Process of data collection

For each participant with aphasia the aim was to collect observational data in a maximum of six healthcare intervention contexts, approximately equivalent to three therapy sessions at or near the beginning of the rehabilitation block, and three at or near the end. The number of sessions observed for each participant varied according to when they were discharged (e.g. earlier than expected); the type or nature of sessions and whether they were appropriate for the researcher to attend (e.g. washing and dressing or mood screening); ‘timetable’ clashes (e.g. between two participant sessions); or HCP and PWA illness on a scheduled observation session. The researcher aimed to observe the PWA with the greatest possible variation of HCPs. The researcher choose which sessions to observe based on the purposive sampling frame (Patton, 2002), which encompassed a range of dimensions directly relevant to the research questions: 1) observable routine rehabilitation activities (i.e. face-to-face therapies and therapist- or nurse-patient planning or goal- setting discussions); 2) healthcare staff intervention types (e.g. physiotherapy [PT], occupational therapy [OT], speech and language therapy [SLT]); and 3) healthcare staff (therapists, rehabilitation assistants, assistant practitioners, nurses). This was subject to HCP involvement for individual participants with aphasia – for example, some participants did not have OT involvement and some did not have PT involvement.

The data collection process was facilitated by a single point of contact in the ESD team (the ESD administrative assistant), from whom ESD timetables were obtained for each of the three teams. MDT meetings were held every Tuesday and Wednesday, where new referrals and discharge planning were discussed. The timetables were drawn up by the administrative assistant on Thursday and Friday each week. When a new referral was made to the ESD team the person would begin involvement with the team the following week. If the person was deemed to no longer need or want intensive rehabilitation, they were discharged from the service or their sessions would begin to be reduced towards a discharge date. The researcher contacted the ESD single point of contact once a week after the multidisciplinary meetings to be updated on the PWA’s expected discharge date. According to this date the researcher would choose when to complete the second set of videos and carry out the same data collection process as she did for the first set of videos. A sample of the data collection process is shown in Table 11. This sample is based on a six- week block of intervention, which is the average intervention period for a PWA in the ESD service. The timings may vary where the person was engaged in a shorter or longer

intervention block. Once the last video-observation was completed with a participant with aphasia, the researcher arranged a time to complete the one-to-one topic guided interview.

Table 11. Data collection process for PWA with indicative examples

Rehabilitation block in weeks Example of data collection

Week 0–1 Speech and language therapists invite patients who meet the inclusion/exclusion criteria to consider taking part

Person expresses interest in participating in the study. SLT asks the potential participant how they would like to be contacted by PI. A permission to contact form is filled in accordingly Researcher collects the permission to contact form from the gatekeepers

Week 1–2 Researcher contacts the potential participant through their preferred medium and arranges a meeting to discuss the information sheets and sign consent forms

Meeting held and consent obtained in up to 24 hours Single point of contact in the ESD team contacted and timetable obtained. Time arranged for first video recording. Permission sought from all participants to observe particular sessions

Week 1–3 Three therapy sessions observed and video-recorded (onset of rehabilitation block)

Week 4–6 Three therapy sessions observed and video-recorded (pre- discharge from the ESD team)

Week 7 One-to-one semi-structured interviews with the person with aphasia (at discharge) and a sample of the ESD staff (when all video observations are completed)

Debriefing with the person with aphasia if requested/needed

4.7.1 Process of data collection for individual participants: video observations

When a PWA was recruited to the study, the researcher would make a phone call to the ESD administrative assistant to obtain information on: the ESD team members working with him/her; and their timetable for the following week. The researcher then contacted the HCPs involved to ensure that they were happy for the researcher to observe the proposed sessions. If the HCPs were happy to have the proposed sessions observed, the researcher then contacted the PWA and advised them on the days that she would be attending the

session and making a video recording. The researcher, recognising that consent is fluid (Mental Capacity Act: Department of Health, 2005), always sought consent from all participants at the beginning of the session before the video recording began.

4.7.2 Details of video observations

Fourty-two routine rehabilitation sessions were observed and video-recorded by the researcher (CS), including 33.5 hours of data (ranging per participant between 56 and 314 minutes). The observations included a range of HCPs including: OT; PT; RA; AP and nursing staff. Further details are outlined below in Table 12.

Table 12. Sessions observed for each participant

Study identifier: PWA Total number of sessions observed Total duration of observations (minutes) Number of observations set 1 (HCP) Number of observations set 2 (HCP)

1 4 173 3 (RA, PT, OT) 1 (AP)

2 2 56 1 (RA) 1 (RA)

3 6 279 3 (AP, RA, RA) 3 (RA, RA, AP)

4 4 196 2 (RA, AP) 2 (AP, RA)

5 5 254 3 (RA, AP, OT) 2 (AP, AP)

6 5 247 3 (OT, AP, RA) 2 (AP, nurse)

7 2 113 2 (RA, RA) No Longer

Eligible (NLE)*

8 2 105 1 (AP) 1 (AP)

9 6 314 3 (AP,PT, RA) 3 (PT, RA, AP)

10 6 282 3 (AP, RA, PT) 3 (OT, AP, PT)

*NLE = no longer eligible to participate in study due to ill-health 4.7.3 Interviews with people with aphasia

One-to-one semi-structured interviews were carried out with each participant with aphasia after the final set of video data had been collected. These interviews were conducted in the PWA’s own home by the researcher (CS) and guided by a topic-guide (Appendix XIV). In addition, the researcher followed up on topics initiated by the person with aphasia.

Interviews were video-recorded, lasted between 15 and 70 minutes. Adjustments were made to the interview process as appropriate for the needs of PWA with limited communication, as used by Luck and Rose (2007). Additional time or individualised resources, such as use of pen and paper; Visual Analogue Scales (VAS) and Likert scales were used to support the person with aphasia’s communication and participation in the interview, to allow the PWA to make a full contribution. For all interviews, the researcher paraphrased the PWA’s answers to ensure she had interpreted them correctly and paid close attention to non-verbal communication, being careful to respond to all non-verbal initiations. As discussed above, the researcher offered to show the PWA vignettes from the video observations. The researcher also discussed video observation as a methodology with the participants. Individual participants’ interview details are set out in Table 13.

Table 13. Details of interviews with participants with aphasia

Study identifier Aphasia severity (as established by SLT)

Duration of interview (minutes)

Adjustments made Vignettes used

(yes/no)

1 Severe 32 Pen and paper, closed

questions

Yes

2 Mild 15 None No

3 Severe 57 Pen and paper, Likert

scales, VAS, closed questions

Yes

4 Moderate 48 None No

5 Mild 71 Paper and pen No

6 Moderate 19 None No

7 Severe NLE* N/A N/A

8 Mild 42 None No

9 Severe 35 Closed questions No

10 Mild 44 None Yes

4.7.4 Interviews with healthcare professionals

From the cohort of HCPs recruited to the study, eight HCPs were interviewed using a semi- structured topic guide (Appendix XV). The eight HCPs were: still working on the ESD team; had been observed conducting routine rehabilitation; and consented to be interviewed. The interviews with HCPs were conducted after the final set of video data had been collected. Interviews lasted between 30 and 60 minutes and were conducted in the ESD rehabilitation office, in the rehabilitation hospital, at the staff’s convenience. Individual HCP participants’ interview details are set out in Table 14.

Table 14. Details of interviews with healthcare professionals

Study identifier Profession Duration Vignettes used

(Yes/No) 6 RA 33 minutes No 10 OT 35 minutes No 12 AP 60 minutes Yes 13 RA 50 minutes No 15 AP 37 minutes No 17 AP 46 minutes No 20 PT 42 minutes No 21 Nurse 44 minutes No