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

Background: 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. Aim: 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. Study Design: 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. Findings: 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. Conclusions: 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. Relevance to Clinical Practice: 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.