Palliative care unit improves children’s quality of life in the Iberian Peninsula

Kastelo is the first paediatric palliative care unit in the Iberian Peninsula. Located in the city of Matosinhos, in Portugal’s Norte region, the unit provides clinical and psychosocial services to 30 children with chronic diseases. These services improve children’s quality of life, provide continuity of care in a welcoming setting, and reduce the time that young people and their families have to spend in hospitals.

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Kastelo palliative care unit playground © Teresa de Jesus Gonçalves Fraga Tavares Kastelo palliative care unit playground © Teresa de Jesus Gonçalves Fraga Tavares

" We promote quality of life, pain avoidance and the emotional stability of parents so that families do not miss out. European funds were the basis of this oasis of happiness. It is thanks to these that our children can dream like any normal healthy child, have hope and enjoy a good-quality life. "

Teresa Fraga, nurse at Kastelo and president of the No Meio do Nada Association

Set up by parent support group, the No Meio do Nada Association, the unit cares for children aged up to eighteen, with different conditions. In addition to medical treatment, physical and speech therapy, and specialist education, resources support children’s families and enjoyment of life. These include an outdoor play and physiotherapy area, an orchard, vegetable garden and mini farm, and a residence and garden for parents. 

Since the unit opened in June 2016, it has treated almost 70 children. In 2017, Kastelo received the Norte programme manager’s ‘We are Norte’ award for inclusion.

‘Whole person’ care

Kastelo fills in a gap in the Portuguese national health system. Often, children with special clinical needs spend long periods in paediatric care services or at home in their room, with limited quality of life. Clinical and non-clinical services at Kastelo allow children to live a life as similar as possible to that of healthy children. Their room is used only at night and is only for sleeping.

The unit provides both long-term care for children with special needs and short-term respite for parents who need a break from caregiving. It aims to provide a home-style environment, but with hospital treatment. 

Therapeutic activities fill patient’s days with cognitive, sensorial and psychomotor stimulation. Activities are designed to be fun, but treatment can also improve muscle relaxation, circulation and breathing, prevent new deformities, develop social participation and communication, and control pain without drugs – for example through music or positioning.

Families are included in the programme. Kastelo provides psychological, relationship and conflict guidance, along with parent support groups. Families also receive help to achieve goals with their children at home and manage social issues, including combining work with caregiving. 

Innovative infrastructure

The unit is in an old house in Matosinhos in the north of Portugal’s Metropolitan Area of Porto.  Donated by the Hospital Centre of Porto, the building was adapted to the needs of children who require continuous palliative care. 

Within the unit there are ten beds in a hospitalisation unit, ten in an ambulatory unit and a day clinic for other treatment. The diverse equipment and expertise at Kastelo ensure that children receive appropriate treatment at different stages of their disease. Resources are used efficiently while patients enjoy care in a familiar setting.

Since the unit opened it has created 38 jobs. These are mostly clinical and social work staff, but there are also four management and administrative staff.

As part of its mission to help children experience a more normal life, Kastelo has begun construction of a water park adapted to people with special needs. This will be the second of its kind in the world and the first in Europe.

Beneficiaries

On August 24, 2016, I and Afonso entered KASTELO and soon we felt that we would be happy there, that our life would take a new direction. We would be a normal family. After almost two years we have the life we wanted. We are happy and Afonso evolved like I never thought. For all this, Kastelo has given us the joy of living.

 

Isabel Bandeira, Alfonso’s mother

 

In this enchanted Kastelo, princes and princesses have their space surrounded by verdant meadow, love, happiness and a specialised treatment according to their pathology. Here, I found help and support for my physical and emotional expenditure already in the phase of depression. I'm a caretaker of my grandson, with a rare terminal degenerative disease. In this unit, Fernando has had quality of life, remaining stable. We live everyday as if tomorrow did not exist! I am happy for him and for all the children, because in one way or another they transmit joy. And when they depart from this terrestrial world to the other side of the infinite, they depart with dignity and in peace.

 

Candelaria Neves, Fernando’s grandmother

 

Total investment and EU funding 

Total investment for the project “Pediatric Unit for Continued and Palliative Care (Kastelo)” is EUR 1 531 193, with the EU’s European Regional Development Fund contributing EUR 612 477 through the “Norte” Operational Programme for the 2007-2013 programming period. The investment falls under the priority “Environmental and territorial enhancement and development”.

 

Draft date

29/08/2018

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