Expert Interviews

3.3.2 Primary Data

3.3.2.1 Access to the Field

The networks of three contact persons at Cardiff University were accessed and eventually led to contact details, mostly mail, of a number of potential interview partners. The e-mail subsequently sent to them contained information about the proposed research that this thesis would entail and the requirements for their participation as experts: They were informed that it would need 1 hour maximum and in case of time constraints less time would be feasible. A requirement was the knowledge of strategy or policy related to dementia diagnosis and services in Wales due to their involvement in dementia policies or services either at the current time or in the past. After receiving rejections, one on the basis of their perceived lack of expertise and another due to the restrictive rules of their organisation, I was referred to other people, and successfully interviewed four experts.

This number of interviewees was seen as appropriate as the aim of these interviews was to supplement the policy documents, providing a more nuanced, contextual account of the reasoning behind particular policy aims and decisions related to early/timely diagnosis.

An information sheet and a consent form were sent to each interviewee via e-mail. The former explained in more detail the purpose of the study, the reason why they had been invited, what happens if they took part, disadvantages, risks and benefits of their participation, and what would happen to the results of the study. The consent form made sure that they understood the information, had their questions answered, emphasised the participatory nature of their commitment with freedom to withdraw at any time without giving a reason, and informed them about the recording of the interview and their strict anonymity.

An interview guideline was developed beforehand and reviewed by Professor Dr Christine Färber at HAW Hamburg and the research fellows Dr Alexandra Hillman and Dr Martin O’Neill at Cardiff University. Its aim was to help keep the conversation in the desired subject area and to not miss any important aspects of their experience and insight, while leaving enough room to adapt. It was considered beforehand that the gathered data would come from people involved in dementia policies or services in the Welsh context. This might limit their statements in some cases to be of relevance only to Wales, however, the phrasing of the questions purposefully covered both England and Wales granted that their expertise would be sufficient. This was mostly the case since the identified policies are partly relevant for Wales or England only or for the whole of the UK and therefore the two countries have significant similarities. This will be considered in the analysis and the presentation of results.

Following the interviews, the audiorecordings were fully transcribed and anonymised. If any names were mentioned, they were replaced with pseudonyms to ensure data protection. Since the aim of the expert interviews was to establish both the experts’

knowledge of policy aims and their perceptions of them, the transcription was done word for word to ensure an accurate record of the content of their reponses, however, words such as ‘yeah’, ‘right’ and utterances such as ‘uhm’ were removed for purposes of clarity and dialect was transformed into standard language. The result is a cohesive text representing the original grammatical structure and wording (see Mayring 2014).

All the documents can be viewed in full in the appendix.

3.3.2.2 Reflection of Interview Processes

The first interviewee seemed very motivated and took the time to travel to Cardiff University where the interview took place. During the interview a very comfortable and talkative attitude was shown, directing the interview most of the time and answering several questions without having to be asked for specific topics or to elaborate. The interview lasted for one hour and all questions were covered.

The second interview was carried out in an area outside Cardiff where the expert’s office was located. The interviewee seemed quite nervous and reluctant to go into depth. It took place in an open space where people did not linger, but walked past regularly which led to distractions including a very short break to let people finish their conversation nearby and leave. During the interview the questions were adapted to have an emphasis less on policies and more on the expert’s specific work in dementia services. Asking for elaboration was necessary several times. In the end the interviewee felt the need to apologise for a perceived lack of knowledge. The interview lasted for 24 minutes.

The third interview took also place in another area outside Cardiff where the office of the interviewee was located. A question from their side led to providing information on the previous interview partners. As the expert was familiar with the first interviewee’s work this led to cutting down statements on respective topics assuming it was heard in the first expert interview. Furthermore, it was perceived as distracting that before the start the interviewee stated there was a colleagues’ event taking place soon on short notice. After a few minutes of talking someone interrupted urging them to come to the event. This led to worries about taking up too much time while simultaneously trying to get enough information. The interviewee did not seem to wish to talk about specific topics spontaneously, but strictly adhered to my questions. Thus, the interview was fully

structured by the previously prepared interview guideline. In the end, the interview lasted for 36 minutes and offered valuable information.

The fourth interview was conducted in an office in Cardiff, the interview situation was perceived as relaxed. The interviewee had been involved in dementia policies before the current job and had to state, as a response to two questions, that due to the time passed their knowledge was not perceived as sufficient for certain topics. Considering the previously conducted interviews, the questions were sometimes adapted to achieve more depth and spot potential consensus or inconsistencies. The interview lasted for 32 minutes.

3.3.3 Secondary Data

The secondary qualitative data consisted of expert interviews carried out between 2012 and 2015, undertaken as part of an ethnographic study of memory clinics focusing on earlier referral and diagnosis of dementia.

Ethnography is a qualitative approach that involves the examination of learned and shared patterns of beliefs, values, language and behaviours of a culture-sharing group over an extended period of time (see Creswell 2013). The ethnographic research approach stems from nineteenth-century Western anthropology where pre-industrial cultures were observed and was first perceived as an addition to ‘ethnology’. Ethnology focused on the comparison and historical analysis of non-Western societies and cultures. Over the years, the term ‘ethnology’ experienced a loss in popularity due to anthropologists carrying out their own fieldwork calling their approach ‘ethnography’ instead. Up till now its meaning has been exposed to various interpretations and re-contextualizations to allow dealing with specific circumstances (Hammersley/Atkinson 1995).

The research project included observations, for many the defining feature of ethnography, in two memory clinics in major teaching hospitals in England and Wales (see Savage 2000). Additionally, patients from each memory clinic and a family member, a carer or a friend were interviewed to examine their experiences and views in the context of dementia diagnosis. Memory clinic staff were interviewed to examine their reasoning behind giving information to their patients. Experts in dementia research reflected on new diagnostic technologies, the impact these might have upon the information available to patients and relatives and what this information might mean (see School of Medicine 2016).

These interviews facilitated a conversation within the limitations of the interview, giving more flexibility towards the interviewee’s talk compared to standardized interviews (see Hammersley/Atkinson 1995). Even though such interviews as the most common in

ethnographic research can appear as casual conversations, an implicit research agenda is underlying them, i.e. accessing the expert’s knowledge for the purpose of the research question (see Fetterman 2010).

As described before, the interviews with memory clinic staff and experts in dementia research were chosen to be included in the current case study. The interviews with patient and carers as well as the conducted observations were not considered appropriate to answer this study’s research questions. On the other hand, the expertise of memory clinic staff and researchers interested in dementia presents two different perspectives to what is described and justified in the policy documents and explained by experts in dementia policies/services. This choice therefore enables the researcher to fulfil this study’s purpose to examine social and ethical challenges in dementia diagnosis from the perspective of policy/services, research and clinical practice.