Aims of the study

The main aim of this study is to document current sleep management strategies employed by families and or paid care staff caring for children or adults with TSC with severe sleep difficulties.  We aim to describe caregiver experiences of poor sleep in TSC, in relation to sleep management strategies, access to services, and priorities for further action and support. Participants will first complete online questionnaires, a pre-interview screening telephone call (to determine eligibility), and an online Zoom interview (if eligibility is confirmed).

Who can take part in this research?

Adult caregivers (paid or unpaid) aged 18 years and older caring for a child or adult with TSC who is currently experiencing severe sleep difficulties (within the past month). Caregivers must provide overnight care for the person they care for more than 50% of the time within the primary home setting. Caregivers must be proficient in English fluency and comprehension and must be the individual’s primary caregiver (e.g. parent, adoptive parent, adult sibling, legal guardian, paid care staff).

Can multiple caregivers caring for the same individual with TSC participate?

Yes – if there are multiple caregivers who each provide overnight care more than 50% of the time (e.g. multiple family members in the same household) and you meet all other eligibility requirements, all caregivers can take part. Please note, each individual caregiver must complete all components of the study independently (e.g. separate online questionnaires, separate pre-interview screening telephone calls, and separate online Zoom interviews).

The person I care for lives in residential care, can paid care staff participate instead?

Yes – ensuring you are the legal guardian and endorse their participation in the study, and the paid caregiver meets the eligibility requirements and is willing to take part.

How long will participation in the study take?

There are two components to participation. 1) An online survey open to all caregivers (approximately 30 minutes duration) and 2) a Zoom interview with a member of our research team to discuss your own lived experiences of sleep management in TSC (approximately 45 minutes duration). Participation in the Zoom interview is dependent on responses to a pre-interview screening telephone call (approximately 10 minutes).

Please reach out to m.shabetai@bham.ac.uk if you would like to participate or if you have any questions.