Twenty-three parents and one 16-year-old patient consented. Assent was taken from 5 patients who contributed to the interviews with their parents. Two were aged 11 years, two 14 years and one 15 years.
In total 166 prescribed medications were taken by patients at home (Table 1). The number of medications prescribed for each patient ranged from 3 to 15 (mean 7, mode 5).
Participants described many experiences of how taking medication impacted on their lives. These have been summarised into common themes. Participants identified additional experiences that were not part of the original interview framework. These included: the rigidity that parents demonstrated around dose times, managing dose changes in school, the internet as an information resource and for liaising with other parents and the influence of medication labelling.
The timing of doses
Participants experienced challenges around the timing/frequency of doses. A four-times-daily regimen was the most difficult to adhere to due to the time available within daily activities. Participants described extending the duration of their day, arranging doses around meals/other medication and maintaining a precise time gap between doses.
We have to keep the gaps in-between equal, night-time especially because she has to have one at midnight, one at 2am then she’s due one at 6am. I have to stay up late until 2 o’clock and then I sleep after I’ve given her medicine. [Father of Patient 20 prescribed oral omeprazole, erythromycin, dexamethasone, glycopyrronium and co-trimoxazole.]
To make the medication regimen fit around daily life participants adjusted the timing of medication or daily activities. Establishing a routine was identified as important. Few participants sought advice about their medication schedule from a healthcare professional. Others sought advice on changing the timing of medication. This included adjusting the times away from the hospital administration times. Two participants had changed the regimen themselves.
Medication at school
Participants described their experiences of medication at school. Whilst some had positive experiences others avoided the need to administer at school. Difficulties included educating teachers, administration in front of peers, transporting medication, limitations on frequency of administration and arranging additional medication for storage at school. School staff were unable to administer updated doses of medication following a verbal instruction of a dose change when medication was labelled with the previous dose.
If she’s gone to an out-patient appointment and her doses have changed she’ll have an old packet that hasn’t been labelled properly. Then I’m saying to [the school] the doses have changed. The school say ‘well we can’t give it because the dose that we’ve got is incorrect’. Then I’m waiting a week for the prescription to come or potentially two weeks for a letter from the hospital to get to the GP and then the GP to write out a new dose of medication. Quite often I’ll have to keep her off school because they can’t give the new dose. [Mother of Patient 21 prescribed oral desmopressin, levothyroxine, hydrocortisone and subcutaneous somatropin.]
Many participants cited remembering to give their child’s medication as their biggest challenge. Strategies employed to reduce the risk of unintended non-adherence included a mobile phone alarm, placing medication where it was visible, home-made chart/administration record and verbal reminders. A number of participants had purchased medication compliance aids. A second checking process had been adopted by one participant to reduce the risk of error.
I’ve had to put a list, like a checklist, on my fridge to make sure that I know I gave it him as well. I didn’t before and I used to feel like I was forgetting so I wrote it down so I know I gave it him. [Mother of Patient 14 prescribed oral multivitamins, vitamin E, ranitidine, pancreatin, nebulised sodium chloride, salbutamol and colistimethate.]
My husband and I always check them together to make it easier. In the past my mum did because she was a nurse and she taught me to double check which is brilliant because there have been times when I’ve been tired… [Mother of Patient 9 prescribed via gastrostomy senna, Movicol®, paracetamol, carbamazepine, levetiracetam, omeprazole, buccal midazolam, inhaled oxygen, rectal phosphate and sodium citrate.]
Participants found the information provided with their medication useful. Some described their experiences of receiving information about dose changes in clinic. This was provided verbally, with insufficient time for participants to write down, or with a hand-written note that was difficult to read.
That’s how we had to learn how to increase the dose. It was just a little scribble on a piece of paper from the consultant at first and the actual letter comes about three weeks later. I hope that when it finally comes through I’ve read this squiggle correctly and remembered what he said in clinic. [Mother of Patient 24 prescribed oral sodium valproate, carbamazepine and inhaled salbutamol.]
Few participants felt that they had received inadequate or conflicting information. Others believed that they were not told enough about access to medication outside of the hospital, how to use their medication, adverse effects or the type of medication prescribed.
We have some people telling us it’s really bad for him to be on [steroids]. When he’s older he’s going to suffer with his bones. When we went to the ‘out-of-hours’ at [the local hospital] it was one of the doctors there. So, we listen to him and then we’re told we need [the steroids by the respiratory team] so I’m like what do I do? [Mother of Patient 17 prescribed oral theophylline and montelukast. Inhaled salbutamol and Seretide®. Intranasal fluticasone.]
Participants commonly researched further information about their medication using the internet. This was for general interest, assurance, alternative treatment options, how to use their medication and information on adverse effects. Other participants avoided using the internet through fear of finding out something of concern.
At the end of the day we are responsible for [Patient 1]. I have researched them, I don’t understand half of it, but I’ve got an understanding to maybe ask the right questions and just check because we are responsible for him and we’ve not had anyone who’s on regular medicines in the family. [Mother of Patient 1 prescribed oral Movicol®, cetirizine, theophylline, hydrocortisone. Inhaled salbutamol and Seretide®. Intranasal fluticasone.]
Participants recounted experiences of using on-line support groups. Whilst helpful for some they created uncertainty for others through reading other patients’ experiences and advice from ‘expert parents’. One parent utilised a Facebook page for epilepsy and found that the reassurance provided reduced the need to contact the medical team.
I’ve joined a parenting group and I thought it would be nice to talk to other parents in the same position. They were saying things like if you give too much Creon then it will do this, you need to provide this sort of thing. I ignored it in the end and thought it’s probably best not to listen to you. Listen to the professionals. [Mother of Patient 14 prescribed oral multivitamins, vitamin E, ranitidine and pancreatin, nebulised sodium chloride, salbutamol and colistimethate.]
Different heart mum’s groups. They’ll say they were on captopril but now they’re on something and I’m like, well, what’s that then? Is it like captopril? Why is your daughter now taken off captopril and put on to this one and I’m thinking can’t [Patient 15] be taken off captopril and put on this one? [Mother of Patient 15 prescribed oral captopril and inhaled salbutamol (previously digoxin).]
I joined a parents’ for epilepsy Facebook. Sometimes you just think the doctor only has so much time with you and they have so much information that they can give you. It can be quite lonely out there when you don’t know what you’re doing. Reading about her hair falling out and the other mums and dads are saying it’s fine…it will grow back it’s not forever, she’s not going to end up completely bald. It can be reassuring. [Mother of Patient 24 prescribed oral sodium valproate, carbamazepine and inhaled salbutamol.]
Medication formulation and packaging
Child resistance due to taste, colour, tablet size, refusal and disliking inhaler devices were cited. The ease of tablets compared with liquid formulations was mentioned.
It takes a lot more time to deal with liquids because you have to keep drawing them up. If I’m late for school, I can just grab a tablet and quickly take it. But when it comes to liquid I had to stay over a bit longer and draw it up. It’s more convenient with it being tablets. [Patient 2 prescribed oral phenoxymethylpenicillin, folic acid, paracetamol, ibuprofen and morphine sulphate.]
Parents used a variety of methods to aid their child’s medication taking. These included: distraction, tasting medication to empathise with their child, taste masking and changing the formulation.
Some participants had experienced difficulties with medication packaging and expressed concern about waste when receiving large bottles. Labelling caused some anxiety. A ‘cytotoxic’ label caused one participant to decide against taking their medication. An ‘unlicensed medication’ label on a bottle of phenobarbital caused concern.
I think the other thing was his phenobarbital coming with a great big label on saying ‘unlicensed medicine’. My mum saw it and she was like ‘oh my gosh! what are they doing?’. [Mother of Patient 11 prescribed oral phenytoin, vigabatrin, levetiracetam and ranitidine (previously phenobarbital).]
Few participants described challenges if the manufacturer of their medication changed. Others described uncertainty about whether they were receiving the correct medication, difficulty remembering the name, intolerance of alternative brands and the inconvenience of requiring refrigerated storage depending on the brand dispensed.
We have to try and keep to the same brand but we’ve found a lot of community pharmacists give us a different brand. Now the GP puts it on the prescription. Epilim liquid and syrup get interchanged. The syrup isn’t good for her teeth, it’s quite sugary and quite thick to [administer] to her. We do find one week we’ll get liquid and another we’ll get syrup. [Mother of Patient 24 prescribed oral sodium valproate, carbamazepine and inhaled salbutamol.]
Travelling with medication
Administering medication was considered awkward in the presence of other people.
We’re in a café and we’re drawing up meds and everyone’s looking at you thinking ‘what are they doing!’. Especially when you’re out and about that’s the worst. [Mother of Patient 15 prescribed oral captopril and inhaled salbutamol (previously digoxin).]
Transportation was described as a problem for daily travel and holidaying. Particular problems were with refrigerated medication and large bottles. Some participants had purchased oral syringes with caps to carry doses. One participant risked the period of time that their refrigerated medication was transported at room temperature. Other participants used medication compliance aids for holidays and described using ice blocks to keep medication cool. Some participants avoided going on holiday due to the perceived difficulties over transporting and accessing medication.
Holidays is a hard one. When we got there we had a cold bag with ice packs in it and obviously the ice packs were melting and we had to stop and get ice from different shops. We had to stop at three different stops to get ice to cool his medicines down which was really hard. It was so hot the ice was melting and then when I got there the labels had come off! [Mother of Patient 18 prescribed oral sirolimus, mycophenolate, sodium bicarbonate, d-mannose and sodium feredetate.]
Managing supplies of medication
Participants who received their medication through the hospital described the ease of receiving a prescription in an out-patient clinic and their medication from the hospital pharmacy. Those receiving medication through their GP highlighted community pharmacy prescription collection services and on-line ordering as useful. However, a number of participants described some difficulties obtaining medication in primary care. These were: the GP declining to prescribe, unavailability in community pharmacy, difficulties with the repeat prescription process and delayed communication between hospital and GP. Participants described the advanced planning that they undertook to maintain medication supplies.
Initially yes, it was a very big problem. Trying to get the GP to prescribe something that’s not listed in his bog standard BNF was a big issue. He refused to prescribe anything so now I literally don’t go to the GP. [Mother of Patient 18 prescribed oral sirolimus, mycophenolate, sodium bicarbonate, d-mannose and sodium feredetate.]
There’s certain meds the GP won’t prescribe. They’re like, ‘well, hang on they shouldn’t be on that med anyway’. That’s the way they see it. Even the digoxin, when we brought the forms to the GP after he got discharged he was looking at it and like ‘Really! Is he on that!? Are you sure!?’. [Mother of Patient 15 prescribed oral captopril and inhaled salbutamol (previously digoxin).]
The time taken to arrange supplies of medication focussed around two themes - ordering frequency and the time it took for the prescription and supply. In particular, having to frequently arrange supplies of medication due to a lack of synchronisation. This required ordering at least one medication weekly.
The phenobarbital in particular. We were told that we could order it and obtain it within 48 h. But subsequently actually we need 10 days. We’ve never run out but there was once in particular it was really challenging. [Mother of Patient 11 prescribed oral phenytoin, vigabatrin, levetiracetam and ranitidine (previously phenobarbital).]
Half of participants had experienced adverse effects ranging from diarrhoea to thrombocytopenia. Most had been informed by the healthcare team, other parents or through self-research. Most participants sought advice from nurses within their specialty. Mild side effects were managed by participants.