**4. Evaluation and results**

The evaluation was done through a survey distributed to staff and parents at the department and through a group interview with staff members. The survey was part of the general evaluation activities that was completed on all clinics involved in KomHIT and will not be reported here. The group interview used a semi-structured format along the lines of focus group methodology [23] and a content analysis of the transcripts was carried out to identify categories and main themes [24].

#### **4.1. Participants**

The participants in the focus group study was recruited from the department working with young pre-school aged children on the child neuropsychiatric clinic at Queen Silvia Children's Hospital, a regional specialist hospital in Sweden. This department was selected since the vast majority of the patients had communicative problems, were in need of communicative support that was only occasionally provided before the intervention started. An invitation letter with information about the interview was distributed to the entire staff at the department. A group of six staff representing five professions was recruited. Participant data is presented in table 2.


**Table 2.** Participants

The initial purpose was also to carry out a group interview with parents. Although many parents were positive to participate in such an interview this idea finally had to be put off due to practical problems.

#### **4.2. Procedure**

The group interview was carried out by the second and third author. One interviewer had the role as moderator and was responsible for introducing new topics and lead the interview, and also to hold a short summary at the end of the interview. The second interviewer was respon‐ sible for the sound recording and took notes during the interview. The sound recording was carried using an iPhone 4 with iOS 7 and a Samsung Galaxy S4 with Android version 4.3. A pilot interview was first completed to practice the allocation of roles and responsibilities. Four speech language therapy students was interviewed of how the speech language therapy program prepares the student for working life.

The interview took place at the neuropsychiatric clinic. The participants all filled out a consent form also containing a question about their earlier experiences of pictorial supports. An interview guide was used. The issues were linked to the survey the staff recently had com‐ pleted and focused the health professionals', parents' and children's views about the KomHIT materials. The children's and parents' degree of anxiety and possibility to be active and to participate during care and through the use of pictorial support was also discussed. The guide was used as a support for the moderator to hold the group on focus and in presenting the issues. Open-ended questions were used. A stimulus material consisting of examples of the pictorial supports, was placed on the table to help the participants stay on focus [23]. The moderator redirected the discussions when they were considered as drifting away too far from the targeted topics. At the end of the interview, the moderator summarized what had been said and the participants were given the opportunity to make clarifications [23]. The interview lasted for approximately one hour.

#### **4.3. Transcription and analysis**

**4. Evaluation and results**

300 Autism Spectrum Disorder - Recent Advances

categories and main themes [24].

**4.1. Participants**

**Table 2.** Participants

**4.2. Procedure**

to practical problems.

The evaluation was done through a survey distributed to staff and parents at the department and through a group interview with staff members. The survey was part of the general evaluation activities that was completed on all clinics involved in KomHIT and will not be reported here. The group interview used a semi-structured format along the lines of focus group methodology [23] and a content analysis of the transcripts was carried out to identify

The participants in the focus group study was recruited from the department working with young pre-school aged children on the child neuropsychiatric clinic at Queen Silvia Children's Hospital, a regional specialist hospital in Sweden. This department was selected since the vast majority of the patients had communicative problems, were in need of communicative support that was only occasionally provided before the intervention started. An invitation letter with information about the interview was distributed to the entire staff at the department. A group of six staff representing five professions was recruited. Participant data is presented in table 2.

**Participant Gender Profession**

P1 ♂ Physician

P2 **♀** Psychologist

P4 **♀** Special educator

P6 **♀** Special educator

The initial purpose was also to carry out a group interview with parents. Although many parents were positive to participate in such an interview this idea finally had to be put off due

The group interview was carried out by the second and third author. One interviewer had the role as moderator and was responsible for introducing new topics and lead the interview, and also to hold a short summary at the end of the interview. The second interviewer was respon‐ sible for the sound recording and took notes during the interview. The sound recording was carried using an iPhone 4 with iOS 7 and a Samsung Galaxy S4 with Android version 4.3. A

P5 **♀** Nurse

P3 **♀** Speech language therapist

The audio recordings from the interview was transcribed ortographically. Focus was on content rather than interaction patterns. The transcription was done at Level III, which meant that the utterances were transformed to complete sentences that began with a capital letter and ending with appropriate punctuation. Unfinished sentences, repetitions and hesitations were removed. Pauses and laughter was not marked [23]. Transcription Level III was chosen to facilitate for the participants to read through the transcription. The authors transcribed half of the sound recording each and then read through each part of the transcription, and compared with the audio recording. As a final step the authors listened to and discussed the pieces that were difficult to hear until consensus was reached. In the transcripts, participants were given a code and the names of individuals and entities were removed. The transcription was sent to the participants who had the opportunity to read, review and then approve it. Participants had a week to come back with changes. Participants were only allowed to revise their own utterances. The revision process proceeded until the participants were satisfied. One of the participants clarified some opinions, but did not remove any information. No other changes were made.

Qualitative content analysis according Graneheim and Lundman [24] was applied as a method of analysis. In the present study manifest content, ie content that is expressed directly and does not need interpretation, was in focus. Each step in the analysis was conducted jointly by the authors. To get an overview and to obtain an overall impression the authors began by reading the transcript several times. The transcription was inserted into a table in a word processing program and then divided into meaning-bearing units. This meant that utterances involving several topics were divided into smaller units. Utterances that was on other topics or lacked relevant content was deleted from the analysis. In case of disagreement about this, the authors listened to the audio recording until consensus was reached. The meaning-bearing units were then condensed with the purpose of obtaining the core without affecting the content. The next step was to code the condensed units. The codes were printed, spread out on a table and then grouped in different categories based on their content. As the last step in the analysis, the categories were grouped together to form themes. When disagreements arose the authors first consulted the transcription and as a next step the audio recordings and discussed until consensus was achieved.


**Table 3.** Overview of the process of the content analysis and two examples

Credibility in this qualitative content analysis concerns how well the themes and categories were consistent with the transcribed data. One way to show this that also was used in this text, is to present representative quotations from the transcribed material [24]. This means that the data processing is presented in an explicit and transparent way, which facilitates the exami‐ nation of the credibility [25]. An external check of the analysis was also conducted [23]. A senior speech language therapy student read twenty percent of the transcription and compared the content to the analysis and the identified codes, categories and themes. The external assessor found that the identified themes and codes were in concordance with the text except for one utterance that the authors had excluded as not being relevant. This was taken into account by the authors, who returned to the audio recording to ensure proper assessment.

#### **4.4. Result**

The content analysis of the interview data resulted in 18 identified categories that could be merged into 7 themes. These were: pictures used preparatory before healthcare visits, pictures used during healthcare visits, design, use, guidance, reactions in children, and the need of pictures in health care (see Table 4). Each theme and the included categories are described below in the text and used as titles. Examples from the transcribed texts, printed in italics, are presented for the majority of the categories.


**Table 4.** Themes and categories identified in the content analysis

#### *4.4.1. Pictures used preparatory before health care visits*

#### *4.4.1.1. Support for parents*

then condensed with the purpose of obtaining the core without affecting the content. The next step was to code the condensed units. The codes were printed, spread out on a table and then grouped in different categories based on their content. As the last step in the analysis, the categories were grouped together to form themes. When disagreements arose the authors first consulted the transcription and as a next step the audio recordings and discussed until

Credibility in this qualitative content analysis concerns how well the themes and categories were consistent with the transcribed data. One way to show this that also was used in this text, is to present representative quotations from the transcribed material [24]. This means that the data processing is presented in an explicit and transparent way, which facilitates the exami‐ nation of the credibility [25]. An external check of the analysis was also conducted [23]. A senior speech language therapy student read twenty percent of the transcription and compared the content to the analysis and the identified codes, categories and themes. The external assessor found that the identified themes and codes were in concordance with the text except for one utterance that the authors had excluded as not being relevant. This was taken into account by

The content analysis of the interview data resulted in 18 identified categories that could be merged into 7 themes. These were: pictures used preparatory before healthcare visits, pictures used during healthcare visits, design, use, guidance, reactions in children, and the need of pictures in health care (see Table 4). Each theme and the included categories are described below in the text and used as titles. Examples from the transcribed texts, printed in italics, are

the authors, who returned to the audio recording to ensure proper assessment.

**Codes Categories Themes**

Preparation Pictures

Pictures in other areas of care

before visit

The need of pictures in health care

The information letter demystifies

Pictures should be used within geriatrics

consensus was achieved.

302 Autism Spectrum Disorder - Recent Advances

I think it helps to play down also it is not so mysterious.

But it is only within pediatric care you are thinking. Because I belive in geriatrics and in care for the elederly, as they get old, there must surely be. I believe

this would be great.

**4.4. Result**

**Meaning-bearing units Condensed**

**units**

**Table 3.** Overview of the process of the content analysis and two examples

presented for the majority of the categories.

It helps in making it more concrete and less mysterious

I'm thinking of care for the elderly, when people are older this would be useful .

> The staff thought that the pictures was a support for the parents. The staff expressed the opinion that the parents' anxiety seemed to be reduced when they had been provided with the invitation letter with pictures and then had more information about what was about to happen during the visit. The pictures seemed to serve as a tool for the parents to explain what will happen to their children. The staff expressed that the invitation letter could play an important role for parents of young children and also for parents with insufficient understanding of Swedish.

*"... I mean it is a support for the parents as well, explaining to the children, in that they have access to the pictures, so in that way I believe it's very positive."*

#### *4.4.1.2. Preparation*

The nursing staff thought the invitation letter made both children and parents feel safe because they know what will happen and who they are going to meet. The staff experienced that the parents were more prepared and better informed. The invitation letter made the visit less mysterious.. According to the staff, several parents had expressed that they appreciated the pictorial invitation letter.

*"We really enjoyed to look at the pictures and checked, what's going to happen, well who is this, and so on. I believe this actually is good."*

#### *4.4.2. Pictures used during health care visits*

#### *4.4.2.1. Pictures in waiting room*

Only a few of the staff had used the waiting room boards, but told that some parents had commented that the pictures were funny and that the children liked them. These boards may not be have been used in the best interest of the children because the parents were not accustomed to the use of pictorial support. The staff stressed that in spite of this the pictures still were important in demonstrating an approach to support communication.

#### *4.4.2.2. Impact on testing*

Some of the staff felt that the use of pictorial support could influence the evaluation and testing results. The perception was that the pictures facilitated the testing too much so that the purpose of some of the tests could not be fulfilled. The staff expressed that during the assessment of the child's communication skill the pictures should be used to enable the child to participate in the test situation but not to communicate. However, in some test situations pictures could not be used at all. Pictorial support was considered to be easier to use in a treatment situation.

*"I can imagine it [visual schedule] would affect the ADOS-result. One would think, but if he had not pictorial support how he had reacted when..."*

#### *4.4.2.3. Learning*

Most children and parents were unfamiliar with the use of pictorial supports. The staff expressed that it was problematic that they saw the children only occasionally and too little to really have them understand the use of the pictures, specifically those at early developmental stages. The staff thought it was easier for the children and parents to understand the use of the pictures if they consistently were provided with pictorial support in invitation letters, waiting rooms and personal interaction. The staff thought the children could gradually learn the meaning if they were recurrently exposed to the pictures and if the staff used a rich body communication to assist the children's understanding.

#### *4.4.2.4. Structure*

The staff felt that they did not need to use the visual schedule so often, but that it was great to use with children who have attention difficulties. For these children, the pictures provide structure and help to focus. The children also are provided with a concrete idea of how far they have proceeded during the visit.

*"... And said, yes, but we're going to do this, and lined up the pictures so that the child can imagine. Yes now we can remove this, now we can take that one away. Then they are assisted in coping".*

Staff however also had the opinion that the pictures sometimes made them less flexible. They felt that they had to stick to the schedule, even when it was less well adapted. When they used pictures that were not so specific, it was easier to change the order during the visit.

#### *4.4.2.5. Participation*

*"We really enjoyed to look at the pictures and checked, what's going to happen, well who*

Only a few of the staff had used the waiting room boards, but told that some parents had commented that the pictures were funny and that the children liked them. These boards may not be have been used in the best interest of the children because the parents were not accustomed to the use of pictorial support. The staff stressed that in spite of this the pictures

Some of the staff felt that the use of pictorial support could influence the evaluation and testing results. The perception was that the pictures facilitated the testing too much so that the purpose of some of the tests could not be fulfilled. The staff expressed that during the assessment of the child's communication skill the pictures should be used to enable the child to participate in the test situation but not to communicate. However, in some test situations pictures could not be used at all. Pictorial support was considered to be easier to use in a treatment situation. *"I can imagine it [visual schedule] would affect the ADOS-result. One would think, but*

Most children and parents were unfamiliar with the use of pictorial supports. The staff expressed that it was problematic that they saw the children only occasionally and too little to really have them understand the use of the pictures, specifically those at early developmental stages. The staff thought it was easier for the children and parents to understand the use of the pictures if they consistently were provided with pictorial support in invitation letters, waiting rooms and personal interaction. The staff thought the children could gradually learn the meaning if they were recurrently exposed to the pictures and if the staff used a rich body

The staff felt that they did not need to use the visual schedule so often, but that it was great to use with children who have attention difficulties. For these children, the pictures provide structure and help to focus. The children also are provided with a concrete idea of how far

*"... And said, yes, but we're going to do this, and lined up the pictures so that the child can imagine. Yes now we can remove this, now we can take that one away. Then they are*

still were important in demonstrating an approach to support communication.

*if he had not pictorial support how he had reacted when..."*

communication to assist the children's understanding.

they have proceeded during the visit.

*assisted in coping".*

*is this, and so on. I believe this actually is good."*

*4.4.2. Pictures used during health care visits*

*4.4.2.1. Pictures in waiting room*

304 Autism Spectrum Disorder - Recent Advances

*4.4.2.2. Impact on testing*

*4.4.2.3. Learning*

*4.4.2.4. Structure*

The picture schedule seemed to facilitate participation for some children during examination or testing. The pictures could be used to direct the children's attention to something and to have children who were restless to sit down. Staff discussed that the situation could be perceived as less demanding when pictorial tools were used. A picture schedule was consid‐ ered to give children control over the situation. Through the use of images the children had freedom to express what they wanted to do. The images had enabled communication between children and the staff, and had been used by the child to ask questions.

*"And a little control of the situation as well, then you do what he picture says, and will not come up with something else that I do not know what it is. And you have the freedom of saying, that and that, and that I do, but not this."*

#### *4.4.3. Development of materials*

### *4.4.3.1. Digital pictures*

Having access to pictures using a smartphone or tablet was considered to simplify the work. Being able to find exactly the correct one quickly was seen as an advantage. Children who were not interested in pictures might think they were more funny and interesting if they were presented on a phone or tablet. However, the staff also discussed the risk that the tablet could be associated with gaming or play. Therefore alternate forms for presentation of the pictures are needed for different children.

#### *4.4.3.2. Form*

The group also discussed the size of the images and some thought that the images being used were too small. Size and degree of detail of the pictures differs on an individual basis. The nursing staff did not think that it was necessary to use a particular or specified picture/symbol system but that it instead was the way of thinking that was important.

#### *4.4.4. Use*

#### *4.4.4.1. Developmental and pictorial level*

The staff thought that the pictures they used right now worked best with the children at more advanced level of development. For children at earlier stages, it could be difficult to understand the picture and associate it to the activity. Options should be available that would be more easy to use for these children, such as photographs and objects. The staff had the idea, that to be able to use a picture as a resource, it is not necessary to have a full understanding of the picture. To be able to focus the picture is more important. The staff must be quick in deter‐ mining whether pictures would work for a specific child. Staff expressed that it was difficult to find and use pictures for more abstracts concepts.

*"... Sometimes it doesn't mean anything to the children, the young children /... /are sometimes on a concrete level..."*

#### *4.4.4.2. Opportunities of usage*

The staff discussed during which occasions the pictures were best used. Some had the opinion that the picture schedules were difficult and unnatural to use for testing or assessment. Instead they were considered to be easier to use during intervention and more concrete activities, such as weighing and measuring the child. In some situations pictures were not used at all by the staff, either because an enhanced use of body communication was considered sufficient or that the sometimes long experience of working with children with neuropsychiatric disorders made them manage without. On the other hand experience in using pictures was considered to facilitate the use of pictorial support:

### *"but I believe that it is good if you use it (pictorial support) continuously to feel comfortable and relaxed"*

The opinion of the staff was that pictures was a great resource for those children who had difficulties with eye-gaze contact. To jointly watch the pictorial aid could be a way to establish contact without the need of direct eye-contact. The transition from the waiting-room to the examination-room was also considered to be facilitated through the use of pictures.

#### *4.4.4.3. Pictures as a resource*

The staff thought that the pictures generally made their work with the children easier. The pictures were looked upon as a resource or a tool that could be used when there was a need, for example when they got stuck out of some reason. Pictures did not always help out in these situations, but on the other hand never did any harm either

*."... It is a privilege to have this resource and it is such a useful aid..."*

#### *4.4.5. Guidance*

#### *4.4.5.1. Healthcare professionals as models*

The staff felt that they could act as models for the parents so they could observe how pictures could be used in interaction with their children in everyday life. When the staff used pictures, this no longer seemed so strange or dangerous. The staff expressed that the parents often became positive when they could see themselves how the use of pictures facilitated the staff's communication with their child.

*"... And see that it actually increases, yes it may well increase the child's understanding and ability to come up with something and show..."*

#### *4.4.5.2. Generalisation*

mining whether pictures would work for a specific child. Staff expressed that it was difficult

*"... Sometimes it doesn't mean anything to the children, the young children /... /are*

The staff discussed during which occasions the pictures were best used. Some had the opinion that the picture schedules were difficult and unnatural to use for testing or assessment. Instead they were considered to be easier to use during intervention and more concrete activities, such as weighing and measuring the child. In some situations pictures were not used at all by the staff, either because an enhanced use of body communication was considered sufficient or that the sometimes long experience of working with children with neuropsychiatric disorders made them manage without. On the other hand experience in using pictures was considered

*"but I believe that it is good if you use it (pictorial support) continuously to feel comfortable*

The opinion of the staff was that pictures was a great resource for those children who had difficulties with eye-gaze contact. To jointly watch the pictorial aid could be a way to establish contact without the need of direct eye-contact. The transition from the waiting-room to the

The staff thought that the pictures generally made their work with the children easier. The pictures were looked upon as a resource or a tool that could be used when there was a need, for example when they got stuck out of some reason. Pictures did not always help out in these

The staff felt that they could act as models for the parents so they could observe how pictures could be used in interaction with their children in everyday life. When the staff used pictures, this no longer seemed so strange or dangerous. The staff expressed that the parents often became positive when they could see themselves how the use of pictures facilitated the staff's

*"... And see that it actually increases, yes it may well increase the child's understanding*

examination-room was also considered to be facilitated through the use of pictures.

situations, but on the other hand never did any harm either

*and ability to come up with something and show..."*

*."... It is a privilege to have this resource and it is such a useful aid..."*

to find and use pictures for more abstracts concepts.

*sometimes on a concrete level..."*

to facilitate the use of pictorial support:

*and relaxed"*

*4.4.4.3. Pictures as a resource*

*4.4.5.1. Healthcare professionals as models*

communication with their child.

*4.4.5. Guidance*

*4.4.4.2. Opportunities of usage*

306 Autism Spectrum Disorder - Recent Advances

The nursing staff wished to have access to pictorial supports or tools for various activities and games to give to parents in facilitating generalization to the home environment. According to the staff, parents are in need of concrete support to be able start up in practice as soon as they showed that they wished or wanted to. This was also clearly expressed by the parents. The staff thought it would be easier to show how pictures could be used and to answer parents' questions if they could provide the parents with some ready-made materials.

*"Because they [the parents] kind of kick-offs mentally and get concrete ideas after they have had the opportunity to start up with something."*

The staff had the opinion that the generalization to the pre-school environment often was good due to the fact that many pre-schools already used pictorial tools. The staff only had to encourage these pre-schools in enhancing their use of visual support and sometimes also demonstrate the use.

#### *4.4.6. Reactions in children*

#### *4.4.6.1. Anxiety*

The nursing staff believed that the pictorial supports decreased anxiety in both children and parents. In particular, the pictorial invitation letter was considered to reduce the child's anxiety in that the child was provided with information about what was about to happen that was easy to understand. Sometimes when a child was anxious or restless the staff also could get back to this letter and go through what was going to happen. The staff was convinced that clear information reduced anxiety in children with autism. They also believed that pictorial support should be used with an increased number of children since most children would benefit from this.

*"... We do not know how much it reduces anxiety during some visits, I think. I think, for you, for example, you know when you to go to the nurse, 'oh they won't do anything that I don't allow, for example."*

#### *4.4.6.2. Interest*

The staff told that many of the children were very interested in the pictures. They were curious and perceived the pictures as fun and exciting. The staff expressed that the pictures added a sense of playfulness to the visits at their clinic.

*"It gets a little bit more exciting and appealing to kids when pictures are used in some way. They become more curious..."*

#### *4.4.7. The need of pictures in health care*

#### *4.4.7.1. The previous need for pictures*

According to the opinions of the staff there had been a need for pictorial support on the clinic long before the project was started. Parents had asked for photos of the staff and for information about what would happen during the visits. The staff had experienced difficulties in describing this in a concrete way, which now easily could be done using pictures in the invitation letter. The staff meant that texted information only, could not generate the same type of conversations between parent and child as now was the case. Without the pictures it was more difficult for the parent to explain to the child what would happen. Some of the staff had previously created their own pictorial support by drawing or using photos when they felt that this was needed.

*"And there was a need for this because I used to say to the parents when I met them the first time that you can take a photo of me with your phone and show to the child..."*

#### *4.4.7.2. Pictures in other areas of care*

The staff believed that the use of pictorial support was something that had come to stay within health care. They expressed that pictures would be good to use outside of pediatrics, for example within geriatrics, and with people with aphasia.

#### **4.5. Further research**

To further investigate the role of pictorial support in health care and within neuropsychiatric clinical work, it would be interesting to do a controlled group study comparing both commu‐ nication and other aspects of care with and without the use of pictorial support. Doing a similar study like this, but with a larger number of respondents and interviews with children, parents and health professionals from different clinics that strengthen and further develop these results, is also important. It would also be interesting to study and compare the results for different groups of children – of varying age, diagnosis, communication profiles-and for different activities and types of pictorial supports.

### **5. Conclusion**

This study is one of the first that describes an intervention aiming at increasing the commu‐ nicative rights of children within the autism spectrum during clinical assessment and inter‐ vention. The pilot evaluation in the form of an interview with the multiprofessional team provides valuable information on how work with pictorial supports can function in practice.

The staff was generally very positive and expressed that the pictorial supports facilitated communication. The materials made both children and parents better prepared for the visits and the clinical procedures. The children liked the concrete visual material that also seemed to provide them with a higher degree of control in the situation. The children were more focused when the pictures were used and both children and parents also seemed to be more relaxed. However, it also emerged that there are still shortcomings and that further develop‐ ment is needed. The staff expressed the opinion that it was easier to use the pictorial supports in concrete activities, such as medical procedures, compared to for example assessments. Children at really early stages of development could not benefit so much of the existing materials but instead probably are in need of a more individually adapted support, as are some other children as well. It was also possible to see that some opinions of the staff were contra‐ dictory. For example, it was expressed that they as professionals in the field did not need pictorial support very often, but that many more children than expected were in need of pictures. This might be a symptom of the fact that this was a new intervention that had not been used for long.

Finally and in spite of this, the staff expressed that the use of pictures "have come to stay", both at their own clinic but also elsewhere within health care. They meant that the number of people that benefit of the use of visual support are much larger than could be imagined.
