Providing palliative care for children with disabilities in The Netherlands

Categories: Care.

On a recent visit to Stichting Prisma I met with Linda Tielen, team leader of this very dynamic and passionate organization and had the privilege of having a tour and receiving information on daily activities with the team of Baloe.

For children aged 0 to 18 years requiring more care, there is  Baloe, situated in the ortho-pedagogical day centre at ‘t Overstapje in Raamsdonksveer in the Netherlands, and a part of the Prisma Foundation. Prisma provides care to children and people with all types of disabilities and is one of the organisations in the Netherlands actively involved in the creation of a national network to improve children’s palliative care for children with mental or multiple disabilities.

Prisma is in the process of developing a centre for palliative care with emphasis on respite care, the team reports. “Together we have built up considerable experience and expertise in the field of metabolic diseases, complex forms of epilepsy and children with life-limiting illnesses. We work on the basis of the method “Meer mens” (more human).“ This method is based on the theory of Dr. D.Timmers-Huigens, developed from experiences with people with mental handicaps.

All children are unique and this includes children with special needs. Baloe provides day care and extra care (palliative care) on a daily basis, employing expert professionals in order to provide the best possible care for children with serious disabilities. In consultation with the parents, the individual care of their child is integrated into the daily programme with an emphasis is on a multi-disciplinary approach.

Baloe is also a comfort centre. Atmosphere, rhythm, nursing and comfort care are very important in the daily programme which is tailored to the individual needs of the child and focuses on encouraging, optimally developing and maintaining skills.

Baloe has a small, permanent (multidisciplinary) team, fully aligned with the care needed by the child. Team Leader Linda Tielen, explains, “We always have a small number of familiar faces that know exactly what is happening with the child and the family. Our team consists of nurses, caregivers and social care staff and they have extensive experience. Our strength lies in multidisciplinary cooperation based on equality and respect for each other’s expertise.”

“The employees receive regular training. They always observe the overall situation and will act accordingly. They work with their hearts and they know what the children need. The multidisciplinary team evaluates the situation regularly and adjusts care accordingly. This is also done in close collaboration with an occupational therapist, physiotherapists, speech therapist, music therapist and other professionals.”

Baloe provides this same comfort to parents and siblings: “We realise that having a disability and the conditions connected to it, involves the whole family. This includes helping to handle and solve difficulties as well as bringing some relief within the family”. The Baloe team also support the child and family at home, if needed.

Prisma and Baloe will grow from strength to strength, keeping their motto of “ Comfort and Expertise, providing a safe place for children and families.

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