Data gathering

Three dyads, all married couples, participated in a focus group interview, immediately after attending one of the patient learning courses for persons with dementia mentioned above. In this way, we received an opportunity to explore the persons’ fresh experiences with participating in these courses. In addition, we had an

opportunity to initiate a conversation between the participants concerning their experiences with participating in the study as a whole. Further, three dyads

participated in in-depth interviews with both the person with dementia and informal caregiver present. Three informal caregivers also participated alone in in-depth single interviews. After all interviews with dyads and informal caregivers alone were completed, we conducted a combined evaluation meeting and focus group interview with the two coordinators and their leader.

Based on our initial research questions and experiences made throughout the project period, we developed a semi-structured interview guide for the interviews with the dyads and informal caregivers, see Appendix 4. For the focus group interview with the dyads participating in the patient learning course for persons with dementia we started with some additional questions concerning the course to gain insight into experiences considering this. In this focus group interview, one of my co-supervisors (OT) participated as a co-moderator. For the focus group interview with the

coordinators and their leader, a new, semi-structured interview guide, see Appendix 5, was designed, based on the initial research questions, experiences throughout the project, and experiences from the interviews with participating persons with dementia and their caregivers. Also in this focus group interview, one of my supervisors (OT), participated as a co-moderator. In addition, our co-researcher with user-experience as an informal caregiver for a person with dementia, participated as a second

co-moderator. In this way, we were able to draw on experiences from the interviews with the participating persons with dementia and their informal caregivers when planning the final interview-evaluation with the coordinators and their leader.

2.4.4 Data interpretation

All interviews were audio recorded and transcribed successively. After transcription, each interview was examined in an initial analysis in order to search for aspects to pursue in the further interviews. Before the final focus group interview with the coordinators and their leader, I discussed the findings so far with the two

co-moderators, in order to establish congruency in what themes to focus on in this final interview. When all interviews were completed and transcribed, the transcripts were

shared within the research group for individual analysis, followed by shared

discussions within the research group as a whole. Similar to the analytical process for study one, the interviews were analyzed as single texts, as a whole body of texts and each text in relation to the whole body of texts (Gadamer, 2013). Then, our findings were brought into dialogue with relevant theory. As we had found the care

philosophy of Kari Martinsen (2006) to be well responding to our findings in study one, we wished to follow this up in this study as well. We found that her writings brought interesting new horizons of understanding that responded well to our findings in this study.

2.4.5 Ethical considerations

The main informal caregivers in eligible dyads were first contacted by their contact person from the site of recruitment. They were informed about the purpose and entails of participating in the study and asked to discuss participation with their families or others involved in the care for the person with dementia. If interested, they were contacted by one of the coordinators and the first home visit was planned, as described above. Here the information about the study was repeated along with detailed information on data gathering, both in terms of questionnaire data and that they might be asked to participate in a single or focus group interview at the end of the intervention period. They were also informed about their right to withdraw from the whole study, or parts of it, at any time without any consequences for their follow up. Both the persons with dementia and their informal caregivers signed written forms of consent to participate. This also included written consent to participate in qualitative interviews as part of the evaluation of the study, see Appendix 6.

Participants in the focus group interview from the patient course were informed and asked about participation beforehand by the course leader. For the single and dyad interviews, the informal caregivers were contacted by myself and asked about participation along with repeated information that participation was voluntary, that they might withdraw at any time without consequence as well as information about data gathering and treatment. This information was repeated before starting the interviews. For the focus group interview with the coordinators and their leader, this

same information was repeated along with information that they should be cautious about their duty of confidentialty towards the dyads and that they should strive to preserve anonymity when describing experiences. The coordinators continued to follow up the dyads after the study intervention period was over, according to the needs and wishes of each dyad. As there was only one female and one male

coordinator, we have referred to them as female, that is she/her, in order to preserve their anonymity as well as possible.

The study was approved by the Regional Committee for Medical and Health research Ethics, Northern Norway (2017/1519 REK Nord), see Appendix 7.

Results