Caregiving Strain Mediates the Relationship Between Terminally Ill Patient's Physical Symptoms and Their Family Caregivers' Wellbeing: A Multicentered Longitudinal Study.

Objectives: Research considered patient outcomes primarily over caregivers in end-of-life care settings. The importance of family caregivers (FCs) in end-of-life care draws growing awareness, evidenced by an increasing number of evaluations of caregiver-targeted interventions. Little is known of FCs' collateral benefits in patient-oriented home-based end-of-life care. The study aims to investigate FC outcomes and change mechanisms in patient-oriented care. Methods: A pre-post-test study. We recruited FCs whose patients with a life expectancy ≤ 6 months enrolled in home-based end-of-life care provided by service organizations in Hong Kong. Patients' symptoms, dimensions of caregiving strain (ie, perception of caregiving, empathetic strain, adjustment demands), and aspects of FCs' wellbeing (ie, perceived health, positive mood, life satisfaction, spiritual well-being) were measured at baseline (T0) and 3 months later (T1). Results: Of the 345 FCs at T0, 113 provided T1 measures. Three months after the service commenced, FCs' caregiving strain significantly reduced, and their positive mood improved. Alleviation of the patient's physical symptoms predicted FC better outcomes, including the perception of caregiving, empathetic strain, and wellbeing. Changes in perception of caregiving mediated the effects of changes in patients' physical symptoms on FCs' changes in life satisfaction and spiritual wellbeing. Changes in empathetic strain mediated the changes between patient's physical symptoms and FCs' positive mood. Conclusions: Collateral benefits of patient-oriented home-based end-of-life care were encouraging for FCs. Patient's physical symptom management matters to FCs' caregiving strain and wellbeing. The active ingredients modifying FCs' perception of caregiving and addressing empathetic strain may amplify their benefits in wellbeing.

The Physical and Psychosocial Outcomes of a Psychosocial Home-Based end-of-Life Care Intervention in Hong Kong.

OBJECTIVE: Living the final days of life being cared for at home is a preference expressed by many. The data on the effectiveness of home-based end-of-life care (EoLC) intervention to improve the holistic conditions of terminally ill patients are scanty. This study sought to evaluate a psychosocial home-based EoLC intervention for terminally ill patients in Hong Kong. METHODS: A prospective cohort study was conducted, applying the Integrated Palliative Care Outcome Scale (IPOS) at 3 timepoints (service intake, 1-month, and 3-months after enrollment). A total of 485 eligible, consenting terminally ill people (mean age = 75.48, SD = 11.39) were enrolled, with 40.21% (n = 195) providing data at all 3 timepoints for this study. RESULTS: Decreasing symptom severity scores were observed for all IPOS psychosocial symptoms, and most physical symptoms, over the 3 timepoints. Improvements in depression and practical concerns had the highest omnibus time effects (F > 31.92, P < .01) and T0 to T2 paired comparison effects (Cohen's d > 0.54, P < .01). Physical symptoms of weakness/lack of energy, poor mobility, and poor appetite also showed significant improvements at T1 and T2 (Cohen's d: 0.22-0.46, P < .05). Bivariate regression analyses showed that improvements in anxiety, depression, and family anxiety were associated with improvements in physical symptoms of pain, shortness of breath, weakness/lack of energy, nausea, poor appetite, and poor mobility. Patients' demographic and clinical characteristics were not associated with changes in symptoms. CONCLUSIONS: The psychosocial home-based EoLC intervention effectively improved the psychosocial and physical status of terminally ill patients, irrespective of their clinical characteristics or demographics.

Degree of personalisation in tailored activities and its effect on behavioural and psychological symptoms and quality of life among people with dementia: a systematic review and meta-analysis.

OBJECTIVES: To understand and assess the degree of personalisation of tailored activities for people with dementia (PWD); and to estimate the magnitude of the effects of levels of personalisation on reducing behavioural and psychological symptoms of dementia (BPSD), improving quality of life (QoL) and level of engagement. DESIGN: Systematic review with meta-analysis. DATA SOURCES: ProQuest, PubMed, Ovid, Cochrane Library, Web of Science and CINAHL were searched from the start of indexing to May 2020. ELIGIBILITY CRITERIA: We included randomised controlled trials and quasi-experimental studies assessing the effects of tailored activities for people aged 60 years or older with dementia or cognitive impairment on the outcomes of BPSD, QoL, depression and level of engagement with control groups. DATA EXTRACTION AND SYNTHESIS: Two researchers screened studies, extracted data and assessed risks of bias. A rating scheme to assess the degree of personalisation of tailored activities was developed to classify tailored activities into high/medium/low groups. Effect sizes were expressed using standardised mean differences at 95% Confidence Interval (CI). Subgroup analyses were conducted to assess whether the degree of personalisation of tailored activities affected outcomes of interest. RESULTS: Thirty-five studies covering 2390 participants from 16 countries/regions were identified. Studies with a high-level of personalisation interventions (n=8) had a significant and moderate effect on reducing BPSD (standardised mean differences, SMD=-0.52, p<0.05), followed by medium (n=6; SMD=-0.38, p=0.071) and low-level personalisation interventions (n=6; SMD=-0.15, p=0.076). Tailored activities with a high-level of personalisation had a moderate effect size on improving QoL (n=5; SMD=0.52, p<0.05), followed by a medium level (n=3; SMD=0.41, p<0.05) of personalisation. CONCLUSIONS: To develop high-level tailored activities to reduce BPSD and improve QoL among PWD, we recommend applying comprehensive assessments to identify and address two or more PWD characteristics in designed tailored activities and allow modification of interventions to respond to changing PWD needs/circumstances. PROSPERO REGISTRATION NUMBER: CRD42020168556.

Consuming Information Related to COVID-19 on Social Media Among Older Adults and Its Association With Anxiety, Social Trust in Information, and COVID-Safe Behaviors: Cross-sectional Telephone Survey.

BACKGROUND: COVID-19-related information on social media is overabundant and sometimes questionable, resulting in an "infodemic" during the pandemic. While previous studies suggest social media usage increases the risk of developing anxiety symptoms, how induced anxiety affects attitudes and behaviors is less discussed, let alone during a global pandemic. Little is known about the relationship between older adults using social media during a pandemic and their anxiety, their attitudes toward social trust in information, and behaviors to avoid contracting COVID-19. OBJECTIVE: The goal of this study was to investigate the associations between using social media for COVID-19-related information and anxiety symptoms as well as the mediation effect of anxiety symptoms on social trust in information and COVID-safe behaviors among older adults. METHODS: A cross-sectional telephone survey was conducted in Hong Kong between May and August 2020. A rapid warm-call protocol was developed to train social workers and volunteers from participant nongovernmental organizations to conduct the telephone surveys. Questions related to COVID-safe behaviors, social trust in information, social media use, anxiety and depressive symptoms, and sociodemographic information were asked. The number of confirmed COVID-19 cases at the community level was used to account for the risk of contracting COVID-19. Ordinary least squares regressions examined the associations between social media use and anxiety symptoms, and how they were associated with social trust in information and COVID-safe behaviors. Structural equation modeling further mapped out these relationships to identify the mediation effects of anxiety symptoms. RESULTS: This study collected information regarding 3421 adults aged 60 years and older. Use of social media for COVID-19-related information was associated with more anxiety symptoms and lower social trust in information but had no significant relationship with COVID-safe behaviors. Anxiety symptoms predicted lower social trust in information and higher COVID-safe behaviors. Lower social trust in information was predicted by using social media for COVID-19 information, mediated by anxiety symptoms, while no mediation effect was found for COVID-safe behaviors. CONCLUSIONS: Older adults who rely on social media for COVID-19-related information exhibited more anxiety symptoms, while showing mixed effects on attitudes and behaviors. Social trust in information may be challenged by unverified and contradictory information online. The negligible impact on COVID-safe behaviors suggested that social media may have caused more confusion than consolidating a consistent effort against the pandemic. Media literacy education is recommended to promote critical evaluation of COVID-19-related information and responsible sharing among older adults.

Cultural adaptation of cognitive stimulation therapy (CST) for Chinese people with dementia: multicentre pilot study.

OBJECTIVE: Ageing of the Chinese population will drive a continued surge in dementia prevalence. Empirically tested non-pharmacological interventions developed in western cultures may be implemented in Chinese. Cognitive Stimulation Therapy (CST) that originated in the UK has proven benefits on cognition and quality of life in people with dementia. We investigated the feasibility and cultural appropriateness of CST in Hong Kong Chinese (CST-HK). METHODS: Mixed methods research was conducted following the formative method for adapting psychotherapy. A culturally adapted CST-HK, developed involving multidisciplinary stakeholders, was tested in a pilot multicentre study in people with mild dementia (n = 30) receiving community or residential care. Changes in cognition and quality of life were measured. Opinions from family caregivers and group facilitators (n = 25) were collected through focus groups and in-depth interviews for understanding the appropriateness of CST-HK. Feasibility was explored. RESULTS: After receiving CST-HK, 54% of participants achieved outcome of no cognitive deterioration, and 23% showed clinically meaningful improvement. Family caregivers and group facilitators expressed good acceptance of CST, with a low attrition (13%) and high attendance rate of CST-HK sessions (92%). Key cultural issues identified are (i) less active opinion sharing in group discussions due to conservatism/cautiousness and (ii) preference of practical activities with reward/recognition over pure discussion due to pragmatism. CONCLUSIONS: The CST-HK is feasible and culturally appropriate in Hong Kong Chinese. Further amendments can be made to ensure language use and enjoyment, with potential implications on effectiveness. We have provided a systematically developed, culturally adapted protocol for larger-scale implementation and research in Chinese populations. Copyright © 2017 John Wiley & Sons, Ltd.