Experiences of mothers of children with profound intellectual and multiple disabilities in the Czech Republic

Abstract

Background: The objective of this study is to explore experiences of Czech mothers caring for children with profound intellectual and multiple disabilities.Methods: Semistructured interviews combined with biographical narration of mothers of children with profound intellectual and multiple disabilities and a short questionnaire for demographic data were used for data collection. Data analyses were carried out according to Van Manen's approach, including defining the main themes and description of the lived experiences of mothers. Findings:The dominant themes that emerged from the interviews were (1) losses and limits, (2) increased demands and exhaustion, (3) worries, (4) challenges connected to help and support, (5) transformation, ( 6) pleasures with contentment of the child and a small development and (7) functional support. Conclusions:The findings demonstrate that mothers of children with profound intellectual and multiple disabilities are at risk of facing many kinds of life difficulties, but the children have also positive impact on the mothers' lives. Relevant professionals and policy makers should be aware of the needs and challenges experienced by this vulnerable population.

Experience of having a sibling with autism spectrum disorder: a systematic review protocol

“…However, they may experience a huge internal crisis caused by coping with the different demands of their current life. Marginalization and discrimination are often part of siblings’ experience, including from professional services as well as broader society 16,17 . In addition, most teen and adult neurotypical siblings report that they are aware that they will become the primary caregiver of a sibling with ASD when their parents are unable to fill this role 18 …”

“…Marginalization and discrimination are often part of siblings' experience, including from professional services as well as broader society. 16,17 In addition, most teen and adult neurotypical siblings report that they are aware that they will become the primary caregiver of a sibling with ASD when their parents are unable to fill this role. 18 There may be other experiences of siblings of individuals with ASD that may be further influenced by other topics.…”