The Philosophical and Cultural Situatedness of Spirituality at the End of Life in India.
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ABSTRACT:
SUBMITTER: Inbadas H
PROVIDER: S-EPMC5545965 | biostudies-other | 2017 Jul-Sep
REPOSITORIES: biostudies-other
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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).
| S-EPMC9175529 | biostudies-literature
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.
| S-EPMC8378746 | biostudies-literature
Project description:End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya.An interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted.Two end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues.Findings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.
| S-EPMC5557528 | biostudies-other
Project description:BackgroundThe 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.AimFocusing 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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.
| S-EPMC8272259 | biostudies-literature
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:The EAT-Lancet Commission urgently called for "planetary health diets". The success of encouraging dietary shifts, however, crucially hinges on people, and more specifically on consumers' culture, context, socioeconomic status, food environment, attitudes, perceptions, beliefs, and behavior towards food choice. In India, enhanced food availability and accessibility do not readily lead to improved nutritional status. Thus, developing planetary health diets in India requires an understanding of systemic drivers of food choice. Food is an essential part of Indian culture and deeply rooted to the country's history, traditions, lifestyles, and customs. Yet, the diversity and cultural drivers of food choice are still insufficiently understood. To address this knowledge gap, we use expert elicitation to contextualize the "gastronomic systems research" framework to a target population of low-to middle-income households to capture the diversity and cultural drivers of food choice and its nutritional implications in rice-based diets in two states in eastern India. The experts catalogued 131 unique dishes associated with five differentiated daily dining occasions. The majority of dishes belong to the starch food group. Morning snacks exhibit the lowest nutritional diversity while dinners feature the highest diversity in both states. In West Bengal, dish options tend to be carbohydrate-rich and energy-dense, and a significant number of dishes are fried and oily. The gastronomic system mapped by the experts provides a useful baseline for nutritionists, policymakers, and food system actors as a first step in the design of nutrition intervention strategies to develop planetary health diets in eastern India.
| S-EPMC7737094 | biostudies-literature
Project description:Conservation and restoration of cultural heritage is something more than a simple process of maintaining the existing. It is an integral part of the improvement of the cultural asset. The social context around the restoration shapes the specific actions. Today, preservation, restoration, enhancement of cultural heritage are increasingly a multidisciplinary science, meeting point of researchers coming from heterogeneous study areas. Data scientists and Information technology (IT) specialists are increasingly important. In this context, networks of a new generation of smart sensors integrated with data mining and artificial intelligence play a crucial role and aim to become the new skin of cultural assets.
| S-EPMC7180608 | biostudies-literature
Project description:Culture influences an individual's perception of "health" and "sickness". Therefore, cultural competence assessment of healthcare professionals is very important. Existing assessment scales have limited application in India due to the nation's rich cultural diversity and heterogeneous healthcare streams. This study was undertaken to develop and validate a cultural competence assessment tool for healthcare professionals in India. A cross-sectional study using convenience sampling was conducted following all standard steps among 290 healthcare professionals in India. Item reduction was followed by estimation of validity and reliability. Responses were recorded on a five-point Likert scale, ranging from strongly disagree to strongly agree. The resultant tool, named Cultural Competence Assessment Tool-India (CCT-I) showed an acceptable internal consistency (Cronbach's alpha =0.734). Inter-rater agreement was 81.43%. Face, content, and construct validity were demonstrated. There was no statistically significant difference in cultural competence between the healthcare streams based on years of clinical experience. There was statistically significant difference between streams of healthcare (p-value =0.009) and also between dentistry and Ayurveda groups (p-value = 0.003). This comprehensive tool can be used as the first step toward designing cultural competence training of healthcare manpower and the establishment of culturally sensitive healthcare organizations.
| S-EPMC9445189 | biostudies-literature
Project description:ImportanceThere is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older.ObjectiveTo assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life.Design, setting, and participantsThis quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018.Main outcomes and measuresMeeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received.ResultsSurveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]).Conclusions and relevanceIn this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.
| S-EPMC8025115 | biostudies-literature
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.
| S-EPMC8220704 | biostudies-literature