Ett liv att leva : Om familjer, funktionshinder och vardagens villkor
Sammanfattning: The thesis deals with everyday life in families where a child is born with an impairment and also, to a certain extent, with the lives of adults suffering from the same disability. The parents' way of managing life with a disabled child is of great importance for the child" s perception of itself, as well as its future development. It is therefore interesting to focus on the whole family when seeking to understand the life situation of those with a disability. The aim of the study is to clarify what happens in a family when a child is born with an impairment.A qualitative analysis was carried out, based on interviews with 20 children, teenagers and adults with myelomeningocele, and their parents; and also on separate interviews with 12 siblings of the children with myelomeningocele. The interviews were semistructured and conducted with the aid of guidelines on many areas in life; for example relations to health care and authorities; ideas about the disability and the experience of the biographical disruption brought about by the birth of a disabled child.The results of the study is discussed in terms of similarity and dissimilarity; and shows how the families live in a world, or reality, which is similar to the world every person lives in, and at the same time live in another world of dissimilarity because of the disability. The parents, and in some respects the children or teenagers, develop various strategies in order to balance these two worlds and lead a functional everyday life, which is also the case regarding the adults with myelomeningocele. The results of the study also indicate central areas involving problems for these families and the thesis ends with some advice on what can be done to make life easier for children, teenagers and adults with myelomeningocele, as well as their parents.
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