Development and validation of a health literacy scale for family caregivers of older people with chronic illness.

BACKGROUND: Family caregivers (FCs) encounter a variety of health problems in older people with chronic illness, necessitating a certain level of health literacy to access, understand, appraise and apply health information and services. This study aimed to develop and validate a scale for measuring health literacy among FCs of older people with chronic illness. METHODS: Concept mapping was first employed to develop a conceptual model of health literacy of FCs. Scale domains were derived from the conceptual model, and item generation was performed using deductive and inductive methods. Quantitative methods, including merging scale dimensions and items, expert reviews, cognitive interviews, and item reduction analysis, were used to refine the scale. Confirmatory factor analysis was employed to validate the scale's structure. Concurrent validity, internal consistency, and test-retest reliability were also examined. RESULTS: A 20-dimension conceptual model was developed, and 60 items were generated for the scale. Expert review (content validity index > 0.85) and cognitive interview with FCs confirmed the relevance and clarity of the majority of the generated scale items. Confirmatory factor analysis with 451 FCs of older people with chronic illness supported a 5-factor structure (symptom management, daily personal care and household tasks, care coordination, communication and relationship with the care recipient, and self-care of caregivers) with 42 finalized scale items, including four levels of health literacy skills (accessing, understanding, appraising and applying health information). Concurrent validity with the European Health Literacy Questionnaire (HLS-EU-Q47) was satisfactory (r = 0.67, p < 0.01). The Cronbach's α coefficient of the scale was 0.96, with subscales ranging from 0.84 to 0.91. The two-week test-retest reliability was 0.77 (p < 0.01). CONCLUSION: This study developed a conceptual model explaining the concept and factors of health literacy among FCs of older people with chronic illness that could provide the groundwork for future studies in developing relevant evidence-based interventions. A new Health Literacy Scale-Family Caregiver (HLS-FC) with satisfactory psychometric properties was developed in this study, which can be utilized to identify caregivers with insufficient health literacy and facilitate timely interventions by healthcare professionals.

Developing a storybook package for bereaved siblings: a pilot study of the effectiveness for enhancing the perceived knowledge and confidence of health and social care professionals in Hong Kong.

A pilot randomized controlled trial was conducted to examine the effectiveness of a storybook package for enhancing the perceived knowledge and confidence of health and social care professionals in working with bereaved child siblings and their parents before and after the loss. Open-ended questions were asked to collect feedback, and thematic analyses were conducted to generate the themes. Quantitative findings provided preliminary but not strong evidence of its effectiveness, but qualitative findings showed that participants perceived their knowledge about supporting bereaved siblings and their parents was enhanced and considered the storybook package a useful tool for facilitating their practice. Participants also reflected on how real and specific the stories in the storybook should be. This study is the first step in developing an evidence-based practice tool for health and social care professionals. Future studies are required to further examine its effectiveness for practice.

Effects of a Family Caregiver-Delivered MultiSensory Cognitive Stimulation Intervention for Older People With Dementia During Coronavirus 2019: A Randomized Controlled Trial.

BACKGROUND AND OBJECTIVES: Many community dementia services such as home-visiting services and center-based activities were suspended during the coronavirus 2019 pandemic. This study investigated the efficacy of a caregiver-delivered cognitive stimulation therapy (CDCST) on people with dementia during the pandemic. RESEARCH DESIGN AND METHODS: This was a 2-arm randomized controlled trial involving 241 patient-caregiver dyads assigned to a 15-week CDCST or control group (usual care). We hypothesized that CDCST would facilitate significant improvements among people with dementia (cognition, behavioral/psychiatric symptoms, and quality of life) and their caregivers (caregiving appraisal, attitudes, and psychological well-being) at postintervention (T1) and at the 12-week follow-up (T2). Generalized estimating equations evaluated the study outcomes. RESULTS: A total of 230 dyads completed the study, with good program adherence (93%). Participants in the CDCST showed significant improvements in cognition (p < .001), behavioral and psychiatric symptoms (p =. 027), and quality of life (p =.001) at the 3-month follow-up period. Family caregivers had improved positive aspects of caregiving (p = .008; p = .049) and decreased negative attitudes toward people with dementia (p =. 013; p < .001) at both T1 and T2. There were nonsignificant changes in the caregivers' perceived burden, distress, and psychological well-being. DISCUSSION AND IMPLICATIONS: Family caregivers could be trained to provide cognitive stimulation at home for people with dementia, which could benefit both parties. CDCST could manage to improve the cognition, neuropsychiatric symptoms, and quality of life of people with dementia, while also improving caregiving appraisal and negative attitudes among family caregivers. CLINICAL TRIAL REGISTRATION NUMBER: NCT03803592.

Prevalence of and factors associated with demoralization among family caregivers of palliative care patients in Hong Kong.

OBJECTIVES: This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers' support needs between high and low levels of demoralization groups. METHODS: Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers' support needs, and demographic information. RESULTS: The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers' needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative's illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving. SIGNIFICANCE OF RESULTS: This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.

Prevalence and factors associated with demoralization in palliative care patients: A cross-sectional study from Hong Kong.

OBJECTIVES: Although demoralization is common among palliative care patients, it has not yet been examined empirically in the Hong Kong Chinese context. This study aims to examine (1) the prevalence of demoralization among community-dwelling palliative care patients in Hong Kong; (2) the percentage of palliative care patients who are demoralized but not depressed and vice versa; and (3) the association of socio-demographic factors, particularly family support, with demoralization. METHOD: A cross-sectional study targeting community-living palliative care patients in Hong Kong was conducted. A total of 54 patients were recruited by a local hospice and interviewed for completing a questionnaire which included measures of demoralization, depression, perceived family support, and demographic information. RESULTS: The prevalence of demoralization was 64.8%. Although there was overlap between demoralization and depression (52.8% meeting the criteria of both), 7.5% of depressed patients were not demoralized, and 13.2% of demoralized patients were not depressed. Participants who were not single and had more depressive symptoms and less family support had a significantly higher demoralization level. SIGNIFICANCE OF RESULTS: This is the first study which reports the prevalence of demoralization in Hong Kong. Demoralization was found common in community-living palliative care patients receiving medical social work services in Hong Kong. This study provides evidence of the importance of differentiating the constructs between demoralization and depression. It also provides an implication that those who are married, more depressed, and have the least family support could be the most vulnerable group at risk of demoralization. We recommend that early assessment of demoralization among palliative care patients be considered.

Effects of an internationalization at home (IAH) programme on cultural awareness among medical and nursing students in Hong Kong and Indonesia during the COVID-19 pandemic: a mixed-methods study.

BACKGROUND: The COVID-19 pandemic has severely impacted the learning experience of students by limiting their opportunities for face-to-face intercultural exchanges. Given the importance of cultural competence in medical education, there is a need to develop a programme that promotes cultural awareness, but that offers more flexibility in terms of outbound mobility. This study aims to evaluate the effectiveness of an internationalization at home programme and to explore the learning experiences of medical and nursing students from Hong Kong and Indonesia. METHODS: Students were recruited from two universities in Hong Kong and Indonesia. They attended an online internationalization at home programme designed by members of the research team from both countries. A mixed-methods study was conducted using a concurrent triangulation approach. A pre-test post-test design was used to evaluate the effects of the programme on cultural awareness, and four focus groups were conducted to explore the students' experiences in the programme. Quantitative and qualitative data were analysed by T-test and reflexive thematic analysis, respectively. Data were integrated and triangulated using joint displays by comparing findings from both sources. RESULTS: One hundred and forty-eight students from Hong Kong and Indonesia participated in the study. After the programme, there was a significant improvement in cultural awareness. Three themes were identified: (1) learning process: enjoyable, but a desire remains for face-to-face cross-cultural communication; (2) learning outcomes: gained cultural awareness, developed cultural sensitivity, had an opportunity to practice language and learn about new learning styles; (3) factors influencing learning outcomes: facilitators (micro-movie and active communication) and barriers (language barrier, inappropriate time arrangement, insufficient prior briefing). CONCLUSION: This programme achieved the learning outcomes by successfully enhancing the cultural awareness of students during a time of pandemic when outbound student exchanges were not possible. Further adaptations of the programme are required to enhance different learning outcomes.

Impact of COVID-19 on Mental Health of Palliative Care Professionals and Services: A Mixed-Methods Survey Study.

INTRODUCTION: This study aimed to examine the mental health of palliative care professionals in Hong Kong during the COVID-19 pandemic, the relationship of mental health with socio-demographic factors, and the impact of the pandemic on palliative care services. METHODS: A total of 142 palliative care professionals in Hong Kong participated in an online survey. The questionnaire includes measurements on depression, anxiety, perceived stress, post-traumatic stress, professional quality of life, items that measure the effect of COVID-19 on palliative care services, and one open-ended question for describing how the services were affected. Descriptive and multivariate regression analyses were conducted. Quantitative and qualitative data about the impact of COVID-19 on palliative care services were analyzed and triangulated using a mixed-methods approach. RESULTS: Up to 82%, 43%, and 42% of the participants felt moderately to highly stressed, anxious, and depressed, respectively, during the pandemic. Younger participants tended to have poorer mental health and professional quality of life. Around 82% felt stressed when communicating with patients and family members under the no-visiting policy during the pandemic. More than three-quarters of participants showed lack of confidence in the anti-epidemic policy of the government. Qualitative findings identified 3 themes affecting the provision of palliative care: 1. the tightening of restrictions on visitors; 2. the limited provision of services; and 3. staff deployment. CONCLUSIONS: Appropriate responses are required to give extra support to palliative care professionals during the pandemic and facilitate their coping with the impact of COVID-19 on the provision of palliative care.

The Use of Modified Mindfulness-Based Stress Reduction and Mindfulness-Based Cognitive Therapy Program for Family Caregivers of People Living with Dementia: A Feasibility Study.

PURPOSE: The aim of this study was to investigate the feasibility and preliminary efficacy of a modified mindfulness-based stress reduction (MBSR) program and mindfulness-based cognitive therapy (MBCT) program for reducing the stress, depressive symptoms, and subjective burden of family caregivers of people with dementia (PWD). METHODS: A prospective, parallel-group, randomized controlled trial design was adopted. Fifty-seven participants were recruited from the community and randomized into either the modified MBSR group (n = 27) or modified MBCT group (n = 26), receiving seven face-to-face intervention sessions for more than 16 weeks. Various psychological outcomes were measured at baseline (T0), immediately after intervention (T1), and at the 3-month follow-up (T2). RESULTS: Both interventions were found to be feasible in view of the high attendance (more than 70.0%) and low attrition (3.8%) rates. The mixed analysis of variance (ANOVA) results showed positive within-group effects on perceived stress (p = .030, Cohen's d = 0.54), depressive symptoms (p = .002, Cohen's d = 0.77), and subjective caregiver burden (p < .001, Cohen's d = 1.12) in both interventions across the time points, whereas the modified MBCT had a larger effect on stress reduction, compared with the modified MBSR (p = .019). CONCLUSION: Both the modified MBSR and MBCT are acceptable to family caregivers of PWD. Their preliminary effects were improvements in stress, depressive symptoms, and subjective burden. The modified MBCT may be more suitable for caregivers of PWD than the MBSR. A future clinical trial is needed to confirm their effectiveness in improving the psychological well-being of caregivers of PWD.