Krauss, M.W., Seltzer, M.M., and Jacobson, H.T. (2005). Adults with autism living at home of in non-family settings: positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111-124.
- what are the positives and negatives to having an adult with autism live at home versus a residential placement?
- family and non-family settings
- maternal involvement
- impressions of quality of life
- family life-cycle theory - young adulthood is the launching stage
- often put off
- family preferences
- lack of alternatives
- 60% of adults with intellectual disabilities live with their parents in the US
- part of a large longitudinal study (other parts described in other reviews)
- adult services are not mandatory - must advocate to secure services
- launching period - stressful
- dependency
- no autonomy
- vulnerability
- behavioral concerns
- social communication
- family related
- educational programming
- professional relationships
- independence and futurs
- will the system be able to meet their needs?
- parenting responsibilities are much greater than anticipated
- very little study of this phase in the life cycle
- parents - major role
- stay involved when chidlren are out of the home
- mothers especially involved
- advantages of out of home placement (Baker & Blacher 2002)
- better services, more peace of mind
- disadvantages - not able to be there
- small samples limit the generalizability of the findings
- most adolescents live with families - as they get older they tend to move out (1/3 - less than those with other IDs)
- current study research questions
- positive and negative aspects
- contact with child
- changes in mother's lives
- participants - from a larger longitudinal study
- 133 families
- 84 lived in non-family setting
- 49 lived at home
- average age of child = 31.9 years
- procedures
- mothers filled out a questionnairre
- qualitiative questions and quantitiative questions
- in-home interviews? Never discussed after this
- qualitative - what are the positives and negatives of the living situation
- rated several questions related to quality of life on a 1-7 scale
- how often the mothers had contact with their child (if out of the house)
- satisfaction was also rated
- analysis
- transcribed and coded for themes (tradition?)
- family benefits/negatives
- child benefits/negatives
- parent benefits/negatives
- checked for gender differences but did not seem to report - did I miss this somewhere?
- results
- co-residing mothers
- most of the children had never lived outside the home
- 46% family benefits, 34.7% child benefits, 19% mother benefits
- enhanced family quality
- love shared
- helps out around the house
- changed for the better
- getting good care
- secure at home
- interactions with the family
- happy and prefers the situation (child)
- mother benefits
- negatives
- problems for the family
- dealing with problem behavior
- limitations on activities and stress
- sibling difficulties
- lack of challenges at home
- lack of services for the child
- stress of caregiving/living alone
- parental isolation and lack of freedom
- respite care
- concerns about the future
- parents who live apart from their child
- average age 26.7 years
- 73% in residential programs
- benefits
- calmer family life
- better relationship between parent and child
- marital relationship
- siblings
- don't have to deal with behavioral issues or stresses
- learn new skills
- increased confidence and independence
- more structured life
- better programs and activities
- more age appropriate
- parents have more free time
- more peace of mind
- can pursue full time employment
- negatives
- staff are not well trained
- worry about care and supervision
- lack of individuality and programs
- not enough activities and challenges
- staff turnover
- exploitation of the child
- less well groomed
- not as close with the family
- child was lonliet
- miss their children
- guilt about living away
- distance from children
- not knowing the details of their child
- management of problem behavior
- still very much the caregiver
- some regretted that they were not the caregiver
- people who live with their children rate the quality slightly more negatively than those who live apart (but statitically significant)
- parental contact with children living apart
- half visit at least weekly or several times a week
- high levels of involvement
- talk with the children on a regular basis (for verbal kids)
- most talked at least weekly with program staff
- Changes in the family life
- more free time
- less fatigue
- worries more about the future since they moved out
- no change in lonliness, financial situation, emotional involvement, and feeling needed
- mothers who worried more had less favorable appraisals of how the situation was working out
- greater feelings of being needed had less favorable appraisals of the situation
- Discussion
- many different impacts - complicated
- this study - focused on the impact of ASD - understudied
- residential status makes a difference for the entire family according to mothers
- living away from home
- postive benefits for the child, less for the family
- at home - more benefits for the family, less for the child
- living at home makes family more enjoyable - stressors are dealing with problem behavior
- mother seems to benefit less than the child or the family as whole
- expressed tradtiionallly maternal feelings
- seems to be some advantage to living apart
- however, the issue is much more complex than that
- lots of contact between the child and the families
- caregiving no matter where the child lives
- less common for children with ASD to live at home
- IMPORTANT TO TAKE A LIFESPAN PERSPECTIVE
- limitations
- qualtitative data - not done as a face-to-face interview
- responses only from the mother - other family members might have answered differently
- still a good study
Comments (0)
You don't have permission to comment on this page.