TSC & Sleep Research Project – Take Part!!

An exciting opportunity to take part in TSC specific research!

Dr Stacey Bissell is an Assistant Professor in the School of Psychology, University of Birmingham. She has a specific research background in tuberous sclerosis complex and specialises in sleep-focused and behavioural research with children with TSC, but also conducts research that focuses on caregiver wellbeing and family lived experiences. She is leading this research project which is open to Irish TSC families. See further details below:

Understanding caregiver experiences of sleep management difficulties in
individuals with tuberous sclerosis complex

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).

Click the link before to bring you to the research site page:

https://bhampsychology.eu.qualtrics.com/jfe/form/SV_eX6vqnf2fLg0AJg

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TSC Ireland

TSC Ireland was established in 2015 and registered as a charity later that year. The founding members were parents of young children with TSC who recognised the need for an Irish organisation that would support, inform and advocate for the TSC community here.

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