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Struggling for motherhood with an intellectual disability: a qualitative study of women's experiences in Sweden
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
2013 (English)In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 29, no 6, 698-704 p.Article in journal (Refereed) Published
Abstract [en]

Objective

to gain a deeper understanding of the experiences of childbearing in women with intellectual disabililty (ID).

Design/setting

ten women with ID, who had given birth within seven years, were interviewed twice and data were analysed with content analysis.

Findings

the overarching theme was: Struggling for motherhood with an ID. The significance of having an intellectual disability became evident when the women encountered mixed reactions from partners and relatives, who sometimes suggested an induced abortion. The women disclosed their diagnosis if they believed it was beneficial for them. Throughout the process the women also felt anxious and distressed about the custody of the child. Women experienced the pregnancy as a physical and psychological transition. It was mostly a happy and responsible life event, and the women were aware of physical signs in their bodies and contact with the unborn child. Parent education was considered important but not adequately adapted to their needs. The women described the delivery as hard and painful work, sometimes difficult to understand and they had different strategies to handle the pain and strain of labour. The child was welcomed with warmth and curiosity by the women, who cared for and breast fed the child even if the hospital environment could be confusing and continued custody not taken for granted.

Conclusions

women with ID struggle for motherhood and fear losing custody of the child. Professionals need to identify and support these women, who may not always disclose their diagnosis. Since pregnancy, delivery and the transition into motherhood can be difficult to understand, information and support should be better tailored to their needs.

Place, publisher, year, edition, pages
2013. Vol. 29, no 6, 698-704 p.
National Category
Clinical Medicine
Identifiers
URN: urn:nbn:se:uu:diva-183017DOI: 10.1016/j.midw.2012.06.014ISI: 000318904400020OAI: oai:DiVA.org:uu-183017DiVA: diva2:561703
Available from: 2012-10-20 Created: 2012-10-20 Last updated: 2017-12-07Bibliographically approved
In thesis
1. Pregnancy, Childbirth and Midwifery Care among Women with Intellectual Disability in Sweden: Epidemiological and Descriptive Studies
Open this publication in new window or tab >>Pregnancy, Childbirth and Midwifery Care among Women with Intellectual Disability in Sweden: Epidemiological and Descriptive Studies
2012 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to investigate pregnancy and childbirth in women with intellectual disability (ID), in Sweden, the health of their newborns and midwifery care for these women. Two register studies and two descriptive studies are included. Pregnancy and birth outcomes as well as data on the newborns’ health were examined by linking data from the National Patient Register and the Medical Birth Register (I-II). The women’s experience of pregnancy and delivery was investigated with repeated interviews (III). Midwives’ knowledge of, experience of and attitudes towards pregnancy and childbirth in women with ID were evaluated with questionnaires (IV). Mothers with ID were more often teenagers, smoked more during pregnancy and had more Caesarean Sections. Their children had a higher proportion of pre-term births, were small-for-gestational-age, stillborn or died in the perinatal period. The women with ID struggled to attain motherhood and feared to lose custody of the child. The pregnancy was seen as a happy event, even though relatives did not always approve. Parent education was considered important, but not adequately adapted to their needs. The birth process was overwhelming and difficult to understand, but the child was welcomed with warm feelings, and breastfeeding was natural. Midwives stated it was different to care for women with ID and requested additional knowledge. The majority of midwives affirmed that women with ID could not manage the mother role satisfactorily, and one-third expressed that women with ID should refrain from having children. A majority of the midwives considered that the children should grow up with the parents with support from family and society, but one out of five stated that the children should grow up in foster care.

Conclusion: Women with ID and their children should be considered as risk groups in pregnancy and childbirth. Professionals in maternity services need to elucidate their knowledge and skills for counselling and supporting this particular group of pregnant women in pre-, intra- and post-partum care.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2012. 61 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 832
Keyword
pregnancy, delivery, women, intellectual disability, newborn health, experience, knowledge, attitudes, education
National Category
Clinical Medicine
Research subject
Obstetrics and Gynaecology
Identifiers
urn:nbn:se:uu:diva-183388 (URN)978-91-554-8515-3 (ISBN)
Public defence
2012-12-07, Auditorium Minus, Akademigatan 3, Uppsala, 09:15 (Swedish)
Opponent
Supervisors
Available from: 2012-11-16 Created: 2012-10-25 Last updated: 2013-01-23

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Höglund, BeritLarsson, Margareta

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