Families of children with ME and their encounters with the health and welfare systems

Fafo and SINTEF, the two research foundations conducting the research project “The Service and ME” (Norwegian), have for five years studied how ME sufferers are met by the health and welfare systems in Norway. Together with The ME Parents, they invited to a seminar in Oslo in October 2022, where they presented preliminary findings that apply to families with children, where either children or other family members suffer from ME.

The ME Parents have been involved as user representatives right from the sketch stage, and have contributed input to and testing of interview and questionnaires in addition to more or less weekly contact for almost 5 years. Both the researchers and we find this very valuable.

At the seminar, we commented and gave our experiences and views on the challenges that families with children with ME face.
There was also a panel discussion on experiences of the meeting with the health and welfare apparatus – not least the Child Protection Services.

Full presentation in English (PDF):

The researchers have quite a few findings that shed light on the situation of children with ME and their families. Here you can find the other presentations made at this seminar. The presentations are in Norwegian, so please use a translating tool to read (click on each “Presentasjon”), but we include a list of them as well:

• Kjartan S. Anthun, senior researcher, SINTEF: The register data on children and families with ME.
• Anne Kielland, researcher, Fafo: Parents and feelings of powerlessness. Presentation of two cases.
• Anne Hege Strand, researcher, Fafo: What does the survey data say about the living conditions of children and families with ME and encounters with school, health and welfare services?
• Line Melby, head of research, SINTEF: Children and children’s families’ encounter with the health services – with emphasis on qualitative findings.
• Arne B. Grønningsæter, researcher, Fafo: The meeting with NAV, child protection – with emphasis on qualitative findings.
• Comment from the Norwegian ME association by assistant general secretary Trude Schei.
  
  There was also a panel discussion on experiences of the meeting with the health and welfare apparatus – not least the Child Protection Services.

Those who understand Norwegian, can even see the seminar on Fafo TV