Main theme
The stories of women expressed that they have a perceived need and a positive attitude towards having children, but due to the nature and negative effects that this disease has on pregnancy and vice versa, understanding the consequences of pregnancy, contradictory views from the social network, and the insufficient infrastructure of the health care system make them afraid about getting pregnant. Therefore, women’s experiences are the main actors in the theme of “duality of desire and fear in childbearing”.
1.
Individual health concerns following pregnancy: The vast majority of the participants indicated their apprehension about becoming pregnant due to the potential adverse implications that pregnancy might have on their own personal health.
1.1.
Suffering from an ambiguous disease: All women discussed the difficult aspects of having children. According to them, the condition of variable and unstable health and the signs of progressing disease force them to make an intelligent and considered decision regarding whether or not to have children or increase their current family size.
I became extremely tired and had problems walking, but that wasn’t all: I also experienced painful joints, a fever, a rash that looked like a butterfly, hypersensitivity to the sun, and loss of hair. When it was cold, my fingertips would become white, and I’d get sores in my mouth and nose. If I get pregnant or give birth, it is not clear whether these symptoms will get worse or not. This uncertainty about the condition of the disease bothers me. (P16, systemic lupus erythematosus, 35 years old).
1.2.
Limiting self-care in daily life: Some women have indicated that they should have a healthy lifestyle; nevertheless, having children creates a barrier to self-care and following through with their treatment procedure. One of the women explained that:
I recognize the importance of leading a healthy lifestyle, which requires adequate sleep and stress reduction. Well, I tell myself, I might not be able to properly care for myself if I become pregnant. I also don’t have enough time to go to the doctor, get tests done, or take my medications as scheduled if I have another baby. That’s why I believe one child is enough. (P20, granulomatous mastitis, 31 years old).
1.3.
Fear of postpartum disease recurrence: According to the experiences of women who have rheumatoid arthritis diseases, there are periods in which the symptoms become more severe, which are referred to as flare-up periods, and there are periods in which the symptoms improve, which are referred to as regression periods. In other words, they strongly held the belief that the symptoms of the disease changed throughout the course of time. The majority of the individuals pointed out their fear of experiencing another flare-up of their condition after giving birth as their primary motivation for postponing pregnancy. One of the women said:
My medical condition alternates between getting better and getting worse. The physician says that if you become pregnant, the disease will subside, but after childbirth, the condition will be very difficult, so I am doubtful. I am particularly concerned that the rheumatoid arthritis will flare up again after my pregnancy. (P17, Rheumatoid Arthritis, 41 years old).
2.
Motherhood and womanhood perceptions: From the perspective of women, being a mother was one of the key elements that contributed to the development of a sense of social identity, especially in traditional societies. They held the opinion that becoming a mother was a requirement for women to receive recognition from society because it is a common cultural norm.
2.1.
Motherhood as an individual desire: The interviews revealed that having children is one of the interests of women and a worthwhile effort. One participant talked about her experience:
I have two children; my boys are very smart. Despite the fact that I am always around them, I still feel as though I need more kids. (P9, scleroderma, 38 years old).
2.2.
Motherhood as an asset and opportunity to affirm womanhood: The majority of women placed a high value on motherhood, which was entrenched in cultural and attitudinal factors as well as the restructuring of cultural policy-making bodies to increase the population. This emerged clearly from the words of one of the women, which are as follows:
I typically feel bad about not having been able to have children and not being able to get pregnant. Our country encourages people to have children. I even thought about surrogacy or adoption because of this. (P25, Behcet’s disease, 41 years old).
The narratives of women participating in the research expressed the concept of identity completion after becoming mothers. They believed that the sense of completeness has a close connection with the category of motherhood, and because they consider motherhood to be effective in establishing their identity, they feel pleasure and fulfillment from motherhood. One woman shared her experiences as follows:
Now when I want to wash the baby, it’s difficult for me, but I can cope with it because a mother’s sweetness is excellent and delightful. It somehow makes femininity complete because I am proud to be a mom (P22, Rheumatoid arthritis, 32 years old).
2.3.
Regret for missing the opportunity of motherhood: Women stated that their age had increased and that the chance of becoming pregnant had decreased because of their medical conditions. Some of them felt bad about this process. One of the women spoke up:
Now my age is increasing and my pregnancy is getting late. I sometimes think to myself that the disease continues to prevent me from having children, and regret remains for me. (P2, Rheumatoid arthritis, 32 years old).
3.
Concerns about child harm: The women believed that rheumatoid arthritis has an impact on a variety of aspects of life, including one’s occupation, leisure activities, and social interactions. They believed that they were faced with not being able to meet a newborn’s numerous demands, such as preparing food, nursing the infant, cleansing the infant, and creating a hygienic environment. Women thought that they were not capable of becoming adequate mothers since they were unable to complete a significant number of the tasks. This concern was so great that some of the participants decided against having children.
3.1.
Fear of congenital abnormality: Concerns about potential harm to the fetus were one major driving force behind avoiding pregnancy. One of the participants said:
I got pregnant once. My baby was born at seven months due to pregnancy poisoning and died 48 h later. Well, I am afraid that the experience will repeat itself and the child will be injured. For example, I read in the articles that the child may have a cleft lip or six fingers. (P16, scleroderma, 42 years old).
3.2.
Failure to meet the infant’s requirements: One of the concerns that the women had was that the disabilities brought on by their condition would prevent them from being able to respond to and meet the requirements of their child in a way that was suitable.
I worry that I won’t be able to take care of the baby. Or that I’m not sufficiently competent to take care of my child. Because this illness caused me a lot of trouble, including severe joint pain. (P11, sarcoidosis, 27 years old).
According to the experiences of women, rheumatoid arthritis has a variety of negative impacts on one’s physical health and can lower the standard of care provided to children because this disease results in pain, low energy levels, and fatigue. One of the women described her experience like this:
I am a mother. I cannot play with my child. And because I’m so exhausted, I feel like he’s kind of losing out on that interaction. I believe that if I become pregnant, this problem will worsen, and my unborn child will suffer from this issue. (P22, Rheumatoid arthritis, 32 years old).
4.
Contradictory beliefs and attitudes of significant family members and clinicians about pregnancy: According to the statements made by women, having children while suffering from rheumatoid arthritis is not a simple task and is fraught with a number of potential difficulties. On the other hand, some significant people in the lives of women and health care providers were in favor of having children, while others were opposed to the idea.
4.1.
Husband’s reluctance to have offspring: The majority of women interviewed stated that their husbands consider the advantages and disadvantages of having children before deciding that they should not have any more children because the mother’s physical health is at risk. The quote of one of the women was that:
My husband interacts with me and attempts to reduce my anxiety and stress regarding the pregnancy. He desires for me to become pregnant on the condition that I am not injured. (P29, necrotizing spondylitis, 40 years old).
4.2.
Prohibition of pregnancy by clinicians: Women have said that the majority of medical professionals have advised them that they are not allowed to become pregnant because of the risks that it creates for them. One of the women raised this point of view:
Due to vasculitis, my physician prohibited pregnancy in any situation. She told me, “One kid you have is sufficient”. Pregnancy carries a significant danger. (P12, vasculitis, 38 years old).
4.3.
Relatives’ tendency towards creating offspring: Some women have stated that their families actively encourage them to have children, despite the fact that they have been diagnosed with a disease and their family members are aware of this reality. One of the women whose mother had supported her decision to become pregnant and urged her to do so related her story as follows:
My mom really wants me to have another child. She says that every child keeps a few illnesses from their mother. Honestly, I was also influenced to get pregnant again. (P26, Behcet’s disease, 37 years old).
5.
Lack of social support for fertility: Social support from the people around them, especially the parents of the couple, other family members, and their network of friends, includes emotional support, confidence in helping to take care of the child, and solutions to their worries about having a child. This was despite the fact that the majority of women did not benefit from social support to take care of their children.
5.1.
Neglecting the need to fertility by health care providers: With regard to the experiences of women, the priority of specialists is to control the disease and prevent its progression, and they do not give enough attention to the concerns of having children. One of the participants stated:
My physician seems to be of the opinion that prevention of disease progression is more important than my pregnancy at the moment…( P2, Rheumatoid arthritis, 32 years old).
5.2.
Insufficient support from healthcare providers: The women stated that the health care system and the health care providers do not have a specialized program for women who are suffering from diseases during pregnancy and after childbirth to make this period easier for them. One woman explained:
I was pregnant with twins. The physical challenges of giving birth, plus the mental and emotional demands of caring for a newborn, are bound to leave me feeling exhausted. However, the healthcare system does not offer women in the same situation as me any assistance. For instance, if I am sick, the health care provider comes to visit the kid at my house. (P5, Sjogren’s disease, 38 years old).
Women who took part in this research said that their physicians did not inquire about their intentions to have children or increase them. As a direct consequence of this, they came to the conclusion that they needed to repress this desire because they should not necessarily have the desired number of children.
I’m not asked about pregnancy by my doctor, but I used to take too many drugs. Therefore, I read that these pills and ampoules are toxic during pregnancy. I have done a lot of research on the Internet on this pill’s impact on the fetus while pregnant. One individual commented, for instance, “There is no problem,” and another replied by saying “There is a problem, which is why I am very stressed out.” These inquiries cannot be made since the healthcare professional is pressed for time. (P11, sarcoidosis, 27 years old).
5.3.
The requirement for additional support from family and husband: Women who have rheumatoid arthritis struggle with a variety of limitations and disabilities, which may cause them to require additional help from their families and husbands during pregnancy and after childbirth. If they are deprived of it, it will lead to their not intending to get pregnant. One of the women’s experiences provides insight on this topic, and it is as follows:
My mother is ill and unable to assist me, and I am without assistance for taking care of my kid. I ask myself, “How can I care for my child by myself after giving birth?” I cannot rely on anyone for assistance. (P13, rheumatoid arthritis, 35 years old).
5.4.
Misunderstanding of healthcare staff about pregnancy risks and benefits: The majority of the women noted that healthcare workers did not have accurate information regarding their condition, and the majority of the time, they did not provide clear answers to the questions that the women asked in the health sector. Because of this issue, there is a reasonable possibility that women will ignore their decision to have more children. They stated that physicians’ and caregivers’ lack of awareness is one of the most challenging aspects of living with a chronic illness. One of the women said about her experience: Some workers are ignorant about my disease in the health care system. When I explain that I have a form of rheumatic disease, the medical staff is not usually understanding. The fact that they are not aware of my medical condition is something that I struggle with a lot. (P18, Sjogren’s disease, 33 years old).
5.5.
Poor patient-provider communication during consultation about pregnancy: Many women felt that professionals did not communicate well with them when discussing their pregnancy decisions. One of them said:
The doctor’s office is so busy that they sometimes lack attention or are bored when I desire to inquire about matters other than my illness. They don’t pay much attention when it comes to pregnancy questions. Therefore, I am embarrassed to ask my questions about pregnancy in this condition. (P13, rheumatoid arthritis, 35 years old).
Table 1
Characteristics of the study participants (N = 30)
Age (years) | Participants | | 34.8 ± 5.12 | | |
Spouses | | 40.04 ± 6.03 | | |
Education | Participant | Diploma and below | | 20 | 66.67 |
Bachelor of Science | | 8 | 26.67 |
Master of Science and higher | | 2 | 6.67 |
Husband | Diploma and below | | 18 | 60 |
Bachelor of Science | | 6 | 20 |
Master of Science and higher | | 6 | 20 |
Occupation | Participant | Employee | | 2 | 6.67 |
Self-employment | | 3 | 10 |
Household | | 25 | 83.33 |
Husband | Employee | | 7 | 23.33 |
Self-employee | | 14 | 46.67 |
Laborer | | 9 | 30 |
No. of Children | 0 | | | 4 | 13.33 |
1 | | | 11 | 36.67 |
2 | | | 9 | 30 |
3 | | | 6 | 20 |
No. of Abortion | 0 | | | 18 | 60 |
1 | | | 9 | 30 |
2 | | | 3 | 10 |
Place of Interview | Public clinic | | | 16 | 53.33 |
Private office | | | 14 | 46.67 |
Table 2
Theme, categories, and subcategories emerged from the interviews
Suffering from an ambiguous disease | Individual health concerns following pregnancy | Duality of desire and fear in childbearing |
Limiting self-care in daily life |
Fear of postpartum disease recurrence |
Motherhood as an individual desire | Motherhood and womanhood perceptions |
Motherhood as an asset and opportunity to affirm womanhood |
Regret for missing the opportunity of motherhood |
Fear of congenital abnormality | Concerns about child harm |
Failure to meet the infant’s requirements |
Husband’s reluctance to have offspring | Contradictory beliefs and attitudes of significant family members and clinicians about pregnancy |
Prohibition of pregnancy by clinicians |
Relatives’ tendency towards creating offspring |
Neglecting the need to fertility by health care providers | Lack of social support for fertility |
Insufficient support of healthcare providers |
The requirement for additional support from family and husband |
Misunderstanding of healthcare staff about pregnancy risks and benefits | |
Poor patient-provider communication during consultation about pregnancy |