Ethical considerations

The research consists of three parts that include text analysis, analysis of investigations within the healthcare system and analysis of adoption-competent support. The text analysis is carried out by Tobias Hübinette and the analysis of the investigations is carried out by Mattias Strand at Karolinska Institutet. When it comes to the third part, to which this information applies, we researchers record and collect therapy and support conversations in a context where we believe there is competence to understand adoption-specific experiences. The conversations are analyzed with the aim of discovering ways of communicating that are supportive for adoptees. The research is conducted completely independently of your therapy or support, so you can choose not to participate in the research and continue the therapy as usual.

For you as an adoptee, the research means that support conversations that you participate in will be recorded if you consent to this in writing. You can choose whether the conversation will be recorded only with audio or also with video. No researcher will be present during the support conversation – our goal is for it to work as usual for you and your support person. If you or the therapist/support person want to delete it after the conversation has been conducted, we researchers will follow your request without listening to the conversation.

The recordings that are included in the study will thereafter be transcribed. We will then remove information that could lead to you or others being identified. The recorded conversations will then be analyzed with a focus on recurring patterns in the conversations. During the course of the project, we will present and discuss the results with therapists/support persons. We will also develop educational resources that can be used within the healthcare sector after the project has ended.

There are three possible risks with the research. Firstly, you may feel singled out as part of a high-risk group in terms of mental ill-health and suicidality. Here we would like to emphasize that your individual experiences may differ greatly from other adoptees who are feeling unwell.

Secondly, you may feel worried that the support will be worse if you choose not to participate in the research, or that the support will be negatively affected by you and your support person being recorded. The research is conducted completely independently of the therapy/support you receive and you are under no obligation to participate in the research. Rather, it is important that you do not participate in the research if you believe that it may have a negative impact on the support. The research is voluntary and you can withdraw from it or discontinue your participation at any time without it affecting your care or treatment.

The third risk concerns privacy violations. To prevent you or your support person from being identified, we will replace any names, geographic locations, and other things that could make people recognizable with pseudonyms when we transcribe the recordings. We will distort voices with software when we present conversation clips in workshops with therapists. Educational resources that we share with the healthcare sector will not contain any data that can be attributed to an individual. In the analysis, we focus on conversation patterns, not the personal characteristics or style of therapists or patients.

If you agree to participate in the research, we researchers will collect and register information about you in the form of recordings of conversations.

The recordings will be processed so that unauthorized persons cannot access them. Recordings and pseudonymized transcriptions are saved and stored on Uppsala University's digital space for storing sensitive personal data. The audio and video files will have code names that are used during analysis. The data will not be destroyed but stored for possible further research, which will then require a new ethical review.

Uppsala University is responsible for your personal data. According to the EU Data Protection Regulation, you have the right to access the data about you that is handled in the project free of charge, and to have any errors corrected if necessary. You can also request that data about you be deleted and that the processing of your personal data be restricted. However, the right to deletion and restriction of processing of personal data does not apply when the data is necessary for the research in question.

You will be offered to receive the results of the project in the form of a written report. These results may be both expected and unexpected. If you do not want to receive the results, you can say no to the offer.

Research participation does not entail any risk of damage covered by insurance. There is no compensation for participation in the project.

Your participation is voluntary and you can choose to cancel your participation at any time. If you choose not to participate or want to cancel your participation, you do not need to state why.

If you want to cancel your participation, you should contact the person responsible for the sub-project (see below).

Project manager is Clara Iversen, Uppsala University, Department of Social Work. E-mail: clara.iversen@uu.se