This study was reviewed and granted ethical approval by East of England (Cambridge Central) NHS Research Ethics Committee (Appendix C). Research and development approval was also obtained from Cambridgeshire and Peterborough NHS Foundation Trust, and included permission for recruitment of participants from the specific memory clinic (Appendix D).
2.3.2 Informed consent
All potential participants were given detailed information about the study, enabling them to make an informed decision about whether to participate or not. Eligible participants were provided with an information pack about the study containing a study invite letter and consent to contact form (Appendix E), an information sheet (Appendix F) and a copy of the consent form (Appendix G). The information sheet provided an outline of the purpose of the study and explained what was expected of them if they chose to participate. The information sheet also
included a description of the interview topic areas and emphasised that this process was participant led (i.e. that participants had autonomy to decide which questions to answer and how much to say on each topic area). Potential participants were also encouraged to take at least 24 hours from receipt of the information pack before expressing their interest in the study, to allow sufficient time to consider the information received.
Steps were taken to try and ensure that potential participants did not feel coerced into participating. The voluntary nature of participation was emphasised in the information sheet and also reiterated verbally by the researcher prior to obtaining written consent. Potential participants were assured that their decision to participate would in no way affect the care and treatment they received from their NHS service. They were also assured that their own clinical psychologist would not be informed about their decision to participate or not.
Potential participants were only contacted once they had signed and returned the consent to contact form. The researcher then answered any questions, checked
that the potential participant had read and understood the information provided, and reconfirmed that they met the eligibility criteria. The researcher then arranged to meet the participant to complete the interview. Written consent was obtained immediately prior to commencement of the interview. The participant was given a copy of the signed consent form for their records.
2.3.3 Confidentiality and data protection
Participants were made aware of limits to confidentiality and data protection procedures prior to giving consent to participate in this study. This information was provided in the information sheet, and the researcher also took time to go through the details of this with potential participants prior to obtaining written consent.
Procedures were adopted to try and ensure confidentiality and protection of participant data as far as was practicably possible, within legislation (Data Protection Act, 1998) and professional good practice guidelines (British Psychological Society, 2009).
The researcher only had access to participant contact details (i.e., name and address) once they had provided written consent to share this information (see Appendix E). Participants were interviewed on a one-to-one basis, by the researcher. Participants were given the choice of being interviewed in a private clinic room at their local NHS memory clinic or in their home. If the participant chose to be interviewed in their home, a convenient time was arranged when privacy could be maintained and interruptions kept to a minimum.
Interviews were digitally audio-recorded and the data file was transferred onto a NHS password-encrypted memory stick as soon as possible after each
interview. The interview data file was then deleted from the audio recorder. Each interview was transcribed verbatim. Once the transcript had been checked for accuracy, the audio data file of the interview was deleted from the memory stick.
Each participant name was replaced with a unique alphanumeric code and any identifiable information (e.g., names and places) removed from the transcript, to ensure anonymity as far as possible. Alphanumeric codes did not contain any
identifiable information (i.e., participant initials). Codes were allocated in order of participation. A list of codes and corresponding participant details was retained to allow the researcher to identify specific participant data, should the participant wish to withdraw from the study. This allowed the data to be identified and withdrawn, if necessary, until the point at which the report was written up. However, no
participant asked to withdraw from the study.
Anonymised transcript data were saved on an NHS password-encrypted memory stick for use on other computers. The list of codes identifying the
participants, consent forms and transcript data were stored securely and separately in locked filing cabinets at the University of East Anglia, accessible only to the
researcher and research supervisor. All data will be kept for 10 years after the study has ended in line with the University of East Anglia’s research policy, after which it will then be destroyed.
Participants were informed that anonymised excerpts from interviews may be included in the study write-up. Participants were also made aware that, should the researcher seek advice from the clinical supervisor and/or staff at the University of
East Anglia during the data analysis phase, only anonymised transcript data would be used during such discussions.
2.3.4 Potential risks/burdens
As participants were invited to openly discuss their experiences of
undergoing a neuropsychological assessment for possible dementia, there was a risk that they might become distressed during the interview process.
This was addressed by providing potential participants with detailed
information about the aims of the study, namely, what taking part would involve and the interviews topic areas covered, beforehand, so they could decide whether or not to participate. Participants were also assured that they could stop the interview at any time and did not have to answer any questions they did not want to. Plans were put in place should any participant become distressed. Had this happened, plans were to stop the session, provide the participant with the opportunity to briefly discuss these issues with the researcher, who is a trainee clinical psychologist, and, where
appropriate, advise them to contact their own clinical team. All participants were debriefed at the end of the interview, providing them with an opportunity to reflect on and discuss the interview process, and ask any questions. Participants had already been provided with contact details if they wished to discuss the study further or make a complaint about the study conduct (see Appendix F).
Where interviews were carried out in the participant’s home, the researcher adhered to the University Lone Researcher Policy: interviews were conducted within working hours and a buddy system was used to ensure researcher safety.
Clinical and research supervision was available for the researcher had any distress been experienced during the interview process.