Introduction: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder, and the first manifestations can be observed during childhood. Some impairments arise later than others and affect verbal communication, social interactions, limited interest or activities, as well as stereotyped behaviors, with different grades of severity: the concept of "Spectrum" gives a clue about the different nuances that this condition can take. The average worldwide prevalence of autism is 0.65%, and The American Centers for Disease Control (CDC) estimates that 1 in 36 children at age 8 has autism spectrum disorder. Individuals on the spectrum often suffer from sensory stimulation disorders, experiencing hypo- or hyper-reactivity to sensory stimuli. Lights, sounds, colors, shapes, tactile stimuli, smells, and thermal comfort in the built environment can strongly influence these users’ well-being, resulting in a sensory overload. Individuals with ASD attend healthcare facilities two to three times more than neurotypical individuals on average, but there are still no official guidelines or regulations defining design standards to ensure that healthcare spaces meet their sensory needs and reduce their discomfort during diagnostic and therapeutic processes. Research Objective: The PhD research aims at providing a set of design strategies for autism-friendly healthcare facilities, serving as a guide for designers and decision-makers in the realization of new buildings or the adaptation of existing spaces. The definition of these strategies should be grounded on the analysis of the experience of large populations of individuals with autism and their caregivers in a co-design approach, to provide evidence-based and experience-based design strategies. Methodology: The research has been developed through 8 different phases. After having studied the sensory disorders of individuals with ASD, a systematic review of the scientific literature analyzed the existing studies that proposed design strategies and post-occupancy evaluation tools. Two web-based, multilingual surveys integrating items from clinical scales were created to investigate the experience of caregivers and independent individuals on the spectrum in healthcare facilities, while workshops and surveys collected the experiences of healthcare staff. 1845 caregivers and 1035 independent adults with ASD across Italy and the US participated in the study. Data analysis provided validation of existing design strategies and the creation of new ones, but also determined which are the most impactful spaces and space elements on the wellbeing of users with autism. The final set of design strategies has been validated by experts and applied to 7 healthcare facilities in Italy and the US. Research outcomes: The PhD research resulted in a validated and tested set of design strategies to build autism-friendly healthcare facilities, which can also support the adaptation of existing specialized clinics for neurodevelopmental disorders, children’s hospitals, or general hospitals. The strategies have been developed for outpatient clinics, including entrance area, check-in area, connections, waiting area, and observation/consultation/therapy rooms, but their flexibility allows for their future adoption also for different spaces and facilities. For the first time, an healthcare design study included large populations of final users to provide experience-based design strategies and evidence-based priorities of interventions for autism-friendly spaces.
Introduzione: Il disturbo dello spettro autistico (ASD) è un disturbo del neurosviluppo, le cui prime manifestazioni possono essere osservate durante l'infanzia. Alcuni disturbi insorgono più tardi di altri e riguardano la comunicazione verbale, le interazioni sociali, gli interessi o attività limitate, nonché i comportamenti stereotipati, con diversi gradi di gravità: il concetto di "spettro" dà un'idea delle diverse sfumature che questa condizione può assumere. La prevalenza media mondiale dell'autismo è dello 0,65% e l’American Centers for Disease Control (CDC) stima che 1 bambino su 36 all'età di 8 anni sia affetto da un disturbo dello spettro autistico. I soggetti dello spettro autistico soffrono spesso di disturbi della stimolazione sensoriale, sperimentando un'ipo- o iper-reattività agli stimoli sensoriali. Luci, suoni, colori, forme, stimoli tattili, odori e comfort termico nell'ambiente costruito possono influenzare fortemente il benessere di questi utenti, provocando un sovraccarico sensoriale. Le persone con ASD frequentano le strutture sanitarie in media da due a tre volte di più rispetto alle persone neurotipiche, ma non esistono ancora linee guida o normative ufficiali che definiscano gli standard di progettazione per garantire che gli spazi sanitari soddisfino le loro esigenze sensoriali e riducano il loro disagio durante i processi diagnostici e terapeutici. Obiettivo della ricerca: La ricerca di dottorato mira a fornire una serie di strategie di progettazione per strutture sanitarie a misura di autismo, che fungano da guida per i progettisti e i decision-makers nella realizzazione di nuovi edifici o nell'adattamento di spazi esistenti. La definizione di queste strategie dovrebbe basarsi sull'analisi dell'esperienza di ampie popolazioni di individui con autismo e dei loro caregiver in un approccio di co-design, per fornire strategie di progettazione basate sull'evidenza (evidence-based) e sull'esperienza (experience-based). Metodologia: La ricerca è stata sviluppata attraverso 8 diverse fasi. Dopo aver studiato i disturbi sensoriali delle persone con ASD, una revisione sistematica della letteratura scientifica ha analizzato gli studi esistenti che proponevano strategie di progettazione e strumenti di valutazione post-occupazionale. Sono stati creati due sondaggi online multilingue che integrano elementi di scale cliniche per indagare l'esperienza dei caregiver e di individui autonomi dello spettro nelle strutture sanitarie, mentre i workshop e un questionario hanno raccolto le esperienze del personale sanitario. Hanno partecipato allo studio 1845 caregiver e 1035 adulti autonomi con ASD in Italia e negli Stati Uniti. L'analisi dei dati ha permesso di convalidare le strategie di progettazione esistenti e di crearne di nuove, ma anche di determinare quali sono gli spazi e gli elementi spaziali di maggiore impatto sul benessere degli utenti con autismo. Il set finale di strategie di progettazione è stato convalidato da esperti e applicato a 7 strutture sanitarie in Italia e negli Stati Uniti. Risultati della ricerca: La ricerca di dottorato ha prodotto una serie di strategie di progettazione convalidate e testate per la costruzione di strutture sanitarie autism-friendly, ma che possono anche supportare l'adattamento di cliniche specializzate in disturbi del neurosviluppo, ospedali pediatrici o ospedali generali già esistenti. Le strategie sono state sviluppate per aree ambulatoriali, tra cui l'area di ingresso, l'area di prenotazione e accettazione, i collegamenti, l'area di attesa e gli ambulatori, ma la loro flessibilità ne consente l'adozione futura anche per spazi e strutture differenti. Per la prima volta, uno studio nell’ambito della progettazione sanitaria ha incluso ampie popolazioni di utenti finali per fornire strategie di progettazione basate sull'esperienza e priorità di intervento basate sull'evidenza.
experience- and evidence-based design strategies for autism-friendly healthcare facilities
MORGANTI, ALESSANDRO
2022/2023
Abstract
Introduction: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder, and the first manifestations can be observed during childhood. Some impairments arise later than others and affect verbal communication, social interactions, limited interest or activities, as well as stereotyped behaviors, with different grades of severity: the concept of "Spectrum" gives a clue about the different nuances that this condition can take. The average worldwide prevalence of autism is 0.65%, and The American Centers for Disease Control (CDC) estimates that 1 in 36 children at age 8 has autism spectrum disorder. Individuals on the spectrum often suffer from sensory stimulation disorders, experiencing hypo- or hyper-reactivity to sensory stimuli. Lights, sounds, colors, shapes, tactile stimuli, smells, and thermal comfort in the built environment can strongly influence these users’ well-being, resulting in a sensory overload. Individuals with ASD attend healthcare facilities two to three times more than neurotypical individuals on average, but there are still no official guidelines or regulations defining design standards to ensure that healthcare spaces meet their sensory needs and reduce their discomfort during diagnostic and therapeutic processes. Research Objective: The PhD research aims at providing a set of design strategies for autism-friendly healthcare facilities, serving as a guide for designers and decision-makers in the realization of new buildings or the adaptation of existing spaces. The definition of these strategies should be grounded on the analysis of the experience of large populations of individuals with autism and their caregivers in a co-design approach, to provide evidence-based and experience-based design strategies. Methodology: The research has been developed through 8 different phases. After having studied the sensory disorders of individuals with ASD, a systematic review of the scientific literature analyzed the existing studies that proposed design strategies and post-occupancy evaluation tools. Two web-based, multilingual surveys integrating items from clinical scales were created to investigate the experience of caregivers and independent individuals on the spectrum in healthcare facilities, while workshops and surveys collected the experiences of healthcare staff. 1845 caregivers and 1035 independent adults with ASD across Italy and the US participated in the study. Data analysis provided validation of existing design strategies and the creation of new ones, but also determined which are the most impactful spaces and space elements on the wellbeing of users with autism. The final set of design strategies has been validated by experts and applied to 7 healthcare facilities in Italy and the US. Research outcomes: The PhD research resulted in a validated and tested set of design strategies to build autism-friendly healthcare facilities, which can also support the adaptation of existing specialized clinics for neurodevelopmental disorders, children’s hospitals, or general hospitals. The strategies have been developed for outpatient clinics, including entrance area, check-in area, connections, waiting area, and observation/consultation/therapy rooms, but their flexibility allows for their future adoption also for different spaces and facilities. For the first time, an healthcare design study included large populations of final users to provide experience-based design strategies and evidence-based priorities of interventions for autism-friendly spaces.| File | Dimensione | Formato | |
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https://hdl.handle.net/10589/206663