The aim of the project is to gain more knowledge about young people’s personal stories of coping and recovery from mental health issues, and to explore how these stories can be used to live and manage such issues.
A recovery narrative is a story shared by an individual about their recovery journey, encompassing experiences of both adversity or struggle, as well as strength, success, or survival, in relation to mental health issues (Llewellyn-Beardsly et al., 2019). These stories can include tough times, how one has fought through difficulties, what one finds helpful, how one endures, and/or moves forward.
The project is funded by the Research Council of Norway and consists of four work packages. In work package 1, which we call the “NEON Young Collection”, we aim to generate as many coping and recovery stories from young people as possible. We will analyze the content of these stories to enhance our understanding of them and their typical characteristics.
We are looking for participants aged 16-30 who have either previously published a story about living with or experiencing recovery from mental health issues, or who have not yet shared their story, but would like to include it in the project.
Participants for this study will be recruited through three different channels:
- The NEON Young Norway Study’s website and press releases related to the project
- Websites of Nord University and collaborators
- Social media (Facebook, TikTok, Instagram, etc).
The aim of the project is to gain more knowledge about young people’s personal stories of coping and recovery from mental health issues, and to explore how these stories can be used to live and manage such issues.
A recovery narrative is a story shared by an individual about their recovery journey, encompassing experiences of both adversity or struggle, as well as strength, success, or survival, in relation to mental health issues (Llewellyn-Beardsly et al., 2019). These stories can include tough times, how one has fought through difficulties, what one finds helpful, how one endures, and/or moves forward.
The project is funded by the Research Council of Norway and consists of four work packages. In work package 1, which we call the “NEON Young Collection”, we aim to generate as many coping and recovery stories from young people as possible. We will analyze the content of these stories to enhance our understanding of them and their typical characteristics.
We are looking for participants aged 16-30 who have either previously published a story about living with or experiencing recovery from mental health issues, or who have not yet shared their story, but would like to include it in the project.
Participants for this study will be recruited through three different channels:
- The NEON Young Norway Study’s website and press releases related to the project
- Websites of Nord University and collaborators
- Social media (Facebook, TikTok, Instagram, etc).
Your story can become part of the NEON Young Norway Study if it meets all the criteria below:
- The story is told by a person who has experienced mental health issues and has found a way to cope with them
- The story includes descriptions of adversity or challenges related to mental health issues. These descriptions can take up a large or small part of the story
- The story includes descriptions of strengths, coping, or survival. These descriptions can take up a large or small part of the story
- The story must cover events or changes over time (e.g., changes in mood, views or perspectives)
- If the story contains speech or text, it must be in Norwegian, Southern Samì, or English
- The story must be in a digital file
These stories will be rejected:
- Stories presented as fictional/fantasy
- Stories told be someone else than the person experiencing mental health issues, recovery, and/or coping
- Stories told when the person is younger than 16 or older than 30 years at the time It was submitted to the research project
- Stories where the quality of the audio file/video or image is so low that the story is challenging or impossible to understand
- Stories composed of multiple files that cannot easily be combined into a single file or format
- Stories that describe dangerous/harmful actions in such detail that they could inspire others to do the same
- Stories that in any way promote violence and hate speech towards others and could encourage criminal acts
- Stories that provide information about another person that could be harmful to them or those around them
- Stories that contain sensitive information about other people, unless they have themselves shared this information publicly. A story contains sensitive information about another person if it reveals their name, political or religious beliefs, mental or physical, health, sexual orientation or behavior, or crimes they have committed or are accused of committing
- Stories that create other unforeseen concerns in such cases, this list of reasons for rejecting a story may be updated
The project team in the NEON Young Norway Study decides which stories can be included in the research project based on the outlined points. Contributors will be notified whether their story is accepted or not. If a story is not included, the contributor will receive an explanation for the decision.
We believe that your coping, and recovery story is interesting and important to share. Sharing your story can increase knowledge about what is important when young people struggle with mental health issues. Furthermore, the story can be an inspiration, provide hope, and offer new perspectives to young people who are struggling and to adults who wish to support them. Telling your story can help you understand what has been important to you. However, sometimes it can also trigger reactions in you. You may be reminded of past experiences, experiences you have forgotten or tried to put aside. Therefore, we have compiled an overview of resources and places where you can get support if it becomes difficult.
We will publish data from this project in various ways, such as scientific articles, short videos, media coverage, conference presentations, and educational materials. Depending on the format and content, quotes, parts, or entire recovery stories may be published. If you tell your story and use your real name and age, people may recognize you in publications. This can be uncomfortable. Therefore, it is wise to consider how you want to share your story, as details such as your first name/nickname, age, pictures of you, your voice, or links to your blog, website, etc., can make it easier for others to recognize you. To prevent recognition, you can remove personal information such as name, age, and specific events from your story. It is also easier to anonymize a text than a speech or video, as your voice and face are easily recognized if you present your story in an interview/video/podcast format.
If you are under 18 years old, it may be wise to talk to your parents or other trusted adults before deciding to participate in the project. If you change your mind about the story, you are now sharing, you can later rewrite the story, expand it, or withdraw it from the project.
Participation in the project is voluntary. You can withdraw at any time, request changes, or add elements to your coping and recovery story. There will be no negative consequences for you if you request corrections or deletions of information. If you can be identified in the data material, you have the right to object, request access, and request corrections and deletions of the information we process about you. You will hear from us within a month. We will provide a good reason if we believe you cannot be identified or if the rights cannot be exercised. The right to deletion may be limited if the information has been included in completed analysis or if the material has been processed and included in publications. If your information is part of a video game or educational material, we can delete the original data if you withdraw your consent, but not the game or material that has already been created. You have the right to complain to the Data Protection Officer about how we process your information.
If you later would like to withdraw or have questions about the project, you can contact the principal investigator. Detailed information could be found under Contact Information.
The information recorded about you will only be used as described under the aim of the project. Any extensions in use can only occur after approval from the Regional Committee for Medical and Health Research. The project is scheduled to conclude on 01.10.29. After that, the information will be stored for 5 years for documentation purposes, until 01.10.34. After this five-year period, the information will be anonymized. This will be done by deleting rewriting, or broadly categorizing the information and deleting the key to the data.
We treat personal data confidentially and in accordance with data protection regulations. Nord University, represented by the principal investigator, Kristin Berre Ørjasæter, is responsible for the data processed in the project.
This is a larger research project where we collaborate with staff in Snåsa and Åfjord municipality, Mental Health Youth Organisation, young people with lived experience of mental health issues, and researchers from NTNU, The National Center for E-Health Research, Finmark Hospital Trust, and the University of Nottingham.We will limit the number of people who will have access to your personal data. The following individuals will have access to the data material with personal information: the principal investigator, one postdoctoral researcher, and PhD candidates. Additionally, partial access will be given to work package leaders, bachelor’s students in game and entertainment technology who will develop games based on donated stories, project staff who will transcribe data, and a translator from Snåsa municipality who will ensure that stories conveyed in Southern Samì are understood by the research team. Workshops where we present some stories will be arranged, but the stories will be pseudonymized or anonymized.
Your personal data will be replaced with a code stored on a separate name list, apart form other data, in a secure project area at services for sensitive data (TSD) owned by the University of Oslo. TSD meets the strictest legal requirements for handling and storing sensitive research data. The code is linked to your story to identify it if needed. Examples include if you wish to withdraw the story.
You have the option to use your first name/nickname and age in connection with your story. You could also suggest a fictitious name. In publications we will generally use fictitious names/codes created by the research team to prevent recognition of individual participants. If you have indicated that you want us to use your first name/nick name or a fictious name chosen by you, we will, of course, use this in publications and other dissemination work from the project.
After the project ends, the collected data will be stored at Nord University. Only the principal investigator will have access to the data with personal information.It may be relevant to contact you again in connection with new research projects. In such a case, we will send you information about this.
We process the information based on public interest and for purposes related to scientific research. To ensure participation in the project, we ask for your consent to participate. Nord University, represented by the principal investigator Kristin Berre Ørjasæter, is responsible for data protection in the project.
On behalf of Nord University, the data protection services at SIKT – the service provider for the knowledge sector, have assessed that the processing of personal data in this project complies with data protection regulations (ref.no. 545210).
The Regional Committee for Medical and Health Research Ethics has conducted an ethical review and approved the project (ref.no. 664616).
Samì Health Research has conducted an ethical review and given collective Samì consent to carry out the research project (ref.no. 1119960)
If you have any questions about the project, experience any adverse events, or wish to withdraw from participation, please contact:
Kristin Berre Ørjasæter, Principal investigator, The NEON Young Norway Study. Phone: +47 742 1227. E-mail: kristin.b.orjasater@nord.no
Toril Kringen, Data Protection Officer at Nord University. Phone: + 47 740 22750. E-mail: toril.i.kringen@nord.no
If you have questions related to Sikt’s assessment of the project, you can contact them via e-mail: personverntjenester@sikt.no, or by phone: + 47 739 84040