METHODS: The ACPQ was translated according to international guidelines. This validation study was conducted from January to June 2018. Participants who were ≥ 21 years old, and able to understand Malay were recruited from an urban primary care clinic and a tertiary education institution in Malaysia. A researcher administered the ACPQ-M to participants via a face-to-face interview at baseline and 2 weeks later. Each interview took approximately 10-20 min.
RESULTS: A total of 222/232 participants agreed to participate (response rate = 96.0%). Exploratory factor analysis and confirmatory factor analysis found that the ACPQ-M was a 4-factor model. The Cronbach's α values for the four domains ranged from 0.674-0.947. Only 157/222 participants completed the test-retest (response rate = 71%). At test-retest, quadratic weighted kappa values for all domains ranged from 0.340-0.674, except for two domains which ranged from - 0.200-0.467.
CONCLUSIONS: The ACPQ-M was found to be a 4-factor model, and a valid and reliable instrument to assess the KAP regarding ACP. This instrument can contribute to profound understanding of the KAP of Malaysians regarding ACP, and assist policy makers in determining the readiness for legislation of ACP in Malaysia.
DESIGN: This cross-sectional study was conducted from July-September 2018.
SETTING: This study was conducted at the University Malaya Medical Centre, Kuala Lumpur, Malaysia.
PARTICIPANTS: We recruited community-dwelling adults (ambulatory care patients or their accompanying persons) who were ≥21 years old and able to understand English or Malay. A 1:10 systematic sampling procedure was used. Excluded were community-dwelling adults with intellectual disabilities or non-Malaysian accompanying persons. A trained researcher administered the validated English or Malay Advance Care Planning Questionnaire at baseline and 2 weeks later.
PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was the KAP regarding ACP. The secondary outcomes were factors associated with KAP.
RESULTS: A total of 385/393 community-dwelling adults agreed to participate (response rate 98%). Only 3.1% of the community-dwelling adults have heard about ACP and 85.7% of them felt that discussion on ACP was necessary after explanation of the term. The desire to maintain their decision-making ability when seriously ill (94.9%) and reducing family burden (91.6%) were the main motivating factors for ACP. In contrast, resorting to fate (86.5%) and perceived healthy condition (77.0%) were the main reasons against ACP. Overall, 84.4% would consider discussing ACP in the future. Community-dwelling adults who were employed were less likely to know about ACP (OR=0.167, 95% CI 0.050 to 0.559, p=0.004) whereas those with comorbidities were more likely to favour ACP (OR=2.460, 95% CI 1.161 to 5.213, p=0.019). No factor was found to be associated with the practice of ACP.
CONCLUSIONS: Despite the lack of awareness regarding ACP, majority of community-dwelling adults in Malaysia had a positive attitude towards ACP and were willing to engage in a discussion regarding ACP after the term 'ACP' has been explained to them.
DESIGN: Mixed-methods systematic review (PROSPERO: CRD42018091033).
SETTING AND PARTICIPANTS: Asian adults (≥18 years old) living in the community globally.
METHODS: Medline (Ovid), Web of Science, CINAHL (EBSCO), Open Grey, and Google Scholar were searched from inception to June 30, 2022. Qualitative, quantitative, or mixed-methods studies reporting on the views of non-seriously ill community-dwelling Asian adults on ACP or the factors influencing their ACP uptake were included. Secondary research, studies not published in English, or studies not available as full text were excluded. Two independent teams of researchers extracted data, assessed methodologic quality, and performed the data analysis. Data analysis was conducted using the multistep convergent integrated approach based on Joanna Briggs Institute methodology for mixed-methods systematic review.
RESULTS: Fifty-eight studies were included. Non-seriously ill community-dwelling Asians were willing to engage in ACP (46.5%-84.4%) although their awareness (3.1%-42.9%) and uptake of ACP remained low (14.0%-53.4%). Background factors (sociodemographic factors, and health status, as well as experience and exposure to information) and underlying beliefs (attitude toward ACP, subjective norm, and perceived behavioral control) were found to affect their uptake of ACP. A conceptual framework was developed to facilitate a proper approach to ACP for this population.
CONCLUSIONS AND IMPLICATIONS: A flexible approach toward ACP is needed for non-seriously ill community-dwelling Asians. There is also a need to raise end-of-life and ACP literacy, and to explore ways to narrow the gap in the expectations and implementation of ACP so that trust in its effective execution can be built.