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Stability and change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities
Jönköping University, School of Health and Welfare, HHJ. CHILD. Mälardalens Högskola.
Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.ORCID iD: 0000-0001-9597-039X
2015 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 28, no 2, 133-144 p.Article in journal (Refereed) Published
Abstract [en]

Background

Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD.

Materials and methods

Eight families participated over two years in eco-cultural family interviews and social networks interviews collected at home visits. Data were analyzed descriptively and by manifest contents analysis.

Results

Results showed variations in sustainability of daily routines over time across families. The sustainability was linked to fathers' involvement, couples' connectedness and emotional support. Stability and change of social networks were characterized by low overlap between the child and family networks, the children's communicative dependency and low density of able communication partners.

Conclusions

The results indicate that patterns of stability and change were linked both to family resources and child characteristics.

Place, publisher, year, edition, pages
2015. Vol. 28, no 2, 133-144 p.
Keyword [en]
accommodations; children with profound intellectual and multiple disabilities; daily routines; families; social networks; sustainability
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hj:diva-22862DOI: 10.1111/jar.12111ISI: 000352800100006PubMedID: 24915837Scopus ID: 2-s2.0-84923000906OAI: oai:DiVA.org:hj-22862DiVA: diva2:681277
Available from: 2013-12-19 Created: 2013-12-19 Last updated: 2016-03-03Bibliographically approved

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CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf