Background: Research on staffed housing for people with intellectual disability has identified the challenges in achieving postitive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying.
Method: In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability.
Results: The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from 'being there' with individuals over those phases.
Download full-text PDF |
Source |
---|---|
http://dx.doi.org/10.1111/jar.12024 | DOI Listing |
Int J Qual Health Care
January 2025
NGO Mental Health Initiative, Lithuanian Tobacco and Alcohol Control Coalition, Stiklių g. 8, Vilnius LT-01131, Lithuania.
Lithuania ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2010 and started deinstitutionalization in 2014. This reform covers segregated social care institutions where persons with mental health conditions, psychosocial, and/or intellectual disabilities live. It aims to move away from institutional care and towards community-based services.
View Article and Find Full Text PDFJ Rehabil Assist Technol Eng
January 2025
Department of Allied Health Sciences, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Introduction: Traditionally, augmentative and alternative communication (AAC) user interface development has been a time-intensive process requiring expertise in software development, often excluding people who use AAC. This paper demonstrates the involvement of an end user in the design and testing of prototype AAC user interfaces (UIs) developed using a platform called the Open Source Design and Programmer Interface (OS-DPI).
Methods: Micro-analysis of in-person conversation involving an adult with intellectual and developmental disabilities who uses AAC revealed several problems related to accessing his aided AAC device.
Behav Neurol
January 2025
Department of Pediatric Psychology, College of Medicine, Balcalı Hospital, Çukurova University, Adana, Turkey.
According to the International League Against Epilepsy (ILAE) 2015 classification, status epilepticus (SE) is a seizure that lasts longer than 5 min or a frequency of more than one seizure within 5 min, without returning to a normal level of consciousness between episodes. In this study, we aimed to evaluate the prognostic factors of SE and compare our patients with those of patients treated internationally with the modified status epilepticus severity score (mSTESS) to determine the reliability of this scoring system. The medical records of patients aged 1 month-17 years with SE who were treated at Çukurova University-Balcalı Training and Research Hospital between September 2018 and September 2021 and who were followed in the intensive care unit were included in the study.
View Article and Find Full Text PDFPan Afr Med J
January 2025
College of Medicine, Qatar University, Doha, Qatar.
Patient engagement and shared decision-making (SDM) between patients and clinicians is the foundation of patient-centered care. It aims to reach a treatment option that fits the patient's preference and is guideline-concordant. We sought to evaluate the possible causes and outcomes of patient's non-guideline-concordant care choices.
View Article and Find Full Text PDFNat Commun
January 2025
Clinical Research Division, Fred Hutchinson Cancer Center, Seattle, WA, USA.
Gut microbiota disruptions after allogeneic hematopoietic cell transplantation (alloHCT) are associated with increased risk of acute graft-versus-host disease (aGVHD). We designed a randomized, double-blind placebo-controlled trial to test whether healthy-donor fecal microbiota transplantation (FMT) early after alloHCT reduces the incidence of severe aGVHD. Here, we report the results from the single-arm run-in phase which identified the best of 3 stool donors for the randomized phase.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!