Communicating palliative care to the younger generation in Singapore

Abstract

The utilization of palliative care is influenced not only by policy and infrastructure, but also individual perceptions and receptiveness in society. In Singapore, young people in the family are often expected to take responsibilities in medical decision-making for older family members. The thesis investigated the communication on palliative care among younger generation in Singapore through four studies. The research work developed a conceptual and theoretical framework on end-of-life and palliative care communication in Singapore, with the potential to be extended for other Eastern and Asian contexts. The thesis started with demonstrating the current status of palliative care research in Asia with a systematic review and identified the gaps in relevant research outside of clinical settings, and with a target population of caregivers and the general public. Additionally, inadequate knowledge on the topic was revealed despite generally favorable attitudes. The first study set the tone of the thesis with a systematic review of palliative care research on the key barriers in Asia, and the findings suggested that while there were favorable attitudes towards palliative care, there was inconsistent and varied knowledge, which was also detected among health professionals and in high-income countries. These findings indicated urgent needs of palliative care research from social science perspectives in Asia, with the aim to better educate the public to increase the understanding of palliative care. This study also opened opportunities for future research to expand the channel and volume of literature search, which may enable further comparisons. In public health communication and education, the provision and acquisition of information were an unavoidable topic. The second study analyzed data from a large-scale survey and identified what information caregivers in palliative care needed, and from which sources they intended to fulfill those needs. The findings showed the significant role of online information sources for caregivers, which further confirmed the necessity of the later studies, as active and self-motivated information seeking online was appreciated by caregivers, which could impact palliative care receptiveness. The study highlighted the direction of future studies to bridge the gap between caregiver expectations and healthcare professional recommendations, which could enhance the information delivery process and contribute to more comprehensive and effective palliative care communication. Based on the findings of the first two studies, the third study then further utilized the caregiver data from the large-scale survey and developed a theoretical framework to understand and predict palliative care receptiveness with behavioral and cultural factors and examining information needs and information seeking as mediators. The findings suggested that while behavioral and cultural factors could increase information needs, the needs for different target populations may impact online information seeking differently, which in turn influenced acceptance to palliative care in opposite directions. The third study highlighted the significance of online information in palliative care receptiveness and inspired the fourth study as it examined a communication strategy to provide palliative information to younger people. Due to statistical reasons, the study limited the cultural factors to fatalism, filial piety, and spirituality, but future research could expand the framework by examining the role of other cultural factors such as death anxiety and superstition, as well as in other healthcare service contexts. The fourth study tested the effectiveness of using narratives in palliative care communication with an online experiment, as narratives have been proven to be a successful approach in other health contexts. The findings suggested that while narratives could increase viewers' satisfaction with attractiveness and emotional support of the online audiovisual information, the affective responses from emotional support may reduce learning from the information, which consequently decreased the receptiveness to palliative care. The findings warned practitioners to carefully design the emotional component in palliative care communication, to avoid the risks of undesired effects. Future research could further improve this study by examining the effects of emotions in the use of narratives in end-of-life contexts. In conclusion, the thesis answers the questions from whether we need palliative care communication, what we need to communicate, what are the causes and effects of these communications, and how we may more effectively communicate. The research has built a solid fundament for future research in palliative care communication in Singapore and Asia.