Case study analysis of end of life care development in the Chinese cultural context of Macao: a social movement perspective.
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ABSTRACT: Background
The modern hospice movement is often recognised as a social movement. However, such understanding is primarily based on historic reflection and this approach has lacked theoretical exploration. There is a lack of systematic examination of the modern hospice movement by way of social movement theories.Aim
Focusing on the Chinese socio-cultural context of Macao, this study aimed to understand the EoLC movement by applying the social movement theory, the Framing Perspective, as proposed by Snow and Benford in 1988.Methods
A case study approach was conducted. Semi-structured interviews were held between 2012 and 2013, with pioneers (n = 11) of the EoLC in Macao. Thematic analysis was adopted to analyse the interviews.Results
The Framing Perspective analysis illuminated that there was both growth and stagnation of the EoLC movement. Three themes emerged: 1) the suffering of people at the end of their lives was considered as a social problem needed to be addressed urgently, 2) the incoherent EoLC strategies developed by pioneers indicated the lack of internal ideological cohesion within the movement, 3) external constraints contributed to the stagnation of the movement.Conclusions
The EoLC development in Macao can be understood as a social movement. The Framing Perspective provided a theoretical way to understand the emergence of EoLC; offering a novel perspective to conceptualise the modern hospice movement. This sociological and theoretical lens opened up new ways for future research to study the emergence of EoLC in different socio-cultural contexts.
SUBMITTER: Tam KI
PROVIDER: S-EPMC8272259 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundSince the establishment of a hospice in the year 2000 and the development of a palliative care ward in 2019, there is no study examining public's knowledge of palliative care, nor preference of end of life care in Macao.AimTargeting Chinese residents of Macao, the current study has 3 goals: i) to understand the level of knowledge of palliative care, ii) to explore the preference of end of life treatments, and iii) to identify the associated factors of the preference of end of life treatments.MethodsA cross-sectional questionnaire survey was conducted using a structured questionnaire. The study employed non-probability quota sampling through which Macao residents aged 18 and above were recruited between July and September 2020.ResultsA total of 737 responses were valid. The average correct rate of palliative care knowledge ranged from 40.4% to 85.5%. Pertaining to end of life treatments, 62.0% of the respondents chose comfort care. However, almost half of the respondents agreed that life-sustaining treatments should not be stopped under any circumstances. Respondents who scored higher in palliative care knowledge and those with secondary and tertiary education were associated factors of choosing comfort care rather than life-sustaining treatments. In addition, respondents who agreed that futile life-sustaining treatments should be stopped were also associated with preference for comfort care.ConclusionThe understanding of palliative care amongst Macao residents is inadequate. Despite the public's inclination towards comfort care, it is generally believed that life-sustaining treatments should not be stopped at the end of life. The study results suggest that not only the knowledge of palliative care should be enhanced amongst the general public in Macao, but information about life-sustaining treatments should also be offered to patients and families by healthcare professionals, in aiding end of life treatment decision making.
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Project description:BackgroundNurses' palliative and hospice care-specific education is associated with the quality of palliative and hospice care that influences health outcomes of patients with life-limiting illnesses and their caregivers. However, China lacks measures available to assess nurses' educational needs in palliative and hospice care. The End-of-Life Professional Caregiver Survey (EPCS) is a psychometrically reliable self-reporting scale to measure multidisciplinary professionals' palliative and hospice care educational needs. This study was performed to explore the psychometric properties of the Chinese version of the EPCS (EPCS-C) among Chinese nurses.MethodsWe translated and culturally adapted the EPCS into Chinese based on Beaton and colleagues' instrument adaptation process. A cross-sectional study design was used. We recruited 312 nurses from 1482 nurses in a tertiary hospital in central China using convenience sampling to complete the study. Participants completed the EPCS-C and a demographic questionnaire. Exploratory and confirmatory factor analysis was carried out to test and verify the construct validity of the nurse-specific EPCS-C. Cronbach's alpha coefficient was used to appraise the reliability of the nurse-specific EPCS-C.ResultsA three-factor structure of EPCS-C was determined, including cultural, ethical, and national values; patient- and family-centered communication; and effective care delivery. The exploratory factor analysis explained 70.82% of the total variances. The 3-factor solution of the nurse-specific EPCS-C had a satisfactory model fit: χ2 = 537.96, χ2/df = 2.96, CFI = 0.94, RMSEA = 0.079, IFI = 0.94, and GFI = 0.86. Cronbach's alpha coefficient of the overall questionnaire was 0.96.ConclusionsThe nurse-specific EPCS-C showed satisfactory reliability and validity to assess nurses' palliative and hospice care educational need. Further research is required to verify the reliability and validity of the EPCS-C in a larger sample, especially the criterion-related validity.
| S-EPMC7885229 | biostudies-literature
Project description:BackgroundResearch on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.MethodsWe combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies.ResultsFourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes.ConclusionsThe common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model.Trial registrationThe Graduate School and Faculty of Medicine Kyoto University (R1924-1).
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Project description:The sustained interest in exploring the spiritual domain at end of life in the Indian context reflects the recognition of its significance as an integral part of palliative care. A key aspect of findings from studies so far is the identification of challenges, inadequacies, limitations and ethical dilemmas in relation to spirituality at the end of life. India is known for its rich spiritual heritage and has unique ways of understanding, experiencing and expressing spirituality. The philosophical and cultural frames of reference, with which communities in India make sense of life, death and dying, determine the characteristics of Indian spirituality at the end of life. Exploring the concepts of the human person, the purpose of human life, the meaning of death and caring for the dying using Indian philosophical and cultural resources can help address some of the identified limitations and challenges in the Indian context. A cross-disciplinary approach, drawing together expertise from clinical palliative care, philosophy, theology and sociology, will enrich the understanding of spirituality at the end of life and can contribute to effective spiritual care in palliative care in specific contexts around the world.
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Project description:IntroductionThe concept of death is abstract, complex and has a number of meanings. Thus, its understanding and the approach taken to it depend, to a large extent, on aspects such as age, culture, training and religion. Nursing students have regular contact with the process of death and so it is of great interest to understand the attitudes they have towards it. As we live in a plural society it is even more interesting to not only understand the attitudes of Spanish students but, also, those of students coming from other countries. In the present article, we seek to identify and compare the attitudes held by nursing degree students at Hekima-Santé University (Senegal) and the University of Huelva (Spain) about end of life processes. The study identifies elements that condition attitudes and coping with death, whilst considering curricular differences with regards to specific end of life training.MethodA descriptive, cross-sectional and multi-center study was conducted. The overall sample (N = 142) was divided into groups: Hekima-Santé University (Dakar, Senegal) and the University of Huelva (Huelva, Spain). The measurement instruments used were an ad-hoc questionnaire and Bugen´s Coping with Death Scale.ResultsStatistically significant differences (p = 0.005, 95%CI) were found in relation to overall Bugen Scale scores. We can confirm that specialized end of life training (University of Huelva, Spain) did not lead to better coping when compared with a population whose academic curriculum did not provide specific training and who engaged in more religious practices (Hekima-Santé University, Senegal).ConclusionsIn cultures where religion not only influences the spiritual dimension of the individual, but acts in the ethical and moral system and consequently in the economic, educational and family sphere, the accompaniment at the end of life transcends the formative plane. Considering the plural society in which we live, the training that integrates the Degree in Nursing with regard to the care of the final process, must be multidimensional in which spirituality and faith are integrated, working emotional and attentional skills, as well as cultural competence strategies in this process.
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Project description:This public mental health study highlights the interactions among social determinants and resilience on mental health, PTSD and acculturation among Iraqi refugees in Sweden 2012-2013. Objectives: The study aims to understand participants' health, resilience and acculturation, paying specific attention to gender differences. Design: The study, using a convenience sampling survey design (N = 4010, 53.2% men), included measures on social determinants, general health, coping, CD-RISC, selected questions from the EMIC, PC-PTSD, and acculturation. Results: Gender differences and reported differences between life experiences in Iraq and Sweden were strong. In Sweden, religious activity was more widespread among women, whereas activity reflecting religion and spirituality as a coping mechanism decreased significantly among men. A sense of belonging both to a Swedish and an Iraqi ethnic identity was frequent. Positive self-evaluation in personal and social areas and goals in life was strong. The strongest perceived source of social support was from parents and siblings, while support from authorities generally was perceived as low. Self-rated health was high and the incidence of PTSD was low. A clear majority identified multiple social determinants contributing to mental health problems. Social or situational and emotional or developmental explanations were the most common. In general, resilience (as measured with CD-RISC) was low, with women's scores lower than that of men. Conclusions: Vulnerability manifested itself in unemployment after a long period in Sweden, weak social networks outside the family, unsupportive authorities, gender differences in acculturation, and women showing more mental health problems. Though low socially determined personal scores of resilience were found, we also identified a strong level of resilience, when using a culture-sensitive approach and appraising resilience as expressed in coping, meaning, and goals in life. Clinicians need to be aware of the risks of poorer mental health among refugees in general and women in particular, although mental health problems should not be presumed in the individual patient. Instead clinicians need to find ways of exploring the cultural and social worlds and needs of refugee patients. Authorities need to address the described post-migration problems and unmet needs of social support, together comprising the well-established area of the social determinants of health.
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