Philosophy and Approach

Beginning at the end of the chain..

IF looks with the families at what is needed to improve their life and how the local health system has to be improved, so that their children can reach their full potential. The advantage is that all input is used to benefit the target group directly. A realistic view of their problems is described in terms of: - where have successes been achieved? - what went wrong? - why? - what can IF do to improve the local situation? Beginning at the end of the chain, IF CHILD HELP empowers the families and contributes to the improvement of the entire health care system. From bottom to top; from daily care to research and prevention; from CBR to neuro-paediatrics.

IF CHILD HELP does not set up or fund a complete health care system for the target group but improves and empowers the existing potential. The main input is empowering support groups, training of the existing staff at all levels and sharing information and expertise. Directly and indirectly this has a positive influence on the entire care system of a region. A health system that learns to take care of people with Spina Bifida and/or Hydrocephalus is at the same time developing the capacity to solve many other medical problems.

Expertise is being improved by responding to input from parents, professionals and the persons with Spina Bifida and/or Hydrocephalus themselves. Exchange of knowledge between the different projects is the most effective and the best cost- benefit approach. Permanent feedback from ‘the end of the chain' is the main drive, guide and motor.

The objectives of IF CHILD HELP

• To improve quality of and access to medical and lifelong care
• To increase awareness and knowledge on SBH
• To improve owner- & leadership of people with SBH and their caretakers
• To increase preventive measures

The overall strategy to reach these goals is to complement the existing efforts, by building on what has already been achieved by parents and existing service delivery systems.

Target groups of the project

• Children, youth and adults with Spina Bifida and Hydrocephalus
• (primary) caretakers of people with Spina Bifida and Hydrocephalus: parents/family
• Caretakers of people with Spina Bifida: professionals