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Abstract

Public libraries have a social and ethical responsibility to ensure access to literature for everyone and provide low-intensive meetings places for a diverse population. Nevertheless, there are certain groups in society that are not frequently observed using the library. This study investigated the use of libraries and books by adults with intellectual disability. Semi-structured interviews were conducted with 25 caregivers and teachers. The main findings were that people with intellectual disability rarely visited the library, among others because the caregivers were concerned about bothering other patrons or did not perceive library visits as a relevant activity. Moreover, few engaged in reading as a leisure activity. Caregivers had no knowledge of adapted books, and these books were not actively promoted by the librarians. Consequently, many adults with intellectual disability were given children’s books instead of adapted, age-appropriate books. The findings have implications for caregivers pertaining to the potential of using public libraries and their tailored collections. The study also shows the need for librarians to promote library services and adapted books and to include a broader variety of users when promoting library services to local communities.

Keywords

Adapted books intellectual disability library services public libraries reading

Introduction

Public libraries play an important role in most societies. They represent low-intensity meeting places for all inhabitants in diverse communities (Audunson, 2005) and provide large collections of literature, information, information technology and various cultural activities. Access to these facilities is regarded as so fundamental that it is included in The UN Convention on the Rights of Persons with Disabilities (UN, 2006). In this convention, article 30-1c requires equal participation in cultural life, including access to ‘cultural materials in accessible formats’ and ‘places for cultural performances or services, such as (. . .) libraries’ (UN, 2006: 22).

Public libraries have certain core responsibilities, typically mandated in laws. For example, The Public Libraries Act in Norway states that the main responsibility for public libraries is ‘to promote the spread of information, education and other cultural activities through active dissemination and by making books and other media available for the free use of all the inhabitants of Norway’ (Folkebibliotekloven, 2014). Moreover, it is emphasized that the library have a special responsibility to provide ‘library services to users who have difficulties using the library’ (Folkebibliotekloven, 2014).

The Norwegian jurisdiction entails that public libraries shall offer services targeted at all types of users, with a particular responsibility towards people who may encounter barriers when using libraries. People with intellectual disability may represent such a user group (Barker, 2011). Intellectual disability can be defined as a person with ‘significant limitations both in intellectual functioning and adaptive behaviour as expressed in conceptual, social and practical adaptive skills’ (Schalock et al., 2021: 439). Visiting a library typically entails travel and engaging in social settings. Consequently, many people in this cohort can find it difficult to visit and use a library for various reasons, for example, impaired motor functions (Licari et al., 2020), reading proficiency (Channell et al., 2013) or communication skills (Boardman et al., 2014). It may also be challenging to read or enjoy mainstream fiction due to for example too advanced language or complex plots (Berget and Bugge, 2022). A previous study of how public libraries in Norway use and promote adapted books revealed that very few libraries promoted adapted books to people with intellectual disability (Berget, 2022). The aim of this study was therefore to explore this topic further and investigate whether caregivers of adults with intellectual disability are familiar with the tailored collections offered in the libraries.

This study set out to explore the use of libraries and books by adults with intellectual disability. A total of 25 people working with adults with intellectual disability were interviewed. The overall purpose was to investigate whether the books developed for people with intellectual disability are known by caregivers, because it seems likely that there is connection between knowledge about and utilization of these books. It was also a goal to explore whether reading is a leisure activity for people with intellectual disability. In this paper, reading comprises all types of reading, which gives equal status to for example printed books, audio books and braille books. Listening to an audio book or being read to will therefore be referred to as reading, acknowledging that there are different ways of accessing the content of a book.

Three research questions were investigated:

RQ₁: How do adults with intellectual disability use public library services?

RQ₂: How are literature and reading incorporated in the leisure activities of people with intellectual disability?

RQ₃: How familiar are people working with persons with intellectual disability with adapted books?

The objectives of the study were to contribute with knowledge on how to improve public library services for a cohort that is often overlooked and to hopefully be able to understand how to move forward in making reading and literature attractive leisure activities for people with intellectual disability. The paper is structured as follows: The background addresses public libraries as meeting places, the importance of having access to books, and adapted books for people with intellectual disability in Norway. (Digital library services are outside the scope of this study.) The method is then presented, before the main findings are reported and discussed.

Background

Public libraries as meeting places

Public libraries represent meeting places that are often considered important arenas for social inclusion and community building offering a diversity of services for free to the entire population (Engström and Eckerdal, 2019; Scott, 2011). Libraries are also considered safe spaces by many marginalized groups compared to other open public spaces (Fincher and Iveson, 2008). Bigby and Wiesel (2011) argue that many people with intellectual disability typically have ‘a distinct social space’, which is often limited to family, caregivers, co-residents and staff. It has also been reported that children and adults with intellectual disability are chronically lonely, which may result in poor mental health (Gilmore and Cuskelly, 2014; Honey et al., 2011). Reducing social exclusion is therefore reported as one measure to improve the overall life quality of people with intellectual disability (Honey et al., 2011).

Several researchers have emphasized the importance of public libraries as meeting places in general and for certain user groups in particular. For example, Audunson (2005) discussed the need for low-intensity meeting places where people are exposed to the interests and values of others through a diverse library community in a multicultural context. Moreover, public libraries constitute pertinent arenas for convivial encounters (Wiesel and Bigby, 2016). Public libraries may facilitate encounters which can increase the social inclusion for people with intellectual disability. Research has showed, however, that some people with intellectual disability are often excluded or self-excluded from certain mainstream settings due to for instance being too noisy or behaving in ways that others may find inappropriate (Wiesel and Bigby, 2016). Social attitudes towards intellectual disability and the practices of people in the support service may therefore present a barrier leading to exclusion (van Holstein et al., 2021).

Universal design constitutes a premise for libraries as inclusive meeting places, to ensure that all types of people can visit the library and utilize the various library services (Berget, 2020). Inclusion, however, relates to more than physical environments, for example, ‘communication access’ (how information is presented), and receptive communication. The ability of staff to communicate with people with intellectual disability has been reported as a key issue for inclusive libraries (Wiesel and Bigby, 2016). A study by Pionke (2020), however, revealed that many librarians felt unprepared for meetings with patrons with disabilities, and that more robust training programmes for librarians may be required. A participatory design approach involving librarians with mild cognitive impairments might also be purposeful (Anderson, 2021).

Grassi (2018) addressed teens with disabilities and their use of libraries and emphasized the need to allow teenagers with intellectual disability to be teens, despite parents suggesting they take part in library activities for children. There is not a big pool of research regarding adults with intellectual disability in context of public libraries or reading, but one study showed that women with intellectual disability used libraries and read more often than men (Umb-Carlsson and Sonnander, 2006). Verdonschot et al. (2009) concluded that there is not much knowledge of community participation of people with intellectual disability, but that people in community settings typically participate more than persons who live in more segregated settings. Nevertheless, this cohort participates much less in the community than people with other types of disabilities. There are some studies of how to develop public library services for people with intellectual disability (Akin and MacKinney, 2004) or the use of bibliotherapy (Mehdizadeh and Khosravi, 2018), but they typically focus on children. Consequently, there seems to be a gap in the knowledge of leisure reading and library use among adults with intellectual disability.

Reading

Library visits may be important for social inclusion. Reading books, however, may also positively affect personal growth and social skills. In general, reading books can help developing reading skills (Jerrim and Moss, 2019) and vocabulary due to introduction of unknown words (Moghadam et al., 2012), which may strengthen a person’s communication skills. The development of reading skills are also vital for personal progress and social engagement (Howard, 2011), and to generate empathy (Bal and Veltkamp, 2013).

Davie and Kemp (2002) found that shared reading among children with mild to moderate intellectual disability encouraged play, more complex language and conversational interaction with facilitators and other children. In a study of reading comprehension among middle school students, Browder et al. (2013) reported that story-based lessons increased reading comprehension. They concluded that when provided with intensive instructional support, it is possible for students with moderate intellectual disability to build comprehension at an early level of passage reading.

Several studies have addressed reading instruction and reading in various educational settings and in context of accessible information, but these are out of scope for this study. Less is known about the leisure reading of persons with intellectual disability, which is the focus of this study. Saletta and Winberg (2019), however, reported a lack of appropriate books. Books that hold a suitable reading level for many adults with intellectual disability are typically directed at children. It might therefore be difficult to find books for leisure reading. Although levelled texts have been reported to be successful, there is a lack of empirical support for the guidelines on how to develop accessible books (Nomura et al., 2010), which still seems to be the case.

Adapted books in Norway

In this context, the term ‘adapted books’ does not refer to modifications such as transforming adult books into children’s books, making movies of novels or graphic novels or produce a braille book based on a printed book. Here, “adapted books” refers to developing books where modifications according to the potential end user(s) have been included from the beginning of the writing process (Berget and Bugge, 2022).

The organization Books for Everyone is the main provider of adapted books in Norway (Bugge et al., 2021). The organization also has a network of libraries entitled ‘Books for Everyone Libraries’, which receive book packages twice a year containing adapted books and information on how to promote them. These libraries also coordinate reading representatives, although they mainly read for elderly people. Books for Everyone develops books based on The Books for Everyone Framework (Berget and Bugge, 2022), where considerations for the target reader are incorporated from the initial phase to publication and promotion. Books for Everyone is funded through the central government budget in Norway and produces books in seven categories, which target different user groups. The category ‘Easy to understand’ is targeting people with intellectual disability, dementia, or aphasia.

Adapted books are referred to in different ways, for example, High level/low content books, Hi Low Books, Easy Language Books or Easy-read (Nomura et al., 2010; Sutherland and Isherwood, 2016). Nomura et al. (2010) discuss two fundamentally different adaptation strategies. The first approach only applies a linguistic adaptation, which entails that books are easier to read, but not understand. The second approach affects language and content, so the books are also easier to comprehend. The ‘Easy to understand’ books developed by Books for Everyone represent the latter, where adjustments are made in all aspects of the books, such as the narrative, number of characters, scenes and the use of illustrations (Bugge et al., 2021).

One important characteristic of the ‘Easy to understand’ books developed by Books for Everyone is the effort put into ensuring that the target readers have access to age-appropriate books (Bugge et al., 2021). For example, it has been reported that many people with intellectual disability prefer reading picture books because pictures are easier to understand than reading and comprehending words (Hollins et al., 2016). Books for Everyone has therefore developed several picture books for young adults and adults (see Figure 1).

Figure 1.

Excerpt from The New Julie (Andersen, 2012), used with permission.

In a previous study by Berget (2022), 178 libraries answered a survey about their use and promotion of adapted books in Norway. The books from Books for Everyone comprised the main part of the collection. Only 7.3% (n = 13) regarded people with intellectual disability as a potential target group for these books. Although 75.8% of the libraries (n = 135) did actively promote the adapted books, only 6.7% (n = 10) promoted these books to people with intellectual disability. Some of the main reasons for not promoting these books were a lack of knowledge about the books, and the librarians did not have sufficient expertise regarding the intended target users.

Methodology

Procedure

The study comprised 25 semi-structured interviews conducted with caregivers and teachers engaged in adults with intellectual disability. Interviews were selected as methodological approach to get a better understanding of the environment many people with intellectual disability reside in. Talking to caregivers may also provide a better understanding of a broad variety of people with intellectual disability because they have worked with and met a diversity people through their careers. The overall goal with the recruitment was to include people with diverse backgrounds and potentially differing attitudes and habits concerning libraries and reading. The inclusion criteria were that participants had to be above 18 years of age and have work experience with intellectual disability extending at least 2 years. Caregivers were recruited to represent users with -*-different degrees of intellectual disability, based upon the International Classification of Diseases and Related Health Problems (ICD) version 11 (see Table 1). ICD is developed by The World Health Organization (2019) and is a legally mandated health data standard used in Norway.

Table 1.

Categories from ICD-11 (World Health Organization, 2019).

Category	Language	Self-care	Requirements
6A00.0 Mild disorder of intellectual development	Challenges in acquiring complex language	Mastered by most users	Can acquire relatively independent living as adults, but may require some support
6A00.1 Moderate disorder of intellectual development	Basic skills	Mastered by some users	Considerable and consistent support to achieve independent living and employment
6A00.2 Severe disorder of intellectual development	Very limited language	May have motor impairments and require daily support	Require daily support in a supervised environment for adequate care
600.3 Profound disorder intellectual development	Very limited language	May have co-occurring motor and sensory impairments	Typically require daily support in a supervised environment for adequate care

The interviews with the caregivers and teachers lasted on average 38 minutes. All interviews were recorded, transcribed and anonymized. A semi-structured interview guide was applied. The interview guide had been piloted to ensure that participants were not asked to violate professional secrecy. The participants were asked open questions related to the use of libraries, books and reading. They were also asked about adapted books and whether they were familiar with books developed by Books for Everyone. The interviewer brought four pages comprising pictures of book covers to explore whether the participants recognized any of the adapted books (see Figure 2). The reason for showing the book covers was that some people might be familiar with the adapted books but have no direct knowledge of the organization behind them.

Figure 2.

One of four pages of book covers presented to the participants.

The interviewer had also brought seven books developed by Books for Everyone in the ‘Easy to understand’ category. These books were showed to and discussed with the participants to get an impression of how they perceived these books. The books were selected to represent different genres and adaptations targeting adults with intellectual disability in different ICD categories (see Table 2).

Table 2.

Books presented during the interviews.

Author & year	Translated title	Type of adaptation
Andersen (2012)	The new Julie	Picture book for adults
Diesen (2015)	With eyes on animals, dolls and balloons	Book with a ‘communication window’ to be read aloud for people with no verbal communication
Eriksen and Herteig (2009)	Paal’s travel	Main person with Down syndrome, easy language and content
Innstrand and Linde (2010)	So good! Easy Read Cookbook	Easy read cookbook containing symbols, photos and little text
Kahrs (2005)	Julie + Lita	Alternative sign communication (BLISS)
Lykkenborg (2011)	The voice that disappeared	Illustrated novel, easy language and content
Westergård and Heia (2014)	Friends: A book for people with developmental impairments and their helpers	A book co-written by a person with intellectual disability addressing relevant topics such as co-determination and living in a group home

Participants

Of the 25 participants, 21 (83.6%) identified as female, while four (16.4%) identified as male, which corresponds with the gender distribution of health care personnel in Norway (Statistics Norway, 2023). The participants were 29–64 years old, with an average age of 48.8 years. Average work experience with people with intellectual disability was 18.6 years. Several professional backgrounds were represented, such as welfare nurses, social workers and teachers. Both civic services and the private sector were represented in five counties in four types of facilities, namely group homes, activity centres, sheltered workshops and upper secondary schools (see Table 3).

Table 3.

Participant characteristics.

ID	Gender	Age	Education	Workplace	Experience
P01	Female	30	Social worker	Group home	12 years
P02	Female	41	Child welfare officer and special needs education	Sheltered workshop, managing director	18 years
P03	Female	42	Preschool teacher and project management	Sheltered workshops and group homes, advisor for both	6 years
P04	Female	48	Paediatric nurse and management training	Group home, managing director	24 years
P05	Female	29	Psychologist	Group home	11 years
P06	Female	54	No formal education	Group home	22 years
P07	Male	61	Social educator	Group home and adult day care centre	17 years
P08	Female	50	Social educator	Group home, managing director	32 years
P09	Female	48	Welfare and health care worker	Group home	16 years
P10	Female	38	Health care worker	Group home	6 years
P11	Female	56	Welfare nurse	Ambulant team	9 years
P12	Female	60	Teacher	Sheltered workshop	21 years
P13	Female	59	Welfare nurse	Activity centre	29 years
P14	Female	63	Welfare nurse	Activity centre	24 years
P15	Female	55	Teacher	Group home	28 years
P16	Male	52	Nurse	Group home	11 years
P17	Female	63	Child welfare officer and special needs education	Upper secondary school	46 years
P18	Female	64	Welfare nurse	Group home	30 years
P19	Female	61	Welfare nurse	Group home	19 years
P20	Male	46	No formal education	Group home	25 years
P21	Female	43	Social worker	Activity centre	14 years
P22	Female	35	Welfare nurse	Group home	9 years
P23	Female	37	Welfare nurse	Group home	17 years
P24	Male	39	Teacher	Upper secondary school	12 years
P25	Female	35	Nurse	Group home	7 years

Ethics

The project was approved by Sikt, the Norwegian Agency for Shared Services in Education and research (project number anonymized). All participants signed written consent forms before the recorder was turned on. They were informed that they could withdraw from the study at any time without giving any justification, that were allowed to see all the data recorded about them, that all data would be anonymized and that they could demand to have the data erased if desired. None of the questions violated professional secrecy.

Data analysis

A six phase thematical analysis was conducted using the procedures described by Braun and Clarke (2006). Interviews were transcribed and analysed in Nvivo release 1.6.1. A set of initial codes were manually generated. The codes were then sorted into different themes, reviewed before they were defined and named. Based on the codes, three main themes were identified, represented by 13 aspects (see Table 4).

Table 4.

Themes and aspects identified.

Using public libraries (RQ₁)	Reading (RQ₂)	Adapted books (RQ₃)
• Library visits	• Reading as leisure activity	• Knowledge
• Library departments	• Access to books	• Promotion
• Events	• Age-appropriate reading material	• Responses
• Work		• Potential areas of application
• Borrowing library material
• Communication with librarians

Findings

In this section, the findings will be presented according to the three research questions. To separate whom the questions refer to, caregivers or participants will be used to refer to the interviewees, while people with intellectual disability or end-users will be used referring to the cohort.

RQ₁: Using public library services

The first theme addressed the use of public library services. Key aspects were (i) library visits, (ii) library departments, (iii) events, (iv) work, (v) borrowing library material, (vi) communication with librarians.

When asked whether the end-users ever visited the library, 10 participants answered no and four occasionally. 11 persons replied that most of their end-users did not, but one or a very few people used the library. A common reason for not using the library was that it was not perceived as relevant. Although some of the end-users went to the library, few were staying there in the weekends or attending events, especially at times when the library was crowded. P01 elaborated on this:

many of our residents can have bothersome sounds or. . . we have thought it might be a bit stigmatizing. (. . .) I am thinking that they may disturb the children, but that the parents also may. . . it might be a bit wrong. . . they make strange sounds, they can suddenly get up . . . it can feel a bit unnatural. I am thinking that it might be a bit stigmatizing for them. (. . .) They stand out.

P08, working with people with severe or profound disorder of intellectual development, also referred to not using the library due to considerations for others: ‘most people are frightened by their appearance’.

Of those who did use the library, P07 mentioned that they often went to a library further away than the local library ‘because then it becomes a trip. It is a bit of social training’. At one of the activity centres, P21 informed that several of the participators had library visits included in their plans: ‘some have it every week and some, every second week. And some do not [go there] at all. So, it varies, depending on needs’. Among the people who did not visit the library, there was an attitude among a few that it might be something to consider. For example, P16 said: ‘this is something we should discuss. (. . .) It could be interesting for some, at least’.

The 15 participants that visited the library rarely or occasionally were asked which library department they utilized. 10 stayed in the children’s department, one went to the crime fiction, two used both the children’s and adult’s department, while two did not know. When asked about why the adult users went to the children’s department, the participants typically referred to the cognitive age of the user and the attraction to colours, nice sitting groups and books they enjoyed reading. For example, P02 explained: ‘It is at that level. So, there are children’s books in all shapes’. This was supported by P22, who said: ‘It is their functional level that makes them. . . they cannot read a regular fiction book with loads of text. So, then they go there’. P20 also addressed the issue of too complex books in the adult’s department: ‘Everyone has different levels. And his level is there. (. . .) I cannot go to the adult’s department, because then he doesn’t manage to read. But when we come to the children’s department (. . .), then it’s fine’. The need for books containing pictures was also emphasized by P17:

that is where they have these books that maybe has something more than text and a few pictures. It is something different for children, which is more . . . that one thinks is more attractive for this user group than regular adult books.

Regarding events at the library, only one participant working in a group home mentioned having a user going to a read-aloud event at the library once a week while two participants from sheltered workshops (P02 and P12) said that four end-users worked in the library together with a caregiver. One person had quite severe disabilities and put a few books in place during a day, while three others conducted more advanced tasks.

Only seven participants confirmed having end-users borrowing library material, such as books written by a specific politician (P04), crime fiction (P05), cookbooks, animal books and mostly picture books (P22), two borrowed different types of books (P06, P 2), one borrowed movies and talking books (P09), while one only brought home talking books (P18). The remaining participants did not borrow any library material, among others because it was difficult to keep track of what they had lent that should be returned proper times and because items could be damaged. P01 elaborated on this:

We used to [borrow material], but then it is difficult getting this into a system, because often there are reminders and oversights. So that was why we stopped. (. . .) It is probably because we have so many residents and that there are so many people working here.

During library visits, only one participant (P04) had contacted the librarians for advice or help and they were never approached by the librarians. The person who had been in in contact with a librarian referred to a positive experience:

I felt that we were very welcome. There was something about that they, one of them, she was very service-minded. And she caught very quickly that it was not me she should talk to, but the users. (. . .) Took them seriously.

In contrast, P09, despite not being frequently in the library explained:

often I feel they [the librarians] do not have much time (. . .) they are very few who are working there. So, it is often difficult. . . to get help if needs help. But I think they may be a bit insecure. Insecure about what we are thinking.

The participants had not received invitations to events or information about library services in general or outreaching library services in particular. One exception was a teacher who had been contacted by the library to attend a reading session using one of the books targeting people with intellectual disability. He did, however, not receive any information about other books developed by Books for Everyone in connection with this event.

RQ₂: Reading

The second theme concerns reading and is divided into the following aspects: (i) reading as leisure activity, (ii) access to books, (iii) age-appropriate reading material.

The participants were asked about leisure reading. Although 11 answered that some of the end-users read, it was usually only one person, and this was not a very common activity. A total of eight people sometimes read aloud for one or more persons, while six said books were never used, neither for reading silently nor aloud. Among those end-users who read by themselves, one read crime books. Other examples were religious texts, poems and books with images.

Some of the caregivers said they would have liked to read aloud, such as P19: ‘but one does not really have the time’. P03 also referred to being pressed for time: ‘I haven’t used any literature. There is too much administrative work’ (P03). Another explained that reading was not a part of their activity plan: ‘not many does that [read aloud]. Although I am sure it would have been fulfilling (. . .). That may have something to do with the fact that we do not focus on that type of accommodation’ (P16). P25 described reading aloud as a purposeful activity:

It is also the response. That I can see it, if they smile or give me a positive response when I start reading. (. . .) I cannot say for sure whether it’s the book or the talking that matter, but I think there is something that happens when we sit together with a book. (. . .) It is you and me here.

In contrast, others expressed a worry about reading in case certain topics were mentioned that triggered anxiety ‘because then there is much talk, and then thinking’ (P20).

Participants were asked about the access to books where people with intellectual disability live or reside. A total of nine people answered that the end-users had no access to books, six said they had to acquire books themselves, but few had books, two had access to a school library, two had previously received books through outreaching library services, while six mentioned end-users who had a few books. The books they had access to comprised cookbooks, books on how to make it on your own and two had picture books for children.

One topic that often came up during the interviews was the frequent use of children’s books among adults with intellectual disability. This choice was sometimes initiated by end-users asking for specific titles they had known from the childhood, but more often the caregivers justified the use of children’s books with their cognitive age: ‘It is very much directed towards children. Because they are like that’ (P09). Others mentioned that children’s books were the only suitable material due to little text and many pictures (not knowing about the adapted books): ‘We have many who have a cognitive age as small children. (. . .) there are not a lot of books directed at adults that excite’ (P24).

When asked about the topics covered by the children’s books, and whether they could be of interest to adult readers, many started reflecting about this as potentially problematic. Many participants discussed how for examples activities ‘are too childlike’ (P04). P01 said ‘they have the adult everyday life, as well’. P03 elaborated:

they are at that level (. . .) but the fact that one puts them in that age reinforces the feeling that you are a child. You have a cognitive level as a five year old (. . .) but you are also occupied with sexuality and a whole lot of other things, right!.

P19 also expressed similar thoughts: ‘they have an age, and then they can be cognitively 5−6 years. But still, they have a lot of life experience, which only increases’ (P19). P07 talked about a resident who wanted to go to Bible school: ‘she thinks of herself as a normal individual (. . .) I think she might have managed with some adaptation. (. . .) They are adults and should be treated like adults’.

The view on adults with intellectual disability as being children was brought up by several participants. P05 showed a clear frustration about the focus on childlike content:

I think it is important to dispose of a problematic theory that has never been proved, that people with intellectual disability over a certain age, they do not have learning outcome and cannot learn anymore. And that is completely wrong. (. . .) Should we remove all stimuli because they cannot learn anymore?.

RQ₃: Adapted books

The third theme, adapted books, comprised four aspects: (i) knowledge, (ii) promotion, (iii) responses, (iv) potential areas of application.

Only one person was familiar with Books for Everyone, because she had heard about it during her further education. A total of 23 did not know Books for Everyone, while one claimed to have heard the name of the organization but did not have any further knowledge of it. When given the four pages with pictures of books covers, seven recognized one or several books, 14 had not seen any of them, and four were not sure. A common response after the interviewer had given information about Books for Everyone was frustration about not knowing about the ‘Easy to understand’ books. For example, P01 said: ‘I feel so ignorant!’ while P19 stated: ‘now I feel, almost a bit sad. Because one has not been aware of this, and this, some of this could be [useful]’. Participants also expressed the need for more information about these books: ‘Now we are getting information that we never have had’ (P07). P11 declared: ‘A lot of interesting titles, but I have not seen them (. . .) I did not know that shelf existed!’

None of the participants had received information about adapted books from their local library, the municipality, schools, or other relevant agencies. P15 pondered whether the lack of promotion could be due to ‘lacking interesting for this group [people with intellectual disability]’. P24 was particularly surprised that the library had not informed about this collection, since they previously had contacted them about a school visit using one the adapted books. Suggestions on how to make these books more well known were to include adapted books in the social educator education. Moreover, local authorities responsible for this cohort could hold courses or send out information to group homes, activity centres and sheltered workshops. The librarians could also contact the caregivers and end-users, both during library visits and through e-mail or mail.

All participants expressed excitement about the adapted books they were shown during the interviews. Many started thinking about how they could use the books. The adapted cookbook (Innstrand and Linde, 2010) was the book that engaged the most, receiving immediate feedback from 16 participants that they wanted to try it out. As P16 put it: ‘you’re not getting this one back [laughing]’. This book was regarded as most relevant in the group homes, but also at activity centres where the end-users took part in cooking. Caregivers working with people with severe or profound disorder of intellectual development also liked the book, but it was perceived as too challenging for their end-users. In contrast, they found the book with the communication window (Diesen, 2015) useful because they had several end-users without verbal communication. The possibility to read aloud and communicate through a hole in the book was assessed as very useful.

The picture book for adults (Andersen, 2012) also received positive response, particularly because it had the same amount of text and pictures as children’s books (see Figure 1), but represented age-appropriate content. P25 elaborated: ‘I have heard there is a lack of books. This is easy. It is illustrative, and it is kind of a children’s book in its composition. But the content is really. . . respecting that you are an adult’. The book telling the life story of a person with Down syndrome (Westergård and Heia, 2014) also got much positive feedback. The participants especially appreciated the topics addressed, such as client participation, being in love and living in a group home. The book with Bliss symbols (Kahrs, 2005) was not perceived as relevant, because no participants had end-users who applied these symbols, although the principle of using symbols in addition to text was appreciated. Both Paal’s travel (Eriksen and Herteig, 2009) and the voice that disappeared (Lykkenborg, 2011) were described as books that could work well as a read aloud activity. The fact that the main person in Paal’s travel had Down syndrome was also brought up as positive.

After being introduced to the adapted books brought to the interview, 12 of the participants immediately started reflecting on how they could introduce books or initiate a new praxis. The most frequently mentioned suggestion was to use the adapted books in joint reading at activity centres or group homes (some also thought about showing the illustrations on a screen). Others mentioned using the books as a starting point for talking about various issues, such as feelings. One participant elaborated on how the books could be used in group homes: ‘[I am] very positive towards these books that are illustrated, but in a grown-up way! It hits well, cognitive. And to get an angle to talk about difficult things’ (P11). P05 discussed a need for a change in approaches among the staff:

for example, when you mentioned this Julie-book (. . .). That she also talked about friendship and being in love. This is something we are guiding [the end-users] a lot about, because they do not necessarily understand what being in love entails. What is the difference between a friend and being in love? And how do I get friends? And then there is no automatic connection where we are thinking, let’s go to the library and find a good book about it. We don’t think like that.

Discussion

The first research question (RQ₁) explored how adults with intellectual disability use public library services. According to both CRPD (UN, 2006) and the public library law in Norway, people with intellectual disability are entitled to inclusive library services and cultural material, such as books. Moreover, the nature of public libraries as low-intensive meeting places (Audunson, 2005) that can facilitate convivial encounters (Wiesel and Bigby, 2016) make libraries a purposeful low-threshold service for increased community presence and participation. However, many caregivers did not seem to utilize this potential.

Although most of the group homes and day centres were in close proximity to large public libraries, few caregivers utilized the library services. One justification was differentness. Caregivers were anxious about attracting negative attention or standing out from the other patrons. Such self-exclusion corresponds with the findings by Wiesel and Bigby (2016). This mode of thought contradicts the need to broaden the social space for many people with intellectual disability to improve life-quality and mental health (Bigby and Wiesel, 2011; Gilmore and Cuskelly, 2014; Honey et al., 2011). None of the participants mentioned avoiding the library due to negative experiences or responses from either staff or other patrons. It might therefore be a need to consider whether some of the limitations may be caused by self-exclusion by caregivers based upon their perceptions of libraries. At the same time, librarians should engage in promoting the library services and collections of, among others, adapted books.

The lack of contact between the librarians and the patrons with intellectual disability found in this study can be connected to the findings by Wiesel and Bigby (2016) that communication skills among staff is a key issue. Reports that librarians do not feel they have sufficient skills related to user diversity (Pionke, 2020) and a lack of knowledge of adapted books (Berget, 2022) which implies a need to include such knowledge in librarian education, particularly for students aiming at working in school- or public libraries. It is, however, surprising that not more libraries did actively support this group of users, especially since the caregivers lived in areas where the local public library was a part of the ‘Books for Everyone Libraries’ network. Consequently, it might be a need to focus more on readers with intellectual disability in the material provided by Books for Everyone.

Of the people who visited the library, most of the caregivers reported using the children’s department. Discussing this topic quickly becomes ambivalent. On one side, if library users with intellectual disability feel most comfortable in and want to use that department, they should be allowed to. Nevertheless, there should be an age-appropriate alternative. Although a lack of books for leisure reading at a proper level is reported for people with intellectual disability (Saletta and Winberg, 2019), there is a collection available in Norway (Berget, 2022). If, however, patrons never go outside the children’s department, they will not find these collections, unless librarians specifically point towards them. A question to explore further would therefore be why caregivers did not involve librarians to a larger degree or invested time or effort into exploring the library collection, but simply assumed there would not be books tailored for this cohort.

The second research question (RQ₂) addressed how literature and reading are incorporated in the leisure activities of people with intellectual disability. This study reveals that reading or looking through books are activities people with intellectual disability seldomly engage in by themselves, with a few exceptions. In some group homes and activity centres, the staff read aloud for either one or more end-users. Possible explanations for not reading can be related to a lack of reading skills or interests. However, attitudes and knowledge among caregivers may also be of importance. For example, if caregivers are not familiar with books that may be perceived as relevant and interesting or do not perceive reading as an activity to promote, end-users may not be encouraged to read.

Research shows that reading can develop more complex language and more conversational interaction with others (Davie and Kemp, 2002), which entails that reading could be a meaningful leisure activity for many end-users. The attitude that adults with intellectual disability cannot learn anything new mentioned during the interviews contradicts findings by Browder et al. (2013), who found that reading comprehension is possible if proper instructional support is given.

Based on the extensive research that emphasizes the positive outcome of reading books (Bal and Veltkamp, 2013; Davie and Kemp, 2002; Howard, 2011; Jerrim and Moss, 2019; Moghadam et al., 2012), it seems plausible that adults with intellectual disability could benefit from reading in some form or be read to. A premise, however, is that the books are accessible so that they can be read, understood and enjoyed.

The third research question (RQ₃) explored how familiar people working with persons with intellectual disability are with adapted books. Although all the people who were interviewed had access to local public libraries that offered the books from Books for Everyone, caregivers were not aware of these collections. It was also evident that the librarians did not promote these books when they were in the library, which is consistent with the findings by Berget (2022).

Among people with intellectual disability, there is often a mismatch between biological and cognitive age (WHO, 2001). There is, however, no reason to assume that adults with intellectual disability are interested in childish topics, such as being in kindergarten or starting school. On the contrary, this study revealed that many people with intellectual disability were daily engaged in topics such as falling in love, having a job and trying to manage on your own, which shows the importance of providing age-appropriate books. This way of thought is in accordance with the advice to librarians put forward by Grassi (2018) to let teenagers with intellectual disability be teenagers, and not only engage in activities directed at children when visiting the library. For example, books like the adapted cookbook can be useful in becoming more independent while picture books about getting a sweetheart may be both enjoyable and useful. Books can also be a very good starting point for conversations about different topics, which were also mentioned by several participants. It is also likely that age-appropriate books will enhance the motivation to read because the reading experience can become more enjoyable when less effort is needed to complete a book.

Conclusion

The lack of reading, access to books in general, and age-appropriate literature in particular, found in this study entails that many people with intellectual disability may miss out on a purposeful way to develop relevant skills to cope in life that may also provide a meaningful leisure activity. Moreover, there is a potential to include this cohort to a larger degree at local public libraries, but a promotion to the caregivers about the library services may be required. It seems purposeful to engage both caregivers and librarians in increasing the knowledge about adapted books and to reach a common understanding that public libraries are for everyone, which entails that there is no need for self-exclusion of certain users. There seems to be several initiatives from the public library that may increase the inclusion of people with intellectual disability, for example, investing more time in becoming familiar with the adapted books in the Easy to Understand category, actively promote adapted books and other library services to patrons when they come the library, contact adult day care centres or group homes to market their library services and emphasize that all types of people are welcome in the library. Libraries should also consider developing the arrangements with reading representatives to address people with intellectual disability using the adapted literature as a starting point. In context of research, it might be purposeful to explore public policies and practices for people with intellectual disability and to conduct users tests of the adapted literature.

Footnotes

Acknowledgements

The author wishes to thank the participants for their valuable time.

Declaration of conflicting interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Gerd Berget

Author biography

Dr. Gerd Berget is an associate professor in library and information science at Oslo Metropolitan University. Her main research areas are, among others, universal design, user diversity, interactive information retrieval, and access to books for everyone. Dr. Berget has conducted several user studies on information searching and dyslexia and has studies the reading habits and information seeking of people with intellectual disability. She has also worked on the development of adapted books in Norway.

References

Akin

MacKinney

(2004) Autism, literacy, and Libraries. Children and Libraries Summer/Fall: 35–43.

Andersen

(2012) Den Nye Julie [The New Julie]. Stamsund: Orkana.

Anderson

(2021) Exploring the workforce experiences of autistic librarians through accessible and participatory approaches. Library & Information Science Research 43(2).101088

Audunson

(2005) The public library as a meeting-place in a multicultural and digital context: The necessity of low-intensive meeting-places. Journal of Documentation 61(3): 429–441.

Bal

Veltkamp

(2013) How does fiction reading influence empathy? An experimental investigation on the role of emotional transportation. Plos One 8(1): e55341.

Barker

(2011) On the outside looking in: Public libraries serving young people with disabilities. Australasian Public Libraries and Information Services 24(1): 9–16.

Berget

(2020) Universal design as a premise for making public libraries into low-intensive meeting places. In: Evjen

Olsen

Tveit

ÅK

(eds) Rød Mix: Ragnar Audunson Som Forsker Og Nettverksbygger [Red Mix: Ragnar Audunson as Researcher and Network Builder]. Oslo: ABM-media, pp.279–301

Berget

(2022) The use and promotion of adapted books in Norwegian public libraries. Journal of Librarianship and Information Science 54(1): 108–120.

Berget

Bugge

(2022) The development and production of literature within an easy language and a universal design perspective. Publishing Research Quarterly 38(2): 308–325.

10.

Bigby

Wiesel

(2011) Encounter as a dimension of social inclusion for people with intellectual disability: Beyond and between community presence and participation. Journal of Intellectual & Developmental Disability 36(4): 263–267.

11.

Boardman

Bernal

Hollins

(2014) Communicating with people with intellectual disabilities: A guide for general psychiatrists. Advances in Psychiatric Treatment 20(1): 27–36.

12.

Braun

Clarke

(2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2): 77–101.

13.

Browder

Hudson

Wood

(2013) Teaching students with moderate intellectual disability who are emergent readers to comprehend passages of text. Exceptionality 21(4): 191–206.

14.

Bugge

Berget

Vindenes

(2021) Easy language in Norway. In: Lindholm

Vanhatalo

(eds) Handbook of Easy Languages in Norway. Berlin: Frank & Timme, pp.371–400.

15.

Channell

Loveall

Conners

(2013) Strengths and weaknesses in reading skills of youth with intellectual disabilities. Research in Developmental Disabilities 34(2): 776–787.

16.

Davie

Kemp

(2002) A comparison of the expressive language opportunities provided by shared book reading and facilitated play for young children with mild to moderate intellectual disabilities. Educational Psychologist 22(4): 445–460.

17.

Diesen

(2015) Med Blikket På Dyr, Dokker Og Ballonger [With Eyes on Animals, Dolls, and Balloons]. Oslo: Solum.

18.

Engström

Eckerdal

(2019) Public libraries as promoters of social sustainability? Information Research 24(4): 1914.

19.

Eriksen

Herteig

(2009) Påls Reise [Paal’s Travel]. Oslo: Samlaget.

20.

Fincher

Iveson

(2008) Planning and Diversity in the City: Redistribution, Recognition and Encounter. London: Palgrave Macmillan.

21.

Folkebibliotekloven (2014) Lov om folkebibliotek [The Public Libraries Act]. Available at: https://lovdata.no/dokument/NL/lov/1985-12-20-108?q=folkebibliotek (accessed 02 February 2024)

22.

Gilmore

Cuskelly

(2014) Vulnerability to loneliness in people with intellectual disability: An explanatory model. Journal of Policy and Practice in Intellectual Disabilities 11(3): 192–199.

23.

Grassi

(2018) Building inclusive communities: Teens with disabilities in libraries. Reference Services Review 46(3): 364–378.

24.

Hollins

Egerton

Carpenter

(2016) Book clubs for people with intellectual disabilities: The evidence and impact on wellbeing and community participation of reading wordless books. Advances in Mental Health and Intellectual Disabilities 10(5): 275–283.

25.

Honey

Emerson

Llewellyn

(2011) The mental health of young people with disabilities: Impact of social conditions. Social Psychiatry and Psychiatric Epidemiology 46(1): 1–10.

26.

Howard

(2011) The importance of pleasure reading in the lives of young teens: Self-identification, self-construction and self-awareness. Journal of Librarianship and Information Science 43(1): 46–55.

27.

Innstrand

Linde

(2010) Så Godt: Lettlest Kokebok [So Good: Easy Read Cookbook]. Oslo: Universitetsforlaget.

28.

Jerrim

Moss

(2019) The link between fiction and teenagers’ reading skills: International evidence from the OECD PISA study. British Educational Research Journal 45(1): 181–200.

29.

Kahrs

(2005) Julie + Lita. Bergen: Heidilines.

30.

Licari

Alvares

Varcin

, et al (2020) Prevalence of motor difficulties in autism spectrum disorder: Analysis of a population-based cohort. Autism Research 13(2): 298–306.

31.

Lykkenborg

(2011) Stemmen Som Forsvant [The Voice That Disappeared]. Oslo: Cappelen Damm.

32.

Mehdizadeh

Khosravi

(2019) An inquiry into the effectiveness of bibliotherapy for children with intellectual disability. International Journal of Developmental Disabilities 65(4): 285–292.

33.

Moghadam

Zainal

Ghaderpour

(2012) A review on the important role of vocabulary knowledge in reading comprehension performance. Procedia - Social and Behavioral Sciences 66: 555–563.

34.

Nomura

Nielsen

Tronbacke

(2010) Guidelines for Easy-to-Read Materials. The Hague: International Federation of Library Association and Institutions.

35.

Pionke

(2020) Library employee views of disability and accessibility. Journal of Library Administration 60(2): 120–145.

36.

Saletta

Winberg

(2019) Leveled texts for adults with intellectual or developmental disabilities: A pilot study. Focus on Autism and Other Developmental Disabilities 34(2): 118–127.

37.

Schalock

Luckasson

Tassé

(2021) An overview of intellectual disability: Definition, diagnosis, classification, and systems of supports (12th ed. American Journal on Intellectual and Developmental Disabilities 126(6): 439–442.

38.

Scott

(2011) The role of public libraries in community building. Public Library Quarterly 30(3): 191–227.

39.

Statistics Norway (2023) Health care personnel. Available at: https://www.ssb.no/en/arbeid-og-lonn/sysselsetting/statistikk/helse-og-sosialpersonell (accessed 17 January 2024)

40.

Sutherland

Isherwood

(2016) The evidence for easy-read for people with intellectual disabilities: A systematic literature review. Journal of Policy and Practice in Intellectual Disabilities 13(4): 297–310.

41.

Umb-Carlsson

Sonnander

(2006) Living conditions of adults with intellectual disabilities from a gender perspective. Journal of Intellectual Disability Research 50(Pt 5): 326–334.

42.

UN (2006) Convention on the rights of persons with disabilities. Available at: https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf (accessed 5 February 2024)

43.

van Holstein

Wiesel

Bigby

, et al (2021) People with intellectual disability and the digitization of services. Geoforum 119: 133–142.

44.

Verdonschot

de Witte

Reichrath

, et al (2009) Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research 53(4): 303–318.

45.

Westergård

B-E

Heia

(2014) Venner: En Bok for Mennesker Med Utviklingshemming Og Deres Hjelpere [Friends: A Book for People With Developmental Impairments and Their Helpers]. Oslo: Universitetsforlaget.

46.

WHO (2001) International Classification of Functioning, Disability and Health: ICF. Geneva: WHO.

47.

Wiesel

Bigby

(2016) Mainstream, inclusionary, and convivial places: Locating encounters between people with and without intellectual disabilities. Geographical Review 106(2): 201–214.

48.

World Health Organization (2019) ICD-11 browser. Available at: https://icd.who.int/browse11 (accessed 03 February 2024)

What is the role of public libraries and books in the everyday lives of adults with intellectual disability?

Abstract

Keywords

Introduction

Background

Public libraries as meeting places

Reading

Adapted books in Norway

Methodology

Procedure

Participants

Ethics

Data analysis

Findings

RQ1: Using public library services

RQ2: Reading

RQ3: Adapted books

Discussion

Conclusion

Footnotes

Acknowledgements

Declaration of conflicting interests

Funding

ORCID iD

Author biography

References

RQ₁: Using public library services

RQ₂: Reading

RQ₃: Adapted books