Can you please share this fully OA paper with the group [*see note below]
Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study
This is a unique research paper that speaks volumes about the willingness of parents who have children with congenital anomalies in Europe, to engage in the co-production of research questions that are relevant to them and their children. This research was produced through genuine team collaboration from parents who are ‘experts by experience’ and internationally recognized researchers in medical genetics, epidemiology, technology, midwifery and science. Parents of children with spina bifida, cleft lip and palate, severe heart disease and Down syndrome consented to become research aware parents (RAPs) and work in co-production with Professor Sinclair, Dr Julie McCullough and Dr David Elliott who were leading the ConnectEpeople project (part of the EUROlinkCAT H2020 study). The study contributes to our knowledge about the value of the State Trait Anxiety Scale (STAI) as a parental measure of their personal wellbeing prior to taking part in sensitive research. In addition, the study demonstrates the power of social media to connect parents across geographical and cultural boundaries. The research team wish to thank the parents who took part in the study whilst caring for their children who have very complex health and social care needs. Their generosity was evident and we stand in awe of their ability to multi task and cope with supporting their children, their local organizations and taking time to engage with us on Facebook.
HIFA profile: Marlene Sinclair is a researcher with an interest in mobile telephony, based at the University of Ulster, Northern Ireland. M.Sinclair1 AT ulster.ac.uk
[*Note from HIFA moderator (Neil PW): Thank you Marlene. I would like to note for the benefit of others that you are the lead author of this paper. It's great to highlight research done by HIFA members as this allows questions and discussion about the paper and its implications.]