of-life (QOL) (n = 10), anxiety (n = 5), life satisfaction (n = 3), mood (n = 3), apathy (n = 2), and general well-being (n = 2). Other psychospiritual outcome measures included spirituality, self-esteem, meaning in life, hope, and some multi-dimensional instruments. The studies greatly varied in program design, content, format, length, and more. Although with high heterogeneity, meta-analysis results demonstrated standardized mean differences in favor of life review in decreasing depression, anxiety, negative mood, and increasing positive mood and QOL compared with the control group. Conclusion: This review calls for including more psycho-spiritual well-being measures among interventions for older adults with LTI, as well as studies with rigorous designs in future research.

An Evaluation of Self-Care and Caregiving Training Curriculum Content for Chinese Immigrant Caregivers: A Participatory Design Approach.

Immigrant caregivers face unique difficulties in self-care and caregiving practices in the United States. Our aim was to conduct an evaluation of the content of a training curriculum app designed for Chinese immigrant caregivers based on the Body-Mind-Spirit model. An app prototype was developed, and a sample content was examined by prospective users accessing it on their smartphones. Using a participatory design approach, 22 in-depth interviews were conducted with Chinese immigrant caregivers in Los Angeles in 2019, and feedback for spirituality content was sought from an independent expert. Caregivers provided feedback for three self-care categories-body, mind, and community resources-and two caregiving content categories-knowledge and skills, and community resources. From this feedback, five areas for designing training curriculum content emerged: caregiving stress, lifestyle and health behavior change, access to community resources, death education and end-of-life care, and spiritual care.

Effectiveness of Dance-Based Interventions on Depression for Persons With MCI and Dementia: A Systematic Review and Meta-Analysis.

Background: There is a growing need to offer appropriate services to persons with mild cognitive impairment (MCI) and dementia who are faced with depression and anxiety distresses beyond traditional pharmacological treatment. Dance-based interventions as multi-dimensional interventions address persons' physical, emotional, social, and spiritual aspects of well-being. However, no meta-analysis of randomized controlled treatment trials (RCTs) has examined the effectiveness of dance-based interventions on depression and anxiety among persons with MCI and dementia, and the results of RCTs are inconsistent. The study aimed to examine the effectiveness of dance-based interventions on depression (a primary outcome) and anxiety (a secondary outcome) among persons with MCI and dementia. Methods: A systematic review with meta-analysis was conducted. The inclusion criteria were: population: people of all ages with MCI and dementia; intervention: dance-based interventions; control group: no treatment, usual care, or waiting list group; outcome: depression and anxiety; study design: published or unpublished RCTs. Seven electronic databases (Cochrane, PsycINFO, Web of Science, PubMed, EBSCO, CNKI, WanFang) were searched from 1970 to March 2021. Grey literature and reference lists from relevant articles were also searched and reviewed. The Cochrane "Risk of Bias" tool was used to assess study quality. RevMan 5.4 was used for meta-analysis and heterogeneity was investigated by subgroup and sensitivity analysis. GRADE was applied to assess the evidence quality of depression and anxiety outcomes. Results: Five randomized controlled trials were identified. Sample sizes ranged from 21 to 204. The risk of bias was low, except for being rated as high or unclear for most included studies in two domains: allocation concealment, blinding participants and personnel. Meta-analysis of depression outcome showed no heterogeneity (I 2 = 0%), indicating that the variation in study outcomes did not influence the interpretation of results. There were significant differences in decreasing depression in favor of dance-based interventions compared with controls [SMD = -0.42, 95% CI (-0.60, -0.23), p < 0.0001] with a small effect size (Cohen's d = 0.3669); Compared with the post-intervention data, the follow-up data indicated diminishing effects (Cohen's d = 0.1355). Dance-based interventions were more effective in reducing depression for persons with dementia than with those having MCI, and were more effective with the delivery frequency of 1 h twice a week than 35 min 2-3 times a week. Also, one included RCT study showed no significant benefit on anxiety rating scores, which demonstrated small effect sizes at 6 weeks and 12 weeks (Cohen's d = 0.1378, 0.1675, respectively). GRADE analysis indicated the evidence quality of depression was moderate, and the evidence quality of anxiety was low. Conclusions: Dance-based interventions are beneficial to alleviate depression among persons with MCI and dementia. More trials of high quality, large sample sizes are needed to gain more profound insight into dance-based interventions, such as their effects of alleviating anxiety, and the best approaches to perform dance-based interventions.

Palliative Care for the Asian American Adult Population: A Scoping Review.

BACKGROUND: The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications. METHODS: A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O'Malley's methodological framework was followed for scoping reviews. RESULTS: Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs. CONCLUSION: A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.

Care Me Too, a Mobile App for Engaging Chinese Immigrant Caregivers in Self-Care: Qualitative Usability Study.

BACKGROUND: Caregiving and self-care are challenging for Chinese immigrants in the United States due to limited accessible support and resources. Few interventions exist to assist Chinese immigrant caregivers in better performing self-care. To address this gap in the literature, our team developed the Care Me Too app to engage Chinese immigrant caregivers in self-care and conducted a user experience test to assess its usability and acceptability. OBJECTIVE: This paper aims to report the results of the app's usability and acceptability testing with Chinese immigrant caregivers and to solicit participants' feedback of the app design and functions. METHODS: A total of 22 Mandarin-speaking Chinese caregivers participated in the study, which consisted of 2 parts: the in-lab testing and the 1-week at-home testing. In-depth face-to-face interviews and follow-up phone interviews were used to assess user experience of the app's usability and acceptability and to solicit feedback for app design and functions. Directed content analysis was used to analyze the qualitative data. RESULTS: Among the 22 participants, the average age was 60.5 (SD 8.1) years, ranging from 46 to 80 years; 17 (77%) participants were women and 14 (64%) had an associate degree or higher. Participants reported uniformly positive ratings of the usability and acceptability of the app and provided detailed suggestions for app improvement. We generated guidelines for mobile health (mHealth) app designs targeting immigrant caregivers, including weighing flexibility versus majority preferences, increasing text sizes, using colors effectively, providing engaging and playful visual designs and functions, simplifying navigation, simplifying the log-in process, improving access to and the content on the help document, designing functions to cater to the population's context, and ensuring offline access. CONCLUSIONS: The main contribution of this study is the improved understanding of Chinese caregivers' user experiences with a language-appropriate mHealth app for a population that lacks accessible caregiving and self-care resources and support. It is recommended that future researchers and app designers consider the proposed guidelines when developing mHealth apps for their population to enhance user experience and harness mHealth's value.

YouTube Videos as a Source of Palliative Care Education: A Review.

Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination. Objective: To explore the availability and characteristics of palliative care educational videos on YouTube and determine how palliative care is portrayed in these videos. Methods: Keyword search and snowball methods were used to identify palliative care videos on YouTube. A structured data collection protocol was developed to record characteristics of a video. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day. Results: A total of 833 videos were screened; 84 met criteria for analysis. The most prominent video styles were providing palliative care information (85%) and personal testimony (50%). One-third were uploaded by hospice/palliative care services or medical organizations, while another one-third by advocacy organizations. More than two-thirds mentioned "end-of-life" and 35% mentioned "hospice." Physicians most frequently appeared and served as protagonists. Protagonists were primarily female (71.0%), aged 18-64 years (81.7%), and white (90.3%). Compared with videos uploaded by health care agencies, those uploaded by advocacy organizations had 6.41 times higher odds of having more than one view per day (p = 0.002). Conclusion: Online videos may not provide accurate and appropriate information on palliative care. There is minimal ethnic diversity in terms of physician and family representation. More research is needed to determine the effectiveness of these videos in improving consumer knowledge of palliative care.