Ett barn med Downs syndrom föds : Föräldrarnas upplevelse av vården ur ett familjecentrerat perspektiv

Detta är en Kandidat-uppsats från Uppsala universitet/Institutionen för folkhälso- och vårdvetenskap; Uppsala universitet/Institutionen för folkhälso- och vårdvetenskap

Sammanfattning: Background: Down syndrome is the most common chromosomal abnormality in Sweden. Around 120 to 140 children with Down syndrome are born annually in Sweden. There is a lack of studies that examine how parents of children with Down syndrome experience the interactions with healthcare personnel.   Aim: The aim of this study was to illustrate how parents of children with Down syndrome experienced the encounters with healthcare personnel during the child’s first year, based on a family centered perspective.   Method: A literature study was done using 13 original articles from different countries. They were chosen through Pubmed. These were reviewed and processed into four categories. Joyce Travelbee’s nursing theory, as well as family centered care was used as frame of reference.   Result: A majority of the families in this study described negative experiences of interactions with healthcare personnel. Families experienced that they did not receive adequate emotional support. They lacked information about Down syndrome and the information they received was described as being too negative and unbalanced. Parents also described a lack of contact information to support groups and other institutions in the society. They also experienced that the health care did not notice their children's potential nor had the knowledge about the conditions for people with Down syndrome in the society.   Conclusion: Parents mostly have a negative experience of the health care when theyhave a child with Down syndrome. The healthcare primarily has to see to the new born child, congratulate the parents to a new member of the family before focus on the diagnosis. Thereafter, the health care should give a balanced information in an early stage regarding the family’s and the baby’s needs and provide the family with emotional support. The nurse has an important part to fill from a family centered perspective.

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