5. ANALISIS Y COMPORTAMIENTO DE LAS MEZCLAS
5.5. ENSAYO DE COHESIÓN, NORMA ISSA TB 139/ASTM D 3910
Children with CF must complete a vast amount of treatments every day in order to stay well. This conceptual category relates to how such medical treatments are balanced and managed alongside children’s school experiences and activities. The conceptual category includes two themes relating to ‘arranging CF treatments away from school’ and ‘fitting everything in’.
5.6.1 Arranging treatments away from School
Sources: Children and young people: 4Other participants: 6
Despite the large treatment regime that children with CF must adhere to, participants discussed actively arranging and completing such treatments away from the school environment wherever possible. For the vast majority of children with CF, the main regular treatment required at school is a pancreatic enzyme replacement therapy such as Creon, which is needed when eating. The CF
specialist nurses stated that school routines are specifically taken into consideration by the CF team when planning and prescribing the majority of day-to-day
maintenance treatments. Indeed, all parents and the majority of children explained that they would purposely arrange and complete CF treatments to fit around the
school day. This suggests a commitment from parents, children and the CF team to minimise any disruption arising from medical treatments to the education of children with CF:
‘Yeah I do everything in the morning when I’m at school, but on holiday I just do it any time’.
(Rachel: ♀, A13, Y9, S(fp), IVs)
‘He’s never needed anything at school apart from Creon. The hospital have never ever even implied that he needs anything between 9 and 3. It’s a doable time between 9 and 3 to not need anything’.
(Nikki, parent of Luke: ♂, A16, Y11, S, ✙IVs, IVs)
‘Well, we consider education to be really important so anything that needs to be done we tend to get done before and after school. I mean we try to get children on twice daily Flucloxacillin when they start school, so they don’t have to have them through the day at school…we advise things like if they’re on Dnase, that they do it when they get in from school; if they’re on twice daily Colomycin then to do it morning and evening’.
(Joanne, CF nurse specialist)
While maintenance treatment arrangements minimise disruption to education, when children required additional treatments, parents reported that balancing the
demands of this alongside school activities could be problematic. One parent explained that her son was unable to attend school during a course of IVs, as one dose was needed during school hours. She discussed concerns about whether there would be anyone at school with sufficient training or knowledge to handle the demands of administering this treatment. The parent cited this as a reason for arranging such treatments away from school:
‘I think the last time he had IVs he actually wanted to go to school but the thing is, he was on three times a day. I think if they were just twice a day we’d get him to school…I just know how I feel when I do them (IVs), I mean I was a nurse. I wouldn’t want to give that responsibility to anyone else…And then you’ve also got to think he’d have to take all his anaphylaxis stuff to school and would they be capable of doing that? I don’t know, I think it’s a big responsibility to give to somebody else. I think I would prefer to do them at home’.
Similarly, the hospital school HLTA also suggested there may be certain CF treatments that children are unable to do in the school environment:
‘I mean like this lad whose just come in today…I think well presumably he has certain pills that he has to take and I don’t know if he has his physio before or after school so he doesn’t have to do that in school. Fine. But there might be certain things he can’t do in school and things like that you know’.
(Yvonne, hospital school HLTA)
These perspectives raise issues around the resources needed to enable children and young people to have more complex CF treatments at school, which may offer one explanation as to why for most children with CF, the majority of treatments are arranged away from the school environment. The CF nurse specialists explained that they sometimes obtain funding to enable schools to administer physiotherapy. However, they stated that this is only needed by a small minority of children:
‘We try and help schools obtain some funding for physio, but it’s only a few children who have physio at school because there’s no other way if they’ve got overnight feeds. It’s like hectic for the family, they can’t get things done in a morning. Then we would introduce physio into school’. (Joanne, CF nurse specialist)
Gaining funding for the administration of IV antibiotics at school was not discussed. It is possible that funding for support with IVs is not considered necessary, as the CF nurse specialists explained that these can typically be administered to fit around the school day. Yet, contrary to this view, two parents in the study spoke about their children needing IV antibiotics during school hours. Only one of these children continued to attend school throughout their course of IVs. However, she attended a fee paying school, and her parent explained that it was able to employ a full-time nurse who could support the administration of IVs. Therefore this demonstrates a connection to the theme managing treatments at school:
‘They’ve been amazing really. The fact that they can do their IVs at lunchtime is worth its weight in gold…The nurse did all of the lunchtime doses for that fortnight that time. I went in the first time and sort of made sure she knew what to do…But usually we can manage them around school’.
The two parental accounts illustrate that school resources may be influential in the arrangement of CF treatments and may promote or hinder school attendance. This demonstrates a connection between this theme, ‘school absence’ and ‘managing treatments at school’.
5.6.2 Fitting everything in
Sources: Children and young people: 2 Other participants: 5
Participants discussed CF treatments and school activities in terms of fitting everything in to the day. One of the CF nurse specialists commented on this issue and recognised that fitting everything in can be a challenge for children and parents:
‘Before they come to school they’ve got all this treatment and when they get home from school they’ve got all this treatment to do and then at bedtime. In between that time, they’ve got to fit in a social life as well as doing all the homework’.
(Joanne, CF nurse specialist)
During the interviews, parents explained a typical school day for their children, and gave details about CF related treatments and activities that must be completed. While parents and children appeared to have effective routines in place in order to balance CF treatments alongside school activities, one parent’s account revealed the demands of this task:
‘Well he gets up in a morning, he’ll have his medicines, so he’ll have his Flucloxacillin or any others, like at the moment he’s on his
Ciprofloxacin…If his chest is good I won’t routinely do physio on him in a morning. He’ll just do the PEP mask and then he’ll have what
nebulisers he needs. Like at the moment he’s on Tobramycin, so he’ll have that and he’ll do his PEP mask before he does his Tobi and then he’ll have his breakfast and then he’ll toddle off to school. He has a packed lunch at school and then he’ll come home at tea time and we’ll have some more medicine and ‘cause he’s on his Fluclox three times a day he doesn’t want to have it at school, so we just do it when he gets home. And then again before he goes to bed and then he’ll do any homework, have his tea, have his Pulmozyme, and then usually he will do some activity when he gets home, whether it’s running around the block or some boxing with his dad or wrestling and he’ll do his PEP mask and then he’ll have his Tobramycin again before he goes to bed. And that’s really his day-to-day routine at school’.
Two parents demonstrated the resourcefulness of themselves and their children when fitting in CF treatments around the school day:
‘Like last night, she was doing her iNeb (nebuliser) whilst she was drying her hair’.
(Alice, parent of Violet:
♀
, A9, Y5, P, IVs)‘We do nebulisers in the car if she is on her own. Yeah we do a fair bit in the car’.
(Linda, parent of Rachel:
♀
, A13, Y9, S(fp), IVs)In many cases parents and children explained that they must get up much earlier in order to complete CF treatments in time for the school day. Some children and parents stated that they felt this to be difficult, particularly when children were in receipt of additional medications for chest exacerbations. One parent stated that her son was often late to school as a result of trying to fit in his IV treatment around the school day:
‘It’s more a time management thing, you know trying to get everything done, because he sets off to school at twenty past seven so it’s trying to… Because we do home IVs quite often so he can’t get to school on time for that otherwise we’d be getting up at like 5’oclock in the
morning’.
(Nikki, parent of Luke:
♂
, A16, Y11, S,✙
IVs, IVs) ‘It (IV treatment) takes up more time to do stuff’. (Rachel:♀
, A13, Y9, S(fp), IVs)‘It differs on a school day because my Cipro prevents me from having milk at different times. So if I want milk on a morning, because I get up at 7 for my breakfast, I have to wake up at 5 to have my medicine and then go back to sleep. And it’s been like that for about a month now’. (Joe:
♂
, A11, Y7, S,
IVs)Some parents discussed fitting everything in to the school day as a dilemma. Two parents felt that they needed to make a choice between their children doing CF treatments or attending school in the usual way. In both cases, parents gave precedence to their child’s participation at school, therefore illustrating the
strategies used to minimise any disruption to their children’s education. It appeared that parents were keen for their children to participate in school life in the same way as other children without CF:
‘But, they (the CF team) actually wanted him to have IVs in September because of his Pseudomonas and his coughing. He’d actually grown two different types of pseudomonas and we kinda like said, “oh he’s just started at a new high school”. So he actually didn’t go in for IVs, he just had the three months oral. And I do feel bad about that now because he did need them (IVs) at Christmas’.
(Louise, parent of Joe: ♂, A11, Y7, S, ✙IVs, IVs)
‘They would like him to do a nebuliser before school and we’ve kind of talked our way, that it isn’t feasible because of the time thing again. So, ideally he would do one before school then one mid afternoon, then one when he got home…but they want to make it achievable and not want him to start dropping out of doing things…’.
(Nikki, parent of Luke: