Social capital for carers of patients with advanced organ failure: a qualitative exploration of stakeholders' perspectives.

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.

Co-designing a culturally-sensitive theory-driven advance care planning game with Chinese older adults and healthcare providers.

BACKGROUND: Advance care planning can be challenging because discussing end-of-life care often has negative connotations. Gamification is a novel approach to encourage advance care planning conversations in Western culture. AIM: To co-design a game with multiple stakeholders to promote advance care planning in Chinese communities. DESIGN: A two-phase design guided by the Medical Research Council framework for developing complex interventions was adopted between May 2019 and August 2020. In phase I, a game prototype was developed based on literature review, expert consultation and end-user consultation. In Phase II, the game prototype was tested among end-users and refined according to their feedback and expertise of a multi-disciplinary team through an iterative process. SETTING/PARTICIPANTS: Experts in the field of aged care, palliative care, life education and game development and Chinese community-dwelling adults aged 60 years or older. RESULTS: A board game called 'The Five Tastes Found in a Grocery Store' was developed. The game design was shaped by Bandura's Self-efficacy theory and feedback from experts and end-users. The participants generally found the gaming experience enjoyable and appreciated the opportunity to discuss end-of-life care openly. CONCLUSIONS: This study is the first to develop an evidence-informed, theory-based, culturally sensitive game for promoting advance care planning in the Chinese community using a co-design approach.

Memory Trajectories and Disability Among Older Couples: The Mediating Role of Depressive Symptoms.

OBJECTIVES: Using a dyadic approach, this study examined the mediating effect of depressive symptoms on the longitudinal relationships between husbands' and wives' memory trajectories and their prospective disability status. METHODS: Longitudinal data from the Health and Retirement Study 2004-2018 were used. Older (aged 50+) heterosexual couples who had no limitations in the activity of daily living at the baseline (2004) were included (N = 1,310). Latent class growth analysis grouped wives and husbands into distinct memory trajectories in 2004-2014. A structural equation model examined the actor and partner effects of memory trajectories on depressive symptoms in 2016 and disability status in 2018. The mediating effect of depressive symptoms was tested. RESULTS: A total of 4 distinct memory trajectories were found: persistently high, high and slow decline, moderate and slow decline, and low and rapid decline. Only the wife's low and rapid decline memory trajectory predicted her own more depressive symptoms (ß = 0.588, 95% CI: 0.209, 0.967) and her husband's more depressive symptoms (ß = 0.326, 95% CI: 0.004, 0.648). Meanwhile, depressive symptoms had strong and significant actor effects on disability (ß = 0.046, 95% CI: = 0.036, 0.057 for wives; ß = 0.060, 95% CI: = 0.046, 0.074 for husbands). DISCUSSION: The wife's low and rapid decline trajectory was associated with her own and her husband's more depressive symptoms, which in turn increased the disability risk for both partners. Timely identification and treatment of memory decline among wives have the potential to mitigate couples' depressive symptoms and, ultimately, disability risks.

Strategies and factors to enhance active participation of family caregivers of people with dementia in psychoeducation: A scoping review.

Psychoeducation with an active participation component is effective in facilitating family caregivers of people living with dementia to learn about the disease and gain relevant caregiving skills. However, research into the best strategies to promote active participation has received little attention, and the factors hindering active participation are also unknown. Therefore, the nine-stage framework of the Joanna Briggs Institute methodology for scoping reviews was adopted to map and identify information about the active participation of family caregivers of people living with dementia in psychoeducation. The search criteria focused on identifying primary research studies and grey literature relevant to psychoeducation with active participation that had the family caregivers of community dwelling people living with dementia as the target population. Two reviewers independently screened and selected items from the literature. Content analysis was conducted to thematically synthesise strategies mentioned in 29 articles published from 2011 and 2021. Content analysis revealed six strategies that promoted active participation: (1) the involvement of interventionist and qualifications; (2) the teaching and learning methods used to conduct psychoeducation with active participation; (3) tailoring the contents and formats to the experiences, preferences, and resources of the caregivers; (4) collaborating with caregivers; (5) facilitating sharing and support between peers; and (6) providing experiential learning opportunities. Two factors hindering active caregiver participation were negative caregiver emotions and cultural taboos. This review offers ideas for evidence-based practices that can be used by health and social care providers when planning psychoeducation with active participation for the family caregivers of people living with dementia.

Effects of yoga on physical and psychological health among community-dwelling older adults: A systematic review and meta-analysis.

OBJECTIVES: To synthesise and critically appraise the quality of existing evidence about the effects of yoga on physical and psychological outcomes among older adults. DESIGN: A systematic review and meta-analysis. PARTICIPANTS: Participants aged 60 and above. MEASUREMENTS: Nine English and two Chinese electronic bibliographic databases, including MEDLINE OvidSP, PsycINFO, AMED, EMBASE, Global Health, PubMed, Scopus, CINAHL, Cochrane Library, Hyread and WanFang databases, were searched. Randomised controlled trials (RCT) of yoga on physical and psychological outcomes among older adults were included. Meta-analysis was conducted for outcomes studied in three or more studies, otherwise narrative synthesis was performed. RESULTS: Fifteen studies were included for review. The results of meta-analysis after sensitivity analysis showed that yoga significantly improved balance (SMD = 0.81, 95% CI: 0.48-1.14, p < .001, II2 = 59%), flexibility (SMD = 0.38, 95% CI: 0.07-0.68, p = .020, II2 34%), muscle strength (SMD = 0.49, 95% CI: 0.18-0.79, p = .002, I2 43%) and depressive symptoms (SMD = 0.50, 95% CI = 0.09-0.91, p = .01, I2 0%). There was insufficient data for meta-analysis on gait and other psychological outcomes. Narrative synthesis suggested that yoga has positive effects on reducing anxiety, but its effects on improving gait and reducing stress among older adults were inconclusive. CONCLUSION: The results of this review supported the beneficial effects of yoga on physical outcomes among older adults, but the heterogeneity across studies was relatively high. Evidence related to the effect on psychological outcomes was limited.

Loneliness at end-of-life: A scoping review.

AIMS AND OBJECTIVES: To map and synthesise the literature on loneliness at end-of-life and identify key knowledge gaps in loneliness research. BACKGROUND: Declined health conditions, reduced social engagement, loss of social roles, and fear of death may lead to loneliness at end-of-life. However, systematic information about loneliness at end-of-life is scant. METHODS: This scoping review followed the methodology proposed by Arksey and O'Malley. Nine electronic databases were searched from January 2001 to July 2022. Studies about loneliness at end-of-life were included. Two review authors independently screened and selected relevant studies and performed the data charting. The PAGER framework was employed to collate, summarise and report the results. The PRISMA-ScR checklist was included. RESULTS: A total of 23 studies were included in this review (12 qualitative, 10 quantitative, and one mixed-methods design). There was not reliable data about the prevalence of loneliness among adults at end-of-life internationally. Three or 20-item UCLA loneliness scale was frequently used to measure loneliness. Factors predisposed adults at end-of-life to loneliness included passive and active withdrawal from social networks, inability to share emotions and to be understood, and inadequate support on spirituality. Four strategies were identified to alleviate loneliness, yet none have been substantiated in clinical trials. Interventions facilitating spirituality, social interactions and connectedness seem effective in alleviating loneliness. CONCLUSIONS: This is the first scoping review on loneliness at end-of-life, synthesising evidence from qualitative, quantitative, and mixed-methods studies. Loneliness among adults at end-of-life is under-investigated and there is a prominent need to address existential loneliness at end-of-life. RELEVANCE TO CLINICAL PRACTICE: All nurses should proactively assess loneliness or perceived social isolation for clients with life-limiting conditions, regardless of social networks. Collaborative efforts (e.g., medical-social collaborations) to promote self-worthiness, social engagement and connectedness with significant others and social networks are needed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.

A serious game for engaging older adults in end-of-life care discussion: A mixed method study.

OBJECTIVE: To examine the acceptability of a board game newly developed through a co-design process for promoting end-of-life care discussion among Chinese older adults. METHODS: A multi-centre mixed method study, including a one group pre-test post-test study and focus group interviews, was conducted. Thirty older adults participated in a one-hour game session in a small group format. Acceptability was assessed by attrition rate and satisfaction with the game. Participants' experiences with the game were explored qualitatively. Within-subject changes in self-efficacy and readiness for advance care planning (ACP) behaviours were also examined. RESULTS: The players generally had positive experiences with the game, giving a low attrition rate. A significantly higher level of self-efficacy in sharing end-of-life care preferences with surrogates was reported after the game session (p = 0.008). There was a slight increase in the proportion of players indicated that they would complete ACP behaviours in the coming months immediately after the intervention. CONCLUSION: A serious game is acceptable by Chinese older adults to raise discussions regarding end-of-life matters. PRACTICE IMPLICATIONS: A game can be an ice-breaking tool to increase self-efficacy towards communicating end-of-life care preferences with surrogates, but follow-up support is needed to facilitate the uptake of ACP behaviours.

A dyadic advance care planning intervention for people with early-stage dementia and their family caregivers in a community care setting: a feasibility trial.

BACKGROUND: Advance care planning (ACP) is highly relevant for people with early-stage dementia to communicate their care preferences for serious illness conditions with their family caregivers before they become mentally incapacitated. METHODS: A multi-centre, quasi-experimental study was conducted to test the feasibility and acceptability of a theory-guided, dyadic ACP intervention ('Have a Say' programme) among participants with early-stage dementia-family caregiver dyads. The feasibility of the trial design, intervention procedures, subject recruitment and retention, and study instruments were assessed. Study outcomes were measured at baseline (T0), immediately after the intervention (T1), and at 1 month (T2) and 3 months post-intervention (T3). Acceptability of the intervention was determined by the satisfaction score, completion rate and qualitative interviews as process evaluation with a purposive sample of participants and ACP facilitators. Generalised estimating equations were performed to examine differential changes between groups over time, with covariates adjusted. RESULTS: Subject recruitment from five elderly community centres yielded a recruitment rate of 60% and resulted in 36 client-caregiver dyads. The intervention was acceptable to the dyads, with a mean satisfaction score of 4.4 out of 5 and completion rate of 94.4%. The attrition rates at T1, T2, and T3 were 8.3%, 13.9%, and 19.4%, respectively. The intervention group reported a significantly greater improvement in the readiness for ACP at T1, self-efficacy for ACP at T3, and dyadic concordance on end-of-life care preferences at all time points than the control group, but not on depressive symptoms. Family caregivers in the intervention group reported a significantly higher caregiving burden at T2 than the control group. The qualitative findings revealed that triadic involvement of and trusting relationships among the dyads and ACP facilitators, and documentation of clients' views are the programme strengths, while the structured format and discussion about medical issues posed implementation challenges. CONCLUSIONS: This ACP intervention and trial design were feasible and acceptable to the dyads. Several refinements were identified, including adding a nurse-led group-based session for information giving, allowing flexibility in arrangement, and adding measure of ACP engagement of family caregivers. A rigorous trial to test the effects of the ACP intervention is warranted. TRIAL REGISTRATION: Retrospectively registered on 14/08/2020 at clinicaltrials.gov (Identifier: NCT04513106).

Effects of non-pharmacological interventions on psychological outcomes among older people with frailty: A systematic review and meta-analysis.

BACKGROUND: Older people with frailty are more likely to experience negative psychological well-being, depressive symptoms, anxiety, and stress. Deterioration of psychological outcomes, in turn, further aggravates the frailty status among this vulnerable population. Considering the undesirable effects of polypharmacy on older people, the use of non-pharmacological intervention has attracted increasing attention. However, the effects of non-pharmacological interventions on psychological outcomes are not clear. AIMS: This review aims to systematically identify and synthesise evidence to examine the effectiveness of non-pharmacological interventions on psychological outcomes among older people with frailty. METHODS: Eight electronic databases, including PubMed, MEDLINE, EMBASE, CINAHL, APA PsycInfo, Cochrane Library, CNKI and WANFANG were searched from inception to 14 November 2022. Randomised controlled trials and clinical controlled trials of non-pharmacological interventions on psychological outcomes in older people with frailty were included. The quality of the included studies was assessed using The Cochrane Risk of Bias Tool v2. Meta-analysis was performed using the RevMan5.3. The certainty of the evidence was evaluated by GRADE approach. RESULTS: A total of 4726 articles were initially identified and screened for title and abstract. Eventually, 13 articles from 11 studies were included in this review. The results of the overall risk of bias indicated that four studies had low risk; five studies had some concerns, and two studies had high risk. Four types of intervention were identified, including physical exercise (n = 3), complementary and alternative medicine (music therapy = 1, acupressure = 1), case management (n = 5), and advance care planning (n = 1). The pooled analysis showed that group-based physical exercise had significant beneficial effects on depressive symptoms (SMD: -0.46, 95% CI: -0.81 to -0.10, p = .01; low certainty). There is no difference between the effects of case management and usual care on depressive symptoms (SMD: 0.02, 95% CI: -0.14 to 0.19, p = .79; high certainty). Narrative synthesis of evidence suggested the effects of complementary and alternative medicine on improving depressive symptoms and general mental status. CONCLUSIONS: Psychological outcomes in older people with frailty are understudied. Group-based physical exercise could be a strategy to reduce depressive symptoms among older people with frailty. There is limited evidence showing the effects of complementary and alternative medicine on improving psychological outcomes. More rigorous trials are needed to examine the effects of non-pharmacological interventions on psychological outcomes among older people with frailty. REGISTRATION: (PROSPERO): CRD42022303370.

A Video Decision Aid for Advance Care Planning Among Community-Dwelling Older Chinese Adults: A Cluster Randomized Controlled Trial.

Background: Health literacy is the foundation for discussing and reaching decisions regarding future care in advance care planning (ACP). Objectives: This cluster randomized controlled trial compared the effects of a video decision aid with those of verbal narratives accompanied by photos in preparing community-dwelling Chinese adults for ACP. Setting and Subjects: Adults aged 60 years or older who were capable of communicating and decision making (n = 182). Methods: The study was conducted in eight community centers in Hong Kong from April to December 2018. The primary outcome was readiness for ACP. Secondary outcomes included knowledge of and decisional conflict regarding end-of-life care. Results: In both groups, significant improvements were noted in the readiness to discuss (ß = 0.52, 95% confidence interval [CI] = 0.18 to 0.87, p = 0.003) and document (ß = 0.52, 95% CI = 0.13 to 0.90, p = 0.008) end-of-life care preferences and knowledge (ß = 0.85, 95% CI = 0.50 to 1.21, p < 0.001); in addition, decisional conflicts significantly decreased (ß = 0.87, 95% CI = 0.49 to 1.25, p < 0.001). The video group demonstrated a greater improvement than the verbal group only in the knowledge score (ß = 0.55, 95% CI = 0.08 to 1.02, p = 0.023). Conclusions: The findings showed that both video decision aids and verbal narratives accompanied by photos are effective ways to prepare older Chinese adults for ACP, although the video format was more effective for knowledge transfer. More work is needed to evaluate the sustained effects of these education interventions. Clinical Trial: This trial was registered at ISRCTN14628950.

Effects of Health Coaching on Cardiometabolic Health in Middle-Aged Adults: A Systematic Review and Meta-analysis.

OBJECTIVE: To appraise and synthesize evidence on the effects of health coaching as the primary intervention on cardiometabolic health among middle-aged adults. DATA SOURCE: Six electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, PubMed, and the Cochrane library) were searched from inception until July 2021. STUDY INCLUSION AND EXCLUSION CRITERIA: Randomized controlled trials and controlled clinical trials published in English, reporting health coaching aimed to promote behavioral changes for improving cardiometabolic health among middle-aged adults were included. Studies on health coaching as secondary intervention were excluded. DATA EXTRACTION: Two reviewers selected the articles, appraised the study quality, and extracted data independently. All kinds of outcomes related to cardiometabolic health, including health behaviors, psychological and physiological outcomes, were included. DATA SYNTHESIS: Meta-analysis was performed if three or more studies reported the same outcomes. Narrative synthesis was performed if pooling of data for meta-analysis was not feasible. RESULTS: Eight studies were reviewed. Most studies involved substantial risk of bias. The majority of the participants were women (99.1%). Meta-analysis showed a small but significant effect of health coaching on increasing physical activity (SMD = .34, 95% CI = .08-.60, p = .01, I2 = 0%); however, its effect on perceived barriers to physical activity and depressive symptoms was nonsignificant. Narrative synthesis yielded inconsistent results on diet, smoking, anxiety, goal achievement and self-efficacy for behavioral change, physiological outcomes, and metabolic syndrome severity, and nonsignificant effects on alcohol consumption, sleep quality, perceived benefits of physical activities, and cardiovascular symptoms. CONCLUSIONS: Health coaching has significant effects on increasing physical activity among middle-aged adults; however, its effects on health behaviors and risk factors related to cardiometabolic health are inconclusive. Further efforts are warranted to examine how health coaching can improve cardiometabolic health among middle-aged adults.

Exploring social capital for family caregivers of patients with chronic organ failure: study protocol for a concept mapping study.

INTRODUCTION: Many family caregivers experience significant burdens, especially those who take care of patients with chronic organ failure. Although the social welfare system offers some material assistance, a more sustainable approach to supporting caregivers is warranted. This study aims to explore the social capital (ie, the internal strengths of a community that facilitate different social roles) available for these family caregivers. METHODS AND ANALYSIS: A participatory design based on Trochim's concept mapping framework will be used in this study. A total of 119 participants, including patients, family caregivers, professionals and other community members, will be recruited from the community. The study will be divided into three phases. In Phase I, qualitative methods will be used to prepare and generate statements. Participants will be asked to share their views on social capital for family caregivers through interviews. In Phase II, quantitative methods will be used to arrange these statements into a concept map, and participants will be asked to complete a questionnaire to prioritise the statements. Statistical methods will be used to create a map based on the responses. In Phase III, the concept map will be used to formulate action plans. The findings will be presented to the public to produce recommendations for social policy. ETHICS AND DISSEMINATION: This study was approved by The Chinese University of Hong Kong Survey and Behavioural Research Ethics Committee (Reference No.: SBRE-20-714). Informed consent will be obtained from all participants. This study will reveal which forms of social capital can be mobilised to support family caregivers of patients with chronic organ failure. Recommendations on policies to improve the caregiving experience, strengthen social capital and enhance social care will be produced. Findings will be disseminated through academic conferences and journals, as well as local media to create a greater social impact. TRIAL REGISTRATION NUMBER: ChiCTR2100044171.

Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study.

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage.

Community palliative care services on addressing physical and psychosocial needs in people with advanced illness: a prospective cohort study.

BACKGROUND: The integration of palliative care into primary health care has been advocated to improve its accessibility and the continuity of care. Recent studies on such an approach have mainly focused on health care cost and utilization. This study aims to evaluate the effects of a community interdisciplinary palliative care program on the symptom experience of patients with advanced disease. METHODS: A prospective cohort study was conducted. The Integrated Palliative Care Outcome Scale was used for monthly assessment to monitor their condition. Wilcoxon signed-rank test was used to examine changes in symptom experience across time. RESULTS: Forty-eight patients with a predominance of cancer diagnoses, enrolled in the program. They reported anxiety, hardly feeling at peace, and neither receiving information as wanted nor being able to share their feeling with family/friends as more overwhelming than physical symptoms. Improvements in emotional symptoms was statistically significant at 1-month follow up (p < 0.001). Improvements in communication/practical issues were also significant at the 1-month (p < 0.001) and 2-month (p = 0.005) follow-up. However, changes in symptom experiences in the subsequent months were not apparent. CONCLUSIONS: This study reveals the overwhelming emotional, communication and information needs among patients with advanced diseases and provides empirical evidence of the community palliative care program in short term. Further work is needed to strengthen the medical-social partnership to support care in place albeit health deterioration.

Dementia care education interventions on healthcare providers' outcomes in the nursing home setting: A systematic review.

Given the increasing prevalence of people with dementia in long-term care, various educational interventions have been developed to enhance the dementia care competence of healthcare providers. The study aim was to appraise the evidence of the effects of dementia care educational programs on improving the preparedness of nursing home staff. Articles on dementia care education interventions for nursing home staff were searched from eight databases. The primary outcomes were staff knowledge, attitude, competence, and sense of competence or self-efficacy related to dementia. The secondary outcomes were psychological outcomes, including burnout, caregiving stress, well-being, and job satisfaction. The quality of evidence was appraised using the Joanna Briggs Institute Critical Appraisal tool. Out of the 3269 articles identified, 19 randomized controlled trials comprising 3947 participants from eight countries were included. The methodological quality of included studies was fair. A significant improvement in staff knowledge regarding dementia was reported. The intervention effects on attitudes and competence were insignificant, and the effects on the sense of competence or self-efficacy related to dementia care were inconsistent. The effects on psychological outcomes seem limited because few significant changes were found. Multiple teaching methods, peer support, qualified trainers, and post-training support were effective components in designing the educational interventions. However, given the variations in content and dose and the methodological limitations of the included studies, the effects of educational programs were inconclusive. The findings highlight the necessity of high-quality studies on dementia-care educational interventions, especially in other cultures than Western countries, such as in Asia.

Gamification for promoting advance care planning: A mixed-method systematic review and meta-analysis.

BACKGROUND: Gamification has been adopted in the health care field for broaching sensitive topics and increasing motivation for behavior changes. Games developed to stimulate discussion surrounding end-of-life issues, and thereby promoting advance care planning also emerged. AIM: The aim is to integrate the quantitative evidence and qualitative evidence to understand the effectiveness of and experience with games for advance care planning. DESIGN: A mixed-methods systematic review and meta-analysis (PROSPERO ID: CRD42020163312) was undertaken. Joanna Briggs Institute Critical Appraisal tools were used for quality appraisal. Data were synthesized and pooled for meta-analysis or meta-aggregation when appropriate. DATA SOURCES: We searched MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane Library, WanFang, China Knowledge Resource Integrated Database, and Chinese Biomedical Literature Database from the inception of the databases for qualitative, quantitative, and mixed-method studies. RESULTS: Eleven articles of ten studies were included, six of which were feasibility studies. The quality of the quantitative component of most included studies (7/8) was rated as low, and the qualitative component of most included studies (7/8) was rated as moderate. The meta-analysis showed that games for advance care planning are effective to increase self-efficacy, readiness, knowledge, and process of advance care planning behaviors. The meta-aggregation showed that games for advance care planning are highly acceptable and the participants perceived the game experience as fun and enjoyable. CONCLUSIONS: Advance care planning games seem to be a promising intervention for increasing the uptake of advance care planning behaviors. Well-designed randomized controlled trials evaluating the effectiveness of games for advance care planning are needed in the future.

Effects of a culturally adapted group based Montessori based activities on engagement and affect in Chinese older people with dementia: a randomized controlled trial.

BACKGROUND: The Montessori Method underpinned by the principle of person-centered care has been widely adopted to design activities for people with dementia. However, the methodological quality of the existing evidence is fair. The objectives of this study are to examine the feasibility and effects of a culturally adapted group-based Montessori Method for Dementia program in Chinese community on engagement and affect in community-dwelling people with dementia. METHODS: This was a two-arm randomized controlled trial. People who were aged 60 years or over and with mild to moderate dementia were recruited and randomly assigned to the intervention group to receive Montessori-based activities or the comparison group to receive conventional group activities over eight weeks. The attendance rates were recorded for evaluating the feasibility. The Menorah Park Engagement Scale and the Apparent Affect Rating Scale were used to assess the engagement and affect during the activities based on observations. Generalized Estimating Equation model was used to examine the intervention effect on the outcomes across the sessions. RESULTS: A total of 108 people with dementia were recruited. The average attendance rate of the intervention group (81.5%) was higher than that of the comparison group (76.3%). There was a significant time-by-group intervention effect on constructive engagement in the first 10 minutes of the sessions (Wald χ2 = 15.21-19.93, ps = 0.006-0.033), as well as on pleasure (Wald χ2 = 25.37-25.73, ps ≤ 0.001) and interest (Wald χ2 = 19.14-21.11, ps = 0.004-0.008) in the first and the middle 10 minutes of the sessions, adjusted for cognitive functioning. CONCLUSIONS: This study provide evidence that Montessori-based group activities adapted to the local cultural context could effectively engage community-dwelling Chinese older people with mild to moderate dementia in social interactions and meaningful activities and significantly increase their positive affect. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04352387. Registered 20 April 2020. Retrospectively registered.

Symptom Burden and Unmet Support Needs of Patients With Parkinson's Disease: A Cross-Sectional Study in Asia-Pacific Regions.

OBJECTIVES: Support care is rarely assessed and offered to people with long-term neurologic conditions, particularly Parkinson's disease. This study aimed to assess the symptom burden and unmet support care needs in people with mild to severe Parkinson's disease. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: Patients with Parkinson's disease were recruited from neurologic outpatient clinics from 3 East and Southeast Asian regions, including Hong Kong, Taiwan, and Thailand. METHODS: A standardized set of questionnaires assessing unmet care needs [Palliative care Outcome Scale (POS)], disease-specific symptom burden (POS-Symptoms-Parkinson's Disease), generic health-related quality of life (HRQOL) (EQ-5D-3L), and sociodemographic and clinical background. RESULTS: Completed questionnaires (n = 186) were collected from 64 Hong Kong Chinese, 64 Taiwanese, and 58 Thai patients. Their mean age was 67.23 ± 8.07, 54% were female, and 80% had mild-to-moderate disease. Their mean POS score was 10.48 ± 6.38, indicating moderate unmet support needs. Two-thirds of the participants rated constipation, fatigue, leg problem, and daytime somnolence as the most prevalent and burdensome symptoms. Patients from Hong Kong and Taiwan prioritized psychosocial and spiritual support, whereas Thai patients prioritized physical needs and emotional concerns. Multivariate adjustment for demographics and clinical characteristics showed that high psychological, spiritual, and practical burdens are associated with young age, male gender, and advanced disease stages. CONCLUSIONS AND IMPLICATIONS: Patients experience significant symptom burden and moderate unmet support needs at the early to middle stage of Parkinson's disease. Routine assessment of changes in symptom burden should start early. The timely referral of support care services should provide appropriate psychospiritual and practical support in addition to motor training. Planning for support care services should consider cultural and health service contexts.