Chapter 5 Phase two: Interview findings
5.10 Conceptual category 6: Educational support
This conceptual category details participant accounts that concern educational support for children with CF. Three themes are contained within this conceptual category; continuity of education, extensions and extra time, and significant school subjects.
5.10.1 Extensions and extra time
Sources: Children and young people: 1Other participants: 2
Participants referred to the provision of extensions and extra time for school activities as a helpful and supportive school response to some of the challenges faced by children with CF. Again, the following two perspectives demonstrate that some children may experience disadvantage at school due to the significant amount of time taken up by managing symptoms and treatments that might otherwise be spent on school activities. Therefore, the provision of extensions and/or extra time may serve to reduce this disadvantage:
‘I mean I’ve also actually asked for things like extra time at exams and extensions for coursework if they’ve got a lot on and they’re not very well and you know if they’re not reaching what they should do purely because of their health’.
(Joanne, CF nurse specialist)
‘But they have been really good, I mean like his Geography teacher, he had a project to do, and when he was on his Cipro last time before he went into hospital and he was really tired and it was a lot of work, and I just asked her if we could extend it and she let us. They’ve said he can have extra time with homework if he’s needed it’.
(Louise, parent of Joe: ♂, A11, Y7, S, ✙IVs, IVs)
Two participants specifically discussed GCSE examinations as a particular school activity where extra time may be of support to young people. One young person mentioned that while he received extra time during his GCSEs, he questioned his entitlement to such educational support. This suggests that some children with CF may not view the condition as a reason to receive educational support, perhaps through their concern with ‘being like everybody else and rejecting the idea of being different to their non-CF peers. Therefore, this demonstrates a relationship between the two themes:
‘I did get the extra time for my exams. I did get that as well for college. So I played (on) it (CF) a little bit there’.
(Bob: ♂, A17, Y12, C, ✙IVs, IVs)
5.10.2 Significant school subjects and activities
Sources: Children and young people: 5Other participants: 4
Participants frequently discussed specific school subjects and activities, suggesting these may be significant for the provision of educational support for children with CF. Two school subjects were discussed in particular. These were PE and science. Two parents talked about the importance of their child’s participation in sports, yet raised concerns that schools may have different expectations of children with CF and their physical capabilities. Again, the following perspectives also suggest that parents would like their children to participate in school activities in the same way as their peers, therefore connecting this theme ‘being like everybody else’:
‘They had this cross-country thing and she came 4th and I said “what did the teacher say” and she said “oh wow Violet, we didn’t expect that from you”. So the sports side of it, I want her to do all the sports I want, I don’t want her molly coddled, I don’t want them to be thinking “oh she can’t really do that”…’.
(Alice, parent of Violet:
♀
, A9, Y5, P, IVs)‘And I think PE, they probably tend to treat him a little bit different. Richard (parent) has emailed the PE teacher because we just wanted to make sure that they don’t really cut him much slack. We don’t want him just going and not doing PE. We want him to contribute you know and he wants to join the Rugby team and everything. And I’d really like them not to make a difference for him for PE. Because at the moment he can keep up with everybody…Because I think at primary school he were a bit, they used to walk to church on a Friday and they used to say “oh we’ll take Joe in the car”. No he shouldn’t go in the car, he can walk. We want him to take full part in PE and everything’.
(Louise, parent of Joe:
♂
, A11, Y7, S,✙
IVs, IVs)While some parents have concerns about their children being treated differently while doing PE at school, one teacher’s account suggests that CF is not always seen as a barrier to children’s participation in sports. The teacher discussed actively encouraging her student’s participation in PE and considered her to have a
particular talent in this area:
‘She achieves so much in PE. She’s also very talented at it as well and she’s a national windsurfer. She was in the national championships and came third, she skis, she mountain bikes and she’ll be doing GCSE PE next year. She’s in my sports teams at school so she plays, represents for the school and she’s captain of the rounders team’.
(Jackie, teacher of Rachel:
♀,
A13, Y9, S(fp), IVs)Indeed, children and young people involved in the study described being very active, which is also an important part of CF treatment routines. When children were asked about their hobbies during the interviews, they all reported taking part in many sporting activities:
‘Well, I’m just getting ready to go windsurfing’. (Rachel:
♀
, A13, Y9, S(fp), IVs)‘I’m doing the village 10k with my dad. So, I run and I just started the gym’.
(Bob:
♂
, A17, Y12, C,✙
IVs, IVs)‘Yeah I do quite a bit of running and a bit of boxing’. (Joe:
♂
, A11, Y7, S,
IVs)‘I do sports’.
(Violet:
♀
, A9, Y5, P, IVs) ‘I do weightlifting at the gym’.(Luke:
♂
, A16, Y11, S,✙
IVs, IVs)However, aside from the physical capabilities of children with CF, one young person explained that he would frequently miss PE for an entirely separate reason,
suggesting there may be other barriers to participating in this school subject. He explained that worries about his stature prevented him from getting changed in front of others. Therefore, his account demonstrates a relationship to the theme of ‘body image’:
‘I always felt kind of a little bit inadequate for PE even though I wasn’t. Like I’d say now, I’m probably fitter than most of the people I went to school with. But I didn’t like to get changed in front of all the guys because I always felt like I was too thin. I used to get a few comments once in a while about my stature. So I used to always feel like I didn’t want to do it. So sometimes I would just skive P.E. pretty much’. (Bob:
♂
, A17, Y12, C,✙
IVs, IVs)Parents and children also specifically referred to IV treatment being a barrier to taking part in certain sporting activities. They raised concerns about the possibility of IV access lines becoming damaged during PE. Three children and young people expressed their disappointment at not being able to take part in sports they enjoy while having IVs:
‘Well, because my arm is wrapped up in a bandage and because I really like gymnastics, I can’t really do that so I have to like chat or do
something else that doesn’t involve hurting my arm’. (Violet: ♀, A9, Y5, P, IVs)
In addition to PE, two participants also discussed school science as a significant school subject for the educational experiences of children with CF. CF often features within the secondary science curriculum to exemplify the inheritance patterns of genetic diseases. However, one of the CF nurse specialists felt that the curriculum could portray an inaccurate picture of life with the condition, which might be upsetting to children with CF:
‘I think there’s an issue with regard to things like biology when it’s taught at GCSE level and then at A’level because CF is mentioned and it can be quite out dated and upsetting and what have you. It’s really outdated and I know they can’t change the curriculum. My daughter did A’level biology and she couldn’t believe what was being told compared to what I used to say to her about it’.
(Joanne, CF nurse specialist)
One young person felt that his science teacher avoided teaching a lesson in the usual way when it involved CF. Taking the previous account into consideration, it is possible that some teachers may have concerns about upsetting children with CF when teaching this aspect of the curriculum. However, changing the content of the lesson may also have the consequence of making young people feel different, again demonstrating a relationship to the theme ‘being like everybody else’. The young person appeared frustrated when recalling the lesson about CF:
‘In science, the biology teacher took me out and said they were teaching about CF in the lesson. But because I have CF they only did ten minutes on it and I know that there are five different classes where they did a one-hour lesson on it. They cut it short in mine. I don’t know why, I’m not even bothered’.
(Luke: ♂, A16, Y11, S, ✙IVs, IVs)