Skip to main content

Lund University Publications

LUND UNIVERSITY LIBRARIES

Familjers och vårdpersonals erfareheter av barn och vuxna med autism. Families and staffs experiences of children and adults with autism.

Benderix, Ylva LU (2007)
Abstract
The aim of this dissertation was to gain knowledge about the experiences of siblings and parents of children with autism and learning difficulties, about what brought about the decision to apply for a place in a group home for their child and what it meant for the parents that their child had moved. A further aim was to gain knowledge about what it is like to work in a group home for children with autism as well as to investigate the work atmosphere in group homes for adults with autism.



The dissertation includes four studies: the first comprises interviews with parents (n = 10) before their children have moved as well as when their children have lived for two years in the group home, the second comprises interviews with... (More)
The aim of this dissertation was to gain knowledge about the experiences of siblings and parents of children with autism and learning difficulties, about what brought about the decision to apply for a place in a group home for their child and what it meant for the parents that their child had moved. A further aim was to gain knowledge about what it is like to work in a group home for children with autism as well as to investigate the work atmosphere in group homes for adults with autism.



The dissertation includes four studies: the first comprises interviews with parents (n = 10) before their children have moved as well as when their children have lived for two years in the group home, the second comprises interviews with siblings (n = 14), the third comprises interviews with staff (n = 10) who have worked with the five children in a newly opened group home after one year and after four years, the fourth comprises a study with a questionnaire focusing on the views of staff (n = 152) on the work atmosphere in 58 group homes for adults with autism.



The results from the interviews show that the parents had experienced grief over not having a child that was healthy and could develop normally. Before applying for a place in a group home they had been in a situation of great stress and were overloaded. Their children had very extreme deviant behaviour that they were not always able to control. This led to the families becoming increasingly isolated, the siblings being affected and several parents feeling that they were completely worn out. The results of the interviews carried out two years after their child had moved to a group home revealed that this gave the whole family feelings of release and relief. The parents also experienced an ethical dilemma consisting on the one hand of an ethical duty to care for their own child and on the other hand a feeling of relief when passing over responsibility to others.



The results from the interviews with the siblings before the children moved, show that these siblings took responsibility in a precocious way. The siblings were often exposed to frightening and deviant behaviour.This led to several siblings feeling anxious and insecure at home. Having a brother or sister with autism led to relationships with friends being affected negatively. The siblings chose not to bring friends home because of the child's occasionally violent and destructive behaviour.



When the staff had worked for one year in the group home it was seen that they were greatly involved in the children and their families. They had developed a very supportive work atmosphere among the staff but experienced stress that was triggered by violence. Focus group interviews with staff after four years of work revealed that four of the ten staff had left the job. Those who were still there, both the original and newly appointed staff desired more support and in-house training, particularly in coping with the then teenage children's violent behaviour. The staff who participated in the study of the work atmosphere in group homes for adults with autism described the atmosphere as being generally more creative and innovative than stagnating. There were two different types of group homes, those providing living accommodation only and those combining accommodation with daytime activities, the former were rated as having a better work atmosphere than the latter, which showed higher degree of conflict and lower degrees of motivation and challenge. (Less)
Abstract (Swedish)
Popular Abstract in Swedish
Avhandlingens syfte var att öka kunskapen om syskons och föräldrars erfarenheter av barn med autism och utvecklingsstörning, vad som ledde fram till beslutet att söka en plats i en gruppbostad för sitt barn och vad det innebar för föräldrar att deras barn flyttat. Avsikten var också att öka kunskapen om personalens erfarenheter av arbetet i en gruppbostad för barn med autism samt att undersöka arbetsklimatet i gruppbostäder för vuxna med autism. Avhandlingen omfattar fyra delstudier, där studie I innefattar intervjuer med föräldrar (n=10) innan deras barn flyttar, samt när deras barn bott två år i en gruppbostad. Studie II innefattar intervjuer med samtliga syskon (n=14). I studie III genomfördes... (More)
Popular Abstract in Swedish
Avhandlingens syfte var att öka kunskapen om syskons och föräldrars erfarenheter av barn med autism och utvecklingsstörning, vad som ledde fram till beslutet att söka en plats i en gruppbostad för sitt barn och vad det innebar för föräldrar att deras barn flyttat. Avsikten var också att öka kunskapen om personalens erfarenheter av arbetet i en gruppbostad för barn med autism samt att undersöka arbetsklimatet i gruppbostäder för vuxna med autism. Avhandlingen omfattar fyra delstudier, där studie I innefattar intervjuer med föräldrar (n=10) innan deras barn flyttar, samt när deras barn bott två år i en gruppbostad. Studie II innefattar intervjuer med samtliga syskon (n=14). I studie III genomfördes intervjuer med personalen (n=10) som arbetade med de fem barnen i den nyöppnade gruppbostaden. Intervjuerna genomfördes när personalen arbetat ett år och därefter när de arbetat fyra år i gruppbostaden. Studie IV är en enkätstudie som undersöker personalens (n=152) syn på arbetsklimatet i 58 gruppbostäder för vuxna med autism.

Resultaten visar att föräldrarna fortfarande upplevde sorg över att de inte fått ett barn som var friskt och normalt utvecklat. Innan de sökte en plats i en gruppbostad hade de under lång tid varit utsatta för psykisk stress. Deras barn hade beteendeavvikelser som de inte alltid kunde kontrollera. Familjerna hade isolerat sig alltmera, syskonen drabbades och flera föräldrar kände sig totalt utmattade. Två år efter att deras barn hade flyttat till gruppbostaden beskrev föräldrarna det som en slags befrielse för hela familjen. Föräldrarna upplevde dock starkt ett etiskt dilemma bestående av å ena sidan en etisk förpliktelse att vårda sitt eget barn och å andra sidan en lättnad över avlastningen när man lämnade över ansvaret till andra.

Resultaten från intervjuerna med syskonen visar att de tog stort ansvar på ett brådmoget sätt. De hade en väl utvecklad empati och uttryckte förståelse för barnet med autism. Syskonen blev utsatta för skrämmande beteende i form av självskador och våld mot familjemedlemmar som föräldrarna inte alltid kunde avvärja. Detta ledde till att syskon kände sig ängsliga och otrygga hemma. Att ha en bror eller syster med autism ledde också till att syskonen valde att inte ta hem kamrater på grund av barnets ibland våldsamma och destruktiva beteende.

När personalen hade arbetat ett år i gruppbostaden framkom att de hade ett mycket starkt engagemang i barnen och deras familjer. De hade också utvecklat ett stödjande arbetsklimat i arbetsgruppen. De upplevde dock stress som utlösts av våld, och saknade i samband med detta stöd från arbetsledningen. I fokusgruppsintervjuer genomförda när personalen arbetat fyra år framkom att fyra av de tio medarbetarna slutat, främst på grund av missnöje med bristfälligt stöd och avsaknad av utbildningsmöjligheter. De som var kvar, både gamla och nyanställda önskade också mera stöd i att hantera de nu tonåriga barnens våldsamma beteende. Personalen som deltog i studien om arbetsklimatet i gruppbostäder för vuxna personer med autism beskrev arbetsklimatet generellt mera som kreativt och innovativt än som stagnerat. Det fanns två olika typer av verksamheter, enbart gruppbostad vilket skattades ha bättre arbetsklimat än gruppbostäder med daglig verksamhet vilket skattades ha sämre arbetsklimat med högre nivå av konflikter och lägre nivå av motivation och utmaning (Less)
Please use this url to cite or link to this publication:
author
supervisor
opponent
  • Prof. Alin-Åkerman, Britta, Lärarhögskolan, Stockholm
organization
publishing date
type
Thesis
publication status
published
subject
keywords
Ethical Dilemma, Autism, Parents, Sheltered Homes, Medicine (human and vertebrates), Sociology, Pediatri, Pediatrics, Sociologi, Medicin (människa och djur), Violence, Work Climate, Siblings
pages
150 pages
publisher
Department of Health Sciences, Lund University
defense location
Hörsal 1, Vårdvetenskapens hus, Baravägen 3, Lund
defense date
2007-02-02 09:11:00
ISBN
91-85559-76-8
language
Swedish
LU publication?
yes
additional info
Y Benderix, B Nordström and B Sivberg. 2006. Parents Experience of having a Child with Autism and Learning Disability Living in a Group Home. Autism, vol 10 pp 629-641.
Y Benderix and B Sivberg. 2006. Experiences of having a Brother or Sister with Autism and Mental Retardation. Journal of Pediatric Nursing, vol 9 (inpress)
Y Benderix, B Nordström and B Sivberg. 2006. Staff Members' Experience of Work in a Sheltered Home for Children with Autism. A case study. (submitted)
Y Benderix, B Nordström, P Nyberg and B Sivberg. 2006. Staff Members’ Views of the Working Climate in Sheltered Homes for Adults With Autism Spectrum Disorders. (manuscript)
The information about affiliations in this record was updated in December 2015. The record was previously connected to the following departments: Division of Nursing (Closed 2012) (013065000)
id
527a77ae-bbcd-4f37-86bb-3c4995301bb6 (old id 548030)
date added to LUP
2016-04-01 17:14:21
date last changed
2023-05-24 14:07:53
@phdthesis{527a77ae-bbcd-4f37-86bb-3c4995301bb6,
  abstract     = {{The aim of this dissertation was to gain knowledge about the experiences of siblings and parents of children with autism and learning difficulties, about what brought about the decision to apply for a place in a group home for their child and what it meant for the parents that their child had moved. A further aim was to gain knowledge about what it is like to work in a group home for children with autism as well as to investigate the work atmosphere in group homes for adults with autism.<br/><br>
<br/><br>
The dissertation includes four studies: the first comprises interviews with parents (n = 10) before their children have moved as well as when their children have lived for two years in the group home, the second comprises interviews with siblings (n = 14), the third comprises interviews with staff (n = 10) who have worked with the five children in a newly opened group home after one year and after four years, the fourth comprises a study with a questionnaire focusing on the views of staff (n = 152) on the work atmosphere in 58 group homes for adults with autism.<br/><br>
<br/><br>
The results from the interviews show that the parents had experienced grief over not having a child that was healthy and could develop normally. Before applying for a place in a group home they had been in a situation of great stress and were overloaded. Their children had very extreme deviant behaviour that they were not always able to control. This led to the families becoming increasingly isolated, the siblings being affected and several parents feeling that they were completely worn out. The results of the interviews carried out two years after their child had moved to a group home revealed that this gave the whole family feelings of release and relief. The parents also experienced an ethical dilemma consisting on the one hand of an ethical duty to care for their own child and on the other hand a feeling of relief when passing over responsibility to others.<br/><br>
<br/><br>
The results from the interviews with the siblings before the children moved, show that these siblings took responsibility in a precocious way. The siblings were often exposed to frightening and deviant behaviour.This led to several siblings feeling anxious and insecure at home. Having a brother or sister with autism led to relationships with friends being affected negatively. The siblings chose not to bring friends home because of the child's occasionally violent and destructive behaviour.<br/><br>
<br/><br>
When the staff had worked for one year in the group home it was seen that they were greatly involved in the children and their families. They had developed a very supportive work atmosphere among the staff but experienced stress that was triggered by violence. Focus group interviews with staff after four years of work revealed that four of the ten staff had left the job. Those who were still there, both the original and newly appointed staff desired more support and in-house training, particularly in coping with the then teenage children's violent behaviour. The staff who participated in the study of the work atmosphere in group homes for adults with autism described the atmosphere as being generally more creative and innovative than stagnating. There were two different types of group homes, those providing living accommodation only and those combining accommodation with daytime activities, the former were rated as having a better work atmosphere than the latter, which showed higher degree of conflict and lower degrees of motivation and challenge.}},
  author       = {{Benderix, Ylva}},
  isbn         = {{91-85559-76-8}},
  keywords     = {{Ethical Dilemma; Autism; Parents; Sheltered Homes; Medicine (human and vertebrates); Sociology; Pediatri; Pediatrics; Sociologi; Medicin (människa och djur); Violence; Work Climate; Siblings}},
  language     = {{swe}},
  publisher    = {{Department of Health Sciences, Lund University}},
  school       = {{Lund University}},
  title        = {{Familjers och vårdpersonals erfareheter av barn och vuxna med autism. Families and staffs experiences of children and adults with autism.}},
  url          = {{https://lup.lub.lu.se/search/files/4916889/1151836.pdf}},
  year         = {{2007}},
}