Beyond the Monitor: Integrating Family Expertise Into ICU Care for Patients With Autism Spectrum Disorder

Autistic individuals admitted to intensive care units (ICUs) face unique challenges due to sensory sensitivities, communication barriers and behavioural complexities. In such high-acuity environments, families play a critical role in advocating for their loved ones' needs, yet their experiences remain underexplored-particularly in Middle Eastern contexts, where caregiving is deeply embedded in cultural and spiritual responsibilities.

To explore the lived experiences of family caregivers supporting autistic relatives during ICU admissions, with particular attention to communication challenges, emotional burdens, cultural values and ethical considerations.

This qualitative phenomenological study was conducted at a hospital in Saudi Arabia. In-depth, semi-structured interviews were carried out with family caregivers of autistic ICU patients. Thematic analysis was performed using Braun and Clarke's six-phase framework, and the study followed the Standards for Reporting Qualitative Research (SRQR) guidelines to ensure rigour and transparency.

In total, 14 caregivers were interviewed. Three major themes were identified: (1) Advocacy Amid Uncertainty, reflecting the emotional strain, communication barriers and isolation experienced by caregivers advocating in high-stress environments; (2) Negotiating Care Roles, capturing how families collaboratively distributed advocacy tasks while navigating generational and interpersonal tensions; and (3) Cultural and Ethical Framing, illustrating how deeply held values, religious beliefs and moral obligations shaped families' interpretations and decisions.

Families of autistic ICU patients navigate multifaceted roles as advocates, interpreters and emotional supports within a culturally complex landscape. Their experiences reflect a need for more inclusive, autism-informed and family-centred critical care practices that respect both neurodiversity and cultural context.

ICU nurses and interdisciplinary teams can improve care for autistic patients by engaging families as expert partners, adapting communication strategies and supporting culturally and spiritually grounded advocacy. Integrating family-informed care planning, reducing sensory overstimulation and honouring faith-based practices can enhance trust, emotional stability and care outcomes in neurodiverse ICU populations.