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General Information - English

Why ewopa-renalchild? 

Children and adolescents with chronic renal failure (CRF) have the same basic needs as healthy youngsters. They must have possibilities to play, to learn, to have social activities and contacts, and to feel comfortable and safe.
From time to time these requirements are forgotten or hidden under urgent medical needs that tend to seem more important. In the ewopa-renalchild we want to bring the children's / families' points of view out to the open. We want to remind that their experiences and opinions are at least as important as the medical facts.

Participants

Any professionals who are interested in the care and treatment of children and adolescents with CRF are welcome to join the group. Thus, the group is a multidisciplinary one with psychologists, doctors, play therapists, dieticians, nurses, social workers, teachers, priests and others. This gives a broad and a very fruitful view to all discussions.

Aims of the ewopa-renalchild

In annual conferences with topics from different areas of treatment and care for children with CRF (see below) the participants can share with each other their experiences from different aspects and, thus, we can provide the best available care and treatment to our patients. Our definition of the best treatment includes not only medical treatment but especially psychosocial well-being.

How is the group working?

As the ewopa-renalchild is not an association we have no members. There is no board or annual fee.
However, there is a small coordination group consisting of two pediatric nephrologists ( United Kingdom, France), a psychologist (Germany) and a pediatric nurse (Switzerland). A "mail box" is in the hands of Evelyn Reichwald-Klugger in Heidelberg. Every year during the conference there is a business meeting where we decide who will be the hosts of the next two conferences.

Join the ewopa-renalchild!

By making contact to Evelyn Reichwald-Klugger or anyone else from the coordination group you will get information about the next conferences and their contact persons. Join the group. Together we can make a difference.

Conference topics (examples)

Patients

  • Psychosocial care of children before ESRD
  • RDT in infantsNeuropsychologic development
  • Eating disorders
  • Psychological significance of small stature
  • Body image after TX
  • Drug compliance
  • Adolescents' concerns
    - View of the future
    - Sexual problem
  • Follow-up studies in young adults having left pediatric care
  • Death of child

Care and carers

  • Nursing care:
    - Quality improvement programme
    - Nurse counsellor
  • Coping with chronic illness in the classroom
  • Hospital school
  • Transfer to adult unit
  • Burdens of care
  • Team burn-out

Interaction

  • Multidisciplinary teamwork
  • Teamworking in five pediatric renal units in Europe
  • Role of psychosocial team in the medical management
  • Interaction of disease, care and coping
  • Non-adherence: a medical problem or a psychological phenomenon?
  • Compliance and relationship

Activities

  • Sporting activities following TX
  • "Holiday camp" and rehabilitation

Societal problems

  • CRF and problematic psychosocial background
  • Ethnic minorities
  • CRF-service across Europe
  • w CRF in gipsy families
  • CRF in East European patients

Family

  • Support group for parents
  • Risk factors in families: RDT vs. diabetes mellitus
  • Parental attitudes to enteral feeding modalities
  • Problems of siblings

Treatment

  • Living donation
    - Promotion of living donation?
    - Psychological risk factors
  • "Failure to die" (the inaccurate prediction of death)
  • GH-therapy, psychological impact
  • Dialysis is easy, it's feeding that is difficult
  • Naso-gastric feeding
  • Recruiting children to clinical trials

Ethics and politics

  • Religious aspects in patient care
  • Ethical aspects in treatment of neonates
  • Legislation concerning care in different European
  • countries (organ procurement)