Data Sheet 1_Humanizing medical care for individuals with autism spectrum disorder and their families: the experience of healthcare support in the Comprehensive Medical Care Unit for individuals with ASD (AMITEA).pdf

IntroductionAutism spectrum disorder (ASD) is a neurodevelopmental condition frequently associated with comorbidities and high support needs, posing significant challenges for the provision of patient-centered and humanized healthcare. Specialized healthcare programs have been developed to address these needs, yet evidence on user experiences within such models remains limited.
MethodsThis qualitative study explored the experiences of patients with ASD, caregivers, and healthcare professionals involved in AMITEA, a specialized public healthcare program in Madrid, Spain. Three focus groups (n = 24) were conducted following the Picker model of patient-centered care. Data were analyzed using a hermeneutic phenomenological approach, in accordance with COREQ guidelines.
ResultsParticipants reported several strengths of the AMITEA program, including respectful and personalized care, effective communication, emotional support, coordination across hospital services, and environmental adaptations tailored to sensory needs. Identified limitations included insufficient coordination beyond the specialized unit, limited resources, challenges during the transition to adulthood, barriers in referral processes, and a lack of ASD-specific training among professionals outside the program.
DiscussionThe findings highlight the value of specialized, patient-centered approaches for individuals with ASD, emphasizing the importance of personalized support, adapted environments, and professional training. Extending these practices beyond specialized units may contribute to improved equity, continuity, and humanization of care across healthcare systems.