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Everyday life when growing up with a mother with an intellectual or developmental disability: Four retrospective life-stories.
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Department of Health, Blekinge Institute of Technology, Karlskrona, Sweden.
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-1224-3291
Department of Health, Blekinge Institute of Technology, Karlskrona, Sweden.
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Lund University, Lund, Sweden.
2020 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 27, no 6, p. 418-430Article in journal (Refereed) Published
Abstract [en]

Background: The voices of those who have grown up in a family with maternal intellectual or developmental disability (IDD) are valuable for gaining an understanding of their situation, which is essential in order to be able to support these families and avoid potentially detrimental situations.

Aim: The study aim was to describe the experience of having grown up in a family where the mother has an IDD, with a focus on everyday life and perceived health consequences in adult life.

Method: A qualitative method with retrospective narrative interviews and narrative content analysis was chosen. In-depth interviews were performed with four women who had experiences of a childhood with maternal IDD.

Findings: Four themes emerged: Living under adverse circumstances; Dealing with one’s everyday life situation; Receiving insufficient support and wishing for more; and The echo from childhood into adult life. The findings revealed a distressing childhood, characterized by neglect, abuse, anxiety, and overburdening responsibilities, and also endeavors to keep the family situation a secret, while at the same time wanting the adult world to react.

Discussion: The findings can hopefully stimulate occupational therapists and other professionals to more effectively identify the situation of these children and provide support to prevent adverse future health conditions and poor well-being.

Place, publisher, year, edition, pages
Taylor & Francis, 2020. Vol. 27, no 6, p. 418-430
Keywords [en]
Childhood experiences, activity, developmental disability, intellectual disability, maternal, qualitative interviews, support
National Category
Occupational Therapy
Identifiers
URN: urn:nbn:se:mau:diva-18050DOI: 10.1080/11038128.2018.1554087ISI: 000555097700003PubMedID: 30661438Scopus ID: 2-s2.0-85060351074OAI: oai:DiVA.org:mau-18050DiVA, id: diva2:1458997
Available from: 2020-08-18 Created: 2020-08-18 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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