Background: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family.
Aim: This study aimed to explore the meaning of supporting a loved one with MND to die.
Methods: This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying.
Findings: Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying-facing it alone).
Conclusion: Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.12968/ijpn.2019.25.6.284 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Improving Evidenced-based Outpatient Order Set Utilization in the Gastrointestinal Division of a Large Pediatric Health System.
Pediatr Qual Saf
January 2025
Division of Hospital Medicine, Akron Children's Hospital, Akron, Ohio.
Introduction: Standardization is crucial in improving healthcare outcomes, equity and quality. Clinical decision support tools are key to achieving this goal. At our organization, Epic serves as our electronic health record, and SmartSets are Epic's version of outpatient standardized order sets with embedded clinical decision support tools.
View Article and Find Full Text PDFED observation unit-based delayed comfort care pathway for ED patients on life support.
Am J Emerg Med
January 2025
Departments of Emergency Medicine and Critical Care Medicine, Stanford Health Care, 900 Welch Road, Palo Alto, CA 94304, USA.
Background: Critically ill ED patients on life support may undergo transition to comfort care as decided by the surrogate decision maker. When several hours are needed for loved ones to arrive and say farewell before initiating comfort care ("delayed comfort care"), these patients require prolonged ED stays or costly intensive care unit (ICU) admissions.
Methods: A novel ED observation unit (EDOU)-based delayed comfort care pathway for ED patients on invasive mechanical ventilation and/or vasopressors was created in 2013 at Stanford Hospital.
COVID-19 and Mental Distress and Well-Being Among Older People: A Gender Analysis in the First and Last Year of the Pandemic and in the Post-Pandemic Period.
Geriatrics (Basel)
January 2025
Department of Clinical Psychology, Psychobiology, and Methodology, Universidad de La Laguna, 38200 San Cristobal de La Laguna, Spain.
The Coronavirus disease 2019 (COVID-19) pandemic seriously threatened the health and well-being of the population. This study aims to investigate the relevance of the COVID-19 pandemic on the stress, mental distress, and well-being of older people in Spain. The design was quantitative repeated cross-sectional.
View Article and Find Full Text PDFTurkish adaptation and psychometric evaluation of the Grief Impairment Scale.
Death Stud
January 2025
Necmettin Erbakan University, Konya, Turkey.
ABSRACTGrief usually proceeds in a normal course, but sometimes it may become dysfunctional. So psychometrically robust assessments are needed to identify abnormal grief. This study aimed to adapt the Grief Impairment Scale to Turkish and explore its psychometric properties with a sample of 364 bereaved adults.
View Article and Find Full Text PDFTrauma Survivors Network: history and evolution of a program empowering survivors and families impacted by traumatic injury.
Trauma Surg Acute Care Open
January 2025
Past President, ATS Board of Directors, American Trauma Society, Falls Church, Virginia, USA.
The Trauma Survivors Network (TSN), a program of the American Trauma Society (ATS), has a unique history spanning decades with a vision to continue expanding and strengthening services to support survivors and families impacted by traumatic injury. Since the COVID-19 pandemic, the ATS has adapted TSN services to provide both virtual and in-person services for trauma survivors, increasing equity and inclusion for many survivors to access TSN services for the first time. The recent policy changes in the American College of Surgeons Committee on Trauma provide an impetus for the TSN to grow and expand services in support of a diverse group of trauma survivors and their loved ones.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!