Information behaviour of parents of children with autism spectrum disorder (ASD): a case study

Introduction

This research focuses on studying the information behaviour of family members of children with autism spectrum disorder (ASD). It is a case study for an organisation called Aletea which is in Montevideo, Uruguay. Aletea has a multidisciplinary technical team made up of parents with and without relatives with autism spectrum disorder, who support families on the long road that begins with the first warning signs and diagnosis and continues throughout life.

The National Institute of Neurological Disorders and Stroke website from the National Institutes of Health (NIH) of the United States, (2019) points out:

Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.

Generally, those who take care of people with autism spectrum disorder have many questions. It is a condition, not a disease, and has no cure, and thus there are many questions related to the origin of autism, its cause, and how to help face it in the best possible way. While great progress has been made in recent decades in terms of early diagnosis, and numerous studies to better understand the condition and possible routes of treatment, many questions remain to be answered.

The importance of investigating this issue is raised since autism spectrum disorder figures are increasing worldwide and as indicated by the WHO (2019):

It is estimated that worldwide one in 160 children has an ASD. This estimate represents an average figure, and reported prevalence varies substantially across studies. Some well-controlled studies have, however, reported figures that are substantially higher.

In Uruguay, this situation is similar in terms of figures and prevalence; and although there are no official figures or a study confirming them, as indicated by the Presidency of the Oriental Republic of Uruguay on its website (2015): ‘Around 30,000 and 35,000 Uruguayans have this disorder’.

Research on the quality of life of people with autism spectrum disorder is necessary, and this is also possible to know through the informational needs presented by their families, since it is they who will ensure the wellbeing of children with autism spectrum disorder. In the discipline of information behaviour, it is also necessary to contribute with new research worldwide, because as Gibson, Kaplan and Vardell (2017, p. 2189) point out: ‘Although parent information seeking is important to child welfare, few survey studies examine information seeking behaviors and source preference’.

Background

At the beginning of this research, a search was conducted of the possible background on this type of investigation with two variables: autism spectrum disorder and information behaviour. For this, a literature search was carried out in several databases. Of the results obtained, a large majority were focused on autism spectrum disorder, but did not contemplate information behaviour, but were more related to research from a medical, psychological or educational point of view; on the contrary, when the results focused on information behaviour or information needs, they were not linked to autism spectrum disorder, and within these, those that specifically refer to parents or relatives of people with autism were much lower.

In any case, it was possible to obtain some pertinent research on this topic, such as a paper by Amelia et al. (2017), where they focused on the process of searching for information that parents carry out related to the diagnosis, health, development, education and independent life of their children. They focused on how parents sought and shared the information obtained. Parents were found to be highly dependent on local sources of information, preferring them to non-local sources (such as Internet searches). Another relevant study is that of Martinović and Stričević (2016). These authors were interested in investigating what information needs the parents had before and at various stages after obtaining the diagnosis; what type and sources of information they used when conducting autism-related searches, simultaneously what parents do and what barriers they face when searching, selecting and evaluating information.

An important aspect of the present investigation was to know the feelings generated by the obstacles presented to parents when looking for and satisfying those information needs. This was also addressed by Grant, et al. (2015), who obtained results that show family members feel overwhelmed by the volume of information available, and the information they read regularly vary according to the stage in which they are positioned after diagnosis; parents go through a trial and error phase when choosing the best intervention for their children, and their confidence increased as they began to feel more familiar with their child's condition.

Parents feel the need to stay updated on progress in autism research and treatments, and what could be helpful for their children. This information search adds a demand on parents’ time who already have their hands full. However, it can also provide a coping mechanism, allowing parents to feel more informed and in control of their children's disabilities. (Mackintosh, et al., 2005).

In addition, there are complex tasks involved in families with an autism spectrum disorder diagnosis: raising a child who has communication problems, difficulties in social interaction, challenging behaviours, and an uncertain future. No one can safely tell parents what future awaits their children or what treatments they should take; and even when deciding what is best in terms of the quality of life and well-being of their children, parents face the abundance of information mostly without preparation to assess and discern what sources of information are of quality, providing reliable data on treatments, food, medications, educational interventions, etc. As a result, families feel the responsibility and pressure of being informed and prepared to face each of these problems in their daily lives, making what they consider to be the best decision.

Objectives

The objective of this study was to understand the different information needs that arise in the daily lives of family members of people with autism spectrum disorder, which may or may not influence decision-making regarding the wellbeing and quality of life of their loved ones. Thus to encourage the emergence of empirical research from information science on information behaviour and information practices regarding this and other disabilities, allowing the visibility of the challenges and obstacles the subjects face, in order to raise awareness in the entire community and to promote inclusion, tolerance and respect for this group.

Conceptual framework

The research is guided by the interpretivist paradigms of the last two decades of the information behaviour field; much of its theories and models have influenced the theoretical approach.

The contributions of constructionism and interpretation on the social construction of information and its access and appropriation by social communities have been motivating to analyse the informative behaviour of family members of children and young people with autism. Also, the social constructionist approach (Talja & Hartel, 2007; Talja & Nyce, 2015; Talja et al., 2005) contributed to the methodological approach taken for this study and the analysis of the narratives nterviewees.

The focus of this study relies on theories about the daily lives of family members, as ordinary people, facing various social and cultural situations. Savolainen's Everyday Life Information (ELIS) model made an important contribution by emphasising the kind of things that are done in daily life as part of routine and how they condition people in the use of information sources in their daily environments. (Savolainen 1995, 1999, 2002, 2004, 2005, 2008).

This research project adopted everyday life information seeking - ELIS approach since it is the one that would work best when considering the individuality and subjectivity of human beings, their social and cultural context; and in this particular case, the particularities that each one of the people with autism spectrum disorder possess, are also added, since it is a very broad spectrum where no diagnosis is exactly the same as another. Therefore, the information needs of those who care for and take care of these people can be varied and will be related to and immersed in aspects of their daily lives, routines and daily activities.

Methods

The methodology used is qualitative; a convenience sample and semi-structured open interviews with a guide of formulated questions were used. A total of twelve interviews with parents of children with autism spectrum disorder, who have a relationship with the Aletea organisation, were carried out in August 2019. All interviews were voice recorded with the prior consent of the interviewees, which facilitated the subsequent analysis of results. A critical incident technique was used, which allows respondents to recall when they last searched for information and the steps, they took to achieve the results of their search. Once the interviews were completed, they were transcribed to text and then the results of each interview were analysed using Excel spreadsheets. They were divided into blocks or sections and the responses were classified into categories (topics) and subcategories (sub-themes) for the presentation of results and conclusions.

Analysis of results

Analysis of interviews with parents of children with autism spectrum disorder

Sociodemographic data

As can be seen in the table, most respondents are mothers; half of them have completed full university studies and most of them work in a profession or job to earn an income; half of them perform their work activities within the health sector. Although the majority have more than one child, only one of the children has the diagnosis of autism spectrum disorder.

This data mostly shows parents get their children’s diagnosis before age 5.

Of the twelve interviewees, ten have their children currently enrolled at different levels. Several problems related to the education system were identified, a topic present in most of the answers. The most recurring problem occurs in getting the right educational centre for their children, since many places reject them due to their diagnosis.

The lack of interest of the teachers was observed or sometimes it was the children/young people themselves who did do not feel at ease, since in some cases, curricular adaptations are not made or children fail to integrate with their peers.

Questions about information behaviour

In this section there are conflicting positions regarding the use of the Internet and its reliability. There are parents who appreciate the existence of the Internet and the information available and others who do not agree with everything presented on the internet because there are no guarantees that everything presented online is true. Another feature is the negative perception that several parents have about medical opinions since they don’t feel well supported; from the beginning with the first consultations they find that there is little guidance, support and empathy from medical professionals.

Besides, it was found in several responses that the information is shared among families mainly thanks to the Internet, which facilitates the immediate dissemination of information.

Likewise, in this section there is little general knowledge of autism spectrum disorder, since most families have not heard about it until the moment of diagnosis, and it is precisely that lack of knowledge that generates fear and bewilderment at the beginning.

Access and use of information / communication media

These families have busy lives where there is no time to watch television or listen to radio, however, some of them take time to look for programmes related to autism spectrum disorder , while others prefer to look for entertainment or informational programmes. We observed the importance and high frequency of smart phone use for the exchange of information on this subject or on more everyday topics. Another aspect is the use of social networks by parents who choose to use them for the purpose of socialisation and/or to become informed, especially about autism spectrum disorder, by disseminating information or supporting other families.

Information behaviour in general in relation to the subject

This section shows the importance of parent groups in providing support and containment to families, although for some parents the lack of confidence in the information presented remains, so many also rely on the indications of doctors and therapists. The information they seek or need about the condition of their children is of the greatest interest, especially to find ways to help them in their day-to-day challenges.

Parents prefer electronic/digital format above all as a means of communication to share information, especially to use the Internet and social networks, but on the other hand, they also consider it important to communicate personally (face-to-face). There are parents who think that in Uruguay there is still a long way to go in terms of research on autism, and that research and developments of other countries cannot be adapted to the reality that is lived in this country; there are also parents who agree that the information they have found has helped them to make decisions about the welfare of their children. The search for information can represent a problem or a challenge when it comes to finding quality, truthful and natural language information that is not only intended for doctors or health professionals; many parents are faced with information that does not meet any of these characteristics and generating discomfort and feelings of frustration and helplessness in such a situation.

Critical incident

In this section, the objective was to ask parents to think and try to remember if they had sought information related to the diagnosis of their children in the last year; the majority said yes. Regarding the satisfaction and use of information, many parents are satisfied with the information they found and shared it. Parents also considered that they would seek information in the same way they had already sought. As for the most consulted topics in the last year, the most mentioned were education, followed by health and social security.

Conclusions

When it comes to knowing the different information needs presented by parents of people with autism spectrum disorder, it was observed that information becomes vital for families; they depend on it to know how to start acting, what they need to do or how to solve different difficulties and/or situations that arise. Many parents feel that information presented on the Internet is a great tool that can facilitate the resolution of doubts and access information without limit. But that is precisely the problem; the information without professional endorsement or proven veracity can be dangerous for those who are just beginning this journey, because as indicated by several interviewees of all sections, anyone can publish on the Internet and there is no guarantee of trustworthiness. That is one of the fears that arises especially in parents with younger children or with recent diagnoses, and it is also confirmed in the study by Gibson, et al. (2017).

Regarding the preference of sources of information, it was detected that families prefer the use of local sources focused on the country and its reality, although they referred to other countries which are more advanced on this subject. They feel supported when looking for information from other parents who have gone through the same situation, therapists and specialists, as well as organisations such as Aletea and this finding is similar to that found in the study by Mackintosh, et al. (2005).

Something that should also be highlighted in this research is the lack of knowledge about autism spectrum disorder of the vast majority of families prior to diagnosis, which in many cases could delay access to early care and therapies:

Studies on the information needs and behaviour of parents of children with ASD demonstrate that these parents do not often know anything about autism before they start suspecting that “something might be wrong with my child“, which brings to delays in therapy at the very beginning. (Martinović & Stričević, 2016)

Regarding access to information, several families expressed their discomfort and concern that most accessible information is designed only for early childhood, and as their children grow older it gets more complicated to find sources of information to face doubts about their growth, adolescence and transition to adult life, as well as the great fear of all parents about the future life of their children, and also if their children will be able to become independent or not. This concern also reflects in the parents of another study:

Parents of older children describe more difficulty finding resources for their children as they moved closer toward independence. […] Most parents of adults described frustration and fear about the lack of information and services available… (Gibson, Kaplan & Vardell, 2017, p. 2197)

Information behaviour of parents changes accordingly to the stage in which their children are; at the beginning of the diagnosis it is where more questions, fears and concerns arise. It is also the stage where more information is sought and consumed, and as time passes, confidence appears when it comes to searching for and obtaining information, since parents are more experienced and have faced a wide history of information searches; it gets easier to discern which sources are valuable or of interest to them over others.

This experience is gained over time by testing different sources not only on the Internet but by consulting specialists, parent groups and associations. As pointed out by Grant, et al.:

Parents reported that their confidence was generally low to begin with, but improved as they became more familiar with their child's diagnosis, had opportunities to speak to a number of clinicians providing interventions and other parents about their child's diagnosis and felt empowered to make decisions. (Grant, et al., 2015, p. 128)

Families depend on the information that comes into their hands, that reaches them or that they get to make decisions. Not having enough information or information of good quality, where their positive or negative results are not verifiable or understood by parents, can have irreparable consequences or constitute a danger to the physical, mental or psychological integrity of these people and their families. (Grant, et al., 2015, p. 131)

To elucidate the problems faced by these parents would be a great contribution for the country, but especially for this community, even though this research is an exploratory study in a first stage, and a larger investigation will be carried out to obtain concrete results and encompass a bigger part of population. More needs to be done, as this should reach not only autism spectrum disorder but all disabilities and special needs.

In conclusion, it is interesting to observe how the results of this research coincide with the background studies and in turn this leads to reflecting the importance of continuing to develop research in this line of work because as indicated at the beginning of this project, studies are scarce when it comes to information behaviour and autism.

Acknowledgements

Raquel Chávez: The author would like to thank to Aletea Organisation for the support throughout this investigation, as well as all the families involved with it.

Martha Sabelli: The author would like to thank the research participants for their willingness to become part of the study, sharing their perceptions. She would also like to acknowledge the significant support of the anonymous reviewers for their useful and perceptive comments.

About the authors

Raquel Chávez is a Corporate Librarian at Willis Towers Watson in Montevideo, Uruguay. She holds a bachelor’s degree in Library Science from “Universidad de la República Oriental del Uruguay”, Montevideo. Her research interests are information behaviour in inclusion and diversity, information literacy, reading, health information behaviour. She can be contacted at raquelestefania_ch@hotmail.com
Martha Sabelli received her Ph.D. in Documentation in 2004 from the University of Alcalá, Spain. She is a Senior Researcher at the Information and Society Department, Information Institute, at the Faculty of Information and Communication, of the University of Republic, Uruguay. She can be contacted at martha.sabelli@fic.edu.uy

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