Pregnancy, Childbirth and Midwifery Care among Women with Intellectual Disability in Sweden : Epidemiological and Descriptive Studies

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

Pregnancy, Childbirth and Midwifery Care among Women with Intellectual Disability in Sweden : Epidemiological and Descriptive Studies

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

Midwives' work and attitudes towards contraceptive counselling and contraception among women with intellectual disability : focus group interviews in Sweden

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

Perceptions and imagined performances of pregnancy, birth and parenting among voluntarily child-free individuals in Sweden

Objective: Reasons to avoid pregnancy, birth and parenting among voluntarily child-free individuals remain largely unknown. The aim of this qualitative study is to better understand the perceptions and worries about pregnancy, birth and parenting among child-free individuals in Sweden. Methods: A total of 23 individual interviews were conducted in 2020- 2021, and data were evaluated in thematic network analysis. Results: The organizing themes captured significant consequences and complications of pregnancy and birth perceived by child-free individuals and their various thoughts about their unsuitability for parenthood. Reproductive health was associated with fears of pregnancy, birth, chronic disease and mental illness and long-acting reproductive contraceptives, sterilisation and abortion were regarded as appropriate, sustainable ways to remain child-free. Conclusion: Child-free individuals avoid exposure to pregnancy, birth and parenting due to fears, perceived risks, potential complications and their perceived unsuitability for parenthood. They greatly value and protect their healthy, unharmed bodies and emphasise sound family planning

Why and when choosing child-free life in Sweden? Reasons, influencing factors and personal and societal factors : Individual interviews during 2020-2021

OBJECTIVE: Few studies have examined a voluntarily child-free life in the Nordic countries. The aim of this study was to explore reasons, influencing factors, and personal and social factors in individuals who chose to lead a child-free life in Sweden. METHODS: Twenty-three individual interviews were conducted during 2020-2021, and data were analysed through thematic network analysis. RESULTS: The organising themes captured how the informants discovered pathways and managed social structures to feel certain in their decision to lead a child-free life. The informants highlighted freedom, independence and governing their own time in everyday life and acknowledged the younger generation as being more open-minded towards child-free individuals. CONCLUSIONS: All the informants, who had chosen to lead a child-free life, were confident in their decision. They appreciated living in a country where it was possible to make this personal and important life choice independently. Further knowledge is needed about remaining child-free

How can sexual and reproductive health and rights be enhanced for young people with intellectual disability? : focus group interviews with staff in Sweden

Background Different types of staff support individuals with intellectual disability (ID) in their daily life, in schools, leisure activities and in special accommodations. This study aimed to gain a deeper understanding of experiences and perceptions regarding sexual and reproductive health and rights (SRHR) among staff. Methods Data were collected in mid-Sweden in four focus groups with altogether 20 participants, 18 women and 2 men aged between 18 and 65 years. They had different professions and worked among youth and adults with ID aged 18–40 years in schools, accommodations and with leisure activities. Their working experience varied from 3 years to more than 20 years. Interviews were audio recorded, transcribed and analysed with content analysis. Results The participants generally described positive attitudes towards sexuality for people with ID, both among themselves and in society. However, many situations such as ensuring privacy, balancing between waiting and acting, issues around contraception and reproduction were difficult to address and participants had hesitations about childbearing. They described different strategies such as showing respect, enhancing self-esteem and decision making ability and using interprofessional support to cope with frustrating situations. They lacked a clear mandate from managers as well as written guidelines and policies. They requested education and support from peers, supervisors and other professionals. Conclusion Participants in the study were generally open-minded and accepting towards sexuality among young people with ID. They thought it was difficult to deal with reproduction/parenthood and felt unprepared and frustrated in certain situations. The participants requested a clear mandate from managers, organizational guidelines, more education and inter-professional support. We believe these findings can inform the development of policy and support the implementation of SRHR related guidelines to support staff working with young people with ID

The toolkit and Real-Care-Baby intervention – experiences of teachers and school staff in conducting an intervention about future parenting

AbstractFew studies have highlighted the perceptions of teachers and school staff carrying out an intervention about future parenthood at special upper secondary schools. The aim of the study was to explore the experiences of teachers and school staff when implementing an intervention using the Toolkit “Children—what does that involve?” and the Real-Care-Baby (RCB) simulator. Four focus groups interviews were conducted 2019–2020 with 16 teachers and school staff involved in the intervention for students with intellectual disabilities. The intervention consisted of 13 lessons during school hours and caring sessions with the RCB simulator which resembles a three-month-old baby. Supportive school principals and colleagues were a prerequisite to conduct the intervention. Participants extended their teaching role with a sense of social responsibility and created a deeper relationship with the students. Through the intervention, the students gained important insights about parenting. The study shows that implementing an intervention requires a consensus-oriented organisation of education in collaboration with motivated colleagues and supportive parents. The teachers and school staff are well suited to provide adapted knowledge of future parenting and support the students to make informed choices about adult life and parenthood

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

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

Increased risk for mental illness, injuries, and violence in children born to mothers with intellectual disability : A register study in Sweden during 1999-2012

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

Efficacy of a school-based intervention to influence attitudesabout future parenting among Swedish youth with intellectualdisability : An RCT study

Background: The study aim was to investigate the efficacy of an intervention designed to provide a basis for informed choices about future parenthood to special upper secondary school students with intellectual disabilities.Methods: A randomised trial with a waiting list control group was used. In total,108 special upper secondary school students with mild or moderate intellectual disabilities, age 16–21 years, provided informed consent and participated. The intervention included education using the Parenting Toolkit and a Real Care Baby simulator.The analyses included 91 students (intervention group n = 46, 24F/22M; controlgroup n = 45, 26F/19M).Results: The result showed that intervention group changed their attitudes to future parenting, from ‘do not know’ to ‘know’, significantly more than control group. The intervention increased knowledge levels in the intervention group. Conclusions: The intervention group showed increased ability to make informed choices and decisions about parenthood