Exploration of the counseling needs of infertile couples: A qualitative study.

BACKGROUND: Identification of the main needs of infertile patients is essential to provision of appropriate supportive services and care based on their needs. Thus, the present study aims to explore infertile couples' counseling needs.
MATERIALS AND METHODS: This study was carried out with an inductive qualitative content analysis approach during 2012-2013. The participants of this study included 26 Iranian infertile couples and 7 medical personnel (3 gynecologists and 4 midwives). The infertile couples were selected through purposive sampling and considering maximal variation from patients attending state-run and private infertility treatment centers as well as infertility specialists, offices in Isfahan and Rasht, Iran. Unstructured in-depth interviews and field notes were utilized for data gathering and replying to this research main question, "What are the counseling needs of infertile couples?" The data from medical personnel was collected through semi-structured interviews. Data analysis was carried out through conventional content analysis.
RESULTS: Data analysis revealed two main themes. The first theme was "a need for psychological counseling," which included four subthemes: Emotional distress management, sexual counseling, marital counseling, and family counseling. The second theme was "a need for guidance and information throughout treatment process," which included three subthemes: Treatment counseling, financial counseling, and legal counseling.
CONCLUSIONS: The counseling needs of infertile couples are varied, and they require various psychosocial support and counseling interventions. The participants of this study identified clearly the significance of psychological counseling and information throughout the long and onerous journey of infertility and its treatment.

INTRODUCTION

Infertility is defined as the inability to conceive at least 1 year after regular and unprotected sexual intercourse.[12] The prevalence of infertility differs from one country to another,[234] and is reported to range from 5 to 30% in various countries.[4] As estimated by the World Health Organization (WHO), 60–80 million couples are currently suffering from infertility.[5] As per the study results of 2003–2004, 24.9% of Iranian couples were estimated to have a history of Lifetime Primary Infertility. It was also estimated that about one-fourth of Iranian couples experience primary infertility in their married life.[6]

Infertility was identified, in Bangkok statement of 1988, as a health problem of significant physiological, psychological, and social aspects.[7] Infertility proves to be the most stressful experience with various psychological damages;[18] its treatment is coupled with several emotional, physical, and economic burdens for the couples.[1] Infertile couples regard the iterative and long treatment periods as a recurring crisis.[9] Despite the fact that technological and scientific progress and new infertility treatment methods have brought fresh hope to infertile couples, emotional and psychological impacts of infertility have unfortunately been overlooked, and only the biological and medical aspects have been considered.[10] But provision of psychosocial supports along with current medical treatments is important, and counseling is regarded and supported as one of the essential components of infertility treatment.[811121314151617]

As a result, identification of psychosocial and counseling needs of infertile patients may prove effective as a pre-requisite for designing and developing counseling and support interventions. However, only a few number of research works have dealt with infertile patients’ counseling support needs.[8] In a qualitative study on 32 Canadian heterosexual infertile couples, Read et al. showed that most of the participating couples needed psychosocial and counseling support during their treatment, but only half of them had made use of such programs. Participants of the mentioned study pointed out support programs such as peer mentoring, sharing experiences, couples counseling, and guidance during treatment procedure for satisfaction of their psychosocial needs.[8] In a survey over a greater population of 834 infertile couples and conducted from 1975 to 1985, Edelmann and Connolly utilized postal questionnaires for collecting information to identify infertile patients’ counseling needs. The results showed that one-third of the participating couples needed psychological and information support.[18]

Different aspects of infertility have been studied in various quantitative studies in Iran, but qualitative studies performed in this regard are few.[19] Although the conducted studies emphasize the significance of different types of support and counseling interventions along with medical and surgical treatments of infertility,[11121314151617] none of them have thus far tried to justify infertile patients’ counseling needs specifically, and therefore, the nature of these needs are not precisely specified. Identification of these needs offers an opportunity to health and treatment authorities for designing appropriate and required support solutions.

On the one hand, these needs are of complex nature which is in accordance with the cultural, social, and economic background of each society.[20] On the other hand, surveys and quantitative studies, despite their efficacy, cannot offer a full and detailed account of patients’ needs and experience.[8] Qualitative studies that are based on holistic philosophy and inductive reasoning prove appropriate for assessing patients’ experience and their views on their needs.[21] Considering the existing gap, researchers of the current qualitative study aimed to justify infertile couples’ counseling needs.

MATERIALS AND METHODS

This study is part of sequential exploratory mixed methods research which was implemented for justifying infertile couples’ needs and for the development and validation of a need assessment instrument for these couples. Only part of the data gained from qualitative interviews with infertile couples and key informants is presented in this paper. Part of the qualitative data obtained from interviews with 17 infertile couples was published in another paper.[22]

In this qualitative inductive content analysis study, 26 Iranian infertile couples were selected in a purposive sampling, and maximal variation was taken into consideration in this selection. Unstructured and in-depth interviews were conducted with couples in an infertility clinic of an educational hospital, private physician offices, and private infertility centers in Isfahan and Rasht. Also, field note taking was utilized for data gathering.

Since infertility affects both partners in a couple, a dyadic approach was used in interviews.[8] Thus, 26 couples were interviewed in joint sessions attended by both spouses. Also, to obtain more comprehensive information on the aspects of patients’ needs which may be overlooked by couples, seven medical personnel (three gynecologists and four midwives) as key informants, who were aware of the treatment experience and caring for infertile couples, were interviewed. The interviews were of semi-structured type conducted using the interview guide questions that were obtained from the feedback gained from interviews conducted with infertile couples. Some of the interview guide questions were: “Please speak about your experience of infertility as a healthcare provider.” “What are the general problems faced by infertile couples?” What are the challenges faced by the couples during assessment and treatment of infertility?” “What are their greatest needs?” “What solutions do you recommend for meeting their needs?”

The interviews were held in one or two sessions of 20–60 min. Data collection was continued up to data saturation. All interviews were recorded and were transcribed with non-verbal interactions, and they were then analyzed concurrently. Data collection and concurrent analysis of qualitative data were conducted from June 2012 to May 2013. Data were collected from the answers given to the main question of the study, “What are infertile couples’ counseling needs?”

Conventional content analysis method was used for data analysis. Qualitative data analysis stages were conducted as per the stages recommended by Graneheim and Lundman.[23] Therefore, the primary codes (smallest meaning units) were extracted after a review and re-reading of the transcribed text. Then the combined codes were obtained after removal of recurring codes. Then the modified codes were placed in subthemes or preliminary themes. The subthemes were then placed in themes, which were composed of more abstract concepts, as per their meaning similarities. Table 1 shows how themes and subthemes were extracted from the primary codes.

Table 1

An example of the extracted main codes, subthemes, and themes of the counseling needs of infertile couples

The rigor and trustworthiness of data was ensured through increasing the number of interviews, member checking, maximal variation, peer checking, peer debriefing, review of transcriptions by some of the participants, researchers’ interest in the subject of the study, and prolonged engagement with data.

All ethical considerations were taken into account in this study. The couples who referred to the centers were introduced to the researcher by the nursing or midwifery director, the midwifery personnel in infertility treatment centers, and by the secretaries or related professionals in private offices. The researcher first introduced herself, and then explained about the subject and objectives of the study and the eligibility criteria of participants. Having gained their trust, the researcher invited the couples to participate in the study voluntarily. The time and venue of interviews, which were mainly held in the centers or physicians’ private offices or even at participants’ home or work place, were selected as per participants’ preference. Participants’ informed consent for participation in the study and recording their interview by a digital sound recorder was obtained before the commencement of interviews. They were also informed that they could withdraw from the study at any stage they liked and their information would be kept confidential and used solely for the purposes of the study.

RESULTS

Data analysis revealed two main themes: 1. “a need for psychological counseling,” which comprised four subthemes including “emotional distress management,” “improving couples’ emotional relationship (marital counseling),” “improving sexual performance (sexual counseling),” and “improving family performance (family counseling),” and 2. “a need for guidance and information during treatment process,” which comprised three subthemes including “treatment counseling and familiarity with treatment procedures,” “financial counseling,” and “legal counseling.”

A need for Psychological counseling

Participants’ experience revealed the first theme, “a need for psychological counseling.” The stress caused by infertility and its treatment brings about a full-scale crisis for infertile couples and impacts their emotional and psychological condition as well as their marital, sexual, family, and social life stability. Many participants expressed their experiences indicating their need for receiving psychological counseling services.

Emotional distress management

One of the main problems stated explicitly or implicitly by most of the couples (especially women) was emotional distress caused by infertility and its treatment. One of the female participants said in this regard:

“I cannot live or work. I feel so sick that I cannot even manage myself. I only sit in a corner and cry. I want God to only give me some peace.”

Another participating couple mentioned this:

“After the diagnosis of infertility, we were so damaged mentally. We had lost all hope. We wonder how we could manage ourselves if our homeopath doctor hadn’t helped us.”

One pair of the couples who had previously used psychological counseling services and wished to continue using those services mentioned this:

“My spouse was so anxious. We referred some counselors, but they could not help us. If anyone knows a good counselor in Isfahan, I would really be grateful if he or she could introduce the counselor to us.”

One of the gynecologists mentioned in this regard this:

“All couples should have routine counseling sessions with a psychologist. Most of the couples tend to get depressed. They sometimes suffer personality disorders. They get recluse and avoid the society.”

One of the participating midwives said:

“Counseling is quite effective. If possible, the couples should be helped with their counseling costs as they are quite expensive in private centers. Many patients may avoid counseling sessions for their cost.”

Marital counseling

Some couples pointed out the negative effect of infertility and its treatment on couples’ emotional relations and solidarity of their marital life. Verbal arguments with, and blaming, the spouse, lack of joyous moments in marital life, and a sense of dissatisfaction with marital life were mentioned as instances of the effects. To get around their problem, most of these couples seek out physicians’ help, after relying on God, for the resolution of their problem as early as possible, so that they can have a kid. One of the couples who had previously made use of counseling services explained about their positive experience this:

“We even considered divorce once. We have no problems with each other and we were considering divorce only for the issue of infertility. Thanks to counselor's advice, we agreed not to go through divorce.”

One of the participating women mentioned this:

“I am annoyed by my husband's infertility. We have lots of fights over this issue. We have not had a good day in our life. It is always in my mind that we do not have any kids.”

Another participating couple mentioned with this regard this:

“This issue affects one's life definitely. When there is no kid, life seems cold and in a rut. Kids are necessary for life. Life is happier with kids.”

According to the first author's observation, one of the most common problems of infertile couples is that, upon the diagnosis of infertility, they start looking for someone to blame. In fact, they blame one another for the issue and try to excuse themselves. This is more common in men than in women.

However, it is also worth to note that some of the couples not only were satisfied with their life, but also felt that despite the issue of infertility, there was greater affection and intimacy between them than before.

Sexual counseling

Most of the participating couples were embarrassed to some extent by talking about sexual relations and respective problems. However, some of the couples believed that infertility and its treatment had no negative effect on their sexual relations, while some complained about decreased sexual desire and satisfaction due to inconclusive intercourses. In some of the couples, the bad feeling of getting engaged in treatment process and being forced to follow scheduled intercourses resulted in a decrease in sexual pleasure and other appeals of marital life, and replacement of love and affection by resentment and hatred. One of the participating women mentioned in this regard this:

“I have no proclivity for sleeping with my husband. I don’t mean that I don’t like him. But as I find it ineffective, I have no willingness.”

One of the participating couples mentioned this:

“When the doctor says that I should have sex with him every other night during the time I am on these pills, then my mind is occupied with this issue all the time. Then you have to look at it as a duty. This makes one nervous.”

Another couple said in this regard:

“One gets disappointed and does not feel the same appeal and willingness one used to feel before. It appears to one as if the sole purpose of sexual intercourse is child-bearing and pregnancy.”

One of the participating midwives mentioned, with regard to the significance and necessity of addressing infertile couples’ sexual problems and the necessity of sexual counseling, this:

“Some of the couples, and often one of the partners, feel a loss of sexual pleasure and satisfaction after ineffectual intercourses. They may also resent one another. I think it is important to have sexual and midwifery counseling units in infertility treatment centers for better handling of these issues.”

Family counseling

Family's approach, and that of people surrounding the couples, has a great effect on infertile couples’ life. Their uncalled-for interventions and unnecessary sympathy cause couples’ resentment, disturbing their peace and sometimes shaking their life foundations. Some couples tend to hide or tell white lies for escaping and evading their families’ interventions and uncalled-for curiosities. One of the couples mentioned in this regard this:

“We jointly agreed that we would not mention anything to our families and acquaintances. If they know about it, no problem will be resolved. As a matter of fact, they may disturb our peace.”

Another participating couple mentioned this:

“Acquaintances create more problems. They constantly ask who the source of the problem is, me or my husband. If I am the source of the problem, then my husband should marry another woman. And if my husband is the source of the problem, then we’d better get separated.”

One of the gynecologists mentioned in this regard this:

“Family support is very important. Both families should take no sides. Most of the times these families come to us looking for someone to blame.”

One of the midwives mentioned in this regard this:

“These couples’ families must also receive counseling and training. Most of the times, the families think they are sympathizing or helping, but they are actually ruining it with their lack of knowledge.”

In this regard, some of the couples emphasized the positive and supportive role of their families and deemed it as a significant emotional support.

A need for guidance and information during treatment process

In the conceptualization of infertile couples’ counseling needs, some of participants’ statements revealed the second theme, “a need for guidance and information during treatment process,” which comprised three subthemes of “treatment counseling,” “financial counseling,” and “legal counseling.”

Treatment counseling and familiarity with treatment procedure

Based on most of the participants’ experience, they have been unaware and unfamiliar with the treatment process, the medicine, and its side effects. This had led to their confusion, uncertainty, fear, hopelessness, distrust, and dissatisfaction. One of the participating couples mentioned in this regard this:

“They should clarify some certain issues from the very beginning so that we know what to do, how hopeful one can be, or whether one should make an attempt or not. One is currently uncertain what to do.”

Another couple mentioned this:

“Adequate information is not provided to us. For instance, no information is provided on the conditions in which the medicine must be kept. One does not know whether they must be kept in the fridge or not. They provide no guidance. Or whether an imported or Iranian medicine is better.”

Another participating midwife said this:

“Treatment counseling is necessary before the commencement of treatment. The whole process of treatment and success rate of each treatment method must be clarified to them so they start the treatment knowingly.”

A gynecologist said in this regard this:

“We need to explain about treatment protocols to patients in the beginning. They should know that we progress step by step and there is not much chance for pregnancy in each step. Patients should not lose hope and should not discontinue the treatment when they get no results.”

In addition to emphasizing the necessity for providing information and awareness to couples during treatment, some participants recommended other methods such as holding training courses in infertility centers, providing written information, providing information through websites, and presenting educational slides or movies.

Financial counseling

The costs of infertility diagnosis and treatment are among the essential challenges faced by couples. Some of the participants maintained that if they knew about the enormous costs of treatment from the very beginning, they may not have agreed to the treatment at all. One of the midwives mentioned with regard to the necessity of providing economic counseling and clarifying treatment expenses to infertile patients this:

“Sometimes the patients have to spend all their savings of several years. They not only get any results, but also lose all they had saved. If the patients are clarified properly from the very beginning, they may decide not to start the treatment at all.”

One of the gynecologists mentioned in this regard this:

“The medical team should explain about the problems, especially treatment expenses, to the couples in the beginning so they can take measures without any stress, hopelessness and false hope.”

Another participating midwife said in this regard this:

“I have seen some patients who said that they would have discontinued the treatment or at least avoided taking such large loans if they knew about the huge expenses and the low chance of success.”

Legal counseling

The couples who needed a third person's help with regard to using assisted reproductive methods such as oocyte or embryo donation or gestational surrogacy were the main patients who referred to legal counseling units in infertility centers. They emphasized the significance and necessity of legal counseling in patients’ deliberate decision making for selecting assisted reproductive treatments, familiarity with current rules and regulations, and gaining necessary information on donators’ genetic health and their appearance features. One of the couples mentioned in this regard this:

“When I came to know my husband is suffering from azoospermia, I decided to use embryo donation, but my husband was not agreeing to that at first. However, he finally agreed to that unwillingly. But when we referred to the legal counseling unit, they advised us and explained all legal aspects of the issue so properly that my husband has had no further doubts since then.”

One of the midwives said in this regard this:

“We are short of space and resources here. It might be necessary to have a legal unit outside this center so that they can follow-up patients’ legal issues. Or we can provide the information we deem as appropriate to the patients through websites and with codes and passwords so that they get clarified on the issue.”

DISCUSSION

A review of participants’ experience revealed that infertile couples’ greatest counseling needs were “psychological counseling” and “a need for guidance and information during treatment process.”

According to the findings of this study, psychological counseling proved to be one of the significant needs of infertile couples. The experience of infertility imposes immense emotional distress on the individual and the couple, which can result in great social and psychological stress.[24] The inflexible, exhausting, long, and expensive treatment programs are causes of stress, especially when they prove ineffectual.[25] Thus, psychological treatments are also recommended along with conventional medical treatments.[26] Psychological counseling can be beneficial for the patients who are going through stressful and uncontrollable conditions.[827] As per the results obtained by the current study, only one pair of the participating couples was intending to use psychological counseling despite its significant benefits. Most of the couples were deprived of these services due to their unfamiliarity with the support counseling services and the centers providing these services, having no access to experienced and trusted counselors, and the huge cost of counseling sessions. Most of the couples participating in Read et al.'s study also deemed professional psychological services as unnecessary. Some of the couples also avoided these services due the negative attitude they maintained and their fear of the label and stigma attached to using these services.[8]

Other subthemes of psychological counseling were “a need for marital counseling” and “sexual counseling.” Many studies have shown the effect of infertility on couples’ married life and their sexual relations. Sexual malfunctioning is the hidden companion of infertility treatment.[28] Infertility that affects both sexual partners brings about many challenges in an individual's emotional, sexual, and marital relationships. Many couples go through serious uncertainties in their relationship, while some of them may feel more satisfied and intimate than before.[29] The results of the present study, confirming Khodakarami et al.'s results, indicated that infertility may have both positive and negative effects on couples’ relationship.[16] The couples who are exposed to the risk of relation deterioration should be introduced for receiving support interventions.[29]

Sexual counseling also helps the couples to share their sexual problems through expressing their feelings and thoughts on their sexual issues. The counselor will then be able to identify their problems and assist them. Informing couples of common sexual problems that are faced by infertile couples will prepare them for an effective dealing with these challenges.[15] Although evidence suggests the effectiveness of most of marital therapies in the treatment of psychological and relational damages suffered by couples, most of the distressed couples do not take measures for treatment of their marital problems.[26] The great desire for pregnancy and having kids is a strong motivation that makes all physical, mental, social, interactional, financial, and family problems of infertility bearable. It is worth to note that most of the couples participating in the present study did not think that they should, besides usual medical treatments, take any other measures for resolving their relation, emotional or sexual problems, or seek any support and counseling services. They believed that their main need was having a kid and were trying ceaselessly to have a kid and, thus, overlooked their other needs by dedicating all their energy to the treatment of infertility (and not its outcomes).

Another subtheme that was revealed was “counseling with families.” Families and acquaintances’ support can be of great benefit to the infertile couples. If families and acquaintances know more about the emotional aspects and psychological challenges suffered by these couples, they can then respond to their needs more appropriately. Infertile people tend to rely on the husband and families when stressed out by infertility. Interaction with, and support from, relatives and friends can help in reducing their stress and offering them some peace of mind. As per the obtained evidence, women in comparison with men demand greater social support for dealing with infertility stress.[30] Family members and friends’ attitude and reaction affects infertile couples’ attitude, their interpretation of their problem, and their ability to adapt with their perceived condition immensely.[31] Thus, families need to receive adequate education.[16] Families’ performance and their negative attitude can be improved by some education and counseling sessions.

An emphasis on the subthemes such as “medical counseling,” “financial counseling,” and “legal counseling” was a finding of the second theme which highlighted the significance of “guidance and information during treatment process” for the couples. The findings obtained by the current study showed that infertile couples’ counseling needs are varied, and psychosocial support (psychological counseling) cannot fulfill infertile couples’ needs by themselves. Thus, participants’ experience indicated their need of varied information and counseling services. These findings confirm those obtained by Read et al. and Boivin.[827]

Infertile couples’ concern on treatment procedures can be alleviated by providing them with some comprehensive information; this will also have a positive effect on their health directly or indirectly. Patients with greater knowledge and less stress can contribute to therapeutic decision making and follow the recommended treatment advice more effectively.[32] The results obtained by Schmidt et al. confirmed the results of the present study suggesting that announcing the medical test results to patients and informing patients of various treatment options is deemed as the most basic healthcare standard.[33] The results obtained by Pedro and Andipatin also indicate that access to accurate, reliable, and urgent information which improves couples’ knowledge and awareness on the issue of infertility can be regarded as an effective solution for dealing with such stressful conditions.[34]

Although achieving global standards of patient-centered fertility care may take healthcare providers some great structural changes in the long term, provision of information through educational pamphlets, movies, and educational slides, educational courses in infertility centers, and the portals of these centers can be a practical and economic short-term solution.

CONCLUSION

The counseling needs of infertile couples are varied, and they require various psychosocial support and counseling interventions. The results of the present study reveal the necessity of addressing this issue and the effects of these needs on couples’ health. The participants of the study justified the role of counseling needs in the long and difficult journey of infertility and its treatment in the context of psychological counseling and information support programs.