Vardagens villkor för familjer med barn med funktionshinder – familjestöd. (Licentiatavhandling i pedagogik), Individ omvärld och lärande/Forskning nr.23.
- Författare
- Bernehäll Claesson, I.
- Titel
- Vardagens villkor för familjer med barn med funktionshinder – familjestöd. (Licentiatavhandling i pedagogik), Individ omvärld och lärande/Forskning nr.23.
- Utgivningsår
- 2004
- Stad
- Stockholm
- Utgivare
- Lärarhögskolan
- Sammanfattning
This report is based on three studies within the Family Support Project (FAS-project). The first study focused on respite care service from three perspectives. The second study focused on families with children with brittle bones (osteogenesis imperfecta) and the third study focused on families with children with muscular diseases. Study two and three surveyed the families' opportunities to exert influence on and participate in the decision process. The aim of this dissertation is to highlight how families with children with disabilities experience daily life, what is working well and what is not working as well as desired. The aim is also to find out what areas the families experience as problematic and within what areas they need a better support and to demonstrate what can be done in the municipalities in order to facilitate for the families. For many years I have been working with projects concerning family support. The different projects have applied to families with children with disabilities and among other things to families with children with brittle bones and muscular di-seases. These diagnoses are mentioned as small and less known disability groups. The results from the studies show that many families have difficulties in receiving the support they need and demand, that they have difficulties to communicate with authorities and administrators and that the knowledge about different kinds of disabilities are lacking. This is one reason why these families have not received the understanding and support for their daily lifes as they should.