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Everyday life when growing up with a mother with an intellectual or developmental disability : Four retrospective life-stories

Weiber, Ingrid LU ; Tengland, Per Anders LU ; Berglund, Johan Sanmartin LU and Eklund, Mona LU (2018) In Scandinavian Journal of Occupational Therapy
Abstract

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... (More)

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.

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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
activity, Childhood experiences, developmental disability, intellectual disability, maternal, qualitative interviews, support
in
Scandinavian Journal of Occupational Therapy
publisher
Taylor & Francis
external identifiers
  • scopus:85060351074
ISSN
1103-8128
DOI
10.1080/11038128.2018.1554087
language
English
LU publication?
yes
id
d28f73bf-5210-4ef3-ace2-346329a58dd6
date added to LUP
2019-02-04 12:45:29
date last changed
2019-02-05 03:00:02
@article{d28f73bf-5210-4ef3-ace2-346329a58dd6,
  abstract     = {<p>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.</p>},
  author       = {Weiber, Ingrid and Tengland, Per Anders and Berglund, Johan Sanmartin and Eklund, Mona},
  issn         = {1103-8128},
  keyword      = {activity,Childhood experiences,developmental disability,intellectual disability,maternal,qualitative interviews,support},
  language     = {eng},
  month        = {11},
  publisher    = {Taylor & Francis},
  series       = {Scandinavian Journal of Occupational Therapy},
  title        = {Everyday life when growing up with a mother with an intellectual or developmental disability : Four retrospective life-stories},
  url          = {http://dx.doi.org/10.1080/11038128.2018.1554087},
  year         = {2018},
}