Family course for children with rare skeletal diseases

Kela provides family courses for children with rare skeletal diseases. The adaptation training is multidisciplinary and group-based.

At the course, the child and the family are provided with support to manage problems in their daily life and help to handle the situation. The aim of the rehabilitation is to improve functional capacity, life management and self-care skills. At the course, the family is also provided with information about the condition from which the child is suffering and about rehabilitation practices and support networks available in their area.

The family course is suitable for children

• who are under school age, of primary school age or lower secondary school age
• who have been diagnosed with a rare skeletal disease, for example
  • Osteogenesis imperfecta (also known as 'brittle bone disease')
  • Skeletal dysplasia or some other syndrome causing short stature
  • some other developmental skeletal or joint disorder.

Purpose of the course

The aim of the course is to provide comprehensive information and guidance for the child and the family, and to enable them to continue to live a full and meaningful life despite the child’s illness or disorder.

Rehabilitation is also a way of strengthening the family’s resources and life management skills as well as a means of providing support for the family and its support networks. It also provides opportunities to meet other families who are in a similar situation.

Content of the course and implementation

The rehabilitation is implemented as group rehabilitation taking each child’s and family’s individual goal and need for rehabilitation into consideration.

The course includes group discussions and working in small groups, a variety of activities as well as individual interviews, meetings and discussions with rehabilitation experts.

The rehabilitation is arranged on the service provider’s premises. The course lasts 5 days.

The child’s family accompanies the child throughout the rehabilitation. As a rule, 1 to 2 adult close relatives and 1 to 2 siblings participate in the family course. Siblings under the age of 2 can always participate in family rehabilitation. If a child has more than 2 siblings over the age of 2, Kela will assess whether they should participate in the rehabilitation. We will also ask the service provider if they are able to plan and carry out the rehabilitation in a way that makes it possible for several siblings to participate.

The family can stay overnight at the place of the rehabilitation or travel there from home each day.

The service provider contacts the family before and after the rehabilitation.

Course personnel

The course is implemented by the following experts:

• specialist in children’s diseases, pediatric surgery or plastic surgery
• registered nurse or public health nurse
• physiotherapist
• social worker, Bachelor of Social Sciences or rehabilitation instructor.

Depending on the child's individual needs, other rehabilitation professionals and assisting personnel may also take part.

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