Abstract
Background:
Decision-making around pregnancy is challenging for women with severe mental illness (SMI), and several clinical and socio-cultural factors might influence this process.
Aim:
The main objective of this study was to determine factors that influence decision-making regarding pregnancy for women with SMI.
Methods:
Using a qualitative design, 42 women with SMI who were pregnant or planning pregnancy were assessed using a semi-structured interview by an independent researcher not involved in their clinical care. Areas of inquiry included knowledge about their illness, treatment; family and societal beliefs on mental illness and motherhood; illness management; and attitude towards medical advice.
Results:
Among the 42 women, majority of the women (88%) reported reduced autonomy in decision-making related to pregnancy. Stigma was one of the major contributory factors in decision-making. Over 80% reported not using contraception despite medical advice due to lack of control over the decisions related to the use of contraception. Over 50% of the women in the study believed that taking psychotropic medications during pregnancy would definitely harm the baby. A similar number believed that their illness would not recur if medications were to be stopped during pregnancy.
Conclusion:
Women with SMI who plan to become pregnant, especially from low-income settings in India, are disadvantaged by stigma and societal expectations, affecting their ability to make optimum decisions during this crucial period. Decision-making around pregnancy in women with SMI is complex and appears to be influenced by several socio-cultural factors and needs to be dealt with sensitively.
Introduction
The perinatal period for women with severe mental illness (SMI) is often characterized by uncertainties about the course of illness and the well-being of the baby. Decisions related to pregnancy and the well-being of the baby involve several complexities, especially among women with limited access to health-related information and services. In addition, the stigma associated with mental illness can act as a barrier to seek help (Andrighetti et al., 2017). An understanding of the decision-making process among women with SMI would guide the health professionals in providing perinatal mental health–related advice.
There is emerging evidence on decision conflict and factors affecting decision-making during pregnancy for women with mental illness, from high-income countries. Malek (2017) explored the ethical aspects of maternal decision-making, addressing questions on who should make the decisions, how should decisions be made and the role of the clinician and highlighted the role of culture on decision-making. Patel and Wisner (2011) explored the complex process of decision-making using web-based surveys during the perinatal period among a hundred women and reported that an active collaborative role was preferred by most women who suffered from depression (Patel & Wisner, 2011).
Factors influencing decision-making among women with SMI may include nature of illness influencing the capacity to make informed decisions, uncertainty about relative risks and benefits to self and the foetus if medication is continued or stopped, societal ideas around motherhood and the pressure on a woman from the family to bear a child, lack of adequate information and resources for women with low mental health literacy and, finally, the lack of sense of agency among women with SMI, particularly in some societies where the family’s decisions may override a woman’s own wishes.
The emerging evidence on decision conflict and factors affecting decision-making during pregnancy for women with mental illness from high-income countries may not be directly applicable to women from low- and middle-income countries’ (LAMIC) situations due to unique socio-cultural issues and resource constraints. Decision-making is a process that is influenced by the individual experiences as well as the influences of the context the person lives in and the qualitative research approach appears to be a better-suited methodology (Hammarberg et al., 2016). Given that women with SMI are a unique group and there are inadequate data on this topic, a grounded theory approach to research is more likely to give a better understanding about the process and factors related to it. This study examines factors that influence decision-making about pregnancy among women with SMI who presented to a specialized perinatal psychiatry clinic in India, using a qualitative research design.
Methods
This was a qualitative study conducted between September 2015 and October 2017 at the Perinatal Psychiatry Clinic, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore, India. The Perinatal Psychiatric Clinic at NIMHANS runs once a week and provides comprehensive services to women with mental health problems related to the perinatal period including preconception counseling. As a routine, all patients presenting to this clinic would first see a psychiatry trainee and then get reviewed by a consultant psychiatrist. The consultant psychiatrists discuss the diagnosis, risk of relapse, severity of illness, course of the illness during the perinatal period, the impact of medications on foetus and pregnancy, and the need for monitoring for the well-being of the mother. They would then see other clinicians such as clinical psychologists and/or social workers, as required for their care. Women who attend the clinic are usually referred to the clinic by their psychiatrists, by obstetricians and sometimes they are self-referred. Both women from urban Bangalore and rural areas, as well as smaller towns around the city, receive help from this service and are commonly accompanied by a family member.
Patient selection
The study used purposive sampling. Women attending the clinic who had a pre-existing SMI and were either pregnant or planning pregnancy were approached for the interview. Women with intellectual disability disorders were excluded. Women who agreed to participate were then asked for their consent to speak with their family members as well. The interview was done after the consultation with the psychiatrist was completed.
Informed consent was obtained from the woman and the family member (when included) and the study was approved by the Institutional Ethics Committee of NIMHANS.
Data collection
Demographic information, details of previous pregnancies, psychiatric history, and current diagnoses were collected from the medical records. A semi-structured interview schedule was developed, using a topic guide to elicit information on the factors influencing decision-making regarding pregnancy on a background of mental illness. This interview was developed based on literature review and discussion among team members. Interviews were audio-recorded, transcribed verbatim, and translated. Family members were interviewed only if women consented for the same. Each interview lasted for 30–45 minutes.
Procedure
In-depth interviews were conducted with women who consented to participate in the study by a trained psychiatrist (A.B.) who was not involved in the clinical care of the subjects. Probes in the form of clarification and details were used during the interview. Women and family members were interviewed in their vernacular language. Interviews were conducted until theoretical saturation was reached, that is, no new themes were emerging.
The semi-structured interview is provided as Supplemental Appendix.
Analysis
All transcripts were translated from Kannada or Hindi languages into English. These were read and re-read by four independent raters (A.B., G.D., M.H.N. and P.S.C.) and predominant categories that emerged were documented. Iterative constant comparison was used from the onset of the coding process. The interview transcripts were analysed through a process of substantive and theoretical coding assisted by memos. Based on the grounded theory substantive approach of Glaser and Strauss (1967), coding phases included open, axial, and selective (Glaser & Strauss, 1967). Through initial open coding, meaningful paragraphs were selected and coded and categories were named based on similarities. Related concepts were identified from the different codes through subsequent axial coding. Finally, selective coding integrated all categories within a core category which led to the formulation of our substantive theory. Theoretical saturation was achieved through constant comparison until a sufficient understanding of the emerging themes had been acquired. Analysis and bias were minimized by independent coding of themes by three authors (A.B., M.H.N. and G.D.) and further independent consensus related to these themes and quotes to substantiate them by a fourth author (P.S.C.).
Results
A total of 42 women were included in the study. Majority of the women interviewed were within the age range of 22–36 years and most of them (88%; n = 36) were from a lower socioeconomic status. Of the 42 women, 32 (76%) were not yet pregnant and visited for pre-conception advice. Bipolar disorder was the most common diagnosis (67%; n = 28) followed by schizophrenia (20%; n = 8), while the rest (13%; n = 6) had other psychiatric diagnoses. Only two women were actively symptomatic (one with a diagnosis of BPAD − manic episode and the other with post-hypoxic sequelae); the rest had some residual symptoms with near-normal functioning.
The main themes related to decision-making are mentioned in the following sections.
Decreased risk perception related to mental illness in the perinatal period and excessive focus on medication-related risk to the foetus
Half the women interviewed (50%; n = 21) believed that their illness would not recur. A similar number of women strongly believed that medications would adversely affect the baby and had already stopped or would stop medications during pregnancy. Of the remaining half, 24% (n = 10) were unsure of the effect of medications on the baby. Only a minority of women (3/42) would not stop medication during pregnancy irrespective of the effects on the baby and they believed that they would relapse if they discontinued medications.
While there were concerns about the effect of medication on the foetus, half of the women (48%; n = 20) believed that their illness would not affect the baby in any way. About 40% (n = 17) had not thought about the impact of their mental state or illness on the pregnancy or foetus and were unsure about the adverse effects of illness if any.
The beliefs about the effects of medications in pregnancy had not altered despite consultations with a perinatal psychiatrist: We want a child but because of medications, we are restricted. They (relatives) said she (N) is not getting pregnant because of the medicines. If medicines are stopped then she can have a child. (Mother of 26-year-old N (diagnosed with BPAD))
Knowledge about the effect of illness during pregnancy was also limited and culturally driven: . . . illness is in my head . . . baby will be in my tummy so nothing will happen . . . baby is the priority. I don’t think that (illness) will affect the child . . . but if this lady (N) doesn’t eat properly, behaves abnormally then it could affect the child . . . (Husband of N (diagnosed with post-hypoxic sequelae of attempted hanging))
There was a tendency by the subjects to rely upon doctors for decision-making if there were to be a problem related to pregnancy or any adverse effects on the foetus: that is what I don’t know . . .. I’ll come and ask the doctor what to do. We had scanning done, reports are all fine. no . . . doctor said I won’t fall ill. if there’s a problem . . . we’ll come and consult here again. (N’s mother)
Lack of autonomy in making decisions about planning pregnancy and contraception
Majority of the women (88%; n = 37) reported reduced autonomy in their decision-making process related to pregnancy. Irrespective of their ambivalence about pregnancy, most women (79%; n = 33) were sexually active and were not using contraception. They reported that their husbands or extended family members had the most influence on decisions around pregnancy and contraception: Dr: So, from the beginning, you haven’t used any contraception? R: No, we didn’t use anything. His sperm count is little low, that’s why we haven’t got pregnant till now. if sperm is strong then it will work. Dr: So, before you knew about this . . . initially, when you had sex with him were you worried that you would get pregnant? R: I had no worries . . . I didn’t have any feelings at all Dr: Feelings about having a child? R: Not only about child, but I also wasn’t having any feelings about sex, getting involved and doing it; nothing. Just did it as a duty and carried on. Dr: So, at that time you weren’t using any contraception . . . did you have any tension that if you get pregnant what will you do . . . how will you manage? R: No tension . . . but there will be a pain, during delivery, isn’t it ? . . . that worried me a little. how will it be ? . . . will I be able to tolerate that pain or not ? . . . I was worried about that . . . that’s all. (R, 36 years old, diagnosed with schizophrenia, married for 9 years) Dr: If they were not urging you to have a child, what would you do? what would be your decision? J: I can wait for a year, nothing will happen. but they are very keen on it now Dr: so, what is the difficulty for them if you wait for a year J: first the society says . . . its already been 1.5 years no children yet, that’s what they feel. I think first preference has to be given to the child it seems Dr: that is what they say? (pause) Dr: or do you feel that way too? J: I also feel that way Dr: if it’s only left up to you if you leave aside your family and society etc. . . . if only you had to decide based on your wishes, considering your illness and baby, what do you want to do? when do you think would be the right time to get pregnant? J: right time means . . . I’m still getting a lot of anger . . . I should control that, get a bit relaxed, and then I should get pregnant . . . this is my wish. (J, diagnosed with schizophrenia, was sent to her mother’s house when she became unwell; when she started recovering, she was brought for pre-conception counseling by her husband)
Secrecy, poor communication about mental illness with spouse and in-laws
For the women who had some support from family in making decisions, stigma and concerns about the behaviour of the family members towards them contributed largely to their thought process: to me . . . if you ask me to wait for long it will be difficult I think. If I’m taking tablets . . . if others find out, they will say things like ‘she has an illness’ . . . she’s got some illness so . . .. that’s why she is consulting someone. If one person finds out the whole town will find out. (H, diagnosed with BPAD, married for 1.5 years, has been trying to conceive since then)
Many women had not revealed their illness to their husbands before getting married. This then added to their concerns and fears and also influenced the attitude of the spouse or his family: Dr: did you tell him about your previous history of mental illness, that you had been unwell in the past? S: no except for that I had told him everything Dr: did you plan this pregnancy or was it accidental? S: no, he did not want a child, but I thought at least my child will show me some affection so I planned it myself . . . he didn’t say anything . . .. it is difficult for him to keep me at home I think . . . that may be the reason. he complains about me for no reason even though I don’t have any problem. when the (mental health) problem started he forced me to leave him. (S, 25 years old, diagnosed with BPAD) they (in-laws) said you didn’t tell us about the illness earlier, they were upset about it. then my husband was called to the clinic so that he can understand the illness. then he went and explained to his mom. it seems she was very upset and cried a lot at that time, that we did this to her. . . .. (sobbing) . . .. they were saying they wanted me to have kids . . . when my periods stopped, they’re ok . . . now they are good to me. (N, 21 years, diagnosed with psychosis NOS)
Preference for a male child
Majority of the women who were preparing for their first child (76%; n = 32) said that they did not have a gender preference for their child. The rest (23%; n = 10) had daughters and stated that preference for a male child as the reason to plan for pregnancy.
My mother says a daughter is enough but they are not agreeing to this in my husband’s house. (S, diagnosed with bipolar disorder, who has a daughter and had come for preconception counselling) ummm . . . no . . . we have two daughters so we wanted to have a son now . . . that is why I need to conceive . . .. it is not that we don’t love our daughters . . . (M, 32-year-old lady with a diagnosis of bipolar disorder, mother of two daughters) J diagnosed with schizophrenia: J: they’ve said they want a male child Dr: who said so? husband or in-laws? J: husband said it Dr: if it is not a male child, could there be a problem? J: there shouldn’t be a problem. any baby will be fine . . .. I think Dr: is that what he said J: he said it . . .. I think
In some instances, the desire for a male baby meant a rapid succession of pregnancies for the mother.
As it was in the case of S diagnosed with Bipolar disorder who has a daughter and had come for preconception counseling . . . one more pregnancy and if I have a boy, we’ll get operated (tubal ligation). The first time, a girl was born but she died. Elder daughter is there. The second time, I had one, that was daughter again and this is what happened to her. Then, the third one was the abortion I had done. Then one more I lost at 5 months. So, this way I’ve lost three till now . . .
Minimizing the responsibility of motherhood and lack of preparation
All women in the study (100%; n = 42) responded that they had not taken any steps to prepare themselves for motherhood, and only some of them (10%; n = 4) acknowledged that life would be more difficult after childbirth.
what’s so hard about having a baby? first 6 months it will sleep, the next 6 months it will crawl, then it will start running and playing . . . not a problem. (A 24-year-old with a diagnosis of bipolar disorder had come for preconception counseling)I haven’t thought like that . . . it’s God’s gift . . . can’t deny it also. (S, 25-year-old with a diagnosis of bipolar disorder who has one child) everyone does it (being a mother) . . . I can also do it . . . no, why will I have any difficulty?
Discussion
This study examined the factors that affect decision-making around pregnancy among women with SMI who attended a perinatal psychiatry service in India. Factors that appeared to affect decision-making included reduced autonomy of the woman regarding contraception and pregnancy planning, stigma and secrecy about pre-existing mental illness, societal and family pressure to become a mother, preference for a male child, the negation of the risk of relapse if medications were to be stopped and finally the lack of an understanding about the effect of maternal illness and medications on foetal development.
The study also highlights the lack of awareness about the course of illness during pregnancy and describes the impact of limited mental health literacy and stigma on decision-making. The effect of stigma in persons (especially women) with SMI and reduced access to mental health care has been well documented in Indian studies (Srivastava, 2013; Thara & Srinivasan, 2000). In some instances, stigma was associated with secrecy which further led to a reluctance to think openly about professional advice, not just by the patients but by the family members as well. In a qualitative study conducted in rural India, knowledge, tradition, stigma, and accessibility of services have been documented as primary factors affecting decisions related to reproductive health matters in women (Somen Saha, 2005).
There is a significant emphasis on women to get married and bear children in Indian culture and is a common reason why women may not disclose about mental illness to their spouse and his family. A study done in India from six states concluded that family-arranged marriage is still the most prevalent form of marriage. Also, they are less likely to communicate and interact with their husband and experience more limited agency than women when compared to semi- or self-arranged marriages (Jejeebhoy et al., 2013). This study also draws attention to reduced autonomy and lack of agency among women with SMI. In a vital and highly personal decision such as pregnancy and management of mental illness, women relied heavily on their family’s perceptions and seemed to make decisions that would secure their current and future safety within their family.
Despite a gradual move towards improved rights for women, India is still a largely patriarchal society with strictly defined gender roles where marriage and motherhood are considered primary status roles for women. When a woman has a mental illness, there is a further denigration of her rights and increased emphasis on the need to prove herself by procreating and fulfilling her duties (Sharma et al., 2013). A study on women’s autonomy in decision-making on their health care from South Asia revealed that decisions were often made without their participation and their autonomy being influenced by age, education, income, and socioeconomic status (Senarath & Gunawardena, 2009).
Majority of the women in our study showed poor risk perception about the effect of the mental illness on the baby and seemed to have firm notions about the prognosis of illness and ill effects of medications despite being reasonably advised by highly qualified specialist clinicians. Women in our study did not seem to talk to their spouses about contraception either, and the default state was to not use any, often with a presumption that their husbands will not approve. Whenever there was overt coercion about planning to start a family, women in our study tended to go along with the desires of their husbands or in-laws.
Their reduced autonomy also strongly influenced their decisions around contraception which has also been documented in a qualitative study conducted among low-income, non-pregnant, African American women (Hodgson et al., 2013). The pressure to have a male baby continued to remain an added factor influencing decision-making.
All the women in our study were interviewed after they had been advised and counseled by specialist perinatal psychiatrists. Despite this, women with SMI and their family members appeared to be making decisions based more on socio-cultural beliefs rather than medical advice. Societal values of birthing children overrode all other decisions, even when warned about risks by medical professionals about stopping medication or the need for planned parenthood.
Ethical questions surrounding reproduction are some of the most challenging questions encountered in clinical practice, in any culture (Desai & Chandra, 2009; Malek, 2017). The American College of Obstetricians and Gynecologists states, ‘although it may be appropriate and helpful for the father to be involved in these decisions to assign him any authority to assent or dissent would unjustifiably erode the autonomous decision-making capacity of the pregnant woman’. While Western societies may emphasize on individual autonomy and personal well-being, these are as yet aspirational notions for women from LAMIC. Cultural understanding of their difficulties is vital for clinicians working with this population.
Clinicians need to not only aid decision-making that is in line with parental obligations but also promote the emotional and physical well-being of the mother. It has been demonstrated that improved autonomy is associated with better access to health services, including antenatal and postnatal care (Mistry et al., 2009). Creative methods of communication, such as using visual aids or short films depicting risks of stopping medications as well as real risks to the foetus and highlighting the need to balance maternal mental state and foetal well-being may be required. A study has reported effective usage of patient decision aids which are an interactive website that aimed to help women in the decision-making of choosing an antidepressant (Vigod et al., 2016).
The strengths of this study include in-depth interviews conducted by independent interviewers with multiple raters for analysis and adequate sample size and interviews with family members as well as the woman.
A major limitation of this study is that the sample is from a specialized perinatal psychiatry service which caters to more severe and complex mental illness and the current sample consisted mainly of women from low-income settings. The above findings may not be generalizable to all population groups and health settings.
Despite these limitations, this study adds to the body of knowledge that examines how women with SMI in India make decisions about motherhood and pregnancy.
Conclusion
The process of decision-making in pregnancy is a complex one which can be even more challenging for a woman with SMI. Especially, in LAMIC, cultural issues and patriarchal norms can make the process even more challenging.
This study emphasizes important aspects that contribute to decision-making and can inform mental health professionals to develop methods of increasing autonomy among women in this regard and also develop literacy appropriate aids for decision-making. Future studies should focus on the process of decision-making and its impact on well-being on women with SMI and consider an ethnographic approach to understanding the experiences of women coming from particular strata or a culture.
Supplemental Material
sj-docx-1-isp-10.1177_0020764020925104 – Supplemental material for Factors influencing decision-making around pregnancy among women with severe mental illness (SMI): A qualitative study
Supplemental material, sj-docx-1-isp-10.1177_0020764020925104 for Factors influencing decision-making around pregnancy among women with severe mental illness (SMI): A qualitative study by Ashlesha Bagadia, Madhuri H Nanjundaswamy, Sundarnag Ganjekar, Harish Thippeswamy, Geetha Desai and Prabha S Chandra in International Journal of Social Psychiatry
Footnotes
Conflict of interest
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship and/or publication of this article.
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References
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