Designing the data collection session

In designing and conducting the study it was important to make as many

reasonable adjustments as possible for participant disability. A small proportion of PwPD were unable to communicate on the telephone. Anticipating this situation, I allowed a carer to discuss the study with me and make the appointment. When I arrived for the study appointment, I then had the opportunity to discuss the study again with both the patient and the carer in a more suitable environment and answer any questions.

Travel is a major barrier for many PwPD. Therefore, it was essential for me to design a portable data collection session that I could bring to people’s homes, in order to maximise recruitment. The technical challenges and my solutions regarding speech recordings are described in section 5.4. My budgetary calculations revealed that visiting the majority of people in their own home would allow the geographical boundaries to be extended from Norfolk to patients living in neighbouring counties but attending the NNUH. This is because I did not have to take into account potential long-distance taxi fares for participants from outlying areas to reach the university. Norfolk is a county in which a considerable proportion of older people live in outlying towns and villages with limited public transport connections to Norwich. PD is also associated with impaired driving (Meindorfner et al., 2005, Heikkilä et al., 1998).

In order to be maximally convenient to my participants, I also offered the option of coming to the UEA. Of my 45 participants, three selected this option. The majority of my participants said that they would not have taken part if a visit to UEA had been required. There were challenges in finding a suitable location for appointments at the university. The selected location should be quiet, confidential and have disabled parking facilities

nearby. I arranged to use a meeting room in the School of Nursing Sciences, which has a car park and a lift to all floors. Although this was the best location available at the time for the few appointments that took place on campus, it was not ideal. The building has few meeting rooms away from the main stairwell area. This means that they are not always ideally quiet for recording purposes. On one occasion, during university term, it was necessary to vary the order of tasks to find suitably quiet times to make recordings.

Only on one occasion did I experience significant difficulties with data collection in the field, when I had to exclude speech recordings from a participant who lived on a major road, due to the road noise interfering with the quality of the speech recording. In

comparison, during two of my three study sessions conducted at the university, it was necessary to alter the task order due to temporary noise issues. My experiences show that collecting data in participants’ homes where possible is far more convenient for participants in PD studies, leads to higher recruitment rates and does not have a

detrimental effect on data quality. Indeed, Ladefoged (1997) presents certain advantages of recording in the field. Recording considerations are discussed in section 5.3.

Fatigue is common in PD (Karlsen et al., 1999). Therefore, it was essential for me to design a data collection session which was both thorough and concise. It was

important to use brief assessments where possible (see section 4.6 for details).

Participants varied considerably in how long they took to complete the session, ranging from thirty minutes to an hour and a quarter, after consent had been obtained. However, the session was designed so as to be able to be completed by the vast majority of participants in under an hour after consent. If participants were experiencing fatigue, breaks were offered between tasks. I designed the study with the speech tasks first and alternating between the patient and the carer, in order to minimise the effect of fatigue on speech. However, on occasion it was necessary to vary the task order due to late arrival or unavoidable early departure of the CP or temporary noise problems which prevented speech recordings being made at that time.

A significant minority of PwPD experienced severe tremor-induced handwriting difficulties. Questionnaires were designed to be tick-box as much as possible. The demographic questionnaire required more writing, so was administered orally with the majority of PwPD. In cases when the participant was unable to complete tick-box questionnaires using handwriting, either the CP or I asked the questions orally and marked the responses on behalf of the PwPD. I had to take care to ensure that CPs only marked answers on behalf of people with Parkinson’s disease and did not generate answers on their behalf. A small number of PwPD had difficulty completing the consent forms, especially as they had to be completed in triplicate and required initials to be

written in the boxes rather than merely making a mark. All participants were able to sign their name with assistance.

Due to handwriting fatigue following a series of questionnaires, the majority of participants wanted to answer the post-CPIB feedback task in oral rather than written form. I checked with all participants that they were happy to continue. In cases where participants were too tired after the other assessments or did not wish to continue for any reason, I did not ask these questions. As a reasonable adjustment for participant disability, I therefore conducted the post-CPIB feedback task in oral form for participants who

requested this. I started by asking a prompt question about the acceptability of CPIB to participants. This was based on the intended written form question: ‘This scale has been developed in the USA. We would appreciate if you could tell us whether there were any difficulties with the language which affected understanding. If so which questions were particularly difficult to understand?’. Participants discussed their views on CPIB with me. Then some participants wanted to explore some of the wider issues of speech and communication in PD that were implied in the initial prompt question. The discussion was free-form and its direction determined by what participants wished to discuss. Although many participants explored aspects of speech and communication in general beyond the original prompt question, the discussion did follow from this prompt and I decided it would be unethical to cut participants off when they wanted to discuss these wider aspects with me. The scope and content of responses did not differ substantially between those provided in oral and written form.

In order to assess the test-retest reliability of the CPIB in my population (see sections 4.6.6 and 6.2), I re-administered this scale by post two weeks after the data collection session. I provided a stamped addressed envelope. I chose a follow-up period of two weeks because I believed it to be sufficiently long that participants would not recall their original answers, but not long enough for participants to have forgotten about the study or for the study to incur a high attrition rate for other reasons.