Participants
Fourteen parents of people with autism took part in the study. Sixteen people agreed to take part but two people were unable to make the available dates. All of the participants were female, with a mean age of 42 and a range of 10 years, they were largely well educated, and involved in a range of activities (such as volunteering) in relation to autism, see table 1.
Table 1
participant information
Participant
pseudonym
|
Gender
|
Level of education
|
Source recruited from
|
Jennifer
|
Female
|
In college level further education
|
SIGN patient network
|
Ruth
|
Female
|
Secondary school qualifications
|
Snowballing
|
Susan
|
Female
|
Secondary school qualifications
|
Carers Centre
|
Lisa
|
Female
|
Undergraduate degree
|
SIGN patient network
|
Angela
|
Female
|
Postgraduate degree
|
CAMHS
|
Diane
|
Female
|
Higher National Diploma (HND)
|
Carers Centre
|
Carol
|
Female
|
Postgraduate degree
|
Snowballing
|
Karen
|
Female
|
Undergraduate degree
|
SIGN Facebook
|
Michelle
|
Female
|
Secondary school qualifications
|
Snowballing
|
Patricia
|
Female
|
In college level further education
|
SIGN patient network
|
Jill
|
Female
|
Undergraduate degree
|
SIGN Facebook
|
Rachel
|
Female
|
Undergraduate degree
|
Carers Centre
|
Mary
|
Female
|
Higher degree
|
SIGN Facebook
|
Heather
|
Female
|
Postgraduate degree
|
SIGN patient network
|
Findings
Usefulness and value
There was agreement from most parents that the guideline would be a valuable resource for families of children with autism, particularly at the time of assessment and diagnosis. The parts of the guideline that parents found most useful included, information on their child’s health condition, tools and tests used for assessment, information on interventions, what to expect from healthcare professionals and services at each stage of diagnosis, and signposting to sources of information and support.
Parents suggested that the public version empowered them to ask informed question of healthcare professionals and to participate in shared decision-making. Information was valued, even if it was not linked to a recommendation, because it could be used in discussions with healthcare professionals and to highlight specific services/treatments (see Fig. 1). This type of information most useful when it contained ‘tick boxes’, or other interactive tools.
“… it [Fig. 1] tells you what the professional should be doing…I would probably refer back and say “well, I don’t think we’ve discussed X, Y or Z, so can you give me some more information about that”…[it] is a daunting process, for anyone, so the more information you can have the better.”
- Rachel
The ‘Where can you find out more?’ section provided a list of trusted sources of help and information. Parents wanted local support information, but this could not be provided in a national guideline. Signposting to national and third sector organisations may be the best way that a national body can meet this need.
Usability
The number of text boxes (see Fig. 2) used in this version, sometimes three or more on a single page was confusing for parents. Chunking [22] via a mixture of simple text, bullet points and boxes or icons on each page breaks up the text in a more usable way.
Parents highlighted the importance of the consistent and meaningful use of colour. In SIGN public versions, recommendations are green, which is associated with safety or ‘go’. Information boxes are highlighted in blue (see Fig. 1), which parents linked with information road signs. Inconsistencies in the use of colour, such as too many coloured boxes on one page, or text that seemed unrelated appearing in the same colour boxes, was overwhelming for some parents.
SIGN uses a system of icons with text to flag recommendations and their evidence level (see Fig. 3). Parents found the use of thumbs up, tick and question mark symbols clear and easy to understand. However, the response to the underlying four levels of evidence was mixed. Some parents appreciated the level of detail offered by the grades, and others thought it would be sufficient simply to know that SIGN recommended an intervention.
“I think, I suppose it’s saying ‘its ok’, - based on research, based on clinical. I would say probably your Joe Public will just think it’s one in the same thing, they’re not going to be differentiating it at all.”
-Diane
While the parents understood the essential message of the evidence levels, that one intervention is strongly recommended and another one less strongly recommended, most did not understand why it is necessary to have these different levels of recommendation. Similarly, parents found the use of the not enough evidence icon (see Fig. 3) disconcerting. While they understood that the question mark and text was meant to convey uncertainty, they did not like this message, or understand why guideline producers would need to use it.
…to the lay person….what makes one good quality you know if it’s basing it on evidence surely it should be of a certain quality otherwise why would you use that recommendation…surely all research should be good quality and if not why not? - Michelle
Credibility
Parents valued the public version because they saw it as a trusted and credible source of information. Its credibility arose from the simple and clear description of the process used in the development of the guideline (See Fig. 4) and the evidence-based nature of the recommendations.
“… read it [Fig. 4] and know that that’s how the process has been gone through and the information that is there has been, like accredited, if you like and you’d feel confident that it had gone through all the relevant stages to know that that’s the most up-to-date information to use.” - Rachel
The simple information provided on the process of guideline development reassured the parents that the public version was based on up-to-date evidence. While some people would have preferred more detailed information, this was sufficient for the majority of parents, and considered too much information by some.
Patient and carer input in the guideline development process was key to the relevance and credibility of the recommendations. Patients and carers are involved in SIGN’s guideline development process, including representation on the guideline development group, and this is mentioned in the information provided in the public version. However, this information was not salient enough for all the parents and needs to be made more detailed and prominent.
For some of the parents, it would have been reassuring if a larger group of carers and people with autism had been even more actively involved in the guideline development process to ensure that the included information was not too medical in orientation and was meaningful and actionable for carers. In the quote below, Jill explains why the more active involvement of a group of parents in the recommendation development process would be reassuring.
I kind of glossed over that [key to levels of recommendation/evidence] to be honest…Ok so there are four different types of recommendation, and it’s SIGNs recommendations. Yeah, it’s clear, but I don’t really know who SIGN is so I don’t know if I trust their opinion. Whereas if you had a body of parents and carers…who have given their thumbs up, double thumbs up, question mark or ‘dubious about that, cause that’s what the doctors say but it’s nonsense in real life’ that would probably hold more weight for me personally...
– Jill
Concerns regarding the status or enforceability of the guideline were evident. Parents wanted to be able to use it to discuss their options with healthcare professionals and to make a case for receiving the recommended interventions. Therefore they wanted to know if the guidelines were enforceable and what they could do if their children’s’ care was not in line with the recommendations.
…I see all the recommendations, and realise that actually, it doesn’t happen… if you read this, and this isn’t happening, what can you do?...because [it is] all very well having the guidelines, but if they’re not being adhered to where does that leave you as a parent, can you just wander down and go ‘here, I’ve got these guidelines’ and they can say well actually I don’t have to do that….
-Michelle
Desirability
The quality of the design and presentation of the material is key to making any public version desirable. For the parents of children with autism, the use of inclusive and sensitive language and terminology was especially important. The tone should be collaborative, positive and reassuring; however, this must be balanced by the need to convey information clearly, some of which may be perceived as negative or ‘scary’.
…a lot of the language I like, because in many things they talk very much about autism as ‘they’ as if they’re some sort of strange distant individual. It seems much more collaborative…especially the bit where it talks about occupational therapist that they’re people who can ‘help’ I think that’s very good language, because sometimes it’s the word “treat”...
-Karen
Terminology can pose a significant barrier to the desirability and the credibility of a public version. Terms used to describe people with autism, provoked a strong emotional response. Parents preferred terms that that they recognised, from their child’s diagnosis, from patient information sites or social media pages for carers. They had different preferences such as ‘autistic person/child’, ‘with autism’ or ‘having autism’. Another example of emotive language was the term anti-psychotic, used in a recommendation about medication. Additional contextual information, which acknowledges some of these issues, might help to make this recommendation less off-putting.
…a lot of people see the word anti-psychotic and go ‘why are you giving my child antipsychotics, they’re not psychotic, what’s going on’…a little bit more background as to it’s a particular kind of medicine that is used for certain behaviours and don’t let the word scare you… you know so that’s a big vague...
- Mary
The inclusion of quotes from parents helped to personalise the material and make the information less medical in tone. Parents felt they could relate to the quotes, and that they helped to normalise their fears around diagnosis. Quotes also posed a potential risk to the desirability and accessibility of the booklet because what may personalise the material for one person may feel alienating to another. Parents of girls felt excluded by the majority of quotes referring to boys names. Some parents liked the supportive or emotional tone of the the quotes while others would have appreciated a more practical orientation to them.
….I think the ones on page 5, as I said, about gender when you see two quotes, both of boys again you think “oh here we go”…maybe just a few quotes about how you would get through the medical process or “yes the waiting times are long, but …” that sort of thing. I think a lot of the quotes are sort of emotional quotes as opposed to maybe practical quotes. – Karen
Accessibility and findability
Parents highlighted the need to have the public versions available in multiple formats to maximise accessibility and findability. This includes, as a minimum, availability online and as hard copies. Availability online helps people to find the guideline and make sharing the booklet with peers easier. Making hard copies of it available makes it accessible to people who do not routinely have access to the internet, and allows distribution directly by healthcare professionals, which was the strongest preference for distribution expressed by the parents.
…it would be even more appealing if the practitioners…introduced it to the family…it could be available in for example things like that first developmental assessment…because you do go away with nothing generally. And then the risk is a lot of people resort to doing Google searches and getting all sorts of stuff. – Angela
A potential barrier to parents finding and using this public version was confusion about its exact purpose. The SIGN logo and accompanying text saying ‘Scottish guidelines’ was printed on the front cover and more information on who the booklet is designed for was given on page 2. Despite this, it was not clear to all of the parents that this was a version of a clinical guideline that had been designed specifically for parents and carers of children with autism. This can lead to confusion about why this booklet would be helpful for them and how and when they would be able to access it.
Implementing the user testing findings
Many of the suggestions made by parents led to changes to the final version of the booklet. For example, the font size was increased on the banner on the front page; the title was amended to include the word ‘families’; and a sentence thanking parents and carers that contributed to the consultation of the booklet was moved to the inside cover to make their involvement salient. The final version of this guideline, which incorporated the results of this user testing is available on SIGN’s website [23].