IND Case study World Children’s Day: Nursing care for children with chronic illness

Case Study Submitted by: Teresa Fraga
Country: Portugal

World Children’s Day is on 20 November. In celebration of this day, we bring you a story of nurses changing the lives of children with chronic illnesses – bringing them life and laughter, as well as nursing care.

The first paediatric palliative care unit on the Iberian Peninsula, Kastelo is located in Sao Mamede Infesta, Matosinhos, Portugal.  The project was created by nurse, Teresa Fraga, President of the NoMeioDoNada association, and José Couceiro da Costa, also from the association.

Kastelo looks after children with life-limiting conditions and offers respite to their parents. Since opening in June 2016, it has cared for more than 110 children and created 38 jobs. Kastelo is the first care centre of its kind in the Iberian Peninsula, and only the fourth in all of Europe. The unit has a capacity of 30 beds, where children up to the age of 18 with serious and incurable diseases receive medical treatment, physical and speech therapy, tailored education and care. Psychological support and other resources are also provided to parents and family members, whose role is essential in bringing comfort and joy to the young patients.

“As carers, we thought it was possible to do more for children suffering from chronic illnesses, so we used our experience to create an innovative healthcare project. European funds were the basis of this oasis of happiness,” explains Teresa Fraga.

Kastelo also has an animal enclosure, a recreational area for outdoor physiotherapy, an orchard, a vegetable garden and a residence for families. It also includes a water park adapted for children with special requirements – the first of its kind in Europe and the second worldwide. Speaking about the advantages of the water park, Teresa Fraga says, “The important thing here is leisure, sensory stimulation, rehabilitation and, of course, play.”

“Here we work a lot as a team,” adds Raquel Pereira, who works as an occupational therapist. “You notice a lot of difference from other sites because of that. They are like our family too.

The children at Kastelo have metabolic and neuromuscular diseases, cerebral palsy, traumatic brain injuries and autoimmune diseases.  A specialist care nurse, Teresa Fraga worked in neonatal and paediatric intensive care units and dreamed of building a dedicated centre for children with special needs to give them and their parents a better quality of life. That dream came true in 2016 when Kastelo opened its doors, giving children with serious and incurable diseases, as normal a life as possible, reducing the time spent in hospital, and supporting the parents and families. Kastelo’s philosophy is “to give life to children’s days, not days to life”.

“This palliative care unit is fundamental to transform the way we perceive care for children, says Fraga. “Nurses are a central element of this transformation and we must understand that all the staff is a fundamental key to improve the wellbeing of children.”

Click here to watch a video (in Portuguese) about Kastelo.

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