ANEXOS

Many of the older siblings and those with less severe CP were keen to discuss their dreams, both good and bad. They were able to articulate how bad dreams or nightmares, affected their sleep and were a cause of waking up. For some of the young people the content of their dreams was intrinsically linked to events and happenings of their daily lives. For instance, Willow (sibling) was at the time of data collection waiting for the result of a school entrance exam which would determine her secondary school placement.

“This is my dream catcher and it catches all my really bad dreams”

(Grace Baker, 13 years old, mild CP)

191 Interviewer ...so when you were doing the data collection with

the watch and diary, you’d had your exams, hadn’t you? I know in your diary you said that you’d had a dream about the school?

Willow Yes, that was the dream I had quite a lot.

Interviewer And what was that dream about?

Willow Well at [school name] the first day, like my favourite book character is Artemis Fowl and he was in the same school, and they were calling out the register and um… It’s embarrassing…

Interviewer It’s embarrassing?

Willow (laughs) And um… well I... he was, he was my lab partner, because we were in Science and um… I was quite pleased with that and on the way back, because it’s got these really steep steps I was asking ‘Are you really Artemis Fowl?’ and he like said ‘Yeah’, and then I fainted down the stairs! And it was… It was quite embarrassing!

(Willow Edwards, 10 years old, older sibling)

As mentioned by Willow in the excerpt above, dreams can often be recurring and persistent. When such dreams are nightmares or bad dreams this can be a source of worry and fear for young people which impacts on their sleep.

Interviewer So do you ever wake up during the night?

Joseph Only when I’ve had a bad dream or I’ve realised that I’ve been talking in my sleep.

[...]

192 Joseph ...and there is this set of really bad dreams I have.

It’s about me waking up, every time it gets slightly worse, but the first time I wake up and come down and the family was shiny green zombies dressed very smartly and every time it gets slightly worse.

The second time they were all creased, and third time they were quite scruffy and fourth time they went a darker shade and fifth time they had a couple of cuts, sixth time they had a bit of blood on them, seventh time they had loads of blood on them, eighth time they tried to kill me...

Interviewer Oh, that sounds scary...

Joseph I know, it’s just like a series of dreams.

Interviewer Yes and do you have these quite a lot?

Joseph Yes

Interviewer How often do you think?

Joseph Once every week.

(Joseph Cooper, 9 years old, younger sibling)

Nightmares or bad dreams not only interrupted the sleep of the young people but also infiltrated and affected their emotions when they woke and on occasion, memories of the dreams and the feelings invoked were persistent across time. Thomas (sibling participant) described a cyclical relationship between daytime worries or anxieties generating bad dreams at night which in turn negatively affected how he felt on waking.

Interviewer Do you ever get worried about things?

Thomas Mmm (nodding) mmm...

Interviewer Do you think that stops you sleeping?

193 Thomas Especially the night before when I had a really, really

bad dream.

Interviewer Right?

Thomas Which made me woke [sic] up with tears a bit.

Interviewer With tears?

Thomas And it took me quite a while to get them off my, to get them off my face.

Interviewer Oh… and can you remember what that was about?

Thomas I can’t remember now.

Interviewer Mmm...

Thomas Because I don’t want to talk about it.

Interviewer Ok, that’s ok

(Thomas Hughes, 7 years old, older sibling)

As will be discussed in the next section, anxiety, stress and worries were not only felt or recognised through the experience of bad dreams but were identified as directly affecting sleep by a number of the young people.

It was more difficult to gather information pertaining to dreams and nightmares from the young people with severe CP. A number of young people with severe CP did choose the word, or symbol depicting, nightmare when asked for reasons why they might wake up in the night, however, further details were then difficult to ascertain. On a couple of occasions when asked about dreams and nightmares the parent who was present during the interview commented that the young person might not understand the concept of a dream or nightmare.

Interviewer Can you tell me, Charlotte, can you tell me, do you have dreams when you are asleep? Do you have

194 dreams? [shows Charlotte the picture symbol for dream] Yes or no? [Holds out both hands, right hand for yes, left hand for no]

Charlotte [distracted and looking around] Aaiiiiii...aaiiiii...

Interviewer Have a think... Do you have dreams when you are asleep?

Charlotte Aaiiiiii [looks behind her towards her mum]

Interviewer Mum’s right there.

Mum You might have to explain what dreams are…

Interviewer Oh, right.

Charlotte Aaiiiiiiiiiii

Interviewer Shall I explain what dreams are?

Charlotte Aaiiiiiiii [continues to be distracted and looking to mum]

(Charlotte Appleby, 8 years old, severe CP)

It was difficult to know, from the interview with Charlotte, if she understood the concept of a dream or whether she was choosing not to answer or if she was simply not interested or too distracted to answer. I did later try to explain what dreams are by describing them as ‘stories in your head’ but Charlotte did not answer again. This illustrates the difficulty of interviewing young people with severe CP and gauging not only their level of understanding but also their levels of interest and engagement. The influence of parents during the interviews with, in particular, those young people who do not verbally communicate is also highlighted.

195 8.2.3 Stress, worry and anxiety

Venn and Arber (2008) comment that stress and worry is generally, and in their view mistakenly, considered a cause of sleep interruption solely for adults and not for children and/or teenagers. However, just as Venn and Arber (2008) found with their group of teenage participants, stress and worry was also discussed by a number of young people in the present study as something that hindered sleep. The young people often described worries and stress as reasons why it was sometimes difficult to fall asleep (as opposed to r easons for being woken up). Often the worries discussed revolved around school, friendships or as Ellen (sibling participant, 13 years old) commented ‘general stuff’, and also concerns for family members.

Interviewer Ok, and what other things might keep you awake or stop you from going to sleep?

Joseph Sometimes there’s the stuff with my Nan, but I don’t really want to tell you about that.

Interviewer That’s ok, you don’t have to tell me about that.

(Joseph Cooper, 9 years old, younger sibling)

As with dreams and nightmares many of the young people with severe CP, who did not verbally communicate, chose words or symbols related to feelings of stress, worry and anxiety when asked for reasons why they might not sleep but it was difficult to then obtain further details as to the cause of such feelings.

Interviewer What wakes you up Stanley or stops you sleeping?

[lays out picture symbols for Stanley to choose] Is it sometimes too noisy and that wakes you up, or are you sometimes thirsty, or are you worried?

Stanley [lays hand on ‘worried’ picture symbol]

Interviewer Ok, sometimes you are worried?

196 Stanley Hmmmmmm [taps ‘worried’ symbol again]

(Stanley Edwards, 7 years old severe CP)

It is interesting to note that after two different interviews in which the young person with severe CP chose ‘worried’ as a reason for not sleeping I added to my field notes that the parents present seemed surprised with their child’s choice.

As mentioned above, for siblings and young people with mild CP the reasons for them experiencing stress and worry that hindered their sleep was often discussed in general terms and as relating to school, friendships and family. Two young people, both siblings, discussed how sometimes they worried about their disabled sibling both during the day and also at night. Ellen and Willow both have brothers who have severe CP with additional health needs (Brian and Stanley respectively). The aspects relating to these additional health needs emerged as reasons for worry for both Ellen and Willow. For Ellen it was the worry of her brother Brian being sick in the night that concerned her.

This not only caused Ellen to worry, but when Brian was actually sick it often disturbed and woke Ellen, as described in more detail in the next section.

Willow worried about her brother, Stanley, having epileptic seizures, a worry that affected her during the day and at night. During the data collection period for the study Willow had witnessed her brother having a seizure, and although it was not the first time she had seen it happen, it was the first time she had been on her own with him.

Willow We were playing this game thing and we were trying to make his mini-robot do a cat walk and I went out to get something to measure, to make sure the... like it was the same all the way along and I thought I heard Stanley shout out and um… a big crash and I came back, all the things were like scattered and Stanley was on his side and he couldn’t move.

When I sat him back up he started crying…

Interviewer And how did that make you feel?

197 Willow A bit scared…. I didn’t know what to do.

Interviewer So what did you do?

Willow I just shouted until Mum came.

(Willow Edwards, 10 years old, older sibling)

For Willow sometimes the worry about Stanley having a seizure and being ill affected her during the day and impacted on her concentration at school but she also thinks about his ill health at night and this then influences her dreams.

Willow I worry about [at night] if he [Stanley] like gets ill... Or if he’s like finding it hard or if he’s a bit ill, I don’t know really… and then I just have this weird dream...

(Willow Edwards, 10 years old, older sibling)

Willow also had concerns for her brother’s safety and health at night in relation to proposed plans to move his bedroom downstairs, (which will be discussed in more detail in Chapter 9 on bedrooms).

For other siblings of children with severe CP, worries or anxiety about their disabled brother or sister did not feature or have an impact on their sleep.

For example, Daniel felt assured that it was not his role to worry about his sister at night and that if anything was wrong, his mum and dad would have the situation in hand.

Daniel I know mum and dad get up to her [his sister Libby]

and if there’s anything wrong they’ll find her…

(Daniel Cooper, 13yrs old, older sibling)

This section has outlined how stress, worry and anxiety did feature as a reason for sleeplessness for children with and without CP. Two children with severe CP chose the picture symbol for ‘worried’, however, details regarding

198 this choice were difficult to ascertain. Details were obtained from siblings and stress, worry and anxiety was often linked to school, friendships, family issues and, for two of the siblings, factors related to their disabled brothers’ additional health needs.