Search

Purpose: To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Materials and methods: Qualitative study using the Interpretive Description methodology with Aaron Antonovsky's theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Results: Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities' administration of the service. Participants explained this by an experience of a sense of coherence. Conclusion: For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one's life by enhancing one's sense of coherence. IMPLICATIONS FOR REHABILITATION: Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness. Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations. To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them. [ABSTRACT FROM AUTHOR]

Background: In Swedish intensive care units, nine percent of patients do not survive despite receiving advanced life-sustaining treatments. As these patients transition to end-of-life care, ethical considerations may become paramount. Aim: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context. Research design: The study used a qualitative approach with an interpretive descriptive design. Research context and participants: Twenty critical care nurses from eight intensive care units in an urban region in Sweden were interviewed, predominately women with a median age of fifty-one years. Ethical considerations: This study was approved by The Swedish Ethics Review Authority. Findings: Critical care nurses described encountering ethical challenges when life-sustaining treatments persisted to patients with minimal survival prospects and when administering pain-relieving medications that could inadvertently hasten patients' deaths. Challenges also arose when patients expressed a desire to withdraw life-sustaining treatments despite the possibility of recovery, or when family members wanted to shield patients from information about a poor prognosis; these wishes occasionally conflicted with healthcare guidelines. The critical care nurses also encountered ethical challenges when caring for potential organ donors, highlighting the balance between organ preservation and maintaining patient dignity. Conclusion: Critical care nurses encountered ethical challenges when caring for patients at the end of life. They described issues ranging from life-sustaining treatments and administration of pain-relief, to patient preferences and organ donation considerations. Addressing these ethical challenges is essential for delivering compassionate person-centered care, and supporting family members during end-of-life care in an intensive care context. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodResultConclusionInterpretive description is a constructivist, flexible, qualitative research approach used to generate knowledge to inform practice in applied disciplines. Despite potential value for the speech-language pathology profession, there has been limited discussion of interpretive description in our field to date. The purpose of this scoping review was to describe how interpretive description has been used in speech-language pathology research. We asked: a) How and to what extent has interpretive description been used as a methodological framework for primary research in the field of SLP and b) what features of interpretive description are most salient in the speech-language pathology studies that have used interpretive description to date?Arksey and O’Malley’s (2005) methodological framework for scoping reviews was used. In May 2023, we searched five databases for peer-reviewed, primary research publications that reported using ID, were specific to speech-language pathology, and were written in English. Two researchers independently reviewed articles for inclusion. A third researcher provided input when consensus could not be reached.Nineteen articles met criteria. Data were extracted regarding article characteristics including use of theory, types of findings, clinical applicability, and description of disciplinary epistemology.Interpretive description is an emerging methodological framework in speech-language pathology research. Advantages and challenges of interpretive description for speech-language pathology are discussed. [ABSTRACT FROM AUTHOR]