Hui-Ju Liang

Background: High-quality recommendations require rigorous methods based on strong evidence to improve clinical practice. In palliative and end-of-life care, expert consensus is sometimes achieved through nominal group techniques. However, its practical challenges are often underestimated, potentially compromising the rigour and the quality of the recommendations. Methodological reflections: The methodological reflections on developing recommendations using the nominal group technique are discussed in this paper. These reflections are drawn from its theoretical foundations and applications in palliative care research, including a Taiwanese study on preparing families for a relative’s death. We highlight key issues such as the omission of pilot meetings and the underestimation of practical challenges in conducting group meetings, including time constraints and real-world uncertainties, especially during the stages of listing, clarifying, voting and ranking recommendations. Cultural factors are often overlooked, as seen in the example study, where the moderator avoided interruptions to show respect and politeness during the meeting. Additionally, valuable data gathered during meetings is often underutilised. These factors collectively can undermine the quality of recommendations. Based on these insights, we offer suggestions for improvement. Key suggestions: Pilot meetings should be conducted and reported to demonstrate how they inform the main meeting, ensuring research rigour and recommendation quality. Sufficient time should be allocated for listing and clarifying recommendations and in societies with specific etiquettes (e.g. minimising interruptions to show politeness). Further qualitative analysis of meeting transcripts is suggested to better understand the context and rationale behind the recommendations and enhance their applicability and clarity.

Background: Death preparations can benefit families both before and during bereavement. While these preparations are culturally influenced, evidence from non-Western cultures, like Eastern Asia, is limited. Aim: To explore how family caregivers prepare for a relative’s death in Taiwan. Design: A qualitative interview study analysed with reflexive thematic analysis. Setting/participants: Twenty-two primary family caregivers following a death involving specialist palliative care were interviewed. Results: An overarching theme was ‘getting everything right to have no regrets between the dead and the living’. Within this, two themes focussed upon improving the dying relative’s outcomes and the families’ subsequent bereavement: (1) ‘making the right end-of-life decisions is crucial but complex’, exploring preparations to involve (or not) the dying relative in making choices to minimise regrets. Participants often felt they understood the dying relative’s wishes so respected their preferences while maintaining family harmony through consensus-building and professional guidance. (2) ‘becoming a competent caregiver is the priority’, addressing preparations for fulfilling responsibilities, making sacrifices and developing caregiving competence to ensure the dying relative’s comfort. This would help reduce feelings of regret about not having done enough. Conclusion: Preparing for end-of-life decisions and caregiving is important for participants to reduce regret, benefiting subsequent bereavement. Of particular importance is family involvement and consensus-building in end-of-life decisions, reflecting Taiwan’s family-led culture. These findings can inform clinical practices in family-centric decision-making cultures where healthcare workers should be aware of the need to build consensus, sometimes without involving the dying person. Future research should include patients’ and healthcare professionals’ perspectives.

Background: Adequate death preparation positively influences families’ experience before death and during bereavement. However, how to prepare families in non-Western cultures has received scant attention. Aim: To explore family caregivers’ experiences in preparing for a relative’s death in specialist palliative care in Taiwan. Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured interviews was conducted. Setting/participants: Twenty-two family caregivers from seven hospitals participated. Results: The overarching theme was ‘getting everything right to have no regrets between the dead and the living’. We developed two themes to explain preparations for the time surrounding and after the death, including the deceased’ afterlife: (1) ‘having a good ending but not the end of the relationship’, which addresses preparations for the death itself, the funeral, the afterlife and maintaining connections and (2) ‘using religious beliefs and cultural norms to guide preparation’, which explores perceptions of a good death, including refrain from strong emotions before and after the death. Conclusion: Funeral arrangements, enhancing the deceased’s afterlife and maintaining connections to the deceased are crucial for families’ experiences which can be impacted by actions they take as they prepare for the death. A culturally appropriate death is beneficial for the dying relative which includes preparing to not show strong emotions during and after the death. These insights inform the importance of the cultural context in death preparation in Taiwan and provide perspectives for palliative care beyond Western culture, potentially benefiting Chinese populations, predominantly East Asian and Buddhist societies.

Background: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. Methods: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker’s appraisal tool. A narrative synthesis approach using Popay’s work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members’ bereavement experiences were included. We excluded papers studying bereavement through the death of a child. Results: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. Conclusion: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research.