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Clinical relationship and psychological experience of hospitalization in “high-risk” pregnancy
European Journal of Obstetrics & Gynecology and Reproductive Biology 149 (2010) 136–142
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European Journal of Obstetrics & Gynecology and Reproductive Biology journal homepage: www.elsevier.com/locate/ejogrb
Clinical relationship and psychological experience of hospitalization in ‘‘high-risk’’ pregnancy Melissa L. Pozzo a,b,1, Valentina Brusati c,2, Irene Cetin b,2,* a
Fondazione IRCCS Policlinico, Mangiagalli e Regina Elena, Milan, Italy Unit of Obstetrics and Gynecology, Department of Clinical Sciences L. Sacco, University of Milan, Via G. B. Grassi, 74, 20151 Milan, Italy c Doctorate in Sciences of Prenatal Development, Fetal Diagnosis and Therapy, University of Milan, Milan, Italy b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 15 July 2009 Received in revised form 9 November 2009 Accepted 11 December 2009
Objective: To explore, in a systemic view, the reciprocal perceived relationship between hospitalized ‘‘high-risk’’ pregnant women with uncertain fetal prognosis and the multidisciplinary prenatal care team, by the use of specifically developed questionnaires. Study design: A pilot study in a high-risk pregnancy department. We enrolled 52 pregnant hospitalized women and 17 clinical operators and we interviewed them by the use of open-ended and close-ended question questionnaires. Results: We described patients’ perception of doctors and staff communication, patients’ feelings and emotions relating to ‘‘high-risk’’ pregnancy and hospitalization, operators’ emotions, perceived facilitating factors, difficulties and resources. In a ‘‘high-risk’’ pregnancy condition, some difficulties in the relationship between hospitalized women and health operators occur. For inpatients the emotional difficulties were mostly connected to the pathologic situation and the contingent loneliness. Although the majority of women said that they understood staff communication and that they established a basic trust towards the entire clinical staff, there was a request for greater outspokenness. For clinical operators the relational and communication difficulties specifically concerned the overall management of the relationship with the patients studied. In particular, they perceived themselves to be called to a greater clearness and clinical reliability. Conclusions: Overcoming the dyadic model of the doctor–patient relationship (in a systemic view) by incorporating clinical operators’ and inpatients’ points of view, seems a useful tool to highlight critical and facilitating factors about the relationship and communication in ‘‘high-risk’’ conditions. Condensation Overcoming the dyadic vision of the doctor–patient relationship, by crossing clinical operator’s and inpatient’s points of view, seems a useful tool to highlight critical and facilitating factors about the relationship and communication in ‘‘high-risk’’ pregnancy conditions. ß 2010 Elsevier Ireland Ltd. All rights reserved.
Keywords: Clinical communication ‘‘High-risk’’ pregnancy Systemic view
1. Introduction Since the second half of the 1980s, doctor–patient communication and relationships have been discussed and analyzed by a growing number of authors, and have been observed from a variety of points of view [1–18]. Doctor–patient interaction has been described as the main determinant of the accuracy and completeness of patient data collection, diagnostic accuracy, efficacy in the encounter, compliance, the patient’s understanding of problems, and the patient’s and physician’s satisfaction. In
* Corresponding author. Tel.: +39 02 50319804; fax: +39 02 50319806. E-mail address: [email protected] (I. Cetin). 1 Psychologist, psychotherapist receiver of a scholarship from Fondazione Policlinico, Mangiagalli e Regina Elena. 2 MD- Specialist in Maternal-Fetal medicine. 0301-2115/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ejogrb.2009.12.009
other words, it has been represented as the principal medium of care [19]. During the last decade, in particular, doctor–patient interaction has been mostly studied by clinicians and professionals dealing with prenatal diagnosis, and increased attention has been paid to the difficulty of ‘‘breaking bad news’’ [20]. However, there is a paucity of investigation on doctor–patient communication in prenatal care as well as research on the psychological experience of hospitalization due to high-risk pregnancy [21]. Clinician-patient interaction is particularly difficult when medical issues are the source of fear, uncertainty and unpredictable outcomes, as often happens when dealing with problems concerning pregnancy and delivering babies. Conditions defined as high-risk pregnancies are associated with elevated neonatal mortality, morbidity and poor neuro-development in childhood. In such situations, prognosis is often expressed in terms of percentage of ‘‘neonatal survival’’ and ‘‘neonatal intact survival’’, associated with a specific condition and
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depending on gestational age [22]. The uncertainty about evolution and timing of delivery adds drama in a situation in which the subjects are profoundly oriented towards life [20]. Furthermore, researchers and clinicians are starting to reconsider the traditional expression ‘‘doctor–patient relationship’’ and to criticize the idea of a bipolar interaction between them. Women admitted to a hospital department (along with their family, friends, colleagues, spiritual guides, etc.) do not refer to one physician only, but interact with a ‘‘therapeutic team’’ consisting of various health professionals: different specialists, residents, nurses, midwives, social assistants, psychologists, etc. [23]. Nowadays, the expression ‘‘clinical relationship’’ or ‘‘health relationship’’ seems preferable and much more representative of the complexity of the context. Thereby, according to several authors [24–26], overcoming the dyadic vision of the doctor–patient relationship, and including the relational world of the patient and the entire working team, means being able to adopt an all-round viewpoint that gives strength to the observations of the individual (either patient or hospital operator), and to the relational rules and interactions between them. In other words, a systemicrelational view may be useful in this context [27–29]. For these reasons, we decided to interview ‘‘high-risk’’ pregnant women and the multidisciplinary prenatal care team in order to describe their reciprocally perceived relationship. In particular, we explored inpatients’ perception of doctors and staff communications, patients’ feelings and emotions relating to ‘‘high-risk’’ pregnancy and hospitalization, as well as operators’ emotions, perceived facilitating factors, difficulties and resources. To achieve this aim, patients’ and operators’ questionnaires were specifically created to level the gathering of information for the entire sample.
2. Materials and methods We carried out a pilot study. Women and clinical workers were enrolled at the high-risk pregnancy clinic in the Department of Obstetrics, Gynecology and Neonatology ‘‘L. Mangiagalli’’ of Milan (Italy), between December 2006 and December 2007. During this period of time the medical staff as well as the clinical strategies and protocols did not change. The study was approved by the Hospital Ethical Committee and informed consent was obtained from all patients and caregivers. 2.1. Patients Fifty-two pregnant women (41 singletons, 7 twin pregnancies and 4 triplet pregnancies) were recruited. They were admitted to the high-risk clinic between 18 and 37 weeks of gestational age, due to pregnancies complicated by conditions associated with uncertain fetal prognosis (Table 1) like preterm labor, preterm premature rupture of the membranes, intrauterine growth restriction, threatened miscarriage and cervical incompetence. The diagnosis was communicated to the patients at the time of admission by the doctor in the emergency room. Women not able to fully understand the Italian language were excluded from this study. Thirty-nine women (75%) were Italian and 13 women (25%) had different nationalities. Patients’ characteristics and neonatal outcomes are presented in Table 2. After three to five days from admission, women were asked to answer an 11-question questionnaire consisting of close-ended questions (Tables 3a and 3b). The questionnaire was structured in two areas. The first area (seven questions) studied the patient’s perception of doctors and staff communication; the second area (four questions) explored patient’s emotions relating to high-risk pregnancy and hospitalization. Questionnaires were discussed in a brief interview in order to better understand patients’ answers. Interviews were carried out
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Table 1 Diagnosis at the time of admission. Diagnosis
Number of patients
Preterm labor Preterm premature rupture of the membranes (pPROM) Intrauterine growth restriction (IUGR) Threatened miscarriage Cervical incompetence
27 3 17 2 3
individually and conducted by the same research psychologist with clinical experience (M.L.P.). 2.2. Clinical operators All clinical operators (n = 26) of the High-Risk Pregnancy Clinic (obstetricians, midwives, fellows, residents and students) were asked to complete a six open-ended question questionnaire (Tables 4–6). Three questions explored perceived difficulties in dealing with the patients and in communicating the dubious prognosis and adverse outcomes; three questions explored factors perceived as facilitating, resources and operative suggestions. The Table 2 Patients’ characteristics. Variable
Number of patients
Maternal age (22–48 years) 20–29 30–39 40–49
17 28 7
Gestational age (18–37 weeks) 18–24 25–28 29–33 34–37
6 13 25 8
Educational level Junior high school Senior high school College degree Not available
8 24 18 2
Marital status Single Married Cohabitant Divorced
3 41 6 2
Obstetrical history Primigravida Previous miscarriage Previous voluntary termination of pregnancy (<90 days post-conceptional age) Previous live born children Previous stillborn Previous termination of pregnancy >90 days post-conceptional age
28 33 3 18 2 2
Type of conception Spontaneous Assisted reproduction
42 10
Type of delivery Spontaneous Cesarean section Not available
15 33 4
Neonatal outcomesa Gestational age at delivery Baby weight IUGR Emergency caesarean section Neonatal deaths
36 (30–40) weeksb 2348.3 (875–4170) gb 11 5 4
a b
Available for 48 women. Mean (range).
M.L. Pozzo et al. / European Journal of Obstetrics & Gynecology and Reproductive Biology 149 (2010) 136–142
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Table 3a Hospitalized pregnant women’s answers relating to the perception of staff communication, expressed as frequency and percentage. Question
Answers
Frequency
Percentage (%)
(1) Do you believe you understood the admission diagnosis?
Yes completely Yes, partially Not completely Absolutely not
43 0 9 0
83 0 17 0
(2) Do you reckon it would be useful to receive an informative leaflet that better explains the characteristics of the diagnosis you received?
Yes No
35 17
67 33
(3) Do you believe you understood the fetal prognosis?
Yes completely Yes, partially Not completely Absolutely not
36 12 3 1
69 23 6 2
(4) Do you believe you understood the maternal prognosis?
Yes completely Yes, partially Not completely Absolutely not
38 11 2 1
73 21 4 2
(9) Do you agree with the decisions the clinical staff made about your pregnancy?
Yes completely Yes, partially Not completely Absolutely not
48 3 1 0
92 6 2 0
(10) Do you think that your partner and relatives agree with the decisions the clinical staff made about your pregnancy?
Yes completely Yes, partially Not completely Absolutely not
47 4 1 0
90 8 2 0
(11) If the hypothesized pathology is still not well defined and the diagnosis and prognosis are uncertain, would you prefer to be immediately informed of all the possible risks that the medical staff might identify, or would you prefer to wait for a more clear prognosis?
Immediately informed Wait for a more clear prognosis
48 4
92 8
Table 3b Hospitalized pregnant women’ answers about their emotions relating to ‘‘high-risk’’ pregnancy and hospitalization, expressed as percentage. Question
Answers
Percentage (%)
(5) What do you feel about the actual pregnancy?
Joy Apprehension Concern Anxiety Sadness Abashment Fear Vulnerability Loneliness Satisfaction Feelings of responsibility Powerlessness Disbelief
60 9 7 6 4 3 3 3 1 1 1 1 1
(6) What did you feel when the medical staff communicated the diagnosis to you?a
Dread Fear Astonishment Preoccupation Relief Anxiety Sadness Abashment Anger Apprehension Calmness
29 17 15 14 11 5 3 2 2 1 1
(7) Do you feel lonely in this critical moment?
Yes completely Yes, partially Not completely Absolutely not
0 42 2 56
(8) Who would you like to feel closer?
No one Partner Relatives Physician Psychologist Friends
51 20 18 5 4 2
a
a
Percentage over the total number of answers.
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Table 4 Operators’ answers relating to their emotions, perceived facilitating factors and difficulties, expressed as frequency and percentage. Operators’ questionnaire
Answers
Frequency
Percentage (%)
(1) Do you believe there are important differences in your way of relating with patients affected by conditions whose prognosis is uncertain? If yes, which ones?
Yes No Not answered
10 3 4
59 18 24
(2) Do you think you have any particular difficulty in relating and communicating with these patients?
Yes No Not answered
13 4 0
76 24 0
(3) Which thoughts, feelings and emotions do you think contributed to the development of these difficulties?
Answered Not answered
8 9
47 53
(4) Do you believe there are potential facilitating factors in your daily work with these patients?
Yes No Not answered
13 2 2
76 12 12
(5) Which are the frequently asked questions of these patients?
Answered Not answered
16 1
94 6
(6) What do you think would be useful to handle the relationship with these patients?
Answered Not answered
15 2
88 12
questionnaire was handed over to the single operator and later collected anonymously. The 17 members of staff who turned in the questionnaire were enrolled in the study: 5 obstetricians, 5 midwives, 4 fellow obstetricians, 2 residents and 1 student. Fifteen were females and 2 were males. Both patients’ and operators’ questionnaires were not used before. They were created by the authors specifically for the present pilot study in order to explore, in a systemic view, the reciprocal perceived relationship between women and operators. 2.3. Data analysis Patients’ data were analyzed by descriptive statistics. Data from the operators’ questionnaire were analyzed using content analysis [30]. Results are presented as frequency of answers and percentage over the total number either of subjects or of answers given for each question. 3. Results 3.1. Patients 3.1.1. Perception of efficacy of staff communication Patients’ answers relating to the perception of staff communication expressed as frequency and percentage are reported in Table 3a. Data from question 1 show that 9 women declared that they had not completely understood the admission diagnosis; either because the physicians used technical terms (4), did not give complete explanations (4), or did not know the health status of the fetus (1). The 17 women who said it was useless to receive a leaflet (question 2) stated that they preferred a verbal communication with the physician, as they considered it more personal. Among women who had not completely comprehended the fetal prognosis (16), 6 patients specified that the reason depended on the uncertainty of the situation and 5 on a scant consultation. Among women who had not completely comprehended the maternal prognosis (14), 2 said that this was due to the situation which was in constant development, and 3 that this was due to the lack of a common explanation given by the medical staff. Regarding questions 9 and 10, 4 women mainly reported that there was discrepant information on the management of the pregnancy and 2 that there was lack of continuity between different staff members. About question 11, 4 women claimed that, in order to avoid additional and pointless pain and anxiety, they would prefer to
wait for a clearer diagnosis and prognosis before receiving additional information. 3.1.2. Emotions Patients’ answers about their emotions, expressed as percentages, are reported in Table 3b. Regarding question 5, women claimed that they mostly experienced joy, apprehension, in particular connected with the uncertainty of the situation, and concern. Answers to question 6 were mostly dread, fear, astonishment and preoccupation. Some women also felt relieved and calm because someone finally understood their concern. Twenty-three subjects claimed they felt partially lonely during their pregnancy and particularly during their stay at the hospital. 3.2. Clinical operators Operators’ answers expressed as frequency and percentage are reported in Table 4. Question 1 shows that 5 operators felt that they should pay more attention, give more consideration and more frequent reassurances, 3 reported that they were asked to be emotionally
Table 5 Operators’ answers about their particular difficulties in relating and communicating with hospitalized ‘‘high-risk’’ pregnant women (question 2 of the ‘‘Operators’ Questionnaire’’). Difficulties
Frequency
% (total = 15 answers)
Relational area Being empathic Keeping the right emotional distance Creating a trust-based relationship with patients Reassuring Giving hope
6 2 1 1
40 13 7 7
1 1
7 7
Technical area Dealing with very complicated pregnancies Diagnostic and prognostic uncertainty Too little time to dedicate to the patient No certain answers to give
4 1 1 1 1
27 7 7 7 7
Specific factors area Dealing with foreign women Dealing with patients not supported by their partner Dealing with patients who had received discrepant medical information
5 1 2
33 7 13
2
13
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Table 6 Operators’ answers relating to what they thought useful to handle the relationship with hospitalized ‘‘high-risk’’ pregnant women (question 6 of the ‘‘Operators’ Questionnaire’’). Useful factors
Frequency
% (total = 26 answers)
Psychologist Staff agreement and confrontation Additional time More experience Interpreter Additional health personnel More emphatic physicians Different doctors’ work shifts
9 6 4 3 1 1 1 1
35 23 15 11 4 4 4 4
and physically closer, more empathic and to listen more carefully, 1 affirmed that he should dedicate more time and 1 that he related differently from person to person. Regarding question 2, we divided the answers into 3 different areas in order to synthesize them: the ‘‘relational area’’, the ‘‘technical area’’ and the ‘‘specific factors area’’ (Table 5). Most women described difficulties concerning the ‘‘relational area’’. Regarding question 3, operators named feelings of fear, guilt, anxiety, powerlessness and inexperience. They also spoke about emotional closeness and identification, little time to spend with patients and too much or too little professional experience. Data on question 4 showed that the facilitating factors related overall to the physician’s capacity for listening, providing support and being empathic (4 of 20 answers); to the clinical system, including diagnostic means, staff confrontation and comparison (10 of 20 answers); to the patients’ relational ability (forthcoming and able to stay in the relationship) and to psychological support (6 of 20 answers). According to 21 of 26 answers, patients asked for further explanations and clarifications, particularly regarding the diagnosis and prognosis and the admission and delivery plans; in 4 of the 26 answers, they sought staff reassurance and empathy (question 5). Answers relating to question 6 (Table 6) showed that the contribution of a psychologist is considered helpful as a mediator or facilitator of communication and as an emotional support for patients and professional workers. 4. Discussion The transition from a ‘‘normal’’ pregnancy to a ‘‘high-risk’’ situation represents a critical moment for both pregnant women and clinical operators [21]. This precise moment, when women mostly experience dread, astonishment and preoccupation, may be strongly affected by the communication of the admission diagnosis [21]. In fact, our patients complained about feelings of apprehension, anxiety, uneasiness and uncertainty connected with the diagnosed pathology and particularly with the fetal prognosis. To our knowledge, this is the first study in this context. It represents a preliminary attempt to adopt a systemic view in order to overcome the bipolar interaction between high-risk pregnant women and the entire therapeutic team, and consequently, to evidence the potential factors affecting the quality of their relationship and communication. Since human communication and relationships are ongoing dynamic processes, rather than oneway fixed sequences of events, it is implied that subjective measures are more useful than objective measures for evaluating this notion [31]. Since a quantitative method cannot measure critical elements of the interaction process or patients’ perspectives, we decided to use a measure based on operators’ and women’s perceptions. However, our study presents some methodological limits due to the use of non-validated questionnaires.
As previously reported [4], positive physician communication behaviors increase patients’ perceptions of physician competence. Accordingly, a first noteworthy element revealed by our results is women’s perception of having comprehended staff communications and established a basic trust towards the entire clinical staff along with their partners and families. However, analyzing women’s answers more carefully, we realized that a fairly good number of inpatients believed they did not completely understand the admission diagnosis and prognosis. This perception of incomplete understanding of the clinical situation may be caused not only by the uncertainty of the situation itself, but also by factors connected to relations and communication among clinical operators (e.g., ‘‘Every day there is a different operator, and each one tells you his own version of the situation’’; ‘‘...anyway, they contradict themselves and one another’’; ‘‘What’s missing is a stable interlocutor, there’s a state of confusion’’), or to the relationship between operators and patients (e.g., ‘‘They are not thorough in their explanations’’; ‘‘They didn’t explain anything to me’’). These results are in line with Schofield’s findings [32] and with Espinosa’s work [33] about doctors’ difficulties and about their suffering when breaking bad news in a cancer care context. The above-mentioned behaviors could be connected to operators’ stress and frustration in giving inauspicious or uncertain diagnoses and prognoses and to their own attempt of protecting themselves from patients’ and families’ emotional reactions. Accordingly, the necessity of being early informed about all the possible obstacles that the medical staff might identify, even when the assumed pathology is still not well defined, was strongly claimed in a request to be given accurate and consistent information about their condition and the likely outcome. Interestingly, this complaint did not seem to decrease the possibility of trusting the clinical staff, relying on them and completely agreeing with medical decisions. Furthermore, in this situation many women, particularly foreigners, described feelings of loneliness connected to the admission in the hospital ward, and to the forced absence of their partner and relatives. These feelings seem to require an additional relational and emotional presence from the prenatal care team. The possibility of implicating patients’ partners and relatives in the hospitalization would probably allow operators to be relieved of an important workload and to accompany the future mother to a more easy and untroubled homecoming, thanks to the presence of a social support network. Several studies [32,34] have reported the necessity of guidelines and clinical protocols on how to deliver bad news in cancer care. Our findings show that also in the context of high-risk pregnancies the operators could be helped in their daily work by being informed how to deal with patients’ and their own emotional strong reactions connected to uncertain conditions. The evaluation of the operators’ questionnaire showed a general difficulty relating to the overall management of the relationship with this sample of patients, together with the idea of always being called to a greater clearness and clinical reliability. Each operator thought to be called for an emotional presence, often problematic because of lack of time and working and clinical context characteristics. Most clinical workers felt that they should pay more attention to these patients, in order to give more consideration, reassure more frequently, be emotionally and physically closer, be more emphatic and to listen more carefully. Women were perceived as often asking for further explanations and clarifications, particularly regarding the diagnosis and prognosis, the admission and delivery plans, such as the neonatal outcome, the call for absolute certainties, etc. Unfortunately, these demands seemed for the great majority difficult to respond to. Secondly, the operators found it difficult to stay in the relationship that women demand mostly because of ‘‘relational difficulties’’ or ‘‘technical difficulties’’. This relational ‘‘impasse’’ seems to be generated from feelings of fear, guilt, anxiety, powerlessness and from lack of experience, such as
M.L. Pozzo et al. / European Journal of Obstetrics & Gynecology and Reproductive Biology 149 (2010) 136–142
‘‘Feelings of incapacity in changing the situation. Almost a feeling of powerlessness and guilt as doctors’’. Interestingly, more than half of the clinical workers had difficulties in recognizing (or did not recognize at all) the emotions connected with their working act. An explicative hypothesis may be not considering the importance of listening to their own emotions and their own well-being or unease as a working instrument. Thus, the presence of a psychologist is an important facilitating factor both for the clinical (prenatal care staffpatient) and for the inter-staff relationship and communication, as he/she could function as a communication mediator or facilitator and as an emotional support for patients and professional workers. Similarly, the presence of an interpreter and of additional health personnel are useful tools for handling the relationship with women, along with the possibility of dedicating more time, gaining more clinical experience, reaching an agreement and a better multidisciplinary staff interaction (physicians, nurses, psychologists, etc.), in order to create the conditions for providing an unequivocal consultancy to the patients. On the whole, our results showed that when pregnancy becomes a ‘‘high-risk’’ situation, some difficulties in the relationship between women and health operators exist in line with the general literature background [32–34]. However, for inpatients the emotional difficulties are mostly connected with the pathological situation and the contingent loneliness (being separated from partner and family), while for operators the relational and communicative difficulties specifically concern the relationship with these patients. An explicative hypothesis of this perceived gap might concentrate on the difference of intrinsic responsibility of the health professional-patient relationship. The latter trusts and relies on the former, often commissioning him or her with vital decisions. In conclusion, despite some limitations, our results may provide a useful insight for improving the communication in prenatal care, in order to produce guidelines for doctor–patient communication when ‘‘high-risk’’ pregnancies occur. 5. Limitations and future developments In order to explore, in a systemic view, the reciprocal perceived relationship between women and operators, we developed new specific questionnaires. The use of non-validated questionnaires does not allow comparison of different populations in different settings and to generalize the findings. Our aim, though, was to carry out a pilot study in order to describe the specific reality of our high-risk pregnancy department. This starting point should lead to future investigations with increased sample size. Moreover, women’s questionnaire may be compared with some validated instruments in order to investigate specific variables that seem involved (loneliness, fear, anger, etc.) and in future developments it may be validated. The use of open-ended questions embraces an additional criterion of discretion, but in this exploratory phase we intended to gain all possible information without losing important data. Now that we collected different possible answers, operators’ questionnaire may be transformed in a close-ended questionnaire and follow the above-mentioned procedure to be validated. Another potential limitation of our study is the heterogeneity of the clinical diagnosis at admission. This is a difficult point to address since many variables may influence the psychological experience in this setting, comprising maternal age, socioeconomic status, previous obstetric history, gestational age at admission, as well as other factors. Future studies should investigate and deepen our results particularly regarding women’s perception, expectations and emotions and dividing them according to the information on their clinical condition before admission.
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Contents lists available at ScienceDirect
European Journal of Obstetrics & Gynecology and Reproductive Biology journal homepage: www.elsevier.com/locate/ejogrb
Clinical relationship and psychological experience of hospitalization in ‘‘high-risk’’ pregnancy Melissa L. Pozzo a,b,1, Valentina Brusati c,2, Irene Cetin b,2,* a
Fondazione IRCCS Policlinico, Mangiagalli e Regina Elena, Milan, Italy Unit of Obstetrics and Gynecology, Department of Clinical Sciences L. Sacco, University of Milan, Via G. B. Grassi, 74, 20151 Milan, Italy c Doctorate in Sciences of Prenatal Development, Fetal Diagnosis and Therapy, University of Milan, Milan, Italy b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 15 July 2009 Received in revised form 9 November 2009 Accepted 11 December 2009
Objective: To explore, in a systemic view, the reciprocal perceived relationship between hospitalized ‘‘high-risk’’ pregnant women with uncertain fetal prognosis and the multidisciplinary prenatal care team, by the use of specifically developed questionnaires. Study design: A pilot study in a high-risk pregnancy department. We enrolled 52 pregnant hospitalized women and 17 clinical operators and we interviewed them by the use of open-ended and close-ended question questionnaires. Results: We described patients’ perception of doctors and staff communication, patients’ feelings and emotions relating to ‘‘high-risk’’ pregnancy and hospitalization, operators’ emotions, perceived facilitating factors, difficulties and resources. In a ‘‘high-risk’’ pregnancy condition, some difficulties in the relationship between hospitalized women and health operators occur. For inpatients the emotional difficulties were mostly connected to the pathologic situation and the contingent loneliness. Although the majority of women said that they understood staff communication and that they established a basic trust towards the entire clinical staff, there was a request for greater outspokenness. For clinical operators the relational and communication difficulties specifically concerned the overall management of the relationship with the patients studied. In particular, they perceived themselves to be called to a greater clearness and clinical reliability. Conclusions: Overcoming the dyadic model of the doctor–patient relationship (in a systemic view) by incorporating clinical operators’ and inpatients’ points of view, seems a useful tool to highlight critical and facilitating factors about the relationship and communication in ‘‘high-risk’’ conditions. Condensation Overcoming the dyadic vision of the doctor–patient relationship, by crossing clinical operator’s and inpatient’s points of view, seems a useful tool to highlight critical and facilitating factors about the relationship and communication in ‘‘high-risk’’ pregnancy conditions. ß 2010 Elsevier Ireland Ltd. All rights reserved.
Keywords: Clinical communication ‘‘High-risk’’ pregnancy Systemic view
1. Introduction Since the second half of the 1980s, doctor–patient communication and relationships have been discussed and analyzed by a growing number of authors, and have been observed from a variety of points of view [1–18]. Doctor–patient interaction has been described as the main determinant of the accuracy and completeness of patient data collection, diagnostic accuracy, efficacy in the encounter, compliance, the patient’s understanding of problems, and the patient’s and physician’s satisfaction. In
* Corresponding author. Tel.: +39 02 50319804; fax: +39 02 50319806. E-mail address: [email protected] (I. Cetin). 1 Psychologist, psychotherapist receiver of a scholarship from Fondazione Policlinico, Mangiagalli e Regina Elena. 2 MD- Specialist in Maternal-Fetal medicine. 0301-2115/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ejogrb.2009.12.009
other words, it has been represented as the principal medium of care [19]. During the last decade, in particular, doctor–patient interaction has been mostly studied by clinicians and professionals dealing with prenatal diagnosis, and increased attention has been paid to the difficulty of ‘‘breaking bad news’’ [20]. However, there is a paucity of investigation on doctor–patient communication in prenatal care as well as research on the psychological experience of hospitalization due to high-risk pregnancy [21]. Clinician-patient interaction is particularly difficult when medical issues are the source of fear, uncertainty and unpredictable outcomes, as often happens when dealing with problems concerning pregnancy and delivering babies. Conditions defined as high-risk pregnancies are associated with elevated neonatal mortality, morbidity and poor neuro-development in childhood. In such situations, prognosis is often expressed in terms of percentage of ‘‘neonatal survival’’ and ‘‘neonatal intact survival’’, associated with a specific condition and
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depending on gestational age [22]. The uncertainty about evolution and timing of delivery adds drama in a situation in which the subjects are profoundly oriented towards life [20]. Furthermore, researchers and clinicians are starting to reconsider the traditional expression ‘‘doctor–patient relationship’’ and to criticize the idea of a bipolar interaction between them. Women admitted to a hospital department (along with their family, friends, colleagues, spiritual guides, etc.) do not refer to one physician only, but interact with a ‘‘therapeutic team’’ consisting of various health professionals: different specialists, residents, nurses, midwives, social assistants, psychologists, etc. [23]. Nowadays, the expression ‘‘clinical relationship’’ or ‘‘health relationship’’ seems preferable and much more representative of the complexity of the context. Thereby, according to several authors [24–26], overcoming the dyadic vision of the doctor–patient relationship, and including the relational world of the patient and the entire working team, means being able to adopt an all-round viewpoint that gives strength to the observations of the individual (either patient or hospital operator), and to the relational rules and interactions between them. In other words, a systemicrelational view may be useful in this context [27–29]. For these reasons, we decided to interview ‘‘high-risk’’ pregnant women and the multidisciplinary prenatal care team in order to describe their reciprocally perceived relationship. In particular, we explored inpatients’ perception of doctors and staff communications, patients’ feelings and emotions relating to ‘‘high-risk’’ pregnancy and hospitalization, as well as operators’ emotions, perceived facilitating factors, difficulties and resources. To achieve this aim, patients’ and operators’ questionnaires were specifically created to level the gathering of information for the entire sample.
2. Materials and methods We carried out a pilot study. Women and clinical workers were enrolled at the high-risk pregnancy clinic in the Department of Obstetrics, Gynecology and Neonatology ‘‘L. Mangiagalli’’ of Milan (Italy), between December 2006 and December 2007. During this period of time the medical staff as well as the clinical strategies and protocols did not change. The study was approved by the Hospital Ethical Committee and informed consent was obtained from all patients and caregivers. 2.1. Patients Fifty-two pregnant women (41 singletons, 7 twin pregnancies and 4 triplet pregnancies) were recruited. They were admitted to the high-risk clinic between 18 and 37 weeks of gestational age, due to pregnancies complicated by conditions associated with uncertain fetal prognosis (Table 1) like preterm labor, preterm premature rupture of the membranes, intrauterine growth restriction, threatened miscarriage and cervical incompetence. The diagnosis was communicated to the patients at the time of admission by the doctor in the emergency room. Women not able to fully understand the Italian language were excluded from this study. Thirty-nine women (75%) were Italian and 13 women (25%) had different nationalities. Patients’ characteristics and neonatal outcomes are presented in Table 2. After three to five days from admission, women were asked to answer an 11-question questionnaire consisting of close-ended questions (Tables 3a and 3b). The questionnaire was structured in two areas. The first area (seven questions) studied the patient’s perception of doctors and staff communication; the second area (four questions) explored patient’s emotions relating to high-risk pregnancy and hospitalization. Questionnaires were discussed in a brief interview in order to better understand patients’ answers. Interviews were carried out
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Table 1 Diagnosis at the time of admission. Diagnosis
Number of patients
Preterm labor Preterm premature rupture of the membranes (pPROM) Intrauterine growth restriction (IUGR) Threatened miscarriage Cervical incompetence
27 3 17 2 3
individually and conducted by the same research psychologist with clinical experience (M.L.P.). 2.2. Clinical operators All clinical operators (n = 26) of the High-Risk Pregnancy Clinic (obstetricians, midwives, fellows, residents and students) were asked to complete a six open-ended question questionnaire (Tables 4–6). Three questions explored perceived difficulties in dealing with the patients and in communicating the dubious prognosis and adverse outcomes; three questions explored factors perceived as facilitating, resources and operative suggestions. The Table 2 Patients’ characteristics. Variable
Number of patients
Maternal age (22–48 years) 20–29 30–39 40–49
17 28 7
Gestational age (18–37 weeks) 18–24 25–28 29–33 34–37
6 13 25 8
Educational level Junior high school Senior high school College degree Not available
8 24 18 2
Marital status Single Married Cohabitant Divorced
3 41 6 2
Obstetrical history Primigravida Previous miscarriage Previous voluntary termination of pregnancy (<90 days post-conceptional age) Previous live born children Previous stillborn Previous termination of pregnancy >90 days post-conceptional age
28 33 3 18 2 2
Type of conception Spontaneous Assisted reproduction
42 10
Type of delivery Spontaneous Cesarean section Not available
15 33 4
Neonatal outcomesa Gestational age at delivery Baby weight IUGR Emergency caesarean section Neonatal deaths
36 (30–40) weeksb 2348.3 (875–4170) gb 11 5 4
a b
Available for 48 women. Mean (range).
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Table 3a Hospitalized pregnant women’s answers relating to the perception of staff communication, expressed as frequency and percentage. Question
Answers
Frequency
Percentage (%)
(1) Do you believe you understood the admission diagnosis?
Yes completely Yes, partially Not completely Absolutely not
43 0 9 0
83 0 17 0
(2) Do you reckon it would be useful to receive an informative leaflet that better explains the characteristics of the diagnosis you received?
Yes No
35 17
67 33
(3) Do you believe you understood the fetal prognosis?
Yes completely Yes, partially Not completely Absolutely not
36 12 3 1
69 23 6 2
(4) Do you believe you understood the maternal prognosis?
Yes completely Yes, partially Not completely Absolutely not
38 11 2 1
73 21 4 2
(9) Do you agree with the decisions the clinical staff made about your pregnancy?
Yes completely Yes, partially Not completely Absolutely not
48 3 1 0
92 6 2 0
(10) Do you think that your partner and relatives agree with the decisions the clinical staff made about your pregnancy?
Yes completely Yes, partially Not completely Absolutely not
47 4 1 0
90 8 2 0
(11) If the hypothesized pathology is still not well defined and the diagnosis and prognosis are uncertain, would you prefer to be immediately informed of all the possible risks that the medical staff might identify, or would you prefer to wait for a more clear prognosis?
Immediately informed Wait for a more clear prognosis
48 4
92 8
Table 3b Hospitalized pregnant women’ answers about their emotions relating to ‘‘high-risk’’ pregnancy and hospitalization, expressed as percentage. Question
Answers
Percentage (%)
(5) What do you feel about the actual pregnancy?
Joy Apprehension Concern Anxiety Sadness Abashment Fear Vulnerability Loneliness Satisfaction Feelings of responsibility Powerlessness Disbelief
60 9 7 6 4 3 3 3 1 1 1 1 1
(6) What did you feel when the medical staff communicated the diagnosis to you?a
Dread Fear Astonishment Preoccupation Relief Anxiety Sadness Abashment Anger Apprehension Calmness
29 17 15 14 11 5 3 2 2 1 1
(7) Do you feel lonely in this critical moment?
Yes completely Yes, partially Not completely Absolutely not
0 42 2 56
(8) Who would you like to feel closer?
No one Partner Relatives Physician Psychologist Friends
51 20 18 5 4 2
a
a
Percentage over the total number of answers.
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Table 4 Operators’ answers relating to their emotions, perceived facilitating factors and difficulties, expressed as frequency and percentage. Operators’ questionnaire
Answers
Frequency
Percentage (%)
(1) Do you believe there are important differences in your way of relating with patients affected by conditions whose prognosis is uncertain? If yes, which ones?
Yes No Not answered
10 3 4
59 18 24
(2) Do you think you have any particular difficulty in relating and communicating with these patients?
Yes No Not answered
13 4 0
76 24 0
(3) Which thoughts, feelings and emotions do you think contributed to the development of these difficulties?
Answered Not answered
8 9
47 53
(4) Do you believe there are potential facilitating factors in your daily work with these patients?
Yes No Not answered
13 2 2
76 12 12
(5) Which are the frequently asked questions of these patients?
Answered Not answered
16 1
94 6
(6) What do you think would be useful to handle the relationship with these patients?
Answered Not answered
15 2
88 12
questionnaire was handed over to the single operator and later collected anonymously. The 17 members of staff who turned in the questionnaire were enrolled in the study: 5 obstetricians, 5 midwives, 4 fellow obstetricians, 2 residents and 1 student. Fifteen were females and 2 were males. Both patients’ and operators’ questionnaires were not used before. They were created by the authors specifically for the present pilot study in order to explore, in a systemic view, the reciprocal perceived relationship between women and operators. 2.3. Data analysis Patients’ data were analyzed by descriptive statistics. Data from the operators’ questionnaire were analyzed using content analysis [30]. Results are presented as frequency of answers and percentage over the total number either of subjects or of answers given for each question. 3. Results 3.1. Patients 3.1.1. Perception of efficacy of staff communication Patients’ answers relating to the perception of staff communication expressed as frequency and percentage are reported in Table 3a. Data from question 1 show that 9 women declared that they had not completely understood the admission diagnosis; either because the physicians used technical terms (4), did not give complete explanations (4), or did not know the health status of the fetus (1). The 17 women who said it was useless to receive a leaflet (question 2) stated that they preferred a verbal communication with the physician, as they considered it more personal. Among women who had not completely comprehended the fetal prognosis (16), 6 patients specified that the reason depended on the uncertainty of the situation and 5 on a scant consultation. Among women who had not completely comprehended the maternal prognosis (14), 2 said that this was due to the situation which was in constant development, and 3 that this was due to the lack of a common explanation given by the medical staff. Regarding questions 9 and 10, 4 women mainly reported that there was discrepant information on the management of the pregnancy and 2 that there was lack of continuity between different staff members. About question 11, 4 women claimed that, in order to avoid additional and pointless pain and anxiety, they would prefer to
wait for a clearer diagnosis and prognosis before receiving additional information. 3.1.2. Emotions Patients’ answers about their emotions, expressed as percentages, are reported in Table 3b. Regarding question 5, women claimed that they mostly experienced joy, apprehension, in particular connected with the uncertainty of the situation, and concern. Answers to question 6 were mostly dread, fear, astonishment and preoccupation. Some women also felt relieved and calm because someone finally understood their concern. Twenty-three subjects claimed they felt partially lonely during their pregnancy and particularly during their stay at the hospital. 3.2. Clinical operators Operators’ answers expressed as frequency and percentage are reported in Table 4. Question 1 shows that 5 operators felt that they should pay more attention, give more consideration and more frequent reassurances, 3 reported that they were asked to be emotionally
Table 5 Operators’ answers about their particular difficulties in relating and communicating with hospitalized ‘‘high-risk’’ pregnant women (question 2 of the ‘‘Operators’ Questionnaire’’). Difficulties
Frequency
% (total = 15 answers)
Relational area Being empathic Keeping the right emotional distance Creating a trust-based relationship with patients Reassuring Giving hope
6 2 1 1
40 13 7 7
1 1
7 7
Technical area Dealing with very complicated pregnancies Diagnostic and prognostic uncertainty Too little time to dedicate to the patient No certain answers to give
4 1 1 1 1
27 7 7 7 7
Specific factors area Dealing with foreign women Dealing with patients not supported by their partner Dealing with patients who had received discrepant medical information
5 1 2
33 7 13
2
13
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Table 6 Operators’ answers relating to what they thought useful to handle the relationship with hospitalized ‘‘high-risk’’ pregnant women (question 6 of the ‘‘Operators’ Questionnaire’’). Useful factors
Frequency
% (total = 26 answers)
Psychologist Staff agreement and confrontation Additional time More experience Interpreter Additional health personnel More emphatic physicians Different doctors’ work shifts
9 6 4 3 1 1 1 1
35 23 15 11 4 4 4 4
and physically closer, more empathic and to listen more carefully, 1 affirmed that he should dedicate more time and 1 that he related differently from person to person. Regarding question 2, we divided the answers into 3 different areas in order to synthesize them: the ‘‘relational area’’, the ‘‘technical area’’ and the ‘‘specific factors area’’ (Table 5). Most women described difficulties concerning the ‘‘relational area’’. Regarding question 3, operators named feelings of fear, guilt, anxiety, powerlessness and inexperience. They also spoke about emotional closeness and identification, little time to spend with patients and too much or too little professional experience. Data on question 4 showed that the facilitating factors related overall to the physician’s capacity for listening, providing support and being empathic (4 of 20 answers); to the clinical system, including diagnostic means, staff confrontation and comparison (10 of 20 answers); to the patients’ relational ability (forthcoming and able to stay in the relationship) and to psychological support (6 of 20 answers). According to 21 of 26 answers, patients asked for further explanations and clarifications, particularly regarding the diagnosis and prognosis and the admission and delivery plans; in 4 of the 26 answers, they sought staff reassurance and empathy (question 5). Answers relating to question 6 (Table 6) showed that the contribution of a psychologist is considered helpful as a mediator or facilitator of communication and as an emotional support for patients and professional workers. 4. Discussion The transition from a ‘‘normal’’ pregnancy to a ‘‘high-risk’’ situation represents a critical moment for both pregnant women and clinical operators [21]. This precise moment, when women mostly experience dread, astonishment and preoccupation, may be strongly affected by the communication of the admission diagnosis [21]. In fact, our patients complained about feelings of apprehension, anxiety, uneasiness and uncertainty connected with the diagnosed pathology and particularly with the fetal prognosis. To our knowledge, this is the first study in this context. It represents a preliminary attempt to adopt a systemic view in order to overcome the bipolar interaction between high-risk pregnant women and the entire therapeutic team, and consequently, to evidence the potential factors affecting the quality of their relationship and communication. Since human communication and relationships are ongoing dynamic processes, rather than oneway fixed sequences of events, it is implied that subjective measures are more useful than objective measures for evaluating this notion [31]. Since a quantitative method cannot measure critical elements of the interaction process or patients’ perspectives, we decided to use a measure based on operators’ and women’s perceptions. However, our study presents some methodological limits due to the use of non-validated questionnaires.
As previously reported [4], positive physician communication behaviors increase patients’ perceptions of physician competence. Accordingly, a first noteworthy element revealed by our results is women’s perception of having comprehended staff communications and established a basic trust towards the entire clinical staff along with their partners and families. However, analyzing women’s answers more carefully, we realized that a fairly good number of inpatients believed they did not completely understand the admission diagnosis and prognosis. This perception of incomplete understanding of the clinical situation may be caused not only by the uncertainty of the situation itself, but also by factors connected to relations and communication among clinical operators (e.g., ‘‘Every day there is a different operator, and each one tells you his own version of the situation’’; ‘‘...anyway, they contradict themselves and one another’’; ‘‘What’s missing is a stable interlocutor, there’s a state of confusion’’), or to the relationship between operators and patients (e.g., ‘‘They are not thorough in their explanations’’; ‘‘They didn’t explain anything to me’’). These results are in line with Schofield’s findings [32] and with Espinosa’s work [33] about doctors’ difficulties and about their suffering when breaking bad news in a cancer care context. The above-mentioned behaviors could be connected to operators’ stress and frustration in giving inauspicious or uncertain diagnoses and prognoses and to their own attempt of protecting themselves from patients’ and families’ emotional reactions. Accordingly, the necessity of being early informed about all the possible obstacles that the medical staff might identify, even when the assumed pathology is still not well defined, was strongly claimed in a request to be given accurate and consistent information about their condition and the likely outcome. Interestingly, this complaint did not seem to decrease the possibility of trusting the clinical staff, relying on them and completely agreeing with medical decisions. Furthermore, in this situation many women, particularly foreigners, described feelings of loneliness connected to the admission in the hospital ward, and to the forced absence of their partner and relatives. These feelings seem to require an additional relational and emotional presence from the prenatal care team. The possibility of implicating patients’ partners and relatives in the hospitalization would probably allow operators to be relieved of an important workload and to accompany the future mother to a more easy and untroubled homecoming, thanks to the presence of a social support network. Several studies [32,34] have reported the necessity of guidelines and clinical protocols on how to deliver bad news in cancer care. Our findings show that also in the context of high-risk pregnancies the operators could be helped in their daily work by being informed how to deal with patients’ and their own emotional strong reactions connected to uncertain conditions. The evaluation of the operators’ questionnaire showed a general difficulty relating to the overall management of the relationship with this sample of patients, together with the idea of always being called to a greater clearness and clinical reliability. Each operator thought to be called for an emotional presence, often problematic because of lack of time and working and clinical context characteristics. Most clinical workers felt that they should pay more attention to these patients, in order to give more consideration, reassure more frequently, be emotionally and physically closer, be more emphatic and to listen more carefully. Women were perceived as often asking for further explanations and clarifications, particularly regarding the diagnosis and prognosis, the admission and delivery plans, such as the neonatal outcome, the call for absolute certainties, etc. Unfortunately, these demands seemed for the great majority difficult to respond to. Secondly, the operators found it difficult to stay in the relationship that women demand mostly because of ‘‘relational difficulties’’ or ‘‘technical difficulties’’. This relational ‘‘impasse’’ seems to be generated from feelings of fear, guilt, anxiety, powerlessness and from lack of experience, such as
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‘‘Feelings of incapacity in changing the situation. Almost a feeling of powerlessness and guilt as doctors’’. Interestingly, more than half of the clinical workers had difficulties in recognizing (or did not recognize at all) the emotions connected with their working act. An explicative hypothesis may be not considering the importance of listening to their own emotions and their own well-being or unease as a working instrument. Thus, the presence of a psychologist is an important facilitating factor both for the clinical (prenatal care staffpatient) and for the inter-staff relationship and communication, as he/she could function as a communication mediator or facilitator and as an emotional support for patients and professional workers. Similarly, the presence of an interpreter and of additional health personnel are useful tools for handling the relationship with women, along with the possibility of dedicating more time, gaining more clinical experience, reaching an agreement and a better multidisciplinary staff interaction (physicians, nurses, psychologists, etc.), in order to create the conditions for providing an unequivocal consultancy to the patients. On the whole, our results showed that when pregnancy becomes a ‘‘high-risk’’ situation, some difficulties in the relationship between women and health operators exist in line with the general literature background [32–34]. However, for inpatients the emotional difficulties are mostly connected with the pathological situation and the contingent loneliness (being separated from partner and family), while for operators the relational and communicative difficulties specifically concern the relationship with these patients. An explicative hypothesis of this perceived gap might concentrate on the difference of intrinsic responsibility of the health professional-patient relationship. The latter trusts and relies on the former, often commissioning him or her with vital decisions. In conclusion, despite some limitations, our results may provide a useful insight for improving the communication in prenatal care, in order to produce guidelines for doctor–patient communication when ‘‘high-risk’’ pregnancies occur. 5. Limitations and future developments In order to explore, in a systemic view, the reciprocal perceived relationship between women and operators, we developed new specific questionnaires. The use of non-validated questionnaires does not allow comparison of different populations in different settings and to generalize the findings. Our aim, though, was to carry out a pilot study in order to describe the specific reality of our high-risk pregnancy department. This starting point should lead to future investigations with increased sample size. Moreover, women’s questionnaire may be compared with some validated instruments in order to investigate specific variables that seem involved (loneliness, fear, anger, etc.) and in future developments it may be validated. The use of open-ended questions embraces an additional criterion of discretion, but in this exploratory phase we intended to gain all possible information without losing important data. Now that we collected different possible answers, operators’ questionnaire may be transformed in a close-ended questionnaire and follow the above-mentioned procedure to be validated. Another potential limitation of our study is the heterogeneity of the clinical diagnosis at admission. This is a difficult point to address since many variables may influence the psychological experience in this setting, comprising maternal age, socioeconomic status, previous obstetric history, gestational age at admission, as well as other factors. Future studies should investigate and deepen our results particularly regarding women’s perception, expectations and emotions and dividing them according to the information on their clinical condition before admission.
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