Information demands from families of children with Autism Spectrum Disorder

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.


INTRODUCTION
Epidemiological data have shown that one in 54 eight-year-old children has Autism Spectrum Disorder (ASD) (1) . ASD is characterized by changes in infant brain development that occur in the first years of life, mainly affecting communication, relationship/ interaction with people and behavior (2) . Children with ASD present a group of clinical signs, generating a new living condition for the family due to the need to manage children's needs (3) .
Faced with the challenges after the ASD diagnosis, the family seeks information about the health care network, professionals with experience in caring for children with the disorder, service providers that provide intervention/therapies (4) , support networks, social services, among others (5) . Access to information about the disorder, treatments and services and health care network can help families of children with ASD in coping with this new situation.
The provision of information to families is essential to ensure the proper long-term management the disease and assist in making decisions about necessary treatments/therapies. This enables them to actively participate in children's therapy, chosen together with a professional team (4) . Thus, support for these families has been the focus of several professionals, institutions, and policies (3)(4)(5) .
Despite this, it is still frequent to report families having difficulty receiving information, as this support is perceived as restricted (4) . There is dissatisfaction with the information received from health professionals, especially during the diagnosis period. Communication barriers are referred to, such as the use of medical jargon, insufficient, inaccurate information and little opportunity for discussion (6) .
Brazilian studies have addressed that, in the family experience, there is an information deficit (7)(8) ; however, this fact has not been explored in relation to the type of information required. Considering this scenario, this study aimed to identify the information demands of families of children with ASD. This study can assist professionals, institutions and managers in the organization of information support, supporting them in decision-making regarding caring for a person with ASD.

OBJECTIVE
To identify the information demands of families of children with Autism Spectrum Disorder.

Ethical aspects
The research was conducted in accordance with the standards recommended by Resolution 466/12 of the Brazilian National Health Council (Conselho Nacional de Saúde), approved by a Research Ethics Committee, with opinion in favor of conducting the research. To ensure the confidentiality of all participants, we used the following encoding: acronym of the state where the research was conducted, followed by the sequential number of the interview.

Type of study
This is a descriptive research with qualitative approach. The Consolidated Criteria for Reporting a Qualitative Research (COREQ) was used according to applicability.

Methodological procedures
Fifty-five relatives of children with ASD participated in the study. The inclusion criteria were: 1) family of children aged four to ten years; 2) living in the same house; 3) caring for their child. The selection of these criteria is justified for the following reasons: first, the child's age was taken into account due to the period in which diagnosis commonly occurs and delimitation of ten years to include only relatives of children, since the focus in this study was not on families of adolescents.
As a second criterion, the family experience in the coexistence of care was considered, allowing participants to contribute to the objective of this study. The exclusion criterion used was being a minor. There was refusal of participation by six family members in Ceará and one in Paraná. There was no withdrawal of participation.

Study setting
The research was conducted in health and educational care institutions in three cities in different states, 21 interviews in Paraná -five in an Association of Parents and Friends of The Exceptional (APAE -Associação de Pais e Amigos dos Excepcionais) and 16 in a Center for Pediatric Neurology; 22 in Ceará, six in an APAE, two in a Psychosocial Care Center (Centro de Atenção Psicossocial) and 14 in a Rehabilitation Center; 12 in Amapá, in a Center for Early Childhood Education.

Data source
Data collection occurred through a one-to-one, semi-structured and audio-recorded interview with 55 family members. At each data collection site, the researchers knew the care flow to enable a personal invitation to the families. The sample was intentional and delimited by data saturation, i.e., when the objectives and understanding of the studied phenomenon are achieved.

Data collection and organization
The interviews were conducted between September 2018 and September 2019, guided by introductory questions about the information demands of families. Sociodemographic data were collected regarding family members (age, sex, years of study, kinship with child and family income) and children (age, sex and time of diagnosis of ASD). Two adaptations were made in the data collection guide after two pre-tests performed with family members in a collection center in Paraná. Such adaptations were made for the guide to present understandable language to the respondent.
The researchers who conducted the interviews in the three states are students of an undergraduate nursing course, nurses holding either a master's or doctoral degree. They were trained by a researcher/professor with experience in qualitative studies. The interviews, with average duration of 20 minutes, were 8 of

Information demands from families of children with Autism Spectrum Disorder
Weissheimer G, Mazza VA, Santana JM, Ruthes VBTNM, Freitas CASL. recorded in audio through a digital recorder and transcribed in Microsoft Office Word ® format. During the interview, participants were offered the possibility of receiving the transcribed interview; those who accepted, received them by e-mail or message from WhatsApp, according to preference. None of them requested a change in the content of the interview after reading.

Data analysis
The interviews were interpreted according to the thematic category analysis technique (9) . Data organization and preparation for analysis, reading of data and coding in chunks/text segments, groupings of text into categories were carried out, which were established based on similarity between the data found. The Qualitative Data Analysis Software was used to assist in data organization. The researcher interpreted the words and phrases of the interviews; from this, we used clippings of the registration units, constituting the codes, which were categorized.
Next, 275 codes originated in the interviews were analyzed, which were included in the categories as follows: 55 (20%) represented the category characteristics of ASD; 98 (36%), behavior children with ASD; 98 (36%), rights of children with ASD; 24 (9%), future of children with ASD.
In relation to children with ASD, the mean age was six years and 69% (n=38) were male. Thus, 27% (n=15) lived with ASD in a period of up to one year; 29% (n=16) were two to three years old; 25% (n=14) were four to five years old; 9% (n=5) were six to seven years old; 5% (n=3) did not know.
The following are thematic categories and subcategories as well as participants' statements. In the first category, referring to the characteristics of ASD, family members reported ignorance about ASD, its cause, signs and symptoms, the possibility of cure and the risk of having another child with the disorder. In the third category, regarding the rights of children with ASD, several aspects were identified, such as lack of knowledge about what are the rights of a person with ASD; a reference on non-functionality of laws; coping with discrimination of society against the rights of children with ASD; on how to have access to the health and education rights of children with ASD; issues about how to access social rights, especially Continued Installment Benefits (BPC -Benefícios de Prestação Continuada), transportation vouchers and vacancy for the disabled.

You have a right that I know, but every day is a fight, because what is in the Law is not guaranteed. (Amapá-13)
The Law is beautiful, wonderful, but in practice it does not work. (Amapá-13 In the fourth category, about the future of children with ASD, it is perceived that there is concern and hope in all statements regarding biological changes in children. Likewise, there is a future perspective on social development and independence. On the other hand, there is concern about who will care for the children in the absence of their parents.

Information demands from families of children with Autism Spectrum Disorder
Weissheimer G, Mazza VA, Santana JM, Ruthes VBTNM, Freitas CASL.

DISCUSSION
During the ASD diagnosis process, questions arise about the disorder and other aspects involving children with this condition. This is a confusing and stressful time for families, as they are in the middle of something unknown (10) . In this context, professionals become essential to advise families on the necessary information. It is important that parents are aware of the characteristics and aspects that involve ASD, in order to focus on searching for resources for children (4) and necessary interventions, depending on the different community contexts in which families live (11) . As in this study, in others, it is pointed out that families would like to know information involving children with ASD (12)(13) . There is no specific treatment for the disorder so far, but there are several therapies that help promote child development (16) . There is research showing that ASD may be caused by genetic, environmental and/or adversity factors in the gestational period (14)(15)(16)(17) .
Among identical twin siblings, the risk is 60 to 90%; on the other hand, among non-identical twins, the chance is 0 to 30% risk for having the disorder (17) . In families with paternal siblings, the chances of occurrence increase by 23.34%; in the case of families with maternal siblings, the chances increase by 28.32% in a second child. In firstdegree maternal cousins, the possibility is 13.79%; in first-degree paternal cousins, the possibilities increase by 13.55% (18) .
It is important that families receive information about ASD signals, which involve deficits in communication, social interaction, behavior, and sensory changes (19) . Behavior involves body movements, use of objects, and restricted or repetitive speeches (19) . Sensory interests can cause children to be attracted to certain aspects such as texture, smell, taste, vision and sounds, and not in the function of a particular object (16)(17)(18)(19)(20) . Commonly, adhering to routines is inflexible; children may be interested in specific toys or objects, stay for long periods using the same toys or performing the same activity (19) .
The characteristics described above may cause children to present some different behaviors. For instance, hypersensitivity to sound can generate crises in the presence of loud sound/ noise. It is important for the family to understand what triggers disruptive behaviors (21) and stereotyping (22) .
It is necessary to know how to deal with child anxiety, social (23) and sensory skill development (21) , accompany children in their leisure activities (21)(22) and help them improve communication (21) . Moreover, they need to know how to help children in activities of daily living, such as rest, sleep, self-care (21) , and food (20) .
Children may have difficulty understanding facial expressions, so it is difficult to keep in memory an expression that is associated with a certain emotion. They are rigid in their learning style and may have difficulty transferring learning to other situations (16) . Knowing this information is important for those who care for children, because families commonly experience stressful situations because they cannot cope or understand child behavior (21)(22) .
To meet children's demands of everyday life, families need information about rights, public policies, legislations (21) and social subsidies (24) that can assist them. At first, it is essential to understand that, in Brazil, a person with ASD is considered, for legal purposes, disabled. Thus, they enjoy the rights of other people and those protected for disabled people, provided for in special laws.
People with disabilities are those who have long-term physical, mental, intellectual or sensory impairments, which, in interaction with one or more barriers, can obstruct their full and effective participation in society on equal terms with other people (25) .
According to the literature and data of this research, families have doubts about how to access the health care network. This involves the need to obtain information about institutions that provide specific therapies or treatments (26) and services for family counseling (12) . On the other hand, parents are often overwhelmed and confused by the amount of options for ASD treatments according to the research they carry out autonomously. Thus, they need services that instruct them (27) .
The legislation that regulates health promotion, protection and recovery, as well as organization and functioning of health services in Brazil, consists of Law 8,080 of September 19, 1990 (28) . Recently, Law 13,146 of July 6, 2015 reinforces some rights to the health of people with disabilities (25) , while Law 12,764 of December 27, 2012 reaffirms the right to health for people with ASD from diagnosis to rehabilitation with specialized services (29) .
The Guidelines for Attention to the Rehabilitation of People with ASD provide for monitoring by a specialized center (3) . This guideline establishes individualized service. The health team articulates with the social and support network such as social assistance services or others that can help children and their family. Such articulations also involve referrals to the education network (3) .
Educational resources are important (23) and parents need to know about the special educational programs available that are suitable for their children (12) . Law 13,146, of July 6, 2015, establishes the rights to education and vocational training for people with disabilities (25) . Education is a right guaranteed at all levels of learning throughout life, in order to achieve the maximum development of their talents and physical, sensory, intellectual and social skills according to their characteristics, interests, and learning needs.
People with ASD are guaranteed social assistance by the Federal Constitution of 1988, Organic Law on Social Assistance (30) . There are social programs and benefits for low-income families and others specific to people with disabilities. This often raises doubts, because people are unable to access some benefits because they are not classified as low-income. registration fees in public tenders, interstate free pass, fee exemption for municipal urban transport (31) , BPC, among others. The specific rights for people with disabilities are: exemption of Tax on Manufactured Products (IPI); exemption of Tax on Financial Operations (IOF); exemption of Tax on the Circulation of Goods and on Services of Interstate and Intermunicipal Transportation and Communication (ICMS); exemption of Tax on Property of Motor Vehicles (IPVA).
Additionally, disabled people have the right to housing, including protected residence and priority in home ownership (25) ; discount on companion airfare (32) ; identity card with ASD symbol (33)(34) ; priority in service lines (25) ; seats reserved for public transportation for people with disabilities (35) ; preference in parking lot; priority in receiving income tax refunds; priority in the procedural process, judicial and administrative procedures in which they are a party or interested in all acts and diligences (25) .
It is important to know the rights. Thus, professionals who assist these families are essential for guidance and indication of where and how to get them. In addition to the rights mentioned above, physical and moral integrity and the right to free development of the personality are provided by Law as well as for anyone in society (29) . In line with this, ASD awareness campaigns can help society to better understand this disorder.
Many families receive negative comments from people in the community when children have a bad mood or present stereotypes in a public place (2) . In this research, participants reported that they would like to know strategies that would help them to explain the disorder to other people and that would promote awareness and integration of the community in relation to ASD. It was observed that social acceptance and support from family, friends and community are considered important aspects for parents of children with ASD (21) , as many still suffer prejudice.
One of the families' perspectives is in relation to children's acceptance in society about issues related to work, employment, profession and their independence (36)(37) . They express expectations about the possibility of taking a higher education course (38) and having independence (39) .
A study assessed the general long-term characteristics of people with ASD in relation to work and independence. In this research, 15 studies conducted in the United Kingdom, Scandinavia, North America and Japan were analyzed, involving 828 people with ASD, who were followed from childhood to adolescence or adulthood (40) .
Such characteristics were classified as follows: "good", in 19.7% of people, indicating that they were able to work, but required some support in daily life; "Intermediate", in 31.1%, denoting that they had some degree of independence and although they demanded support and supervision, they did not need specialized support for care at home; "Bad" or "very bad", in 47.7% of people, i.e., requiring special supervision, high-level support at home or high-level hospital care (40) . As difficult as it may be, many families need to set aside much of their expectations for their child and keep the future in mind as children grow and develop (16) .
Children's prognosis is not limited, it depends on the characteristics of each individual. In a study carried out in Italy with 110 parents/relatives of people with ASD -ranging from 8.1 to 28 years old (average of 20.6 years old) -83 participants were male and 27 female, being able to check some aspects related to the prognosis. The signs/symptoms improved in 81.5% of cases. In 10.9%, it was found that there was no change, and in 7.6%, symptoms worsened. Verbal communication was present in 66%, absent in 15.1%; in 18.9%, an ability to imitate and gesture communication was perceived (39) .
There are policies that establish some of the aspects mentioned by families with regard to ensuring the insertion of these people in society in relation to study, work, employment and guaranteeing their rights (25) . Therefore, it is important that families are educated to seek the rights of children and exercise children's independence for the future. Despite the resources, many families need more support to know how to access and seek available services, in order to promote a satisfactory prognosis and children's independence (41)(42) .
In addition to knowing the rights, it is important that families know how to seek them when they are not accessible. It is verified that there are precarious organizational and operational structures for obtaining health, education and labor market services in relation to what the Law determines. Law making is not enough to effectively guarantee the rights of families (8,43) . Despite this, it is essential that families are educated and that, in the absence of rights, seek the respective state/municipal resources to obtain them (8,43) . The social participation of people with disabilities in decision-making processes related to policies is still fragile, and it is extremely important that families empower themselves for participation and social control, with a view to effective access to their rights (44) .

Study limitations
In this study, families' information needs were raised, but there was no classification of information demands according to the time elapsed after the diagnosis. It is suggested that this time may demonstrate differences in information needs. Thus, it is considered that future studies can explore this issue.

Contributions to nursing, health, and public policies
Access to safe and reliable information is essential so that families can manage children's needs, leaving it to professionals, health managers and other areas to provide assistance so that these needs are met.

FINAL CONSIDERATIONS
Family's demands for information are relevant to support professionals, health managers and other services in the organization of health, social and educational care to support families of children with ASD.