Investigating the Problems and Needs of Infertile Patients Referring to Assisted Reproduction Centers: A Review Study

Introduction

Infertility is considered as a state wherein pregnancy does not occur in women after 12 months of regular and unprotected sex (1). The prevalence of primary infertility has been reported to be within 10-12% across the world. Moreover, the total fertility rate and the number of children are on a declining trend worldwide (2). Based on a study conducted by Akhondi et al. (3), the prevalence of primary infertility is 20.2% in Iran that is almost double the global statistics. There are also many acquired and environmental factors leading to infertility (4). The inability to conceive is usually accompanied by depression, sexual problems, and work-related challenges.

Infertility can also have significant effects on the health status of the couples and their marital relationships, followed by mental imbalance and ultimately divorce (5). Over the past 25 years, assisted reproductive methods have been developed in parallel with the breakthroughs in other sciences (6). Undergoing Assisted Reproductive Technologies (ARTs) may be a shocking experience for the patients. Such technologies often seem confidential, isolating, and physically and emotionally painful (7). Considering the progressive speed of the ARTs, these technologies have imposed numerous challenges on the professional members of the healthcare teams, and also developed the nurses’ roles. Therefore, in the rapidly progressive environment of the ARTs, the nurses need to update themselves with the latest technologies (7).

Moreover, the professionals must understand the problems of individuals involved in this domain and update their own information (8). Monitoring and ensuring the quality of care delivered to the patients by the healthcare teams are the duties assigned to the nurses (7). In a review study, Allan suggested that patients in the infertility centers expected kindness, comfort, ability to communicate, time qualifications, specific knowledge, technical skills, and efficiency from the nurses (9). Since the emergence of the ARTs, the nurses have also played a very important and strategic role in caring the women undergoing infertility treatments (10).

A review of the studies conducted domestically and internationally illustrated a wide range of problems and needs in the infertile patients (11, 13). However, no review study has been conducted to investigate the problems and needs of these patients yet. The provision of optimal client-centered care is the main goal of nursing, the fulfillment of which is achieved by the identification of the patients’ problems and needs and provision of care based on such information. Regarding this, the present study was conducted with the aim of investigating the problems and needs of the infertile patients referring to the assisted reproduction centers using the traditional review technique. The findings of the current study can be helpful to be used as a basis for the formulation of care in line with the patients’ problems and needs.

Methods

This conventional review was conducted based on the traditional review process developed by Cronin et al. (2008). According to this model, a traditional review consists of five steps including: 1) choosing the topic of the review, 2) searching the manuscripts, 3) collecting, reading, and analyzing the texts, 4) writing a review, and 5) providing references (14).

Step 1: Choosing the topic of the review

As a rule, it is better to choose a focused topic for the review, and then make it broader if needed (14). Since the prevalence of infertility in Iran is higher than its global rate (3) and regarding the fact that the provision of optimal care without attention to clients’ problems and needs is not possible, the topic of this review was the investigation of the infertile patients’ problems and needs to provide better services in this domain. The databases used in the present study included Google Scholar, PubMed, Science Direct, Ovid, and Cochran.

Step 2: Searching the manuscripts

This step was related to searching the common methods for identifying the most relevant literature (14). In this study, the searching process was conducted using the following keywords (used both separately and in combination): “assisted reproductive nurses and infertility”, “infertile patients’ problems or needs”, “assisted reproductive technologies and infertility”, “quality of life and infertility”, “infertility nursing”, “assisted reproductive technologies”, “infertility problems”, “patient-centered care”, “infertility care”, and “quality of life”. The maximum time framework for searching the articles was within 5-10 years (14). In this study, the articles published between 2003 and 2017 were included.

Step 3: Analyzing and synthesizing the texts

This step involved collecting and reading the suitable texts. After the initial reading, the texts were reread with a critical review. It was also useful to write a summary of each article in the language of the researcher while taking the strengths and weaknesses of the article into account (14). The articles written in the Persian and English languages containing the given keywords were included in the study. If any findings associated with the “problems and needs” in patients were cited in all the checked articles, they were included in the review within one of the sub-categories of problems or needs; otherwise, the study was excluded.

At the first step of searching, a total of 350 articles (in English and Persian) containing one of the given keywords were obtained.

After examining the titles of the studies, 65 articles had at least two keywords considered by the researcher. After reading the summary of these 65 articles, 40 articles related to the topic of interest were selected. After reading the full texts of these papers, 25 articles were selected and 6 studies were added through snowball sampling method from the references of these 25 articles. Finally, 31 articles were investigated and summarized. The process of screening the retrieved articles is illustrated in Figure 1.

Step 4: Writing a review

After completing the critical study of the texts, it should be decided how to structure and write a review. The content should be organized objectively, and the review structure should maintain its integrity. In general, all review reports should include introduction, body, and conclusion (14). Based on the purpose of the study and the obtained results, the body of the article was divided into two general domains of problems and needs in the infertile patients. First of all, the infertile clients’ problems were categorized into mental-psychological, social, marital, and financial domains. Subsequently, the clients’ needs were grouped in physical, care, informational, financial, mental-psychological, and spiritual dimensions, which would be discussed in detail in the ‘findings’ section.

Figure 1. Screening of the retrieved articles

Step 5: Providing references

The review of the texts should include a complete list of all books, journals, reports, and other cases mentioned (14). In this study, it was attempted to list the references accordingly.

Results

The purpose of this study was to investigate the literature to identify and evaluate the problems and needs of the infertile patients from their own perspectives. Based on the findings of the reviewed texts, the problems of the infertile patients could be categorized into mental-psychological, emotional, social, marital, and financial domains, which are described below. The reviewed articles are summarized in Table 1.

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IVF: In vitro fertilization, ART: assisted reproductive technology

Mental-psychological and Emotional Problems

According to the findings of various studies, the mental-psychological and emotional problems of the infertile patients are partly due to the nature of infertility as well as the outcome of undergoing different infertility treatments and failures in this respect. The mental and emotional problems of the infertile patients included fear, despair, continuing mental conflicts about infertility, negative self-perception (15), helplessness (16), stress (17), poor psychological adjustment (18), lack of emotional adjustment (19), low self-esteem (20), and a sense of incompleteness (21).

Moreover, stress sources included concerns about treatment complications, costs, number of eggs extracted, ability of spouse to produce sperms (22), as well as low support provided by family or marriage partner (18). Anxiety and depression during and after treatment in clients with a history of depression (17) can also occur followed by treatment failure (23). Anxiety and depression caused by infertility can be similarly considered as risk factors for emotional problems in men and women during and after treatments (24).

Social Problems

The infertile patients also experienced social problems caused by infertility (21). These problem included communicational problems, social isolation, social pressures (15), social concerns related to infertility (25), and social tension (17). Furthermore, the reviewed studies showed that 1.3% of the infertile women and their spouses were at risk of not having social support (16).

Marital Problems

Infertility is accompanied by numerous marital problems, including divorce and spouse’s remarriage (26), changes in marital relationships (21), sexual problems (15), sexual concerns (25), and marital conflicts (17). This problem can also lead to reduced sexual desire, especially in males (20, 27).

Financial Problems

The costs of infertility diagnosis and treatment methods are one of the important challenges faced by the patients (11). The investigation of the infertile patients’ experiences regarding the financial problems demonstrated that 55% of the infertile individuals had encountered financial crises (28). Accordingly, 47% of these individuals had financial problems, and 64% of them spent costs more than their income for infertility treatments (29). The average cost of in vitro fertilization treatment in China was also estimated by $4000 that was more than the household income (30).

Considering the high costs spent in this respect, the patients cannot sometimes get the desirable treatment outcomes and lose all their money (11). Moreover, 78% of the patients pay for all medical expenses by themselves (31). In a study conducted in Iran and Turkey, 33.9% and 41% of the Iranian and Turkish patients had failed in the ARTs, respectively, due to financial problems and refusal to continue such treatments (32). Based on the attitudes of the infertile couples, 80% of them had problems with paying their medical costs (33).

In addition to negative effects of financial problems on couples’ relationships, these problems were directly correlated with physical ones in these individuals (34). The second purpose of this study was to identify the needs and expectations of the infertile patients. Studies in this respect shed light on a wide range of needs among these individuals (11, 12, 35). In this regard, the findings regarding the infertile clients’ needs can facilitate the provision of better services for this group. In general, the patients’ needs were grouped into six domains, namely care, informational, financial, mental-psychological, physical, and spiritual factors.

Care Needs

Based on the results of the retrieved studies, care needs of the infertile patients were divided into two parts: 1) access to care and 2) care continuity and coordination. In this respect, access to care means opportunity to establish relationships with medical teams (36), free and unlimited access to medical documents, and awareness of the issues that the clients should know (e.g., calling whom during holidays in case of emergencies) (12). Furthermore, care continuity and coordination refers to receiving integrated (inconsistent) information from the medical teams (12) and visits by doctors during the course of treatment (12, 30, 36). Care continuity and coordination as well as access to care are among the two important dimensions of the ten dimensions of care according to Dancet (37).

Informational Needs

The presentation of information was found to be considered as the most important priority among the patients (35). Accordingly, the investigation of informational needs among the patients was one of the significant goals in the patient-centered care. Lack of providing information about the support services was also considered as one of the noticeable weaknesses within the fertility care (12).

The clients’ informational needs in this study were categorized as follows:

1. Presentation of infertility-related information: It included the provision of a definition for infertility, difference between sterility and infertility, physiological signs of egg placement (38), information about causes of infertility (38, 39), discussions about effects of infertility on couples (36), and information about effective fertility methods (39).
2. Presentation of information about the diagnostic and therapeutic procedures: It was comprised of treatment process (11), treatment schedule (40), theraputic decision-making (25), new treatment methods (41), treatment success rate (11, 42), a clear plan for the future (36), information on the amount of blood loss during treatment, as well as information on the quality and extent of embryo, eggs, and semen (40). Moreover, the patients needed to provide information about the financial, legal (making decisions about the therapeutic methods as well as knowledge regarding the rules of gaining information about embryo, uterus, and egg donors), family, sexual, and marital counseling (11).
3. Presentation of information about medications: It covered the type of medications and how to keep them (11), consumption methods for medicines (40), injection methods for   hormonal medications (12, 42), and complications of the given medicines (12, 36, 42).

Financial Needs

The financial needs of the infertile patients were comprised of two parts, including diagnostic-therapeutic costs and lack of adequate insurance coverage. It should be noted that low success rate and non-achievement of desirable outcomes (11) had made the infertile patients to use financial support by the governmental and non-governmental centers. In some countries, there is no proper insurance coverage for the infertility treatments (21). Moreover, most of the companies consider infertility as a situation rather than insurance (32). Therefore, the patients should be supported by the governmental and non-governmental centers, which requires the expansion of medical insurance targeting toward helping the infertile individuals (11).

Mental-psychological Needs

One third of the infertile patients are at risk of emotional discomfort (19). Stress reduction and emotional support provision were among the important psychological needs in the patients (22). Moreover, the infertile clients were willing to talk with social workers, psychologists (36), and medical teams (20), and establish appropriate communications and interactions with the given teams (27, 35, 43).

Additionally, the infertile patients needed to receive support from the important people in their life (44), have their spouses’ mutual understanding and collaboration during the course of treatment (11), and enjoy improved relationships with their sexual partners (42). It should be noted that supports provided by sexual partners could help in relieving and mitigating the effects and consequences of infertility (18).

Physical Needs

Physical needs in the infertile patients included the facilitation of physical comfort (35), preparation of patients for diagnostic and therapeutic procedures (27), and provision of a private room for the collection of semen samples (12).

Spiritual Needs

Before and after the treatment courses, the infertile patients required the presence of a religious adviser for calming them down. Furthermore, they needed a higher power to invoke assistance from and communicate with (11). The remarkable point about the spiritual needs of the infertile patients was that attention to spiritual issues was also of importance in the non-Islamic cultures. The results of a study carried out by Latifnejad and Allan on the Muslim and Christian infertile women in the assisted reproduction centers of Iran and England revealed that the religious infertile women considered infertility as a rich experience for achieving spiritual growth.

According to these women’s viewpoint, infertility was not just an attempt to have a child but a life-like experience which could strengthen their faith in God. In the mentioned study, the positive adjustment mechanisms were reported to be participation in religious ceremonies, belief in miracles, as well as supports by clergymen and religious individuals (45).

Discussion

The purpose of this study was to identify the problems and needs of the infertile patients through a review study. Based on the literature review and categorization of the results, the patients’ problems were grouped into four general domains of mental-psychological, emotional, social, marital, and financial factors. In addition, their needs were placed into six categories of care, financial, mental-psychological, physical, and spiritual domains. Furthermore, it was revealed that infertility could almost influence all aspects of an individual’s life.

As the literature review indicated, mental-psychological and emotional problems were among the most common problems in the infertile patients. In a study conducted by Sharma, stress reduction as an important psychological need in the patients could lead to a sense of trust and satisfaction in the patients, and also facilitated the treatment process (46). Other mental-psychological problems in the infertile patients were lack of emotional and mental supports by the medical teams. In this respect, one of the complaints about the medical teams was their inappropriate behaviors (46).

Emotional support and patient anxiety were similarly included among the dimensions of patient-centered care that were addressed through contacts with others and emotional supports from the medical staff (13). Among the other interventions targeted toward the reduction of mental-psychological problems were those that could be established in different familial and social domains as well as medical contexts, helping the patients fulfill this process with fewer emotional problems.

Other mental needs in the infertile individuals were interest in patients as a person and the psychological effects of infertility on men (47). In a study performed by Zandi et al. (2013) based on the experiences of the surrogate mothers, one of the important needs among these women was having someone to rely on (i.e., spiritual support, spousal support, support by family and friends, and support by peers). Accordingly, the assisted reproduction centers can make use of methods such as helping to make informed choices and managing mutual relationships in third party assisted infertility technologies in order to facilitate the process of motherhood for the surrogate women (48).

The treatment team can meet the emotional needs of the patients through listening to them (27), planning to get professional assistance (19), paying respect to their values (43), and accompanying patients at the time of embryo transfer by nurses. The patients’ experiences also demonstrated that they had considered receiving information from nurses and medical teams as representative of care behavior and a support dimension (10). Regarding this, supports by the medical team seemed to be of utmost importance since only 23% of the patients were receiving support by the medical staff (36).

Since infertility and use of the ARTs are taboos in Iran and families try to hide it (49, 50), the use of support sources, such as the utilization of the Internet allowing people to hide their identity and access to peer information, can moderate tensions and anxieties to some extent. Therefore, designing educational sites wherein the patients can interact with each other and with the medical team can be a source of information and support for these people.

A sense of social exclusion and deprivation from the relatives as well as reduced social interactions with friends were among the social problems faced by the infertile couples (51). The existing cultural barriers in a society, including lack of cultural awareness about some third-party ATRs (e.g., surrogacy) and negative attitudes towards this type of ART (52), were among the important social issues that had been less addressed.

The inadequacy of the services provided by the assisted reproduction centers was among the other social problems faced by the infertile couples. These inadequacies included failure to provide suitable facilities, malfunction to give information, and insult to clients by the healthcare workers (48). Consequently, the provision of correct and adequate information to the patients and protection of their privacy in the treatment contexts were among the important considerations reducing social problems in the patients and should be taken into account during care provision.

Furthermore, divorce and spouse’s remarriage were among the important issues that could lead to family breakdown if there were no proper interventions. The factors affecting divorce included husband’s decision to remarry and pressure from relatives for remarriage. Repeated treatments could also affect the instability of marriage and decision to divorce (51). In this regard, the provision of family counseling, awareness, and suitable information for couples in this domain can contribute to effective coping with this problem. Moreover, appropriate family counseling can sometimes prevent the family breakdown and help the couples achieve peace.

Given the rise in infertility rate and the use of the ARTs, attention to financial support and insurance coverage were among the significant issues that should be met in the infertile patients (33). In addition, expensive medications and lack of access to some foreign medicines due to sanctions on Iran had also made the infertile couples to seek for financial governmental support.

Furthermore, giving grants to the infertile patients was among the main strategies to meet such financial needs. According to the answers of the study participants (i.e., infertile patients, physicians, lawyers, and the public), the given allowance should cover 15-25% of the costs (33). Moreover, it seemed that the effective strategy to tackle this problem was making more attempts by the medical teams and health policy-makers in order to expand insurance coverage in terms of diagnostic and theraputic treatments for infertility.

Moreover, access to care is one of the aspects of patient-centered care. This aspect included the timely completion of visits and treatments by the patients, reduced waiting times, and continuation of treatment phases. The patients’ long distance from the assisted reproduction centers and financial costs were two factors affecting access to care (53). Lack of care coordination was also one of the factors affecting the negative experiences of the infertile patients. The care needs entailed the devotion of enough time to talk with patients as well as patient participation in the selection of treatment methods (47) that were in line with the results of the present review study. 

One of the important needs indicated in the majority of the reviewed studies by the patients was informational needs. The negative experiences of the infertile couples undergoing intrauterine insemination were caused by the non-provision of information about surrogacy treatment methods and its complications, therapeutic schedule, and success rate by the medical staff (47). One of the aspects of patient-centered care includes the provision of such information as presentation of written information and provision of information about the emotional aspects of fertility treatment and the way patients can help themselves (13).

Since the infertile women trying to get pregnant are prone to physical problems and pains, relieving such pains and providing physical comfort were among the demands of this group (54). Painful treatments were also among the factors reducing hope in the infertile women undergoing treatments with a history of failed treatments, which could highlight the importance of creating physical comfort (13). Physical comfort, including the location of infertility clinic and a separate clinic for the infertile patients, was another physical need in the infertile patients (13).

Physical needs were also among the needs directly stressing the provision of services by the healthcare teams, especially nurses. This was considered as one of the important strategic points that could be manipulated by the healthcare staff and nurses to meet the clients’ needs, which could be accommodated through providing desirable care.

Spiritual needs were also among the other demands highlighted by the patients that received little consideration in the given studies and the care-related issues. Consequently, there is a need to give more attention to care. Spiritual sources, such as saying prayers, going to holy places, and blessings of the family, were among the promising factors affecting the infertile women with a history of treatment failure (55). In a qualitative study conducted by Romeiro et al. (2017), spirituality was mentioned as a source to cope with infertility problems. This domain included the use of religious strategies (e.g., saying prayers and going to holy places) (56).

Implications for Practice

The investigation of the patients’ needs and problems can facilitate the identification of strategic points targeted toward the implementation of effective interventions. It also allows for the provision of patient-centered infertility care, which is accompanied by better quality of life and lower stress during the course of treatment. According to the findings of the retrieved articles, mental-psychological, emotional, and care factors were the important problems and needs among the infertile patients. In this regard, the nurses have the ability and potential to provide a direct and effective intervention through supplying mental-psychological support and physical care. Therefore, training the staff on the way of supporting these patients would be of great help to mitigate the given problems and meet their own needs.

Acknowledgments

This study was derived from a thesis submitted to the School of Nursing and Midwifery at Shahid Beheshti University of Medical Sciences in partial fulfillment of a Master’s thesis in nursing (IR.SBMU.PHNM.1395.390). Hereby, we express our gratitude to the Research Deputy of the School of Nursing and Midwifery at Shahid Beheshti University of Medical Sciences for their contribution to this study.

Conflicts of Interest

There was no conflict of interest.