"What about me? I'm supposed to be … superhuman?": exploring staff perspectives on how to deliver high quality psychological care for people living with amyotrophic lateral sclerosis.

OBJECTIVES

To explore healthcare professionals' experiences of providing informal psychological care in Amyotrophic Lateral Sclerosis (ALS) services.

METHODS

A qualitative focus group and interview study with 28 UK-based, ALS healthcare professionals. Data was analyzed using reflexive thematic analysis.

RESULTS

Healthcare professionals reported psychological distress in their roles arising from the intrinsic nature of ALS, alongside system factors and their needs as staff members. Participants identified critical needs for themselves to improve psychological care including: psychological skills training, clear role definition, understanding of specialist psychology and structured staff support. Participants identified patient needs as: support for informal carers, access to specialist psychology, clear and inclusive referral pathways, and having person-centered, tiered approaches to care delivery.

CONCLUSIONS

The psychological impact of ALS extends beyond patients and families to healthcare professionals, creating systemic challenges in care delivery. Effective psychological care in ALS requires a comprehensive approach that addresses not only the needs of individual patients but also staff and systemic issues. A distress loop exists where inadequate psychological services affect both staff wellbeing and care quality for patients and their families. Without addressing patient, staff, and service-level issues, people living with ALS and healthcare professionals will continue to experience preventable psychological distress.