What is this study about?
This study forms part of an MSc dissertation at Cardiff University. It aims to explore the experiences of mothers whose child has been diagnosed with a maternally inherited mitochondrial condition. The research will examine the emotional, psychological and social impact of caring for a child with this condition, including how mothers cope with the challenges they face and the support they find helpful. By gaining a better understanding of these experiences, the study hopes to identify ways to improve support for mothers and families affected by inherited mitochondrial conditions.
Who can take part?
You may be able to take part in this study if you are:
- The mother of a child with a diagnosed maternally inherited mitochondrial condition
- Aged 18 years or over
- Able to understand and speak English
- Living in the United Kingdom
- Able to provide informed consent
Unfortunately, you will not be able to take part if you do not meet these criteria.
What’s involved in taking part?
If you decide to take part, you will be invited to participate in a one-to-one online interview with the researcher using Microsoft Teams. The interview will last approximately 45–60 minutes and will involve questions about your experiences of your child’s diagnosis and your role as a parent and caregiver. With your permission, the interview will be audio-recorded and transcribed for research purposes. Taking part is entirely voluntary, and you may choose not to answer any question or withdraw from the study at any time without giving a reason.
Will there be any costs associated with my participation in the study?
No. There are no costs associated with taking part in this study. The interview will be conducted online via Microsoft Teams, allowing you to participate from a location that is convenient for you.
Are there any risks or benefits?
There are no significant risks associated with taking part in this study. However, some of the interview questions may involve discussing personal or emotional experiences related to your child’s diagnosis and your role as a caregiver. You may find some topics upsetting or difficult to talk about. You do not have to answer any question that makes you feel uncomfortable, and you are free to pause or stop the interview at any time.
While there may be no direct benefit to you from taking part, your experiences will contribute to a better understanding of the psychological and social impact of caring for a child with a maternally inherited mitochondrial condition. The findings may help inform future research and improve the support available to mothers and families affected by these conditions.
How do I find out more?
If you would like more information about this study or have any questions before deciding whether to take part, please contact the researcher using the contact details provided below.
Researcher: Rebecca Greaves
Email: [email protected]
