Participants sought for studies Parents of children with autism wanted for research study: GENA-barn
We are looking for parents of autistic children aged 2–15 years to take part in the GENA-barn research project at Karolinska Institutet.
Has your child been diagnosed with autism within the last two years?
GENA stands for Genetic information and autism. In this project, we explore how genetic information can be communicated in a way that is understandable, helpful, and supportive for families. We want to learn how parents perceive information about genetic and environmental factors behind autism, and how this knowledge may increase a sense of empowerment and understanding.
No genetic testing is included in the study.
What is GENA-barn about?
The GENA-barn research project builds on previous studies of genetic counseling in autism. We want to examine how a structured conversation about genetic and environmental factors works for parents of children who have recently received a diagnosis.
We hope that this study will provide new knowledge about how genetic information can be used in a safe and understandable way in healthcare. Our goal is to develop a tool that could potentially be used in healthcare in the future, to provide better support for families after diagnosis.
Who can take part in the study?
We are looking for participants who:
- Are parents of a child aged 2–15 years
- Have a child who received an autism diagnosis within the past two years
- Speak Swedish or English
What does participation involve?
The study has two parts:
- Interview – a digital conversation lasting 30–60 minutes, where you will be asked about your experiences following your child’s diagnosis and what kind of information you felt you needed. Everyone who signs up takes part in this part.
- Information session – a structured conversation (around 60–90 minutes) with a clinician, where you will go through genetic and environmental factors related to autism. You can choose after the interview whether you want to register for this second part or not.
Between the sessions, you will be asked to complete short questionnaires about your experience of the conversation and your sense of knowledge and control (empowerment). The study is conducted entirely online. You can participate digitally and choose the time that suits you best for the interview and, if you wish, the information session as well.
Gift cards
As a thank you for your participation, you will receive a gift card worth 200 SEK after the interview and another 200 SEK after the information session (if you choose to take part).
Interested in taking part?
Register your interest on the link below. Form in Swedish. The research team will contact you to provide more information about the study before you decide whether you want to participate. More information in Swedish in the document below.
Participant information in Swedish
Processing of personal data
Your personal data is processed for the purposes of this study in accordance with GDPR (General Data Protection Regulation). The legal entity responsible for processing of your personal data is Karolinska Institutet. The Data Protection Officer can be reached at dataskyddsombud@ki.se. The data will be analyzed on a group level, handled confidentially and it will be stored in a secure database at Karolinska Institutet. You can terminate your participation in the study at any time.