The findings of the study are presented according to the following four major themes that emerged from the data analysis: 1) the broader context of intimate relationships and sexual life ofwomenwithSMI;2) attitude towards child bearing in womenwithSMI;3) experience of family planning in women with SMI; and 4)preferred family planning services.
Participant characteristics
In-depth interviews were conducted with 16 participants. The age of the participants ranged from 23 to 40 years old. More than half of the participants were unable to read or write (n = 9). Most of the participants described themselves as housewives (n = 11), or unemployed (n = 4), with the remainder reporting craft work and petty trade activities. The majority of participants were single (n = 10). The diagnoses of the participants, as provided by the Butajira cohort study, according to the diagnostic statistical manual fourth edition text revision were schizophrenia (n = 4), bipolar disorder (n = 6) and severe major depression (n = 6) (see Table 1).
Table 1
Descriptive Characteristics of Participants (n = 16)
Characteristics | Frequency | % |
Age (mean, standard deviation) | 35.3 (6.23) | |
Diagnosis | | |
Schizophrenia | 4 | 25.0 |
Bipolar disorder | 6 | 37.5 |
Major depressive disorder | 6 | 37.5 |
Marital status | | |
Single | 7 | 43.8 |
Married | 6 | 37.5 |
Separated | 2 | 12.5 |
Divorced | 1 | 6.3 |
Residency | | |
Education | | |
No education | 9 | 56.3 |
Informal | 2 | 12.5 |
Formal | 5 | 31.3 |
Occupation | | |
Housewives | 11 | 68.8 |
Self employed | 2 | 12.4 |
Unemployed | 3 | 18.8 |
Taking psychotropic medication | | |
No | 7 | 43.3 |
Yes | 9 | 56.3 |
Context of intimate relationships and sexual life of women with SMI
Many of the participants perceived that their mental illness had impacted upon their personal relationships. They felt that people in the community did not consider a woman with SMI to be a person fit for friendships, intimate relationships and a sexual life. They reported that women with a mental illness were defined and stigmatized by their illness, with this being considered to be the only thing worth their focus in life. Not only was this prejudice held by community members, but also shared by some of the health care professionals. Many of the women themselves endorsed the view that their mental illness should be the only concern in their life. Such attitudes led to a disruption of their relationships, if they had any. Many of the women spoke of such experiences:
They [people] think that a mentally ill woman doesn’t have extra needs beyond thinking about her illness. Single woman with schizophrenia (ID07)
Since she is mentally ill, she is considered as good for nothing and not able to get a man to marry her. Single woman with bipolar disorder (ID14)
A number of participants reported that women living with an SMI were highly vulnerable to abuse and sexual assault as a consequence of their illness. Others added how mental illness compromised women’s ability to assert their rights, and were forced to engage in behavior they were not comfortable with. A number of participants reported that they had been the victim of sexual violence or assault. Respondents described situations where men coerced women with SMI into engaging in various sexual acts:
… I have a small cottage and I have a small piece of land. I do my own work while I was living like this until one day he forced himself on to me, I didn’t like him, I didn’t will it, he didn’t talk to me. Single woman with schizophrenia (ID02)
When I was sick, someone who was living in our village deceived me. He told me that he would take me and marry me. He is a friend of my brother. Then he played tricks on me. Then, when my brother intimidated him, he stopped his action… When I got angry at home, I did something… I went out from home. It was at night and he forced [raped] me; he knows that I am mentally ill. Single woman with bipolar disorder (ID12)
Furthermore, for many of these women sexual assaults brought them unwanted pregnancies. The woman who had been assaulted by her half-brother spoke graphically of the assault as being like death for her:
I have a child from my brother…. It is embarrassing when your brother killed you and he lives his comfortable life. He went abroad a few days after he buried me [forced me]. Single woman with bipolar disorder (ID16)
Many participants observed that often people would comment negatively when a woman with SMI gave birth to a child after being sexually assaulted. The participants perceived that the community was judgmental towards women with SMI in this situation. For example, a homeless woman with SMI who had a child following a sexual assault was seen in the same way as a healthy woman who had a child out of wedlock. This is what a woman who had given birth recounted of what people had said to her:
They say “You are mentally ill and you give birth to a bastard?” and she replies “I am on the line [I am homeless]. What can I do?” They say “How can she give birth while she has mental illness?”Married woman with bipolar disorder (ID06)
Other women also described how their intimate relationships had been negatively affected by mental illness. When their partners discovered that they had a mental illness or they witnessed a relapse, their relationships came to an end, either by separation or divorce. Whether this was a formal or informal relationship, the outcome was usually the same:
He left me alone. He didn’t say a word, he left town, and he hid after he knew I gave birth and…. Umm that occurred to me when he knows I am mentally ill. Single woman with schizophrenia (ID02)
Child bearing in women with SMI
Participants had various concerns about child bearing in women with SMI, such as a fear of relapse of the illness during birth or after delivery, being unable to raise their children and difficulty in parenting, and the effect of the medication on their child. For all these reasons, most (n = 11) participants reported that women with an SMI should not give birth. The most frequently reported reason for a woman with SMI not to give birth was the risk of relapse. Participants tended to attribute the relapse of the mental illness in the post-partum period solely to the existing mental illness. Participants did not mention the role and impact of psychological and social factors. One participant shared her experience of illness relapse in relation to childbirth:
… When I was still having children, I used to suffer from a mental illness. It relapsed when I delivered. I am very sick now, this year it’s worse. Giving birth isn’t good with my mental illness… In my opinion; the child should have not have been born. When giving birth, the mental illness starts again… Yes, I got sick. That’s why I say I don’t want to have children. Married woman with major depressive disorder (ID09)
Aside from relapse, the second other major concern about childbearing was about not being able to care for their newborn baby. A number of participants reported that they were not able to provide adequate care, for example, with housekeeping and cooking, when their family support was either inadequate or non-existent. However, these worries were focused predominantly on the physical needs of the newborn. Emotional aspects of parenting were not mentioned by the study participants:
…. Yes, it’s hard, it’s even harder to manage ourselves let alone a child……A child cannot take care of himself. He can’t keep himself clean or he can’t even feed himself.
Single woman with schizophrenia (ID07)
Only one participant expressed fears that she might give birth to a child with health problems because of exposure to medication taken for the mental illness. Despite her concerns, this woman had never raised this issue for discussion with a health professional or others, and no one had given her any information about this issue:
She [a woman with mental illness] is on psychiatric medication and if she gets pregnant and gives birth, what is going to happen to the newborn, is he going to be mentally retarded or normal? I only ask myself about this, I never ask or talk with the health workers or with others. Single woman with bipolar disorder (ID15)
All of the participants reported that most families, the community and some health professionals were of the view that a woman with mental illness should not have children. This was perceived by the women as a negative attitude and not only advice given for the sake of their health. One participant highlighted the paradox of being condemned for getting pregnant on the one hand, but on the other hand, having little control over whether or not she becomes pregnant as follows:
……. How can she get pregnant if the illness doesn’t disappear? God’s work… People talk, saying why she didn’t get contraceptive injections and why she wanted to have children since she is ill… but pregnancy can come against her will by force… all people say no giving birth if she is mentally sick Married woman with bipolar disorder (ID01)
Family planning experiences and awareness in women with SMI
From most of the participants, there was initial resistance to talk about their knowledge of family planning which appeared to be related to the sensitivity of the topic. Most of them equated family planning with prevention of birth, rather than planned birth, and referred only to contraceptive interventions. Injection, pills and condoms were the contraceptives which were widely recognized by the participants. Only a few of the participants expressed awareness about implants and intra-uterine contraceptive devices. None of the participants had ever heard about emergency contraceptives. Some women expressed the view that the concept of family planning refers only to limiting the number of children an individual has, but does not include controlling the timing of pregnancy.
Misconceptions about family planning were evident. A majority of women considered contraception to be the only role of family planning. Some of the participants considered the definition of family planning to be only caring for the family and managing household activities:
… They say it is managing your home properly, caring for the family keep your hygiene, don’t sleep wearing clothes, sleep just wearing night clothes, care for your children.
Single women with bipolar disorder (ID11)
Two participants considered family planning to be specifically important for commercial sex workers. The participant expresses her understanding as follows:
I think it [Family Planning] is a business. …. Business is going to males to get money…. Women who do that, they know well about it because they are afraid to get pregnant.
Single woman with bipolar disorder (ID12)
Although condom use was generally recognized as a means of contraception, condom use was more often linked to promiscuity and preventing transmission of sexually transmitted diseases rather than an intervention used in family planning. The belief in the negative associations of condom use is conveyed by the following statement:
Condom means… indecent people use condoms; these people use them to create temporary relationships… to protect themselves from different problems, when they are in temporary relation. They are ill-mannered. They used it in hotels…. Single woman with bipolar disorder (ID15)
The majority of participants expressed inconsistent knowledge about contraceptives and some of them displayed concerns and apprehension about side effects. Despite this they reported that contraceptives were important in preventing pregnancy and expressed a positive attitude towards its use:
For me, a woman living with mental illness shall use implant earlier or, if she wants to have sex, she shall use pills or injection so that she can prevent extra mental health complications associated with such issues. Single woman with schizophrenia (ID16)
No woman spoke of being forced to use contraception because they were mentally ill. The main issue was that they were not able to obtain family planning services when they needed them because nobody made an effort to give it to them and they experienced insurmountable barriers to accessing family planning in primary health care.
Preferred family planning in women with SMI
Most of the study participants discussed that family planning services should be accessible for all women living with a mental illness. They spoke about the need for accessibility and privacy, and raised concerns about stigma, lack of adequate knowledge about family planning, and the need for special considerations in the family planning service. Most participants preferred to be provided with family planning services in a mental health clinic and by a mental health professional. The reason given was the need for the person advising on family planning to have adequate knowledge about mental health: The participants discussed this as follows:
We [women with SMI] need extra support, like advising and teaching slowly, as we don’t have faster functioning in understanding lessons/things. But I still insist it is good if mental health physicians could teach us so persistently and with utmost perseverance. Single woman with bipolar disorder (ID10)
Although almost all of the participants preferred to receive the service integrated with their mental health care, a few suggested their home as another alternative service area for family planning in women with SMI. The reason for this being that it would reduce the distance they would be required to travel and it would ensure privacy and confidentiality. These views are encapsulated by the following statements:
Health extension workers should teach us and our family. … They [women with SMI] need to get frequent advice and teaching… Yes, education is good. For a mentally ill women family planning would be good when they give time just like you have given me now and when they ask us and when they help us to understand, until now nobody has done this, this is my first time. Single woman with bipolar disorder (ID10)
Most of the participants also recommended that family planning services be offered individually and not in a group format. Most had seen family planning services provided in a group format and expressed that they would be afraid to ask questions and may find it difficult to understand the discussion as well as other group participants. Finally participants emphasized those women with SMI need awareness about, and access to, emergency family planning services. Most of the participants expressed their interest in emergency family planning service as they are a vulnerable group.