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Strategies to communicate pregnancy complications: a systematic review and practical points for healthcare professionals
Abstract
Purpose/methods:
This systematic review aims to provide an overview of strategies available for healthcare professionals (HCPs) to effectively communicate unexpected news in pregnancy, specifically for the most common pregnancy complications. Three medical databases and grey literature were searched until March 2023 using subject headings and keywords. Snowball techniques were also used. The articles were reviewed at each stage of screening independently by two separate authors. Qualitative, quantitative and mixed methods studies were included.
Recent findings:
Forty-three studies were included and grouped according to the gestational age of the pregnancy complication - miscarriage, increased risk screening, foetal conditions, stillbirth. The main key points for communication were outlined at each specific complication and eventually the six common themes that emerged from all the categories were included in the acronym PRICES (Preparation - Referral - Individualized care - Clarity - Empowerment - Sensitivity).
Summary:
Given the negative impact of failed communications both in pregnancy outcomes and patients' experience, we advocate that communication training for HCP providing pregnancy care should be mandatory, and skills should be updated at regular intervals. Tools like our acronym PRICES can be used during teaching HCPs how to communicate more effectively.
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Background
Communication and interaction with healthcare workers at the time of stillbirth remain in parents’ long-term memories and impact on emotional and psychological well-being. Cultural attitudes and norms influence how stillbirth is acknowledged and discussed in society. There is limited evidence on how women from sub-Saharan Africa became aware of the death of their babies. This research explored how women perceived the approach adopted by healthcare workers when the news of their stillbirth was disclosed to them.
Methods
Grounded theory study. Women (n = 33) who had birthed a stillborn baby in the preceding 12 months were purposively sampled and participated in in-depth interviews (9 in Zambia, 16 in Tanzania and 8 in Malawi). Informed consent was gained from all participants. Data were analysed via a coding process using constant comparative analysis.
Findings
Women sacrificed individualized and personal grieving strategies to conform and behave according to what was expected within their community. An overarching theme of cultural conformity overrides personal grief incorporated four sub-themes: perceiving something was wrong, the unexpected outcome, experience contrasting emotions, bonding with the baby.
Discussion and conclusions
Most participants embarked on a negative ‘emotion work’ to adapt and suppress emotions and grief due to cultural expectations. Inability to voice the trauma of losing a baby may lead to perinatal mental health issues and needs addressing. Maternity healthcare workers should encourage women to express their feelings and grief. Appropriate training in perinatal bereavement care including good communication, appropriate attitudes and provision of meaningful information to grieving women is recommended.
(1) Background: The death of a baby in utero is a very sad event for both the affected parents and the caring doctors. By this study, we aimed to assess the tools, which may help obstetricians to overcome this challenge in their profession. (2) Methods: We conducted a cross-sectional online survey in 1526 obstetricians registered with the Austrian Society of Obstetrics and Gynecology between September and October 2020. (3) Results: With a response rate of 24.2% (n = 439), our study shows that diagnosing fetal death was associated with a moderate to high degree of stress, regardless of position (p = 0.949), age (p = 0.110), gender (p = 0.155), and experience (p = 0.150) of physicians. Coping strategies for delivering the news of intrauterine death to affected parents were relying on clinical knowledge and high levels of self-confidence (55.0%; 203/369), support from colleagues (53.9%; 199/369), and debriefing (52.8%; 195/369). In general, facilitators for breaking bad news were more commonly cultivated by female obstetricians [OR 1.267 (95% CI 1.149-1.396); p < 0.001], residents [χ 2 (3;369) = 9.937; p = 0.019], and obstetricians of younger age [41 (34-50) years vs. 45 (36-55) years; p = 0.018]. External facilitators were most frequently mentioned, including professional support, training, professional guidance, time, parents' leaflets, follow-up consultations, a supporting consultation atmosphere, and preparation before delivering the bad news. Internal facilitators included knowledge, empathy, seeking silence, reflection, privacy, and relief of guilt. (4) Conclusions: Communicating the diagnosis of fetal death evokes moderate to high levels of stress among obstetricians. Resources from both the professional and private environment are required to deal with this professional challenge on a personal level.
Aim
To explore the lived experience of delivering or receiving news about an unborn or newborn child having a condition associated with a learning disability in order to inform the development of a training intervention for healthcare professionals. We refer to this news as different news.
Background
How healthcare professionals deliver different news to parents affects the way they adjust to the situation, the wellbeing of their child and their ongoing engagement with services. This is the first study that examined the lived experience of delivering and receiving different news, in order to inform the development of training for healthcare professionals using the Theoretical Domains Framework version 2.
Method
We conducted qualitative interviews with a purposive sample of 9 different parents with the lived experience of receiving different news and 12 healthcare professionals who delivered different news. It was through these descriptions of the lived experience that barriers and facilitators to effectively delivering different news were identified to inform the training programme. Data analysis was guided by Theoretical Domains Framework version 2 to identify these barriers and facilitators as well as the content of a training intervention.
Findings
Receiving different news had a significant impact on parents’ emotional and mental wellbeing. They remembered how professionals described their child, the quality of care and emotional support they received. The process had a significant impact on the parent–child relationship and the relationship between the family and healthcare professionals.
Delivering different news was challenging for some healthcare professionals due to lack of training. Future training informed by parents’ experiences should equip professionals to demonstrate empathy, compassion, provide a balanced description of conditions and make referrals for further care and support. This can minimise the negative psychological impact of the news, maximise psychological wellbeing of families and reduce the burden on primary care services.
Background
For most parents, getting pregnant means having a child. Generally, the couple outlines plans and has expectations regarding the baby. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. Validating the grief of these losses has been a challenge to Brazilian society, which is evident considering the childbirth care offered to bereaved families in maternity wards. Positively assessed care that brings physical and emotional memories about the baby has a positive impact on the bereavement process that family undergoes. Therefore, this study aims to assess the effects supportive guidelines have on mental health. They were designed to assist grieving parents and their families while undergoing perinatal loss in public maternities in Ribeirão Preto, São Paulo state, Brazil.
Method
A mixed-methods (qualitative/quantitative), quasi-experimental (before/after) study. The intervention is the implementation of bereavement supportive guidelines for women who experienced a stillbirth or a neonatal death. A total of forty women will be included. Twenty participants will be assessed before and twenty will be assessed after the implementation of the guidelines. A semi-structured questionnaire and three scales will be used to assess the effects of the guidelines. Health care professionals and managers of all childbirth facilities will be invited to participate in focus group. Data will be analyzed using statistical tests, as well as thematic analysis approach.
Discussion
The Perinatal Bereavement guidelines are a local adaptation of the Canadian and British corresponding guidelines. These guidelines have been developed based on the families’ needs of baby memories during the bereavement process and include the following aspects: (1) Organization of care into periods, considering their respective needs along the process; (2) Creation of the Bereavement Professional figure in maternity wards; (3) Adequacy of the institutional environment; (4) Communication of the guidance; (5) Creation of baby memories. We expect that the current project generates additional evidence for improving the mental health of women and families that experience a perinatal loss.
Trial registration RBR-3cpthr
Plain English summary
For many couples, getting pregnant does not only mean carrying a baby, but also having a child. Most of the time, the couple has already made many plans and has expectations towards the child. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family.
In Brazilian culture, validating this traumatic grief is very difficult, especially when it happens too soon. The barriers can be noticed not only by the way society deals with the parents’ grief, but also when we see the care the grieving families receive from the health care establishment.
Creating physical and emotional memories might bring the parents satisfaction regarding the care they receive when a baby dies. These memories can be built when there is good communication throughout the care received; shared decisions; the chance to see and hold the baby, as well as collect memories; privacy and continuous care during the whole process, including when there is a new pregnancy, childbirth and postnatal period. With this in mind, among the most important factors are the training of health staff and other professionals, the preparation of the maternity ward to support bereaved families and the continuous support to the professionals involved in the bereavement.
This article proposes guidelines to support the families who are experiencing stillbirth and neonatal death. It may be followed by childbirth professionals (nurses, midwives, obstetricians and employees of a maternity ward), managers, researchers, policymakers or those interested in developing specific protocols for their maternity wards.
Objectives
Identify and summarize the available literature on the acceleration in the use of telemedicine in the midst of the COVID-19 pandemic, with an aim to provide justification and guidance for its implementation to overcome the limitations associated with the pandemic worldwide.
Methods
We conducted a scoping review through different search strategies in MEDLINE and Google Scholar to identify the available literature reporting data on implementation and usefulness of various modalities of telemedicine during the current pandemic. We summarized the included studies according to field and mode of implementation in a narrative way.
Results
We included 45 studies that fulfilled selection criteria. About 38% of the studies were conducted in the United States of America (USA), followed by 15.5% in India and 15.5% in China. Most studies (73%) were cross-sectional studies based on historical records. All publications were written in English with the exception of 1 studied published in Spanish. The majority of reports focused on use of telemedicine for outpatient care, followed by in-hospital care.
Conclusion
The COVID-19 pandemic has promoted the use of telemedicine, a tool that has transformed the provision of medical services. Several modes of implementation are useful to overcome difficulties for patient care during the pandemic. Its benefits are specific to different fields of medical practice. Such benefits, along with the guidance and reported experiences should invite health systems to work for an effective and comprehensive implementation of telemedicine in various fields.
Introduction
Ultrasound is used to diagnose pregnancy complications such as miscarriage and fetal health conditions. Within the UK, findings identified during ultrasound examination are delivered by sonographers as standard. However, little is known about the experiences of sonographers when delivering unexpected news (DUN), the impact this has on them, or their preferences for training on news delivery.
Methods
Qualitative interviews were completed with fourteen sonographers and were analysed using an inductive thematic approach. Key themes were identified.
Results
Participants said that obstetric ultrasound often involves ‘managing’ the patient encounter, including: navigating (unrealistic) patient expectations; handling their own responses to unexpected findings; and managing interaction by moderating emotional expression and communication practices to deliver patient-centred and empathic care. Persistent uncertainty of outcomes, prognosis and patient reactions, alongside high workloads, and frequent siloed working, makes DUN challenging for sonographers. DUN was experienced as emotionally burdensome, and sonographers employed personal coping strategies to reduce stress/burnout. However, the greatest mitigation for stress/burnout was support from peers, though accessing this was challenging. Peers were also described as key sources of learning, especially through observation.
Conclusion
Challenges associated with DUN are an enduring experience for sonographers. Facilitating regular ongoing support and training would enable sonographers to cope with negative aspect of the role, including the emotional burden of DUN.
Implications for practice
Long patient lists are prioritised to deal with high demand for services. However, sonographer wellbeing needs to be a key priority to avoid stress and burnout. This means facilitating protected time to access support from colleagues, multidisciplinary working where possible, and regular access to training to support DUN. Training focusing on communication practices, alongside dealing with emotional burdens of the role would be beneficial.
Background
Studies indicate there is a need to improve the delivery of unexpected news via obstetric ultrasound, but there have been few advances in this area. One factor preventing improvement has been a lack of consensus regarding the appropriate phrases and behaviours which sonographers and ultrasound practitioners should use in these situations.
Aims
To develop consensus guidelines for unexpected news delivery in Early Pregnancy Unit and Fetal Anomaly Screening Programme NHS settings.
Methods
A workshop was conducted to identify priorities and reach consensus on areas of contention. Contributors included interdisciplinary healthcare professionals, policy experts, representatives from third-sector organisations, lay experts and academic researchers ( n = 28). Written and verbal feedback was used to draft initial guidance which was then circulated amongst the wider writing group ( n = 39). Revisions were undertaken until consensus was reached.
Results
Consensus guidelines were developed outlining the behaviours and phrases which should be used during scans where unexpected findings are identified. Specific recommendations included that: honest and clear communication should be prioritised, even with uncertain findings; technical terms should be used, but these should be written down together with their lay interpretations; unless expectant parents use other terminology (e.g. ‘foetus’), the term ‘baby’ should be used as a default, even in early pregnancy; at the initial news disclosure, communication should focus on information provision. Expectant parents should not be asked to make decisions during the scan.
Conclusions
These recommendations can be used to develop and improve news delivery interventions in obstetric ultrasound settings. The full guidelines can be accessed online as supplemental material and at https://doi.org/10.5518/100/24 .
Background: Breaking bad news is a frequent task in high-risk obstetrics clinics. Few studies have examined the role of training in improving such a difficult medical task.
Aim: To evaluate the influence of a training program on the participants' perceptions of bad news communication at a high-risk obstetrics center.
Design: This prospective study was conducted at the Department of Obstetrics/Gynecology, Hospital das Clinicas, from March 2016 to May 2017.
Setting/Participants: Maternal-fetal health specialists were invited to complete an institutional questionnaire based on the SPIKES protocol for communicating bad news before and after training. The training consisted of theoretical lectures and small group practice using role play. The questionnaire responses were compared using nonparametric tests to evaluate the differences in physicians' perceptions at the two timepoints. The questionnaire items were evaluated individually and in groups following the communication steps of the SPIKES protocol.
Results: In total, 110 physicians were invited to participate. Ninety completed the pretraining questionnaire and 40 answered the post-training questionnaire. After training, there were significant improvements in knowing how to prepare the environment before delivering bad news (p = 0.010), feeling able to transmit bad news (p < 0.001), and to discuss the prognosis (p = 0.026), feeling capable of discussing ending the pregnancy (p = 0.003), and end-of-life issues (p = 0.007) and feeling confident about answering difficult questions (p = 0.004). The comparison of the grouped responses following the steps of the SPIKES protocol showed significant differences for “knowledge” (p < 0.001), “emotions,” (p = 0.004) and “strategy and summary” (p = 0.002).
Conclusion: The implementation of institutional training in breaking bad news changed the perception of the physicians in the communication setting.
Expectant parents report negative experiences of receiving unexpected news via ultrasound. There is a need to improve communication in this setting, but a lack of understanding on how to achieve this. This systematic review aimed to synthesise findings from qualitative studies exploring experiences of expectant parents or healthcare professionals when a fetal abnormality or unexpected finding was identified via ultrasound. MEDLINE, EMBASE, CINAHL and PsycINFO were searched using three blocks of terms (fetal abnormalities; ultrasound; experiences). Qualitative studies exploring the disclosure of pregnancy complications during ultrasound examinations were included and analysed using meta‐ethnographic synthesis. The review was conducted according to PRISMA and eMERGe guidelines. The review identified 28 studies. News delivered via ultrasound can be viewed as a journey involving five phases (expectations of ultrasound scans; discovery; shock; decisions and planning; adaptation). How well this is navigated depends upon the extent to which information needs and support needs are met. Ultrasound is a uniquely challenging situation to communicate difficult news as there is the potential for news to be communicated immediately. Care quality could be improved by the provision of written information and the use of correct terminology to describe abnormalities.
Aim:
To determine and describe the experiences of pregnant women who receive a diagnosis of chromosomopathy and/or foetal malformation during a prenatal check-up and who decide to legally terminate the pregnancy.
Background:
When a pregnancy is terminated, the woman must cope with frustrated motherhood. The psychological consequences of this will largely depend on the care and support provided by health professionals. When a congenital anomaly is diagnosed, a patient- centered communication helps understanding, influences adaptation to the new situation and ensures the person concerned has sufficient (autonomy or independence or ability) to make appropriate decisions.
Methods:
A qualitative study, based on a phenomenological approach, was carried out through non-participant observation and semi-structured interviews with 27 obstetric patients. NVivo 11 software was used and content analysis was performed. The manuscript was developed using the COREQ guidelines to inform qualitative studies.
Results:
The clinical relationship may be affected by communication problems such as patients' perceptions of scarce emotional involvement by obstetricians, by poor psychosocial support during the termination of the pregnancy and by insufficient follow-up after discharge.
Conclusion:
Nurses are in a privileged position to promote the empowerment of affected women. It is necessary to improve aspects related to the privacy of patients and the awareness and training of the interdisciplinary team in interpersonal communication. Post-loss follow-up is recommended to assess individual needs, thus facilitating an optimal approach to ease the grieving process.
Background
Previous studies suggest there is a need to improve the delivery of bad and challenging news in obstetric ultrasound settings. However, no research has explored the experiences of trainee sonographers when learning how to deliver challenging news. Understanding this could identify gaps in current provision and inform future training interventions.
Aims
To explore the experiences of trainee sonographers when learning how to deliver challenging news.
Methods
Semi-structured interviews were conducted with trainee sonographers ( n = 7) from four training centres to explore their experiences and preferences for news delivery training.
Results
Learning how to deliver difficult news was a journey where trainees developed their confidence over time. Most learning occurred in clinical settings, but classroom teaching complemented this. Trainees appreciated the opportunity to observe clinical practice and to hear from patient representatives. However, quality of teaching varied between centres and trainees reported uncertainty regarding the specific language and behaviours they should use. They described building their own personal protocol for news delivery through the course of their training.
Discussion
An ultrasound-specific news delivery protocol which details the words and behaviours sonographers can employ could help reduce uncertainty in trainees. Trainees may also benefit from receiving structured feedback on their news delivery performance.
Objective: In high-income countries, many cases of cleft lip are now identified at the 18-21 week pregnancy scan. The manner in which a diagnosis is communicated is vital for long-term parental wellbeing, yet previous studies have been indicative of parental dissatisfaction. The aims of the present study were to examine the experiences of parents who received an antenatal diagnosis of cleft lip in their unborn child, and to offer pragmatic suggestions for improving the diagnostic experience in practice.
Design: An online, mixed-methods survey was designed and distributed by the Cleft Lip and Palate Association. Data from 574 eligible parents were analysed using descriptive statistics and inductive content analysis.
Results: Although survey responses indicated positive diagnostic experiences overall, respondents perceived a lack of sensitivity among sonographers, long waiting times between referrals, and a lack of appropriate and reliable information. Respondents also reported a number of misconceptions about cleft lip and/or palate and its prognosis, as well as a variety of initial concerns about their own ability to cope with the anticipated challenges.
Conclusion: Findings emphasise the importance of providing accurate and individualised information to prospective parents, in a sensitive manner, so they can adjust to their child’s diagnosis and prepare for the birth appropriately. Given that antenatal screening for cleft lip is becoming more fully integrated into routine practice, more training for healthcare professionals, improved access to reliable information in a variety of formats, and stronger links between local hospitals and specialist cleft services may be needed.
Keywords: diagnosis; cleft lip; maternal health; ultrasound; sonography; pregnancy
Background: Sonographers report high levels of burnout. For those working in obstetric ultrasound, one frequently cited stressor is the delivery of bad or difficult news. Training in news delivery may reduce sonographer stress levels, but no studies have investigated sonographer experiences of this training.
Aims: To investigate sonographer experiences of difficult news delivery training and preferences for training techniques, and to assess whether news delivery training is associated with lower burnout and higher wellbeing.
Methods: A cross-sectional survey measured occupational characteristics, news delivery training experiences and preferences, burnout (on two dimensions of exhaustion and disengagement) and general mental wellbeing.
Results: Ninety sonographers (85 female; mean age = 47) responded. The majority of participants thought training in difficult news delivery had improved their practice. Preferred training techniques were observation of clinical practice and receiving service-user input. Eighty per cent of participants were experiencing exhaustion, 43.3% were experiencing disengagement and 88.9% could be classed as having a minor psychiatric disorder. Having received difficult news delivery training was associated with lower levels of disengagement, even when other variables were controlled for.
Discussion: News delivery training is perceived to be effective by sonographers and may help to reduce sonographer burnout levels.
Purpose
The aim of our research was to gain knowledge about patients’ opinions, experiences, and preferences with regard to the way the news is being delivered to them.
Materials and methods
Detailed research was carried out on a group of 314 patients using the CAWI (Computer-Assisted Web Interview) technique. Adult responders who had earlier received bad news were questioned about their opinion about the way the doctor acted while delivering bad news and how he did it.
Results
Patients, who define the following aspects of their visit as negative/lacking: 1) doctor’s behavior in the moment of delivering bad news, 2) amount of time devoted to the visit, 3) lack of doctor’s attention, 4) usage of medical terminology, 5) doctor’s honesty, 6) emotional and cognitive support from the doctor, more often tend to change the doctor in charge of their therapy or decide to cease the medical treatment.
Conclusion
Doctors’ behavior and the way they deliver news to patients are key elements that strongly influence patients’ future therapy. It makes an impact on patient’s decision whether to continue or cease the treatment. In the first case, it also leads the patient to choose to continue the treatment under the guidance of the same specialist or to find another one. The data that we acquired and that we will discuss below will form the basis for editing a communication protocol concerning delivering bad news. It is necessary to create such a protocol in order to improve the quality of communication with patients, especially as regards delivering bad news to them.
Objective
The objective of the study was to explore how women experience care within an early pregnancy assessment unit (EPAU) and how they are helped to understand, reconcile and make sense of their loss and make informed decisions about how their care will be managed following a first trimester miscarriage.
Design
This was a single centre, prospective qualitative study. An interpretive phenomenological analysis approach was used to interpret the participants’ meanings of their experiences. It is an ideographic approach that focuses in depth on a small set of cases to explore how individuals make sense of a similar experience.
Setting
An EPAU in a large teaching hospital in the Midlands that provides care to women in their early pregnancy, including those experiencing pregnancy loss.
Participants
A purposive sample of 10 women were recruited to this study. All of the women were either miscarrying at the time of this study or had miscarried within the previous few weeks.
Results
Six superordinate themes in relation to women’s experiences of miscarriage were identified: (1) the waiting game, (2) searching for information, (3) management of miscarriage: no real choice, (4) the EPAU environment, (5) communication: some room for improvement and (6) moving on.
Conclusions
This study found that improvements are required to ensure women and their partners receive a streamlined, informative, supportive and continuous package of care from the point they first see their general practitioner or midwife for support to being discharged from the EPAU. The provision of individualised care, respect for women’s opinions and appropriate clinical information is imperative to those experiencing miscarriage to help them gain a degree of agency within an unfamiliar situation and one in which they feel is out of their control.
Background
To consider the thoughts and actions of healthcare personnel in situations when an adverse prenatal diagnosis must be communicated, including appropriate strategies and skills to respond to information needs and to manage the emotional responses of patients. Methods
Descriptive qualitative study using non-participant observation and semi-structured interviews to analyse the discourses of physicians, midwives, nurses and nursing assistants who provide healthcare to obstetric patients. ResultsThere may be barriers to effective communication between healthcare personnel and patients, depending on the characteristics of the persons involved, the organisation of healthcare, biotechnological progress and cultural factors. Conclusions
The human quality of healthcare has deteriorated due to excessive workloads and to the growing role played by technology. In order to improve communication, more attention should be paid to human and spiritual dimensions, prioritising empathy, authenticity and non-judgmental listening. An appropriate model of clinical relationship should be based on shared decision making, clarifying the functions of the multidisciplinary team to alleviate a mother’s suffering when a pregnancy is interrupted. To do so, protocols should be implemented to ensure the provision of comprehensive care, not only addressing biological issues but also providing psychosocial attention. Finally, training should be provided to healthcare staff to enhance their social skills and cultural competence.This study identifies potential improvements in the interventions made by healthcare personnel and in the organisation of the institution, concerning the attention provided to pregnant women when an adverse prenatal diagnosis must be communicated.
Objective:
Perinatal loss (stillbirth or early infant death) is often a sudden, unexpected event for families. We evaluated who communicates the loss to the parents and who is there for support at the delivery or death.
Study design:
We conducted a mail survey of 900 bereaved and 500 live-birth mothers to assess emotional, physical and reproductive health outcomes.
Results:
We had a 44% response rate at 9 months after birth or loss from 377 bereaved mothers and 232 with surviving infants. Bereaved women were less likely to have hospital staff or family members present at delivery. African-American (versus Caucasian) mothers were half as likely to have first heard about their stillbirth from a physician or midwife.
Conclusion:
This is the first large study documenting who communicates perinatal death to families and who is present for support. Hospitals should be aware that many bereaved families may lack support at critical times.
Objective Resident doctors usually face the task to communicate bad news in perinatology without any formal training. The impact on parents can be disastrous. The objective of this paper is to analyze the perception of residents regarding a training program in communicating bad news in perinatology based on video reviews and setting, perception, invitation, knowledge, emotion, and summary (SPIKES) strategy.
Methods We performed the analysis of complementary data collected from participants in a randomized controlled intervention study to evaluate the efficacy of a training program on improving residents' skills to communicate bad news. Data were collected using a Likert scale. Through a thematic content analysis we tried to to apprehend the meanings, feelings and experiences expressed by resident doctors in their comments as a response to an open-ended question. Half of the group received training, consisting of discussions of video reviews of participants' simulated encounters communicating a perinatal loss to a “mother” based on the SPIKES strategy. We also offered training sessions to the control group after they completed participation. Twenty-eight residents who were randomized to intervention and 16 from the control group received training. Twenty written comments were analyzed.
Results The majority of the residents evaluated training highly as an education activity to help increase knowledge, ability and understanding about breaking bad news in perinatology. Three big categories emerged from residents' comments: SPIKES training effects; bad news communication in medical training; and doctors' feelings and relationship with patients.
Conclusions Residents took SPIKES training as a guide to systematize the communication of bad news and to amplify perceptions of the emotional needs of the patients. They suggested the insertion of a similar training in their residency programs curricula.
The prevalence of medical problems in pregnancy is increasing because of a complex interplay between demographic and lifestyle factors, and developments in modern medicine. Maternal mortality and morbidity resulting from treatable medical conditions, such as venous thromboembolism, epilepsy and autoimmune disease, have not decreased in recent years. This is despite a marked decrease in overall maternal mortality. It is vital that all physicians acquire a basic knowledge and understanding of medical problems in pregnancy. This includes prepregnancy measures such as counselling and optimisation of medical therapy, as well as multidisciplinary management throughout pregnancy and the postpartum period. Prompt recognition and treatment of acute and chronic illness is of clear benefit, and most drugs and many radiological investigations may be used in pregnancy.
Background:
Advances in genetic technologies and ultrasound screening techniques have increased the ability to predict and diagnose congenital anomalies during pregnancy. As a result more prospective parents than ever before will receive a prenatal diagnosis of a fetal abnormality. Little is known about how Australian women and men experience receiving a prenatal diagnosis and how they make their decision about whether or not to continue the pregnancy.
Aims:
This qualitative study aims to describe parental experiences and examine how best to provide support after a prenatal diagnosis.
Results:
Individual in-depth interviews were conducted with 102 women and men approximately six weeks post-diagnosis of fetal abnormality. Data were elicited using a narrative, chronological approach and women (n = 75) and a sample of male partners (n = 27) were separately interviewed. Thematic analysis, involving a rigorous process of qualitative coding, enabled iterative development and validation of emergent themes. Participants identified that the shock of the diagnosis can be lessened when good care is delivered, by provision of: clear, accurate and respectful communication; empathic, non-judgemental, professional support; timely access to further testing and appointments; seamless interactions with services and administration; appropriate choices about invasive testing; acknowledgment of the enormity and unexpected nature of the diagnosis, and of the subsequent decision-making challenges; and discussion of the myriad feelings likely to emerge throughout the process.
Conclusions:
This study has demonstrated the importance of providing timely access to accurate information and supportive, non-judgemental care for women and their partners following prenatal diagnosis of a fetal abnormality.
Monochronioric (MC) twin pregnancies are considered as high-risk pregnancies with potential complications requiring in-utero interventions. We aimed to assess prenatal attachment, anxiety, post-traumatic stress disorder (PTSD) and depressive symptoms in MC pregnancies complicated with Twin-To-Twin-transfusion syndrome (TTTS) in comparison to uncomplicated monochorionic (UMC) and dichorionic pregnancies (DC). Auto-questionnaires were filled out at diagnosis of TTTS and at successive milestones. Prenatal attachment, PTSD, anxiety and perinatal depression were evaluated respectively by the Prenatal Attachment Inventory (PAI) completed for each twin, the Post-traumatic Checklist Scale (PCLS), the State-Trait Anxiety Inventory (STAI) and the Edinburgh Perinatal Depression Scale (EPDS). There was no significant difference in the PAI scores between the two twins. In the DC and UMC groups, PAI scores increased throughout pregnancy, whilst it didn't for TTTS group. TTTS and DC had a similar prenatal attachment while MC mothers expressed a significantly higher attachment to their fetuses and expressed it earlier. At the announcement of TTTS, 72% of the patients present a score over the threshold at the EPDS Scale, with a higher score for TTTS than for DC (p = 0.005), and UMC (p = 0.007) at the same GA. 30% of mothers in TTTS group have PTSD during pregnancy. 50% of TTTS- patients present an anxiety score over the threshold (STAI-Scale), with a score significantly higher in TTTS than in UMC (p
Advances in medical technology account for increasingly more couples receiving fetal diagnoses of complex congenital heart disease. Theory on internal working models of caregiving during parenting transitions informed this prospective, exploratory study. Data included conjoint interviews and measures of anxiety, trauma, and depression collected from six couples after diagnosis and after birth. Severity of illness was described using infant health records. Directed content analysis furthered understanding of the caregiving motivation to manage health care that included three categories of parental efforts: (a) to determine expectations of health care providers, (b) to reconcile illness- and non-illness-related care, and (c) to express agency as a parent. Synthesis of qualitative findings transformed into categorical ratings with parents' levels of distress resulted in two profiles characterizing types of internal working models. Findings extend theory on internal working models of caregiving and offer direction for future research regarding parental management of health care for their chronically ill offspring. Implications for practice with families are offered.
Abstract
Background: The information about fetal malformation findings during the ultrasound examination often comes unexpectedly, and the women and their partners may not necessarily receive any conclusive statement on the prognosis. A finding such as fetal hydronephrosis range from being a soft markers or mild anomaly, to a serious condition associated with neonatal morbidity and mortality. The aim of this study was to explore women’s reactions to the discovery of fetal hydronephrosis in the context of uncertainty regarding the prognosis.
Methods: Ten women were interviewed and the interviews were conducted six to twelve months after the women gave birth. They had experience of suspected fetal hydronephrosis in gestational week 18–20. The interviews were recorded, transcribed verbatim and analysed using constant comparative analysis.
Results: The core category, ‘Going through crisis by knowing that you are doing the right thing’ illustrates the meaning of women’s reactions and feelings. It illuminates the four categories: ‘When the unexpected happens’– on the one hand, women had positive views that the suspicious malformation could be discovered; however, on the other hand, women questioned the screening. ‘To live in suspense during pregnancy’ – the suspicious malformation caused anxiety and was a stressful situation. ‘Difficulties in understanding information’ – the women thought they had limited knowledge and had difficulties in understanding the information. ‘Suppress feelings and hope for the best’ – the women tried to postpone the problem and thought they should deal with it after delivery.
Conclusions: Women are worried irrespective of suspicious or severe malformations, and in need of information and counselling tailored to their individual needs. Other sources of support could be: written information, links to reliable sources on the Internet and possibilities for ongoing follow-ups.
Prenatal screening for foetal cardiac abnormalities has been increasingly practiced in Sweden during the last 25 years. A prenatal diagnosis may have medical benefits but may also cause sustained parental psychological distress. The aim of this study was to explore pregnant women’s, and their partner’s, experiences of counselling and need for support during continued pregnancy following a prenatal diagnosis of a cardiac defect. A second aim was to use this information to propose a structured follow-up programme for continued support after the first counselling.
Design: Qualitative study, using interviews performed 5–9 weeks after a prenatal diagnosis of congenital heart disease.
Setting: A tertiary foetal cardiology unit in Sweden
Sample: Six pregnant women and their 6 partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect.
Data analysis: Qualitative content analysis.
The analysis resulted in three themes. 1/ Counselling and making a decision - the importance of knowledge and understanding: Short waiting time for specialist evaluation together with clear and straightforward information was essential. Parents called for written information together with a high-quality website with relevant information about congenital heart disease. 2/ Continued support during pregnancy: Continued and easy access to health care professionals, including a paediatric specialist nurse, throughout pregnancy, was important. Contact with couples with similar experiences and social media were also considered valuable sources of support. 3/ Next step – the near future: Practical and economical issues during the postnatal hospital stay and the initial period following the hospital stay were common concerns.
The following aspects should be considered in a structured follow up program during pregnancy after a prenatal diagnosis of CHD; written information, access to a safe web-site with information of high quality in their native language, support from parents with similar experiences and continued contact with a specialist liaison nurse with experience of paediatric cardiology.
This prospective study investigated associations between prenatal attachment of adult first-time mothers to the unborn child, perinatal factors and levels of depression before and up to 18 months after delivery.
Primiparas (N = 161) without specific risk factors answered the following questionnaires during the last term of pregnancy (t1): Edinburgh Postnatal Depression Scale (EPDS), Maternal Antenatal Attachment Scale (MAAS), questionnaire on the schema of the unborn child, and a questionnaire about the pregnancy. Perinatal data were taken from the patients' files. The EPDS was answered 3 weeks (t2, N = 157), 6 months (t3, N = 159), and 18 months (t4, N = 132) postpartum.
During pregnancy, 16.9 % of the women indicated mild depressive symptoms, and 7.5 %, medium to severe symptoms of depression. Mild symptoms of depression were found in 25.5 % at t2, 10.1 % at t3, and 12.2 % at t4; medium to severe symptoms were reported by 7.6, 1.9 and 5.6 %, respectively. Women with low control during delivery (emergency Caesarean) showed a tendency for higher levels (p = 0.067) of depression at t3 than women with elective Caesarean did. The quality of prenatal attachment to the unborn child correlated negatively with depressive symptoms at t1-t4.
The closer the prenatal attachment of a mother to her unborn child, the less symptoms of depression she reports during the last term of pregnancy and postpartum. Therefore, promoting good mother-child attachment during pregnancy might influence the level of postpartum depression.
Difficult news has been described as any news that adversely and seriously affects an individual's view of their future. Research in oncology genetic counseling demonstrated that individuals do not prefer in‐person or telephone delivery of their genetic test results. However, in the prenatal setting, there is limited research examining how patients prefer news related to their pregnancies be disclosed. This study aimed to assess the experiences and preferences of prenatal patients who received difficult news by telephone. A semi‐structured interview guide was developed to assess patients' personal definitions of difficult news and their experiences receiving the news by telephone. Fifteen patients seen prenatally by a genetic counselor were interviewed. Interviews were transcribed and consensus‐coded, using inductive content analysis to identify several themes. The most common definition of difficult news included unexpected, life‐changing, or devastating information. Participants described aspects of their experience and strategies employed by their genetic counselor that was helpful when receiving the news, which was found to align with the SPIKES protocol, a six‐step process of delivering difficult news to patients. Additional techniques that participants identified as beneficial and satisfactory included the genetic counselor's use of empathy, non‐directiveness, and continuity and coordination of care. Participants also provided recommendations for improvement, including a discussion of the mode of result disclosure during pretest counseling, an option to follow up with their genetic counselor, personalized resources, and a summary of the results call. The findings of this study demonstrate that a patient‐centered approach is preferred by patients who receive difficult news by telephone in the prenatal setting. Patients' identification of beneficial communication techniques and suggestions for improvement can be implemented by any healthcare provider responsible for delivering difficult news to prenatal patients.
Breaking bad news is a common task many sonographers face within the clinical setting. Research has shown sonographers do not feel equipped to break bad news to pregnant women and their families. The aim of this study was to review current literature to determine if sonographers receive sufficient training to deliver bad news in the obstetric setting and what training individuals had received. Keywords were searched using PubMed, Google Scholar and Central Queensland University library. A total of 22 articles met the selection criteria and were analysed in this review. Four main themes were identified from these articles: (1) Sonographers felt underprepared to deliver bad news, (2) Sonographers felt training was or would be beneficial in delivering bad news, (3) A standard training protocol and guidelines should be implemented and (4) Training and preparation to deliver bad news can improve patient care and satisfaction. Improved communication and patient care could be achieved with the implementation of standard guidelines and training, within universities or via professional associations to ensure sonographers are prepared to deliver bad news.
Background
Informing couples about the diagnosis of severe fetal pathologies is part of the daily routine in fetal medicine. This situation is usually complex and can put untrained professionals in an uncomfortable position. The aim of this study was to assess the perception of health care professionals when faced with the need to announce a fetal pathology in order to target their training gaps in this domain.
Materials and methods
A questionnaire was created and disseminated on a national level among physicians practicing or collaborating with the multidisciplinary centers of prenatal diagnosis in France. The questionnaire focused on the difficulties encountered by practitioners when announcing fetal pathologies, and their potential interest in simulation sessions regarding the delivery of bad news.
Results
193 participants filled the questionnaire. 65% report not receiving any theoretical courses in this field during their initial training, 49% admit feeling uncomfortable when a fetal anomaly needs to be announced, 79.5% think that role-play could help them, 87.5% believe that training sessions in communication skills would help improve their methods and 73.1% support teaching the delivery of bad news by simulation sessions.
Conclusion
This survey illustrates the significance of announcing a fetal pathology for fetal medicine professionals. Many of them report not being properly trained to cope with this situation and would like to improve with a more practical way of teaching. Simulation would be the ideal educational tool to meet this demand.
Ultrasound imaging is an important screening and diagnostic tool in prenatal care, but for many couples in Canada and the United States, it is primarily a meaningful social ritual of seeing and meeting their baby. This article examines how women perceive ultrasound when they receive unexpected abnormal ultrasound findings. Drawing from qualitative analysis of semistructured interviews with 42 Canadian women, the article discusses women's reactions to receiving unexpected findings, and their perspectives on disclosure of results and on seeing the impaired fetus. Implications are discussed for practitioners regarding prescan counseling, informed choice, and disclosure of abnormal ultrasound findings.
Background:
In the UK, pregnant women are offered fetal anomaly screening to assess the chance of their baby being born with eleven different conditions. How healthcare professionals (HCPs) deliver news about a child having a congenital anomaly affects how it is received and processed by parents. We refer to this news as different news.
Methods:
We conducted a mixed methods evaluation of a training intervention to improve how HCPs deliver different news. 26 HCPs self-completed pre and post-training questionnaires on skills, knowledge, and attitudes related to delivering different news. Interviews were conducted with 8 HCPs. Quantitative data were analysed using descriptive statistics, and the paired t-test to compare the pre and post scores, estimate the difference between pre and post scores and the 95% confidence interval. Qualitative data were analysed using Framework guided by the Theoretical Domains Framework (TDF).
Results:
The training intervention was both feasible and acceptable. HCPs indicated that it enhanced or consolidated their knowledge and skills, covered topics relevant to their practice and that they would recommend it to colleagues. Participants particularly valued integration of the voice of parents with lived experience in the training. Significant increase in mean scores were observed in confidence to deliver different news (2.81, 95% CI 2.43 to 3.19; to 4.28 95% CI 4.09 to 4.47; P<0.001) and skills to deliver different news (3.00, 95% CI 2.64 to 3.36 to 4.36, 95% CI 4.13 to 4.59; P<0.001). HCPs reported feeling more confident in their ability to provide sensitive, responsive, balanced care to families.
Conclusions:
The significant improvements in confidence and skills reported by HCPs suggest that the training may be effective in equipping HCPs to minimise the distress, anxiety, and depression associated with receiving different news. This represents a key aspect of the prevention of mental ill health across the life course.
Objective:
Our study aimed to assess the impact of a simulation training program for residents for the disclosure of diagnosis on the psychological experience of couples following a first trimester pregnancy loss (PL).
Methods:
We performed an uncontrolled prospective single center, before-after study, at the gynecological emergency department of Angers University Hospital in France, between May 2014 and April 2015. We included all patients who had a confirmed diagnosis of first trimester PL. A self-administering questionnaire (SAQ) that included the short version of the perinatal grief scale (PGS) and questions about the couples' personal experience was sent by mail 8 weeks after the diagnosis. Patients were included before and after simulation training of the residents on the communication of the diagnosis of PL, and scores were compared between the two groups (before and after training).
Results:
Overall 72 patients fulfilled the inclusion criteria and responded to the SAQ, 45 before and 27 after simulation training. Overall, simulation training significantly lowered the overall PGS (39.4 ± 4.9 vs 57.3 ± 5.6, p = 0.03), significantly improved the attitude of the resident when announcing the diagnosis (more considerate (74.1% vs 48.9%, p = 0.04) and available (59.3% vs 28.9%, p = 0.01)), and significantly improved the quality of the information given (less incomprehensible (22.2% vs 46.7%, p = 0.04). Finally, significantly fewer patients reported needing an additional consultation for further information following training (33.3% vs 73.3%, p = 0.01).
Conclusion:
Simulation training of residents for the disclosure of early pregnancy loss significantly improves the couples' personal experience and decreases the psychological morbidity associated with the communication.
Reports from the UK Confidential Enquiries into Maternal Deaths and Morbidity are now published annually. In 2013–15, the maternal mortality rate was 8.8 per 100,000 maternities. Over two thirds of women died from medical and mental health causes and less than one third from obstetric causes. Cardiac disease remained the leading cause of maternal death in the UK. With the majority of women dying from pre-existing conditions, there remain multiple opportunities to reduce women's risk of complications in pregnancy through early and forward planning of the care of women with known pre-existing medical and mental health problems. Provision of appropriate advice and optimisation of medication prior to pregnancy, referral early in pregnancy for the appropriate specialist advice and planning of antenatal, intrapartum and postnatal care and effective postnatal provision of advice concerning risks and planning for future pregnancies are the key improvements needed to prevent women dying in the future.
Lymphatic malformations (LM) are a developmental anomaly arising from a somatic mutation in the lymphatic endothelial cells. This study investigated parental experiences associated with prenatal diagnosis of LM. Parents of 5 children diagnosed prenatally with LM were recruited from the Vascular Anomalies Clinic at the Royal Children's Hospital, Melbourne. Ten in-depth semi-structured interviews were conducted with each parent separately to explore their experiences and views at the time of diagnosis and immediately after childbirth. Transcribed interviews were coded and thematically analyzed. Parents experienced prenatal diagnosis of LM as an unexpected and traumatic event. The lack of adequate information and clear care pathway created confusion and added to the difficulty of understanding the impact of LM on the unborn child and what to expect after the child was born. Parents used the internet as the primary source of additional information; however, some parents found that information distressing. Differences between mothers and fathers were noted in terms of roles that each parent played and their emotional responses during pregnancy and the prenatal diagnosis. Closer connection between obstetric centers and specialized treatment clinics are suggested to facilitate better understanding of the LM impact on the unborn child and available treatment options after birth.
Objective
To evaluate residents’ ability to engage standardized patients in informed decision making during a pregnancy loss scenario.
Methods
Forty patient encounters between interns and standardized patients were coded to assess informed decision-making practices, exploration of unexpressed concerns, and support provision.
Results
Interns engaged in minimum informed decision making but did not address all of the communicative elements necessary for informed decisions, and most elements were only partially addressed. Patients in this study did not receive information about all management options, their concerns were not addressed, and there was limited support communicated for their decision.
Conclusion
This study offers an initial assessment of a communicative approach to evaluate and improve decision making during early pregnancy loss. A comprehensive approach to making informed decisions must include discussion of all management options, exploration of patient preferences and concerns, and support for the patient’s decision.
Practice Implications
Physicians could benefit from communication skills training to communicate more effectively with patients to help them make more informed decisions.
Objective:
A severe or lethal prenatal diagnosis places great demands on prospective parents, who face choices of far-reaching consequences, such as continuing or terminating the pregnancy. How best to support these parents is a clinical challenge. This systematic review aimed to identify and synthesize the qualitative evidence regarding prospective parents' responses to such prenatal diagnoses.
Methods:
Following PRISMA guidelines, four databases were systematically searched and 28 studies met the inclusion criteria. Thematic analysis guided data extraction and synthesis of findings. The CERQual assessment tool was utilized to assess confidence in the findings.
Results:
Prospective parents experienced multiple losses, e.g. of the healthy child, normal pregnancy and envisioned future.. After diagnosis, they requested timely and reliable information and empathetic continued interaction with clinicians. Prospective parents who continued the pregnancy wished to be acknowledged as parents, and engaged in planning to obtain a sense of meaning and control. Selective disclosure and concerns about negative responses were issues both for the parents who terminated and those who continued a pregnancy.
Conclusion:
Clinicians can support parental coping following a severe prenatal diagnosis through continued dialogue and collaboration. Further research is needed on the experiences of parents who choose to terminate a pregnancy following prenatal diagnosis.
Communicating bad news in obstetrics is challenging. This study explores the impact of how bad news was communicated to parents following a diagnosis of stillbirth. Qualitative in-depth interviews were conducted with 12 mothers and 5 fathers, bereaved following stillbirth at a tertiary maternity hospital where the perinatal mortality rate is 5.2/1000. Data were analysed using Interpretative Phenomenological Analysis. How the diagnosis of stillbirth was communicated had a profound and lasting impact on parents. Dominant superordinate themes were Language used, Sensitivity and Diversionary techniques. Parents recalled in detail where and how bad news was broken and language used. Diversionary techniques created a sense of mistrust especially when parents felt information was being withheld. Bereaved parents valued privacy at the time of diagnosis of stillbirth.This study highlights the importance of language, sensitivity and environment where clinicians can learn from the experiences of bereaved parents who value open, sensitive and honest communication. The results of this study highlight the importance of patient-focused communication training for clinicians.
Background: The diagnosis of a fetal anomaly in perinatal medicine forces expectant parents and healthcare providers to face the difficult process of breaking bad news.
Objectives: This exploratory literature review was aimed at providing a medical and psychological view of the psychological experience in expectant parents and physicians in the context of prenatal diagnosis of a fetal anomaly.
Method: An exploratory search of PubMed and PsycINFO/PsycARTICLES databases performed by an interdisciplinary team composed of a physician and psychologists. Search terms were: prenatal diagnosis AND bad news; prenatal diagnosis AND psychological consequences; prenatal diagnosis AND psychological sequelae; prenatal diagnosis AND fetal abnormality. The processing of selected articles followed a standardised five-step procedure.
Results: A total of 860 articles were screened of which 32 were retained for analysis. Four main themes emerged from the explanatory content analysis: (1) parents’ subjective experience; (2) physicians’ subjective experience; (3) encounters between expectant parents and professionals; and (4) ethical challenges in breaking bad news in prenatal medicine.
Conclusion: Expectant parents go through a complex and multidimensional experience when the diagnosis of a fetal anomaly is disclosed. Simultaneously, physicians consider breaking bad news as a very stressful event and are poorly prepared in this regard. A better knowledge of factors underlying psychological adjustment of the parental dyad and on the subjective experience of physicians delivering these diagnoses could enable better adaptation for both patients and professionals.
Background:
Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy.
Objectives:
To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period.
Design:
A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews.
Results:
Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the "normal" twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing.
Conclusions:
Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.
Objectives:
To explore parents' experiences of counselling after prenatal diagnosis of congenital anomalies of the kidney and urinary tract.
Materials and methods:
Parents of a child born between September 2012 and March 2015 with posterior urethral valves (PUV) or multicystic dysplastic kidney (MCDK) completed a semi-structured telephone interview, demographic survey, and the Depression, Anxiety and Stress Scales (DASS21). Qualitative data were analysed thematically using NVivo10 software.
Results:
Seventeen parents (PUV n=8; MCDK n=9) participated (response rate: 40%), and most were offered counselling during pregnancy (14/17). Parents described feelings of shock, fear and uncertainty following diagnosis, and desired early information on all aspects of their child's condition. Most participants were satisfied with the information received; however, unmet information needs relating to treatment and prognosis were identified, particularly amongst fathers and parents in the PUV group. Some parents felt relieved after counselling (12/17); however, emotional distress often persisted long after diagnosis. Parents described a need for written and web-based information resources, specialised psychological services, and parent support groups.
Conclusion:
While parents valued counselling, many continued to report unmet informational and psychological needs. Early counselling addressing topics important to parents and provision of additional resources and support services may improve parents' adjustment to their baby's diagnosis. This article is protected by copyright. All rights reserved.
Objective:
Prenatal diagnosis of fetal anomalies may arouse fear, anxiety and distress in parents, and counselling may assist parents to cope with the diagnosis. This systematic review aimed to; (a) synthesise the evidence on the impact of non-genetic, prenatal counselling after fetal diagnosis of a congenital anomaly on parental knowledge and psychological adjustment, and (b) identify parents' preferences for the timing and format of counselling.
Method:
Five electronic databases was systematically searched to identify studies assessing prenatal counselling provided to parents after prenatal diagnosis of one or more structural congenital anomalies. Data was extracted using predefined data forms, according to the PRISMA guidelines, and synthesized.
Result:
Twenty four articles were included for review; most articles reported results of retrospective surveys and the quality of included studies was variable. Only three studies assessed parental anxiety, and each reported a significant decrease in anxiety following prenatal counselling. Parents expressed a preference for counselling on all aspects of their baby's anomaly as soon as possible after prenatal diagnosis, and desired written, visual and web-based information resources, and support group contacts.
Conclusion:
Although prenatal counselling reduced parental anxiety, further research is needed to adequately assess the impact of prenatal counselling on other psychological outcomes. This article is protected by copyright. All rights reserved.
Objective:
To estimate whether a novel structured curriculum could significantly improve medical student performance in early pregnancy loss counseling.
Background:
Medical students receive limited exposure to early pregnancy loss counseling through real-life observation of this important skill.
Methods:
A pre-post control group design was used to examine early pregnancy loss counseling performance among medical students from two medical schools doing their obstetrics and gynecology rotations at the same community hospital. The study outcomes were: (1) pre-post differences in Standardized Patient Objective Structured Clinical Examination scores; (2) pre-post differences in student confidence levels; and (3) postdifferences in standardized patient empathy ratings. Both groups had similar demographics, academic parameters, and longitudinal curricula. The study group (N=39) received a curriculum of demonstration and role-playing for delivering bad news and a shared decision-making model for early pregnancy loss management. The control group (N=38) received traditional instruction.
Results:
Standardized Patient Objective Structured Clinical Examination posttest scores were significantly higher for the study group compared with the control group (94.2% compared with 69.7%, P<.001) after starting with similar pretest scores (64.0% compared with 61.6%, P=.53). Posttest confidence levels (1=high, 5=low) were significantly higher for the study compared with the control group (1.57 compared with 3.62, P<.001) after starting at similar levels (4.27 compared with 4.23, P=.79). Standardized patient empathy ratings (1=high, 5=low) were significantly higher for the study compared with the control group (1.84 compared with 2.62, P=.002).
Conclusion:
A structured curriculum for teaching early pregnancy loss counseling improved student performance on standardized Objective Structured Clinical Examinations compared with traditional instruction. Providing these counseling tools improved their confidence and empathy ratings in caring for patients with early pregnancy loss.
The delivery of bad news by oncologists to their patients is a key moment in the physician-patient relationship. We performed a systematic review of qualitative studies (a metasynthesis) that focused on the experiences and points of view of oncologists about breaking bad news to patients.
We searched international publications to identify relevant qualitative research exploring oncologists' perspectives about this topic. Thematic analysis, which compensates for the potential lack of generalizability of the primary studies by their conjoint interpretation, was used to identify key themes and synthesize them. NVivo qualitative analysis software was used.
We identified 40 articles (> 600 oncologists) from 12 countries and assessed their quality as good according to the Critical Appraisal Skills Programme (CASP). Two main themes emerged: the patient-oncologist encounter during the breaking of bad news, comprising essential aspects of the communication, including the process of dealing with emotions; and external factors shaping the patient-oncologist encounter, composed of factors that influence the announcement beyond the physician-patient relationship: the family, systemic and institutional factors, and cultural factors.
Breaking bad news is a balancing act that requires oncologists to adapt continually to different factors: their individual relationships with the patient, the patient's family, the institutional and systemic environment, and the cultural milieu. Extending the development of the ability to personalize and adapt therapeutic treatment to this realm of communications would be a major step forward from the stereotyped way that oncologists are currently trained in communication skills.
© 2015 by American Society of Clinical Oncology.
We describe a protocol for disclosing unfavorable information—“breaking bad news”—to cancer patients about their illness. Straightforward and practical, the protocol meets the requirements defined by published research on this topic. The protocol (SPIKES) consists of six steps. The goal is to enable the clinician to fulfill the four most important objectives of the interview disclosing bad news: gathering information from the patient, transmitting the medical information, providing support to the patient, and eliciting the patient’s collaboration in developing a strategy or treatment plan for the future. Oncologists, oncology trainees, and medical students who have been taught the protocol have reported increased confidence in their ability to disclose unfavorable medical information to patients. Directions for continuing assessment of the protocol are suggested. The Oncologist 2000;5:302-311
Objective: To investigate how the prenatal diagnosis of a sex chromosome anomaly is first communicated to parents. Design: Health professionals were interviewed by telephone and the conversation was taped; parents were sent questionnaires at 1 month after diagnosis and those who responded were sent another at 6 months. Participants: 29 health professionals who had recently informed parents that a sex chromosome anomaly had been identified in an apparently anatomically normal, viable fetus. 23 mothers and partners who had been informed of such a diagnosis. Main outcome measures: Health professionals' knowledge about sex chromosome anomalies and parents' responses to information provided by health professionals. Results: Analysis of the telephone interviews identified great variation in what different healthcare professionals know, think, and say about the same sex chromosome anomaly. The small numbers and the low response rate for the questionnaire (39% for women and 30% for men) meant that statistical analysis was not appropriate. Conclusions: It is essential for obstetric units to have an established protocol for giving results and for all staff who communicate results to parents to have accurate, up to date information about the condition identified.
This is a qualitative descriptive study evaluating the maternal response after the woman has learned her pregnancy has a poor prognosis via telemedicine rather than in a traditional, face-to-face, consultation method. In general, telemedicine was positively viewed by the participants; however, the experience may be markedly improved by implementing several simple changes in the overall consultative process. © 2013 The Authors ANZJOG © 2013 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.
This qualitative study analyzed stillbirth notification messages recalled by parents who strongly agreed (n = 47) and strongly disagreed (n = 43) that the way news about the death of their infant was delivered negatively impacted their grieving process. Three message elements formed a core stillbirth notification experience (delay of news delivery; expression of sympathy; communication of death), and three additional message elements occurred in both data sets (communication regarding options; expression of uncertainty; exit of health care provider); however, the messages differed in form and frequency between the two groups. Three message elements reflected opposing experiences for the two groups (support of parent emotion; continuity of care; and information provision). Recommendations for stillbirth notification that emphasize acknowledging parent perceptions, clear language and information, empathetic communication, and continuity of care are given.
Objective. Ultrasound scans have become a routine part of antenatal care. Recent developments have meant that ultrasound has gone beyond monitoring the pregnancy and diagnosis of major abnormalities. Its routine use now includes screening for subtle fetal abnormalities and indications of chromosomal abnormality. Unfortunately ultrasound screening for chromosomal abnormalities has a low positive predictive value (similar to maternal serum screening), and only about 2% of pregnancies identified as ‘high risk’ will be diagnosed with a chromosomal abnormality. The other 98% of ‘high risk’ results are termed ‘false positive’. The aim of this paper is to elucidate the range of subjective experiences of women in response to having these results. Method. The approach employed was interpretative phenomenological analysis. Semi-structured interviews were carried out with 24 pregnant women after ‘false positive’ ultrasound results. These were subjected to a qualitative analysis. Results. Participants perceived the ultrasound scan primarily as a social, non-medical event and were unprepared for the result the scan elicited. Two-thirds described residual feelings of anxiety even after normal diagnostic results were known, sometimes attributed to continued fears about fetal abnormality, but more often attributed to a generalized feeling that something else unexpected could happen to threaten the pregnancy. Conclusions. The paper has pointed to important discrepancies in the experiences of women undergoing ultrasound screening and the aims of informed choice. We would suggest consideration should be given to providing information on both the medical purposes of screening and on possible outcomes from it. The study also points to the possible need for counselling support for the majority of women who go on to receive confirmation of a negative diagnosis, counselling addressed at helping women to readjust to having a ‘low risk’ pregnancy.
Background: It is acknowledged that health professionals have difficulty with breaking bad news. However, relatively little research has been conducted on the experiences of women who have had a fetal anomaly detected at the routine pregnancy ultrasound examination. The study objective was to explore women’s experiences of encounters with caregivers after the diagnosis of fetal anomaly at the routine second trimester ultrasound scan. Methods: The theoretical perspective of symbolic interactionism guided this study design. A purposive sample of 38 women, at low risk of fetal abnormality, who received a diagnosis of a fetal abnormality in a tertiary referral center in Ireland, were recruited to participate. An in-depth interview was conducted within 4–6 weeks of the diagnosis. Data were collected between April 2004 and August 2005 and analyzed using the constant comparative method. Results: Six categories in relation to women’s encounters with caregivers emerged: information sharing, timing of referral, getting to see the expert, describing the anomaly, availability of written information, and continuity of caregiver. Once an anomaly was suspected, women wanted information quickly, including prompt referral to the fetal medicine specialist for confirmation of the diagnosis. Supplementary written information was seen as essential to enhance understanding and to assist women in informing significant others. Continuity of caregiver and empathy from staff were valued strongly. Conclusions: The way in which adverse diagnoses are communicated to parents leaves room for improvement. Health professionals should receive specific education on how to break bad news sensitively to a vulnerable population. A specialist midwifery or nursing role to provide support for parents after diagnosis is recommended. (BIRTH 34:1 March 2007)
The aim of the study was to explore pregnant women's experiences of received information in relation to fetal malformation detected on ultrasound.
An exploratory descriptive design was used. Semi-structured interviews with women who continued their pregnancy and women who chose to terminate were audiotaped, the information pathway described, and the text subjected to qualitative content analysis.
Most of the women who expected a baby with an abnormality experienced the information given as insufficient, often misleading, conflicting, or incoherent, and sometimes negative. Important factors for interaction between women and caregivers were timing, duration, and manner of the initial dialog and ongoing support. Positive interactions improved the women's ability to understand the information, fostered feelings of trust and safety which reduced their anxiety.
Women expressed dissatisfaction both regarding the care-givers' methods of giving information and apply for information from different specialists and continuity. The study highlights important factors which may be helpful to the professionals for improving the information to this vulnerable group of women.
Efficient prenatal risk communication hinges upon parents' grasp of statistical information. When forming their subjective representation of a probability, pregnant women may focus on inappropriate factors and ignore the appropriate factors.
The present research investigates the subjective probability that pregnant women derive from statements of the form 'There is a 1 in X chance that the baby will have condition Y,' where the number X and the severity of the condition Y were orthogonally manipulated.
Study 1 showed that when judging how big is a 1 in X chance that a child will be affected by condition Y, pregnant women (n = 336) were sensitive to the severity of Y, but selectively numb to the objective number X. Study 2 (n = 461) replicated this pattern, but also showed that numerical numbness could be overcome by a simple intervention, namely, a quick comment that 1 in X was 'above average.'
Practitioners must be aware that when forming a subjective probability assessment, pregnant women might be inappropriately sensitive to the severity of Y, and inappropriately numb to the number X, and that a simple communicative intervention can help in overcoming this selective number numbness.