EXPECTING THE UNEXPECTED: Unintended pregnancies and desire for children amongst persons with psychiatric vulnerability by Noralie Nicoline Schonewille
Colofon EXPECTING THE UNEXPECTED: Unintended pregnancies and desire for children amongst persons with psychiatric vulnerability PhD thesis, Vrije Universiteit, Amsterdam, The Netherlands This research was undertaken in close collaboration with MIND Platform. The research in this thesis was funded by ZonMw, grant number 554002007, and financially supported by Nu Niet Zwanger (funded by the Dutch Ministry of Health, Welfare and Sport). The printing of this thesis was kindly sponsored by Stichting Wetenschappelijk Onderzoek, OLVG Amsterdam. Author: Noralie Schonewille Cover: van Kira | www.vanKira.nl/phd Layout: Tiny Wouters Printing: Ridderprint | www.ridderprint.nl Copyright © 2024 Noralie Schonewille, Amsterdam, The Netherlands DOI: http://doi.org/10.5463/thesis.807 ISBN 978-94-6506-386-7 All rights reserved. No part of this thesis may be reproduced, stored or transmitted in any way or by any means without the prior permission of the author, or when applicable, of the publishers of the scientific papers.
VRIJE UNIVERSITEIT EXPECTING THE UNEXPECTED: Unintended pregnancies and desire for children amongst persons with psychiatric vulnerability ACADEMISCH PROEFSCHRIFT ter verkrijging van de graad Doctor of Philosophy aan de Vrije Universiteit Amsterdam, op gezag van de rector magnificus prof.dr. J.J.G. Geurts, in het openbaar te verdedigen ten overstaan van de promotiecommissie van de Faculteit der Geneeskunde op vrijdag 29 november 2024 om 13.45 uur in een bijeenkomst van de universiteit, De Boelelaan 1105 door Noralie Nicoline Schonewille geboren te Geleen
promotoren: prof.dr. B.F.P. Broekman prof.dr. O.A. van den Heuvel promotiecommissie: prof.dr. A. Popma prof.dr. P.W. Jansen prof.dr. C.L.H. Bockting dr. J.Th.C.M. de Kruif dr. J.M. van Ditzhuijzen prof.dr. C.J.M. de Groot
Content of this thesis Chapter 1 General introduction 7 PART I Psychiatric vulnerability, unintended pregnancies and 23 desire for children Chapter 2 Psychiatric vulnerability and the risk for unintended pregnancies, 25 a systematic review and meta-analysis Chapter 3 Experiences with family planning amongst persons with mental 51 health problems: a nationwide patient survey PART II Psychiatric vulnerability and birth outcomes 77 Chapter 4 Pregnancy intention in relation to maternal and neonatal outcomes 79 in women with versus without psychiatric diagnoses Chapter 5 Neonatal admission after lithium use in pregnant women with 103 bipolar disorders: a retrospective cohort study PART III Psychiatric vulnerability and lived experiences with family 119 planning Chapter 6 Family planning decision-making in relation to psychiatric 121 disorders in women: a qualitative focus group study Chapter 7 Exploring narratives on unintended pregnancies amongst 151 women with psychiatric disorders using interpretative phenomenological analysis Chapter 8 The conversation about family planning and desire for children 191 in mental healthcare: patients’ perspective versus professionals’ perspective in a mixed methods study Chapter 9 General discussion 233 Appendix English summary 263 Nederlandstalige samenvatting 265 Publications 267 Author contribution statements 269 PhD Portfolio 273 Dankwoord 275 Curriculum vitae 283
General introduction and outline of this thesis 9 Background information This thesis aims to unravel the way in which psychiatric vulnerability interferes with family planning, desire for children and birth outcomes. In this chapter, we will briefly introduce the relevant topics, provide the aim, methodology and outline of this thesis. Unintended pregnancies: a global reproductive health problem Unintended pregnancies (UPs) are pregnancies that are mistimed, unplanned or unwanted at the time of conception, as defined by the U.S. Department of Health & Human Services. Hereby, UPs combine two facets of pregnancy intention: the timing and desire. UPs can be either unplanned (which means the timing was not according to plan, but the pregnancy may be greeted with happiness) or unwanted (the pregnancy was not according to plan and not greeted with happiness). UPs pose a significant and widespread global health issue. Annually, approximately 120 million UPs, accounting for 48% of all pregnancies, occur worldwide1. Rates vary among different geographic regions, typically with higher rates in developing countries1. UPs often result in abortions, and sadly, many of these procedures occur under unsafe conditions, contributing to 7.9% of global maternal deaths1,2. As a result, the Sustainable Development Goals require countries to achieve by 2030 the objective of ensuring ‘universal access to sexual and reproductive healthcare services, including family planning, information and education, and the integration of reproductive health into national strategies and programmes’3. In the Netherlands, the average age at which women give birth to their first child is 30.3 years old, compared to 24.3 years old in 19704. The trend of an increasing maternal age at first child is visible in other high-income countries and is most likely explained by the ability to plan and postpone pregnancies5. Hereby, women can achieve personal goals such as studying, navigating their career and finding a partner to have a family with6. From a feminist perspective, this is a positive development that reflects optimal reproductive agency. However, there are obstetric risks related to birthing at increased age. Maternal age >35 years is linked to stillbirth, perinatal mortality and maternal morbidity and mortality7,8. In addition to an increasing age at first child, the absolute birth rate in the Netherlands decreases every year from 207.000 children born in the year 2000 to 168.000 born in the year 20224. The decrease of absolute birth rates could negatively impact society, as offspring aids in supporting national welfare in an aging population. Despite decreasing absolute birth rate numbers, and an increasing age at first child, the proportion of pregnancies that is unintended, remains high9. In European countries, including the Netherlands, pregnancies are unintended in approximately 25-30%10. In the Netherlands, little
Chapter 1 10 data has been published on this topic. One study from 2012 showed that one in five Dutch women experienced a UP during her lifetime, including both ongoing pregnancies, abortions and miscarriages9. Although not all UPs are unwanted pregnancies, the Dutch government put the issue of UPs on the national agenda since 2017, with the goal to ‘aid in preventing unintended and unwanted pregnancies’. This acknowledgment of UPs as a national problem has fueled research on the topic of family planning, especially in groups of persons with one or more vulnerabilities in their life, such as intellectual disabilities, poverty, young age and psychiatric vulnerability. As UP rates in Dutch women with psychiatric vulnerability are currently lacking, the development of tailored preventative programs to the needs of women who face UPs, is also challenged. This thesis aims to fill the knowledge gap on the prevalence of UPs amongst persons with psychiatric vulnerability. Unintended pregnancies and psychiatric disorders Past research indicates that UPs are associated with reduced sexual independence, compromised coping skills (specifically related to intimacy, asserting boundaries, or requesting contraception), engagement in abusive relationships, insufficient awareness about pregnancy planning, or challenges in accessing or using contraceptives11,12. Additionally, factors like diminished autonomy, lack of information, perceived stigma, and concerns about contraceptive safety complicate the process of pregnancy planning12. The convergence between psychiatric vulnerability and social as well as psychological predictors of ineffective contraceptive use may clarify the risk for UPs amongst women with psychiatric vulnerability13. Factors such as intimate partner violence, lack of social support and low self-esteem are interconnected with both reproductive decision-making and psychiatric vulnerability14 - 16. Women seeking termination of pregnancies often reported to have experienced traumatic events like sexual violence, alongside symptoms of depression and anxiety17. Psychiatric symptoms or symptoms related to psychiatric vulnerability might affect psychological processes crucial for the utilization of contraceptive methods. Loss of planning capacity, reduced oversight and difficulties with impulse control challenge reproductive decision-making18. Compliance with contraceptive methods might be diminished in situations where severe psychiatric vulnerability such as (a history of) mood disorders, schizophrenia, or related psychotic disorders impact cognitive or emotional functioning19-22. (Hypo)manic symptoms in women with bipolar disorder could lead to impulsive and hypersexual behavior, resulting in risky sexual conduct23. In women with eating disorders, oligomenorrhea might be misconstrued as reduced pregnancy risk and fuel beliefs about infertility, potentially leading to UPs. Moreover, oral contraceptives might not effectively prevent UPs in situations involving frequent purging24,25. Some studies conducted separate analyses on women exhibiting
General introduction and outline of this thesis 11 symptoms in the year preceding their pregnancy and found they were more susceptible to UPs compared to women without psychiatric vulnerability25,26. Heightened stress levels and depressive symptoms in young women with mental health symptoms and prolonged illness duration in severe mental illness patients are predictive of UPs, pointing towards an association between symptomatology and difficulties with achieving pregnancy planning21,27. Understanding if and how women with psychiatric vulnerability have an increased risk of UPs is important. Not only to identify target groups for preventative measures, but also because some women with psychiatric vulnerability use psychoactive medication, which may be harmful for the development of the fetus. In addition, women with psychiatric vulnerability may experience worsening of their symptoms during pregnancy, which can have a negative effect on pregnancy outcomes. In conclusion, there is a lack of understanding in the relation between UPs and psychiatric vulnerability. In this thesis we aim to also contribute to this call for qualitative inquiries. Moreover, we aim to research the possible (adverse) outcomes after UPs with quantitative methods. Impact of unintended pregnancies on mothers and offspring The existing literature predominantly links UPs to adverse maternal outcomes, such as an increased risk in ante- and perinatal depression, stress and interpersonal violence28-30. Women with UPs had longer hospital stays after delivery10. Mental health problems during pregnancy, including stress, may negatively impact birth outcomes. Delayed enrolment in antenatal care, smoking or other intoxications during pregnancy and less use of folic acid may also contribute to adverse birth outcomes10. Premature birth and low birth weight were both linked to UPs in studies on high-, middle- and low-income populations28,31-33. The evidence on an increased risk of miscarriage, stillbirth and neonatal death after UPs is still inconclusive31. In women with UPs, the postpartum period may be marked by decreased rates of breastfeeding, reduced quality of parent-child interactions and higher occurrence of externalizing problems in offspring during adolescence34-36. Challenges in parenting may also arise from these circumstances37,38. Data in the Dutch setting is required to interpret the clinical significance of possible adverse outcomes after UPs in the Netherlands. Moreover, novel studies could shed light on the possible positive outcomes of (unintended) births. As the birth rate is declining, welcomed UPs could be of societal significance in increasing the national birth rate. But also on a personal level, it is questionable if UPs bring about disadvantages only. In general, pregnancy and childbirth have been linked to positive outcomes such as motivation for lifestyle change and improved maternal mental health39,40. A qualitative study illustrated how pregnancy intendedness could influence the partner relationship, as improved relationship functioning was measured in couples with unplanned pregnancies, in
Chapter 1 12 contrast to lower levels of functioning in couples with planned pregnancies41. Qualitative and quantitative studies on (possible) positive aspects to unintended childbearing and parenting have hardly been conducted. This thesis will thus further explore the presence of both adverse and positive outcomes after UPs with qualitative and quantitative methods. Impact of psychiatric vulnerability on mothers and offspring The perinatal period (defined as the time from conception until one year after birth42) pregnancy and the postpartum period) can pose significant challenges for women with psychiatric vulnerability and their newborns. Psychiatric or mental disorders are ‘clinically significant disturbance in an individual’s cognition, emotional regulation, or behavior’, according to the World Health Organization. In literature, the terms ‘psychiatric disorders’, ‘mental (health) disorders’, ‘psychiatric vulnerability’ and ‘mental health issues’ are used interchangeably. In this thesis, the term ‘psychiatric vulnerability’ captures any history of psychiatric disorders and represents both persons in remission but at risk for relapse or persons with current (ongoing) psychiatric disorders who experience symptoms. Although studies on the relapse risk of psychiatric disorders during pregnancy are inconclusive, it is known that pregnancy and especially the postpartum can exacerbate psychiatric symptoms in women with psychiatric vulnerabilities to develop psychosis, manic or depressive episodes after birth compared to their risk during other life stages43-48. Research shows that the presence of psychiatric vulnerability during pregnancy can result in serious complications for both mothers with psychiatric vulnerability and their newborns, including higher rates of intensive care admissions, unplanned cesarean sections, gestational diabetes, and lower rates of breastfeeding49-51. Offspring born to mothers with psychiatric vulnerability tend to have lower birth weights, higher chances of being born prematurely, and more frequent low 5-minute Apgar scores49,50,52. Mother infant attachment may be challenged in dyads with mothers who have psychiatric vulnerability during pregnancy or thereafter53. Most likely there is an overlap between psychosocial risk factors for adverse pregnancy and maternal outcomes between women with UPs and women with psychiatric vulnerability, such as maternal stress, unemployment and unhealthy prenatal behaviors such as smoking. Adverse pregnancy and maternal outcomes are particularly linked to unwanted pregnancies, as opposed to unplanned but wanted pregnancies, indicating that pregnancy acceptance can alter birth outcomes in addition to the planning status of the pregnancy54. No previous research has been performed to understand the interaction between the presence of psychiatric vulnerability and UPs on birth and maternal outcomes. Especially mood disorders are studied in relation to birth
General introduction and outline of this thesis 13 outcomes. This is important, as mood disorders are the most prevalent psychiatric disorders during pregnancy and the postpartum55,56. A subgroup of patients at risk for perinatal depressive disorder, are women with bipolar vulnerability. Without treatment, there is a relapse risk of 60-80% for postpartum psychosis in women with bipolar disorder45,48. Treatment with preferably lithium, a mood stabilizer, protects from perinatal relapse. Aside from the psychiatric risk during pregnancy, birth outcomes in women with bipolar vulnerability appear to be adverse compared to outcomes of neonates born to women without bipolar vulnerability57,58. What is less clear, is the role of lithium and/or other psychopharmacological medication on birth outcomes, indicating another research gap. Family planning, desire for children and childlessness in relation to psychiatric vulnerability The working definition of family planning is ‘the ability of individuals and couples to anticipate and attain their desired number of children and the spacing and timing of their births’, used by the WHO Department of Reproductive Health and Research [2008]. Because family planning aims to fulfil reproductive goals (not just prevent unwanted pregnancies), involuntary childlessness among individuals with psychiatric vulnerability should be included in family planning research as well. Various factors linked to psychiatric vulnerability could hinder achieving desired pregnancies. Problems with sexual functioning, worries about passing on inheritable psychiatric disorders, and concerns about parental adequacy could cause hardship for persons with psychiatric vulnerability in regard to achieving their desired family size59-61. Past studies have demonstrated that persons with psychiatric vulnerability like schizophrenia, autism, eating disorders, substance abuse, and/or depression tend to have lower fertility rates compared to their unaffected siblings62,63. These large-scale studies strongly indicate that individuals dealing with psychiatric vulnerability may encounter challenges in fulfilling their reproductive intentions. Qualitative research on perspectives on family planning, desire for children and childlessness in relation to mental health amongst persons with lived experience with psychiatric vulnerability are needed. Reproductive health in psychiatric healthcare Information regarding reproductive health holds relevance for individuals with psychiatric disorders, given the intricate connection between mental and reproductive health. There is a scarcity of studies addressing family planning needs within mental healthcare. In 2009, Becker and Krumm already identified several gaps in this area, with studies often lacking the patient's perspective and insights into the attitudes of
Chapter 1 14 mental health professionals (MHPs)64. Even today, there remains a limited number of studies addressing these issues, particularly in countries other than the United States. Qualitative literature involving women with bipolar disorders has demonstrated that family planning is a significant topic of discussion during treatment, with a particular focus on the health of offspring in relation to the use of psychotropic medications and the heritability of bipolar disorder60. Women with borderline personality disorders who recently had a child expressed a desire to prevent intergenerational transmission of attachment problems and borderline personality symptomatology65. In addition, a lack of tailored parenting programs was disclosed. Given that transgenerational transmission of psychiatric symptomatology, parenting in relation to mental health and attachment are topics which generally fall within the expertise of MHPs, we hypothesize that MHPs should play a significant role in facilitating discussions about family planning. Previous studies in the field of reproductive health discussions in psychiatry have revealed that MHPs (and resident MHPs) reported obstacles, including moral concerns regarding patient autonomy and a lack of expertise when addressing family planning66,67. Possibly, patients and their close ones also encounter their own set of challenges in this context. Personal experiences with (the need for) discussing reproductive matters in psychiatry are lacking, both from a MHP and patient perspective. Aims of this thesis My dissertation seeks to provide insight in the impact of unintended pregnancies for individuals with psychiatric vulnerability from various perspectives. We aim to estimate the prevalence of UPs in national and international samples of women with psychiatric vulnerability, collect lived experiences of parents who experienced unintended pregnancies, capture professional experiences of mental health professionals with discussing family planning decision making and gather lived experiences of (former) patients (men and women) and close ones with discussing desire for children in psychiatric healthcare. To reach these goals, this thesis adheres to a mixed methods approach by building upon data from quantitative (parts I and II) and qualitative (part III) research designs. Methodology Table 1.1 presents the applied methods per chapter including data used.
General introduction and outline of this thesis 15 Table 1.1 - Applied methods per chapter including data used. Chapter Study aim Methodology Data used 2 To explore whether psychiatric vulnerability is a risk factor for UPs, by quantifying the presence of UPs amongst adult women with psychiatric vulnerability, in addition to comparing UPs in women with and without psychiatric vulnerability by means of a systematic literature search and meta-analysis. Systematic review and meta-analysis PubMed, Embase/Ovid, PsycINFO, Cochrane and Web of Science/Clarivate Analytics 3 To elucidate the perspective on family-planning from patients with mental health problems and their close ones. Semi-quantitative patient survey Survey MIND (Box 1.1) 4 To elaborate on previous literature by primarily investigating the incidence of UPs amongst women with various current/past psychiatric diagnoses versus women without psychiatric diagnoses. To compare maternal and neonatal outcomes between women with UPs versus non-UPs who delivered in the hospital and to assess the modifying role of current/past psychiatric diagnoses in the association between pregnancy intention and maternal/neonatal outcomes. Retrospective cohort study MoMentUM study dataset (Box 1.2) https://doi.org/10.1 7026/dans-xrt-du5k 5 To validate previous findings on neonatal outcomes after lithium exposure by comparing (re)admission rates in neonates born to women with BD with versus without lithium exposure. To elucidate the reasons for admissions in neonates born to women with BD. Quantitative retrospective cohort study Lithium dataset 6 To unravel childbearing intentions in relation to psychiatric vulnerability in persons with lived experience. Thematic analysis with framework method Focus groups MIND (Box 1.1) 7 To understand how women with psychiatric vulnerability give meaning to the experience of unintended pregnancies using interpretative phenomenological analysis. Narrative analysis Prospective in-depthInterviews with persons with psychiatric vulnerability during pregnancy and postpartum, included at the OLVG POP clinic in Amsterdam between March 2022 and February 2023 8 To investigate the need and experiences of patients, close ones and MHPs regarding discussing family-planning in mental healthcare during the reproductive phase of life. To inquire what, when and how MHPs should discuss family planning with patients. Mixed methods approach: semiquantitative patient surveys and focus groups Survey MIND, focus groups MIND UPs; unintended pregnancies, BD; bipolar disorders, MHPs; mental health professionals
Chapter 1 16 Box 1.1 - The MIND-panel MIND is a Dutch association for former or current patients with mental health problems and close ones of (former) patients with mental health problems. MIND represents the whole spectrum of mental health (www.wijzijnmind.nl (accessed on 1 December 2022)). Members of the MIND panel are recruited among the public with a request for participation ‘’Do you have experience with mental health problems yourself or as a close one?”. There are no other selection criteria. The panel consists of 4200 (former) patients and close ones. The members of the panel are invited to complete surveys through an email invitation approximately 10 times a year. Box 1.2 - The Maternal Mental Health and Unintended Motherhood-dataset The MoMentUM study is a retrospective cohort, compiled of women who gave birth in a large hospital in Amsterdam, the Netherlands. Included women are ≥18 years old with singleton pregnancies and birth registrations in the electronic patient file during January 1, 2015, to March 1, 2020. Patient characteristics (including pregnancy intention and psychiatric history), maternal (gestational diabetes, mode of delivery) and neonatal outcomes (e.g., gestational age, birthweight and Apgar scores) were registered by health care providers in hospital charts. We included 1219 women with and 1093 women without current/past psychiatric diagnoses.
General introduction and outline of this thesis 17 Outline Figure 1.1 displays the outline of this thesis, which navigates from a quantitative, to a semi-qualitative, and finally to an in-depth qualitative methodology. Figure 1.1 - How the studies built upon previous work: navigating between quantitative, semi-qualitative, and qualitative methodologies To portray an understanding of the international prevalence of UPs amongst women with psychiatric vulnerabilities, we started Part I of this thesis with a systematic review and meta-analysis (Chapter 2). Experiences with family planning and unintended pregnancies were collected in an explorative, nationwide patient questionnaire in Chapter 3. To fill the research gaps defined by the systematic review and meta-analysis, we investigated retrospective cohort data from a large, multiethnic, obstetric cohort with Development of interview guide Recruitment participants from explorative survey Validation of findings in two larger samples Inspiration interview guide based on surveys Validation of findings in Dutch hospital population Systematic review & meta-analysis MoMentUM cohort study Explorative survey MIND panel Focus groups Survey MHPs & second survey MIND panel In-depth interviews Quantitative work Semi-quantitative work Qualitative work Chapter 2 Psychiatric vulnerability and the risk for unintended pregnancies, a systematic review and meta-analysis Chapter 4 Pregnancy intention in relation to maternal and neonatal outcomes in women with versus without psychiatric diagnoses Chapter 3 Experiences with family planning amongst persons with mental health problems: a nationwide patient survey Chapter 6 Family planning decisionmaking in relation to psychiatric disorders in women: a qualitative focus group study Chapter 8 The conversation about family planning and desire for children in mental healthcare: patients’ perspective versus professionals’ perspective in a mixed methods study Chapter 7 Exploring narratives on unintended pregnancies amongst women with psychiatric disorders using interpretative phenomenological analysis Chapter 5 Neonatal admission after lithium use in pregnant women with bipolar disorders: a retrospective cohort study
Chapter 1 18 pregnant women and their offspring in Part II, Box 1.1 explains the MoMentUM study. We evaluated the UP rates and neonatal outcomes after unintended pregnancies in Chapter 4. A subgroup of the MoMentUM dataset was further analyzed in Chapter 5, as we evaluated maternal and neonatal outcomes after exposure to lithium during pregnancy. In this chapter, we present data on a selected group of women with bipolar disorders. In Part III we explored how persons with lived experience with psychiatric vulnerability view desire for children in relation to mental health, in a qualitative focus group study (Chapter 6). As we continued building on qualitative data from persons with lived experience, Chapter 7 describes narratives of women who have unintended pregnancies during their pregnancies and in the postpartum period using interpretative phenomenological analysis. This chapter specifically focuses on the personal impact of UPs on persons with psychiatric vulnerability. Chapter 8 displays the findings of a mixed methods study where quantitative data from two additional nationwide questionnaires (one questionnaire from the MIND panel (Box 1.1) and one questionnaire with mental health professionals) were combined with qualitative findings from focus groups with persons with lived experience in psychiatric healthcare. Here, we explored the perspective of mental health professionals on conversations about desire for children in psychiatric healthcare. This chapter presents integrated personal perspectives from focus groups and shared perspectives based on questionnaire data. Finally, Chapter 9 provides summaries and interpretations of all key findings in addition to directions for future research and clinical implications.
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General introduction and outline of this thesis 21 51. Etchecopar-Etchart, D., et al., Schizophrenia pregnancies should be given greater health priority in the global health agenda: results from a large-scale meta-analysis of 43,611 deliveries of women with schizophrenia and 40,948,272 controls. Mol Psychiatry, 2022. 27(8): p. 3294-3305. 52. Sūdžiūtė, K., et al., Pre-existingmental health disorders affect pregnancy and neonatal outcomes: a retrospectivecohort study. BMC Pregnancy Childbirth, 2020. 20(1): p. 419. 53. Galbally, M., et al., Major depression as a predictor of the intergenerational transmission of attachment security: Findings from a pregnancy cohort study. Aust N Z J Psychiatry, 2022. 56(8): p. 1006-1016. 54. Shreffler, K.M., et al., Pregnancy intendedness, maternal-fetal bonding, and postnatal maternal-infant bonding. Infant Ment Health J, 2021. 42(3): p. 362-373. 55. Arias-de la Torre, J., et al., Prevalence and variability of current depressive disorder in 27 European countries: a population-based study. Lancet Public Health, 2021. 6(10): p. e729-e738. 56. Ten Have, M., et al., Prevalence and trends of common mental disorders from 2007-2009 to 20192022: results from the Netherlands Mental Health Survey and Incidence Studies (NEMESIS), including comparison of prevalence rates before vs. during the COVID-19 pandemic. World Psychiatry, 2023. 22(2): p. 275-285. 57. Scrandis, D.A., Bipolar Disorder in Pregnancy: A Review of Pregnancy Outcomes. J Midwifery Womens Health, 2017. 62(6): p. 673-683. 58. Bodén, R., et al., Risks of adverse pregnancy and birth outcomes in women treated or not treated with mood stabilisers for bipolar disorder: population based cohort study. BMJ, 2012. 345: p. e7085. 59. Moore, D., S. Ayers, and N. Drey, A Thematic Analysis of Stigma and Disclosure for Perinatal Depression on an Online Forum. JMIR Ment Health, 2016. 3(2): p. e18. 60. Stevens, A.W.M.M., et al., Thoughts and Considerations of Women With Bipolar Disorder About Family Planning and Pregnancy: A Qualitative Study. J Am Psychiatr Nurses Assoc, 2018. 24(2): p. 118-126. 61. Basson, R. and T. Gilks, Women's sexual dysfunction associated with psychiatric disorders and their treatment. Womens Health (Lond), 2018. 14: p. 1745506518762664. 62. Power, R.A., et al., Fecundity of patients with schizophrenia, autism, bipolar disorder, depression, anorexia nervosa, or substance abuse vs their unaffected siblings. JAMA Psychiatry, 2013. 70(1): p. 22-30. 63. Liu, A., et al., The relationship of major diseases with childlessness: a sibling matched case-control and population register study in Finland and Sweden. Preprint, 2022. 64. Becker, P.T. and S. Krumm, Research on family planning issues in women with mental disorders. Journal of Mental Health, 2009. 65. Geerling, I., R.M. Roberts, and A. Sved Williams, Impact of infant crying on mothers with a diagnosis of borderline personality disorder: A qualitative study. Infant Ment Health J, 2019. 40(3): p. 405421. 66. Macaluso, M., et al., Residents Perceive Limited Education on Family Planning and Contraception for Patients with Severe and Persistent Mental Illness. Acad Psychiatry, 2018. 42(2): p. 189-196. 67. Krumm, S., et al., The attitudes of mental health professionals towards patients' desire for children. BMC Med Ethics, 2014. 15: p. 18.
Chapter 2 26 Abstract Background Unintended pregnancies (UPs) are a global health problem as they contribute to adverse maternal and offspring outcomes, which underscores the need for prevention. As psychiatric vulnerability has previously been linked to sexual risk behavior, planning capacities and compliance with contraception methods, we aim to explore whether it is a risk factor for UPs. Methods Electronic databases were searched in November 2020. All articles in English language with data on women with age ≥ 18 with a psychiatric diagnosis at time of conception and reported pregnancy intention were included, irrespective of obstetric outcome (fetal loss, livebirth, or abortion). Studies on women with intellectual disabilities were excluded. We used the National Institutes of Health tool for assessment of bias in individual studies and the Grading of Recommendations Assessment, Development and Evaluation method for assessment of quality of the primary outcome. Findings Eleven studies reporting on psychiatric vulnerability and UPs were included. The participants of these studies were diagnosed with mood, anxiety, psychotic, substance use, conduct and eating disorders. The studies that have been conducted show that women with a psychiatric vulnerability (n = 2650) have an overall higher risk of UPs compared to women without a psychiatric vulnerability (n = 16,031) (OR 1.34, CI 1.08–1.67) and an overall weighed prevalence of UPs of 65% (CI 0.43–0.82) (n = 3881). Interpretation Studies conducted on psychiatric vulnerability and UPs are sparse and many (common) psychiatric vulnerabilities have not yet been studied in relation to UPs. The quality of the included studies was rated fair to poor due to difficulties with measuring the outcome pregnancy intention (use of various methods of assessment and use of retrospective study designs with risk of bias) and absence of a control group in most of the studies. The findings suggest an increased risk of UPs in women with psychiatric vulnerability. As UPs have important consequences for mother and child, discussing family planning in women with psychiatric vulnerabilities is of utmost importance.
Psychiatric vulnerability and the risk for unintended pregnancies, a systematic review and meta-analysis 27 Background Unintended pregnancies (UPs) are a global health problem of large scale. Every year, 120 million UPs (accounting for 48% of all pregnancies) occur worldwide, although UPs rates differ amongst geographic regions with generally higher rates of UPs in developing countries1. UPs could either be mistimed (wanted but not planned at this specific moment in life) or unwanted (not intended at this point nor in the future). UPs are known to have serious consequences as they contribute to adverse maternal and offspring outcomes2, such as antenatal and chronic depression in mothers3-7, adverse birth outcomes2,8, lower rates of breastfeeding9,10, lower quality of mother- and father child interaction11, and higher prevalence of externalizing problems in puberty in offspring12. In addition to adverse effects of unintended births, UPs can also lead to abortions, which are often performed unsafely and account for 7.9% of all maternal deaths worldwide1,13. To prevent UPs, studies investigating risk factors are of utmost importance. Although several risk factors have been identified, such as young maternal age, low educational level (of both parents), and being unmarried14-18, other potential risk factors, such as mental health, are less explored. Studies already demonstrated that in teenage women with psychiatric conditions (depression, psychosis, and personality disorders) UPs are common19, but if this also applies for adult women is yet unclear. A previous review on (awareness of) reproductive health problems in women with serious mental illness (that included studies up to 2008) described that the risk of sexually transmitted diseases, pregnancy loss and having more lifetime sex partners is high amongst women with psychiatric conditions20. However, unwanted pregnancies and abortions in women who previously reported a psychiatric vulnerability were not the focus of this review. It has been suggested that psychiatric vulnerability (a history of psychiatric disorders according to Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV or 5 and International Statistical Classification of Diseases and Related Health Problems (ICD)-10/11 and/or current psychiatric disorder according to DSM-IV or 5 and ICD-10/11) could influence important factors related to UPs, such as sexual behavior, including victimization of sexual violence21 or disruption of menstrual cycles due to stress, use of antipsychotic drugs or weight loss in eating disorders22,23. Also, advanced planning capacities, which are required for adequate use of contraceptive methods and family planning,23,24 has shown to be diminished in women with psychiatric vulnerability. Thus, we aimed to explore whether psychiatric vulnerability is a risk factor for UPs, by quantifying the presence of UPs amongst adult women with psychiatric vulnerability, in addition to comparing UPs in women with and without psychiatric vulnerability by means of a systematic literature search and meta-analysis.
Chapter 2 28 Methods A review protocol was developed based on the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement25 and was registered with Prospero (review number CRD42020221072). Information sources and search strategy The electronic databases PubMed, Embase/Ovid, PsycINFO, Cochrane and Web of Science/Clarivate Analytics were searched on November 6, 2020 (see Additional file 1 for search strategy) to identify studies reporting the proportions of UPs in adult women with (and without) psychiatric vulnerability via self-report, structured clinical interviews, or diagnosis performed by a professional. There were no restrictions in publication date applied to the search. Only articles in English language were included. Unpublished studies and abstracts were excluded from the review. Eligibility criteria Presence of psychiatric vulnerability at the time of conception was a prerequisite for inclusion. Also, the main outcome, namely UPs that can result in both ongoing pregnancies and elective (induced) abortions, had to be reported. Studies that evaluated pregnancy planning (planned and unplanned pregnancies) instead of pregnancy intention were also included. Studies with or without ‘control groups’ (women without a psychiatric vulnerability) were included. Study selection Studies were eligible for inclusion if the following criteria were met: - study participants were women who had become pregnant. - participants were adults: 1) age ≥ 18 years, 2) 95% of the participants was ≥18 years old (mean age − 2 standard deviations ≥18), or 3) a subgroup analysis in women ≥18 years was performed. - participants had a psychiatric vulnerability (a history of psychiatric disorders according to DSM-IV or 5 and ICD-10/11 and/or current psychiatric disorder according to DSM-IV or 5 and ICD-10/11) via self-report, structured clinical interviews, or diagnosis performed by a professional. - studies evaluated proportions of unintended, mistimed, unwanted or unplanned pregnancies resulting in ongoing pregnancies or induced abortions. When articles reported unclear in- and exclusion criteria, the authors were contacted to provide this information. In addition, we contacted authors of studies from 01 to
Psychiatric vulnerability and the risk for unintended pregnancies, a systematic review and meta-analysis 29 01-2000 and more recent and invited them to share data in case this was not available for the meta-analysis in published papers. Data extraction Two independent reviewers (NS and NR) screened the identified articles separately based on title and abstract using Rayyan QCRI software26. Subsequently, full text screening was performed independently by NS and NR to see whether the articles fulfilled all inclusion and exclusion criteria. If no agreement was reached, a third reviewer (BB) resolved conflicts. Data synthesis was performed by use of a custommade form that entailed all information necessary to compare studies. Variables analyzed in this review were authors and year of publication, presence and type of psychiatric disorder, presence and type of comparison group (if available), study design, sample size, age of participants, timing and tool used to measure UPs and prevalence of UPs in the study population. NS conducted the full data extraction and NR verified this. Assessment of risk of bias The Grading of Recommendations Assessment, Development and Evaluation (GRADE)27 method was used to assess quality of the outcome UP. The National Institute of Health (NIH) tools for quality assessment28 were used to assess the risk of bias in individual studies according to study type. Studies were qualified as ‘good’, ‘fair’ or ‘poor’ considering the risk of bias in that study for our specific outcome ‘UPs’. Hence, studies were assessed solely on the ability to report data on the outcome of interest in this review. Inconsistency was evaluated according to the following levels of heterogeneity by use of I2 tests: 25% was considered low, 50% moderate and 75% substantial heterogeneity29. A cut-off p-value of < 0.05 was used to determine statistical significance of the test. Indirectness was based on the ability of the data to relate to UP rates and imprecision was based on the confidence intervals of the presented results. Publication bias was assessed by evaluating a funnel plot for possible asymmetry. Also, we considered the absence of (un) published articles (with negative findings) in this field. The quality assessments were performed by two individual reviewers (NS and NR), and a third reviewer was involved to resolve conflicts (BB). Procedure for data synthesis Odds ratios (ORs), relative risks (RRs) and risk differences (RDs) were reported if present. In case of observational studies without comparative designs, percentages
Chapter 2 30 and means were reported. A meta-analysis of prevalence of UPs amongst women with psychiatric vulnerability was conducted by use of random effects models with the software programmes OpenMetaAnalyst30 and Rstudio31. An I2 test was performed to investigate heterogeneity of the studies in addition to sensitivity analyses to control for robustness of the findings29. A p-value of < 0.05 was considered statistically significant. Separate meta-analyses (forest plots) of specific psychiatric disorder groups were performed in case of ≥4 studies per disorder. Results Study selection The inclusion process is displayed in Figure 2.1. After electronic searches were performed 5429 articles were extracted and consequently transferred to Rayyan QCRI software26. After duplicate removal, screening of title and abstract of 3334 articles was conducted. This resulted in full text reading of 58 articles to assess whether inclusion and/or exclusion criteria were met. Based on the eligibility criteria, eleven articles could be included in the qualitative synthesis. Of the eleven articles, eight articles could be included in the meta-analysis on the prevalence of UPs amongst women with psychiatric vulnerability (Figure 2.3) and four studies in the meta-analysis of OR on UPs between women with and without psychiatric vulnerability (Figure 2.4). Study characteristics The characteristics and results of individual studies are presented in Table 2.1. An overall sample of 18,681 women with (n = 2650) and without (n = 16,031) psychiatric vulnerability were included. Seven categories of psychiatric disorders are represented in this review: eating disorders32,33, mood disorders (depression or bipolar disorder)34-38, anxiety disorders36-38, trauma-related disorders36,37, psychosis and related disorders35,39, substance use disorders37,40, and conduct disorders41. Two studies reported on abortion as an outcome of UPs39,41 and the other nine studies on (live) births. All studies were conducted in high income countries. Some of the included studies inquired for pregnancy intention during pregnancy, however these studies varied in timing of assessment32,36,38,42. Other studies did not report in which trimester women were asked about pregnancy intention33,35,37,40. One prospective cohort study assessed pregnancy intention prior to conception and evaluated the number of positive pregnancy tests over the course of one year34. In case a woman (without pregnancy aspirations at baseline) became pregnant within twelve months, the pregnancy was defined unintended. In addition, some studies made use of (validated)
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