Participant Information
Grace C. Fitzallen, Lecturer, School of Psychology, University of Tasmania
James N. Kirby, Senior Lecturer, School of Psychology, University of Queensland
Thank you for your interest in participating in this research project. Please read the following information about the project so that you can decide whether you would like to take part in this research. Please feel free to ask any questions you might have about our involvement in the project.
If you decide to participate in this research, please keep in mind that your participation is voluntary. If you do not wish to take part, you do not have to. If you decide to take part and later change your mind, you are free to stop at any time, and you would not need to give any explanation for your decision to stop participating.
You will be asked to read the Participant Information Sheet and give your informed consent. Your decision, whether you take part, or not to take part, or to take part and then withdraw, will not affect your relationship with the University of Queensland.
What is this research about?
We invite you to take part in a research study about your experience as a parent of a preterm infant. We want to learn more about how you experience compassion as a parent of a preterm infant and explore your preferences surrounding an online compassion-based intervention. This will be funded by the Compassionate Mind Research Group and The University of Queensland.
What will I need to do?
If you are eligible to participate, you will be asked to provide your informed consent. We will then invite you to complete some questionnaires regarding your experience as a parent of a preterm infant. Once you have completed these, a member of our research team will contact you to confirm your allocation to a 60–90-minute focus group and give you first access to an existing compassion-based intervention to review. Your focus group will be conducted via Zoom, with 6-8 other parents of preterm infants. We will have a series of collaborative group discussions and activities where you can share your experiences and actively contribute to help shape an intervention tailored specifically for parents of preterm infants. These sessions will be recorded and transcribed for the purpose of analysis.
What are the possible benefits of taking part?
We want to learn about the experiences of parents of preterm infants. While there are no immediate benefits from taking part, by sharing your insights, you will help shape the development of an online compassion-based intervention designed to support parents like you. This co-design approach values your lived experience and active collaboration, which many participants find empowering. To acknowledge your time and effort, you will receive a $20 gift card upon completing the full study process. Please note: if you choose to withdraw before completing the study, you will not receive the gift card.
What are the possible risks and disadvantages of taking part?
We understand that some topics of discussion may involve potentially traumatic experiences which could trigger feelings of distress. Researchers will be alert to any signs of distress, and although they are not able to provide mental health support, they will direct you to the appropriate support services.
If completing the study brings up anything you would like to talk to somebody about, the following links below might be helpful:
- PANDA (Perinatal Anxiety & Depression Australia) - 1300 726 306
- Lifeline - 13 11 14
- Beyond Blue - 1300 22 4636
- Suicide Call Back Service - 1300 659 467
You will also receive a follow-up email within two weeks following the focus group to check in and remind you of these support services.
If you would like to contact the researchers about anything related to the study please contact Dr James Kirby on j.kirby@psy.uq.edu.au.
What will happen to the information about me?
All information collected about you will remain confidential, and we will not keep identifying information (such as name and contact details) in the same place as the video recordings and transcripts. However, due to the focus group setting and small number of participants, confidentiality may be limited. The focus group facilitators will reiterate the importance of confidentiality for all participants.
All data will be de-identified and stored electronically in a password-protected folder within the University of Queensland’s Research Data Management system. Only authorised members of the research team will have access. In accordance with UQ policy and relevant legislation, data will be retained for a minimum of 5 years from the completion of the study, and all recordings will be destroyed following transcription. With your consent, we may use direct quotes from focus group responses as testimonials in the final intervention, future publications and presentations. All quotes will be de-identified to protect your privacy. A tick box will be included on the consent form for you to indicate whether you give permission for your quotes to be used in this way.
It is anticipated that the results of this research project will be published and/or presented in a variety of forms. In any publication and/or presentation, information will be provided in such a way that you cannot be identified.
What will happen if I decide to withdraw?
Your participation in this research is voluntary and you are free to withdraw from the research anytime without needing to provide any explanation, and you would not receive any penalty or bias as a result of your withdrawal. Should you decide to withdraw, you may request that unanalysed data be destroyed. However, please note that will not be possible to remove your data after it has been de-identified.
Can I hear about the results of this research?
You will have the option to receive a plain-language summary of the study findings once the research is complete. If you would like to receive a summary, please opt-in by ticking the box on the consent form.
Who can I contact if I have any concerns about the project?
This study adheres to the Guidelines of the ethical review process of The University of Queensland and the National Statement on Ethical Conduct in Human Research. Whilst you are free to discuss your participation in this study with the researcher contactable on teagan.collins@uq.edu.au if you would like to speak to an officer of the University not involved in the study, you may contact the Ethics Coordinator on +617 3365 3924 / +617 3443 1656 or email humanethics@research.uq.edu.au.
This research Ethics ID number: HE002009
- I consent to participate in this research project. It has been explained to me that the purpose of this research is to investigate parents’ experiences of compassion after preterm birth, for the development of an online mental health intervention. I have also been provided with a written project information sheet in a language that I can understand.
- The possible risks of participating in this research have been explained to my satisfaction. I understand that in this research I will be required to attend a focus group via Zoom, and provide my feedback on an intervention prototype. I understand that my conversations will be audio/video recorded.
- I understand that participating in this study may involve reflecting on personal experiences, which could cause mild discomfort. I have been provided with relevant support services in case of distress. I understand that my participation is voluntary and I am free to withdraw from this research anytime without needing to provide any explanation, and I would not receive any penalty or bias as a result of my withdrawal. Should I decide to withdraw, I understand that I can request for my data to be destroyed and not used in the research. However, I also understand that it may not be possible to remove my data after it has been de-identified.
- I understand that data collected for this research will be stored electronically, in a password-protected folder, and only authorised members of the research team will have access to the data. I understand that given the focus group setting and small number of participants, it is not possible to guarantee complete anonymity.
- I consent for my data to be used in future research that is an extension of or related to this project.
- I understand that this research adheres to the Guidelines of the ethical review process of The University of Queensland and the National Statement on Ethical Conduct in Human Research. I have been provided with contact details of the researcher, as well as UQ Ethics Coordinator.