The emotional experiences of healthcare professionals working in amyotrophic lateral sclerosis: a systematic review

Healthcare professionals (HCPs) working with people living with amyotrophic lateral sclerosis (ALS) are often exposed to emotive circumstances including end of life care, trauma, loss, and death. Existing reviews have explored the emotional experiences of people living with ALS and their carers but have largely ignored healthcare staff and the impact of this work on them. This systematic review of qualitative research aims to explore the emotional experiences of and impact on HCPs working with people living with ALS using thematic synthesis (PROSPERO reference: CRD42025631749). Electronic databases were searched for journal articles and gray literature (Medline, Scopus, PsycINFO, Google Scholar, King's Fund Library Database, ProQuest Dissertations, Theses Global) for qualitative or mixed-methods studies exploring the emotional impact on HCPs working in ALS. Twelve studies were included, critically appraised, and analyzed. Four themes were identified. The emotional intensity due to the nature of ALS created challenges for HCPs, while they were also faced with absorbing the emotions of others. HCPs learned to balance their emotional involvement, and HCPs also described positive experiences and coping mechanisms. HCPs working in ALS experience multi-faceted emotional challenges, and they do describe positive emotional experiences within their roles. However, HCPs describe having few coping mechanisms and limited formal support systems in place to process the intense emotions or to guide their emotional involvement. The lack of support for staff may ultimately negatively affect patient care. There is an unmet demand for debriefing, supervision, and further training on how to deal with intense, distressing emotions.