Qualitative case study analysis of the development of end of life care in Macao

Abstract

Background Since the concept of end of life care was first introduced in the late 80’s in Hong Kong (Chan, 2002) and Taiwan (Glass et al, 2010), research interests examining the influence of Chinese culture in respect of death, dying and end of life issues has gained popularity (Bowman & Singer, 2001; Chan & Chow, 2006; Chen et al, 2014; Hsu et al, 2009; Mjelde- Mossey & Chan, 2007; Tung, 2011; Zhou, 2016). However, there is a dearth of empirical examination on the process of the establishment and development of the concept and service of end of life care, within a socio-cultural Chinese environment. In the context of Macao, there is only one study (Lo, 2002) describing the establishment of the inpatient hospice, and to date, there is no empirical evidence on the establishment of end of life care, nor on factors that influence the development of end of life care in the context of Macao. Aim The aim of this case study was to develop a theoretical understanding of how the end of life care was introduced, established and developed, and to examine the factors that had shaped the end of life care in Macao. Methods A qualitative case study research approach (Stake, 1995) was conducted and the end of life care in Macao was the case of this research. Data was collected through in-depth, semi-structured interviews with the initiators (n=3) and developers (n=8), from three different settings that provide and promote end of life care in Macao. Interviews were digitally recorded and transcribed. Qualitative data analysis software, Nvivo 11, was used to organise the data and facilitate analysis. All data was analysed based on the principle of thematic analysis (Braun & Clarke, 2006). Findings Through thematic analysis, the emergence of end of life care in Macao can be understood to some extent to have developed through a social movement formation. Initiators with diverse backgrounds collectively conceptualised that the suffering of people as experienced at the end of their lives in Macao was a social problem needed to be changed, and they subsequently developed different approaches in pursuing for change. This findings also revealed that the growth of end of life care has become stagnant after the initial wave of establishment. The framing perspective (Snow & Benford, 1988; Snow et al, 2014; Snow et al, 1986) was adopted in this research in aiding the conceptualisation of end of life care in Macao as a social movement, and the development of a theoretical understanding regarding the development of end of life care in Macao. This research identified three key conceptual perspectives elucidating the developmental trajectory and factors contributing to the growth and then stagnation of end of life care in Macao. These three conceptual perspectives were: - The conceptualisation of the problem with dying: the suffering of people as experienced at the end of their lives (the grievance in the context of the framing perspective) - The incoherent strategies developed by initiators in establishing end of life care (the lack of internal frame cohesion) - The variety of contextual and conceptual constraints that influenced the subsequent development and then stagnation of end of life care (the lack of external frame cohesion) within the context of Macao The findings indicate the integration of these three conceptual perspectives has led to a holistic, theoretical understanding of the development of end of life care in Macao addressing the research aim and contributes to knowledge about end of life care. With specific regard to the socio-cultural environment of Macao, the study has taken a unique theoretical approach in developing understanding of the end of life care as a social movement by way of the framing perspective. This thesis has proposed a new way to examine the emergence of end of life care, which would facilitate the exploration of end of life care development in other cultural contexts.