Data Collection

The IDS-TILDA study comprised two main data collection components in wave one: the Pre-Interview Questionnaire (PIQ) and a Computer Assisted Personal Interview (CAPI), which was the main face-to-face interview. An objective health assessment was added in wave two; however this was not a feature of data collection for the current study. Each fieldworker was given a caseload with contact details of participants to manage and complete. The main elements of the data collection process were as follows:

 Fieldworker training was provided over three days in March 2013, covering: the study aims and objectives; questions and variables in the PIQ and main questionnaire; caseload management and fieldworker responsibilities; ethical procedures; use of the CAPI; run-through of the data collection process; practice of each element of the process; procedures for data entry of PIQ and uploading of data. Along with data cleaning and validation approaches (see 3.3.6 below), the systematic fieldworker training process aimed to ensure a high degree of consistency between interviewers.

 Following training, individual fieldworkers made contact with each person in their caseload to introduce themselves and to arrange a suitable time and place to conduct the interview; participants were also notified at this time that they would be sent the PIQ, which should be completed by them (with assistance if required) and then collected by the fieldworker when they called out for the interview; a period of approximately two weeks was left

61 before the interview to allow time for the PIQ to be posted out and completed prior to the interview.

 On the day of the interview, upon arrival at the designated place, the fieldworker introduced himself, went through the study information and consent procedures, checked the PIQ for completion, and then conducted the main interview.

 The main interview was usually conducted (directly, supported or by proxy) in one visit but some required additional visits to complete, depending on each individual participant; breaks were taken as directed by the wishes of the participant; additional follow-up was also required at times to obtain PIQs that were not completed on the day of the interview.

 Once all elements were completed, fieldworkers manually entered data from the PIQ into SPSS and uploaded this with the main interview file to the project VPN.

The current study uses data from the entire wave two sample of 701 participants; which includes data collected by the researcher and by the other fieldworkers. Of these, the researcher completed data collection (PIQs and CAPI) for 62 individual cases between May and December 2013. This included collection of information across the entire range IDS-TILDA study variables for the 62 cases. There was a roughly even three- way split in these 62 cases between direct one-to-one interviews, supported interviews and proxy interviews. The vast majority of these took place in the person’s home, with just two taking place in a day service setting.

While the data collection process was the most enjoyable element of the study, one of the most challenging aspects of the data collection process was the logistical effort of

62 arranging interviews. Quite often the contact details for support people or key workers were out of date or the person had moved on in their three year period since the previous interview. This often necessitated several phone calls and follow-ups to find the correct support person and then to agree a time and place for interview. The researcher quickly realised that staff were extremely busy and it was always better to follow up with another call rather than wait for a staff member with several higher priorities to return a call.

In some instances, support people contacted by phone didn’t have any knowledge of IDS-TILDA and were wary about granting access to the participant. Usually staff were reassured once informed about the study in general, on the participant’s involvement in it – and indeed of the importance of the participant’s continued involvement in the study. In a few instances, support staff indicated that the participant’s health had deteriorated since their previous interview (e.g. through dementia) and either would not be up to an interview or not be able to provide the same level of information as they had before. In these cases, the researcher noted the even greater importance that this gave to the participant’s involvement, since changes in status of this nature were exactly the thing we were attempting to capture in the longitudinal study; while the different interview options were outlined for involvement (i.e. support or proxy).

Some challenges also arose during the interviewing process that the researcher needed to negotiate. In two particular supported interviews the participants became upset and anxious, triggered by specific questions related to family. In one case, the person was very agitated to begin with and then became verbally aggressive as he became more anxious through the early stages of the interview. He indicated on a number of occasions that he wanted to participate, yet it appeared that he was unable to continue without becoming more and more agitated. It was eventually agreed with the participant and supporter not to continue with the participant present as it was too

63 upsetting, and to complete the interview with the supporter as proxy. The researcher was satisfied that the participant was happy with this arrangement; and indeed the participant later returned to apologise and to informally speak with the researcher.

On another occasion, a participant in a supported interview was taking part and answering questions very happily until we started into the social connectedness module, and specifically the questions about family and family contacts. At this point he became withdrawn and reticent. The researcher reminded the participant he didn’t have to answer any questions he didn’t want to, and that he could take a break or end the interview at any time. In the end it was agreed to take a break and return to complete the interview on another occasion. When a second visit was arranged the participant indicated that he didn’t wish to take part himself, but was happy for his keyworker to complete the interview as a proxy on his behalf.

Apart from these specific instances, no major instances arose during the data collection process. On a few occasions, the researcher proposed a break and return for a second visit after noticing that participants were becoming tired and didn’t have the energy to continue. In a small number of other instances, the proxy respondents sometimes veered off the course of the interview, either becoming focused on their own situation or else on a service-related issue that didn’t specifically relate to the participant. In these instances it was the role of the researcher to subtly steer the focus back to the participant and the specific questions at hand. However, the vast majority of supporters and proxies maintained the correct focus and were genuinely interested in representing their participants’ views and experiences to the best of their ability; and in general the data collection process was a hugely positive and rewarding experience for the this researcher.

The inclusion of different types of responses to questionnaire items in IDS-TILDA may potentially lead to an inconsistency in responses, depending on whether responses are

64 from a direct, supported or proxy interview; however, research on the consistency of responses in this regard has been inconclusive (Perry 2004, Stancliffe 2000). Some studies have identified inconsistency (Stancliffe 1995, Rapley et al. 1998); whereas other have found consistency (Schalock and Keith 1993, Stancliffe 1999); while others have noted more consistency in objective measures (Perry and Felce 2002). However, studies need to make a judgement on whether it is better to omit proxy responses completely, and therefore exclude people who are unable to answer for themselves, or to accept possible limitations of proxies and include them (Perry 2004). In the current study, it was considered the better option to include the full sample rather than limit the analysis to the direct responses of the most able within the sample. To maintain a high standard of response in supported and proxy interviews, only people who knew the participant for a minimum of six months qualified to provide support or proxy responses for the participant; and in reality the vast majority of supporters and proxies had long- term relationships with the participant that far exceeded this minimum standard.

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