Views of healthcare professionals on their relationships with families of people living with dementia: A qualitative study.

OBJECTIVE: Healthcare professionals as well as families play a vital role in ensuring the quality of care for people living with dementia. However, the relationships between healthcare professionals and families of people living with dementia are not extensively examined, particularly within the Chinese cultural context of dementia. The goal of this study was to explore the views of healthcare professionals on their relationships with families of people living with dementia. DESIGN: This qualitative study was grounded in the interpretative phenomenological analysis framework. METHODS: Data were collected using focus-group interviews. Qualitative data were transcribed verbatim and analysed using interpretative phenomenological analysis. RESULTS: The study recruited a total of 26 healthcare professionals from 3 long-term care facilities. The study found that conflicts were inherent in the relationships between professionals and families of people living with dementia, and conflicts were found to manifest in three core domains: 1) Families demonstrated a lack of understanding about dementia, 2) Professionals faced challenges in managing families' unrealistic expectations regarding the disease status and the prognosis of people living with dementia, 3) Families did not perceive themselves as being responsible for the care of people living with dementia. CONCLUSIONS: The present study found that the prevailing factor underpinning the relational conflicts between healthcare professionals and families of people living with dementia, as reported by healthcare professionals was the perceived lack of understanding about dementia amongst families of those affected.

Reliability and Validation Study of Advance Care Planning Practice Scale among Health and Social Care Professionals.

Advance care planning (ACP) is a crucial process in clinical practice, enabling individuals to articulate their care preferences and goals, with significant implications for future healthcare. However, ACP practice of health and social care professionals (HSCPs) concerning patients, or their family members are rarely explored. The objective of the study was to adapt and validate a four-item scale assessing ACP practices of HSCPs toward patients or their family members. The ACP Practice Scale was evaluated through a cross-sectional online survey administered to HSCPs in Macao, assessing its factor structure, validity, and reliability. Based on a sample of 186 valid responses, the ACP Practice Scale demonstrated satisfactory levels of validity and reliability among HSPCs in Macao. The four-item scale explained 65.87% of the variance in ACP practice and exhibited strong internal consistency, with Cronbach's alpha and McDonald's omega coefficients of 0.82. Furthermore, item factor loadings ranged from 0.71 to 0.90. The ACP Practice Scale provides reliable and valid measurements of ACP practice among HSCPs. This instrument can help to enhance our understanding of ACP practices in clinical settings and support the advancement of advance care planning.

Home or hospital as the place of end-of-life care and death: A survey among Chinese residents of Macao.

Objectives: The study was the first to explore Chinese residents' preferred place of care at the end of life and preferred place of death in Macao. Methods: A cross-sectional questionnaire survey was conducted online and face-to-face. The questionnaire was designed in Chinese, and both online and face-to-face surveys were conducted in Chinese. The study was conducted in Macao. Macao residents aged 18 years and older were recruited. Results: A total of 737 responses were valid, 65% were female, aged between 19 and 101 years; 43.4% of respondents preferred to be cared for at home in the last 6 months; however, less than one-fifth preferred to die at home. One-third of respondents chose to die in the hospice, and over a quarter of them preferred to die in hospitals. Compared with people aged between 18 and 39 years, people aged between 40 and 64 years did not want to be cared for at home in the last 6 months, and they did not want to die at home either. Conclusion: The results of the study suggested that there is a need for palliative home care in Macao, and the government should consider developing such a service and review current laws and regulations in supporting the service. Education is equally important for healthcare professionals, enabling them to support palliative care development in the community.

Prevalence and Predictors of Willingness to Make Advance Directives among Macao Chinese.

While advance directives (ADs) are considered to be part of government's healthcare agenda, there has not been any public consultation for legislation, nor investigation regarding the public's views about ADs in the Chinese culture of Macao. The current study explored the Macao Chinese people's willingness to make ADs. Data were collected from 724 residents aged 18 years and above. Results showed that 533 respondents (73.6%) claimed that they were willing to complete an AD if the document was recognized legally. The experience of caring for relatives or friends with terminal illnesses, palliative care as the preferred end-of-life treatment option, and scoring higher in the Hospice Care Attitude Scale were the predictors of willingness to make ADs. Results of the study suggested that there was a relatively high number of people who would consider setting up ADs. Our study recommends that healthcare professionals should equip themselves to raise ADs-related discussions with patients. Moreover, the Macao Government is responsible for facilitating the introduction and implementation of ADs in order to improve overall end-of-life care quality in Macao.

Case study analysis of end of life care development in the Chinese cultural context of Macao: a social movement perspective.

BACKGROUND: The modern hospice movement is often recognised as a social movement. However, such understanding is primarily based on historic reflection and this approach has lacked theoretical exploration. There is a lack of systematic examination of the modern hospice movement by way of social movement theories. AIM: Focusing on the Chinese socio-cultural context of Macao, this study aimed to understand the EoLC movement by applying the social movement theory, the Framing Perspective, as proposed by Snow and Benford in 1988. METHODS: A case study approach was conducted. Semi-structured interviews were held between 2012 and 2013, with pioneers (n = 11) of the EoLC in Macao. Thematic analysis was adopted to analyse the interviews. RESULTS: The Framing Perspective analysis illuminated that there was both growth and stagnation of the EoLC movement. Three themes emerged: 1) the suffering of people at the end of their lives was considered as a social problem needed to be addressed urgently, 2) the incoherent EoLC strategies developed by pioneers indicated the lack of internal ideological cohesion within the movement, 3) external constraints contributed to the stagnation of the movement. CONCLUSIONS: The EoLC development in Macao can be understood as a social movement. The Framing Perspective provided a theoretical way to understand the emergence of EoLC; offering a novel perspective to conceptualise the modern hospice movement. This sociological and theoretical lens opened up new ways for future research to study the emergence of EoLC in different socio-cultural contexts.

Knowledge of palliative care and preference of end of life care: a cross-sectional survey of residents in the Chinese socio-cultural background of Macao.

BACKGROUND: Since the establishment of a hospice in the year 2000 and the development of a palliative care ward in 2019, there is no study examining public's knowledge of palliative care, nor preference of end of life care in Macao. AIM: Targeting Chinese residents of Macao, the current study has 3 goals: i) to understand the level of knowledge of palliative care, ii) to explore the preference of end of life treatments, and iii) to identify the associated factors of the preference of end of life treatments. METHODS: A cross-sectional questionnaire survey was conducted using a structured questionnaire. The study employed non-probability quota sampling through which Macao residents aged 18 and above were recruited between July and September 2020. RESULTS: A total of 737 responses were valid. The average correct rate of palliative care knowledge ranged from 40.4% to 85.5%. Pertaining to end of life treatments, 62.0% of the respondents chose comfort care. However, almost half of the respondents agreed that life-sustaining treatments should not be stopped under any circumstances. Respondents who scored higher in palliative care knowledge and those with secondary and tertiary education were associated factors of choosing comfort care rather than life-sustaining treatments. In addition, respondents who agreed that futile life-sustaining treatments should be stopped were also associated with preference for comfort care. CONCLUSION: The understanding of palliative care amongst Macao residents is inadequate. Despite the public's inclination towards comfort care, it is generally believed that life-sustaining treatments should not be stopped at the end of life. The study results suggest that not only the knowledge of palliative care should be enhanced amongst the general public in Macao, but information about life-sustaining treatments should also be offered to patients and families by healthcare professionals, in aiding end of life treatment decision making.