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People with autism and intellectual disabilities, much like individuals with typical development, share a fundamental right and aspiration to realise their own life projects. However, this natural pursuit is uniquely challenging for individuals with autism and intellectual disabilities due to their communication and adaptive hurdles. This growing need has prompted the development of a specific procedure for crafting life projects geared toward enhancing their quality of life. In the present work, we will describe the six key steps and the corresponding assessment, support, and verification tools essential for establishing and actualising the life project for individuals with disabilities, as conceptualised by the Italian Society of Neurodevelopmental Disorders (SIDIN). We will start by delineating diverse preference and value assessment procedures, showcasing an array of tools tailored to accommodate the distinct characteristics of adaptive and communicative functioning in individuals with disabilities. Following this, we will provide a succinct overview of support needs assessment tools. Subsequently, we will introduce the Ecological Life Balance, which serves as an integrative tool for harmonising various assessment systems. We will propose methods for defining existential goals that prioritise quality of life and suggest strategies for implementing support plans. Lastly, we will delve into the methodologies for monitoring and verifying outcomes in the final section.
Assuntos
Transtorno Autístico , Pessoas com Deficiência , Deficiência Intelectual , Humanos , Qualidade de Vida , ComunicaçãoRESUMO
This research aims to examine access to medical treatment during the COVID-19 pandemic for people living with disabilities. During the COVID-19 pandemic, the practical and ethical problems of allocating limited medical resources such as intensive care unit beds and ventilators became critical. Although different countries have proposed different guidelines to manage this emergency, these proposed criteria do not sufficiently consider people living with disabilities. People living with disabilities are therefore at a higher risk of exclusion from medical treatments as physicians tend to assume they have poor quality of life, whereas access to medical treatment should be based on several parameters, including clinical data and prognosis. However, the COVID-19 pandemic shifts the medical paradigm from person-centred medicine to community-centred medicine, challenging the main ethical theories. We reviewed the main guidelines and recommendations for resources allocation and examined their position toward persons with disabilities. Based on our findings, we propose criteria for not discriminating against people with disabilities in allocating resources. The shift from person-centred to community-centred medicine offers opportunities but also risks sacrificing the most vulnerable people. The principle of reasonable accommodation must always be considered to guarantee the rights of persons with disabilities.
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Supporting individuals with NDD is extremely demanding, with significant exposure to critical contexts and events, and painful ongoing experiences. Stress and burnout condition is a main concern with growing interest in research, despite the lack of consensus on theoretical explanatory models and modification standards.The paper provides an up-to-date review of risk factors and involved processes, and presents evidence-based procedures and protocols to implement effective preventive actions addressing both organizational and individual factors. The aim is to offer a global understanding of the subject and offer examples of practical plans to increase the impact on the quality of life of clients and staff members.
Assuntos
Pessoal de Saúde/psicologia , Transtornos do Neurodesenvolvimento/reabilitação , Estresse Psicológico/psicologia , Adulto , Transtorno do Espectro Autista/reabilitação , Esgotamento Profissional/epidemiologia , Esgotamento Profissional/psicologia , Criança , Humanos , Satisfação no Emprego , Qualidade de Vida , Estresse Psicológico/epidemiologiaRESUMO
For some years, the term "project of life" has become widely used in the field of neurodevelopmental disorders, and, at the same time, it has begun to make its way in many social and health planning documents. However, beyond its relatively widespread use, this term does not yet possess an adequate and shared frame of the main underlying decision-making processes. In particular, there is a need to identify the crucial questions for orienting the choice of goals within the adolescent transition, which represents the complex hinge between childhood and adulthood. Moreover, adulthood, which is often completely devoid of culturally and socially shared references, is still critical precisely because of the lack of future direction prompts usually represented by the stages of development. In this case, the themes of quality of life functioning as a guiding compass appear pertinent and much more relevant. The present contribution is, therefore, an attempt to present, in a unitary manner, the decision-making processes and questions at the basis of a construct of "project of life" shared within the scientific and associative communities.
Assuntos
Transtornos do Neurodesenvolvimento/psicologia , Transtornos do Neurodesenvolvimento/reabilitação , Planejamento de Assistência ao Paciente/organização & administração , Qualidade de Vida , Adulto , Criança , HumanosRESUMO
Objectives: Ciliary neurotrophic factor (CNTF) is a neurotrophin which could signal neuronal suffering and at the same time acts as a neuroprotective agent. In the present study we aimed to evaluate CNTF serum levels in autism spectrum disorders (ASDs). In fact, considering the role of CNTF as a neuronal damage signal and the role of neuroinflammation, excito-inhibitory imbalance and excitotoxicity in the pathogenesis of ASDs, a possible alteration of CNTF in ASDs could be hypothesised.Methods: We recruited 23 individuals with ASDs and intellectual disability (ID), 20 ID subjects and 26 typical adults. A complete medical and psychopathological characterisation of the participants was performed. CNTF serum levels were measured with ELISA.Results: CNTF serum levels were significantly higher in the ASD + ID group compared to ID (p < .001) or typically developed subjects (p < .001).Conclusions: CNTF may be considered as a potential biomarker candidate for ASDs in the context of severe ID. Our results support the hypothesis of neurotrophic imbalance in ASDs.