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Pregnancy, Childbirth and Midwifery Care among Women with Intellectual Disability in Sweden: Epidemiological and Descriptive Studies
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
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 [en]
pregnancy, delivery, women, intellectual disability, newborn health, experience, knowledge, attitudes, education
National Category
Clinical Medicine
Research subject
Obstetrics and Gynaecology
Identifiers
URN: urn:nbn:se:uu:diva-183388ISBN: 978-91-554-8515-3 (print)OAI: oai:DiVA.org:uu-183388DiVA: diva2:562564
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
List of papers
1. Pregnancy and birth outcomes of women with intellectual disability in Sweden: a national register study between 1999 and 2007
Open this publication in new window or tab >>Pregnancy and birth outcomes of women with intellectual disability in Sweden: a national register study between 1999 and 2007
2012 (English)In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 91, no 12, 1381-1387 p.Article in journal (Refereed) Published
Abstract [en]

Objective.

To investigate the antenatal health and demographic factors as well as pregnancy and delivery outcomes in women with intellectual disability (ID) in Sweden.

Design.

A population-based register study.

Setting.

The National Patient Register (NPR) linked to the Medical Birth Register (MBR).

Sample.

Women with ID classified as International Classification of Diseases (ICD) 8–10 who gave birth in 1999–2007 (n = 326), identified from the NPR linked to the MBR, were compared with all first-time, singleton mothers without ID or any other psychiatric diagnoses during this period in Sweden (n = 340 624).

Methods.

Population-based data were extracted from the NPR and the MBR.

Main outcome measures.

Health and socio-demography at first antenatal visit, mode of delivery, pain relief during labor, preterm birth and discharge from hospital.

Results.

A higher proportion of women with ID were teenagers (18.4 vs. 3.3%), obese (20.1 vs. 8.6%) and single (36.6 vs. 6.2%) compared with women without ID, and women with ID smoked more often (27.9 vs. 7.9%). Women with ID had more often a preterm birth (12.2 vs. 6.1%), a cesarean section (CS) (24.5 vs. 17.7%) and used less nitrous oxide as pain relief during labor (59.5 vs. 75.8%). Women with ID had a higher risk for preterm birth [odds ratio (OR) 1.68], CS (OR1.55), non-use of nitrous oxide (OR 1.89) and discharge from hospital to a place other than home (OR 2.24).

Conclusion.

Pregnant women with ID should be considered a risk group suggesting that better tailored pre- and intrapartum care and support are needed for these women.

National Category
Clinical Medicine
Research subject
Obstetrics and Gynaecology
Identifiers
urn:nbn:se:uu:diva-183011 (URN)10.1111/j.1600-0412.2012.01509.x (DOI)000312032700005 ()
Projects
Berit Höglund
Available from: 2012-10-20 Created: 2012-10-20 Last updated: 2017-12-07Bibliographically approved
2. Newborns of mothers with intellectual disability have a higher risk of perinatal death and being small-for-gestational age
Open this publication in new window or tab >>Newborns of mothers with intellectual disability have a higher risk of perinatal death and being small-for-gestational age
2012 (English)In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 91, no 12, 1409-1414 p.Article in journal (Refereed) Published
Abstract [en]

Objective.

To study mode of birth, perinatal health and death in children born to mothers with intellectual disability (ID) in Sweden.

Design.

Population based register study.

Setting.

National registers; the National Patient Register linked to the Medical Birth Register.

Sample.

Children of first-time mothers with ID (n = 326) (classified in the ICD 8–10) were identified and compared to 340 624 children of first-time mothers without ID or any other psychiatric diagnosis during 1999 and 2007.

Methods.

Population-based data were extracted from the National Patient Register and the Medical Birth Register.

Main Outcome Measures.

Mode of birth, preterm birth, small-for-gestational age, Apgar score, stillbirth and perinatal death.

Results.

Children born to mothers with ID were more often stillborn (1.2% vs. 0.3%) or died perinatally (1.8% vs. 0.4%) than children born to mothers without ID. They had a higher proportion of cesarean section birth (24.5% vs. 17.7%), preterm birth (12.2% vs. 6.1%), were small-for-gestational age (8.4% vs. 3.1%) and had lower Apgar scores <7 points at 5 minutes (3.7% vs 1.5%), compared to children born to mother without ID. Logistic regression adjusted for maternal characteristics confirmed an increased risk of small-for-gestational age (odds ratio 2.25), stillbirth (odds ratio 4.53) and perinatal death (odds ratio 4.25) in children born to mothers with ID.

Conclusions.

Unborn and newborn children of mothers with ID should be considered a risk group, and their mothers may need better individual-based care and support.

National Category
Clinical Medicine
Identifiers
urn:nbn:se:uu:diva-183015 (URN)10.1111/j.1600-0412.2012.01537.x (DOI)000312032700009 ()
Available from: 2012-10-20 Created: 2012-10-20 Last updated: 2017-12-07Bibliographically approved
3. Struggling for motherhood with an intellectual disability: a qualitative study of women's experiences in Sweden
Open this publication in new window or tab >>Struggling for motherhood with an intellectual disability: a qualitative study of women's experiences in Sweden
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.

National Category
Clinical Medicine
Identifiers
urn:nbn:se:uu:diva-183017 (URN)10.1016/j.midw.2012.06.014 (DOI)000318904400020 ()
Available from: 2012-10-20 Created: 2012-10-20 Last updated: 2017-12-07Bibliographically approved
4. Midwives’ knowledge of, attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: a cross-sectional study in Sweden
Open this publication in new window or tab >>Midwives’ knowledge of, attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: a cross-sectional study in Sweden
2013 (English)In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 29, no 8, 950-955 p.Article in journal (Refereed) Published
Abstract [en]

Objective: to investigate midwives' knowledge of, attitudes towards andexperiences of caring for women with intellectual disability (ID) during pregnancy andchildbirth. Design/setting: a cross-sectional study among six hundred midwives working at antenatal care and labour wards in Sweden. Results: more than four out of five (81.5%) midwives had experience of caring for womenwith ID. Almost all midwives (97.1%) reported that caring for women with ID is different fromcaring for women without ID. Almost one-half (47.3%) had not received any education aboutpregnancy and delivery of women with ID, and a majority of the midwives (95.4%) requested evidence-based knowledge of women with ID in relation to childbirth. High proportion (69.7%) of the midwives were of the opinion that women with ID cannot satisfactorily manage the mother role, and more than one-third (35.7%) of the midwives considered that womenwith ID should not be pregnant and give birth at all. Most midwives partly/totally agreed that children of women with ID should grow up with their parents supported by the social authorities, but nearly one-fifth (19.1%) partly/totally agreed that the children should grow up in foster care. Conclusions: even if the majority of midwives had experience of caring for women with ID, they were uncertain about how to adapt and give advice and they needed more knowledgeabout these women. Some midwives had negative attitudes towards childbearing amongwomen with ID. Health Service providers should encourage midwives to update theirknowledge and provide supportive supervision in midwifery care for women with ID. 

National Category
Other Medical Sciences
Identifiers
urn:nbn:se:uu:diva-183018 (URN)10.1016/j.midw.2012.12.002 (DOI)000321431200019 ()
Projects
Berit Höglund
Available from: 2012-10-20 Created: 2012-10-20 Last updated: 2017-12-07Bibliographically approved

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