Jane Brodin & Inger Bernehäll Claesson

FAS

The aim of the project is to study what kind of support families of children and adolescents with disabilities need and what support they receive from society. Families of children with severe disabilities have according to legislation (LSS, 1994) the right to obtain different kind of support. An important area is respite care service and the following sub-studies have been conducted in the project, which started in 1995:

- Municipalities’ view on respite care service
- Parent’s conception and experience of respite care
- Respite caregivers/staff’s view on respite care service
- Design of a model for respite care based on the above mentioned studies.

More general aspects on family support are illuminated in the following studies:

- The situation for families with children with muscular diseases
- The situation for families with children with brittle bones (OI)

Publications

Bernehäll Claesson, I & Brodun, J. (2002). What families of children with brittle bones whant to tell. Child: Care, Health and Development.

Bernehäll Claesson, I., Paulin, S. & Brodin, J. (1999). Familjer med barn med osteogenisis imperfecta. Inflytande och medverkan i beslutsprocessen [Families of children with osteogenesis imperfecta. Influence and participation in decision making]. Stockholm: WRP International & The National Association for children and adolescents with motor disabilities (RBU).

Bernehäll Claesson, I. & Paulin, S. (1999) Vuxna med OI och Muskelsjukdomar och samhällets stöd [Adults with brittle bones and muscular diseases]. FamiljeStödsprojektet. Stockholm: WRP International & RBU

Brodin, J. (1995). Avlösarservice som stöd till familjer med barn med funktionsned-sättningar. En enkätstudie i 245 kommuner. [Respite care services for families with children with disabilities]. Report No. 11, Stockholm Institute of Education: Department of Special Education.

Brodin, J. (1995). Respite Service as Support for Families with Children with Disabilities — A Swedish Perspective. Föredrag vid konferensen "Rendezvous on Respite — a global conference on short-term care", 6-8 mars, 1995, Thunder Bay, Canada.

Brodin, J. (1995). Avlösarservice som en lagstadgad rättighet. Ett svenskt perspektiv på famljestöd [Respite care service as a legal right. A Swedish perspective on family support]. Fokus på Familien, 4, 201-209.

Brodin, J. (1995). Municipalities view on respite care service for families in Sweden. A comparision between two studies . European Journal of Special Needs Edcuation, 11(3), 330-336.

Brodin, J. (1997). Parents’ need for respite care support. In proceedings from the international conference Human Rights for Persons with Mental Handicaps, Prague, Check Republic, 7-12 September, 85-88.

Brodin, J. & Claesson, I. (1998) The third wheel — respite caregiver by profession. European Journal of Special Needs Education, 13 (3), 238-242.

Brodin, J. Claesson, I. Paulin, S. (1998). FamiljeStödsprojektet. En modell för avlösarservice [The Family Support Project. A model for respite care]. Stockholm: WRP International & Stockholm Institute of Education.

Brodin, J., Claesson, I. & Paulin, S. (1998). A new design for respite care in Sweden. Rendezvous, 4, November 1998, 2.

Brodin, J. & Paulin, S. (1997). Parents`view of respite care service for families with children with disabilities in Sweden. European Journal of Special Needs Education 12 (3), 197-208
Claesson, I. (1996). Avlösarservice sedd ur avlösarens perspektiv [ Respite vcare from caregiver`s perspective]. Report 18, Teknik, Kommunikation, Handikapp. Stockholm Institute of Education: Department of special education.

Claesson, I. (1998). Respite care service from a staff perspective. Ren dezvous 4, June, 9

Claesson, I. & Paulin, S. (1997). The Family Support projekt (FAS). Rendezvous, 2, January, 1997, 6-7

Lärka Paulin, S., Bernehäll Claesson, I. & Brodin, J. (2000). Familjer med barn med muskelsjukdomar. Inflytande och medverkan i beslutsprocessen. [Families of children with muscular diseases. Influence and participation in decision making]. Stockholm: WRP International & The National Association for children and adolescents with motor disabilities (RBU).

Lärka Paulin, S., Bernehäll Claesson, I. & Brodin, J. (2001). Hur ser stödet till familjer med barn med muskelsjukdomar ut? [How is support to families of children with muscular diseases worked out?]. Socialmedicinsk tidskrift 78(2), 161-171