Other participants: 6
Several participants felt that children with CF may encounter particular difficulties with falling behind in their school work and catching up on any work they may miss. Two young people involved in the study specifically discussed experiencing such difficulties:
‘Sometimes, I get behind’.
(Luke:
♂
, A16, Y11, S,✙
IVs, IVs)‘There were a few times where I’d miss, say, a load of key stuff…I suppose like getting behind, because I remember like when I went into hospital in year ten, it was in June when I was doing my GCSEs and I missed a load. So that can affect people, that affected a load of my work’.
(Bob:
♂
, A17, Y12, C,✙
IVs, IVs)Participants suggested different reasons why children might fall behind at school. Both the CF nurse specialists connected the issue of falling behind and catching up to children being ill and unable to attend school, therefore illustrating a relationship to the theme ‘school absence’:
‘I think if everything is going fine and the kids are well, then I think it’s not a problem. But I think when the kids are unwell and they miss school, it can be difficult because they’re getting behind with their course work or with their lessons’.
One parent felt that her son had less time available to complete homework due to his CF treatment requirements and consequently this meant that keeping up with his school work was difficult. This suggests that some children with CF may be disadvantaged by time as they attempt to balance the demands of school work with their CF treatment commitments:
‘I think probably keeping up with his work is quite hard because they get 9 hours of homework a fortnight. Which I think is quite a lot. And I think if you’ve got other things as well like Joe obviously, doing his
nebulisers, because you think, when he comes home from school normally, he might just have his Pulmozyme to do, but then if he’s on any extra treatment, like he’ll have two nebulisers, he’ll have his
medicines, his physio or his pep mask or whatever activity we do for his physio and then meal times. When you’ve got to start sitting down and doing homework, I think sometimes probably he does find it, particularly for big projects to do and it’s a set time, probably he does find that hard to keep up with’.
(Louise, parent of Joe:
♂
, A11, Y7, S,✙
IVs,
IVs)Some participants felt that the period during which children return to school after being ill can present a risk of falling further behind. The hospital school HLTA suggested that children could fall further behind if they do not understand what is being taught on returning to school and may become disengaged with learning:
‘So we have one lad, and as I say he’s not very low ability. But he’d miss great chunks and he’d go back in and not understand what’s going on and would then mess about to cover up the fact that he didn’t know what’s going on and then get sent home because he was misbehaving. It’s just a vicious circle…’.
(Yvonne, hospital school HLTA)
One parent of a young person who had received regular treatment in hospital explained that he could not get the help he needed to catch up on the work missed when returning to school. Consequently, he was unable to continue studying one school subject at GCSE level due to falling too far behind. Her account suggests that attempting to catch up after a return to school could be problematic. This illustrates the importance of children continuing their school work while in hospital, and therefore connects this theme to ‘continuity of education’:
‘He wanted to do an IT GCSE in computing and the teacher was concerned that he’d missed too much (work) and she said “I’d advise him not to take it as a GCSE”, and she kept going “because of your health, because you’re off all the time”…kept looking at him. She said “if you miss too much, I can’t come back and keep helping you catch
up”…If he’s in hospital for two weeks, he’s missing two weeks that she (the teacher) won’t ever go back over and the class will have moved on. Basically she’s saying it’s too hard for her to do that…’.
(Nikki, parent of Luke:
♂
, A16, Y11, S,✙
IVs, IVs)However, other children involved in the study explained that they received additional teaching in the lessons where there was a risk of them falling behind if they were unable to attend school:
‘Well, in maths we have this like group it’s called a booster group and I’m in that booster group’.
(Violet:
♀
, A9, Y5, P, IVs)‘They’re giving me some extra lessons in English and Maths. It’s given to people who struggle with them lessons. So lessons they do really well at they miss out on, and then they do the extra lessons to boost them in the lessons they don’t do so well on’.
(Joe:
♂
, A11, Y7, S,
IVs)Other participants felt that falling behind at school could be circumvented where children and young people are more academically able:
‘There’s a lad that’s just come in today and he’s a really bright button. He’s really focused and will work independently in his room, you know, a bright little thing. So if they’re a bright one missing a bit more school than everybody else, it might not make that much difference’.
(Diane, CF nurse specialist)
‘Well Rachel is bright. So yeah, she gets away with it (missing work)’. (Linda, parent of Rachel: ♀, A13, Y9, S(fp), IVs)
5.9.4 Symptoms and side effects
Sources: Children and young people: 2Other participants: 4
The symptoms of CF and the side effects of CF treatments were discussed by participants, along with the possible implications for children’s educational
example through coughing which could disrupt sleep during the night or through waking early for treatment:
‘Before he goes back (to school) I’ll email his form tutor and just ask to pass around that he’ll be getting up early for his treatment and he might be a tired’.
(Louise, parent of Joe:
♂
, A11, Y7, S,✙
IVs, IVs)One young person suggested that tiredness could affect his academic performance as the school day went on:
‘It does tire me out through the day so when I get to lesson 4, I’ll be really tired and I wouldn’t do as well as I would do in a morning. As I go throughout the day it gets harder and I just want to go home’.
(Joe: ♂, A11, Y7, S,
IVs)Another young person explained that his cough was sometimes troublesome during lessons and he would need to leave the classroom to get relief. This suggests that while children are able to attend school, there remains the possibility of them missing parts of their lessons due to the symptoms of CF. Therefore, this theme has a relationship to ‘falling behind and catching up’:
‘There were times when I would have to leave classrooms because I was coughing. But normally I’m not a big cougher, only when I’ve got something, if I’ve got a bug like Aspergillus or Pseudomonas. There has been a few times when I’ve had to leave the class to get some water and just have a drink’.
(Bob:
♂
, A17, Y12, C,✙
IVs, IVs)Participants discussed the issue of lateness as a result of children experiencing certain CF symptoms. One parent said that her son regularly experienced pain each morning due to CF related digestive issues. Consequently, these symptoms were sometimes making him late for school:
‘…Belly ache he gets mostly, but come lunch time he’s absolutely fine. But we can’t get to the bottom of why he’s got belly ache. It’s every morning then it’s relieved by going (to the toilet), but a few times, and that in itself is making him late for school’.
Two education professionals specifically mentioned observing mood changes in children while they were having IV antibiotic treatment. They felt that this IV treatment side effect could be distinguished from other adolescent emotional changes:
‘There’s a girl that was in last week, and she mentioned experiencing mood swings. I mean like OK yeah, she’s 14. They all have mood swings at that age. But I thought that, I’ve never really talked to her about this…She’d never really said all of that and I think it’s quite interesting’.
(Yvonne, hospital school HLTA)
One teacher explained that her student’s change in mood had affected the relationships she had with her peers:
‘When she’s on IVs, we have noticed she does become more moody and more emotional and it happened last year when she was in year four and I think it’s happening now. There’s more tendency to fall out with people. She was more unhappy, she fell out with more children and you know got angry with lots of people. And I did speak to her mum and whether it was to do with her medication’.
(Jayne, teacher of Violet: