Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that leads to severe functional decline and death, imposing significant physical, emotional, and ethical burdens on patients and healthcare providers. With no curative treatment, ALS care depends on the early and sustained integration of palliative care to address complex and evolving needs. Nurses play a pivotal role in this process, yet their lived experiences remain underexplored. This study aimed to synthesize qualitative evidence on nurses’ experiences in ALS care, with a focus on emotional, ethical, and palliative dimensions. Methods: A meta-synthesis of qualitative studies was conducted using Sandelowski and Barroso’s four-step method. A systematic search across five databases identified eight studies exploring nurses’ experiences with ALS care. Thematic synthesis was applied to extract overarching patterns. Results: Three core themes emerged: (1) Relational Dimension: From challenges to empathy and Trust and mistrust—emphasizing communication barriers and the value of relational trust; (2) Care Dimension: Competence, Palliative care needs, and Rewarding complexity—highlighting the emotional demands of care, the need for timely palliative integration, and the professional meaning derived from ALS care; (3) Ethical Dimension: Medical interventionism and Patient-centered values—exploring dilemmas around life-sustaining treatments, patient autonomy, and end-of-life decisions. Conclusion: Nurses in ALS care face complex emotional and ethical challenges that call for strong institutional support and palliative training. Enhancing palliative care integration from diagnosis, alongside targeted education and psychological support, is crucial to improving care quality and sustaining the well-being of both patients and nurses.
Relational, Ethical, and Care Challenges in ALS: A Systematic Review and Qualitative Metasynthesis of Nurses’ Perspectives
Dellafiore F.
2025-01-01
Abstract
Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that leads to severe functional decline and death, imposing significant physical, emotional, and ethical burdens on patients and healthcare providers. With no curative treatment, ALS care depends on the early and sustained integration of palliative care to address complex and evolving needs. Nurses play a pivotal role in this process, yet their lived experiences remain underexplored. This study aimed to synthesize qualitative evidence on nurses’ experiences in ALS care, with a focus on emotional, ethical, and palliative dimensions. Methods: A meta-synthesis of qualitative studies was conducted using Sandelowski and Barroso’s four-step method. A systematic search across five databases identified eight studies exploring nurses’ experiences with ALS care. Thematic synthesis was applied to extract overarching patterns. Results: Three core themes emerged: (1) Relational Dimension: From challenges to empathy and Trust and mistrust—emphasizing communication barriers and the value of relational trust; (2) Care Dimension: Competence, Palliative care needs, and Rewarding complexity—highlighting the emotional demands of care, the need for timely palliative integration, and the professional meaning derived from ALS care; (3) Ethical Dimension: Medical interventionism and Patient-centered values—exploring dilemmas around life-sustaining treatments, patient autonomy, and end-of-life decisions. Conclusion: Nurses in ALS care face complex emotional and ethical challenges that call for strong institutional support and palliative training. Enhancing palliative care integration from diagnosis, alongside targeted education and psychological support, is crucial to improving care quality and sustaining the well-being of both patients and nurses.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
