Abstract
BackgroundAn advance care plan (ACP) is widely accepted as a component of palliative care. ACP is intended to facilitate a patient’s autonomy and enable the provision of care aligned to an individual’s preferences as far as is possible. Evidence shows that it can improve outcomes of care, including increasing the use of hospice and palliative care and decreasing life-sustaining treatments and hospitalisation. This is relevant to Taiwan, where the number of cancer patients with palliative care needs is increasing. However, most of the research on ACP has been developed in Western cultures, with little evidence from Asian countries. This limits the transferability of the Western-oriented ACP interventions to Taiwan. Aim To develop a culturally-adapted ACP intervention to improve outcomes for people living with advanced cancer and their family members, and to preliminarily explore its feasibility and acceptability in Taiwan.
Methods
Design:
A sequential qualitative mixed-methods study was employed comprising a primarily qualitative component followed by supplementary qualitative and quantitative components. Medical Research Council guidance on developing and evaluating complex interventions and the Theory of Change guided the development, refinement, and preliminary feasibility phases of the study.
Setting and participants:
Two inpatient hospitals (one for intervention development; one for preliminary feasibility exploration) in Taiwan. Participants were adults with advanced cancer, their family members, and healthcare professionals.
Development phase:
A systematic review using narrative synthesis was conducted to develop the initial logic model of ACP intervention, which was used to inform the subsequent qualitative study using semi-structured interviews with advanced cancer patients, family members and healthcare professionals in Taiwan. The qualitative study aimed at exploring their perspectives on ACP and the contextual factors to inform the culturally-adapted ACP intervention. Thematic analysis was employed for data analysis in the qualitative study.
Refinement phase:
A transparent expert consultation, using modified nominal group techniques, and an online consensus survey were conducted to generate recommendations for refining the culturally-adapted ACP intervention based on the clinical environment.
Preliminary feasibility phase:
A single group, non-controlled, mixed-methods feasibility study guided by the previous phases was conducted to explore the feasibility and acceptability of the culturally-adapted ACP intervention. The ACP intervention incorporated a one-time intervention, comprising pre-ACP preparation and follow-up consultation. Qualitative interviews explored participants’ views on their involvement in the study participation. Patients’ medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis.
Results
Development phase
Systematic review:
Nine randomised controlled trials were included, with only four articulated conceptual models. All included papers were from Western countries (the majority were from the United States of America, n=5/9) and samples were largely highly educated Caucasians. An initial ACP logic model was developed. Mechanisms through which ACP improved outcomes were identified: 1) increasing patients’ knowledge of end-of-life (EOL) care and ACP; 2) strengthening patients’ autonomous motivation; 3) building patients’ competence to undertake EOL discussions; and 4) enhancing shared decision-making in a trusting clinician-patient relationship.
Qualitative study:
Forty-five participants (n=15 advanced cancer patients, n=15 family members and n=15 healthcare professionals) were interviewed. Three patterns of palliative care decision-making with relevant drivers were identified: 1) choosing palliative care; 2) declining palliative care and 3) having no opportunity to choose palliative care. Key contextual factors were: 1) family-led ACP discussions; 2) respect for ‘filial responsibility’; 3) misunderstanding of the terms palliative care and 4) high-quality EOL care communication. These data were used to adapt the initial ACP logic model.
Refinement phase
Transparent expert consultation:
Seventeen clinical staff attended the modified nominal group and 37 multidisciplinary experts rated the online survey, which generated 44 recommendations. ACP was suggested to encompass multi-professional care to meet the individual’s preferences with family members support. Key requirements to implement ACP were: raising public awareness; staff training on enhanced communication skills and institutional and policy support for changes in practice.
Preliminary feasibility phase
Preliminary feasibility study: Overall, 145 potential patients were screened for eligibility and 123 were excluded. Twenty-two patients were approached and referred for study participation, and 11 were recruited. A total of 10 ACP interventions involving 10 patients, 10 family members, and nine healthcare professionals were undertaken. The majority of the intervention components (n =10/13) were successfully implemented. Implementing the culturally-adapted ACP intervention for advanced cancer patients and their family in an inpatient hospital in Taiwan is possible. The participants reported the intervention to be acceptable. However, recruitment of patients with advanced cancer is challenging with both nearness to EOL and uncertainty about the value and benefit of palliative care and ACP in Taiwan. Four themes illustrating key contextual moderators influencing intervention feasibility were: 1) resource constraints resulting in increased clinical workload; 2) care decisions informed by previous care experience of supporting relatives of patients; 3) the requirement for financial and policy support, and 4) a presumption for EOL care provision and surrogate decision-making. Six areas for further intervention refinement were: 1) early initiative of EOL care discussions; 2) enabling patients to make informed decisions; 3) documentation to guide future care to reduce distress for patients/families; 4) simplifying the intervention to make it less abstract and more acceptable; 5) managing conflict between patients and family members around ACP, and 6) concordance with preferred care provision. Data were integrated to develop a conceptual model of ACP.
Conclusion
This novel study developed a culturally-adapted ACP intervention for advanced cancer patients and their family members in Taiwan. Implementing the ACP intervention in clinical practice is possible and acceptable. Careful use of local primary data to develop a conceptual underpinning and recruitment strategies were key to achieving these goals. This study provides valuable contributions to inform future ACP intervention development in the wider Asia-Pacific region. However, testing this conceptual model in a feasibility trial collaborated with implementation science is required.
| Date of Award | 1 Jun 2020 |
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| Original language | English |
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| Supervisor | Richard Harding (Supervisor), Catherine Evans (Supervisor) & Jonathan Koffman (Supervisor) |