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The Characteristics of Local Support Systems, and the Roles of Professionals, in Supporting Families where a Mother has an Intellectual Disability
Malmö högskola, Faculty of Health and Society (HS). Department of Health, Faculty of Health Sciences, Blekinge Institute of Technology, Karlskrona, Sweden.
Department of Health Sciences, Lund University, Lund, Sweden.
Malmö högskola, Faculty of Health and Society (HS).ORCID iD: 0000-0002-1224-3291
2016 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 29, no 3, p. 197-210Article in journal (Refereed) Published
Abstract [en]

BackgroundThere might be a need for support for families where the mother has an intellectual disability, in order to counteract the effects of potential parental inadequacy and other detrimental aspects of the family situation. The purpose of this study was to describe how professionals characterized such support and the collaboration required. Materials and methodsFocus group interviews involving 29 professionals were conducted and analysed using content analysis ResultsFive themes were identified: The roles and activities of the professionals involved; ways in which needs of support are identified; problems in identifying mothers with an intellectual disability; how professionals coordinate their support and work together; and the dilemma concerning legislative actions ConclusionsBy identifying both fruitful and problematic aspects of professional support, the findings may be used to enhance future support. More efficient chains of information and improved inter-sector collaboration between professions may further enhance the support practices

Place, publisher, year, edition, pages
Blackwell Munksgaard, 2016. Vol. 29, no 3, p. 197-210
Keywords [en]
collaboration, disability, family, legislative actions, structure of support
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:mau:diva-5055DOI: 10.1111/jar.12169ISI: 000374091800001PubMedID: 25754531Scopus ID: 2-s2.0-84924201509Local ID: 23037OAI: oai:DiVA.org:mau-5055DiVA, id: diva2:1401890
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-06-17Bibliographically 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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