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Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care
Midwifery ∎ (∎∎∎∎) ∎∎∎–∎∎∎
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Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care Nina Asplin, RNM, PhD (Midwife)a,b,c,n, Hans Wessel, MD, PhD (Medical Doctor)a,d, Lena Marions, MD, PhD (Associate Professor)a,b, Susanne Georgsson Öhman, RNM, PhD (Associate Professor)a,c a
Department of Women's and Children's Health, Karolinska Institute, SE-17176 Solna, Stockholm, Sweden Karolinska University Hospital, SE-17176 Solna, Stockholm, Sweden c Sophiahemmet University, P.O. Box 5606 SE, 114 86 Stockholm, Sweden d Ultragyn i Sverige AB, Odengatan 69, 113 22 Stockholm, Sweden b
art ic l e i nf o
a b s t r a c t
Article history: Received 15 April 2013 Received in revised form 3 October 2013 Accepted 13 October 2013
Objective: to explore what women who have had a pregnancy terminated due to a detected fetal malformation perceived as having been important in their encounters with caregivers for promoting their healthy adjustment and well-being. Method: an exploratory descriptive design was used. Semi-structured interviews were audiotaped, and the information pathway described. The text was processed through qualitative content analysis in six steps. Setting: four fetal care referral centres in Stockholm, Sweden. Participants: 11 women opting for pregnancy termination due to fetal malformation. Findings: in-depth understanding and compassion are important factors in providing the feeling of support people need so they are able to adapt to crisis. The women emphasised that the caregivers have to communicate a sense of responsibility, hope and respect and provide on-going care for them to feel assured of receiving good medical care and treatment. Aside from existing psychological conditions, the women identified as having emotional distress directly after termination and for at least the following three months. Most women experienced a range of negative emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration. Still some of this group had positive reactions because they experienced empathy and well-organised care. Conclusion and implications for practice: The most important factors associated with satisfaction regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion. The changes in care most often asked for were improvements in the level of standards and provision of adequate support through state-dependent communication, in-depth understanding and compassion, and complete follow-up routines and increased resources. Targeted education for the caregivers may be suited to ensuring that they properly meet needs of their patients. & 2013 Elsevier Ltd. All rights reserved.
Keywords: Fetal abnormality Obstetrical ultrasound Psychological outcome Care
Introduction As improvements in ultrasound technology increase the detection rate of severe structural fetal abnormalities, more women are requesting a pregnancy termination (Levi, 1998; Deborah et al., 2009). Additionally, it has been shown in Sweden that a nuchal translucency ultrasound combined with biochemical analysis in early pregnancy has contributed to 16% increase in terminations of pregnancies because of chromosomal defects, in the last 10 years.
n Corresponding author at: Sophiahemmet University College, P.O. Box 5606 SE, 114 86 Stockholm, Sweden. E-mail address: [email protected] (N. Asplin).
However, the number of newborn children with Down syndrome remains constant (1 per 700–800 births) (National Board of Health and Welfare, 2012). Deciding to terminate a pregnancy can be difficult, and people go through a process to justify the decision (Asplin et al., 2013a). Normative moral principles, (i.e., moral rules and/or moral judgments) are introduced once the choice is made (Garcia et al., 2008). Distress is always a component when dealing with the knowledge of an antenatal malformation detected during an obstetric ultrasound examination. When a pregnancy termination is chosen because of the diagnosed fetal malformation, the pregnancy loss may involve a grieving process with high levels of grief and anxiety (Mashiach et al., 2013). One study reported that grief and post-traumatic symptoms remained between two and seven years after the event (Korenromp et al., 2005) whereas in another
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Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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study, contrary to what was expected, traumatic stress at four years was not significantly different to that experienced at 14 days (Kersting et al., 2005). Kersting et al. (2009) showed that the neural activation underlying acute grief in women after pregnancy termination due to fetal abnormality is the same as those involved in physical pain. The process is often complicated by feelings about decision-making and the procedure (i.e., late termination and/or induction of labour) that follows (Neidhardt, 1986; Geerinck-Vercammen and Kanhai, 2003; Sandelowski and Barroso, 2005; Ekelin et al., 2008). The therapeutic options are limited. A detected fetal malformation is traumatic both for the parents-to-be and for the caregivers (Demyttenaere et al., 1995; Salvesen et al., 1997). Antenatal health care is the site of some of the most intimate relationships women may have with health care providers (McCoyd, 2009). If the caregivers fail to inform, advise and support the women, it may lead to negative consequences for the women during the bereavement following an antenatal diagnosis (Lloyd and Laurence, 1985; Lilford et al., 1994; Asplin et al., 2012). The caregiver's emotional sensitivity and possible negative attitudes may complicate the emotional picture for the women (Bracken, 1978; Adler, 1979). A study by Makenzius et al. (2012) highlights that good treatment and individually based care is important for women's satisfaction when they have a termination. The study also emphasises that several women who had terminated their pregnancy not only wanted to discuss their decision but also to receive some understanding and affirmation, as a part of their adjustment. Patients' satisfaction is related to their individual experience in combination with their expectations (Pascoe, 1983) and to how the health care services are provided to meet the condition-specific needs (Marquis et al., 1983; Donabedian, 1988; Guldvog, 1999; Wen and Gustafson 2004). Studies show that methods of measurement of patient satisfaction vary widely (Haggerty, 2010) and the results of satisfaction surveys need to be interpreted with caution (Van Teijlingen et al., 2003). Patients' views of what is important in relation to the care they receive may be seen as an aspect of quality of care (Davies and Ware, 1988; Felce and Perry 1995; Calnan and Rowe, 2006; Vuori, 2007). Caregivers need to be aware that when an abortion is undertaken for reasons of fetal abnormality, the effects can be serious and long lasting and a strong and persisting grief, similar to that experienced for a stillbirth, is likely (Elder and Laurence, 1991; Zeanah et al., 1993; Salvesen et al., 1997). Little research has been done on women's experiences of termination. Fetal diagnosis involves ethical and moral issues and is a subject of an ongoing debate in our society. Better information is needed about how to reduce the negative impact of the women's well-being of the risk factors related to termination. The quality of the structure around the treatment of these women, who are in a potentially vulnerable situation, has to be improved. It is therefore important to enhance our understanding about women's experiences and reactions when a fetal malformation is detected. It is important to learn more about how we as professionals can develop care in consultation with those needing a specialised nursing because of a termination. The aim of the study was to explore what women who have had a pregnancy termination due to a detected fetal malformation perceive as being important in their encounters with caregivers for promoting their healthy adjustment and well-being.
February 2010 from four major close by clinics in the Stockholm area, in Sweden. The clinics were chosen because they specialised in ultrasound examination. The clinics were contacted and informed about the study verbally and through written information about the study. Written consent was obtained from the director of the clinic. Women carrying a fetus with sex chromosome abnormalities, which might be on the borderline of what can be regarded as normal, were excluded to avoid influencing the women to perceive these babies as abnormal. The women were informed verbally by caregivers at the ultrasound units about the aim and the method of the study and given written information as well. Later, the first author contacted them by telephone to confirm participation. Written consent from the women was obtained at the time of interview as well. None of the women declined to participate. Interviews were performed six months after termination so as not to interfere in a possible new pregnancy. Data collection method The first author, a registered midwife who has worked for several years as an ultrasonographer and is educated in interview techniques, conducted the interviews. She did not contribute to the care of the recruited women. The informants chose the time and setting for their interview. A semi-structured interview guide ensured that the same basic questions were used in all interviews (Patton, 2002). The participants were first asked to describe their experience in receiving the information about the results of the ultrasound examination. Further clarifying questions were asked about care, treatment and support. The informants were then invited to supplement the information with anything else they wanted to share. All the interviews were audio taped and transcribed verbatim by the first author. The interviews were performed consecutive and numbered with 1P (interview participant). Data analysis
Methods
Qualitative content analysis (latent) was chosen to gain a more deep understanding compared to only descriptive analysis (Morse and Field 1995; Graneheim and Lundman, 2004). It is a flexible method for analysing text that focuses on the characteristics of language as communication, with attention to the relationship between smaller units in the text and the content or contextual meaning of the whole (Hsieh and Shannon, 2005). The analysis was performed in six steps: (1) the first author listened to and read through the interviews several times to obtain an overall impression of the material; (2) meaning units (words, sentences, or paragraphs related to each other through their content and context) were identified; (3) meaning units were condensed to preserve relevant core expressions; (4) units were coded and categorised into subcategories; (5) categories were built from the subcategories; (6) after a process of interpretation, focusing on discovering underlying meanings of the words or the content, categories were united in a comprehensive theme (Morse and Field 1995; Graneheim and Lundman, 2004). The validation of all steps was considered carefully; the first and last authors checked the analysis step two to six independently and discussed their findings several times before reaching final agreement.
Design and setting
Ethical considerations
This is an interview-based study of pregnant women with a malformed fetus, diagnosed by ultrasound, who independent of the severity of the malformation were invited to participate in the study. The participants were recruited between May 2008 and
A prerequisite for the authors was to obtain written consent and to ensure that the consenting women understood their right to withdraw from the study. Asking women for their consent soon after they have been given information about a fetal malformation
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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puts both the woman and the person asking for consent in an awkward situation. We chose to let the ultrasound specialist, who had diagnosed the fetal anomaly, ask the woman for her consent to be contacted by the researcher. If she accepted, the woman was later contacted by telephone and asked for her consent to be interviewed. We were also prepared to refer the woman to a welfare officer if she indicated she felt depressed. The regional ethical committee, Karolinska Institutet, Dnr; 2007/702-31/1 approved the study.
and met individually came out as a possible way to influence and provide support to facilitate the best care. Being spoken to or treated with dignity and establishing some sort of fellowship were of great value in gaining the support needed to assimilate the loss of the pregnancy:
Findings
On some occasions it may be easier for women to be a part of a system that guides them through managing their difficulties without them having to be asked if they want to be a part of it. One woman said she wished she and her partner had been told about the significance of both parents having a conversation with the caregivers and that it had not been presented as an option:
A total of 11 women, all native Swedes, opting for pregnancy termination due to a fetal malformation were recruited. All except one had a high level of education, corresponding to university. The characteristics of the participants and the type of malformation are presented in Table 1. Women's satisfaction with the support they received from the caregivers after pregnancy termination of a fetal malformation were classified in categories and subcategories, and are presented as two categories and five subcategories that contributed to one main theme: state-dependent communication and in-depth understanding and compassion. State is the condition the woman is experiencing in a particular situation when meeting with the caregivers. The qualitative content analysis, categories, subcategories and main theme are presented in Table 2. Satisfaction with care Communication and how to be acknowledged and thus experience support Many of the women felt a need to be acknowledged as individuals. Throughout all interviews, the concept of being seen
I wished health care services would be better at listening and asking questions about difficulties; if that were the case, I probably would have gained a feeling of support and with that an opportunity rises to affect the situation occurred. Small things have great impact….to be acknowledge means something. IP1.
It has been blocked. I wish there had been a direction about the significance of having a dialogue, provided from the care providers' point of view. I have been lonely; my husband did not want to go to someone to talk about the experience and I did not want to go without him. The standpoint should be that you were offered a standard follow-up with some sort of psychological support. IP3. Gaining control over the situation by having time during conversations with caregivers emerged as crucial. Having control helped people both to adapt to grief and to move to acceptance. One person said that when they had time to ask questions after hearing the results of the autopsy of the fetus, they thought they could move on with their life faster: The conversation in relation to the autopsy was really a nice experience; he probably could have said what he wanted to
Table 1 Characteristics of participants (n¼ 11). Name
Age at diagnosis
Parity Partner
GWn at detection of malformation
GWn at termination
Antenatal diagnosis
Chromosome stated
Trisomy 13 Monosomy 18q syndrome Normal Trisomy 21 Normal Normal Trisomy 18 Trisomy 18 Normal
Women who terminated their pregnancy IP1 IP2
44 25
0 0
Yes Yes
18þ 1 17þ 3
19þ 0 19þ 4
Dandy walker malformation Hydrocephaly
IP3 IP4 IP5 IP6 IP7 IP8 IP9
25 39 37 29 43 38 31
0 1 0 0 0 2 1
Yes Yes Yes Yes Yes Yes Yes
14þ2 18þ 0 13þ2 18þ 4 18þ 0 17þ 2 18þ 2
17þ 0 19þ 1 19þ 6 20 þ4 20 þ0 18þ 2 20 þ5
IP10 IP11
30 34
1 1
Yes Yes
18þ 1 15þ4
19þ 2 16þ 5
Short extremities, narrow thorax Cardiac anomaly (vsd) Hygroma, idiopathic hydrops Diaphragmatic hernia Multiple malformation Multiple malformation Cardiac anomaly (hypoplastic right ventricle syndrome, tricuspid atresia,vsd/tga) Diaphragmatic hernia Multiple malformation
n
Normal Triploid
Gestational week.
Table 2 Qualitative content analysis process, presenting sub-categories, categories and main theme. Subcategory
Category
Main theme
Communication and how to be acknowledged and thus experience support Structure and information In-depth understanding and compassion Sadness and frustration, as reactions and a part of adaptation
Satisfaction with care
State-dependent communication and in depth-understanding and compassion
Management of feelings and reactions
Follow up care
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[talk to] us in 15 minutes, but we had an hour, time for our questions, and we felt we could have asked him about whatsoever, really. IP9. Most of the women felt it was too easy to end up without any follow-up. How the treatment and care were given depended, to a great extent, on the woman herself or on the health care professionals they meet, rather than on established routines: Non-communication between health care providers and patient, but also between wards breeds and contributes to not being able to take decisions. IP10. To ally with other women in the same situation was not a first priority but was experienced as very valuable for those who did so: We meet a couple on the ward for the same matter and we have provided for each other, very nicely. IP6. Structure and information The suggestions for how support could be provided included a strict care plan, a strategy for how to handle crisis after a termination following a detected fetal malformation. Some women experienced good care, both empathic and structured after termination because the caregivers in the ward had a plan. One woman said: We experienced the care as perfect; they were professional and they helped me attach to my boy. IP2. Others experienced the opposite, as one woman described: After termination and not being pregnant anymore, the help you get is bugger all; no one cares about you. IP1. The importance of having a plan for a next visit for follow-up about obstetrical issues was highlighted in some of the interviews: I wish there had been some sort of follow-up; you are lonely in a very special situation. IP5. Discussing the implications of the new information and the diagnosis and prognosis for a future pregnancy as soon as possible was important. It was particularly important for the women of a more advanced age: You want closure. You can't do anything but waiting for the result of the autopsy; until that moment you cannot go on with your life; that's the consequence of a late answer. IP5. The caregivers have to be specific about telling the women about the support they can expect, in verbal and, in some cases, in written communications: To send a letter with [information on] a day to come but no information about to whom, an expert or what. It has to be clarified. IP4. The women also wanted caregivers to develop the capacity to provide correct information. As one woman explained: Oh, this wait to get some answers, and every time I phoned asking this very same question, I received different answers. Very exhausting. You have to be sure of what is applicable' and not make a promise you can't keep. IP2. One woman said that even when she got a phone number and finally had the energy to pick up the phone and call, those who answered were very uninterested:
You feel like a load; you phone some people who get irritated because you're ‘asking wrong questions at wrong places’ and then you are afraid to ask too many questions. You don't want to disturb [them]. IP3. The women's views of what is important about care varied, depending on the given situation. Five of the women expressed their views on what was important for achieving satisfaction with their care in terms of responsibility, continuity, hope and respect. Three of the women were not given enough information to prepare them for the abortion, which is a responsibility of the caregivers. One described what happened as follows: I was not prepared for the ‘little human being’ about 12 in., and neither was the male trainee. My partner had to calm him down because he had quite a high level of stress, and it is not right to abandon your trainee like that, for the sake of both of us. IP6. One woman described a lack of responsibility in relation to providing pain relief. She had to press the caregivers to transfer her from the gynaecology ward to the labour ward where she could receive the pain management: It is of most importance to be sure they can guarantee safety. Being forced to take the situation in your own hands and press the nurse to make a doctor see that you can get pain relief at another ward is not okay. IP4. Most women reported a lack of responsibility in relation to having a concluding conversation: My experience was that no one had responsibility for a proper concluding conversation after termination; maybe [they are] addicted to the pressure and stress on the health care providers. Maybe good routines could have helped. IP1. Some women reported the concluding conversation was handled well: I have to say that the meeting with the specialist afterwards was great, it felt like he had as much time as we needed for all our questions, a very nice feeling. IP7. Some women said that hope has to exist and just receiving the message that someone believes in them is very important: I do not think I am unrealistic; maybe a vicarious hope is what is needed, to present some ways and means instead of saying they have no idea. You need something that carries you the first couple of month of this depressing state. IP1. Most of the women declared that respect for their vulnerable situation should be self-evident. The meeting and treatment of a family in crisis and coming for the pregnancy termination are incredibly important: The professionals know why and when we are coming for this operation. I think there has to be a better way to handle that particular situation. We sat there waiting while the nurses chose to laugh and talk in the corridor instead of taking care of us. It is just an ordinary day for them but the worst thing we had ever done. IP2. For a few of the women who had had a previous abortion, there was also some dignity in clarifying that the pregnancy was wanted: In some sort of way, you want it to be different when you terminate due to a detected malformation than [for] an ordinary abortion. It means so much more when it is a wanted pregnancy. IP3.
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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Most of the women declared that continuity of care plays a significant role in increasing their feeling of safety and, thus, of having the opportunity for good dialogue: It is important that it gets natural, a feeling of understanding between me and the caregivers; it does not work when there are new people involved all the time, even if they are doing a good job. IP11.
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blamed each other instead of uniting and discussing what had happened and looking for needed changes: When everything goes as planned everybody is very capable and very nice; it is when things go the other direction, when it's critical you can see that something fundamental is missing. If you want to be sure of good treatment and care you have to have a plan b. IP6.
In-depth understanding and compassion
Follow-up care
Most of the women thought that an obvious thing to do was to not leave people alone after telling them that their expected child has a malformation. Another was to minimise the number of people involved in the conversation. The women also thought the need to provide support should be self-evident because it is so natural to want help to master feelings. When the women were waiting and uncertain, the situation became chaotic when it appeared there was no support. Most of the women expressed their satisfaction with the support given in relation to the situation between the detection of the fetus malformation and termination. To be reassured by other people, to have the feeling of trust and safety and to receive attention from the health care providers was significant in adapting to the crisis:
Some of the women said that they were shocked and felt very bad for quite a long time after the pregnancy termination:
I felt it was important to be treated well, to be offered a package of good routine care from someone with compassion and an understanding of the situation. My opinion is that the existing routines are not sensible enough for the purpose. IP1.
I was so tired, bodily tired, and all the negative feelings within me were strengthened; I needed help. My life was upside down. IP7.
Even though support was given, it was not always adequate, and the women indicated they felt abandoned in the situation. Some women had automatic follow-up visits and satisfying support, whereas others experienced the opposite: Visits were given for obstetrical issues, but became a disappointment when the caregiver was so unaware of what I been through and was not up-to-date. IP6. Management of feelings and reactions Sadness and frustration as reactions and a part of adaptation Women expressed that it was tough to adapt to the crisis because the outcome did not result in a diagnosis or prognosis for a future pregnancy. And, at the same time, they are burdened with a feeling of having abandoned the child, with the sorrow that follows: You get sad when it comes to details within care and treatment in adjusting to the crisis. That is a thing you don't speak of, nor that the mourning is increasing instead of decreasing after a month. IP5. Contact with a welfare officer was appreciated and was seen as a good and temporary support for a specific event. A few of the women thought it was enough for closure, whereas others felt frustrated and needed more concrete help for handling the unexpected and coping with life and all days of the week again:
There is a sadness about whether you are capable of having a healthy child, and the first three months were like a huge bubble, and no one to turn to. They let go of you too easily. IP3. Opinions on how to handle these feelings differed. The participants agreed that receiving some sort of information about what was going to happen three to six months in the future would have been a big help: After termination, [having] time to adapt to grief is important; it makes acceptance faster. IP4. One woman spoke of her need for help:
Another woman described how she solved her problem with the ups and downs by working but only when she felt she had the strength: To have the possibility of working at home was supportive; to have the freedom of how and when to work according to your mood was of great value. IP5. Many of the women felt despair, which they had to take care of everything by themselves: I was not going to survive if I focused too much on my termination; I had to find another way of thinking. IP1. I think when you have had a cruel situation you need the possibility of reaching someone with your specific questions. IP5. Some women experience stress in familiar surroundings, for example, with friends who became pregnant at the point of their pregnancy's termination or in places where focusing on children was too much to cope with. This, in some cases, led to isolation even if the women did not want that as a solution: I do not have the energy to see my friends so often, but basically I do not believe in avoidance as a strategy. IP1. In addition, when they were given difficult information they experienced a certain vulnerability and thought it was difficult to know what to tell or not tell their friends. They wanted in a way to defend themselves: You tell the story despite your feelings, which tell your mind not to. IP11.
I wanted a more professional psychological help and phoned a therapist, but the high cost, 1200 Swedish crowns per hour was not feasible in the circumstances of me sick-listed and [having] no insurance coverage because a fetus does not count as a legal person before gestational week 22. IP2.
Most of the women were not able to work or do anything; they wanted help with how to think about the future, milestones to reach or ways to behave to feel content with the situation that had occurred:
When a poor experience occurred in a ward in relation to pregnancy termination, the care providers, to a great extent,
I had a hard time to focus the first three months after termination; everything felt quite meaningless and I needed help
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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to get more energy and to concentrate, not just be on the sick list. IP8.
experiences of empathy and structured care that provided satisfaction similar to that found in Fergusson et al. (2009). Support and relationship
Discussion This study is highlighting the importance of caregivers providing adequate psychological support to women who have had a pregnancy terminated due to a detected fetal malformation. It also shows that communication difficulties are still a challenge for caregivers. Information and communication Information includes two important aspects of communication. The first is to communicate the medical status interpreted from the ultrasound investigation in such way that it can be understood by the woman. The second, which is of great psychological importance, is to see this new information as a beginning to the process of adapting the new situation. This may be described like a dialogue focused on upcoming difficulties and similar to a debriefing (Forneris et al., 2013), which allow for women's emotional reactions and increased maternal understanding of their new situation. This way of communication allows professional caregivers to facilitate womens' coping strategies in adapting to information about carrying a malformed fetus. It is important for caregivers to base their communications on the specific needs of the woman, for example, conditions of shock, the need for more information and reassurance about their beliefs and experience of the situation. Psychological aspects after fetal loss Some women seemed to require a deeper psychological understanding than what was given, and would benefit from a more therapeutic discourse. Psychological reactions after the termination of a pregnancy due to fetal malformation in the second trimester are comparable to the reactions (i.e. grief, posttraumatic stress, depression, anxiety and psychiatric disorders) of losing a baby at or before intended birth (Avelin et al., 2013). A woman's appraisal of a given situation and her handling of it determine her well-being. The women's needs for psychological support related to pregnancy termination varied. Psychological support includes offering counselling services, assessing women for mental health outcomes and considering the effect of the loss for the woman and her family. Initially this can be made by spending sufficient time with the parents, mostly listening and answering questions. In some cases, when disclosing deeper psychopathology, the long term effects of a psychoanalysis is needed into the lasting consequences of decision made in the context of antenatal diagnostics (Leuzinger-Bohleber and Teising, 2012). Aside from existing psychological conditions, we could identify emotional distress in this group of women directly after termination and for at least the three following months, a finding quite similar to results reported in other studies (White-Van Mourik et al., 1992; Davies et al., 2005). This confirms previous findings which suggest that early high levels of distress are strongly predictive for later grief complications (Boyle et al., 1996; Stroebe et al., 2005). Most of the women in our study experienced a range of emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration, as in many other studies (Kero et al., 2001, 2004; Hess, 2004; Korenromp et al., 2005; Fergusson et al., 2006, 2009). Still, in this group we could also identify positive reactions to
The relationship to the caregivers has an impact of patient's perceptions of care. Lazarus and Folkman (1984) highlight the necessity of identifying the factors that are central to people controlling their stress and to identifying the intervention method which would effectively target these factors. Lazarus and Folkman's interpretation of stress focuses on the transaction between people and their external environment. To alleviate stress related to the abortion and to achieve awareness, understanding and acceptance, women would most likely benefit from being offered increased support from caregivers (Leithner et al., 2004; Dyer, 2005; Larsson et al., 2010). The correlation between an internal (i.e., own thoughts and feelings) and external (i.e., followups) communication may occur in the form of information at several occasions (Asplin et al., 2013a). Control is an important factor for improving self-management skills (Ziemkiewicz et al., 2013). Satisfaction with support Termination due to fetal malformation may lead to severe consequences not only for the woman but also for her partner. Care, support and understanding are of the equal great importance for these women (Erlandsson et al., 2013). We observed that indepth understanding and compassion is an important factor for realising the feeling of support needed to be able to adapt to crisis. A caregiver's ability to respond to feelings and thoughts related to the pregnancy termination differs and may be a disappointment for some women (Stålhandske et al., 2011). It is of great importance for both woman and caregivers to achieve mutual satisfaction with the information provided. As with earlier studies, (White-Van Mourik et al., 1992; Söderberg et al., 1998), the women in this study emphasised there was a need for special care to ensure they are satisfied with their care. Factors such as a sense of responsibility, hope and respect and provision of continuity of care are crucial to achieve this satisfaction. Organised care Well-organised follow-up care is essential after termination due to fetal malformation. This is a neglected area of care and follow-up that women in the present study are requesting and find lacking. There should always be a second opinion in a tertiary centre for best medical care, i.e. that before 21 þ6 of gestational week the attitude towards the mother and her views are critically important for the decision-making. Before terminating the pregnancy, all involved in the process should be participating in a written care plan. To achieve best of care there has to be a changed approach towards training program in obstetrical ultrasound (Asplin et al., 2013b) as well as in counselling by offering postgraduate education for both midwifes and doctors. Good communication with primary care is necessary to ensure that the woman's maternity-care unit is informed that the pregnancy is not continuing so that support can be offered to the woman. This could be done in form of a visit, either at the maternity-care unit or at home. Some patients can also benefit from being referred to a psychologist for evaluation/treatment. Standard care is often not sufficient for women with a diagnosis of fetal malformation (Statham et al., 2001). All professionals involved in the treatment of the patient should be clear on their role and attend to that the women and her partner are gently guided along a structured plan of care by
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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informed and supportive caregivers. Continuity of care is of particular importance when care is divided between local and tertiary units and different wards at the hospital. Clear lines of communication must always be present. Strengths and limitations The fact that the author who performed the interviews has a professional understanding as an ultrasonographer could be considered as a strength. It created opportunities for asking more detailed questions. On the other hand, her background might have resulted in her influencing the interviews by using leading questions. By using a semi-structured interview guide we ensured that the participants were asked similar questions throughout the course of the study. The analysis is described carefully to make it possible for any researcher to replicate the study. The trustworthiness was strengthened by having two of the authors compare their findings from the analysis. Their analyses were similar but were discussed before reaching final agreement. This study has some limitations that ought to be mentioned. The design and small sample size suggest that the results should be interpreted with caution. Thus, data was collected from four fetal referral centres which may increase the generalisability of the study to smaller units. An approach that will provide the caregivers with the opportunity to gradually build their skills and boost their confidence in being able support these women is wanted. Further, this study would benefit from a follow-up after a longer period and psychological effects due to some studies show that women may cope well initially, but may reappraise the event negatively months or even years later (Trybulski, 2006; Goodwin and Ogden, 2007). The partners were not included in this study. Nevertheless we want to highlight the importance of interviewing women who physically experience the termination and that a fruitful area for further research would be to interview partners as well as health providers. The result should be viewed in a Swedish context and the individual situations for women who consented to participate may not be representative. However, this study could serve as a framework to guide the future structure of information and follow-up care. In conclusion, the most important factors associated with satisfaction in encounters with caregivers regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion.
Author contributions The first author (N.A.) conducted the interviews and started the analysis with the last author (S.G.Ö.). All authors took part in the analysis and writing of the manuscript.
Conflict of interest The authors have declared no conflict of interest.
Acknowledgements We acknowledge our thanks to the women who gave generously of their time. Funding for this study was gratefully received from Goijes Foundation, The Swedish Society of Nursing and the Visually Impaired Association ‘Child Lyckopenning’.
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Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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Midwifery journal homepage: www.elsevier.com/midw
Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care Nina Asplin, RNM, PhD (Midwife)a,b,c,n, Hans Wessel, MD, PhD (Medical Doctor)a,d, Lena Marions, MD, PhD (Associate Professor)a,b, Susanne Georgsson Öhman, RNM, PhD (Associate Professor)a,c a
Department of Women's and Children's Health, Karolinska Institute, SE-17176 Solna, Stockholm, Sweden Karolinska University Hospital, SE-17176 Solna, Stockholm, Sweden c Sophiahemmet University, P.O. Box 5606 SE, 114 86 Stockholm, Sweden d Ultragyn i Sverige AB, Odengatan 69, 113 22 Stockholm, Sweden b
art ic l e i nf o
a b s t r a c t
Article history: Received 15 April 2013 Received in revised form 3 October 2013 Accepted 13 October 2013
Objective: to explore what women who have had a pregnancy terminated due to a detected fetal malformation perceived as having been important in their encounters with caregivers for promoting their healthy adjustment and well-being. Method: an exploratory descriptive design was used. Semi-structured interviews were audiotaped, and the information pathway described. The text was processed through qualitative content analysis in six steps. Setting: four fetal care referral centres in Stockholm, Sweden. Participants: 11 women opting for pregnancy termination due to fetal malformation. Findings: in-depth understanding and compassion are important factors in providing the feeling of support people need so they are able to adapt to crisis. The women emphasised that the caregivers have to communicate a sense of responsibility, hope and respect and provide on-going care for them to feel assured of receiving good medical care and treatment. Aside from existing psychological conditions, the women identified as having emotional distress directly after termination and for at least the following three months. Most women experienced a range of negative emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration. Still some of this group had positive reactions because they experienced empathy and well-organised care. Conclusion and implications for practice: The most important factors associated with satisfaction regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion. The changes in care most often asked for were improvements in the level of standards and provision of adequate support through state-dependent communication, in-depth understanding and compassion, and complete follow-up routines and increased resources. Targeted education for the caregivers may be suited to ensuring that they properly meet needs of their patients. & 2013 Elsevier Ltd. All rights reserved.
Keywords: Fetal abnormality Obstetrical ultrasound Psychological outcome Care
Introduction As improvements in ultrasound technology increase the detection rate of severe structural fetal abnormalities, more women are requesting a pregnancy termination (Levi, 1998; Deborah et al., 2009). Additionally, it has been shown in Sweden that a nuchal translucency ultrasound combined with biochemical analysis in early pregnancy has contributed to 16% increase in terminations of pregnancies because of chromosomal defects, in the last 10 years.
n Corresponding author at: Sophiahemmet University College, P.O. Box 5606 SE, 114 86 Stockholm, Sweden. E-mail address: [email protected] (N. Asplin).
However, the number of newborn children with Down syndrome remains constant (1 per 700–800 births) (National Board of Health and Welfare, 2012). Deciding to terminate a pregnancy can be difficult, and people go through a process to justify the decision (Asplin et al., 2013a). Normative moral principles, (i.e., moral rules and/or moral judgments) are introduced once the choice is made (Garcia et al., 2008). Distress is always a component when dealing with the knowledge of an antenatal malformation detected during an obstetric ultrasound examination. When a pregnancy termination is chosen because of the diagnosed fetal malformation, the pregnancy loss may involve a grieving process with high levels of grief and anxiety (Mashiach et al., 2013). One study reported that grief and post-traumatic symptoms remained between two and seven years after the event (Korenromp et al., 2005) whereas in another
0266-6138/$ - see front matter & 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.midw.2013.10.013
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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study, contrary to what was expected, traumatic stress at four years was not significantly different to that experienced at 14 days (Kersting et al., 2005). Kersting et al. (2009) showed that the neural activation underlying acute grief in women after pregnancy termination due to fetal abnormality is the same as those involved in physical pain. The process is often complicated by feelings about decision-making and the procedure (i.e., late termination and/or induction of labour) that follows (Neidhardt, 1986; Geerinck-Vercammen and Kanhai, 2003; Sandelowski and Barroso, 2005; Ekelin et al., 2008). The therapeutic options are limited. A detected fetal malformation is traumatic both for the parents-to-be and for the caregivers (Demyttenaere et al., 1995; Salvesen et al., 1997). Antenatal health care is the site of some of the most intimate relationships women may have with health care providers (McCoyd, 2009). If the caregivers fail to inform, advise and support the women, it may lead to negative consequences for the women during the bereavement following an antenatal diagnosis (Lloyd and Laurence, 1985; Lilford et al., 1994; Asplin et al., 2012). The caregiver's emotional sensitivity and possible negative attitudes may complicate the emotional picture for the women (Bracken, 1978; Adler, 1979). A study by Makenzius et al. (2012) highlights that good treatment and individually based care is important for women's satisfaction when they have a termination. The study also emphasises that several women who had terminated their pregnancy not only wanted to discuss their decision but also to receive some understanding and affirmation, as a part of their adjustment. Patients' satisfaction is related to their individual experience in combination with their expectations (Pascoe, 1983) and to how the health care services are provided to meet the condition-specific needs (Marquis et al., 1983; Donabedian, 1988; Guldvog, 1999; Wen and Gustafson 2004). Studies show that methods of measurement of patient satisfaction vary widely (Haggerty, 2010) and the results of satisfaction surveys need to be interpreted with caution (Van Teijlingen et al., 2003). Patients' views of what is important in relation to the care they receive may be seen as an aspect of quality of care (Davies and Ware, 1988; Felce and Perry 1995; Calnan and Rowe, 2006; Vuori, 2007). Caregivers need to be aware that when an abortion is undertaken for reasons of fetal abnormality, the effects can be serious and long lasting and a strong and persisting grief, similar to that experienced for a stillbirth, is likely (Elder and Laurence, 1991; Zeanah et al., 1993; Salvesen et al., 1997). Little research has been done on women's experiences of termination. Fetal diagnosis involves ethical and moral issues and is a subject of an ongoing debate in our society. Better information is needed about how to reduce the negative impact of the women's well-being of the risk factors related to termination. The quality of the structure around the treatment of these women, who are in a potentially vulnerable situation, has to be improved. It is therefore important to enhance our understanding about women's experiences and reactions when a fetal malformation is detected. It is important to learn more about how we as professionals can develop care in consultation with those needing a specialised nursing because of a termination. The aim of the study was to explore what women who have had a pregnancy termination due to a detected fetal malformation perceive as being important in their encounters with caregivers for promoting their healthy adjustment and well-being.
February 2010 from four major close by clinics in the Stockholm area, in Sweden. The clinics were chosen because they specialised in ultrasound examination. The clinics were contacted and informed about the study verbally and through written information about the study. Written consent was obtained from the director of the clinic. Women carrying a fetus with sex chromosome abnormalities, which might be on the borderline of what can be regarded as normal, were excluded to avoid influencing the women to perceive these babies as abnormal. The women were informed verbally by caregivers at the ultrasound units about the aim and the method of the study and given written information as well. Later, the first author contacted them by telephone to confirm participation. Written consent from the women was obtained at the time of interview as well. None of the women declined to participate. Interviews were performed six months after termination so as not to interfere in a possible new pregnancy. Data collection method The first author, a registered midwife who has worked for several years as an ultrasonographer and is educated in interview techniques, conducted the interviews. She did not contribute to the care of the recruited women. The informants chose the time and setting for their interview. A semi-structured interview guide ensured that the same basic questions were used in all interviews (Patton, 2002). The participants were first asked to describe their experience in receiving the information about the results of the ultrasound examination. Further clarifying questions were asked about care, treatment and support. The informants were then invited to supplement the information with anything else they wanted to share. All the interviews were audio taped and transcribed verbatim by the first author. The interviews were performed consecutive and numbered with 1P (interview participant). Data analysis
Methods
Qualitative content analysis (latent) was chosen to gain a more deep understanding compared to only descriptive analysis (Morse and Field 1995; Graneheim and Lundman, 2004). It is a flexible method for analysing text that focuses on the characteristics of language as communication, with attention to the relationship between smaller units in the text and the content or contextual meaning of the whole (Hsieh and Shannon, 2005). The analysis was performed in six steps: (1) the first author listened to and read through the interviews several times to obtain an overall impression of the material; (2) meaning units (words, sentences, or paragraphs related to each other through their content and context) were identified; (3) meaning units were condensed to preserve relevant core expressions; (4) units were coded and categorised into subcategories; (5) categories were built from the subcategories; (6) after a process of interpretation, focusing on discovering underlying meanings of the words or the content, categories were united in a comprehensive theme (Morse and Field 1995; Graneheim and Lundman, 2004). The validation of all steps was considered carefully; the first and last authors checked the analysis step two to six independently and discussed their findings several times before reaching final agreement.
Design and setting
Ethical considerations
This is an interview-based study of pregnant women with a malformed fetus, diagnosed by ultrasound, who independent of the severity of the malformation were invited to participate in the study. The participants were recruited between May 2008 and
A prerequisite for the authors was to obtain written consent and to ensure that the consenting women understood their right to withdraw from the study. Asking women for their consent soon after they have been given information about a fetal malformation
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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puts both the woman and the person asking for consent in an awkward situation. We chose to let the ultrasound specialist, who had diagnosed the fetal anomaly, ask the woman for her consent to be contacted by the researcher. If she accepted, the woman was later contacted by telephone and asked for her consent to be interviewed. We were also prepared to refer the woman to a welfare officer if she indicated she felt depressed. The regional ethical committee, Karolinska Institutet, Dnr; 2007/702-31/1 approved the study.
and met individually came out as a possible way to influence and provide support to facilitate the best care. Being spoken to or treated with dignity and establishing some sort of fellowship were of great value in gaining the support needed to assimilate the loss of the pregnancy:
Findings
On some occasions it may be easier for women to be a part of a system that guides them through managing their difficulties without them having to be asked if they want to be a part of it. One woman said she wished she and her partner had been told about the significance of both parents having a conversation with the caregivers and that it had not been presented as an option:
A total of 11 women, all native Swedes, opting for pregnancy termination due to a fetal malformation were recruited. All except one had a high level of education, corresponding to university. The characteristics of the participants and the type of malformation are presented in Table 1. Women's satisfaction with the support they received from the caregivers after pregnancy termination of a fetal malformation were classified in categories and subcategories, and are presented as two categories and five subcategories that contributed to one main theme: state-dependent communication and in-depth understanding and compassion. State is the condition the woman is experiencing in a particular situation when meeting with the caregivers. The qualitative content analysis, categories, subcategories and main theme are presented in Table 2. Satisfaction with care Communication and how to be acknowledged and thus experience support Many of the women felt a need to be acknowledged as individuals. Throughout all interviews, the concept of being seen
I wished health care services would be better at listening and asking questions about difficulties; if that were the case, I probably would have gained a feeling of support and with that an opportunity rises to affect the situation occurred. Small things have great impact….to be acknowledge means something. IP1.
It has been blocked. I wish there had been a direction about the significance of having a dialogue, provided from the care providers' point of view. I have been lonely; my husband did not want to go to someone to talk about the experience and I did not want to go without him. The standpoint should be that you were offered a standard follow-up with some sort of psychological support. IP3. Gaining control over the situation by having time during conversations with caregivers emerged as crucial. Having control helped people both to adapt to grief and to move to acceptance. One person said that when they had time to ask questions after hearing the results of the autopsy of the fetus, they thought they could move on with their life faster: The conversation in relation to the autopsy was really a nice experience; he probably could have said what he wanted to
Table 1 Characteristics of participants (n¼ 11). Name
Age at diagnosis
Parity Partner
GWn at detection of malformation
GWn at termination
Antenatal diagnosis
Chromosome stated
Trisomy 13 Monosomy 18q syndrome Normal Trisomy 21 Normal Normal Trisomy 18 Trisomy 18 Normal
Women who terminated their pregnancy IP1 IP2
44 25
0 0
Yes Yes
18þ 1 17þ 3
19þ 0 19þ 4
Dandy walker malformation Hydrocephaly
IP3 IP4 IP5 IP6 IP7 IP8 IP9
25 39 37 29 43 38 31
0 1 0 0 0 2 1
Yes Yes Yes Yes Yes Yes Yes
14þ2 18þ 0 13þ2 18þ 4 18þ 0 17þ 2 18þ 2
17þ 0 19þ 1 19þ 6 20 þ4 20 þ0 18þ 2 20 þ5
IP10 IP11
30 34
1 1
Yes Yes
18þ 1 15þ4
19þ 2 16þ 5
Short extremities, narrow thorax Cardiac anomaly (vsd) Hygroma, idiopathic hydrops Diaphragmatic hernia Multiple malformation Multiple malformation Cardiac anomaly (hypoplastic right ventricle syndrome, tricuspid atresia,vsd/tga) Diaphragmatic hernia Multiple malformation
n
Normal Triploid
Gestational week.
Table 2 Qualitative content analysis process, presenting sub-categories, categories and main theme. Subcategory
Category
Main theme
Communication and how to be acknowledged and thus experience support Structure and information In-depth understanding and compassion Sadness and frustration, as reactions and a part of adaptation
Satisfaction with care
State-dependent communication and in depth-understanding and compassion
Management of feelings and reactions
Follow up care
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[talk to] us in 15 minutes, but we had an hour, time for our questions, and we felt we could have asked him about whatsoever, really. IP9. Most of the women felt it was too easy to end up without any follow-up. How the treatment and care were given depended, to a great extent, on the woman herself or on the health care professionals they meet, rather than on established routines: Non-communication between health care providers and patient, but also between wards breeds and contributes to not being able to take decisions. IP10. To ally with other women in the same situation was not a first priority but was experienced as very valuable for those who did so: We meet a couple on the ward for the same matter and we have provided for each other, very nicely. IP6. Structure and information The suggestions for how support could be provided included a strict care plan, a strategy for how to handle crisis after a termination following a detected fetal malformation. Some women experienced good care, both empathic and structured after termination because the caregivers in the ward had a plan. One woman said: We experienced the care as perfect; they were professional and they helped me attach to my boy. IP2. Others experienced the opposite, as one woman described: After termination and not being pregnant anymore, the help you get is bugger all; no one cares about you. IP1. The importance of having a plan for a next visit for follow-up about obstetrical issues was highlighted in some of the interviews: I wish there had been some sort of follow-up; you are lonely in a very special situation. IP5. Discussing the implications of the new information and the diagnosis and prognosis for a future pregnancy as soon as possible was important. It was particularly important for the women of a more advanced age: You want closure. You can't do anything but waiting for the result of the autopsy; until that moment you cannot go on with your life; that's the consequence of a late answer. IP5. The caregivers have to be specific about telling the women about the support they can expect, in verbal and, in some cases, in written communications: To send a letter with [information on] a day to come but no information about to whom, an expert or what. It has to be clarified. IP4. The women also wanted caregivers to develop the capacity to provide correct information. As one woman explained: Oh, this wait to get some answers, and every time I phoned asking this very same question, I received different answers. Very exhausting. You have to be sure of what is applicable' and not make a promise you can't keep. IP2. One woman said that even when she got a phone number and finally had the energy to pick up the phone and call, those who answered were very uninterested:
You feel like a load; you phone some people who get irritated because you're ‘asking wrong questions at wrong places’ and then you are afraid to ask too many questions. You don't want to disturb [them]. IP3. The women's views of what is important about care varied, depending on the given situation. Five of the women expressed their views on what was important for achieving satisfaction with their care in terms of responsibility, continuity, hope and respect. Three of the women were not given enough information to prepare them for the abortion, which is a responsibility of the caregivers. One described what happened as follows: I was not prepared for the ‘little human being’ about 12 in., and neither was the male trainee. My partner had to calm him down because he had quite a high level of stress, and it is not right to abandon your trainee like that, for the sake of both of us. IP6. One woman described a lack of responsibility in relation to providing pain relief. She had to press the caregivers to transfer her from the gynaecology ward to the labour ward where she could receive the pain management: It is of most importance to be sure they can guarantee safety. Being forced to take the situation in your own hands and press the nurse to make a doctor see that you can get pain relief at another ward is not okay. IP4. Most women reported a lack of responsibility in relation to having a concluding conversation: My experience was that no one had responsibility for a proper concluding conversation after termination; maybe [they are] addicted to the pressure and stress on the health care providers. Maybe good routines could have helped. IP1. Some women reported the concluding conversation was handled well: I have to say that the meeting with the specialist afterwards was great, it felt like he had as much time as we needed for all our questions, a very nice feeling. IP7. Some women said that hope has to exist and just receiving the message that someone believes in them is very important: I do not think I am unrealistic; maybe a vicarious hope is what is needed, to present some ways and means instead of saying they have no idea. You need something that carries you the first couple of month of this depressing state. IP1. Most of the women declared that respect for their vulnerable situation should be self-evident. The meeting and treatment of a family in crisis and coming for the pregnancy termination are incredibly important: The professionals know why and when we are coming for this operation. I think there has to be a better way to handle that particular situation. We sat there waiting while the nurses chose to laugh and talk in the corridor instead of taking care of us. It is just an ordinary day for them but the worst thing we had ever done. IP2. For a few of the women who had had a previous abortion, there was also some dignity in clarifying that the pregnancy was wanted: In some sort of way, you want it to be different when you terminate due to a detected malformation than [for] an ordinary abortion. It means so much more when it is a wanted pregnancy. IP3.
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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Most of the women declared that continuity of care plays a significant role in increasing their feeling of safety and, thus, of having the opportunity for good dialogue: It is important that it gets natural, a feeling of understanding between me and the caregivers; it does not work when there are new people involved all the time, even if they are doing a good job. IP11.
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blamed each other instead of uniting and discussing what had happened and looking for needed changes: When everything goes as planned everybody is very capable and very nice; it is when things go the other direction, when it's critical you can see that something fundamental is missing. If you want to be sure of good treatment and care you have to have a plan b. IP6.
In-depth understanding and compassion
Follow-up care
Most of the women thought that an obvious thing to do was to not leave people alone after telling them that their expected child has a malformation. Another was to minimise the number of people involved in the conversation. The women also thought the need to provide support should be self-evident because it is so natural to want help to master feelings. When the women were waiting and uncertain, the situation became chaotic when it appeared there was no support. Most of the women expressed their satisfaction with the support given in relation to the situation between the detection of the fetus malformation and termination. To be reassured by other people, to have the feeling of trust and safety and to receive attention from the health care providers was significant in adapting to the crisis:
Some of the women said that they were shocked and felt very bad for quite a long time after the pregnancy termination:
I felt it was important to be treated well, to be offered a package of good routine care from someone with compassion and an understanding of the situation. My opinion is that the existing routines are not sensible enough for the purpose. IP1.
I was so tired, bodily tired, and all the negative feelings within me were strengthened; I needed help. My life was upside down. IP7.
Even though support was given, it was not always adequate, and the women indicated they felt abandoned in the situation. Some women had automatic follow-up visits and satisfying support, whereas others experienced the opposite: Visits were given for obstetrical issues, but became a disappointment when the caregiver was so unaware of what I been through and was not up-to-date. IP6. Management of feelings and reactions Sadness and frustration as reactions and a part of adaptation Women expressed that it was tough to adapt to the crisis because the outcome did not result in a diagnosis or prognosis for a future pregnancy. And, at the same time, they are burdened with a feeling of having abandoned the child, with the sorrow that follows: You get sad when it comes to details within care and treatment in adjusting to the crisis. That is a thing you don't speak of, nor that the mourning is increasing instead of decreasing after a month. IP5. Contact with a welfare officer was appreciated and was seen as a good and temporary support for a specific event. A few of the women thought it was enough for closure, whereas others felt frustrated and needed more concrete help for handling the unexpected and coping with life and all days of the week again:
There is a sadness about whether you are capable of having a healthy child, and the first three months were like a huge bubble, and no one to turn to. They let go of you too easily. IP3. Opinions on how to handle these feelings differed. The participants agreed that receiving some sort of information about what was going to happen three to six months in the future would have been a big help: After termination, [having] time to adapt to grief is important; it makes acceptance faster. IP4. One woman spoke of her need for help:
Another woman described how she solved her problem with the ups and downs by working but only when she felt she had the strength: To have the possibility of working at home was supportive; to have the freedom of how and when to work according to your mood was of great value. IP5. Many of the women felt despair, which they had to take care of everything by themselves: I was not going to survive if I focused too much on my termination; I had to find another way of thinking. IP1. I think when you have had a cruel situation you need the possibility of reaching someone with your specific questions. IP5. Some women experience stress in familiar surroundings, for example, with friends who became pregnant at the point of their pregnancy's termination or in places where focusing on children was too much to cope with. This, in some cases, led to isolation even if the women did not want that as a solution: I do not have the energy to see my friends so often, but basically I do not believe in avoidance as a strategy. IP1. In addition, when they were given difficult information they experienced a certain vulnerability and thought it was difficult to know what to tell or not tell their friends. They wanted in a way to defend themselves: You tell the story despite your feelings, which tell your mind not to. IP11.
I wanted a more professional psychological help and phoned a therapist, but the high cost, 1200 Swedish crowns per hour was not feasible in the circumstances of me sick-listed and [having] no insurance coverage because a fetus does not count as a legal person before gestational week 22. IP2.
Most of the women were not able to work or do anything; they wanted help with how to think about the future, milestones to reach or ways to behave to feel content with the situation that had occurred:
When a poor experience occurred in a ward in relation to pregnancy termination, the care providers, to a great extent,
I had a hard time to focus the first three months after termination; everything felt quite meaningless and I needed help
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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to get more energy and to concentrate, not just be on the sick list. IP8.
experiences of empathy and structured care that provided satisfaction similar to that found in Fergusson et al. (2009). Support and relationship
Discussion This study is highlighting the importance of caregivers providing adequate psychological support to women who have had a pregnancy terminated due to a detected fetal malformation. It also shows that communication difficulties are still a challenge for caregivers. Information and communication Information includes two important aspects of communication. The first is to communicate the medical status interpreted from the ultrasound investigation in such way that it can be understood by the woman. The second, which is of great psychological importance, is to see this new information as a beginning to the process of adapting the new situation. This may be described like a dialogue focused on upcoming difficulties and similar to a debriefing (Forneris et al., 2013), which allow for women's emotional reactions and increased maternal understanding of their new situation. This way of communication allows professional caregivers to facilitate womens' coping strategies in adapting to information about carrying a malformed fetus. It is important for caregivers to base their communications on the specific needs of the woman, for example, conditions of shock, the need for more information and reassurance about their beliefs and experience of the situation. Psychological aspects after fetal loss Some women seemed to require a deeper psychological understanding than what was given, and would benefit from a more therapeutic discourse. Psychological reactions after the termination of a pregnancy due to fetal malformation in the second trimester are comparable to the reactions (i.e. grief, posttraumatic stress, depression, anxiety and psychiatric disorders) of losing a baby at or before intended birth (Avelin et al., 2013). A woman's appraisal of a given situation and her handling of it determine her well-being. The women's needs for psychological support related to pregnancy termination varied. Psychological support includes offering counselling services, assessing women for mental health outcomes and considering the effect of the loss for the woman and her family. Initially this can be made by spending sufficient time with the parents, mostly listening and answering questions. In some cases, when disclosing deeper psychopathology, the long term effects of a psychoanalysis is needed into the lasting consequences of decision made in the context of antenatal diagnostics (Leuzinger-Bohleber and Teising, 2012). Aside from existing psychological conditions, we could identify emotional distress in this group of women directly after termination and for at least the three following months, a finding quite similar to results reported in other studies (White-Van Mourik et al., 1992; Davies et al., 2005). This confirms previous findings which suggest that early high levels of distress are strongly predictive for later grief complications (Boyle et al., 1996; Stroebe et al., 2005). Most of the women in our study experienced a range of emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration, as in many other studies (Kero et al., 2001, 2004; Hess, 2004; Korenromp et al., 2005; Fergusson et al., 2006, 2009). Still, in this group we could also identify positive reactions to
The relationship to the caregivers has an impact of patient's perceptions of care. Lazarus and Folkman (1984) highlight the necessity of identifying the factors that are central to people controlling their stress and to identifying the intervention method which would effectively target these factors. Lazarus and Folkman's interpretation of stress focuses on the transaction between people and their external environment. To alleviate stress related to the abortion and to achieve awareness, understanding and acceptance, women would most likely benefit from being offered increased support from caregivers (Leithner et al., 2004; Dyer, 2005; Larsson et al., 2010). The correlation between an internal (i.e., own thoughts and feelings) and external (i.e., followups) communication may occur in the form of information at several occasions (Asplin et al., 2013a). Control is an important factor for improving self-management skills (Ziemkiewicz et al., 2013). Satisfaction with support Termination due to fetal malformation may lead to severe consequences not only for the woman but also for her partner. Care, support and understanding are of the equal great importance for these women (Erlandsson et al., 2013). We observed that indepth understanding and compassion is an important factor for realising the feeling of support needed to be able to adapt to crisis. A caregiver's ability to respond to feelings and thoughts related to the pregnancy termination differs and may be a disappointment for some women (Stålhandske et al., 2011). It is of great importance for both woman and caregivers to achieve mutual satisfaction with the information provided. As with earlier studies, (White-Van Mourik et al., 1992; Söderberg et al., 1998), the women in this study emphasised there was a need for special care to ensure they are satisfied with their care. Factors such as a sense of responsibility, hope and respect and provision of continuity of care are crucial to achieve this satisfaction. Organised care Well-organised follow-up care is essential after termination due to fetal malformation. This is a neglected area of care and follow-up that women in the present study are requesting and find lacking. There should always be a second opinion in a tertiary centre for best medical care, i.e. that before 21 þ6 of gestational week the attitude towards the mother and her views are critically important for the decision-making. Before terminating the pregnancy, all involved in the process should be participating in a written care plan. To achieve best of care there has to be a changed approach towards training program in obstetrical ultrasound (Asplin et al., 2013b) as well as in counselling by offering postgraduate education for both midwifes and doctors. Good communication with primary care is necessary to ensure that the woman's maternity-care unit is informed that the pregnancy is not continuing so that support can be offered to the woman. This could be done in form of a visit, either at the maternity-care unit or at home. Some patients can also benefit from being referred to a psychologist for evaluation/treatment. Standard care is often not sufficient for women with a diagnosis of fetal malformation (Statham et al., 2001). All professionals involved in the treatment of the patient should be clear on their role and attend to that the women and her partner are gently guided along a structured plan of care by
Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i
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informed and supportive caregivers. Continuity of care is of particular importance when care is divided between local and tertiary units and different wards at the hospital. Clear lines of communication must always be present. Strengths and limitations The fact that the author who performed the interviews has a professional understanding as an ultrasonographer could be considered as a strength. It created opportunities for asking more detailed questions. On the other hand, her background might have resulted in her influencing the interviews by using leading questions. By using a semi-structured interview guide we ensured that the participants were asked similar questions throughout the course of the study. The analysis is described carefully to make it possible for any researcher to replicate the study. The trustworthiness was strengthened by having two of the authors compare their findings from the analysis. Their analyses were similar but were discussed before reaching final agreement. This study has some limitations that ought to be mentioned. The design and small sample size suggest that the results should be interpreted with caution. Thus, data was collected from four fetal referral centres which may increase the generalisability of the study to smaller units. An approach that will provide the caregivers with the opportunity to gradually build their skills and boost their confidence in being able support these women is wanted. Further, this study would benefit from a follow-up after a longer period and psychological effects due to some studies show that women may cope well initially, but may reappraise the event negatively months or even years later (Trybulski, 2006; Goodwin and Ogden, 2007). The partners were not included in this study. Nevertheless we want to highlight the importance of interviewing women who physically experience the termination and that a fruitful area for further research would be to interview partners as well as health providers. The result should be viewed in a Swedish context and the individual situations for women who consented to participate may not be representative. However, this study could serve as a framework to guide the future structure of information and follow-up care. In conclusion, the most important factors associated with satisfaction in encounters with caregivers regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion.
Author contributions The first author (N.A.) conducted the interviews and started the analysis with the last author (S.G.Ö.). All authors took part in the analysis and writing of the manuscript.
Conflict of interest The authors have declared no conflict of interest.
Acknowledgements We acknowledge our thanks to the women who gave generously of their time. Funding for this study was gratefully received from Goijes Foundation, The Swedish Society of Nursing and the Visually Impaired Association ‘Child Lyckopenning’.
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Please cite this article as: Asplin, N., et al., Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care. Midwifery (2013), http://dx.doi.org/10.1016/j.midw.2013.10.013i