Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development

Abstract

Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning.

Everyday Life Situations of School-Aged Children with Severe Disabilities: What are the Goals for the Future? An Exploratory Study

“…This suggests low expectations of each child's possiblities to express opinions and participate in an active manner [30,31]. Given that the same activities are likely to be of interest for children with SD as for other children [3], and that peer relationships are critical to promote any child's development [2], the SSN surrounding children with SD should promote the establishement of peer social interactions.…”

“…All seven had congenital injuries or brain injuries acquired in infancy, which affect mental functions. Secondary diagnoses of CP were reported for six of the children: two in four children with tetraplegia 3 and one in two children with diplegia 4 had dystonic features 5 , which affect movement functions. Five of the children also had a diagnosis of epilepsy.…”

“…Four of the seven children had moderate to severe difficulties in all four variables. In addition to physical impairments, 3 Tetraplegia is the most severe type of CP characterized by bilateral spasticity predominating in the upper limbs, almost always in association with severe mental subnormality and microcephaly 20. Aicardi J, Bax M. Cerebral Palsy, in Diseases of the Nervous System in Childhood, Aicardi J, Ed.…”

“…The ELS require more or less complex actions and affect the child's development [1,2]. Even though desires for involvement in ELS seem nearly the same for all children, children with disabilities are usually at greater risk of limited social involvement [3][4][5]. Their involvement may be affected by peer relationship difficulties causing problems mastering the social tasks of gaining entry into peer groups [6].…”

Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life

“…Despite the integration of siblings into family‐centered approaches in recent years, an aspect of the lives of siblings of children with CCN that is rarely addressed in the literature is their own perspectives on participating in everyday life activities. This is a concern considering participation in everyday life is essential to the healthy development and emotional well‐being of children (Axelsson et al, ), and young people affected by chronic illness are more likely to experience challenges to participation (Harding et al, ). Accordingly, if we hope to improve the lives and well‐being of brothers and sisters of children with CCN, there is the need to address and amplify the typically unheard voices of brothers and sisters of children with CCN about their perspectives and experiences of participation.…”