scholarly journals Family refusal to donate organs and tissue for transplantation

2008 ◽  
Vol 16 (3) ◽  
pp. 458-464 ◽  
Author(s):  
Edvaldo Leal de Moraes ◽  
Maria Cristina Komatsu Braga Massarollo
Keyword(s):  
Decision Making ◽  
Qualitative Research ◽  
Brain Death ◽  
Organ Donation ◽  
Family Member ◽  
Tissue Donation ◽  
Decision Making Process ◽  
Family Conflicts ◽  
Loved One ◽  
The Family

This study aimed to discover how potential eligible donor families perceive the decision-making process to refuse organ and tissue donation for transplantation. A qualitative research was performed in order to understand the families' perception, based on the situated-phenomenon structure. Eight family members were interviewed, with four themes and fourteen subthemes emerging from the analysis of the statements. The propositions that emerged from the study indicated that the essence of the phenomenon was manifested as a shocking or despairing situation, experienced through the hospitalization of the family member; distrust regarding organ donation; denial of brain death; grief and weariness due to the loss of the loved one, family conflicts for making the decision and the multiple causes for refusing donation. Therefore, the knowledge of this phenomenon can provide information to guide professional action involving the families of potential donors.

scholarly journals A Gift of Generosity—An Explanation of Organ and Tissue Donation and Transplantation for Muslim Audiences

Religions ◽  
2021 ◽  
Vol 12 (10) ◽  
pp. 815
Author(s):  
Mohammad Abdus Sayek Khan
Keyword(s):  
Organ Donation ◽  
Life Support ◽  
Organ Donor ◽  
Tissue Donation ◽  
Loved One ◽  
Organ And Tissue Donation ◽  
Lack Of Information ◽  
The Family ◽  
End Stage

Diseased Organ and tissue donation and transplantation entails removing organ and tissues from someone (the donor) and transplanting them into another person (the recipient). Transplanting organs and tissues from one person hold the capacity to save or significantly improve the quality of life of multiple recipients. This is a rare opportunity for one to become an organ donor. In 2018, Australia had a population of 24.99 million. A total of 160,909 lives were lost that year; almost half of this death occurred in hospitals. However, a person may only be able to become a donor if their death occurs in a particular way and fulfils a defined set of special criteria—for example, while on the life support machine in an intensive care unit. Because of this, only 1211 people out of the large number of lives lost in 2018 were eligible to be potential organ donors. This is one of reasons we encourage everybody to consider the virtues of organ and tissue donation in any end-of-life discussion. Diseased organ donation occurs only when the clinician is certain that the person has died. The death is diagnosed by neurological criteria or by circulatory criteria which are discussed in detail in the article. This is an unconditional altruistic and non-commercial act. A large number of people are waiting on transplant list in Australia who are suffering from end stage organ failure; some of them will die waiting unless one receives an organ transplantation. Australians are known to be highly generous people. That is why 98% of Australian say ‘Yes’ to become an organ donor when they die. But in reality, only about 64% of families consent for organ donation on an average. There are widespread misconceptions and myths about this subject, mostly due to lack of information and knowledge. I have attempted to explain the steps of diseased organ donation in this article which, hopefully will be able to break some of those misconceptions. I have avoided to discuss living donation which is entirely a different subject. I have only touched on Islamic perspective of organ donation here as multiple Islamic scholars are going to shed lights here. We encourage everybody to ‘Discover’ the facts about organ and tissue donation, to make an informed ‘Decision’ and ‘Discuss’ this with the family. If the family knows the wishes of the loved one, it makes their decision-making process much easier during such a devastating and stressful time.

scholarly journals ASPECTOS ÉTICOS E LEGAIS DA MORTE ENCEFÁLICA CONHECIDOS POR ESTUDANTES DE ENFERMAGEM

2019 ◽  
Vol 10 (1) ◽  
Author(s):  
Ednalva Alves Heliodoro ◽  
Darci De Oliveira Santa Rosa
Keyword(s):  
Decision Making ◽  
Nursing Students ◽  
Brain Death ◽  
Organ Donation ◽  
Education Institution ◽  
Legal Aspects ◽  
The Body ◽  
Informed Consent Form ◽  
The Family ◽  
Family Autonomy

Objetivo: analisar os aspectos éticos e legais da morte encefálica conhecidos por estudantes de enfermagem. Metodologia: pesquisa qualitativa com vinte estudantes de enfermagem de uma instituição superior de ensino, no período de junho a julho 2014, por entrevistas gravadas, submetida a análise do discurso do Sujeito Coletivo. Resultados: os conhecimentos adquiridos pelos estudantes de enfermagem envolvem seis dimensões expressa nas ideias centrais: Ações para identificação de possíveis doadores em morte encefálica; Confirmação de morte encefálica e seu registro; Aspectos éticos e legais da comunicação à família sobre morte encefálica; Tomada de decisão da família sobre a doação ou não de órgãos; Assinatura do Termo de consentimento livre e esclarecido pela família; Garantia da integridade do corpo. Conclusão: os estudantes de enfermagem conhecem as normativas que regem a doação de órgãos, valorizam a autonomia da família, necessários para a tomada de decisão frente a ética do cuidado.Descritores: Morte encefálica, Estudantes de enfermagem, Ética, Legislação.ETHICAL AND LEGAL ASPECTS OF ENCEPHALIC DEATH KNOWN BY NURSING STUDENTSObjective: to analyze the ethical and legal aspects of brain death known to nursing students. Methodology: qualitative research with twenty nursing students from a higher education institution, from June to July 2014, by recorded interviews, submitted to the analysis of the Discourse of the Collective Subject. Results: the knowledge acquired by nursing students involves six dimensions expressed in the central ideas: Actions to identify possible donors in brain death; Confirmation of encephalic death and its registration; Ethical and legal aspects of communication to the family about brain death; Family decision-making on organ donation or non-donation; Signature of the informed consent form by the family; Guarantee of the integrity of the body. Conclusion: nursing students know the rules governing organ donation, value family autonomy, necessary for decision-making regarding the ethics of care.Descriptors: Brain death, Nursing students, Ethics, Legislation.ASPECTOS ÉTICOS Y LEGALES DE LA MUERTE ENCEFÁLICA CONOCIDOS POR ESTUDIANTES DE ENFERMERÍAObjetivo: analizar los aspectos éticos y legales de la muerte encefálica conocidos por estudiantes de enfermería. Metodología: investigación cualitativa con veinte estudiantes de enfermería de una institución superior de enseñanza, en el período de junio a julio de 2014, por entrevistas grabadas, sometida a análisis del discurso del Sujeto Colectivo. Resultados: los conocimientos adquiridos por los estudiantes de enfermería involucra seis dimensiones expresadas en las ideas centrales: Acciones para la identificación de posibles donantes en muerte encefálica; Confirmación de muerte encefálica y su registro; Aspectos éticos y legales de la comunicación a la familia sobre muerte encefálica; Toma de decisión de la familia sobre la donación o no de órganos; Firma del Término de consentimiento libre y esclarecido por la familia; Garantía de la integridad del cuerpo. Conclusión: los estudiantes de enfermería conocen las normativas que rigen la donación de órganos, valoran la autonomía de la familia, necesarios para la toma de decisión frente a la ética del cuidado.Descriptores: Muerte encefálica, Estudiantes de enfermería, Ética, Legislación.

A Qualitative Study on Traumatic Experiences of Suicide Survivors

2021 ◽  
pp. 003022282110244
Author(s):  
Júlia Camargo Contessa ◽  
Carolina Stopinski Padoan ◽  
Jéssica Leandra Gonçalves da Silva ◽  
Pedro V. S. Magalhães
Keyword(s):  
Qualitative Study ◽  
Family Member ◽  
Traumatic Experience ◽  
Traumatic Experiences ◽  
Suicide Survivors ◽  
Loved One ◽  
The Family

The suicide of a loved one can be a traumatic experience. The objective of this study was to investigate trauma-related experiences of suicide survivors. This is a qualitative study with people who had recently lost a family member or a close one to suicide, conducted at least two months after the event. Forty-one participants agreed to take part in the study and were interviewed. The interviewees' perception was that suicide brought harm, symptoms, and suffering. Traumatic experiences can begin immediately after the event, with many reporting symptoms lasting many months and persistent impact, both personal and to the family. Postvention models after suicide should incorporate such findings, and investigate trauma consistently.

Family perspectives on organ and tissue donation for transplantation: A principlist analysis

2017 ◽  
Vol 25 (8) ◽  
pp. 1041-1050
Author(s):  
Marcelo José dos Santos ◽  
Lydia Feito
Keyword(s):  
Organ Donation ◽  
Organ Procurement ◽  
Sao Paulo ◽  
Tissue Donation ◽  
São Paulo ◽  
Ethical Considerations ◽  
Donation Process ◽  
The Family ◽  
Organ Procurement Organizations ◽  
Family Interview

Background: The family interview context is permeated by numerous ethical issues which may generate conflicts and impact on organ donation process. Objective: This study aims to analyze the family interview process with a focus on principlist bioethics. Method: This exploratory, descriptive study uses a qualitative approach. The speeches were collected using the following prompt: “Talk about the family interview for the donation of organs and tissues for transplantation, from the preparation for the interview to the decision of the family to donate or not.” For the treatment of qualitative data, we chose the method of content analysis and categorical thematic analysis. Participants: The study involved 18 nurses who worked in three municipal organ procurement organizations in São Paulo, Brazil, and who conducted family interviews for organ donation. Ethical considerations: The data were collected after approval of the study by the Research Ethics Committee of the School of Nursing of the University of São Paulo. Results: The results were classified into four categories and three subcategories. The categories are the principles adopted by principlist bioethics. Discussion: The principles of autonomy, beneficence, non-maleficence, and justice permeate the family interview and reveal their importance in the organs and tissues donation process for transplantation. Conclusion: The analysis of family interviews for the donation of organs and tissues for transplantation with a focus on principlist bioethics indicates that the process involves many ethical considerations. The elucidation of these aspects contributes to the discussion, training, and improvement of professionals, whether nurses or not, who work in organ procurement organizations and can improve the curriculum of existing training programs for transplant coordinators who pursue ethics in donation and transplantation as their foundation.

scholarly journals Development and validation of the Family Decision-Making Self-Efficacy Scale

2009 ◽  
Vol 7 (3) ◽  
pp. 315-321 ◽  
Author(s):  
Marie T. Nolan ◽  
Mark T. Hughes ◽  
Joan Kub ◽  
Peter B. Terry ◽  
Alan Astrow ◽  
...  
Keyword(s):  
Decision Making ◽  
Self Efficacy ◽  
Family Members ◽  
Terminally Ill ◽  
Loved One ◽  
The Family ◽  
Family Decision ◽  
Patient Scenario ◽  
Family Decision Making ◽  
Test Retest Reliability

AbstractObjective:Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.Methods:On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.Results:A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.Significance of results:The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

Prenatal Genetic Diagnosis for Pediatricians

PEDIATRICS ◽  
1994 ◽  
Vol 93 (6) ◽  
pp. 1010-1015
Author(s):  
Keyword(s):  
Decision Making ◽  
Genetic Counseling ◽  
Prenatal Diagnosis ◽  
Diagnostic Tests ◽  
Genetic Disorder ◽  
Genetic Diagnosis ◽  
Decision Making Process ◽  
Know How ◽  
Prenatal Genetic Diagnosis ◽  
The Family

Pediatricians may be called upon to counsel a family in which prenatal diagnosis is being considered or in which there is a fetus with a genetic disorder. In some settings, the pediatrician may be the primary resource for counseling the family. More frequently, counseling may already have been provided by a clinical geneticist and/or obstetrician. However, because of a previous relationship with the family, the pediatrician may be called upon to review this information and to assist the family in the decision-making process. The pediatrician should be familiar with the principles of prenatal genetic diagnosis and know how to apply them to specific problems in genetic counseling, diagnosis, and management in clinical practice. At the same time, pediatricians should be familiar with resources available in their region for obtaining information about whether and how a specific disorder can be diagnosed and when and where to refer patients for prenatal genetic diagnosis. The technology of prenatal diagnosis is changing rapidly, and genetic consultants can assist pediatricians in the appropriate utilization and interpretation of the diagnostic tests that are available.

Respite Tourism for Family Caregivers

2015 ◽  
pp. 218-231
Author(s):  
Robert Holda
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Tourism ◽  
Target Market ◽  
Loved One ◽  
Specific Target ◽  
Personal Time ◽  
The Family ◽  
Effects Of Stress

One of the most misunderstood and unappreciated segments of society in relation to medical tourism is the family caregiver; those caring for a loved one who sacrifice their own employment schedule, their personal time for relaxing and recreation, and often and importantly their own health. The purpose of this chapter is to raise awareness of the plight of family caregivers as an issue for medical tourism, the effects of stress and burnout, and the essential need for respite of body, mind, and spirit for these central assistants in the matter of healthcare for patients. Though healthcare and its subset, medical tourism, are frequently perceived as focused on a “patient”, they also encompass many other individuals and organizations. As addressed here, the focus is on the family member caring for a loved one. The intent is to link the concept of medical tourism as an avenue for relaxation and respite to enhance the wellness of this specific target market.

How Substance Problems Affect the Family Unit

2019 ◽  
pp. 72-78
Author(s):  
Dennis C. Daley ◽  
Antoine Douaihy
Keyword(s):  
Family Member ◽  
Family Life ◽  
Family Members ◽  
Emotional Pain ◽  
Loved One ◽  
Family Unit ◽  
The Family

A family unit is a system in which various parts have an impact on other parts. This chapter looks at how families, concerned others, and friends are affected by a loved one’s SUD. Any family member may be hurt by a loved one with an SUD. The effects may vary among families and among members within the same family, but emotional pain and disruption of family life are common. Attention often centers on the member with the SUD, while overall family pain and distress are ignored. Individuals with SUDs often “underfunction,” which means that other members of the family have to pick up the slack and “overfunction.” This dynamic may change how family members communicate or relate to one another. The effects on families vary from mild to severe—in which a family is torn apart by an SUD.

Treatment decision-making for older adults with cancer: A qualitative study

2020 ◽  
pp. 096973302094575
Author(s):  
Ni Gong ◽  
Qianqian Du ◽  
Hongyu Lou ◽  
Yiheng Zhang ◽  
Hengying Fang ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Family Members ◽  
Treatment Decision ◽  
Chinese Society ◽  
Decision Making Process ◽  
Treatment Decision Making ◽  
The Family ◽  
Older Cancer Patients

Background: Independent decision-making is one of the basic rights of patients. However, in clinical practice, most older cancer patients’ treatment decisions are made by family members. Objective: This study attempted to analyze the treatment decision-making process and formation mechanism for older cancer patients within the special cultural context of Chinese medical practice. Method: A qualitative study was conducted. With the sample saturation principle, data collected by in-depth interviews with 17 family members and 12 patients were subjected to thematic analysis. Ethical considerations: The study was approved by the ethics committees of Sun Yat-sen University. All participants provided verbal informed consent after being told their rights of confidentiality, anonymity, and voluntary participation. They had the right to refuse to answer questions and could withdraw at any time. Results: Three themes emerged: (1) complex process; (2) transformation of family decision-making power; and (3) individual compromise. Family members inevitably had different opinions during the long process of treatment decision-making for older cancer patients. The direction of this process could be regarded as an extension of the family power relationship. The patient usually compromised the decision to survive, which was made by family members. Conclusion: This study describes the treatment decision-making process of older cancer patients in the context of Chinese culture. The reasons underlying this process are related to the views on life and death and family values. An individual is a part of the family, which is often seen as the minimal interpersonal unit in Chinese society. It is significant that while emphasizing patient autonomy in the decision-making process, health professionals should also pay attention to the important roles of culture and family.

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