TABLE 3.

Themes, description, frequency count and supportive quotes of what parents wanted to be included in an online BSI for parents of CWE (based on n = 9 parents).

Theme name	Theme description	Number of parents reported by	Example quotes
Other parents’ views and experiences	Access to other parents’ views or experiences (about parenting, sleep, interventions) were valued highly because other parents had first-hand experience and was seen as an essential aspect to include in the intervention	8	“I find it really helpful when you get stories from other parents who’ve tried things and if they’ve worked” (P4) “The real experiences from other parents” (P5) “I would more listen to other parents who would who have tried something, whether they had scientific research to back it up, if they said, ‘this has worked for my son’ and he’s got the same thing as (child) has, I think well it’s worth a go, I’ll give it a go” (P4) “It’s really nice to see or hear…or even read an excerpt from a parent” (P3)
Change over time	The need for any suggestions for behaviour change techniques to acknowledge that there are changes over time (in terms of the child’s epilepsy, age, the family’s anxieties) and that these affect the applicability of use of different techniques at different times	8	“Yeah, because it does massively change because I feel totally different to when he was first diagnosed. It was just none of us were getting any sleep at all. It was just really stressful” (P4) (in response to issues with putting things into practice) “I suppose it depends on…every child’s different aren’t they, and I think it probably just depends on your child and the age of your child” (P1) “That was the real crux of (child’s) changing and his sleep patterns was and that’s the year he really, really struggled was the change from primary school to secondary school, which apparently is meant to be one of the biggest things in a kid’s life anyway” (P2) “But what I would like to change, what I would maybe think about if and I’m thinking about it now because maybe the time will come and she will want to sleep alone, but maybe sleeping on her own would be something I would like to yeah try but not now with her epilepsy, no I wouldn’t give it a shot now” (P5)
Range of management options	That any suggestions for behavioural change techniques should be non-prescriptive but rather should give parents the ability to choose from a range of techniques, depending on what suited their individual child and/or circumstances	7	“if there was a website there to help you, to say ‘try this or try this or, you know, different things’… Because obviously different things work for different people. But you know if there was one kind of point you could go to get all of that advice that would have helped” (P4) “Here’s some things and see what fits in, what can you fit into your family, your circumstances, because the children will be at such a variety of ages” (P3) “If it’s an option then I would try to read through it” (P5) “So yes I think maybe almost like a spiders web isn’t it, so you have one and then it goes off and off and off. But you can still sort of come back in…:” (P2)
Personalisation of information	Parents had a desire to be directed to content which was personalised to the individual child and/or family needs as far as possible	6	“I think personalising it would make it more, have more of an impact. I mean at the end of the day the chances are if you’re reading about the intervention or being involved in the intervention then something going to resonate with you in that” (P1) “It would actually get me hooked up… to answer the data about my child and so that it pops up what kind of situation do we have so that it narrows down the data or narrows down the sort of text that I have to read…it would work for me” (P5) “Signposted to the most relevant part for yourself but then so if you [want], you know, this is available” (P3) “You also hope that by entering your problems…it’s the most interactive way to talk to the internet…you get some kind of answer” (P5)
Child anxiety around sleep	Many parents reported that their child struggled with anxieties around sleep. Either in relation to fear of sleep due to their epilepsy or as sleep being a time when anxieties or concerns were expressed. Some parents specifically desired information to help them support their child(ren) with any anxiety or fears around sleep	6	“He was having a lot of difficulty sleeping because he was worried that if he went to sleep, because we had quite a few instances where he went to bed as normal and when he woke up he was in hospital…he had a massive fear that he was going to die in his…sleep, so I think that’s, it’s not just the seizures, it’s the emotional side of it as well” (P2) “She does worry about things and it all seems to come out, you know, as it does I suppose you get into bed and you think about everything” (P7) “Maybe some sort of tool to talk to him about it” (P1) “It’s very hard and we’ve really tried but I know my husband has accidentally said it before. It’s very hard so if she’s resistant to want to go to bed he says ‘well (child) now look you know you need to go to bed early because you know because of your seizures you know’ and then you don’t want to bring it into that just before you go to bed” (P3)
Practical sleep intervention suggestions	Desire for practical suggestions for ways in which they could make changes to their child’s sleep	6	“I just want the end result of what to do…Get to the point, what do I need to do” (P7) “I think the main thing is, I think, to consider is it’s got to be something you can work around other family members” (P3) “So I think practical things as well help for reassurance for him and for us as well, yeah” (P2) “I think just practical stuff might be useful” (P6)
General sleep information	General sleep information (i.e., about normal sleep and the link between sleep and seizures) as well as specific “intervention” advice. Some parents had not been advised about the possible link between sleep and seizures while others were told by clinicians that good sleep was important for CWE but were not advised of ways to address child sleep	6	“Not anything that had ever been brought up or even asked…So no no one’s ever said anything about sleep” (P2) “I just Googled and Googled…for all different like helps and things like that to kind of help them” (P4) “I’ve done so much research online it’s ridiculous but it’s just like I’ve just sort of found out myself really that I try” (P7) “Sleep is the one thing that we can do, help. But then not really much assistance comes along with that at that point of diagnosis so it’s kind of, you know, you’ve got to be having 10 h, you’ve got to be getting them to sleep early and especially for children that are my daughters age, so 10/11, you’re talking quite a bit of a lifestyle change really for them” (P3)
Parental anxieties and concerns	For parents’ worries and concerns (about sleep, epilepsy and intervention approaches) to be acknowledged, even if these concerns could not all be resolved	6	“The problem for us is…that it’s us that are scared of leaving him in case he has a seizure so in regards to monitoring sleep I don’t really, you know, we’ve thought about putting a camera in his room and things but that would, we’d just be sat watching the camera” (P1) “….because you’re aware of these issues and, I think, as a parent to know that it’s been flagged up, that I’m not just being overreacting or being paranoid about letting my child go to a sleepover… Yeah, I think that would be nice, just to acknowledge it and say actually ‘no, there are other parents out there that either don’t let their child go to a sleepover”’ (P2) “I got so used to waking up and having to go into him, if he has a good night I become anxious and have to go through and check he is OK and still breathing” (P9) “I do sleep like a rabbit and I hear her every move and in her every move and every episode that she has during the night I am looking for signs that it might be a seizure” (P5)
Help, support and reassurance around sleep	That information about child sleep (typical and atypical), how to manage it and how this relates to others’ experiences would be reassuring and help parents feel supported. For some parents this was particularly needed at the time of diagnosis	4	“Having, yeah, reassurance I think, or even, yeah, just guidelines or something kind of like, this is what you can try for your child…” (P2) “It’s just so nice to know that there’s sort of someone out there who’s trying to do some research and trying to put things out there to help” (P1) “Because at the point of diagnosis they said this is, you know, the one thing you can do (sleep). It feels more pressured… more challenging, because you feel that it is the only thing you can do” (P3) “It was just really, really stressful [when first diagnosed] so any kind of assistance then would have been massive because I spent hours and hours on the internet like researching different things” (P4)
Include the child in intervention	Some parents felt that the child’s perspective, voice and/or feelings should be acknowledged in the intervention. It was seen as important that children’s perspectives about sleep had been considered and were included as they, and their needs, are central	4	“I think from a child’s point of view it’s very important too and maybe it would be even worth you interviewing some children about this because I don’t think they get their say about how they feel or how they would want to cope with it as well.” (P2) “I’ve noticed a lot of information that you get given is only aimed at the parents, if you get given anything, any kind of…leaflet or whatever this is for a parent of the child who has epilepsy and (child) is like, well, I’ve got it why am I not getting any information, why have they not given me anything to read…” (P6) “She is at an age now where yeah. But she, yeah, I think there should be information for both of us” (P7) “For the older children you should have some advice for them, the children as well so they can be part” (P9)