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Children born to women with intellectual disabilities: 5-year incidence in a Swedish county
Malmö högskola, Faculty of Health and Society (HS), Department of Health and Welfare Studies (HV).
Malmö högskola, Faculty of Health and Society (HS), Department of Health and Welfare Studies (HV).ORCID iD: 0000-0002-1224-3291
2011 (English)In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 55, no 11, p. 1078-1085Article in journal (Refereed) Published
Abstract [sv]

Incidensen som kalkylerades i denna studie indikerar att ca 2,12 barn per tusen födda barn föds av kvinnor med intellektuella funktionshinder. För Sverige som helhet indikerar detta en incidens av ca 225 barn som årligen föds av kvinnor med intellektuella funktionshinder. På basis av detta kan en prevalens av barn (0-18 år) födda av kvinnor med intellektuella funktionshinder uppskattas till ca 4 050. Sökord: Funktionshinder, familjer, mödrar med intellektuella funktionshinder, föräldraskap, prevalens.

Abstract [en]

Background: Families with parental intellectual disabilities are likely to need support in achieving a decent family life. In order to accurately plan for such support services, society needs data regarding the occurrence of those parents and their children. The aim of this study was to investigate the five-year incidence of children born to women with intellectual disabilities in a county in Sweden. Methods: Women born between 1975 and 1989 were identified from school registers for children and adolescents with intellectual disabilities in the county of Blekinge. The women’s personal identification numbers were, in 2010, linked and matched with the Swedish Medical Birth Register. Results: In total, 98 women with intellectual disabilities were identified. Nine of these had given birth to children; one woman to two children and eight women to one child each. The ten children were born between 2004 and 2008. Conclusion: The incidence rate calculated as a result of the present study indicates that approximately 2.12 per thousand children are born per year to women with intellectual disabilities. For the whole of Sweden that rate indicates an incidence of approximately 225 children each year. On the basis of this, the prevalence of children (aged 0-18 years) being born to women with intellectual disabilities is estimated at about 4,050.

Place, publisher, year, edition, pages
Blackwell Munksgaard, 2011. Vol. 55, no 11, p. 1078-1085
Keywords [en]
Disability, families, mothers with intellectual disabilities, parenthood, prevalence
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:mau:diva-14612DOI: 10.1111/j.1365-2788.2011.01441.xISI: 000297022900007PubMedID: 21726321Scopus ID: 2-s2.0-80054951064Local ID: 12606OAI: oai:DiVA.org:mau-14612DiVA, id: diva2:1418133
Available from: 2020-03-30 Created: 2020-03-30 Last updated: 2024-02-05Bibliographically approved
In thesis
1. Children in families where the mother has an intellectual or developmental disability: incidence, support and first person narratives
Open this publication in new window or tab >>Children in families where the mother has an intellectual or developmental disability: incidence, support and first person narratives
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis was to increase the knowledge about children born to mothers with an intellectual or developmental disability by investigating incidence (Study I), support at the stra tegic level (Study II), support at the family level (Study III), and experiences of having grown up with a mother with a developmental disability (Study IV). The first study investigated the 5-year incidence of children being born to mothers with an intellectua l disability in a Swedish county. Three types of registers were used, together with personal identification numbers. The resulting incidence rate, 2.12 children per 1,000 children indicates that there are currently approximately 4000 children (aged 0-18 years) that have been born to a mother with an intellectual disability in Sweden. Data for Studies II and III were collect ed by means of focus group interviews with 29 professionals supporting families with parental intellectual disability, and the data were analysed by means of content analysis. Study II described results on the strategic level of support; roles and activities of the professionals involved, identification of families in need, problems with identifying mothers with an intellectual disability, existing collaboration and dilemmas concerning legislative actions. The results indicated a rich web of support to these families from all kinds of welfare sectors, but further needs for building collaboration were identified, such as the need to coordinate education efforts. Study III described results on the family level of support: support practices, pedagogical strategies, and maintaining the child perspective. The results indicated the need for concrete training, the importance of involving the father/ partner, and the value of not losing the child perspective and of creating support practices with a clearer focus on the children. In Study IV, four women were interviewed about their experiences of growing up in a family with a mother who has a developmental disability. Narrative inquiry and content analysis were employed. The findings showed recollections of a vulnerable childhood filled with worries, fear, and anxiety, and with a strong feeling of responsibility. No effective support from the authorities was ever offered to the four informants, who dealt differently with their lives as adults with regard to their own family and children. The results of this thesis provide new knowledge about the complex situation of being a child in a family with maternal intellectual or developmental disability, and they may be used by staff in the welfare sectors in order to improve the visibility of these children and offer support adapted to the children's situation.

Place, publisher, year, edition, pages
Malmö University, Faculty of Health and Society, 2015. p. 96
Series
Malmö University Health and Society Dissertations, ISSN 1653-5383 ; 3
Keywords
Barn till föräldrar med funktionsnedsättning, Mödrar, Föräldrar med utvecklingsstörning
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:mau:diva-7348 (URN)17224 (Local ID)978-91-7104-585-0 (ISBN)978-91-7104-586-7 (ISBN)17224 (Archive number)17224 (OAI)
Note

Paper IV published in dissertation as manuscript with title “I needed to be a child” – Experiences of having grown up in a family where the mother has a developmental disability

Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2022-07-27Bibliographically approved

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Tengland, Per-Anders

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