ABSTRACT

The vast majority of women and their partners do not think about possible difficulties with conceiving, as they believe they will easily conceive a child and become parents at a certain point in their lives. When diagnosed with “infertility,” they feel powerless and hurt. Regardless of the many tests, procedures, and approaches available to couples when they face difficulties conceiving, their journey is often lonely, and certainly deeply personal and painful.

The purpose of this article is to determine how a couple perceives or experiences the problem of infertility and to emphasize the importance of compassion, support, and understanding for the infertile couple.

It is noted that the treatment of infertility is still largely focused on the physical aspect, but emotions are just as important—something healthcare professionals often overlook while couples suffer. They face fear, shock, a sense of helplessness, and anger. At the time they need help the most, they often remain isolated because those around them still don’t know how to react to their problem. Support for all the challenges a couple faces while coping with infertility and seeking solutions is essential. For couples coming in for check-ups, counseling, tests, and treatments, the role of the midwife is very important, as much of the communication goes through her. With her knowledge and expertise, a midwife can provide the support and motivation that is a vital element of cooperation for couples in need of help.

1. INTRODUCTION

Infertility is a common problem that can affect both men and women (Cooper, 2007). It is one of the greatest hardships a person can face (Velikonja, 2005; Nevin and McLoughlin, 2009). It threatens all areas of life: self-esteem, dreams for the future, and relationships with others (Nevin and McLoughlin, 2009; Velikonja, 2005). The desire for a child can be immense (Bahovec Groznik, 2004).

The pain faced by infertile couples is unimaginable. Unlike their peers who are or will be able to be parents, infertile couples embark on a path they hadn’t previously imagined, thought about, or counted on. The feeling that they might not be able to fulfill the parental role fills couples with despair, disappointment, and emptiness (Pondelek, 2004).

Unfortunately, attention is still primarily focused on the physical aspects of infertility, while emotions are often ignored and disregarded (Velikonja, 2005). Healthcare workers focus on the body but neglect the psyche, as well as the emotional, social, and cognitive aspects of the individual (Geist et al., 1996). As a result, people suffer greatly and are left alone with their feelings (Velikonja, 2005).

Globevnik Velikonja (2007) states that counseling in the field of infertility is vital for the treatment of infertility and good diagnostics. By providing information, counseling, and therapeutic procedures, it offers patients valuable support.

The author’s purpose was to determine which psychosocial factors, in addition to physical procedures, an infertile couple must face. Through a case study, the author aims to shed light on the needs of a couple experiencing tests, infertility therapy, and psychological distress, how the couple copes with individual phases of infertility, and how stress, environmental factors, and society affect the infertile individual or couple. The purpose of the article is to highlight the supportive role of the midwife in the holistic treatment of the couple—within the experiential world of the individual/couple. The goal of the research is to gain insight into the life of an infertile couple and their coping with infertility, with the author focusing more on the dynamics of the partnership. She is interested in how partners experience infertility, the impact of infertility on their relationship and bond, how they cope with loss and stress, and how they function in everyday life. Regarding society and the environment, the author is interested in how the couple perceives social expectations.

In organizing and analyzing the material obtained in the research, the author used several codes to group similar phenomena, events, and statements under a common name, ultimately resulting in four key categories:

1. A child – an unfulfilled wish
2. Experiencing infertility – silent pain
3. Support in the fight for a child
4. A test for life

A child – an unfulfilled wish

Women can dream of becoming mothers since childhood. When they play with their dolls, they daydream about one day taking care of their own children (Lindsey and Driskill, 2013). “We never thought we wouldn’t be able to have children, nor did we imagine something like this would start until it actually happened.” Miles et al. (2009, cited in Lindsey and Driskill, 2013) found that for the women in their study undergoing infertility treatment, motherhood was seen as a biological imperative and a very important and unique life role. When this role is not fulfilled for women, distress and a sense of failure become part of their daily lives. Some women feel guilt throughout their battle with infertility. Ferland and Caron (2013, cited in Lindsey and Driskill, 2013) find that women blame themselves for not being able to give children to their husbands and wonder what they did wrong to be forced to struggle with infertility. Not only do some women blame themselves, but they may also feel pressure from their surroundings as to why they aren’t getting pregnant and taking on the role of a mother. Infertility is a major stressful experience and trial for a couple, as well as a source of recurring and chronic stress (Starc, 2008). “Him: Hmm… we tried for 2 or 3 years, and nothing happened. Her: Then his two sisters told me to make an appointment with a gynecologist. I called, made an appointment, and went. Right then they found a cyst and sent me for surgery. Then I had a gynecologist anyway, and he sent me here and there, and they saw [Her gynecologist examined her and referred her to specialists. There they also examined her and found that not everything had been removed in the uterus] that not everything had been removed. She sent me for a second opinion in Maribor, and from then on, I started going to Maribor for everything.” This is followed by stressful tests, results, treatments, hopes, disappointments, periods of despair, and great emotional and financial efforts and sacrifices (Starc, 2008). “Him: Yes, infertility is stressful, basically it’s a lot of stress, plus the expectations of those around us, mostly our own, but we don’t pay much attention to them anymore. Her: I also told myself I wouldn’t anymore.” Infertile couples are also affected by the costs of treatment, as well as the number of tests and medical treatments, confidence in the success of the treatment, and the importance of having their own child (especially the impact on women) (Abbey et al., 1992, cited in Čadež, 1997). “Him: You’re mostly excited about whether it will work this time or not. Her: You just think about it again. Him: You’re not as angry anymore and negative feelings don’t hit you as much, but you just keep thinking and quietly hoping it will be successful. Her: With the last attempt, there was more joy, then sadness, but I told myself I would persist until the end.” Partners can also be in different stages of grief and therefore unable to support each other. Each recurring period can be very stressful; the partner experiences it as a failure. The fear that their treatment will not be confidential (that healthcare workers will not maintain professional secrecy) can also be stressful (Prattke and Gass-Sternas, 1992, cited in Čadež, 1997).

Women react to infertility more emotionally and need much more time to cope with it. They are more often anxious, depressed, more likely to lose positive self-esteem, and have various psychological and sexual problems (Prattke and Gass-Sternas, 1992, cited in Čadež, 1997). They are more frequently haunted by feelings of guilt and anger, and they isolate themselves and feel frustrated more often (Prattke and Gass-Sternas, 1992, cited in Čadež, 1997). Women also feel social pressures more intensely; for example, they more often feel they will lose standing with their relatives and their partner’s parents if they fail to give birth to a child. They are much more involved in infertility treatment (and are more cooperative). They spend a huge amount of time on diagnostics, medication, and surgical treatment, while men spend significantly less (Abbey et al., 1992; Prattke and Gass-Sternas, 1992, cited in Čadež, 1997).

Experiencing infertility – silent pain

Partners often react differently to a diagnosis of infertility, which means each copes with it in their own way (Ponjaert-Kristoffersen and Beatens, 1999). Each processes the events separately, so it often happens that they are no longer in sync. One partner may process a certain distress while the other does not, leading to problems in the relationship (Diamond et al., 1999). At this point, advice from an experienced third party can be of great help. A conversation can also clarify what ideas each partner associates with the desire for a child and what it would mean for their relationship if it remains unfulfilled in the future (Lanbein, 2007). Infertility places the couple in a painful experience of being different (Bevc, 2002).

Facing infertility initially means shock for the affected individual, followed by feelings of anger, pain, hurt, disappointment, guilt, sadness, and despair (Bercko, 2010). “Him: At first it was a shock, oh, then anger, sadness, disappointment. Her: Yes, mostly sadness. Him: Well, you are disappointed, yes, and you’re not exactly indifferent.” This includes procedures for conceiving a child that are impersonal, expensive, unnatural, and carefully controlled by others (Lindsey and Driskill, 2013). One of the participants in the study wrote: “I became so tired of being poked, prodded, and examined under a microscope. And so many painful procedures—it was all so barbaric, really. I felt like an experiment.” Sadness can continue and recur unexpectedly, and these women must have support when they encounter pain and sadness throughout the journey (Lindsey and Driskill, 2013). Infertility treatment procedures are emotionally demanding and stressful for both partners, requiring a lot of time; for the woman, significant physical pain may also be present (Bercko, 2010). “Him: During all these procedures, it’s hard for you. Her: You want something to come out of it. It’s hard when you have to go to Maribor over and over again. Him: So the burden is that you have to keep going on and on. Her: I don’t know. We said we’d go to the end, and then we’ll see how it goes.” Patients highlight long waiting times and lengthy diagnostics as the most disturbing factors in the treatment process (Bercko, 2010). During the treatment phase, emotional fluctuations occur—hope at the beginning of treatment, disappointment and grieving when a cycle fails (Velikonja, 2005). “Him: As I mentioned, at the beginning it’s quite hard, you can’t come to terms with it quickly. Her: Hmm… for me, the first attempt hurt the most; I didn’t recover for a long, long time after that. With the second one, I didn’t even have a cell. When I heard that, I felt like crying. This last time, it was already more cheerful if everything looked okay on the ultrasound, but then everything wasn’t okay. Even then, I didn’t give up, but I told myself I’m moving forward.”

Individuals rarely talk about their fertility problems with people outside their closest circle, and difficulties conceiving also affect relationships in their social network and the relationship between the partners (Bercko, 2010). “Our relationship with those closest to us hasn’t changed. We first told our parents about the problem. Parents are kind of in first place so they can help you. They weren’t disappointed. They told us to keep going. Him: Maybe they just looked at us a bit differently at the beginning, but not anymore (they didn’t feel excluded).” Friends and relatives often find it difficult to offer support, perhaps due to their lack of knowledge about infertility issues, and may unintentionally make unhelpful or insensitive remarks (Walker, 1997). Many therefore withdraw into isolation to avoid situations that would remind them of their infertility. Due to the belief that only those experiencing the same thing can understand them, many infertile men and women only befriend people facing the same problem or seek support in self-help groups (Bercko, 2010). Self-help groups have special value, but they seem to be insufficiently known in the community, which was also confirmed in the author’s research. “Both: No, we haven’t heard of these groups.” Self-help groups provide opportunities for personal insight, facing internal conflicts, forming a positive self-image, professional support, and education (Geist et al., 1996).

Support in the fight for a child

Human development is extremely sensitive in all periods of a person’s life. It is particularly sensitive during the reproductive period, when all physical and psychological needs of a couple must be met to the greatest extent possible. A midwife can be the one who provides great support to an infertile couple, who can prevent the possible onset of depression or at least reduce the severity of the occurrence, because due to the above and the contacts during the preparation for treatment, she is the person who knows their psychosocial state well (Ryan, 1997). “Him: I think a midwife would be very welcome here, as she has a lot of knowledge about this and is closest to the situation and understands everything better. Her: I completely agree with him. Him: Because at the beginning, when we came home, we could only go look on the internet and search for all these words we heard and didn’t understand yet, and there they only write abbreviations and abbreviations.” Therefore, in the presence of an infertile couple, we must speak in a language they understand and provide the necessary and desired information, which was also confirmed in the author’s research. This way, the couple will feel included in the treatment process (Ryan, 1997).

Midwifery care needs to be focused on psychosocial understanding, meaning that the midwife must know and understand the stage of infertility and provide support to the couple facing it, from diagnosis through treatment to the goal (Schoener and Krysa, 1996). “Him: But then they would have to work in a way that there was mutual trust. That midwife who met you at the beginning would be with you most of the time and also have some conversations with you. To be available to you if you needed her and had any questions (something like this now). Then couples would trust, not that one time it’s one person, the next time not, the next time someone else, etc.; that wouldn’t work and they wouldn’t trust.” In these circumstances, the midwife should spend the most time with the couple. She would receive the couple at the beginning and meet with them throughout their entire treatment. In this way, an interpersonal relationship would develop between the midwife and the couple, on which the entire further process would be based. It is important that trust develops between the couple and the midwife.

The framework of the midwife’s work is to ensure a kind of positive attitude as well as to help with necessary interventions. A couple facing the problem of infertility and involved in advanced reproductive technologies goes through all stages of the process: regret, hope, and relief (Schoener and Krysa, 1996). The work of a midwife with an infertile couple in such a case differs significantly from work in other institutions and clinics. Her work requires a lot of time, knowledge, skills, and careful planning (Andonova, 2003).

Midwives must be familiar with the problems faced by women with infertility. Not only do they encounter the pressure of their biological and emotional experiences, but they also deal with the views that society and people important to them have of them. A midwife caring for these women must be familiar with their issues and have the ability to recognize those women who are at greater risk of facing distress on their journey through infertility and to reduce the amount of stress they experience. Midwives can provide encouragement and make recommendations for counseling during infertility treatment and after treatment has ended (Lindsey and Driskill, 2013).

Ferland and Caron (2013, cited in Lindsey and Driskill, 2013) provided recommendations on what to say or do and what not to do when caring for a woman experiencing or who has experienced infertility. Participants in the study who remained childless stated which words from healthcare professionals hurt them the most: “It will happen, don’t worry. Maybe you’re trying too hard. If you stop thinking about it, maybe it will happen. Maybe you’re not meant to be a mother or have children. Worse things can happen than this.” They also gave some practical advice for healthcare professionals and friends on what to do to help couples cope with infertility. They suggested saying things like: “I’m sorry you’re going through this. I’m here for you if you want to talk. How can I help you?”

Communication is of great importance for the entire healthcare team. For an infertile couple, the ability to listen and the ability to talk are important. An infertile couple should be cared for by the same staff, which would significantly reduce their psychological effort in establishing new communication ties (Čadež, 1997). No matter how sophisticated infertility diagnosis and treatment techniques are, the human factor plays the main role in the entire process. Study results showed that the main needs of couples undergoing IVF treatment are sufficient and appropriately provided information and emotional support. They believe that medical staff play an exceptional role in this (Milne, 1988; Connolly et al., 1993, cited in Čadež, 1997). “Him: I would like more information in case you don’t succeed. Her: I think so too. You’re just one of the couples and a number and that’s it. They just tell you it didn’t work and you can go home. Her: Then you ask why it didn’t work and you get the answer that they don’t know right now either, and you don’t know why it wasn’t successful anyway. This changing and attitude, ugh.”

Among the many procedures, emotional or psychological support is not provided (Fister, 2011).” The couple sought support but received no form of support from the institution, even though Fister (2011) says that psychological support and counseling in the case of infertility are necessary throughout; it starts even before the beginning of clinical treatment and ideally lasts throughout the treatment, and can also continue after completion, depending on needs. “Him: Not that strict psychological help, no, we would welcome support from caring staff more, so it would be more personal, like for example now when we’re sitting here together and talking, because you don’t understand a lot of everything there. You’re with the doctor for those 5 minutes for them to explain quickly. Then you go home and think about what they even told you and many more questions run through your head. Her: That’s why I often take you along, so you remember more of what I don’t (she turns to her partner and tells him).” No one even mentions possible changes in experience and emotion. The staff is focused only on enabling conception. Medical intervention in this area strongly affects the individual and the couple, but no one deals with this. Couples facing infertility are most often sent for IVF procedures, where, in addition to other shortcomings and ethical controversies, there is also too little concern for support and help in dealing with the emotional and psychological consequences of such an experience. Therefore, stress, despair, and isolation, which are often associated with infertility treatment, are inhibitory factors in reproductive medicine, as they can increase an individual’s infertility (Kastelic, 2012; Nevin and McLoughlin, 2009).

A test for life

Miles et al. (2009, cited in Lindsey and Driskill, 2013) said that many emotions are associated with loss in infertility; many women grieve for their unborn child. Unruh and McGrath (1985, cited in Lindsey and Driskill, 2013) find that women who experienced infertility created fantasies about the child and their life with the child. When these expectations do not materialize, the result is the loss of their hopes and dreams, which manifests as great sadness. Ferland and Caron (2013, cited in Lindsey and Driskill, 2013) wrote that women in their study grieved when they heard comments like “how much children look like their mothers” and then realized that this would never be said to them or about their children. This loss does not end only in the years when women are trying to conceive. Women in menopause who have experienced infertility also suffer sadness when their friends become grandfathers and grandmothers and they do not.

Infertility often negatively affects an individual’s quality of life. The effects of infertility are usually seen in emotional, physical, social, sexual, work, and family areas, as well as in leisure and finances (Onat and Beji, 2012, cited in Sirk, 2013). The longer individuals face infertility and treatment, the more they feel the psychological and social consequences and begin to think about themselves in a different way (Diamond et al., 1999). Although the problem of infertility is common, they feel as if they are alone. Infertile couples often believe that people who haven’t faced infertility cannot understand their pain (Ponjaert-Kristoffersen and Beatens, 1999). “Him: That’s true, yes, it’s probably hard for them to understand all this. We have a few couples we met there, and we look at these matters completely differently than others to whom this hasn’t happened. For them, having a child is a given. No one thinks about it until it happens. Most people live like that. Her: Yes, they think everything will happen eventually.” Infertility represents a taboo topic that they cannot talk about freely with family and friends. The couple must decide how openly they will speak about infertility in society. It is very stressful when one partner wants to speak about the problem and the other does not (Sarasohn Glazer and Lewis Cooper, 1988, cited in Sirk, 2013). “Him: Before, we never thought about talking about it in social circles, but now it’s no longer a problem for us to talk about it; at the beginning, it was hard, at least for me. Her: For me too. Now, after all these years, we’ve gotten used to it. Him: We see more people with a similar problem and we know a few more well-known ones. Then it’s a bit easier for you when you see you’re not alone.” It often happens that a couple neglects relationships with other people because they are occupied with infertility and treatment (Diamond et al., 1999). “Him: We don’t neglect people because of it. Her: We still find time for ourselves and for others too. They understand us when we have our obligations. Then they know, for example, that we can’t go here or there if we’re in Maribor. Him: We can’t think about it all the time anyway, and it keeps you busy.” Infertility usually puts the relationship between partners to the test (Sarasohn Glazer and Lewis Cooper, 1988, cited in Sirk, 2013). Onat and Beji (2012, cited in Sirk, 2013) say that the impact of infertility on the partnership and quality of life depends on communication between the partners, ways of coping with problems, and mutual trust. Most partnerships survive the experience of infertility; the partners become closer and their relationship is strengthened (Sarasohn Glazer and Lewis Cooper, 1988; Schmidt, 2010, cited in Sirk, 2013). “Him: I don’t feel like our relationship was on trial, not really. We held together even more then. Her: We helped each other, though he helped me more. Him: The situation we’re in didn’t affect our communication at all; we trusted each other even more. We sought support in each other (the partner nodded her head). In these difficult moments, we are even more connected. Her: He always helps me. When I come home from procedures and I’m sad, he’s always by my side.” Some couples are brought closer by shared pain, others are separated (Raphael-Leff, 2003, cited in Sirk, 2013). “Him: I didn’t even think in that direction.” In the author’s case, the experience connected the couple as they had a common goal before them. The interviewed couple did not allow infertility to dictate their lives.

Those who would otherwise come to terms with the fact that they cannot have children are repeatedly under pressure to try a new, latest method that might lead to a child. It is about general expectations (of society, family, herself) that she will after all do everything to get a child, as this is (perhaps) her “highest goal and meaning of life.” Perhaps this pressure explains why some women go through tests and medical procedures that can be time-consuming, painful, and often humiliating, just to have a child (Drglin, 2002). Refusing treatment, however, translates into the opinion of those around them that the couple actually wants to be childless and therefore their infertility is not a real “disease” for which they would deserve compassion and support (Bercko, 2010). For a comprehensive understanding of coping with infertility, it is therefore, in my opinion, important to understand the social view of infertility (Sirk, 2013).

DISCUSSION

After the initial shock that accompanies the discovery of one’s own or a partner’s infertility, various feelings are triggered in the individual, ranging from anger through hurt, disappointment, sadness, and despair to feelings of inferiority, incompetence, loss of self-respect, or even unsuitability for parenthood (Štular, 1999, cited in Bercko, 2010).

Infertility itself, even without diagnostic therapy procedures, puts a couple in a stressful situation. All diagnostic and therapeutic interventions represent additional stress, both psychological and physical. However, individuals accept treatment procedures very differently. Some couples see the introduction of treatment as a positive incentive, while others experience treatment as extremely burdensome and exhausting. Unfortunately, infertility cannot always be cured. Of course, the success of treatment depends on the causes of infertility (Mauer, 2004). Tests can be expensive and time-consuming, and they don’t always provide a useful answer. When it comes to issues related to reproductive health, the desire for a child can be the strongest human emotion (Vlaisavljević, 2011). For many infertile couples, in vitro fertilization has enabled them to realize their dreams of a family (Hamberger and Nilsson, 2007).

Seeking a medical solution to the problem of infertility is only one of the options available, but there are others: denial of the problem, adoption, changing partners, a new job, moving, a long vacation, or mourning the lost parent-child relationship. The choice of option is conditioned by social factors such as class, gender, race, age, marital status, education, etc. However, none of these social factors are mentioned in discussions about what the actual needs of the infertile are. There is also no evidence that those who choose medical help want a child more desperately than others who choose other options. The only difference is that the former decided to seek a specific medical solution for their infertility. At the same time, it is not necessary that everyone will make the same decisions in the medical procedures available or that they will uniformly follow doctors’ instructions. Men and women have clearly set boundaries they will not cross. Some do not want insemination with donor sperm, others reject in vitro fertilization, and others refuse adoption. These extremes do not mean that for some people the motive for parenthood is not strong enough (Pfeffer, 1987, cited in Bercko 2010).

Couples who went through treatment experienced a life change, both physical and emotional, a sense of helplessness, and a loss of control over their own lives. Hope and disappointment contributed to feelings of isolation, jealousy, and sadness, which changed their relationship both with their partner and with others (Nevin and McLoughlin, 2009).

They need to be provided with counseling that covers all related medical, psychological, and social issues. Questions also arise as to which form of counseling and support is most appropriate and welcome. Some believe that professional psychotherapy is not the most appropriate; support from caring staff who have a wide range of professional knowledge is more welcome (Čadež, 1997). The author sees a significant role for the midwife here. They have knowledge of psychology, embryology, midwifery, and gynecology to acquire additional knowledge and help couples in distress when they “come for an infertility diagnosis.” Only a midwife who is first happy, satisfied, and successful as an individual will be able to cope with all the difficult professional tasks and the mission

she performs. Recognizing distress in an infertile couple is an extremely difficult task, as it requires a lot of knowledge, dedication, and time. Support for all the challenges a couple faces while coping with infertility and seeking solutions is essential.

CONCLUSION

Facing infertility initially means a great shock for the affected individual or couple. Almost no one is prepared for a diagnosis of infertility; they don’t think about it in advance; for the most part, we all take it for granted that we will become parents at a certain point in our lives and conceive a child without problems.

Regardless of the many tests, procedures, and approaches available to couples when they face difficulties conceiving, their journey is often lonely, and certainly deeply personal and painful. They face shock, fear, a sense of helplessness, and anger. They are faced with a severe trial, and many relationships break up. At the time they need help the most, they often remain isolated because those around them still often don’t know how to react. It is important what messages from the environment, family, friends, relatives, etc., and especially healthcare professionals, reach such couples. Although everything is still quite focused on the medical aspect of infertility, emotions are very important, and we largely do not respond to them.

During the treatment of the couple, the midwife takes care of the documentation, schedules appointments, and looks after their well-being. She represents a kind of link between the couple being treated for infertility and the treating physician in the infertility clinic. The midwife plays an important role in fulfilling the wishes of infertile couples, as she accompanies them from the first phone conversation, examination, and consultation in the clinic through all the tests and the final procedure of medically assisted reproduction. Quality performance requires knowledge, understanding, and skills. Midwives must have good knowledge and understanding of reproductive endocrinology (Muršič, 2008).

A midwife could function well in the field of infertility. For couples coming in for check-ups, counseling, tests, and treatments, the role of the midwife is very important, as much of the communication goes through her. It is important that she knows how to use an appropriate way of communication for good interpersonal relationships. At the first contact with the couple, it is important that she takes enough time and talks to them. In this way, she will slowly get to know them and will then more easily detect any problem and consequently recognize different behavior, non-verbal signs, or perhaps emotional distress. This way, she will be able to react in time and find appropriate help for them. In her work, she must use all acquired knowledge and skills. With her knowledge and expertise, a midwife can provide support and motivation, which is an important element of cooperation for couples in need of help. Conversation can alleviate the distress they suffer due to infertility and cannot manage on their own. It is important that we give couples consideration and respect, that we communicate with them in an appropriate language, trust them, encourage them, and that they know they are not alone in all of this. Sometimes a warm and understanding word is enough.

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