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.

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.

Evaluating the effectiveness of a 6-week hybrid mindfulness-based intervention in reducing the stress among caregivers of patients with dementia during COVID-19 pandemic: protocol of a randomized controlled trial.

BACKGROUND: Mindfulness-based intervention (MBI), an emotion-focused approach, has been shown promising and sustainable effects on enhancing the well-being of caregivers of patients with dementia (PWD). However, the conventional MBI was quite demanding, had high rates of attrition and inconsistent long-term effect. The social distancing measures introduced during the COVID-19 pandemic also restricted face-to-face psychosocial intervention. The study aims to evaluate the effectiveness of a 6-week hybrid MBI in caregivers of PWD over a 6-month follow up. METHODS: This is a single-blinded, parallel-group randomized controlled trial (RCT). Eligible participants from three local nongovernmental organizations (NGOs) will be randomly divided into intervention groups and control groups in a ratio of 1:1. The participants in the intervention group will receive 6 weekly 90-min group-based sessions delivered through a face-to-face and online approach. The participants in the control group will receive brief education on dementia care with the same group size, duration, and frequency as the sessions in the intervention group. Immediately after the intervention and at the 6-month follow-up, caring stress and other outcomes will be assessed. Besides, a focus group interview will be conducted to identify the strengths, limitations, and therapeutic components of the intervention from their perspectives. For quantitative data, intention-to-treat analysis and Generalized Estimating Equations (GEE) will be used. For qualitative data, content analysis will be used. DISCUSSION: This proposed hybrid model of MBI has several advantages, such as lower duration, longer follow-up period and easier access by family caregivers. Also, physiological indicators (e.g., heart rate viability and neuropsychiatric symptoms) will be measured in this study to show the body change after MBI. The quantitative and qualitative data of this research can also benefit the development of online or hybrid MBI for caregivers of PWD during the COVID-19 pandemic. Despite these strengths, it does have practical challenges and limitations. However, this proposed intervention has the potential to benefit not only the participants, but also the researcher as well as public health providers. TRIAL REGISTRATION: NCT05242614. Registered on 2022-02-16, https://clinicaltrials.gov/ct2/show/NCT05242614.

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.