This study describes current levels of training and confidence as reported by health professionals in providing practical and emotional care to parents who have lost a baby from a twin pregnancy. Less than half of respondents had received training on this important aspect of clinical care and the majority of respondents felt more training and further guidelines were needed. Whilst there was a high level of confidence reported in providing practical support when caring for parents in this situation, almost a third of respondents reported having little confidence when providing emotional support to parents. Continuity of care was also reported to be less than satisfactory by a third of respondents. For less experienced health professionals, confidence in providing emotional support was reported to be lower than for those with more experience.
We chose to use an online survey to capture responses as this provided a pragmatic approach to gather important information from a range of health professionals working in relevant specialties and in different environments. We acknowledge that there may have been other organisations that could have been relevant to include and that our approach only provided a snapshot of opinion and experience. There may be some bias in the responders, as to respond required access to the internet and also membership of the professional body or professional email distribution lists that we contacted. Although we provided the opportunity for respondents to give free text responses, there may be other relevant areas that we did not include in the survey. It has been shown that self-assessment has limitations with clinicians tending to underreport their skill level [5]. We divided age into two groups: over and under 45 years of age. This was a pragmatic decision based on the lower number of respondents in the younger age groups. We received more responses from females reflecting the overall gender distribution within these professions. However, we received responses from all of the relevant specialties (obstetrics, midwifery, fetal medicine and neonatology), from across the UK, from those working in different hospital settings and self-rated confidence in clinical and practical care provided to parents was high.
The available literature on bereavement care following loss from a twin pregnancy is scarce. However, existing studies recognise that parents who lose one twin have a complex set of emotional needs that may differ from those parents who lose a singleton [2]. The following review of studies, although relevant in relation to the training needs of health professionals working with bereaved parents, comes mainly from experiences of the loss of a singleton baby. An interview-based study with eight nurses in Canada found that communication with bereaved families can be particularly challenging and intimidating to nurses, especially for those with little experience [6]. A qualitative study of 19 health professionals (nurses, midwives, nursing auxiliaries and obstetricians) from one hospital in Córdoba, Spain, showed that health professionals may experience feelings of sorrow, anxiety, guilt, failure and helplessness related to not knowing how to deal with perinatal loss [7]. It was also common for professionals dealing with perinatal death to focus on physical care, thus avoiding the emotional aspects, in an attempt to decrease anguish [7]. In the present study, 26.3% of respondents felt less confident about providing bereavement support compared to providing medical care (14.7% felt more confident). It has been reported that in order to support families through bereavement, nurses need to confront the ‘negative social norms on death’. This includes the way in which they are supported by or confined by institutional practices [6]. Having an institutional policy for bereavement care is considered beneficial, as it ‘empowers’ the staff member [6]. Nurses who were surveyed in five hospitals in Hong Kong, perceived perinatal bereavement training to be important/very important. Nearly 90% of the nurses felt that training would equip them with relevant knowledge and skills to be able to support parents [8]. A further study in Hong Kong among 101 individuals who offered perinatal bereavement support found that having adequate training could help to increase levels of perceived self-confidence [9]. Past experience and age of the health professional is positively associated with a higher perceived self-confidence in caring for grieving parents [8, 9].
In the present study, approximately a third of the respondents felt that their current training/guidelines were inadequate and just over half reported that more training/guidelines would be helpful. In previous work, health professionals expressed a desire for more specialist training in supporting parents who had lost a baby from a twin pregnancy [3]. Following on from this work, and work with parents who have experienced twin pregnancy loss [2], we have developed guidelines for supporting health professionals dealing with bereavement from a twin pregnancy [10]. Positive behaviours and actions that staff can adopt reported to be appreciated by parents, as well as things that parents may find upsetting and insensitive, are summarised in the guidance. Although the guidelines focus on supporting parents, the importance of staff wellbeing in dealing with these challenging circumstances is also emphasised. It is recommended that provision for staff to reflect on the emotional impact of their work should be made within the NICU. This survey identified that health professionals with less years’ experience were likely to be less confident in and less likely to have had training for providing emotional support for parents. In 2018, The National Bereavement Care Pathway for Pregnancy and Baby Loss [11] was published; contained within it is advice for staff dealing with all types of loss. The following have been highlighted as important: Recognise their own support needs; Identify their own training needs; Communicate these needs to management and colleagues; Ensure they are aware of the support structures and systems in place within their Trust; Be aware of the stresses and challenges faced by colleagues and, where appropriate, flag support systems to them [11].
Staff awareness of their own needs and available support structures will undoubtedly contribute to confidence and coping skills in aiding parents experiencing loss. However, as raised in this study and in previous literature, there is a need for specific guidance in dealing with twin pregnancy loss. The guidelines developed as a result of this survey study and previous work [2, 3] aim to address this need [10, 12]. However, further research is needed to enable health professionals to understand more fully the complex needs of parents who experience the death of a twin in utero, at birth or in the neonatal period [3].
