Information needs for parents of children with autism spectrum disorder: a qualitative studyABSTRACT
Objective: To map the different information needs of parents of children with autism spectrum disorder about their health condition in virtual communities.
Method: This qualitative study covers 2022 and 2023, using a thematic content analysis approach and social network analysis in virtual media. The study included three Brazilian virtual communities aimed at parents of children with autism.
Results: The posts were organized into “Assessment of children with suspected autism” and “Interventions for children with autism”.
Final considerations: The primary information needs are related to children’s rights, behavior, and signs of autism. The study contributes to forming public health, educational, and social policies and recognizing virtual communities with the potential to strengthen care, prevention, and health promotion actions to support the families of autistic children.
DESCRIPTORS:
Autism Spectrum Disorder; Family; Access to Information; Internet access; Social Support.
HIGHLIGHTS
1. Parents of children with autism need information support.
2. Children's rights stood out among parents.
3. Virtual communities complement teaching and learning for parents.
4. Virtual communities reveal gaps in autism care.
RESUMO
Objetivo: mapear as diferentes necessidades de informação de pais de crianças com transtorno do espectro autista sobre a condição de saúde em comunidades virtuais.
Método: trata-se de pesquisa qualitativa, com abordagem de análise de conteúdo temática e análise de rede social em mídia virtual, abrangendo os anos de 2022 e 2023. O estudo compreendeu três comunidades virtuais brasileiras, voltadas para pais de crianças com autismo.
Resultados: as postagens foram organizadas em duas categorias: “Avaliação da criança com suspeita de autismo” e “Intervenções voltadas à criança com autismo”.
Considerações finais: as principais necessidades informacionais estão relacionadas com os direitos da criança, o comportamento e os sinais do autismo. O estudo contribui na formação de políticas públicas de saúde, educacionais e sociais e no reconhecimento das comunidades virtuais com potencial para fortalecer ações de cuidado, prevenção e promoção da saúde no suporte às famílias de crianças com autismo.
DESCRITORES:
Transtorno do Espectro Autista; Família; Acesso à Informação; Acesso à Internet; Apoio Social.
HIGHLIGHTS
1. Pais de crianças com autismo precisam de suporte informacional.
2. Necessidades sobre direitos dos filhos destacaram-se entre os pais.
3. Comunidades virtuais complementam ensino e aprendizagem para os pais.
4. Comunidades virtuais revelam lacunas no cuidado assistencial do autismo.
RESUMEN
Objetivo: mapear las diferentes necesidades de información de los padres de niños con trastorno del espectro autista sobre su estado de salud en comunidades virtuales.
Método: Se trata de un estudio cualitativo, utilizando un enfoque de análisis de contenido temático y análisis de redes sociales en medios virtuales, que abarca los años 2022 y 2023. El estudio comprendió tres comunidades virtuales brasileñas dirigidas a padres de niños con autismo.
Resultados: las entradas se organizaron en dos categorías: “Evaluación de niños con sospecha de autismo” e “Intervenciones para niños con autismo”.
Consideraciones finales: las principales necesidades de información están relacionadas con los derechos de los niños, el comportamiento y los signos del autismo. El estudio contribuye a la formación de políticas públicas de salud, educativas y sociales y al reconocimiento de comunidades virtuales con potencial para fortalecer las acciones de atención, prevención y promoción de la salud para apoyar a las familias de niños con autismo.
DESCRIPTORES:
Trastorno del Espectro Autista; Familia; Acceso a la Información; Acceso a Internet; Apoyo Social.
HIGHLIGHTS
1. Los padres de niños con autismo necesitan apoyo informativo.
2. Las necesidades relativas a los derechos de los niños destacaron entre los padres.
3. Las comunidades virtuales complementan la enseñanza y el aprendizaje de los padres.
4. Las comunidades virtuales revelan lagunas en la atención al autismo.
INTRODUCTION
The number of people with Autism Spectrum Disorder (ASD) has increased considerably in recent decades. According to the Autism and Developmental Disabilities Monitoring (ADDM) Network report published by the US Centers for Disease Control and Prevention (CDC), the prevalence of ASD among 8-year-olds was 27.6 per 1,000 in 2020, which corresponds to approximately one in 36 children. This figure represents an increase compared to the 2018 study, which indicated a prevalence of 23.0 per 1,000 (1 in 44), marking an increase of around 20% in two years1. ASD is characterized by alterations in children’s brain development that affect social interaction, communication, and behaviour2.
Identification of ASD not only changes the child’s standard of living but also has a direct impact on family dynamics. Faced with the need to reorganize their routine and adapt to new demands, families face daily challenges and need an informational support network to support their decisions about care3-4.
In this context, the American Academy of Pediatrics (AAP) points out that the management of ASD involves both assessment and intervention. Assessment takes place in two stages: screening, level 1, to identify risk, or level 2, for confirmation, followed by diagnostic investigation. Once the diagnosis has been confirmed, different intervention strategies are recommended, including pharmacological and non-pharmacological approaches, for which families need to be adequately advised of the benefits and risks5.
In addition to professional assistance, the search for information in support networks has proved fundamental for parents of children with ASD. Among the main spaces offering support are virtual communities, which allow for exchanging information, socializing with other families in the same situation, and sharing strategies for dealing with daily challenges6.
Despite the importance of the support network, studies show significant gaps in parents’ knowledge about ASD, especially during the diagnosis period. These difficulties are exacerbated by the impersonal attitude of some health professionals, who often fail to establish a proper dialog and provide fragmented information. As a result, families feel helpless and without guidance on how to deal with conditions7-9.
Faced with this reality, many parents turn to informal sources for information about the disorder, with virtual communities being one of the leading alternatives. On these platforms, they find emotional support and quick explanations about symptoms, therapies, medication side effects, and recommended professionals. Easy access to this information helps families feel better prepared to face the challenges of daily care4. In addition to searching for information, participating in virtual groups allows parents to acquire shared experiences, strengthening their confidence in making decisions and managing the condition10.
Considering this, this study aimed to map the different information needs of parents of children with Autism Spectrum Disorder about their health condition in virtual communities.
METHOD
Type of study
This qualitative study uses a thematic content analysis approach and social network analysis in virtual media, which used the Consolidated criteria for reporting qualitative research (COREQ) to guide the reporting of findings11. Thematic content analysis emphasizes using categories to describe a group’s conceptions, experiences, or attitudes towards a phenomenon, allowing the data to be qualified in the light of one or more theoretical concepts12.
Social network analysis involves mapping the interactions between independent units, making behavior patterns and interactions in specific groups visible in a virtual environment (in this case, Facebook®).
Research team and reflexivity
The research team consisted of professionals with experience in qualitative research and public health, ensuring familiarity with the methodologies adopted. Reflexive practices were adopted throughout the data collection and analysis process, ensuring that the team’s involvement and perceptions did not unduly influence the results. No relationship was established between the researchers and the participants since the posts analyzed were publicly accessible, which minimized interpretation bias.
Selection of participants
The study participants were considered indirectly since the analysis focuses on public posts in Facebook® virtual communities related to autism spectrum disorder. There was no active recruitment or direct interaction between the researchers and the members of the groups.
Study scenario
The study scenario comprised the three virtual communities with the most participants and posts on the Facebook® platform aimed at parents of children with autism spectrum disorder. The following criteria included the groups: open communities (with no need for the researcher to be identified, to allow for dynamic observation and data collection), with public posts in Portuguese to discuss ASD, with the highest number of participants and posts. Communities of commercial or institutional origin were excluded.
Data collection
The data was collected manually from the posts made in the selected communities covering 2022 and 2023. The posts were extracted and organized in spreadsheets, forming a textual corpus that served as the basis for the analysis. Information such as the number of reactions and shares was not considered. This was because identifying the content of the posts was deemed sufficient to recognize the themes in which the information needs of parents of children with ASD about their health condition were apparent in the virtual communities studied. Therefore, the focus was on analyzing the textual content of the posts, enabling the identification of themes related to parents’ information requirements about ASD.
The data was organized using thematic content analysis, which aims to identify patterns or trends, also understood as themes, relevant to the description and understanding of a data set. To this end, the identification process includes segmentation, categorization, synthesis, and reconstruction stages. The themes identified through these procedures are essential dimensions or aspects of the data analyzed, indicating patterns of response, meaning, or idea13. As the analysis included all the posts in the defined period, data saturation was not a criterion for stopping the collection.
Data analysis
The thematic analysis began with reading and familiarization with the collected data. The publications were reviewed and categorized based on an AAP theoretical model on care strategies for children with autism, resulting in two main categories: “Assessment of children with suspected autism” and “Interventions for children with autism.”
When a post contained more than one type of message, the excerpts were separated and coded according to their purpose and content. To identify information needs, only messages whose purpose was coded as ‘doubt’ were analyzed since these directly reflect the participants’ information demands. This strategy was adopted because an analysis of the ‘information needs’ construct in literature14 shows that needs are generally expressed as questions. Messages with other purposes, such as reports or guidance, were disregarded for this purpose.
Ethical aspects
This study followed Resolution 510/2016 of the National Health Council, which exempts approval by an Ethics Committee for research with public data and without identifying participants. The posts analyzed were taken from open virtual communities, ensuring no private or identifiable information was used. The speeches were paraphrased without altering their meaning to preserve the authors’ anonymity. The source of the posts was cited, ensuring methodological integrity and compliance with ethical guidelines.
RESULTS
A total of 2,144 messages were identified for coding. Of these, 1,372 were directly related to doubts about the disorder, representing around 64% of the data collected. The 1,372 classified posts were organized into two categories: a) Assessment of children with suspected autism; b) Interventions for children with autism. Four subcategories emerged from the first category: “Characteristics of the disorder”, “Behavior of the child with ASD”, “Signs of ASD,” and “Diagnosis of the child with ASD”, totaling 50.4% of the textual corpus. The second category gave rise to three subcategories: “Rights of children with ASD”, “Access to resources”, and “Prospects”, totaling 49.6% of the text corpus (Chart 1).
Topics in which information needs on autism spectrum disorder were identified in the virtual communities. Iguatu, CE, Brazil, 2024
As shown in Chart 2, the virtual communities need to identify the sub-themes associated with each ASD topic.
Themes and sub-themes in which information needs on autism spectrum disorder were identified in the virtual communities. Iguatu, CE, Brazil, 2024
In the posts, the participants accessed the virtual environment to express their doubts, possibly solve them, or obtain some kind of guidance on how to proceed in caring for their children with ASD, especially considering that this condition significantly impacts family members’ routines. This can be seen in Chart 3.
Themes and posts about information needs on autism spectrum disorder identified in virtual communities. Iguatu, CE, Brazil, 2024
DISCUSSION
The first category dealt with the need for information on the “Assessment of the child with suspected autism”, made up of four subcategories, entitled “Characteristics of the disorder”, “Behavior of the child with ASD”, “Signs of ASD” and “Diagnosis of the child with ASD”, which refer to the need for information on specific aspects of the process of suspecting autism up to the discovery of the diagnosis itself, totaling 50.4% of the text corpus.
Concerning the characteristics of autism spectrum disorder, families should receive information about behavioral changes, manifested by mania, excessive attachment to routines, repetitive actions, a strong interest in specific things, and difficulty imagining; deficits in communication, characterized by repetitive use of language and difficulty initiating and maintaining a dialogue; deficits in social interactions, such as maintaining eye contact, understanding facial expressions, expressing emotions, and making friends; and sensory alterations, such as sensations of smells, tastes, textures, sounds, lights, and colours2,15.
Knowing this information is essential for the child’s family members, as they often experience stressful situations because they are unable to cope with or understand the development of children on the autism spectrum. Family members need to recognize what causes disruptive behavior, such as self-injury, aggression, and excessive stereotyping in children with ASD16.
After receiving a diagnosis of the disorder, the family members of these children feel helpless, distressed, and eager for information; they, therefore, need emotional and informational support to answer questions about the disorder and other aspects involving the child with this condition. To participate effectively in the child’s treatment, these parents require informational support regarding the educational role they should play17. In this context, professionals are key to encouraging families with the information they need to care for their children.
There is no cure for ASD and no specific drug treatment to date. Still, various intensive behavioral interventions have significantly improved the development of diagnosed children, especially when combined with early detection2. Scientific evidence suggests that ASD can be caused by genetic and environmental factors and/or stressful events during pregnancy2,15.
In this study, families and friends reported finding it difficult to accept their child’s behavior, which caused the family to become socially isolated. These families’ social isolation may be due to the population’s lack of understanding of the disorder, which often manifests itself through people’s discriminatory attitudes18. The stigma experienced may be related to lack of knowledge, judgment, rejection, and support. These situations happen at school, in the community, and with family and friends. Sensitization and awareness-raising work should also be focused on these places18.
The second category dealt with “Interventions for children with autism”. It gave rise to three subcategories: “Rights of children with ASD”, “Access to resources,” and “Prospects”, totaling 49.6% of the text corpus. This category dealt with elements relating to the moment after diagnosis and the implications for caring for children with autism.
The study revealed a significant number of questions regarding the rights of children with ASD. It is worth noting that, in Brazil, Federal Law No. 12,764, of December 27, 2012, determined that people with ASD are considered people with disabilities for all legal purposes, reiterating the right to health for people with ASD from diagnosis to rehabilitation with specialized services19.
The law deals with access to comprehensive health actions and services, including early diagnosis, multi-professional care, adequate nutrition/nutritional therapy, medication, and information to help diagnose and treat children with ASD. In addition, the same law deals with the right to access education and vocational training, housing, the job market, social security, and social assistance19.
Studies7,20 have shown that families have difficulties in accessing specialized health care services, as well as weaknesses in the implementation of public policies relating to the care of people with ASD and the line of care for people with ASD and their families in the SUS psychosocial care network. This directly interferes with the supply of trained professionals and comprehensive and adequate care for the individual and their family.
Due to this fragility, the journey between one service and another or between one city and another causes delays in diagnosis, the experience of various obstacles, and anxiety about the difficulties encountered20. These issues imply suffering for the family and the child’s prognosis. It is known that identifying the disorder and starting interventional measures early, such as behavioral therapies or sensory integration approaches, allows for a better developmental prognosis. This is mainly based on the needs of each child because the manifestations of ASD are different for each one21.
Parents need to know information about the educational resources available, especially the Brazilian Law for the Inclusion of People with Disabilities, Law No. 13.146, of July 6, 2015, which considers any refusal of enrollment by a public or private school to be a crime of discrimination and guarantees rights to vocational education for people with disabilities22.
The three most common themes among the participants’ questions were “Rights of children with ASD,” “Behavior of children with ASD,” and “Signs of ASD.” The topic of “Rights of children with ASD” was the predominant doubt among the participants in the virtual communities analyzed. The most prominent sub-theme was ‘Social programs and benefits,’ which discussed the difficulties faced in accessing the right to health and government social benefits.
This result may be related to the impact of the chronicity of ASD and the extent of its characteristics, which makes families resort to various health services and seek specialized multidisciplinary care4.
Financial support is an essential source of support for parents. The literature and the results of this study show that families have difficulties accessing social assistance resources; however, children with the disorder should be protected and ensured through programs and benefits aimed at children with ASD and low-income families, if applicable. The professionals who assist these families are part of the social support network and are significant sources of information and support to educate them23.
Families of autistic children seek information in the digital environment, including informal sources such as blogs, WhatsApp®, virtual communities and websites, which have been connecting individuals with common interests, functioning as spaces for exchanging information, demands and support among their users, and are also capable of influencing people’s daily lives and attitudes towards autism23. Freely available information raises concerns about its reliability and the extent to which families are critical when accessing this material. This context creates a new demand for society, as it is unknown what impact content from informal sources can have on people’s health.
This proposition is based on other antecedents, such as access to information and the Internet, given the predisposition to critical thinking due to not taking the reports transmitted in health institutions for granted.
This new demand on professionals and society refers to the need to learn how to guide family members’ research into the digital technologies available, advise them on how to evaluate the sites they are researching, safety issues, and the veracity of the information, and use this knowledge to improve healthcare and the professional patient relationship24.
In this context, nursing is gaining ground in caring for fragile children and families who need support and guidance in the direction to take3,17. It is worth pointing out that informal sources do not replace the recommendations of professionals qualified in the field of ASD but are intended to be consolidated as complementary sources in the teaching-learning process for parents of children with ASD.
Nursing professionals should pay attention to the uniqueness of individuals and their respective needs, providing comprehensive, quality care that meets all the care demands of autistic people and their families, helping to strengthen and expand relational ties. However, the support offered by professionals is fragmented, discontinuous, and disproportionate to covering all the family’s needs4,17.
The study’s limitation was that it did not analyze closed-group posts. Thus, the discussions analyzed may not represent the totality of interactions in the autism scenario.
FINAL CONSIDERATIONS
It was found that the primary information needs are related to children’s rights, behavior, and signs of ASD. It stands out that the information needed on the rights of children with ASD concentrated the most significant interest among parents in the virtual communities analyzed.
The virtual communities investigated proved to be essential support strategies, offering informational support to parents in the practical experience of caring for a child with ASD. Parents turned to these spaces to meet their information needs, which allowed them to identify the most relevant content, contributing to the decision-making process regarding their children’s health.
The study’s findings indicate that virtual communities can highlight gaps in care support and stand out as strategic sources of information for parents. These results suggest the need to develop interventions and public health, education, and social assistance policies that recognize this phenomenon, taking advantage of its potential to strengthen care, prevention, and health promotion actions. They also highlight the importance of organizing intersectoral initiatives to improve the coordination of support services for families of children with ASD.
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HOW TO REFERENCE THIS ARTICLE:
Alencar DC, Sousa Neto AR, Ibiapina ARS, de Oliveira JD. Information needs for parents of children with autism spectrum disorder: a qualitative study. Cogitare Enferm [Internet]. 2025 [cited “insert year, month and day”];30:e97345en. Available from: https://doi.org/10.1590/ce.v30i0.97345en
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Associate editor: Dra. Claudia Nery Teixeira Palombo
