Aims: This study explored perceptions on a good-life, good-death, and advance care planning in Koreans with non-cancerous chronic diseases with the goal to develop a culture-specific advance care planning intervention in this population.
Design: A qualitative descriptive design was used.
Methods: Data collections were conducted between September 2017 - June 2018. Twenty-nine patients aged 41-82 years (85.8% men) participated in the interviews lasting 40-60 min. The verbatim transcriptions of the semi-structured interview data were analysed using conventional content analysis.
Results: Good-life was described as 'present with physical and financial independence,' 'not burdensome to the family,' 'completed life responsibility', and 'helping others.' Some participants described good-death as 'prepared death' while others considered it as 'sudden death during sleep.' All participants wanted to have a painless death and not burden the family. Advance care planning was a new concept to many participants. It was likened to 'insurance.' Some participants believed that decision-making on life-sustaining treatment should be done by their family, not themselves, because of economic or emotional distress. Some participants wanted to discuss medical and non-medical care services to reduce the burden on self and family.
Conclusion: Family is key when it comes to the meaning of good-life and good-death. Cultural adaptation is necessary to meet the advance care planning needs of Koreans with non-cancerous chronic diseases.
Impact: Successfully implementing advance care planning in Koreans with non-cancerous chronic diseases depends on how it is adapted to the disease-specific characteristics compared with cancer, and the cultural norms and social context. Nurses need to be prepared to offer advance care planning to persons with non-cancerous chronic diseases based on a keen sense of and empathetic cultural competence.
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http://dx.doi.org/10.1111/jan.14633 | DOI Listing |
J Nurs Adm
December 2024
Author Affiliations: Senior Operations Leader, Analytics and Nurse Scientist (Dr Kim), Kaiser Permanente National Patient Care Services, Oakland; Assistant Clinical Professor (Dr Kim), Community Health Systems, University of California, San Francisco School of Nursing, San Francisco; Professor Emeritus (Dr Latham), California State University, Fullerton, School of Nursing, Fullerton; Education Program Coordinator (Dr Krom), Assistant Professor of Medicine (Dr Krom), Cedars-Sinai Marina Del Ray Hospital, Marina Del Ray; Director (Dr Failla), Nursing Workforce Transitions, Caster Nursing Institute, Sharp HealthCare, San Diego; Regional Director and Nurse Scientist (Dr Kawar), Nursing Research and EBP Program, Kaiser Permanente Southern California and Hawaii Patient Care Services, Pasadena.
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UK Health Security Agency, London, United Kingdom.
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View Article and Find Full Text PDFJ Am Med Inform Assoc
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Institute of Data Science, National University of Singapore, 117602, Singapore.
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PLoS One
January 2025
Academy for Health Equity, Prevention and Wellbeing (AHEPW) School of Health Sciences, Bangor University, Gwynedd, United Kingdom.
Background And Objective: Personal wheelchair budgets (PWBs) are offered to everyone in England eligible for a wheelchair provided through the National Health Service (NHS) to support their choice of equipment. The WATCh (Wheelchair outcomes Assessment Tool for Children) and related WATCh-Ad for adults are patient-centred outcome measures (PCOMs) developed to help individual users express their main outcome needs when obtaining a wheelchair and rate their satisfaction with subsequent outcomes after receiving their equipment. Use was explored in a real-world setting, aiming to produce guidance for use alongside the PWB process.
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Main Regional Center for Pain Relief and Supportive/Palliative Care, La Maddalena Cancer Center, Palermo, Italy.
In Italy a recent law was approved for providing patients' wishes regarding end of life issues, commonly referred internationally to as "living wills", (Dichiarazione anticipata di trattamento, DAT). Regardless of this official document, advance care planning (ACP) is often used in a palliative care setting to share the treatments to start, to continue, to withdraw, thus preventing the stress on an acute decision. The aim of this study was to assess DAT and ACP in patients with amyotropic lateral sclerosis admitted to home palliative care.
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