Participant data

A total of 20 interviews were carried out:

 13 males and 7 females

 11 participants were recruited from the adult CF clinic (seven males, four females)

 9 participants were recruited from the paediatric CF clinic (six males, three females)

 Three participants were inpatients (two from the paediatric register, one from the adult register)

 The mean age of the 20 participants was 16.65 years, ranging from 11 to 20 years old.

Table 5.4 Participant Data

In total 51 adolescents were approached for recruitment in the study. Ten adolescents declined to participate citing the following reasons to the CF staff:

not enough time (3 participants), nothing to say (2), doesn’t want to participate (2), family problems (1), stressed out and doesn’t want to see anyone (2).

Despite these initial refusals, two adolescents offered to participate either

167 during their next clinic appointment or during an inpatient stay, however due to time limits on the study their involvement was not possible.

Figure 5.8 Recruitment responses

Some participants who had been notified of the study via the clinic postal correspondence did not attend their appointments. Thirteen potential participants did not attend clinic appointments during the study, whilst a further two were delayed. The clinical team reported that a further three inpatients were willing to participate, however, two were sent home early and one was unable to attend as the hospital could not provide a bed.

It was evident from the interviews that the adolescents are rarely asked to participate in medical device research or for their views on device design - it is interesting to reflect here on the reasons for participation. Some patients took part in an interview to pass time in the clinic between consultations

“I was just killing a bit of time and just interested really” (P1),

whilst others expressed that they were keen to find out about the study and to be aware of research involving CF based topics

“I think knowing about all the different types of things going on is good, it makes you more aware” (P16)

“because I use it on a regular basis and I was interested to see where projects are going” (P2).

168 It also appears that some of the adolescents were motivated to participate because it offered them an opportunity to provide their views about the acapella®

“I think it’s important to get personal feedback from people who actually use it” (P3),

“we’re not normally asked. That’s why I might as well do these things when I get asked” (P12).

Figure 5.9 displays the age distribution of the 20 participants who were interviewed. The distribution is split between the two CF registers, adult and paediatric to represent the two pools of recruitment.

Figure 5.9 Participant age distribution

The participant numbers are relatively balanced between the clinics (11/9), the split in the bar chart corresponds to age of 16 when they can provide informed consent. Two 16 years olds were recruited from the paediatric clinic prior to their transition to the adult register and subsequently were able to provide their own consent rather than just assent.

Figure 5.10 details the additional persons who were sometimes present for the interviews. Four participants were not accompanied for their interview, all recruited through the adult CF register, whilst two participants were accompanied to the appointment but the accompanying person did not stay for the full duration of the interview.

169 Figure 5.10 Number of participants accompanied to clinic

All paediatric participants under 16 years of age were accompanied to the appointments and interviews.

Two of the older female participants were accompanied by boyfriends rather than family members. This is an aspect of the transition phase, where patients introduce new people into their care team, such as friends, boyfriends and girlfriends or other adults such as leaders from social groups.

With regard to duration of the interviews,

 The interviews ranged from 9min 37sec to 37min.

 Mean interview time was 20.46min

 The gender split for mean interview duration was similar: 20min 32sec for males and 20min 54sec for females.

 The mean duration of interviews for participants from the adult register was 21min, compared with 20min for paediatrics.

Although no differences were observed between groups, the lengths of the interviews were variable depending on each individual case. Not only did they depend upon the required clinical procedures, but also the participants’ time commitments outside of the hospital.

Three of the participants (P4, P5, and P20) declined to be recorded during their interview preferring the interviewer to take notes, several reasons were

170 given for this request. Firstly, it was reported that the audio recorder would make them more nervous. Secondly that they didn’t like the sound of their own voice and so wouldn’t like it to be recorded and listened to. Finally, one participant, was coughing fairly regularly during the interview, indicated that due to their coughing an audio recording would be “off-putting”.

Figure 5.11 shows the duration of acapella® use in their CF management, and also how many participants had abandoned the device in favour of other methods.

Figure 5.11 How long participants had been using the acapella®

Two participants stated that they now only use the acapella® occasionally and when the device suits them i.e. after operations. These individuals reported that they used the acapella® in conjunction with other physiotherapy devices and therefore did not solely rely on it. Six participants had previously been given an acapella® but were not satisfied with the device or with the physiotherapy it administered and no longer used it. Reasons for this are covered in the analysis of the interview data. For those who had given up using the acapella® a range of physiotherapy alternatives were listed: the Spirometer (2 participants) and PEP Mask (3), manual physiotherapy achieved through autogenic drainage (1) or exercise (2).

Within the population sample were two new users of the acapella®, both of whom were inpatients and had been given the device during their stay.

171 Sometimes the accompanying person provided help to the participant reminding them how long they had been using the acapella®. Only one adolescent was unsure about the duration of use about the acapella® stating he couldn’t remember (P4).

All of the participants had experience with using other physiotherapy devices and other chest and airway clearance techniques.

Figure 5.12 What other devices have been used by the participants?

It is evident within this sample of adolescent users of CF physiotherapy products the PEP mask is the most common alternative to the acapella®. The Cornet® and Flutter® devices had only been used by one patient (P3, P5) and according to the physiotherapists were now not commonly offered within the clinics as adherence of use of these devices was historically poor. The CF physiotherapists stated that their preference was for the patients to use the acapella® or the PEP Mask as these tended to result in better user acceptance. Possible reasons included that neither is gravity dependant, which is a drawback of the Flutter®, and that they do not make a loud antisocial noise as is the case with the RC-Cornet®.

Although participants were specifically asked about devices they had experienced it is notable that three of the participants (P17, P19, and P20), all aged 19 and 20, had made the decision to stop using a handheld device for physiotherapy and stated this within the interview. Instead they had chosen

172 routines of exercise and autogenic drainage for their daily physiotherapy sessions. It was mentioned by those using exercise that if symptoms were bad then this technique of airway clearance would not always be suitable.