Introduction

Estimates show that 1 in 59 children has Autism Spectrum Disorder (ASD). These are data from the Monitoring Network in the United States, between 2000 and 2014 ¹. In Brazil, there are few epidemiological studies on the prevalence of ASD and discrepancies among some studies ^2-4.

ASD is a human neuro-developmental disorder characterized by impaired social interaction (verbal and non-verbal), communication, and restricted and/or repetitive behavior patterns⁵. Developmental alterations are perceived by the families based on some signs, such as delayed speech or language, stereotyped behaviors, and the child’s lack of interaction with other individuals ⁶.

The families are faced with something unknown and unexpected ⁷. Many of them face many obstacles and challenges in the health services to seek a child diagnosis ⁶, and they also need different types of support to take care of the child. Several studies show^{(8, 9)} the need for the families to obtain information about available resources⁸ and professionals, and express difficulties in accessing information and assistance resources⁹.

The provision of information is part of health care and aims to improve the family’s knowledge and skills to influence attitudes and behaviors aiming at maintaining or improving the health of the family members¹⁰. It is an important resource to empower them for care, as well as to assist them in the discussion with the professionals about the conduct to be taken regarding the child treatment and their rights, among others ^11,12.

Thus, the importance is evidenced of providing information to the families, as well as guidance on the use of resources available in different platforms accessible to the community, which are increasingly part of people’s daily lives.

To promote informational support for the families, it becomes relevant to identify the evidence on their information needs to develop strategies to help them. Thus, the aim is to identify what information is necessary for the families of children with ASD.

This study contributes to the Nursing course as it offers a theoretical basis to help the professionals in the area to provide information in an appropriate way in the care process, managing the family’s expectations about the usefulness of the information available from different sources.

Method

This is an integrative literature review, whose method allows for the synthesis, in a systematic and orderly way, of several published research studies on a topic, with the purpose of generating new results, deepening knowledge, and identifying possible gaps to be investigated about this topic¹³. The study followed the six stages of Ganong’s methodology ¹⁴, presented below.

1). Definition of the research question: What evidence is available on the information needed by the families of children with ASD? For this, the researchers used an adaptation from the PICO strategy (P - Population; I - Intervention; C - Comparator; O - Outcomes) to PIC, where: P - Population; I - Phenomenon of Interest; C - Context. Thus, P - Families of children with ASD; I - Need for information; C - Context of daily family life.

2). Establishment of the inclusion/exclusion or sample selection criteria: studies that addressed family members of children with ASD; that specified the necessary information for these family members to help them in the daily care of the child; published between January 2014 and February 2020; qualitative and quantitative research studies available in full and free of charge in Spanish, English and Portuguese, in the Scopus, PubMed (US National Library of Medicine National Institutes Database Search of Health), CINAHL (Cumulative Index to Nursing and Allied Health Literature), Web of Science, Eric (Education Resources Information Center), and PsycINFO (American Psychological Association) databases.

The period of publication of the articles was defined to encompass more recent publications, from the last six years. Table 1 illustrates the search strategies carried out in the databases. Different databases were selected as the topic covers different areas of knowledge, such as Education, Psychology, Nursing, and multidisciplinary health sectors.

The exclusion criteria included repeated publications in the databases, dissertations, theses, review articles, conference reports, congresses, book chapters, books, letters, errata, experience reports, and editorials. Review articles were excluded because the aim was to include primary/empirical research studies. Reviews are characterized as secondary research studies.

After identifying the studies in the databases and considering the eligibility criteria, two independent reviewers read the titles and abstracts simultaneously, in order to select the studies for the review. In cases of lack of consensus for the inclusion or not of the study, a third reviewer was consulted, which was not necessary; then, the pre-selected studies were read in full to define their inclusion or exclusion (Figure 1).

Source: Research data, own elaboration.

Figure 1 Flowchart of the process for the identification, selection and inclusion of the studies based on the PRISMA recommendation ¹⁵  

3) Data collection/extraction: The included studies were organized using an instrument predefined by the researchers with identification information such as the database, title, authors, journal, year of publication, language, country of the study, objective of the study, and methodological approach.

4) Analysis: The extracted data were classified according to thematic similarity and organized into categories. In this analysis, the methodology proposed by Bardin¹⁶(2010) was used, consisting of analysis organization, floating reading of publications, coding, and thematic categorization¹⁶. The thematic analysis and categorization were performed by the researchers. They also organized and prepared data for analysis, reading, and coding into text segments, text groupings in categories according to the similarity between the data found.

5) Interpretation and discussion of the results.

6) Presentation of the integrative review.

Result

The sample consisted of 41 studies, and their characterization is shown in Table 2. As regards the year of publication of the articles: 1 (2.4 %) in 2014; 11 (26.2 %) in 2015; 9 (21.95 %) in 2016; 4 (9.75 %) in 2017; 9 (21.95 %) in 2018; 6 (14.6 %) in 2019 and 1 (2.4 %) in 2020, as shown in Figure 2. All were conducted in foreign countries: 17 (41.52 %) in the United States; 5 (12.2 %) in Australia; 3 (7.3 %) in Canada and Sweden; 2 (4.9 %) in China, the United Kingdom and Ireland; in Croatia, Spain, France, Greece, Italy, Russia and Turkey, 1 (2.4 %) article was published. Regarding the methodology, 23 (56.1 %) articles used a qualitative approach, 11 (26.8 %) used a quantitative approach, and 7 (17.1 %) used a quantitative and qualitative approach. With regard to the language of the studies, 40 (97.6 %) are in English and 1 (2.4 %) in Spanish.

Source: Research data, own elaboration.

Figure 2 Number of selected articles per year of publication (2020) 

From the thematic analysis of the data, two categories and respective subcategories emerged: “Need for information” and “information support sources of the families”, according to Figure 3.

Source: Research data.

Figure 3 Categories and subcategories  

Discussion

The families’ search for information begins with the perception that there is something different in the child’s development ²⁰. After the diagnosis is confirmed, the families experience insecurity related to the lack of knowledge about ASD and the available treatments; the difficulty of dealing with the child’s behavior; the need to make decisions about treatments they do not know ^{24,28,29,51,56}; and, in some cases, they have difficulty accessing resources, support, and information ³⁹.

The family needs support from the family members, the professionals, and the community. However, in the studies reports were found of the lack of skills and welcoming of the professionals, mentioned by the families that need time for counseling, more information, to be heard, and to know how/where to look for resources ^{19,20,28,41,52,53}. Inadequate information can have a negative effect on the families, either by the inaccessibility of the information or by the limitations of the professionals in relation to the knowledge and management of ASD, effects described by the families in several studies ^25,52,53. There are references to limitations in assisting the family members, such as the overload of the professionals - due to the demand for daily care - that end up limiting the time for counseling ^(25,47.

The limited awareness on ASD by the community and the professionals is still a current aspect, which can have important consequences for the families ⁵¹. Among other aspects, the professionals not valuing the information reported by the families can lead to a delay in the diagnosis. This means wasted opportunities for early interventions that can make a difference in the child’s development, mainly related to brain plasticity in early life ⁵⁷.

Limited information forces the families to face community stigmas, especially when the children with ASD present stereotypes, crises, or tantrums in public. The families are judged because people are unaware of the disorder and of how the person with ASD perceives the world and lives in society. This leads many parents to avoid going out and change their life routines in order to reduce unpleasant moments in the community ⁵⁶.

Although various studies show that some families have difficulties in accessing information, others obtained positive advice from the health professionals and from the school ⁽¹², who were considered important sources of information before and after the diagnosis of ASD ^31,44, with the support received ⁴⁴, and the guidelines to assist in the decisions regarding the treatments ²⁵. Access to information is indispensable because it allows parents to feel safe and empowered to make decisions ²⁹ regarding the treatment, the interventions, the services, and the future ⁵⁵.

Many parents report that health professionals and formal institutions provide a feeling of trust and support to the family members who want honest information ²⁷ regarding the child’s ASD and the indication of appropriate treatments ²⁵. In addition to the professionals, many families use other means to obtain information about the disorder and to assist them in making decisions ^{(39, 54)}, such as other parents of children with ASD, family members, friends, and neighbors. The parents value support groups as a source of guidance, as their participants experience the same situation and provide mutual support continuously ^{(11,25,30,31,52}.

The search for peers in the same situation refers to the fact that these families have a better understanding of what the others are feeling, unlike other people such as their own family, who are unable or do not have the knowledge to help them ⁵⁴. Therefore, people who experience the same condition and who have already gone through several ways of seeking information and services become the hope of obtaining the ability to learn to deal with and face such situation ^51,55.

The families seek informational support by means of the social media, they interconnect through Facebook, Twitter, Instagram, blogs, and podcasts, among others. Through this connection, they can provide a sense of belonging, mutual support, and a way to understand what is happening ⁵⁸.

With the movement of the digital age and the increasingly frequent and easily accessible use of the Internet, it has become a source of search for information on health. The reasons for its use are the abundance of information, the easy access to this resource ^{(28, 29)} and the possibility to access the Internet according to the family’s time availability ²⁹. Other resources, such as participation in workshops and seminars, are used in order to know the services available to assist children with ASD³⁷, as a type of training for parents⁴⁷ and of obtaining information to guide decision making on necessary interventions.

Despite the availability of information to the families, there is a concern about its reliability. The families’ emotional vulnerability to information sources is an important aspect to be discussed in contemporary society due to the increase in information available online ⁵¹.

The families are exposed to unreliable online content; additionally, there is emotional vulnerability regarding the search for a cure for ASD. This can make the family members trust unqualified contents that promise such a cure, which, so far, does not exist. The lack of evidence to prove the cause of and the cure for the disorder may justify the reason why parents seek so much information and alternative treatments. Although there are many levels of scientific credibility, an essential aspect for some parents is to understand reliable and unreliable content⁵³. Thus, the challenge for the professionals is to train the parents so that they can search for information in reliable databases.

Some families can be vulnerable to persuasive rhetorics of insecure information; however, not all families are influenced. With the movement of evidence-based practice, reliable studies are shown compared to those without validation. However, even evidence-based practices are vulnerable to commercialization ⁵⁵.

There are some sources of support for the families, such as the provision of online content aimed at the parents (with a language proper for this population) and of educational content developed and made available on websites of scientifically recognized institutions, such as Autism Speaks (United States and partnerships with other countries), the Raising Children Network (Australia), and Sick Kids (Canada), among others.

With the use of technologies, contents can be shared during a webinar, which can be presented and later stored, so it can be watched by people who were unable to attend it live. A webinar can be used to present an educational program to a geographically broad group. For example, in rural areas, it can be difficult to organize a family education program because distance and time can prevent families from participating. However, as long as they have access to the Internet, they can participate in the program at their homes and have the opportunity to interact with the host and with other participants⁵⁸.

A study carried out in Canada showed that, in a health search conducted on YouTube, there were several videos developed by nurses and other health professionals with useful and reliable information for the families. Podcasts are another way to share popular and useful content. A podcast is an audio file that people can download to their cell phones and then listen to it while performing activities of daily living. Podcasts are usually short and people can subscribe to receive new podcasts directly, depending on the topic they want. Similar to these, there are also vodcasts ⁵⁸.

Thus, a trend is perceived in the use of information freely accessible by the community. This creates a demand for professionals and managers to educate the community on how to access reliable information. In addition, it leads to the need to rethink the practice and to develop strategies that aim to minimize possible risks of accessing unsafe information that “uninstruct” the families and harm the health of children with ASD.

Conclusions

This research evidenced information patterns required by the families about ASD, the child’s behavior and rights, and the indication of information sources. With this data, the professionals can create or improve formal information support programs. Formal support involves programs and policies that are part of the assistance to families in different areas of health, social, and educational care.

The results provide a basis for managers in strategies for public policies aimed at this population in order to guarantee their rights. In addition, they also allow them to reflect on strategies to train the formal support sources so that they can manage the families’ needs.

In view of the various sources accessed by the family members and the reference to a large amount of information in these sources, there is a need to condense them into a usable format without families feeling overwhelmed. They could be condensed into a printed or online format in a specific place of access by the families. In addition, there were references to information of a questionable quality.

Considering the families’ vulnerability to accessing insecure information, there are challenges for the professional area in terms of availing and guiding secure and modeled information for the families given the trends in the digital age. In this context, the professionals are encouraged to teach the families to make a critical judgment in the selection of the sources and of the type of information accessed.

The limitations of this study included samples of children with conditions which are comorbid to ASD, since the information needs may be different for this group. Although studies involving adolescents and adults were excluded, many of those included had adolescents in their samples, thus some topics like sexuality emerged.

It is believed that the demand for information can be different in each stage of the life of children with ASD, as well as of their family members. Therefore, for future studies, it is suggested to investigate what these demands would be and their impact on those involved.