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Managing COVID-19-related Mental Distress for People with High and Very High Support Needs

Advice for Managing the Covid-19 Outbreak and the Associated Factors of Mental Distress for People with Intellectual Disability and Autism Spectrum Disorder

Persons with Intellectual Disability (ID) and/or low-functioning Autism Spectrum Disorder (ASD) are among those populations most vulnerable to the factors of mental distress as related to the COVID-19 pandemic. This is due to several factors including multi-morbidity, low levels of health literacy, low compliance with complex hygiene rules, and reliance on other people for care.

Physical multi-morbidity includes endocrine diseases, hypertension, respiratory problems, cancer and other conditions associated with a higher risk for SARS-CoV-2 Acute Respiratory Distress Syndrome and other COVID-19 complications.

Research on previous respiratory viral infections, including H1N1 and RSV, suggests that persons with genetic syndromes including ID and/or ASD (i.e. Down syndrome) are more likely to develop complications and require hospitalisation than the general population.

Persons with ID/ASD also show a very high rate of psychiatric disorders, with an overall lifetime prevalence up to 44% or even higher when ID and ASD co-occur. Anxiety disorders and affective disorders are the most common mental ill-health conditions. Symptoms presentation is often quite different from that of the general population, especially in persons with low or absent verbal communication skills, who may only be able to express themselves through changes in behaviour. Thus, unidentified psychiatric co-morbidity is also very high, with prevalence rates that have been estimated to exceed 50%, even in specialised support settings. Physical and mental multi-morbidity is higher than rates reported in the general population and starts at an earlier age.

The probability of environmental and social changes associated with the pandemic and the measures adopted to contain its spread (i.e lockdown) causing psychological distress, or even psychopathological features, is particularly high for persons with ID/ASD. This is due to their often limited ability to understand or communicate, as well as their strong need of routine/sameness and low adaptive skills.

In Italy, where COVID-19 had a great rapid spread immediately after Wuhan, the CREA (Research and Clinical Centre) unit of Misericordia di Firenze (Florence, Italy) and the Italian Society for Neurodevelopmental Disorders (special section of the Italian Society of Psychiatry) promptly set up a panel of experts and self-advocates to respond to these issues. They recognised the need to start a Delphi process aimed at providing persons with ID/ASD and their families with the most useful advice to deal with these pandemic-related risks. After four Delphi rounds, stable results were reached and included in a first document titled “Advice for managing the COVID-19 outbreak and the associated factors of mental distress for people with intellectual disability and autism spectrum disorder with high and very high support needs - version 1.4”, which was published on 16 March 2020 and immediately endorsed by some of the most relevant national scientific and family associations. In a few days it was also translated into German and Dutch for use in some regions of North Europe. The release of version 1.4 was followed by a large volume of feedback and requests, which were used together with the new needs related to the evolution of the epidemic, to create version 1.5. The new tips contained here took only three Delphi rounds to be produced.

The version 1.5 was translated into English and endorsed by the Working Groups on Intellectual Disability and Autism Spectrum Disorder of the World Psychiatric Association Action Plan 2021-23, which also constituted an advisory board for further implementation and intercontinental dissemination. The group includes Marco O. Bertelli, Maria Luisa Scattoni, Afzal Javed, Muhammad Waqar Azeem, Luis Salvador-Carulla, Kerim M. Munir, and Ashok Roy.

The document includes accessible information on COVID-19 such as hygiene rules, anxiety crisis management, overcoming barriers, mental vulnerability, counteracting the risks of isolation and drastic changes in everyday life, protective environments, and recommendations for caregivers. So far, it has been translated into the following languages:

· Arabic

· Chinese

· Dutch

· German

· Hindi

· Russian & Belarusians

· Taiwanese

· Urdu

These can be downloaded from the WPA's COVID-19 Resource Library

Original document prepared by:

Marco O. Bertelli, Daniela Scuticchio, Annamaria Bianco, Elisabetta F. Buonaguro, Fiorenzo Laghi, Filippo Ghelma, Michele Rossi, Giulia Vannucchi, Roberto Cavagnola, Giuseppe Chiodelli, Serafino Corti, Mauro Leoni, Silvia Gusso, Corrado Cappa, Luca Filighera, Silvia Simone, Mattia Zunino, Raffaella Belotti, Francesca Perrone, Rita Di Sarro, Roberto Keller, Maurizio Arduino, Natascia Brondino, Pierluigi Politi, Michele Boschetto, Marino Lupi, Eluisa Lo Presti, Pasqualina Pace, Marco Armellini, Jacopo Santambrogio, Corrado Barbui, Davide Papola, Patrizia Ceccarani, Maria Luisa Scattoni.

On behalf of:

SIDiN (Italian Society for Neurodevelopmental Disorders) in collaboration with CREA (Research anc Clinical Centre), San Sebastiano Foundation, ASMED (Association for the Study of Medical Assistance for People, with Disabilities), Italian Federation for Prader-Willi syndrome, ANGSA (National Association of Parents of Persons with Autism), Onlus, FIA (Italian Foundation for Autism), and the Working Groups on Intellectual Disability and Autism Spectrum Disorder of the World Psychiatric Association

Article Author: Marco O. Bertelli CREA (Centro Ricerca e Ambulatori), Fondazione San Sebastiano della Misericordia di, Firenze, Firenze

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