Nordic couples’ decision-making processes during assisted reproduction treatments

Sexual & Reproductive Healthcare 4 (2013) 49–55

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Nordic couples’ decision-making processes during assisted reproduction treatments Helga Sol Olafsdottir a,d,⇑, Matts Wikland b, Anders Möller c a

Landspitali University Hospital, Dept. of Obstetrics and Gynaecology, Reykjavik, Iceland Fertility Center Scandinavia, Gothenburg, Sweden c Ersta Skondal University College, Stockholm and Gothenburg, Sweden d University of Iceland, Dept. of Social Work, Reykjavik, Iceland b

a r t i c l e

i n f o

Article history: Received 3 February 2012 Revised 4 April 2013 Accepted 7 April 2013

Keywords: Infertility ART treatment Decision-making Nordic countries

a b s t r a c t Objective: To study couples’ perceptions of their decision-making process during the first three years of infertility treatments. Study design: This study is a part of a larger project studying the decision-making processes of 22 infertile heterosexual couples, recruited from fertility clinics in all five Nordic countries, over a three year period. A descriptive qualitative method was used. Main outcome measures: Process of decision-making during assisted reproduction treatments. Results: Seventeen couples had succeeded in becoming parents after approximately three years. Our study suggests that the decision-making process during fertility treatments has three phases: (i) recognizing the decisions to be made, with subcategories; the driving force, mutual project, (ii) gathering knowledge and experience about the options, with subcategories; trust, patient competence, personalized support, and (iii) adapting decisions to possible options, with subcategories; strategic planning, adaption. The core category was ‘‘maintaining control in a situation of uncertainty.’’ Conclusions: Two parallel processes affect couples’ decision-making process, one within themselves and their relationship, and the other in their contact with the fertility clinic. Couples struggle to make decisions, trusting clinic personnel for guidance, knowledge, and understanding. Nevertheless, couples expressed disappointment with the clinics’ reactions to their requests for shared decision-making. Ó 2013 Elsevier B.V. All rights reserved.

Introduction The experience of infertile couples during assisted reproduction treatments can be likened to that of stepping onto a train and not being able to step off until the end of the line, regardless of whether the destination is the desired one. Numerous studies have examined the experience of infertility treatments from both medical and psychosocial perspectives [1,2]. In a recent literature review study, Greil and colleagues show that while medical and psychological factors have traditionally received the greatest attention as aspects that can affect the experience, other aspects such as social construction of infertility are attracting more attention today [3]. Recent studies of the timing of conception [4] and of the decision to attempt fertility treatments [5] are examples of this, with findings that show that the decisions are mainly made in a social context as couples base their choice on what is intuitively right for them, the involvement of others and the pressure of society’s social norms. Another review study by Dancet and colleagues analysed 51 studies and found that patients want care that ⇑ Corresponding author. Address: Dept. of Obstetrics and Gynaecology, Landspitali University Hospital, 101 Reykjavik, Iceland. Tel.: +354 8680087. E-mail address: [email protected] (H. Sol Olafsdottir). 1877-5756/$ - see front matter Ó 2013 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.srhc.2013.04.003

focuses on both ‘‘human needs’’ and medical needs [6]. Consequently, research has shifted towards patient-centred care, where autonomy and respect for the patient are among the strengths of good care practices [7]. Investigating people’s decision-making processes may assist our understanding of how patient-centered care is carried out. The decision-making process during ART1 treatments has received little attention. Two articles focus on gender differences in decision-making relating to infertility. In 1990, Frank found that gender differences influence decisions. Men focus more on potential side effects, whereas women focus more on the effectiveness of the treatment [8]. Zeiler discusses the problem of shared autonomous decision-making when couples have to reach an agreement. She argues that individual contributions to a shared final decision may be unequal [9]; this is particularly true regarding fertility treatments, where women often dominate the decision-making [5,9–11]. Studies of couples who discontinue treatment and couples who experience difficulty in deciding when to stop further treatments have increased awareness about the decision-making process during fertility treatments [10–12].

1

Assisted Reproductive Technology.

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Importantly, fertility clinic professionals must understand the process and the factors that influence decision-making to be able to help at critical moments when couples have to make a decision. This study aimed to explore couples’ perceptions of their own decision-making process during the first three years of infertility treatments. Methods Participants This study is a part of a larger project about Nordic couples undergoing ART treatment [4,5,13]. We recruited 22 heterosexual couples at fertility clinics in Denmark (n = 3), Finland (n = 6), Iceland (n = 3), Norway (n = 4), and Sweden (n = 6) after their first appointment with a specialist. Inclusion criteria were (i) having no experience of infertility treatments, (ii) having no mutual children, (iii) living together, and (iv) fluency in Danish, Icelandic, Norwegian, or Swedish language. Because Swedish is an official second language in Finland, we accepted Swedish-speaking Finnish couples. The study group included couples ranging in age from 23 to 41 years with unknown and known reasons for reproductive difficulties. Participants were recruited from both private and public fertility clinics located in small towns and larger cities. Procedure A Research Ethics Committee in each country approved this qualitative study before recruitment began. During the first study [4], 22 couples agreed to participate in a follow-up study after approximately three years. The first author (Sol Olafsdottir) contacted the couples at that time and asked whether they were still prepared to participate and all couples agreed. This report is based on these 22 interviews. Sixteen of the interviews were transcribed verbatim by experienced transcriptionists in each country in the respective language, and the remaining ones were analysed by listening and taking notes. Since there is a difference between the written and the spoken word, this method has the advantage of giving a new dimension of analysis, in line with Kvale’s discussion about the importance of giving sociolinguistics more room in qualitative research [14]. This is especially important in multilingual studies and where languages share the same origin but similar words have different meanings, which is often the case with the Nordic languages. The researcher listened to all the interviews several times and made notes to gather both additional information and nuances. Although the researchers have a good knowledge of the Nordic languages, it became clear that it was important to have native knowledge of each language to get the right words and meaning when transcribing. Since external transcriptionists were used, with the exception of the Icelandic interviews, the researcher verified the transcripts by simultaneously reading and listening for anomalies, e.g., specialist words like IVF, ICSI, which were sometimes problematic for the transcriptionist. Data collection The interviews were conducted in 2009. Couples were asked to tell the stories of their infertility journeys without much interference from the interviewer. A list of topics and probing questions (Fig. 1) was available if needed. Interviews were recorded and lasted 1–2 h. Participants selected the interview location; 12 couples were interviewed at home, 9 couples came to the fertility clinic, and one couple was interviewed at another location. Except for one couple, in which the man did not participate, both partners were interviewed at the same time. All interviews were conducted

An example of interview themes and questions. Demographical information The decision-making process • Where did you start? • Why there? • How long did it take to reach a decision? • Who pushed? • Did you get information about other options at that time? • If yes, from whom and what other options? • What do you think today about that information? • How did that affect your decisions? The next decision (repeat as necessary) • What did you do next? • How was it to make the decision as compared to the first decision? • How long did that decision take? • Why that decision? • Were there other options? • Did you get information about other options? • If yes, from whom and what other options? • What do you think today about that information? • How did it affect your decisions? • What do you think has helped you in making decisions? Today (the interview) • What do you think about your life today? • Where are you today regarding infertility treatments? • How involved have you felt throughout the whole process? Fig. 1. Topic list.

by the same author (Sol Olafsdottir), who has extensive experience of research interviewing. Participants were encouraged to elaborate and reflect on their experience and feelings about their situation. The interviewer potentially could gather extensive information from couples about specific aspects that arose during the interview. Interviewing the man and woman together had both drawbacks and benefits. Although it made it more likely that they could help each other remember and elaborate, one partner might have withheld opinions or information to protect the feelings of the other. Both partners were interviewed together because this study focused on mutual, not individual, decision-making. Data analysis Following Strauss and Corbin, we analysed our interviews using methods of Grounded theory [15]. Our analysis began by reading and listening to the interviews and performing open coding on them. This is done by labelling the phenomena or the concepts found in the data, giving a name to a relationship or condition relating to the concept. The use of open coding helps the researcher to question or explore common assumptions about the phenomena and to make new discoveries [15]. It is not sufficient to name or label a phenomenon, the idea is to first make subcategories that are later gathered into categories, and then develop a core category for the basis of the theory. The key to open coding is asking questions in terms of properties, in order to determining the characteristics or attributes of a category and to discover dimensions of the properties of the concept [15]. In this study open coding was used from the outset, since the researcher reviewed the interviews and labelled what was considered the meaning of the participants’ thoughts. The goal was to be open to all phenomena that were relevant to the decision-making process. Sometimes the concept or thought was clear, and sometimes it was hidden in a paragraph and surfaced later. The next step of the analysis was process coding, through which related concepts were gathered to identify the pattern with respect to

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properties and dimensions that then became the basis for the subcategories. Axial coding [15] was then used, in which the researcher linked the subcategories to categories in a set of relationships, conditions, contexts, action strategies and consequences. The last step was selective coding, which according to Strauss and Corbin, is used to discover the core categories that can become the basis for a theory [15]. One way of working towards this is to make a story line, a process line or a model that shows the relationship between the core categories and the subcategories. In this study a process line was found to be appropriate. One author (Sol Olafsdottir) did the analysis while the other authors, validated the analysis throughout the process. See the analysis process in Fig. 2. Results Background Among the 22 couples, 17 succeeded in having a child or children by some means (e.g., natural conception, ART treatments, third-party donation, or adoption). Three couples were still trying to have a child, either though oocyte donation or adoption. Two couples had not decided how to continue. No couple had decided to stop all attempts to become parents. Table 1 gives a more detailed picture of the results three years after contacting a fertility clinic. During the three years of ART treatments the couples went through three phases of decision-making.

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regarding treatments. The majority of the couples said it was the woman who pushed the decision forward or had the final say. The men felt it would not be ‘‘right’’ to pressure the woman into treatment because she is the one who had to endure the procedures. The men said they supported the woman, both verbally and silently, while she reached her decision. ‘‘He [the man] kept a low profile. He was supportive when I had the energy to go on, but did not oppose me when I wanted to stop.’’ (woman) Furthermore, the men expressed their worries about the women’s well-being. After experiencing the women’s distress about negative results, some of the men questioned the purpose of continuing the treatments. Nevertheless, it was often the woman who mentioned other alternatives The couples described their struggle to prepare simultaneously for negative results and the possible life changes resulting from positive results. Men and women prepared equally for a negative result, with exception of the first treatment where the majority of men said that they had expected it to work. Balancing hope and preparing for a negative result became more difficult with each treatment. Hoping for a positive result, some couples had prepared their homes, including a room for the child. Couples also mentioned making holiday plans depending on whether they would be in treatment or possibly pregnant. Mutual project The couples said that their quest for a child was rooted in a mutual longing; therefore, their decisions were also mutual.

Phase 1: recognizing the decisions to be made One of the fundamental parts of being able to make a decision is to recognize the need and have a force that drives the decisionmaking process. This force can span the spectrum from a longing to an active action involved in decision-making. Even when one partner was more actively involved in the decision-making process, the final decision was a mutual project for both partners. The driving force Although both men and women expressed their longing for a child, one was always more active in relation to the decisions

‘‘This was something we both wished for and you [the woman] did what you could to make it possible. And that made it positive for me.’’ (man) All the couples were still together after more than three years. Although some had experienced difficult periods, none had discussed breaking up. Many said it was a ‘‘mutual project’’, and all couples said their relationship grew stronger despite individual difficulties.

Full interview

Part for analysis Decision-making process

Open coding Labelling concepts, e.g. trust, to be prepared, support, information, experience

Process coding Subcategories: Related concepts are gathered to identify the pattern with respect to properties and dimensions E.g. mutual project, patient competence, strategic planning Axial coding Process flow: i) recognizing the decisions to be made, ii) gathering knowledge and experience about the options and iii) adapting the decisions to the possible options. Selective coding Core category is Maintaining control in an uncertain situation

Fig. 2. Analysis process.

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Table 1 Information about the participants. At the time of the first interview Age

Denmark Public clinic Finland Public clinic Private clinic

Iceland Private clinic Norway Public clinic Private clinic Sweden Public clinic Private clinic

a b

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22

Follow-up interview

Relationship

Period of trying

Children from prev.

F

M

years

years

His/Hers

29 26 26 27 23 26 29 27 33 30 39 38 28 25 33 31 32 31 38 33 40 30

40 28 25 41 28 41 29 30 28 30 32 35 30 25 37 35 32 37 32 35 40 35

3 5 8 8 2 2,5 11 5 9 11 2,5 2 5,5 4,5 4 8 5 4 9 7 2 10

0,4 0,7 2 2 0,9 2 1 1 2 2 1 1,5 3 3 3 2 3,5 3 2,5 5 1 5

1/0 0/0 0/0 1/0 0/0 0/0 0/0 0/0 0/0 0/0 0/1 2/0 0/0 0/0 2/1 0/0 0/0 0/0 0/1 0/0 0/2 0/0

Infertility reasons

Treatmentsa

Children

Female factor Female factor Male factor Combined Female factor Female factor Combined Unexplained Female factor Female factor Combined Female factor Female factor Female factor Female factor Male factor Male factor Male factor Female factor Male factor Unexplained Combined

3 IUI + 1 IUI + 2 IUI 7 IVF 4 IVF + 2 IVM 5 IVF 2 IUI 1 IVF No treatment 4 ICSI No treatment 1 IVF 1 IVF 1 ICSI + 1 FET 1 IVF 1 ICSI 6 IVF 1 IVF/ICSI + 1 FET 2 IVF + spontaneous 2 IVF 1 ICSI 1 ICSI + 2 ICSI + spontaneous 1 ICSI + spontaneous 1 IVF + spontaneous 1 IVF 2 ICSI + adoption 4 ICSI + OD

3 (1 + 0 + 2)b In adoption process 2 (2)b Waiting for OD 1 1 0 2 1 2 0 Waiting for OD 2 2 1 1 1 and pregnant 2 1 1 1 1 21 Children

Only treatments are counted, as well as FET if it results in pregnancy. Twins.

‘‘When we started the process we were both ready and I believe it [the experience] has made our relationship stronger.’’ (man)

questions. Some couples said that the clinic personnel did not trust their judgement (e.g., regarding pain reduction during oocyte pickup).

Phase 2: gathering knowledge and experience about the options

‘‘I felt, just when it came to pain reduction medicine, you needed to demand it, you were never offered, you needed to demand it the whole time.’’ (woman)

Reproductive technology treatments are a new experience for most people in this situation. In the beginning couples are required to make decisions with little to no knowledge of the field, so they have to trust the clinic. As time goes by, the decision-making process is affected by experience and familiarity as the couples gain specialist knowledge about their condition and need more personalized care and support. Trust Couples said that they were initially relieved to be in ‘‘professional hands’’. They had full confidence in clinic personnel because the doctors were specialists and knew what was best for them. As time passed, the couples reported their frequent requests for more information about their specific condition. Some couples were disappointed with the responses, saying that they felt that clinic personnel did not take their requests seriously.

Patient competence As they underwent more treatments, couples said they gained a better understanding of the process and procedures. This experience and familiarity with procedures made the couples better informed to ask appropriate questions. They described their responsibility as understanding the doctor’s indirect information and unspoken messages. ‘‘He [the doctor] may not have used those words, but we were absolutely sure about what he thought we should do.’’ (woman)

‘‘I feel it is extremely frustrating to hear about new methods from ´t other sources than you should hear about them from. If you don get this information from your doctor, but from the support groups, then you lose your hope and trust, why is nobody telling us this?’’ (woman)

On several occasions, the couples said that they knew what the doctor felt, and then they interpreted the meaning of what the doctor was saying. Couples often based their decisions on this assumption. A common remark was: ‘‘He/she said it was our decision, but I knew what was his/her opinion.’’ They also said they knew when clinic personnel were giving them a pep talk, but they still appreciated it. Another aspect of patient competence mentioned by some couples was that they were quick to sense when someone was unprofessional or did not have enough knowledge.

Meeting with different doctors and having no single doctor ‘‘responsible’’ for them made couples distrust the clinic.

‘‘If she (the nurse) feels like she is not able to have the talk, she ´ t say anything but leave it to the doctor to talk to us.’’ shouldn

‘‘How can we be sure that they [doctors] have read our records and know what we need, when the first time they saw us was at the oocyte pick-up?’’ (woman) Compared with those who became pregnant after one treatment, couples who had been through several treatments without success expressed a greater need for information and had more

Personalized support The couples expressed mixed feelings about the support they received from the clinics. Two couples, both of whom conceived a child after one treatment, described the same clinic differently: ‘‘welcoming them with open arms’’ and ‘‘like being a product on an assembly line’’. Some couples who had changed from a public clinic

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to a private one, or vice versa, said that the private clinic was less stressful and the personnel had more time. ‘‘When we were at the public clinic we were satisfied with it, but looking back we are not happy. At the private clinic we felt for the first time that somebody really took the time to analyse our results.’’ (woman) Nevertheless, couples from both private and public clinics commonly remarked that they would have liked to be seen and noticed more ‘‘Only one question would have been enough. How are you feeling? or How are you both coping?’’ (woman) They mentioned that the clinic personnel seemed pressured for time so the couples were reluctant to ask questions and seek support. ´ t want to ask because they know it then ‘‘They [the personnel] didn would take half an hour’’ (man) Only one couple had taken advantage of the specialized psychosocial support offered by the clinic they used that offered it. Many were unaware of the service and others thought it was only for emergency cases or for couples with severe psychological problems. Another aspect of support involved being a part of category of people with reproductive difficulties. Here, feelings were mixed. Some couples expressed relief about seeing other couples in the clinic waiting room or at the information meeting. They were glad to see that they were not alone and that couples ‘‘just like them’’ were in the same situation. Other couples described the same situation as difficult, and they were not happy about participating in a ‘‘kind of group therapy’’, viewing it as an invasion of their privacy. Phase 3: adapting the decisions to the possible options The final goal for these couples was to become parents. At first they planned strategically how to optimise their possibilities to conceive with their own gametes. After a while they had to adapt to a new reality as third party donation or adoption became their remaining options. Strategic planning Strategic planning was the couples’ way of optimising their possibilities. Buying a package of three treatments, rather than three single treatments, at the private clinic was less expensive and was less stressful. Another strategy involved optimising treatments by using their frozen embryos prior to a new treatment. This was less physically demanding for the woman and cheaper at the private clinics. Starting an adoption process was yet another example of strategic planning for some couples. After a few fertility treatments, they had begun to suspect that they would eventually need to make such a decision. They based their argument on their awareness of the lengthy adoption process, and they wanted to be sure that they would not miss that opportunity. ‘‘Why not have the rest of the treatments and simultaneously an adoption process?’’ (woman)

Adaption All couples focused on having a child, and this was the endpoint of all decisions. Initially, the decision-making process consisted of the couple’s primary wish to conceive unassisted with their own gametes. As time passed and as they received more information during the treatment process, they adapted to the new situation

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and modified their longing to concur with their options. The process from abandoning the desire to conceive a child on their own to choosing help from a third party donation or adoption took time and effort. The main goal was to become parents and they followed the paths that were laid before them, trying to maintain control of the decision and avoid becoming victims of the circumstances. ´ t have a ‘‘It is difficult to make decisions about things that you don clue about. You just want a child and they say they can help you.’’ (man) For couples that had decided on oocyte donation or adoption, each individual went through a process of abandoning the desire for a mutual biological child to reach a joint decision. In most cases, their decision was based on information from the clinics regarding their minimal possibility of achieving parenthood with their own gametes. After reaching a mutual decision, all couples in this situation expressed relief and excitement about the new possibility. ‘‘When we discussed adoption, I thought that it was plan B, that we would never be in that situation.’’(father of adopted child)

Decision-making process: maintaining control in an uncertain situation Over the course of more than three years, study participants had made many decisions regarding their infertility: new treatments, taking breaks and new options. The core category was ‘‘maintaining control in an uncertain situation’’. The main goal was to become parents and they followed the paths that were put before them, trying to maintain control of the decision and avoid becoming victims of the circumstances. As mentioned above, the couples had various methods for trying to achieve a level of control. Nevertheless, they acknowledged that it was difficult because they had to adapt to each situation and had no control over the outcome. Fig. 3 illustrates the relationship between the three phases of the decision-making process and their subcategories. Discussion The decision-making process requires people to recognize the decisions to be made, understand all the options and their features, understand the values that affect decision-making and adapt to new information. Early in the process, the couples in this study decided to try ART treatments. Because knowledge of the options accumulates with experience, couples trusted their medical specialist until they gained that experience themselves. Their understanding during the process was complicated by the need to adapt to new information during the treatment period, and to change their values and priorities accordingly. In the first phase couples recognized that there were many decisions to be made as they began to pursue treatment, and they quickly found that infertility treatments are difficult both for the individuals [3,16–18] and for the couple [19,20]. While navigating these difficulties, the couple needs one of the parties to be a driving force; in this study, the woman played that role regarding treatments and other options. This finding concurs with other studies reporting that women are more likely than men to take the initiative about treatment [5,21] and the women are more treatmentoriented [22]. In our study, men were reluctant to take control of the decision, arguing that it was not their decision to make because the woman’s body was physically affected by the treatment. This is known from other studies in the reproductive field; women usually take the initiative to contact fertility clinics while men say that the decision is not theirs to make [5]. Peddie and colleagues determined that 2% of the women in their study said that the decision

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Recognizing the decisions to be made

The driving force • Mutual project

Gathering knowledge and experience about the options Trust • Patient competence • Personalized support

Adapting the decisions to the possible options

Strategic planning • Adaption •

Maintaining control in an uncertain situation Fig. 3. Three phase model of the decision-making process and categories.

to end IVF treatment was made by the couple [11]. Nevertheless, the men reported that they had expressed their worries about the woman’s well-being and questioned the point of continuing. That stance has been referred to as a ‘‘rational veto’’ [21] making the point but not making the decision [5,23]. The couples felt was it important for both partners to ‘‘own’’ the decision to continue treatments, it was a mutual project. As the couple moved forward with treatments, preparing for positive or negative results became more difficult so it was important that they were both invested in the decisions. Another study [24] showed that women’s level of distress increased in direct relationship to the number of treatments, and it is possible to speculate that couples’ hopes decrease as time goes by. Zeiler writes that if both partners accept the decision-making process, both are also engaged in shared decision-making [9]. Although decision-making may not be equally shared, the couples studied here had the same goal: becoming parents. In the second phase couples learned more about their situation and interacted more and more with the clinic, they gathered knowledge and experience about their options. The relationship between the couple and the clinic is a complex balance between the couple’s needs and wishes versus the reality of what the clinic can offer. Initially, couples in our study were relieved to be in the hands of specialists and had confidence in the clinic and trusted the providers. Nevertheless, as they gained experience and became more competent in their knowledge they felt they needed more information and began to question the doctors’ advice. This and other studies found that couples wanted more information concerning their specific condition after a few treatments, at the same time as they required less general information about treatment or other alternatives [10,25,26]. Other studies examining the need for patient-centred fertility care [6,7,26–28], supportive attitudes [29], and shared decision-making [26,30] have reported similar findings. In our study, many couples were disappointed with the support they received from clinic staff. When they felt that the clinic personnel were pressed for time they felt uncomfortable about asking questions, which contributed to their feeling of receiving too little support. This is known from other studies [23,31]. Aarts and colleagues reported recently that physicians underestimate and nurses overestimate their patients’ experience of attention and support given at the fertility clinic [32]. Meeting other patients can give additional support. The feeling of affiliation with a group

is a human need. For example, one reason for having children is to share a mutual experience with friends [4,33]. Similar to an earlier study by Imeson [34], our couples expressed relief at seeing others in the same situation, even if some would have preferred to keep their situation private [10]. The couples in our study expressed a tendency to interpret information from doctors according to what they thought the doctors had in mind rather than what they actually said. Aarts and colleagues found that professionals tend to underestimate how important accessibility, communication, patient involvement, and competence are to patients in relation to fertility care [32]. Our findings show that couples in this vulnerable situation felt that they needed to rely on their doctor’s judgment in the beginning, and that they then required more dialogue and attention to their values and preferences as they gained more experience with the treatments. In the third and final phase the couples in our study had over time adapted their decisions to new information and options. In an effort to become parents, they had to think strategically about the best way to make this happen. Strategic planning and adapting their wishes often led them to consider new possibilities, such as third-party donation or adoption. The need to adjust their lives to treatments or possible pregnancy is well known from the 1996 study of Imeson and colleagues, who noted that their study population changed lifestyles and careers and put holidays on hold [34]. Moreover, the possibility always exists that the treatments will not work and the couples will not become parents. None of the couples in our study had yet decided to forego trying. Making a decision to stop treatment is difficult [10,12,35], but people adapt to the new reality with time [20,36]. In our study, couples planned their decisions strategically when dealing with the structure of the service, both at the clinics and regarding adoption. Theories of decision-making mention two kinds of cognitive processes, intuitive and analytical [37]. People use intuitive processes when confronted with totally new situations (e.g., deciding to start ART treatments) [5]. Analytical processes adapt decisions to prior knowledge to increase the odds of achieving the goal. The goal for these couples was to become parents, but it was a journey of uncertainty. They based their decisions on experience and knowledge and used their intuition to judge what the right things to do were as their options changed, while trying to maintain some control over the uncertainty.

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Our findings show that a couple’s decision-making process is affected by two parallel processes, one within themselves and their relationship, and the other in their contact with the fertility clinic. In the beginning couples struggle to make decisions and trust the personnel for guidance, knowledge and understanding. As they gain more experience and knowledge they feel more capable to make their own decisions. They re-evaluate previous experiences to adapt their decisions to the new situation and to what is manageable for them or which treatment is available. After examining their options they also adapt their desire to what is possible to get, e.g., a child from their own gametes, oocyte donation or adoption. The present study had some limitations, the first being the initial selection process which yielded a homogenous group. A study including immigrants, same-sex couples and single parents might give additional information. Another limitation was that the study lacked a few alternatives in dealing with infertility, e.g., sperm donation, embryo donation, foster parenting, and deciding not to have a child, which could have added dimensions to the decision process. Implications for practice and research Our results show that to be able to make decisions, couples would like personalized information regarding their situation from the clinics’ personnel, throughout the treatment process and in the event of terminating further ART treatments. Nonetheless, more research is needed to study how couples understand and process information given at the clinic and to better adjust it to individual situations. In conclusion, the decision-making process that surrounds infertility is complex one and it affects the couple’s relationship both with each other and with the clinic. Professionals working at fertility clinics must be aware of their influence on couples’ decision-making process and strive to adjust the care to the need of the couples. Acknowledgements We are grateful to all the couples who participated and the clinics that helped recruit them. We are also grateful to the Nordic School of Public Health for funding and to Letterstedtska föreningen for a travel grant. References [1] Matthiesen S, Klonoff-Cohen H, Zachariae R, Jensen-Johansen MB, Nielsen BK, Frederiksen Y, et al. The effect of an expressive writing intervention (EWI) on stress in infertile couples undergoing assisted reproductive technology (ART) treatment: a randomised controlled pilot study. Br J Health Psych 2012;17(2): 362–78. [2] Schmidt L. Infertility and assisted reproduction in Denmark. Epidemiology and psychosocial consequences. Copenhagen: University of Copenhagen. Institute of Public Health; 2006. [3] Greil AL, Slauson-Blevins K, McQuillan J. The experience of infertility: a review of recent literature. Social Health Illn 2010;32(1):140–62. [4] Sol Olafsdottir H, Wikland M, Möller A. Reasoning about timing of wanting a child: a qualitative study of Nordic couples from fertility clinics. J Reprod Infant Psychol 2011;29(5):493–505. [5] Sol Olafsdottir H, Wikland M, Möller A. Nordic couples’ decision-making processes in anticipation of contacting a fertility clinic. J Reprod Infant Psychol 2012:30(No. 2):180–92. [6] Dancet EAF, Nelen WLDM, Sermeus W, Leeuw LD, Kremer JAM, D´Hooghe TM. The patients’ perspective on fertility care: a systematic review. Hum Reprod Update 2010;16(5):467–87. [7] van Empel IWH, Nelen WLDM, Tepe ET, van Laarhoven EAP, Verhaak CM, Kremer JAM. Weaknesses, strengths and needs in fertility care according to patients. Hum Reprod 2010;25(1):142–9.

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[8] Frank DI. Gender differences in decision making about infertility treatment. Appl Nurs Res 1990;3(2):56–62. [9] Zeiler K. Shared decision-making, gender and new technologies. Med Health Care Philos 2007 Sep;10(3):279–87. [10] Peddie VL, VanTeijlingen E, Bhattacharya S. A qualitative study of women’s decision-making at the end of IVF treatment. Hum Reprod 2005;20(7): 1944–51. [11] Peddie VL, VanTeijlingen E, Bhattacharya S. Ending in-vitro fertilization: women’s perception’s of decision making. Hum Fertil 2004;7(1):31–7. [12] Sol Olafsdottir H. Why stop? The decision making process in couples undergoing in-vitro fertilization. Göteborg: Göteborg Universitet Editor; 2002. [13] Sol Olafsdottir H, Wikland M, Möller A. Access to artificial reproduction technology in the Nordic countries in 2004. Acta Obstet Gynecol Scand 2009;88(3):301–7. [14] Kvale S. An introduction to qualitative research interviewing. Thousand Oaks, California: SAGE Publications Inc.; 1996. [15] Strauss A, Corbin J. Basics of qualitative research. Techniques and procedures for developing grounded theory, 2nd ed. London: Sage Publications, Inc.; 1998. [16] Hammarberg K, Astbury J, Baker HWG. Women’s experience of IVF: a followup study. Hum Reprod 2001;16(2):374–83. [17] Domar AD, Zuttermeister PC, Friedman R. The psychological impact of infertility: a comparison with patients with other medical conditions. J Psychosom Obstet Gynecol 1993;14:45–52. [18] Volgsten H, Skoog Svanberg A, Ekselius L, Lundkvist Ö, Sundström Poromaa I . Prevalence of psychiatric disorders in infertile women and men undergoing in vitro fertilization treatment. Hum Reprod 2008;23(9):2056–63. [19] Peterson BD, Pirritano M, Block JM, Schmidt L. Marital benefit and coping strategies in men and women undergoing unsuccessful fertility treatments over a 5-year period. Fertil Steril 2011;95(5):1759–1763.el. [20] Wirtberg I, Möller A, Hogström L, Tronstad S, Lalos A. Life 20 years after unsuccessful infertility treatment. Hum Reprod 2007;22(2):598–604. [21] Throsby K, Gill R. It’s different for men. Men Mascul 2004;6(4):330–48. [22] Pasch LA, Dunkel-Schetter C, Christensen A. Differences between husbands’ and wives’ approach to infertility affect marital communication and adjustment. Fertil Steril 2002;77(6):1241–7. [23] Daniluk JC. If we had it to do over again. Couples’ reflections on their experiences of infertility treatments. Couns Ther Couples Fam 2001;9(2): 122–33. [24] McMahon CA, Ungrer JA, Beaurepaire J, Tennant C, Saunders D. Anxiety during pregnancy and fetal attachment after in-vitro fertilization conception. Hum Reprod 1997;12(1):176–82. [25] Porter M, Bhattacharya S. Helping themselves to get pregnant: a qualitative longitudinal study on the information-seeking behaviour of infertile couples. Hum Reprod 2008;23(3):567–72. [26] Dancet EAF, van Empel IWH, Rober P, Nelen WLDM, Kremer JAM, D´Hooghe TM. Patient-centred infertility care: a qualitative study to listen to the patient’s voice. Hum Reprod 2011;26(4):827–33. [27] van Empel IWH, Aarts JWM, Cohlen BJ, Huppelschoten DA, Laven JSE, Nelen WLDM, et al. Measuring patients-centredness, the neglected outcome in fertility care: a random multicentre validation study. Hum Reprod 2010; 25(10):2516–26. [28] Dancet EAF, D’Hooghe TM, Sermeus W, VanEmpel I, Strohmer H, Wyns C, et al. Patients from across Europe have similar views on patient-cenred care: an international multilingual qualitative study in infertility care. Hum Reprod 2012;27(6):1702–11. [29] Schmidt L, Holstein BE, Boivin J, Sångren H, Tjørnhøj-Thomsen T, Blaabjerg J, et al. Patients’ attitudes to medical and psychosocial aspects of care in fertility clinics: findings from the Copenhagen Multi-centre Psychosocial Infertility (COMPI) Research Programme. Hum Reprod 2003;18(3):628–37. [30] Frosch DL, Kaplan RM. Shared decision making in clinical medicine: past research and future directions. Am J Prev Med 1999;17(4):285–94. [31] Boivin J, Domar AD, Shapiro DB, Wischmann TH, Fauser BCJM, Verhaak CM. Tackling burden in ART: an integrated approach for medical staff. Hum Reprod 2012;27(4):941–50. [32] Aarts JWM, Faber MJ, van Empel IWH, Scheenjes E, Nelen WLDM, Kremer JAM. Professionals’ perceptions of their patients’ experiences with fertility care. Hum Reprod 2011;26(5):1119–27. [33] Langdridge D, Connolly K, Sheeran P. Reasons for wanting a child: a network analytic study. J Reprod Infant Psychol 2000;18(4):321–38. [34] Imeson M, McMurray A. Couples’ experiences of infertility: a phenomenological study. J Adv Nurs 1996;24:1014–22. [35] Rauprich O, Berns E, Vollmann J. Information provision and decision-making in assisted reproduction treatment: results from a survey in Germany. Hum Reprod 2011;26(9):2382–91. [36] Verhaak CM, Smeenk JMJ, Evers AWM, Kremer JAM, Kraaimaat FW, Braat DDM. Women’s emotional adjustment to IVF: a systematic review of 25 years of research. Hum Reprod Update 2007;13(1):27–36. [37] Downing C, College P. Reproductive decision making in families at risk for Huntington’s disease: perception of responsibility; 2001.