Efficacy of a school-based intervention to influence attitudes about future parenting among Swedish youth with intellectual disability: 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; control group 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.

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.

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.

A school-based intervention can promote insights into future parenting in students with intellectual disabilities-A Swedish interview study.

BACKGROUND: Few studies have focused on how youth with intellectual disability (ID) can be facilitated in reasoning about future parenthood. This study aimed to explore an intervention using the Toolkit "Childrenwhat does it involve?" and the Real-Care-Baby (RCB) simulator among students with ID. METHOD: Sixteen students with ID who participated in an intervention with 13 educational sessions, with adapted knowledge and a three-day caring session with the RCB simulator, were individually interviewed after the intervention. Qualitative content analysis was used. RESULTS: Participants reported that the intervention provided important thoughts and insights on future parenting, providing a basis for informed decisions. The ability to be responsible and have autonomy in life and in caring for a future child were described as important. CONCLUSION: After an intervention, with structured and adapted knowledge and experiences of the RCB simulator, students with ID reported an understanding of the importance of informed decisions about future parenthood.

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.

Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability-Focus group interviews among midwives in Sweden.

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.

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.

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.

An intervention using the Parenting Toolkit "Children-What does it involve?" and the Real-Care-Baby simulator among students with intellectual disability-A feasibility study.

BACKGROUND: There is limited knowledge about how young people with intellectual disability can be facilitated in their process of deciding about parenthood. This study aimed to evaluate the feasibility of an upcoming trial to evaluate an intervention using the Toolkit "Children-what does it involve?" and the "Real-Care-Baby" (RCB) simulator among students with intellectual disability. METHODS: Six students with intellectual disability participated in an intervention with eight educational sessions and a 3-day caring session with the RCB simulator. Data were collected with questionnaires and interviews. RESULTS: The study showed that it is possible to evaluate an intervention using these instruments among students with intellectual disability in order to provide them with further insights about parenthood. CONCLUSION: It is feasible to evaluate the Toolkit and the RCB in a cluster-randomized study and that such a study could add to our knowledge about possible intervention strategies regarding reproduction and parenting among students with intellectual disability.

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; Cl 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.

Midwives' comprehension of care for women with intellectual disability during pregnancy and childbirth: An open-ended questionnaire study in Sweden.

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.

Professional and social support enhances maternal well-being in women with intellectual disability - a Swedish interview study.

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.

Midwives' knowledge of, attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: a cross-sectional study in Sweden.

OBJECTIVE: to investigate midwives' knowledge of, attitudes towards and experiences of caring for women with intellectual disability (ID) during pregnancy and childbirth. 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 women with ID. Almost all midwives (97.1%) reported that caring for women with ID is different from caring for women without ID. Almost one-half (47.3%) had not received any education about pregnancy 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 women with 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 knowledge about these women. Some midwives had negative attitudes towards childbearing among women with ID. Health Service providers should encourage midwives to update their knowledge and provide supportive supervision in midwifery care for women with ID.

Struggling for motherhood with an intellectual disability--a qualitative study of women's experiences in Sweden.

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.

Newborns of mothers with intellectual disability have a higher risk of perinatal death and being small for gestational age.

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 International Classification of Diseases 8-10) were identified and compared with 340 624 children of first-time mothers without ID or any other psychiatric diagnosis between 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%) and 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 five minutes; 3.7 vs 1.5%) compared with children born to mothers 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.

Pregnancy and birth outcomes of women with intellectual disability in Sweden: a national register study.

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.

Emergency cesarean delivery in induction of labor: an evaluation of risk factors.

BACKGROUND: Induction of labor has been associated with an increased risk of emergency cesarean delivery. Knowledge of factors that influence the risk of cesarean delivery in women with induced labor is limited. METHODS: We performed a case-control study, nested within a population-based cohort of women with induced labor at term during 1991-1996 in Uppsala County, Sweden. Cases were women delivered with emergency cesarean delivery, and controls were women vaginally delivered (n = 193, respectively). Using logistic regression, analyses were performed. Odds ratio (OR) with 95% confidence intervals (CI) was used as a measure of relative risk. RESULTS: Women with a previous cesarean delivery had high risks of cesarean delivery (adjusted OR = 10.10, 95% CI = 3.30-30.92). The risk of cesarean delivery was also increased among nulliparous (adjusted OR = 4.92, 95% CI = 2.81-8.61), short (adjusted OR = 2.20, 95% CI = 1.06-4.59), and obese women (adjusted OR = 2.03, 95% CI = 1.07-3.84). A cervix dilatation less than 1.5 cm doubled the risk of cesarean delivery (adjusted OR = 2.26, 95% CI = 1.09-4.66). Mother's age, epidural analgesia, oxytocin augmentation, gestational age, and birthweight were not significantly associated with risks of cesarean delivery. CONCLUSIONS: Women with a previous cesarean delivery, nulliparous, short, and obese women with induced labor are at high risk of a cesarean delivery. When there is a need to deliver a woman with a previous cesarean section or a nulliparous woman with other risk factors for cesarean delivery, it may be prudent to consider an elective cesarean section.