Information demands from families of children with Autism Spectrum Disorder

Abstract

Objective: to identify the information demands of families of children with Autism Spectrum Disorder. Method: this is a qualitative study conducted through semi-structured and audio-recorded interviews with 55 family members, in the states of Paraná, Ceará, and Macapá, between September 2018 and September 2019. Thematic category analysis and Qualitative Data Analysis Software resources were used for data organization. Results: it was identified that families need information regarding the characteristics of Autism Spectrum Disorder (definition, cause, possibility of cure, prognosis and the probability of having another child with Autism Spectrum Disorder); child’s routine and behavior; future rights and expectations. Final considerations: information demands are relevant to support professionals, health managers and other services in health care organization to support families of children with autism.

Exploring Challenges and Needs of Parents Providing Care to Children with Autism Spectrum Disorders: A Qualitative Study

“…At first, the diagnosis of this disorder leaves parents confused and stressed as they are faced with an unknown and unexpected situation. In this regard, the presence of specialists to guide parents and provide them with information about this disorder is essential (2). Meanwhile, limited knowledge and awareness of the community and professionals, and especially parents, about ASD leads to negative consequences for the families of these children (18,19), limiting the opportunity for early interventions and improving the child's development.…”

“…Autism spectrum disorders (ASD) are common neurodevelopmental disorders characterized by a triad of impairment in reciprocal social interactions, verbal and nonverbal communication deficits, and repetitive and stereotyped behaviors (1). This disorder is identified by changes in the development of the infant's brain during the first years of life, affecting a person's behavior and how she/he interacts and communicate with others (2). Studies show that ASD affects 1-1.5% of the population of the world (3).…”

“…Parents face many obstacles and challenges in accessing health services (9). Access to information about the disorder, treatments, services, and the health care network can help these parents cope with the situation and the diagnosis (2). Although new and appro-priate strategies are being planned in developed countries to provide health care services to fulfill the needs of children with ASD, developing countries face a rise in the incidence of ASD, where there is very inadequate information about the needs and problems of parents caring for children with autism (10).…”

Cuidado à pessoa com transtorno do espectro do autismo e sua família em pronto atendimento

“…Isso se deve ao fato de que o autismo consiste em um transtorno caracterizado por déficits na interação social, na comunicação e no comportamento que se expressam de maneiras e intensidade diferentes de indivíduo para indivíduo, sendo as formas mais intensas as mais conhecidas pelos profissionais. (8) Assim como em alguns estudos, (7,9) parte dos profissionais não conseguiram formular um conceito do transtorno ou não souberam reconhecer e definir suas características. Apesar disso, a maioria descreveu, ao menos, um aspecto do TEA, revelando um raso conhecimento sobre o autismo.…”

Cross-Cultural Comparison of the Contexts Associated with Emotional Outbursts

“…Thus, it is possible that individuals from relatively interdependent cultures such as Brazil may be more likely to suppress their distress in response to antecedents, especially within contexts that involve other people (e.g., in public), thereby increasing the likelihood of emotional outbursts manifesting via the Perceived Safety pathway. Additionally, families of individuals with ASD in Brazil have reported a lack of support to socially integrate individuals with ASD into the wider community; and inadequate measures to minimise the exposure to intimidating environments for individuals with ASD (Gomes et al, 2015 ; Weissheimer et al, 2021 ). Consequently, these two factors may contribute to the lack of perceived safety in contexts involving the wider community (Dammeyer & Chapman, 2018 ), further contributing to the experience of distress in these environments.…”