Wilder Jenny, Granlund Mats
BUSS School of Education, Culture and Communication, Mälardalen University, Vasteras, Sweden.
J Appl Res Intellect Disabil. 2015 Mar;28(2):133-44. doi: 10.1111/jar.12111. Epub 2014 Jun 10.
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.
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 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.
The results indicate that patterns of stability and change were linked both to family resources and child characteristics.
患有严重智力和多重残疾（PIMD）的儿童从出生起就需要家庭提供大量支持。本研究采用探索性和定性研究设计，调查瑞典患有PIMD儿童家庭日常生活和社交网络可持续性的稳定性和变化。
八个家庭在两年时间里参与了在家访中收集的生态文化家庭访谈和社交网络访谈。对数据进行了描述性分析和显性内容分析。
结果显示，不同家庭的日常生活可持续性随时间存在差异。可持续性与父亲的参与度、夫妻关系和情感支持有关。社交网络的稳定性和变化表现为儿童与家庭网络之间的重叠度低、儿童的沟通依赖性以及能够沟通的伙伴密度低。
结果表明，稳定性和变化模式与家庭资源和儿童特征都有关联。
