A researcher from Trinity College Dublin is conducting a study examining how parents who care for a child with a chronic condition (such as epilepsy) manage the overlapping responsibilities of being a caregiver with other life roles, and how this affects their well-being.
We know from supporting parents of children with epilepsy,particularly where the condition is complex, that they can find themselves not only acting as parents but also as informal caregivers, employees, partners, and more - often simultaneously. Much of the literature to date surrounding caregiving seems to focus on the word "burden", and attributes it to the role of caregiving. However, this study is aiming to explore how balancing multiple demanding roles at once - especially where supports may be lacking - may be a driving factor for "burden"; rather than the caregiving component in and of itself.
The primary aim of this research is to understand:
- How caregiving parents experience and balance multiple roles in daily life (e.g., caregiver, parent, worker, partner).
- Whether the overlap of these roles contributes to stress or strain, independent of caregiving tasks.
- How formal and informal support systems affect their ability to cope.
By better understanding these dynamics, researchers hope to contribute to more holistic and effective support strategies for family caregivers. The findings will help inform future interventions and support strategies that consider the full context of a caregiver’s life.
The study is open to parents of children under 18 who are living with a chronic condition and we know that many parents of children with epilepsy may be able to provide invaluable insights and perspectives to this study. Taking part involves a short online survey, which is anonymous and should take no more than 20 minutes to complete. You can take the survey on Surveymonkey via the button below:
If you would like more information about this research, you can contact the study lead Savanna Daquila by emailing daquilas@tcd.ie
Thank you in advance for completing this survey and we look forward to hearing more about this research when it has completed.
In the meantime, should you need any information or support on your child’s journey with epilepsy, please get in touch with your local Community Resource Officer. You can find their details by visiting the ‘Our Local Services’ section or our website. You can also find out more about our services for young people with epilepsy by visiting the 'Young Epilepsy Programme' page on our website.