Ethnic and cultural aspects of palliative care

2015 ◽  
Author(s):  
LaVera Crawley ◽  
Jonathan Koffman
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
World Health ◽  
Life Care ◽  
Cultural Aspects ◽  
Physical Conditions ◽  
Appropriate Treatment ◽  
Definition Of ◽  
Health Organization

This chapter attempts to identify ‘differences that make a difference’ when individuals and groups negotiate institutions and practices for palliative and end-of-life care. Two influences on the practice of palliative care-immigration and health disparities-are examined. The World Health Organization definition of palliative care specifies two goals: improving quality of life of patients and families and preventing and relieving suffering. It identifies three ‘colour blind’ strategies for meeting those goals: early identification, impeccable assessment, and (appropriate) treatment. Lastly, the definition addresses four domains of care: (1) problems related to pain, (2) physical conditions, (3) the psychosocial, (4) and the spiritual. This chapter specifically addresses these goals, strategies, and domains in relation to delivering quality palliative care in cross- or multicultural settings.

scholarly journals Last Chance to Care: An Autoethnography of End-of-Life Care in Indonesia

2018 ◽  
Author(s):  
Petra Wessner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Health Care Service ◽  
World Health ◽  
Life Care ◽  
Possible World ◽  
Palliative Care Services ◽  
Health Organization

In Australia, palliative care is an accepted and expected part of contemporary health care service provision. Efficacious palliative care focusses on managing pain and symptoms and making the patient as comfortable as possible (World Health Organization Definition of Palliative Care (WHO, 2010). As well, palliative care focusses on the spiritual and psycho-social dimensions of life (Martina, 2017), providing the opportunity for the patient and their family to continue to be engaged with life and self-determined decision making throughout palliation. In this account, utilizing the qualitative research method of autoethnography the Australian author describes her experience of caring for her Indonesian father-in-law in the last week of his life. She explores emerging tensions associated with local end-of-life care and Western care which trigger deeper feelings associated with losing a loved one, complicated by the recent and sudden loss of her own parents. Narration is a powerful tool for capturing the verisimilitude of everyday experiences, evoking in the reader a powerful resonance into a very personal inner life which is often not spoken about in academic texts. This account, a cultural story of dying in East Java, Indonesia, also provides insight into the author’s expectations, as an Australian and concludes with some reflections about the emerging position of palliative care services in Indonesia.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

scholarly journals Brazilian transgender children and adolescents: Attributes associated with quality of life

2020 ◽  
Vol 28 ◽  
Author(s):  
Fernanda Karla Nascimento ◽  
Roberta Alvarenga Reis ◽  
Alexandre Saadeh ◽  
Fran Demétrio ◽  
Ivaneide Leal Ataide Rodrigues ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
World Health ◽  
Social Dimensions ◽  
Transgender Children ◽  
Prejudice And Discrimination ◽  
Definition Of ◽  
Health Organization ◽  
Negative Attributes

Objective: to describe attributes associated with the Quality of Life of Brazilian transgender children and adolescents according to their own perception. Method: descriptive study conducted with 32 participants between eight and 18 years old, who were either interviewed or participated in focus groups. The statements were transcribed, grouped with the aid of the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires software, version 0.7 alpha 2 and described according to the definition of Quality of Life by the World Health Organization concerning to the mental, physical, and social dimensions. Results: it was possible to identify the family nucleus as the main social support for transgender children and adolescents. However, the experience of prejudice and discrimination were negative attributes associated with Quality of Life. Conclusion: the statements indicate that lives of transgender children and adolescents are impacted by social, physical, and mental factors due to the stigma and discrimination experienced. It is expected to contribute to the formulation of public policies related to transgender children and adolescents and expand the discussion on the citizens’ duties and rights in relation to transsexuality.

scholarly journals PENGEMBANGAN KAPASITAS PEREMPUAN BAGI IBU-IBU RELAWAN PROGRAM PALIATIF DI DESA KAMBINGAN DAN DESA KREMBUNG, KECAMATAN CERME, KABUPATEN GRESIK

2020 ◽  
Vol 4 (1) ◽  
pp. 189
Author(s):  
Sulikah Asmorowati ◽  
Inge Dhamanty
Keyword(s):  
Palliative Care ◽  
High Rate ◽  
World Health ◽  
Target Area ◽  
Target Groups ◽  
Community Project ◽  
Health Organization ◽  
End Stage

The high rate of deaths caused by serious illnesses has led the World Health Organization (WHO) to recommend palliative care that is considered to be able to improve the quality of patient’s live Palliative care or service is service for patients with serious illnesses, such as cancer (stadium or end-stage). In this activity, however, palliative care and service is extended so that it includes diseases that are not contagious but deadly (thus, contributed significantly to mortality rate), including such illnesses as diabetes, high-blood pressure, cholesterol, stroke and other similar illnesses. These illnesses are now increasingly being suffered by and become the major cause of death (caused by illnesses) amongst Indonesians. In order to increase the availability of palliative services in the target area, this community project provides training and assistance to develop women’s capacity in the villages of Kambingan and Ngembung, Cerme, Gresik, so that they are ready to volunteers for palliative care and service in their respective communities. The projects were conducted by providing material through lectures, and modules; followed by assistance to form a team of palliative case and service. At the end, this project resulted in the increasing understanding, and capacity of women (and mothers or PKK member), as the target groups about palliative care and services. In turn, the women were then ready to become volunteers for palliative care and program.abstrakTingginya tingkat kematian akibat penyakit serius membuat WHO menyarankan untuk melakukan perawatan paliatif yang dianggap dapat meningkatkan kualitas hidup pasien. Program atau layanan paliatif adalah pelayanan kepada pasien dengan penyakit berat, yaitu kanker (stadium akhir). Dalam kegiatan pengabdian masyarakat (pengmas) ini, layanan paliatif diperluas sehingga meliputi pula penyakit-penyakit yang tidak menular namun mematikan, seperti penyakit diabates, darah tinggi, kolesterol, stroke dan sejenisnya yang dewasa ini semakin banyak di derita masyarakat Indonesia. Kegiatan pengmas ini memberikan pelatihan dan pendampingan untuk mengembangkan kapasitas ibu-ibu tim penggerak dan anggota PKK di Desa Kambingan dan Desa Ngembung, Kecamatan Cerme, Kabupaten Gresik agar siap untuk menjadi relawan program paliatif di lingkungan masyarakat masing-masing. Metode yang digunakan dalam kegiatan ini adalah dengan pemberian materi melalui ceramah, pemberian modul, serta pendampingan pembentukan tim paliatif sebagai follow-up kegiatan. Hasil yang dicapai dari kegiatan pengabdian masyarakat ini adalah meningkatnya pemahaman masyarakat khususnya ibu-ibu tentang layanan paliatif, serta meningkatnya kapasitas mereka,sehingga siap menjadi relawan program paliatif.

Cultural Issues in Palliative Care

2018 ◽  
Author(s):  
Sriram Yennurajalingam
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cultural Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Cultural Issues ◽  
Medical Interpreter ◽  
Improve Patient

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

scholarly journals ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Multidrug Resistant ◽  
Life Care ◽  
Hygiene Measures ◽  
Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

Palliative care in the intensive cardiac care unit

2015 ◽  
Author(s):  
Jayne Wood ◽  
Maureen Carruthers
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Symptom Control ◽  
World Health ◽  
Terminal Phase ◽  
Cardiac Care ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Cardiac Care Unit

Specialist palliative care services originally focused on improving the quality of life for patients with a diagnosis of cancer in the terminal phase of their illness. However, organizations, such as the World Health Organization, supported by recent national strategies, such as the End of Life Care Strategy (United Kingdom, 2008), promote the early integration of specialist palliative care into the management of patients with incurable disease, irrespective of the diagnosis. The primary goal of the intensive cardiac care unit is to help patients survive acute threats to their lives. However, the suddenness and severity of illness, particularly when associated with an underlying cardiological diagnosis, often means that the provision of optimal specialist palliative care is challenging. This chapter addresses key issues relating to the provision of specialist palliative care in the challenging and complex environment of the intensive cardiac care unit, including symptom control, end of life care, decision making, and communication. The benefits of multidisciplinary working for effective quality improvement in patient care and best support for patients, families/carers, and staff are also addressed. The importance of interdisciplinary working is highlighted, and, by embedding the principles of holistic care into daily practice, the intensive cardiac care unit can ensure that patients and their families/carers receive the support they need in a timely manner from individuals who are well supported in what is often considered to be one of the most challenging medical environments.

Violence and Health

2018 ◽  
Author(s):  
Maria Cecília de Souza Minayo ◽  
Saul Franco
Keyword(s):  
Health Sector ◽  
Well Being ◽  
Gender Violence ◽  
World Health ◽  
Mental Trauma ◽  
Policies And Programs ◽  
Definition Of ◽  
Health Organization ◽  
Forms Of Violence

Violence is a problem that accompanies the trajectory of humanity, but it presents itself in different ways in each society and throughout its historical development. Despite having different meanings according to the field of knowledge from which it is addressed and the institutions that tackle it, there are some common elements in the definition of this phenomenon. It is acknowledged as the intentional use of force and power by individuals, groups, classes, or countries to impose themselves on others, causing harm and limiting or denying rights. Its most frequent and visible forms include homicides, suicides, war, and terrorism, but violence is also articulated and manifested in less visible forms, such as gender violence, domestic violence, and enforced disappearances. Although attention to the consequences of different forms of violence has always been part of health services, its formal and global inclusion in health sector policies and guidelines is very recent. It was only in 1996 that the World Health Organization acknowledged it as a priority in the health programs of all countries. Violence affects individual and collective health; causes deaths, injuries, and physical and mental trauma; decreases the quality of life; and impairs the well-being of people, communities, and nations. At the same time, violence poses problems for health researchers trying to understand the complexity of its causes, its dynamics, and the different ways of dealing with it. It also poses serious challenges to health systems and services for the care of victims and perpetrators and the formulation of interdisciplinary, multi-professional, inter-sectoral, and socially articulated confrontation and prevention policies and programs.

Dementia 7. When dementia is diagnosed, supporting the person and family caregivers

2020 ◽  
Vol 14 (4) ◽  
pp. 178-184
Author(s):  
Linda Nazarko
Keyword(s):  
End Of Life Care ◽  
Progressive Disease ◽  
World Health ◽  
Her Family ◽  
Learning Capacity ◽  
The Family ◽  
Health Organization ◽  
Person With Dementia ◽  
The Impact

The impact of a dementia diagnosis can be devastating to the person with dementia and his or her family. The person and their loved ones have been informed that the person has a progressive disease that affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement ( World Health Organization (WHO), 2017 ). It is often thought of as a diagnosis of despair; however, if managed well, the diagnosis is an opportunity to enable the person to experience the best possible quality of life and to inform the family of his or her wishes in relation to end-of-life care.

Early palliative care is associated with improved quality of end-of-life care for women with high risk gynecologic malignancies

2017 ◽  
Vol 145 ◽  
pp. 26
Author(s):  
N.S. Nevadunsky ◽  
C. Zanartu ◽  
P. Pinto ◽  
R. Barrera ◽  
A.R. Van Arsdale ◽  
...  
Keyword(s):  
Palliative Care ◽  
High Risk ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Gynecologic Malignancies ◽  
Early Palliative Care
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