Why is the OCEANIC study important?

"I am very grateful for the opportunity to be part of this study and believe it is urgently needed.

In 1994 my seven year old son spent three weeks in PICU where he was diagnosed with Guillain Barre syndrome. The experience had a profound impact on my son and my daughters aged 4 and 18 months . My partner and I stayed at the hospital with our daughters for two and a half weeks keeping watch at his bedside 24 hours a day. Over the years I have searched for material that would support us in working with the ongoing challenges, both emotional and psychological, that we each experienced during hospitalisation and on returning home. It was very hard to navigate and understand how to best support our children. There is no information on the possible effects of PICU and we felt very alone in our attempts to make sense of and understand the experience.

This research is a critical first step in providing clinical staff and families with the understanding and knowledge required to ensure the best possible experience of hospitalisation and to identify and manage the associated trauma that can arise."

Deborah [Mother]

"Being part of this study and participating in it is hugely important as although currently the services that are provided by the pediatric intensive care unit for in-patients are brilliant, the after-care and follow up needs much needed improvement to appropriately support the children and their families and the trauma that follows their stay. And this is why this study is vital because it allows us as parents to have our voices heard by the health services about what improvements should be made and how they should be implemented"

Faire partie et participer à cette étude est extrêmement important bien qu'actuellement les services prodigués par les soins intensifs pédiatriques soient brillants. Cependant les services et les soins à venir nécessiteront beaucoup d'aide, d'efforts pour soutenir et accompagner toujours au mieux les enfants et leurs familles suite au traumatisme subi après leur séjour à l'hôpital. C'est pourquoi cette étude est primordiale / vitale. En effet, elle nous permet à nous, en tant que parents, de connaître vos attentes et vos besoins quant aux services de santé et aussi savoir quelles sont les améliorations que nous pouvons apporter et mettre en oeuvre de la manière la plus efficace possible.

من المهم جدا ان نكون جزءا من هذه الدراسة و المشاركة فيها، فعلى الرغم من كون الخدمات الحالية المقدمة من قبل وحدة العناية المركزة للأطفال الى المرضى الداخليين ممتازة أو رائعة، فإن العناية التي تليها الى امس الحاجة الى التحسين أو التطوير من أجل التمكن من تقديم الدعم المناسب للأطفال و عائلاتهم وصدمة بقائهم أو مكوثهم. و هذا هو سبب أهمية هذه الدراسة لأنها تتيح لنا الفرصة ، كأباء، أن نسمع اصواتنا إلى الخدمات الصحية حول مختلف الإجراءات التي يجب إتخاذها و كيفية تنفيذها على الوجه الأكمل

Aysha [Mother]

"When we look back on the weeks we spent sitting next to our son in PICU, we remember warmly the people who made an effort to understand us. How we were doing, what we needed. After we were discharged and began returning for regular clinics, we made a point of finding these people to say thank you. They always remembered us and asked how we were doing. When people took the time to work out how to best support us as a family, it made a big difference to how we got by, and that is why we think this research is so important. This study is an attempt to understand families like us, who are going through the worst, so that better support can be given."

Fred [Dad], Sally [Mum] & Arthur