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Höglund, B. & Larsson, M. (2019). Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability: Focus group interviews among midwives in Sweden. JARID: Journal of applied research in intellectual disabilities, 32(6), 1558-1566
Open this publication in new window or tab >>Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability: Focus group interviews among midwives in Sweden
2019 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 32, no 6, p. 1558-1566Article in journal (Refereed) Published
Abstract [en]

Background

Few studies have explored ethical and legal issues in contraceptive counselling among women with intellectual disability (ID). This study aimed to gain a deeper understanding of these issues during midwifery contraceptive counselling.

Method

The present authors interviewed 19 midwives in five focus groups in Sweden 2016 – 2017 and analysed data with content analysis.

Results

The participants expressed that women with intellectual disability have equal right to relationships and sexual expressions, but feared exposure to sexual exploitation/abuse. They experienced ethical dilemmas related to principles of fairness and autonomy, but strived to provide assistance in spite of the women's cognitive impairment, presence of supporting persons and uncertainty of optimal counselling. Organizational support was insufficient.

Conclusions

The midwives experienced ambivalence, uncertainty and ethical dilemmas in their counselling. They were, however, aware of legal aspects and strived for the women's best interest, right to self‐determination and autonomous choices. The participants wanted better professional teamwork and support.

Keywords
contraceptive counselling, ethical dilemma, intellectual disability, legal aspects, midwife, woman
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-398816 (URN)10.1111/jar.12651 (DOI)000481245200001 ()31397044 (PubMedID)
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2019-12-12Bibliographically approved
Höglund, B., Radestad, I. & Hildingsson, I. (2019). Few women receive a specific explanation of a stillbirth - an online survey of women's perceptions and thoughts about the cause of their baby's death. BMC Pregnancy and Childbirth, 19, Article ID 139.
Open this publication in new window or tab >>Few women receive a specific explanation of a stillbirth - an online survey of women's perceptions and thoughts about the cause of their baby's death
2019 (English)In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 19, article id 139Article in journal (Refereed) Published
Abstract [en]

Background: In Sweden, three to four out of every 1000 pregnancies end in stillbirth each year. The aim of this study was to investigate whether women who had experienced stillbirth perceived that they had received an explanation of the death and whether they believed that healthcare professionals were responsible for the death of the baby.

Methods: An online survey of 356 women in Sweden who had experienced a stillbirth from January 2010 to April 2014. A mixed-methods approach with qualitative content analysis was used to examine the women's responses.

Results: Nearly half of the women (48.6%) reported that they had not received any explanation as to why their babies had died. Of the women who reported that they had received an explanation, 84 (23.6%) had a specific explanation, and 99 (27.8%) had a vague explanation. In total, 73 (30.0%) of the 243 women who answered the question Do you believe that healthcare personnel were responsible for the stillbirth? stated Yes. The women reported that the healthcare staff had not acknowledged their intuition that the pregnancy was proceeding poorly. Furthermore, they perceived that the staff met them with nonchalance and arrogance. Additionally, the midwife had ignored or normalised the symptoms that could indicate that their pregnancy was proceeding poorly. Some women added that neglect and avoidance among the healthcare staff could have led to a lack of monitoring, which could have been crucial for the outcome of the pregnancy.

Conclusions: Half of the women surveyed reported that they had not received an explanation of their baby's death, and more than one-fourth held healthcare professionals responsible for the death.

Place, publisher, year, edition, pages
BMC, 2019
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-383852 (URN)10.1186/s12884-019-2289-4 (DOI)000466991400001 ()31027483 (PubMedID)
Available from: 2019-05-24 Created: 2019-05-24 Last updated: 2019-05-24Bibliographically approved
Lundborg, L., Andersson, I.-M. & Höglund, B. (2019). Midwives' responsibility with normal birth in interprofessional teams: A Swedish interview study. Midwifery, 77, 95-100
Open this publication in new window or tab >>Midwives' responsibility with normal birth in interprofessional teams: A Swedish interview study
2019 (English)In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 77, p. 95-100Article in journal (Refereed) Published
Place, publisher, year, edition, pages
ELSEVIER SCI LTD, 2019
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-392118 (URN)10.1016/j.midw.2019.07.003 (DOI)000478779100013 ()31302363 (PubMedID)
Available from: 2019-09-06 Created: 2019-09-06 Last updated: 2019-09-06Bibliographically approved
Höglund, B. & Larsson, M. (2019). Midwives' work and attitudes towards contraceptive counselling and contraception among women with intellectual disability: focus group interviews in Sweden. European journal of contraception & reproductive health care, 24(1), 39-44
Open this publication in new window or tab >>Midwives' work and attitudes towards contraceptive counselling and contraception among women with intellectual disability: focus group interviews in Sweden
2019 (English)In: European journal of contraception & reproductive health care, ISSN 1362-5187, E-ISSN 1473-0782, Vol. 24, no 1, p. 39-44Article in journal (Refereed) Published
Abstract [en]

Objectives: Family planning counselling is an essential part of sexual and reproductive health care; however, health care professionals often fail to offer sexual and reproductive health services to women with intellectual disability (ID), based on a misconception of inactive sexuality. The aims of this study were to gain a deeper understanding of midwives' perceptions of sexual health and contraceptive use of women with ID, and of midwives' practices in providing contraceptive counselling to women with ID.

Methods: Five focus group interviews were conducted with 19 midwives at five antenatal/family planning clinics in central Sweden between December 2016 and February 2017.

Results: The findings are presented in a paradigm model comprising the following components: context, causal conditions for women with ID needing contraception, intervening conditions, action and interaction strategies based on the midwives' approach and performance during the consultation, and finally consequences. Midwives strived to enhance informed choice, whenever possible, and tried to maintain a neutral attitude during counselling. They wanted to provide the most suitable contraceptive method balanced against any risk of long-term use and possible side effects. Midwives raised the need for teamwork and inter-professional support to improve health care, security and access to other related services for women with ID.

Conclusions: Few women with ID request contraceptive counselling, which limits midwives' knowledge, experience and competence. Midwives, therefore, plan consultations carefully and strive to enable women with ID to make informed contraceptive choices. Increased teamwork could be a way to strengthen the role of midwives and thereby improve counselling.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD, 2019
Keywords
Contraceptive counselling, informed choice, intellectual disability, midwife, Sweden
National Category
Obstetrics, Gynecology and Reproductive Medicine Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:uu:diva-381202 (URN)10.1080/13625187.2018.1555640 (DOI)000461893000009 ()30633574 (PubMedID)
Available from: 2019-04-10 Created: 2019-04-10 Last updated: 2019-04-10Bibliographically approved
Janeslätt, G., Larsson, M. & Höglund, B. (2018). An intervention using the preparing for Parenting Toolkit: "Children - what does it involve?" and the Real-Care-Baby simulator among students with ID - a feasibility study. Paper presented at 5th International IASSIDD Europe Congress, 17–20 July, 2018, Athens, Greece.. JARID: Journal of applied research in intellectual disabilities, 31(4), 598-598
Open this publication in new window or tab >>An intervention using the preparing for Parenting Toolkit: "Children - what does it involve?" and the Real-Care-Baby simulator among students with ID - a feasibility study
2018 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 31, no 4, p. 598-598Article in journal, Meeting abstract (Other academic) Published
National Category
Other Social Sciences not elsewhere specified Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-366824 (URN)10.1111/jar.12488 (DOI)000435941500398 ()
Conference
5th International IASSIDD Europe Congress, 17–20 July, 2018, Athens, Greece.
Note

Meeting Abstract: 5451

Available from: 2018-11-26 Created: 2018-11-26 Last updated: 2019-10-11Bibliographically approved
Wickström, M., Höglund, B., Larsson, M. & Lundgren, M. (2017). Increased risk for mental illness, injuries, and violence in children born to mothers with intellectual disability: A register study in Sweden during 1999-2012. International Journal of Child Abuse & Neglect, 65, 124-131
Open this publication in new window or tab >>Increased risk for mental illness, injuries, and violence in children born to mothers with intellectual disability: A register study in Sweden during 1999-2012
2017 (English)In: International Journal of Child Abuse & Neglect, ISSN 0145-2134, E-ISSN 1873-7757, Vol. 65, p. 124-131Article in journal (Refereed) Published
Abstract [en]

Several studies have demonstrated that mothers with intellectual disability (ID) have a higher prevalence of mental health illness, lower socio-economic status, and a higher risk of alcohol and drug use compared to mothers without ID. The children of mothers with ID are over-represented in child protection and legal proceedings but are generally a less studied group than the mothers. The aim of this study was to investigate if children born to mothers with ID had an increased risk of being diagnosed with mental illness, injuries, and violence compared with children of mothers without ID. The study comprised a population based cohort of children born in Sweden between 1999 and 2005. Data were collected from the Medical Birth Register and linked with two other national registers; ICD-10 codes were used for medical diagnoses, including ID. The children were followed from birth to seven years of age. In total, 478,577 children were included, of whom 2749 were born to mothers with ID. Children of mothers with ID were at a greater risk of having mental health problems (adjusted odds ratio (OR)= 2.02; 95% confidence interval (CI) = 1.74-2.35) and ID (OR = 4.14; CI = 2.95-5.82) in early childhood. They had an increased risk for injuries due to falls (OR = 1.15; CI 1.04-1.27). The largest risk related to trauma was violence and child abuse (OR =3.11; CI = 1.89-5.12). In conclusion, children of mothers with ID had an increased risk for injuries, violence, and child abuse. We therefore suggest that parents with ID should receive evidence based support so that their children receive the best care and protection. (C) 2017 The Author(s). Published by Elsevier Ltd.

Place, publisher, year, edition, pages
PERGAMON-ELSEVIER SCIENCE LTD, 2017
Keywords
Intellectual disability, Mothers, Children, Health, Violence, Injuries
National Category
Public Health, Global Health, Social Medicine and Epidemiology Psychology
Identifiers
urn:nbn:se:uu:diva-321160 (URN)10.1016/j.chiabu.2017.01.003 (DOI)000398747500012 ()28135626 (PubMedID)
Available from: 2017-05-02 Created: 2017-05-02 Last updated: 2017-05-02Bibliographically approved
Höglund, B. & Larsson, M. (2015). Midwives' comprehension of care for women with intellectual disability during pregnancy and childbirth: An open-ended questionnaire study in Sweden. Women and Birth, 28(3), E57-E62
Open this publication in new window or tab >>Midwives' comprehension of care for women with intellectual disability during pregnancy and childbirth: An open-ended questionnaire study in Sweden
2015 (English)In: Women and Birth, ISSN 1871-5192, E-ISSN 1878-1799, Vol. 28, no 3, p. E57-E62Article in journal (Refereed) Published
Abstract [en]

Background: Few studies have investigated midwifery care for women with intellectual disability (ID). Aim: To gain a deeper understanding of midwives' comprehension of care for women with ID during pregnancy and childbirth. Methods: A cross-sectional study among 375 midwives at antenatal clinics and delivery wards in Sweden. Findings 2476 quotations were sorted into six categories: information; communication and approach; the role of the midwife; preparing for and performing interventions and examinations; methods and assessments; and organisation of care. The midwives affirmed that individual, clear and repeated information together with practical and emotional support was important for women with ID. The midwives planned the care as to strengthen the capacity of the women, open doors for the unborn child and reinforce the process of becoming a mother. Extra time could be needed. They tried to minimise interventions. The midwives felt a dual responsibility, to support the mother-child contact but also to assess and identify any deficits in the caring capacity of the mother and to involve other professionals if needed. Conclusions: The midwives described specially adapted organisation of care, models of information, practical education and emotional support to facilitate the transition to motherhood for women with ID. They have a dual role and responsibility in supporting the woman, while making sure the child is properly cared for. Healthcare services should offer a safe and trusted environment to enable such midwifery care. When foster care is planned, the society should inform and co-operate with midwives in the care of these women.

Keywords
Midwifery care, Comprehension, Pregnancy, Childbirth, Intellectual disability
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-264318 (URN)10.1016/j.wombi.2015.03.002 (DOI)000361003400005 ()25819511 (PubMedID)
Available from: 2015-10-15 Created: 2015-10-09 Last updated: 2017-12-01Bibliographically approved
Höglund, B. & Larsson, M. (2014). Professional and social support enhances maternal well-being in women with intellectual disability: a Swedish interview study. Midwifery, 30(11), 1118-1123
Open this publication in new window or tab >>Professional and social support enhances maternal well-being in women with intellectual disability: a Swedish interview study
2014 (English)In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 30, no 11, p. 1118-1123Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: to gain a deeper understanding of the experience of professional and social support during pregnancy and childbirth among women with intellectual disability (ID) in Sweden.

DESIGN/SETTING: an interview study among 10 women with ID, who had given birth within seven years. Two interviews were performed with each woman and data were analysed with qualitative content analysis.

FINDINGS: the overarching theme was: Professional and social support enhances maternal well-being in women with intellectual disability. The women described that the midwife and other caregivers contributed to their own insights and supported their mother-to-be process. They were mostly satisfied with the professional care and support during pregnancy and childbirth, based on aspects such as continuity, competence and professional experience of the midwives but also professional approach and working methods. Dissatisfaction and confusion occurred when questions were left unanswered or when the women׳s special needs were not taken into consideration. Family members, friends and colleagues could also have a supporting role and, together with the health staff, contribute to the well-being of the woman.

CONCLUSIONS: if professional support and care from midwives and other caregivers is adapted to the special needs of women with ID, it contributes to new insights, enhances well-being and supports the process of becoming a mother. Midwife-led continuity of care together with continuous social support should be offered to pregnant women with ID during pregnancy and childbirth.

National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-238166 (URN)10.1016/j.midw.2014.03.018 (DOI)000343814300004 ()24856795 (PubMedID)
Available from: 2014-12-10 Created: 2014-12-10 Last updated: 2017-12-05Bibliographically approved
Höglund, B., Lindgren, P. & Larsson, M. (2013). Midwives’ knowledge of, attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: a cross-sectional study in Sweden. Midwifery, 29(8), 950-955
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, p. 950-955Article 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
Höglund, B. & Larsson, M. (2013). Struggling for motherhood with an intellectual disability: a qualitative study of women's experiences in Sweden. Midwifery, 29(6), 698-704
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, p. 698-704Article 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
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-7299-9146

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