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Providing perinatal loss care: Satisfying and dissatisfying aspects for midwives
Women and Birth (2007) 20, 153—160
a v a i l a b l e a t w w w. s c i e n c e d i r e c t . c o m
journal homepage: www.elsevier.com/locate/wombi
Providing perinatal loss care: Satisfying and dissatisfying aspects for midwives Jennifer Fenwick a,b,*, Belinda Jennings b, Jill Downie c, Janice Butt a,b, Mayumi Okanaga c a
Curtin University Technology & King Edward Memorial Hospital, School of Nursing and Midwifery, Curtin University of Technology, GPO Box U1987, Perth, WA 6845, Australia b King Edward Memorial Hospital, Perth, WA, Australia c Maternal Health Care Nursing, Kobe City College of Nursing, Kobe, Hyogo, Japan Received 16 July 2007; received in revised form 12 September 2007; accepted 17 September 2007
KEYWORDS Perinatal loss; Midwives; Continuity of carer; Maternity care; Components of care; Grief
Summary Purpose: There is limited midwifery research that focuses on midwives experiences and attitudes to providing care for women who experience the death of a baby. There is also limited research investigating care components, and evidence to inform the basis of clinical practice in Australia and internationally. This paper presents the qualitative findings of a small study that aimed to investigate midwives experience, confidence and satisfaction with providing care for women who experienced perinatal loss. Procedure: Eighty-three Western Australian midwives responded to an open ended question asking them to describe the most and least satisfying aspects of their role when providing care to women who experienced a perinatal loss. Thematic analysis was used to analyse the data. Findings: The analysis revealed that Australian midwives gained most satisfaction from providing skilled midwifery care that they considered made a difference to women. This was enabled when midwives were afforded the opportunity to provide continuity of midwifery carer to women throughout the labour, birth and early postnatal period. In terms of the least satisfying aspects of care, midwives identified that they struggled with the emotional commitment needed to provide perinatal loss care, as well as with how to communicate openly and share information with women. Conclusions and implications for practice: Within the context of the study setting, midwifery care for women following perinatal loss reflects the care components espoused in the literature. There are, however, organisational issues within health care that require commitment to continuity of care and further education of practitioners to enhance outcomes for clients. # 2007 Australian College of Midwives. Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd). All rights reserved.
* Corresponding author. Tel.: +61 8 9266 2056/9340 1672; fax: +61 8 9266 2959. E-mail addresses: [email protected] (J. Fenwick), [email protected] (M. Okanaga). 1871-5192/$ — see front matter # 2007 Australian College of Midwives. Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd). All rights reserved.
doi:10.1016/j.wombi.2007.09.002
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Introduction The role of the midwife is to support women through the significant and normal life event of pregnancy, birth and early parenting. Unfortunately this journey does not always result in the birth of a live baby. ‘Being with’ women and their families as they experience perinatal loss requires midwives to be open to the pain, complexity and uniqueness of grief. Caring for bereaved families can cause distress and discomfort which may be both personally and professionally challenging for the midwife. Research into the perinatal loss experience has largely been undertaken within the discipline of psychology. Early work has relied heavily on psychometric assessment with much of this research centred on testing various components of care (interventions such as holding the baby, naming the baby, taking photos) provided by midwives and other health care professionals.1 Hughes2 credited the enormous change in practice that has occurred over the last 25 years to this initial clinical interest in the perinatal loss experience. As a result, there has been an increase in literature that has advocated open recognition of parents distress, contact with the baby, including seeing and holding the baby, and the creation of mementos such as photographs and footprints. While all of these are believed to facilitate the mourning process,3—6 more recent work by Hughes et al.7 questioned whether ‘all’ components of perinatal loss care are psychologically helpful to ‘all’ women ‘all’ of the time. In a matched case control study that enrolled 65 women experiencing stillbirth, the researchers reported that ‘seeing and holding’ the baby was associated with higher levels of grief than just ‘seeing’ the baby. Women who had held their stillborn infant were more depressed, had greater anxiety and higher symptoms of post-traumatic stress disorder (PTSD) than those who only saw the infant. The authors stressed the nature of adopting an individualised approach to care rather than an institutionalised one. Similarly, a recent Australian study revealed higher grief scores in women who spent more time with their baby compared to those spending less time.8 Research has also suggested that clinicians should be encouraged to focus on providing woman centred care; facilitating the grief process, acknowledging and validating the individual’s experience, and providing continuing community care.9—11 In addition, other authors12—15 have argued that midwives in particular have a unique role in supporting recently bereaved families, as they are the ones mostly likely to be involved in the experience with the family. Although there have been numerous studies on preparing nurses to support terminally ill patients and their families, and to a lesser extent on neonatal nurses perceptions of end of life care, there is limited literature describing midwives awareness, behaviour and attitudes towards perinatal loss care.8 The role and responsibilities of the midwife in meeting the needs of grieving parents has seldom been explored. There is also inadequate research investigating care components16,17 and evidence to inform the basis of clinical practice in Australia, internationally and across cultures.18—20 The literature shows that carers who are close to the experience, such as midwives and nurses, have a range of intimate experiences with bereaved women and families. Mander21 explored the stressors midwives associated with perinatal loss care and identified fours main factors; difficulty dealing
J. Fenwick et al. with grieving parents, lack of a happy outcome, mother’s anger, and limited resources. Later work by Gardner22 demonstrated commonality between midwives and nurses working in the United States, England and Japan, with many expressing that they lacked mentored experience, communication skills, knowledge and thus confidence and competence in providing sensitive care to families whose baby has died. As such there is a need to explore midwives perceptions of their role and responsibilities during the perinatal loss experience in order to further assist and improve care for women and their families.
Aim The qualitative findings presented in this paper form part of a larger study that aimed to identify midwifery care and midwives perceived competence in providing care following perinatal loss, and to compare midwifery care in this area of practice in Australia and Japan. The specific objectives of the larger study were: to compare midwives cognition of the care components provided in each country, and to explore midwives perception/self-assessment of their competence in providing care following perinatal loss.23 The third objective, which was to describe midwives’ perceptions of the most and least satisfying aspects of providing perinatal loss care to women, is reported in this paper.
Method The study was descriptive in nature and undertaken in two phases. Both quantitative and qualitative data collection techniques were employed. The first phase pilot-tested the newly developed Midwifery Components of Perinatal Loss Care: Frequency Scale (MCC) for clarity, internal consistency and content validity.24 In phase two, a questionnaire which encompasses the MCC, was administered to midwives working at a large maternity hospital in Western Australia (WA). At the end of the questionnaire, midwives were asked to describe the most and least satisfying aspects of providing care to women and their families who had experienced the death of a baby. It is the findings of this open-ended question that are the focus of this paper.
Setting and participants King Edward Memorial Hospital (KEMH) is WA’s only tertiary referral centre and conducts approximately 5500 births per year (one fifth of the state’s total). The hospital provides perinatal loss care to approximately 200 women and families per year and has a dedicated Perinatal Loss Service Outpatient Clinic. All women who have experienced a perinatal death at the tertiary obstetric hospital are offered follow-up at the outpatient clinic. On admission to the labour ward, women are allocated a midwife that provides continuity of care until discharge. Midwives and a small number of nurses employed at KEMH formed the study cohort. Of a potential 200 participants, 140 (70%) returned a questionnaire with 111 meeting the inclusion criteria of having cared for a woman and her family experiencing a perinatal loss on more than one occasion in the preceding 12 months. Nine participants were registered
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Providing perinatal loss care Table 1 Demographics characteristics of the Western Australian participants
Initial nursing education Nursing hospital based qualification Nursing tertiary qualification Total Missing
Australian cohort (n = 140)
Recruitment and data collection
n
Non-probability convenience sampling was used to recruit midwives with the most experience in this area. Global emails, posters and in-service education sessions were used to inform potential participants about the study. Questionnaires, with attached envelopes and information sheets, were made readily available in all the ward areas. Midwives were asked to return completed questionnaires using the internal mail system. As no identifying data was collected, and the questionnaires were not coded, consent was implied. Of the 111 eligible respondents, 83 (75%) made 150 comments about the most satisfying aspects of providing perinatal loss care with 62 (55%) midwives making 67 comments about the least satisfying aspects of their work. Three midwives commented that there was nothing satisfying about providing care to families experiencing the death of a baby.
%
89
65.0
48 137 3
35.0 100
88
65.5
46
34.5
Initial midwifery education Midwifery hospital based qualification Tertiary midwifery qualification Total Missing
134 6
Postgraduate qualifications BA nursing a PG/nurse or midwifery Masters PhD Certified expert nurses Other
69 49 6 1 0 30
49.3 35.0 4.3 0.7 0 21.4
27 17 19 31 46 140 0
19.3 12.1 13.6 22.1 32.9 100
9 24 22 30 55 140
6.4 17.2 15.7 21.4 39.3 100
Length of time worked nurse Never Less than 3 years 3—5 years 6—15 years 16 years and greater Total Missing Length of time worked midwife Never Less than 3 years 3—5 years 6—15 years 16 years and greater Total Missing
nurses only. Please see Table 1 for detailed demographic information.
100
Employment status Full time Part time Casual Other Total Missing
67 65 7 1 140 0
47.9 46.4 5.0 0.7 100
Current position RN 1 RM/RN 1 RM/RN 2 Other Total Missing
5 63 65 7 140 0
8.1 45.0 46.4 5.0 100
a Some midwives had both a BA in nursing and another PG qualification.
Data analysis Thematic analysis was used to analyse the data. The process followed in this study resembles what Polit and Beck25 have termed template analysis. All written responses were transcribed into a computer document and formatted into a table. Common concepts were identified and clustered to form a coherent pattern of themes that captured the essence of the meaning of the responses.26—28 During data analysis meetings the identified clustered concepts were discussed, and the investigators then, by consensus, combined the related patterns into tentative themes. Audit trails were used to document the researchers reasoning, rationale and justification for decisions made and conclusions drawn.28 Please see Table 2 for an example of an audit trail.
Ethical considerations Ethical approval was granted by Curtin University of Technology Human Research Ethics Committee and King Edward Memorial Hospital Ethics Committee.
Findings: most satisfying aspects of perinatal loss care For the midwives in this study, satisfaction came from being able to ‘live’ the continuity of midwifery care model. Three major themes contributed to this overarching theme and were labelled: ‘Connecting with families’; ‘The ‘very best’: primary midwifery care; ‘Making a difference’. A fourth major theme, ‘Supportive environment’, referred to the context in which perintal loss services were organised and delivered at the hospital in which the midwives were employed.
Connecting with families Providing continuity of care was a common theme in the data and was seen as facilitating connection. The essential ele-
156 Table 2
J. Fenwick et al. Audit trail for the sub-theme ‘listening to the grief’
Raw data
Concepts Sub-theme
I feel I can offer a lot to these couples and that I know how to talk to them, thereby making a difference to how they cope afterwards (77). Being open and honest and talking openly about their baby instead of skirting around the subject (83). Open enough so clients feel they could approach and talk about anything (108). Building rapport by recognising her loss. . . listening to her grief (30). Encouraging parents to talk and express their feelings and just providing an ear/shoulder for them (83). Allow parents to talk and begin the grieving process (103). Privilege to assist families grieve (132). Understanding that people cope in very different ways and accepting that there is no right or wrong way just their own individual way (103). Respect everyone greaves in different ways (24). Helping them express their grief and loss (55). Share their sadness of their lost dreams (27). Being able to help the parents acceptance/grieving by being the primary carer (68). Being with families and offering support during their grief (87). Sharing the grief but being positive and supportive (125) Talking, open, honest, listening, expressing, crying with, sharing, offering, acknowledging and assisting grief, understanding unique process, respecting, honour life, supporting grief, sharing grief Listening to the grief
ments of continuity were described as having ‘lots of time’, ‘spending time’ and ‘devoting time’. The midwives’ perception was that having time allowed them to ‘be with’ and ‘connect to’ women which ultimately enhanced relationships. Establishing ‘rapport’, ‘friendships’ and ‘close and emotional bonds’ with families was considered an important part of perinatal loss care and was therefore essential in providing satisfying quality care. As one midwife said, ‘The most satisfying (aspect of care) is the relationship I develop with the woman and the family’. Continuity of midwifery carer was also considered important in facilitating family focused care across the hospital stay. Midwives described ‘connecting’ and ‘following families through’ as a source of great satisfaction. The midwives articulated how continuity of carer allowed them to meet the individual needs of women and their partners and/or families, by ‘coordinating’ all the services that the family may need during their admission.
The ‘very best’: primary midwifery care As a result of the continuity of care midwives described how satisfying it was to be the primary carer; providing what they considered was the ‘very best care’ midwives had to offer. Midwives perceived that working with families experiencing a perinatal loss in this way meant they could practice to the full extent of their skills and qualification. Satisfaction, as one midwife said, came from providing ‘excellent midwifery care’. The components of this midwifery led perinatal loss care were identified as; sensitive supportive care, being flexible, responding to individual needs, facilitating understanding, creating special memories, and listening to and sharing the grief. Sensitive supportive care Compassion, support, sensitivity, empathy, kindness, and reassurance were some of the words midwives used to describe providing sensitive, supportive, physical and emotional care. Midwives wrote about the importance of ‘respecting’ parents and making sure that care was delivered in a sensitive way, in a ‘private’ environment. Midwives considered this to be very important in providing them with
a sense of purpose, achievement and satisfaction. As one midwife said, ‘it’s rewarding knowing you have supported them through and hopefully made a traumatic time easier’. Being flexible: responding to individual needs Midwives commented that they liked providing ‘responsive’ sensitive care that was ‘flexible’, ‘adaptive’ and ‘accommodating’. Meeting and responding to all parents ‘requests’ within a ‘safe’ and ‘private’ environment was important to midwives. For example, when describing satisfaction, one midwife wrote ‘responding individually to family needs’. An important component of this sub-theme was to ensure families had ‘input’ and were involved in decisions made about their care. While midwives recognised that women and partners were often in a state of shock they also acknowledged that it was important for them to be active participants in what was happening around them. Facilitating understanding Helping women, partners and families understand what was happening to them after the death of their baby, and what was likely to happen over the coming days was an important aspect of providing perinatal loss care. Midwives considered sharing information and knowledge with families a way of relieving anxiety and assisting women to ‘gain control’. Creating special memories Facilitating an environment in which ‘special’ and ‘positive’ memories could be created was a strong theme in data. Midwives talked about the ‘precious’ moments couples could have with their baby and how this was achieved by encouraging, supporting and helping parents to feel comfortable holding, bathing, wrapping, and taking photos and foot prints of their baby. As one midwife said, satisfaction came from, ‘encouraging families to spend time with their baby and offering suggestions to enable them to create memories’. Midwives also wrote about acknowledging the baby as ‘real’ through such activities as naming the baby and saying goodbye as parents. Listening to, and sharing the grief Being actively involved in helping women deal with the grief they were experiencing was considered a satisfying aspect of
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Providing perinatal loss care care by many of the midwives. The midwives talked about the ‘uniqueness’ of such an experience, and about how every woman dealt with grief in different ways. For example one midwife commented, ‘understanding that people cope in different ways and accepting that there is no right or wrong way — just their own individual way’. A second midwife wrote that she gained satisfaction from ‘giving parents freedom to grieve in their own way’. Being open and honest with women about what was happening to them and around them was important to midwives. Midwives gained a sense of achievement and satisfaction from knowing they had the ability to, ‘talk openly about the baby instead of skirting around the subject’. This was considered a way of helping parents feel comfortable to ask questions and to be able to ‘talk about anything’, with an aim to help them express their feelings. Comments such as, ‘allow parents to talk and begin the grieving process’ care common in the data set. As one midwife summarised, ‘recognising her loss and listening to her grief’ foster this aim. Midwives also described the satisfaction gained from feeling ‘privileged’ to be part of such a unique life/death journey. The midwives talked about the individual ‘uniqueness’ of such an experience and how every woman and her family dealt with it in different ways. For example one midwife commented, ‘understanding that people cope in different ways and accepting that there is no right or wrong way just their own individual way’. A second midwife said she gained satisfaction from ‘giving parents freedom to grieve in their own way’. Being able to ‘share’ this experience was viewed as an important and positive way to ‘honour’ and ‘respect’ the baby’s life and existence.
Making a positive difference The analysis revealed that for a large majority of the midwives in this study, satisfaction was a consequence of knowing that they had ‘helped’ and ‘made a difference’ to the woman and her family. Midwives described how they worked hard to provide care that, despite the tragic nature of the circumstances, was considered by clients to be positive. Perhaps the following two comments best capture this; ‘Helping parents feel positive about the experience even though a loss has occurred’ and ‘Make just a small difference to how they remember the event years later’. Midwives also gained satisfaction through ‘knowing’ women and families were ‘thankful’ and ‘grateful’ for the care received. Receiving positive ‘feedback’ was important and provided midwives with a sense of achievement. For example one midwife wrote ‘when parents thank you for your care even though they are totally devastated by their loss’.
Supportive environment Midwives satisfaction was related to the organisational context or environment in which the care was delivered. Many of the midwives described how important it was for the hospital to ‘acknowledge loss and grieving’. The midwives comments made it clear that being supported by the hospital to provide continuity of midwifery care, within an integrated system that allowed them to manage and coordinate total care across a range of service providers, was not only satisfying but extremely comforting as well. As one midwife said, ‘the
sheer quantity and quality of our resources is comforting for them (women) and me as a carer’.
Findings: least satisfying aspect of perinatal loss care Sixty-two midwives made comments about what they considered to be the least satisfying aspects of providing perinatal loss care. The analysis revealed two main themes. The first related to ‘personally challenging experiences’ and contained the sub-themes ‘emotional commitment’ and ‘feeling unsure’. The second was a contextual issue which reflected dissatisfaction with, and issues surrounding, being unable and/or unsupported to provide continuity of care.
Personally challenging experiences Being emotional overwhelmed This sub-theme clustered the comments that reflected midwives perceptions of how ‘emotionally draining’ providing perinatal loss care to women could be. Midwives described how difficult and stressful it was to ‘witness’ the ‘trauma’ ‘shock’ and ‘disbelief’ experienced by a woman whose baby had died. Midwives wrote about the ‘confusion’ and ‘uncertainty’ women had to face, which they said was a particularly distressing aspect of their role. Similarly, many midwives also found it challenging and ‘emotionally draining’ to deal with their own ‘shock’ and ‘confusion’ at having to provide perinatal loss care. Like the women they cared for, many participants stated that it was ‘hard to accept’ the loss and at times they felt ‘uncomfortable’ in providing perinatal loss care. Midwives described how providing perinatal loss care had the potential to become ‘all consuming and exhausting’, and was often something that they then felt had to be ‘lived with’. Interestingly, a couple of midwives also articulated that while providing perinatal loss care was emotional challenging, the physical or clinical component was ‘minimal’. Feeling unsure The data within this sub-theme reflected participant’s lack of confidence and ‘hesitation’ with providing certain aspects of perinatal loss care. Here, midwives talked about ‘not knowing’ the best course of action and about being ‘unsure’ as to the standard of their care. ‘Not having the words to help’ was also common to the data set, and reflected some midwives’ own feelings of inadequacy as well as the challenge they experienced in trying to help women and their families cope with the grief. Participants wrote about having ‘no words’ and/or ‘not having the right words’ as well as being ‘unsure of what to say’. Some also worried about ‘saying the wrong thing’. One midwife commented that she felt it never got any ‘easier to know what to say’. A second aspect of this sub-theme was related to ‘knowing why’ the baby had died. Some participants wrote about how families ‘expected’ them to have an answer as to why the baby died. Midwives also mentioned feeling distressed at not being able to provide families with a ‘definite’ answer or reason as to ‘why’ the baby had died. As a consequence midwives described feeling challenged by feeling of ‘helplessness’ and ‘frustration’.
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Being unsupported: contextual issues Not surprisingly, when the hospital system could not adequately support midwives providing perinatal loss care, there was dissatisfaction. Although continuity of carer was particularly positive theme, when midwives were unable to accompany the women and their family through their experience, they expressed some dissatisfaction with providing care. For the midwives in this study, lack of continuity of care was most often the result of staffing constraints, busy wards and/or working in a particular clinical area that did not facilitate following the woman through the experience. For example one midwife stated that she worked in the antenatal clinic and was not afforded the opportunity to go with the family, despite believing she had the competence to do so. Several midwives also commented that they would have liked the opportunity ‘to see’ the woman they had cared for during labour and birth in the ‘perinatal loss follow-up’ clinic that the hospital offered. One of these midwives commented that she felt this would afford her ‘closure’ as well. Limited emotional support from colleagues and the hospital system was also noted as one of the least satisfying aspects of providing perinatal loss care. While midwives enjoyed the role of primary carer there was a sense that at times this could be a lonely journey, with them ‘struggling’ to come to terms with their own feelings and emotions, and finding it could be ‘difficult at times as we work independently and it can be difficult to find professional support/ debriefing. . . there is no other midwife to have a cup of tea with at the time’. The majority of comments around this issue reflected midwives desire for a greater level of psychological support and education, to prepare them to ‘cope’ with providing perinatal loss care. The sheer numbers of women with a perinatal loss was also mentioned by four midwives. This is not surprising given that the hospital is the only tertiary referral centre in the state. Having to so frequently provide perinatal loss care was considered ‘mentally exhausting’. A small number of comments also related to the distress caused when team members did not adequately communicate with one another. These comments were more likely to come from staff that worked on the gynaecological ward where women with pregnancy losses less than 20 weeks were cared for. Finally a number of comments were made about the volume of ‘paper work’ midwives had to complete when providing perinatal loss care. Midwives wrote about the ‘increasing requirements’, ‘duplication’ and ‘confusion’ of paperwork that caused frustration, and was one of the least satisfying aspects of care provision.
Discussion The midwife is often considered to be at the forefront of providing perinatal loss care, and to be in the best position to support families after the death of a baby.29,14,3,30 However, there remains limited work describing how midwives themselves perceive their role and responsibilities. Although generalisation of the findings are limited by the qualitative nature of the study, and the fact that the midwife participants were drawn from only one maternity setting within WA, the study does make a contribution to the Australian body of knowledge around midwifery care and perinatal loss.
J. Fenwick et al.
Facilitating the relationship between mother/ family and midwife Continuity of midwifery care was considered by the midwives to be a conduit for providing quality perinatal loss care, as it facilitates and enhances the mother—midwife relationship. Positive relationships with women and their families were perceived to be essential, as they provide both the context and method by which care is delivered. Moulder,13 and the earlier work of Forrest et al.,31 supports the assertion that it is the nature of the relationship with midwives and the equality felt by the woman, rather than specific perinatal loss care components, that is most important and beneficial to women. In the current study, the data clearly demonstrates that the West Australian midwives gained satisfaction from being the primary care provider. Within this model, midwives felt able to utilise their knowledge and skills to make a ‘difference’. As a result, midwives expressed a sense of satisfaction with their employer for the role they played in supporting and resourcing the continuity of midwifery care model. Ironically, it is women who have a dead baby that are more likely to receive one-to-one midwifery care than those women presenting with a live baby within the WA study setting. It is not only midwives’ dissatisfaction that is associated with not being afforded the opportunity to provide continuity of care; evidence also suggests that fragmented care has the potential to contribute to women’s own dissatisfaction, and to reinforce a sense of disconnection from their health care professional.32—34
Components of perinatal loss care The findings of the study demonstrated that the midwives in this study took a holistic approach to care and gained satisfaction from working with parents’ to meet their needs. It was evident that midwives placed great emphasis on individualising care, by respecting families and building open and trusting relationships. These two aspects of care have repeatedly featured in the literature exploring parents’ satisfaction with hospital care.35—39 Similarly, the analysis presented in this paper supports the notion that midwives appreciate that women want compassion, encouragement and empathy.34 In addition, helping women deal with their intense feelings, and to cope with grief, was clearly evident and well described in the data.38—42 The research also provides evidence that many of the care components cited in the literature do inform the basis of midwifery clinical practice in WA. For example the analysis confirms that midwives consider ‘tokens of remembrance’ as integral to the process of creating positive memories for families experiencing perinatal loss.3,21,35 Helping families celebrate their baby’s birth by collecting mementoes such as photos, foot prints, hand prints and a lock of hair appears to be a concept that is well accepted by midwives in this study. In addition midwives expressed satisfaction with facilitating parents ‘time with’ the baby which included seeing, bathing, holding and naming the baby. As the literature of the 1990s suggests,3,43,44 midwives considered these to be positive interventions that were beneficial to women working through their grief.
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Providing perinatal loss care The finding of this study are difficult to interpret in light of Hughes et al.7 recent work. Although midwives considered facilitating parents to see and hold their dead baby as beneficial there was no data from participants suggesting that they specifically respected the women’s right not to see or hold their stillborn. This is a phenomenon that has previously been identified in the neonatal nursery. Lundquist and Nilstun45 explored 144 neonatal nurses’ experiences of parents who were reluctant and/or refused to touch or hold their dead baby. They concluded that the participants considered such behaviour to be problematic as they believed that it would alleviate future suffering. Ra ˚destad5 on the issue of coercion versus encouragement, suggested that while there were a small number of women who reported feeling ‘forced’ to hold their baby, over one third of participants stated that staff should have more actively encouraged them to ‘meet’ their dead babies. Further investigation needs to target midwives views and responses to women who do not see and/or hold there baby. Having said this, however, there was a strong emphasis on ensuring care was individualised to the woman’s and families needs and no indication in the data that woman’s refusal to engage in these activities resulted in some level of dissatisfaction with providing care. While the findings are limited given the absence of the woman’s perspective the qualitative findings of a mixed methods study by Jennings,8 under taken in the same institution, revealed that women were extremely positive about the midwifery care they received following perinatal loss. Although the analysis demonstrates that many midwives felt confident and gained satisfaction from providing perinatal loss care to women and families, there was also evidence that some midwives struggled with knowing ‘just what to say’. This was a strong negative theme for midwives and was accompanied by statements intimating just how emotionally overwhelming providing perinatal loss care could be. For these midwives, knowing what and how much information to give women was a constant source of uncertainty, and a clinical challenge. For women information sharing plays a significant role in their level of satisfaction.32,46,47 Even though KEMH has a dedicated perinatal loss coordinator, the findings suggest that midwives continue to need specific and ongoing education, skills and support to cope with the emotionally charged role of caring for women and families suffering perinatal loss. There was also a sense in the data that midwives found it clinically ‘easier’ to care for a woman with a dead baby. This is an interesting finding given that even when the fetus is dead the woman still needs to undertake the physiological process of labour and birth and is potentially at ‘increased risk’.48 This may be the result of not having to engage in the complex assessment of intrapartum fetal wellbeing, decision making and the weighing of risk and benefit that accompanies caring for a woman with a live infant. The consequence being a reduction in work related stress. This assumption is perhaps supported by recent work that has confirmed that some midwives specifically chose to care for a woman with a dead baby as a strategy to protect themselves from potential litigation.49 In this qualitative study of 16 midwives experiences of external obstetric scrutiny and the impact on practice, midwives believed they would not be sued because the baby was already dead or was known to be going to die, making the experience of providing care easier and less
stressful. While further research is needed we hypothesis that these findings highlight an apparent growing shift from ‘seeing’ and ‘assessing’ the ‘whole’ woman and her baby to one where fetal wellbeing and obtaining a readable, electronically auscultated fetal heart rate recording often become the priority and the only focus of care.
Conclusion This small study again highlights the importance and benefits of providing women with continuity of midwifery care. Continuity of carer was recognised as the preferred model of midwifery care for women experiencing the death of their baby; however it is clear that support for midwives both in personal and resource terms is an imperative if this is to be successful. The opportunity to create positive and special memories was considered to be an essential component of care that contributes significantly to a positive childbearing experience, even in sad and unexpected circumstances. Providing sensitive, supportive care was seen by midwives as a source of great professional satisfaction. Listening to women and being with them during this emotionally challenging time is both an experience which elicits fulfilment in the midwifery role, as well as one which is personally confronting. The question remains, however, as to why operationalising this model of care for all women, regardless of the level of medical care required, remains such a challenge within the Australian maternity care system.
Acknowledgments The authors would like to acknowledge the financial assistance provided by the Nurses Board of Western Australia. We also value the contribution of our research assistant, Keira Sarich and the anonymous reviewers who helped us strengthen the paper. We would like to acknowledge and thank the participants who generously gave their time to participate in this study.
References 1. Allott H. Picking up the pieces: the post-delivery stress clinic. Br J Midwifery 1996;4:534—7. 2. Hughes P. Psychological effects of stillbirth: a review. Psychological perspective on pregnancy and childbirth. London: Churchill Livingstone; 2002. 3. Ra ˚destad I, Nordin C, Steineck G, Sjo ¨gren B. Psychological complications after stillbirth-influence of memories and immediate management: population based study. BMJ 1996;312:1505— 7. 4. Moulder C. Late pregnancy loss: issues in hospital care. Br J Midwifery 1999;7:244—7. 5. Ra ˚destad I. Stillbirth: care and long-term psychological effects. Br J Midwifery 2001;9:474—9. 6. Boyce P, Condon JT, Ellwood DA. Pregnancy loss: a major life event affecting emotional health and wellbeing. Med J Aust 2002;176:250—1. 7. Hughes P, Turton P, Hopper E, Evance CDH. Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: a cohort study. Lancet 2002;360:114—8. 8. Jennings B. An evaluation of midwifery managed care provided to women experiencing perinatal death. Masters by thesis. Curtin University of Technology, unpublished manuscript; 2006.
160 9. Davis DL, Stewart M, Harmon RJ. Perinatal loss: providing emotional support for bereaved parents. Birth 1988;15:242—7. 10. Wallerstedt C, Higgins P. Facilitating perinatal grieving between the mother and the father. JOGNN 1996;25:289—94. 11. Kohner N. When a baby dies: parent’s stories. MIDIRS 2001;11:243—6. 12. Rowe J, Clyman R, Green C, Mickelson J, Haight A, Ataide M. Follow-up of families who experience a perinatal death. Pediatrics 1978;62:166—9. 13. Moulder C. Understanding pregnancy loss. Perspectives and issues in care. Sydney: McMillian; 1998. 14. Warland J. The midwife and the bereaved family. Melbourne: Ausmed Publications; 2000. 15. Ujda R, Bendiksen R. Health care provider support and grief after perinatal loss: a qualitative study. Illness Crisis Loss 2000;8: 265—70. 16. Murray J, Callan V. Predicting adjustment to perinatal death. Br J Med Psychol 1988;61:237—305. 17. Boyle FM, Vance JC, Najman JM, Thearle MJ. Estimating non participation bias in a longitudinal study of bereavement. Aust N Z J Pub Health 1996;20:483—7. 18. Campinha-Bacote J, Yahle T, Langenkamp M. The challenge of cultural diversity for nurse educators. J Contin Educ Nurs 1996;27:59—64. 19. Leininger M. Overview of the theory of cultural care with ethnonursing research method. J Transcult Nurs 1997;8:32—52. 20. Chambers HM, Chan FY. Support for women/families after perinatal death [cochrane review]. The cochrane library, issue 2. Oxford: Update Software; 1998. 21. Mander R, Marshall RK. An historical analysis of the role of paintings and photographs in comforting bereaved parents. Midwifery 2003;19:230—42. 22. Gardner JM. Perinatal death: uncovering the needs of midwives and nurses and exploring helpful interventions in the United States, England, and Japan. J Transcult Nurs 1999;10:120—30. 23. Fenwick J, Downie J, Okanage M, Jennings B, Butt J. Midwives perception of care in Australia and Japan following perinatal loss. Unpublished manuscript. Curtin University of Technology; 2007. 24. Fenwick J, Downie J, Jenning B, Okanage M, Butt J. Developing and testing the midwifery components of perinatal loss care: frequency scale. Unpublished manuscript. Curtin University of Technology; 2007. 25. Polit DF, Beck CT. Essential of nursing research. Methods, appraisal, and utilization. Sydney: Lippincott Williams & Wilkins; 2006. 26. Weiss C. Evaluation. New Jersey: Prentice-Hall Inc.; 1998. 27. Schneider Z. An Australian study of women’s experiences of their first pregnancy. Midwifery 2002;18:238—49. 28. Streubert S, Speziale DR, Carpenter D. Qualitative research in nursing. Advancing in humanistic perspective. 3rd ed. Philadelphia: Lippincott; 2003.
J. Fenwick et al. 29. Saylor D. Nursing response to mothers of stillborn infants. J Obstet Gynaecol Neonat Nurs 1977;9:47—51. 30. Hughes P, Tuton P, Hopper E, McGauley G, Gonagy P. Disorganised attachment behaviour among infants born subsequent to stillbirth. J Child Psychol Psychiatry 2001;42:791—801. 31. Forrest GC, Standish E, Baum JD. Support after perinatal death: a study of support and counselling after perinatal bereavement. BMJ 1982;285:1475—9. 32. Crowther ME. Communication following a stillbirth or neonatal death: room for improvement. Br J Obstet Gynaecol 1995;102: 952—6. 33. Ra ˚destad I, Nordin C, Steineck G, Sjo ¨gren B. A comparison of women’s memories of care during pregnancy, labour and delivery after stillbirth or live birth. Midwifery 1998;14:112—7. 34. Lundquist A, Nilstun T, Dykes AK. Both empowered and powerless: mothers’ experiences of professional care when their newborn dies. Birth 2002;29:192—9. 35. Gohlish MC. Stillbirth. Midwife Health Visit Commun Nurs 1985;21:16—22. 36. Calhoun LK. Parents’ perceptions of nursing support following neonatal loss. J Perinat Neonatal Nurs 1994;8:57—66. 37. Harper MB, Wisian NB. Care of bereaved parents. a study of patient satisfaction. J Reprod Med 1994;39:80—6. 38. Dyson L, While A. The ‘long shadow’ of perinatal bereavement. Br J Commun Nurs 1998;3:432—9. 39. Caelli K, Downie J, Letendre A. Parent’s experiences of midwifemanaged care following the loss of a baby in a previous pregnancy. J Adv Nurs 2002;39:127—36. 40. Kavanaugh K. Parents’ experience surrounding the death of a newborn whose birth is at the margin of viability. JOGNN 1995;26:43—51. 41. Co ˆte ´-Arsenault. Morrison-Beedy D. Women’s voices reflecting changed expectation for pregnancy after perinatal loss. J Perinat Neonatal Nurs 2001;33:239—44. 42. Uren TH, Wastell CA. Attachment and meaning-making in perinatal bereavement. Death Stud 2002;26:279—308. 43. Nicol M. Loss of a baby: understanding maternal grief. Sydney: Bantam Books; 1989. 44. Malacrida C. Perinatal death: helping parents find their way. J Fam Nurs 1997;3:130—48. 45. Lundquist A, Nilstun R. Neonatal death and parents’ grief. Scand J Caring Sci 1998;12:246—50. 46. Harper MB, Wisian NB. Care of bereaved parents. A study of patient satisfaction. J Reprod Med 1994;39:80—6. 47. Lasker J, Toedter LJ. Satisfaction with hospital care and interventions after pregnancy loss. Death Stud 1994;18:41—64. 48. Flenady V. Perinatal mortality clinical audit and guidelines. Perinatal Society of Australia and New Zealand (PSANZ); 2005. 49. Hood L. A story of scrutiny, a story of fear: midwives experiences of an external review of obstetric services at KEMH, WA. Unpublished master thesis. Perth (WA): Curtin University of Technology; 2007.
a v a i l a b l e a t w w w. s c i e n c e d i r e c t . c o m
journal homepage: www.elsevier.com/locate/wombi
Providing perinatal loss care: Satisfying and dissatisfying aspects for midwives Jennifer Fenwick a,b,*, Belinda Jennings b, Jill Downie c, Janice Butt a,b, Mayumi Okanaga c a
Curtin University Technology & King Edward Memorial Hospital, School of Nursing and Midwifery, Curtin University of Technology, GPO Box U1987, Perth, WA 6845, Australia b King Edward Memorial Hospital, Perth, WA, Australia c Maternal Health Care Nursing, Kobe City College of Nursing, Kobe, Hyogo, Japan Received 16 July 2007; received in revised form 12 September 2007; accepted 17 September 2007
KEYWORDS Perinatal loss; Midwives; Continuity of carer; Maternity care; Components of care; Grief
Summary Purpose: There is limited midwifery research that focuses on midwives experiences and attitudes to providing care for women who experience the death of a baby. There is also limited research investigating care components, and evidence to inform the basis of clinical practice in Australia and internationally. This paper presents the qualitative findings of a small study that aimed to investigate midwives experience, confidence and satisfaction with providing care for women who experienced perinatal loss. Procedure: Eighty-three Western Australian midwives responded to an open ended question asking them to describe the most and least satisfying aspects of their role when providing care to women who experienced a perinatal loss. Thematic analysis was used to analyse the data. Findings: The analysis revealed that Australian midwives gained most satisfaction from providing skilled midwifery care that they considered made a difference to women. This was enabled when midwives were afforded the opportunity to provide continuity of midwifery carer to women throughout the labour, birth and early postnatal period. In terms of the least satisfying aspects of care, midwives identified that they struggled with the emotional commitment needed to provide perinatal loss care, as well as with how to communicate openly and share information with women. Conclusions and implications for practice: Within the context of the study setting, midwifery care for women following perinatal loss reflects the care components espoused in the literature. There are, however, organisational issues within health care that require commitment to continuity of care and further education of practitioners to enhance outcomes for clients. # 2007 Australian College of Midwives. Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd). All rights reserved.
* Corresponding author. Tel.: +61 8 9266 2056/9340 1672; fax: +61 8 9266 2959. E-mail addresses: [email protected] (J. Fenwick), [email protected] (M. Okanaga). 1871-5192/$ — see front matter # 2007 Australian College of Midwives. Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd). All rights reserved.
doi:10.1016/j.wombi.2007.09.002
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Introduction The role of the midwife is to support women through the significant and normal life event of pregnancy, birth and early parenting. Unfortunately this journey does not always result in the birth of a live baby. ‘Being with’ women and their families as they experience perinatal loss requires midwives to be open to the pain, complexity and uniqueness of grief. Caring for bereaved families can cause distress and discomfort which may be both personally and professionally challenging for the midwife. Research into the perinatal loss experience has largely been undertaken within the discipline of psychology. Early work has relied heavily on psychometric assessment with much of this research centred on testing various components of care (interventions such as holding the baby, naming the baby, taking photos) provided by midwives and other health care professionals.1 Hughes2 credited the enormous change in practice that has occurred over the last 25 years to this initial clinical interest in the perinatal loss experience. As a result, there has been an increase in literature that has advocated open recognition of parents distress, contact with the baby, including seeing and holding the baby, and the creation of mementos such as photographs and footprints. While all of these are believed to facilitate the mourning process,3—6 more recent work by Hughes et al.7 questioned whether ‘all’ components of perinatal loss care are psychologically helpful to ‘all’ women ‘all’ of the time. In a matched case control study that enrolled 65 women experiencing stillbirth, the researchers reported that ‘seeing and holding’ the baby was associated with higher levels of grief than just ‘seeing’ the baby. Women who had held their stillborn infant were more depressed, had greater anxiety and higher symptoms of post-traumatic stress disorder (PTSD) than those who only saw the infant. The authors stressed the nature of adopting an individualised approach to care rather than an institutionalised one. Similarly, a recent Australian study revealed higher grief scores in women who spent more time with their baby compared to those spending less time.8 Research has also suggested that clinicians should be encouraged to focus on providing woman centred care; facilitating the grief process, acknowledging and validating the individual’s experience, and providing continuing community care.9—11 In addition, other authors12—15 have argued that midwives in particular have a unique role in supporting recently bereaved families, as they are the ones mostly likely to be involved in the experience with the family. Although there have been numerous studies on preparing nurses to support terminally ill patients and their families, and to a lesser extent on neonatal nurses perceptions of end of life care, there is limited literature describing midwives awareness, behaviour and attitudes towards perinatal loss care.8 The role and responsibilities of the midwife in meeting the needs of grieving parents has seldom been explored. There is also inadequate research investigating care components16,17 and evidence to inform the basis of clinical practice in Australia, internationally and across cultures.18—20 The literature shows that carers who are close to the experience, such as midwives and nurses, have a range of intimate experiences with bereaved women and families. Mander21 explored the stressors midwives associated with perinatal loss care and identified fours main factors; difficulty dealing
J. Fenwick et al. with grieving parents, lack of a happy outcome, mother’s anger, and limited resources. Later work by Gardner22 demonstrated commonality between midwives and nurses working in the United States, England and Japan, with many expressing that they lacked mentored experience, communication skills, knowledge and thus confidence and competence in providing sensitive care to families whose baby has died. As such there is a need to explore midwives perceptions of their role and responsibilities during the perinatal loss experience in order to further assist and improve care for women and their families.
Aim The qualitative findings presented in this paper form part of a larger study that aimed to identify midwifery care and midwives perceived competence in providing care following perinatal loss, and to compare midwifery care in this area of practice in Australia and Japan. The specific objectives of the larger study were: to compare midwives cognition of the care components provided in each country, and to explore midwives perception/self-assessment of their competence in providing care following perinatal loss.23 The third objective, which was to describe midwives’ perceptions of the most and least satisfying aspects of providing perinatal loss care to women, is reported in this paper.
Method The study was descriptive in nature and undertaken in two phases. Both quantitative and qualitative data collection techniques were employed. The first phase pilot-tested the newly developed Midwifery Components of Perinatal Loss Care: Frequency Scale (MCC) for clarity, internal consistency and content validity.24 In phase two, a questionnaire which encompasses the MCC, was administered to midwives working at a large maternity hospital in Western Australia (WA). At the end of the questionnaire, midwives were asked to describe the most and least satisfying aspects of providing care to women and their families who had experienced the death of a baby. It is the findings of this open-ended question that are the focus of this paper.
Setting and participants King Edward Memorial Hospital (KEMH) is WA’s only tertiary referral centre and conducts approximately 5500 births per year (one fifth of the state’s total). The hospital provides perinatal loss care to approximately 200 women and families per year and has a dedicated Perinatal Loss Service Outpatient Clinic. All women who have experienced a perinatal death at the tertiary obstetric hospital are offered follow-up at the outpatient clinic. On admission to the labour ward, women are allocated a midwife that provides continuity of care until discharge. Midwives and a small number of nurses employed at KEMH formed the study cohort. Of a potential 200 participants, 140 (70%) returned a questionnaire with 111 meeting the inclusion criteria of having cared for a woman and her family experiencing a perinatal loss on more than one occasion in the preceding 12 months. Nine participants were registered
155
Providing perinatal loss care Table 1 Demographics characteristics of the Western Australian participants
Initial nursing education Nursing hospital based qualification Nursing tertiary qualification Total Missing
Australian cohort (n = 140)
Recruitment and data collection
n
Non-probability convenience sampling was used to recruit midwives with the most experience in this area. Global emails, posters and in-service education sessions were used to inform potential participants about the study. Questionnaires, with attached envelopes and information sheets, were made readily available in all the ward areas. Midwives were asked to return completed questionnaires using the internal mail system. As no identifying data was collected, and the questionnaires were not coded, consent was implied. Of the 111 eligible respondents, 83 (75%) made 150 comments about the most satisfying aspects of providing perinatal loss care with 62 (55%) midwives making 67 comments about the least satisfying aspects of their work. Three midwives commented that there was nothing satisfying about providing care to families experiencing the death of a baby.
%
89
65.0
48 137 3
35.0 100
88
65.5
46
34.5
Initial midwifery education Midwifery hospital based qualification Tertiary midwifery qualification Total Missing
134 6
Postgraduate qualifications BA nursing a PG/nurse or midwifery Masters PhD Certified expert nurses Other
69 49 6 1 0 30
49.3 35.0 4.3 0.7 0 21.4
27 17 19 31 46 140 0
19.3 12.1 13.6 22.1 32.9 100
9 24 22 30 55 140
6.4 17.2 15.7 21.4 39.3 100
Length of time worked nurse Never Less than 3 years 3—5 years 6—15 years 16 years and greater Total Missing Length of time worked midwife Never Less than 3 years 3—5 years 6—15 years 16 years and greater Total Missing
nurses only. Please see Table 1 for detailed demographic information.
100
Employment status Full time Part time Casual Other Total Missing
67 65 7 1 140 0
47.9 46.4 5.0 0.7 100
Current position RN 1 RM/RN 1 RM/RN 2 Other Total Missing
5 63 65 7 140 0
8.1 45.0 46.4 5.0 100
a Some midwives had both a BA in nursing and another PG qualification.
Data analysis Thematic analysis was used to analyse the data. The process followed in this study resembles what Polit and Beck25 have termed template analysis. All written responses were transcribed into a computer document and formatted into a table. Common concepts were identified and clustered to form a coherent pattern of themes that captured the essence of the meaning of the responses.26—28 During data analysis meetings the identified clustered concepts were discussed, and the investigators then, by consensus, combined the related patterns into tentative themes. Audit trails were used to document the researchers reasoning, rationale and justification for decisions made and conclusions drawn.28 Please see Table 2 for an example of an audit trail.
Ethical considerations Ethical approval was granted by Curtin University of Technology Human Research Ethics Committee and King Edward Memorial Hospital Ethics Committee.
Findings: most satisfying aspects of perinatal loss care For the midwives in this study, satisfaction came from being able to ‘live’ the continuity of midwifery care model. Three major themes contributed to this overarching theme and were labelled: ‘Connecting with families’; ‘The ‘very best’: primary midwifery care; ‘Making a difference’. A fourth major theme, ‘Supportive environment’, referred to the context in which perintal loss services were organised and delivered at the hospital in which the midwives were employed.
Connecting with families Providing continuity of care was a common theme in the data and was seen as facilitating connection. The essential ele-
156 Table 2
J. Fenwick et al. Audit trail for the sub-theme ‘listening to the grief’
Raw data
Concepts Sub-theme
I feel I can offer a lot to these couples and that I know how to talk to them, thereby making a difference to how they cope afterwards (77). Being open and honest and talking openly about their baby instead of skirting around the subject (83). Open enough so clients feel they could approach and talk about anything (108). Building rapport by recognising her loss. . . listening to her grief (30). Encouraging parents to talk and express their feelings and just providing an ear/shoulder for them (83). Allow parents to talk and begin the grieving process (103). Privilege to assist families grieve (132). Understanding that people cope in very different ways and accepting that there is no right or wrong way just their own individual way (103). Respect everyone greaves in different ways (24). Helping them express their grief and loss (55). Share their sadness of their lost dreams (27). Being able to help the parents acceptance/grieving by being the primary carer (68). Being with families and offering support during their grief (87). Sharing the grief but being positive and supportive (125) Talking, open, honest, listening, expressing, crying with, sharing, offering, acknowledging and assisting grief, understanding unique process, respecting, honour life, supporting grief, sharing grief Listening to the grief
ments of continuity were described as having ‘lots of time’, ‘spending time’ and ‘devoting time’. The midwives’ perception was that having time allowed them to ‘be with’ and ‘connect to’ women which ultimately enhanced relationships. Establishing ‘rapport’, ‘friendships’ and ‘close and emotional bonds’ with families was considered an important part of perinatal loss care and was therefore essential in providing satisfying quality care. As one midwife said, ‘The most satisfying (aspect of care) is the relationship I develop with the woman and the family’. Continuity of midwifery carer was also considered important in facilitating family focused care across the hospital stay. Midwives described ‘connecting’ and ‘following families through’ as a source of great satisfaction. The midwives articulated how continuity of carer allowed them to meet the individual needs of women and their partners and/or families, by ‘coordinating’ all the services that the family may need during their admission.
The ‘very best’: primary midwifery care As a result of the continuity of care midwives described how satisfying it was to be the primary carer; providing what they considered was the ‘very best care’ midwives had to offer. Midwives perceived that working with families experiencing a perinatal loss in this way meant they could practice to the full extent of their skills and qualification. Satisfaction, as one midwife said, came from providing ‘excellent midwifery care’. The components of this midwifery led perinatal loss care were identified as; sensitive supportive care, being flexible, responding to individual needs, facilitating understanding, creating special memories, and listening to and sharing the grief. Sensitive supportive care Compassion, support, sensitivity, empathy, kindness, and reassurance were some of the words midwives used to describe providing sensitive, supportive, physical and emotional care. Midwives wrote about the importance of ‘respecting’ parents and making sure that care was delivered in a sensitive way, in a ‘private’ environment. Midwives considered this to be very important in providing them with
a sense of purpose, achievement and satisfaction. As one midwife said, ‘it’s rewarding knowing you have supported them through and hopefully made a traumatic time easier’. Being flexible: responding to individual needs Midwives commented that they liked providing ‘responsive’ sensitive care that was ‘flexible’, ‘adaptive’ and ‘accommodating’. Meeting and responding to all parents ‘requests’ within a ‘safe’ and ‘private’ environment was important to midwives. For example, when describing satisfaction, one midwife wrote ‘responding individually to family needs’. An important component of this sub-theme was to ensure families had ‘input’ and were involved in decisions made about their care. While midwives recognised that women and partners were often in a state of shock they also acknowledged that it was important for them to be active participants in what was happening around them. Facilitating understanding Helping women, partners and families understand what was happening to them after the death of their baby, and what was likely to happen over the coming days was an important aspect of providing perinatal loss care. Midwives considered sharing information and knowledge with families a way of relieving anxiety and assisting women to ‘gain control’. Creating special memories Facilitating an environment in which ‘special’ and ‘positive’ memories could be created was a strong theme in data. Midwives talked about the ‘precious’ moments couples could have with their baby and how this was achieved by encouraging, supporting and helping parents to feel comfortable holding, bathing, wrapping, and taking photos and foot prints of their baby. As one midwife said, satisfaction came from, ‘encouraging families to spend time with their baby and offering suggestions to enable them to create memories’. Midwives also wrote about acknowledging the baby as ‘real’ through such activities as naming the baby and saying goodbye as parents. Listening to, and sharing the grief Being actively involved in helping women deal with the grief they were experiencing was considered a satisfying aspect of
157
Providing perinatal loss care care by many of the midwives. The midwives talked about the ‘uniqueness’ of such an experience, and about how every woman dealt with grief in different ways. For example one midwife commented, ‘understanding that people cope in different ways and accepting that there is no right or wrong way — just their own individual way’. A second midwife wrote that she gained satisfaction from ‘giving parents freedom to grieve in their own way’. Being open and honest with women about what was happening to them and around them was important to midwives. Midwives gained a sense of achievement and satisfaction from knowing they had the ability to, ‘talk openly about the baby instead of skirting around the subject’. This was considered a way of helping parents feel comfortable to ask questions and to be able to ‘talk about anything’, with an aim to help them express their feelings. Comments such as, ‘allow parents to talk and begin the grieving process’ care common in the data set. As one midwife summarised, ‘recognising her loss and listening to her grief’ foster this aim. Midwives also described the satisfaction gained from feeling ‘privileged’ to be part of such a unique life/death journey. The midwives talked about the individual ‘uniqueness’ of such an experience and how every woman and her family dealt with it in different ways. For example one midwife commented, ‘understanding that people cope in different ways and accepting that there is no right or wrong way just their own individual way’. A second midwife said she gained satisfaction from ‘giving parents freedom to grieve in their own way’. Being able to ‘share’ this experience was viewed as an important and positive way to ‘honour’ and ‘respect’ the baby’s life and existence.
Making a positive difference The analysis revealed that for a large majority of the midwives in this study, satisfaction was a consequence of knowing that they had ‘helped’ and ‘made a difference’ to the woman and her family. Midwives described how they worked hard to provide care that, despite the tragic nature of the circumstances, was considered by clients to be positive. Perhaps the following two comments best capture this; ‘Helping parents feel positive about the experience even though a loss has occurred’ and ‘Make just a small difference to how they remember the event years later’. Midwives also gained satisfaction through ‘knowing’ women and families were ‘thankful’ and ‘grateful’ for the care received. Receiving positive ‘feedback’ was important and provided midwives with a sense of achievement. For example one midwife wrote ‘when parents thank you for your care even though they are totally devastated by their loss’.
Supportive environment Midwives satisfaction was related to the organisational context or environment in which the care was delivered. Many of the midwives described how important it was for the hospital to ‘acknowledge loss and grieving’. The midwives comments made it clear that being supported by the hospital to provide continuity of midwifery care, within an integrated system that allowed them to manage and coordinate total care across a range of service providers, was not only satisfying but extremely comforting as well. As one midwife said, ‘the
sheer quantity and quality of our resources is comforting for them (women) and me as a carer’.
Findings: least satisfying aspect of perinatal loss care Sixty-two midwives made comments about what they considered to be the least satisfying aspects of providing perinatal loss care. The analysis revealed two main themes. The first related to ‘personally challenging experiences’ and contained the sub-themes ‘emotional commitment’ and ‘feeling unsure’. The second was a contextual issue which reflected dissatisfaction with, and issues surrounding, being unable and/or unsupported to provide continuity of care.
Personally challenging experiences Being emotional overwhelmed This sub-theme clustered the comments that reflected midwives perceptions of how ‘emotionally draining’ providing perinatal loss care to women could be. Midwives described how difficult and stressful it was to ‘witness’ the ‘trauma’ ‘shock’ and ‘disbelief’ experienced by a woman whose baby had died. Midwives wrote about the ‘confusion’ and ‘uncertainty’ women had to face, which they said was a particularly distressing aspect of their role. Similarly, many midwives also found it challenging and ‘emotionally draining’ to deal with their own ‘shock’ and ‘confusion’ at having to provide perinatal loss care. Like the women they cared for, many participants stated that it was ‘hard to accept’ the loss and at times they felt ‘uncomfortable’ in providing perinatal loss care. Midwives described how providing perinatal loss care had the potential to become ‘all consuming and exhausting’, and was often something that they then felt had to be ‘lived with’. Interestingly, a couple of midwives also articulated that while providing perinatal loss care was emotional challenging, the physical or clinical component was ‘minimal’. Feeling unsure The data within this sub-theme reflected participant’s lack of confidence and ‘hesitation’ with providing certain aspects of perinatal loss care. Here, midwives talked about ‘not knowing’ the best course of action and about being ‘unsure’ as to the standard of their care. ‘Not having the words to help’ was also common to the data set, and reflected some midwives’ own feelings of inadequacy as well as the challenge they experienced in trying to help women and their families cope with the grief. Participants wrote about having ‘no words’ and/or ‘not having the right words’ as well as being ‘unsure of what to say’. Some also worried about ‘saying the wrong thing’. One midwife commented that she felt it never got any ‘easier to know what to say’. A second aspect of this sub-theme was related to ‘knowing why’ the baby had died. Some participants wrote about how families ‘expected’ them to have an answer as to why the baby died. Midwives also mentioned feeling distressed at not being able to provide families with a ‘definite’ answer or reason as to ‘why’ the baby had died. As a consequence midwives described feeling challenged by feeling of ‘helplessness’ and ‘frustration’.
158
Being unsupported: contextual issues Not surprisingly, when the hospital system could not adequately support midwives providing perinatal loss care, there was dissatisfaction. Although continuity of carer was particularly positive theme, when midwives were unable to accompany the women and their family through their experience, they expressed some dissatisfaction with providing care. For the midwives in this study, lack of continuity of care was most often the result of staffing constraints, busy wards and/or working in a particular clinical area that did not facilitate following the woman through the experience. For example one midwife stated that she worked in the antenatal clinic and was not afforded the opportunity to go with the family, despite believing she had the competence to do so. Several midwives also commented that they would have liked the opportunity ‘to see’ the woman they had cared for during labour and birth in the ‘perinatal loss follow-up’ clinic that the hospital offered. One of these midwives commented that she felt this would afford her ‘closure’ as well. Limited emotional support from colleagues and the hospital system was also noted as one of the least satisfying aspects of providing perinatal loss care. While midwives enjoyed the role of primary carer there was a sense that at times this could be a lonely journey, with them ‘struggling’ to come to terms with their own feelings and emotions, and finding it could be ‘difficult at times as we work independently and it can be difficult to find professional support/ debriefing. . . there is no other midwife to have a cup of tea with at the time’. The majority of comments around this issue reflected midwives desire for a greater level of psychological support and education, to prepare them to ‘cope’ with providing perinatal loss care. The sheer numbers of women with a perinatal loss was also mentioned by four midwives. This is not surprising given that the hospital is the only tertiary referral centre in the state. Having to so frequently provide perinatal loss care was considered ‘mentally exhausting’. A small number of comments also related to the distress caused when team members did not adequately communicate with one another. These comments were more likely to come from staff that worked on the gynaecological ward where women with pregnancy losses less than 20 weeks were cared for. Finally a number of comments were made about the volume of ‘paper work’ midwives had to complete when providing perinatal loss care. Midwives wrote about the ‘increasing requirements’, ‘duplication’ and ‘confusion’ of paperwork that caused frustration, and was one of the least satisfying aspects of care provision.
Discussion The midwife is often considered to be at the forefront of providing perinatal loss care, and to be in the best position to support families after the death of a baby.29,14,3,30 However, there remains limited work describing how midwives themselves perceive their role and responsibilities. Although generalisation of the findings are limited by the qualitative nature of the study, and the fact that the midwife participants were drawn from only one maternity setting within WA, the study does make a contribution to the Australian body of knowledge around midwifery care and perinatal loss.
J. Fenwick et al.
Facilitating the relationship between mother/ family and midwife Continuity of midwifery care was considered by the midwives to be a conduit for providing quality perinatal loss care, as it facilitates and enhances the mother—midwife relationship. Positive relationships with women and their families were perceived to be essential, as they provide both the context and method by which care is delivered. Moulder,13 and the earlier work of Forrest et al.,31 supports the assertion that it is the nature of the relationship with midwives and the equality felt by the woman, rather than specific perinatal loss care components, that is most important and beneficial to women. In the current study, the data clearly demonstrates that the West Australian midwives gained satisfaction from being the primary care provider. Within this model, midwives felt able to utilise their knowledge and skills to make a ‘difference’. As a result, midwives expressed a sense of satisfaction with their employer for the role they played in supporting and resourcing the continuity of midwifery care model. Ironically, it is women who have a dead baby that are more likely to receive one-to-one midwifery care than those women presenting with a live baby within the WA study setting. It is not only midwives’ dissatisfaction that is associated with not being afforded the opportunity to provide continuity of care; evidence also suggests that fragmented care has the potential to contribute to women’s own dissatisfaction, and to reinforce a sense of disconnection from their health care professional.32—34
Components of perinatal loss care The findings of the study demonstrated that the midwives in this study took a holistic approach to care and gained satisfaction from working with parents’ to meet their needs. It was evident that midwives placed great emphasis on individualising care, by respecting families and building open and trusting relationships. These two aspects of care have repeatedly featured in the literature exploring parents’ satisfaction with hospital care.35—39 Similarly, the analysis presented in this paper supports the notion that midwives appreciate that women want compassion, encouragement and empathy.34 In addition, helping women deal with their intense feelings, and to cope with grief, was clearly evident and well described in the data.38—42 The research also provides evidence that many of the care components cited in the literature do inform the basis of midwifery clinical practice in WA. For example the analysis confirms that midwives consider ‘tokens of remembrance’ as integral to the process of creating positive memories for families experiencing perinatal loss.3,21,35 Helping families celebrate their baby’s birth by collecting mementoes such as photos, foot prints, hand prints and a lock of hair appears to be a concept that is well accepted by midwives in this study. In addition midwives expressed satisfaction with facilitating parents ‘time with’ the baby which included seeing, bathing, holding and naming the baby. As the literature of the 1990s suggests,3,43,44 midwives considered these to be positive interventions that were beneficial to women working through their grief.
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Providing perinatal loss care The finding of this study are difficult to interpret in light of Hughes et al.7 recent work. Although midwives considered facilitating parents to see and hold their dead baby as beneficial there was no data from participants suggesting that they specifically respected the women’s right not to see or hold their stillborn. This is a phenomenon that has previously been identified in the neonatal nursery. Lundquist and Nilstun45 explored 144 neonatal nurses’ experiences of parents who were reluctant and/or refused to touch or hold their dead baby. They concluded that the participants considered such behaviour to be problematic as they believed that it would alleviate future suffering. Ra ˚destad5 on the issue of coercion versus encouragement, suggested that while there were a small number of women who reported feeling ‘forced’ to hold their baby, over one third of participants stated that staff should have more actively encouraged them to ‘meet’ their dead babies. Further investigation needs to target midwives views and responses to women who do not see and/or hold there baby. Having said this, however, there was a strong emphasis on ensuring care was individualised to the woman’s and families needs and no indication in the data that woman’s refusal to engage in these activities resulted in some level of dissatisfaction with providing care. While the findings are limited given the absence of the woman’s perspective the qualitative findings of a mixed methods study by Jennings,8 under taken in the same institution, revealed that women were extremely positive about the midwifery care they received following perinatal loss. Although the analysis demonstrates that many midwives felt confident and gained satisfaction from providing perinatal loss care to women and families, there was also evidence that some midwives struggled with knowing ‘just what to say’. This was a strong negative theme for midwives and was accompanied by statements intimating just how emotionally overwhelming providing perinatal loss care could be. For these midwives, knowing what and how much information to give women was a constant source of uncertainty, and a clinical challenge. For women information sharing plays a significant role in their level of satisfaction.32,46,47 Even though KEMH has a dedicated perinatal loss coordinator, the findings suggest that midwives continue to need specific and ongoing education, skills and support to cope with the emotionally charged role of caring for women and families suffering perinatal loss. There was also a sense in the data that midwives found it clinically ‘easier’ to care for a woman with a dead baby. This is an interesting finding given that even when the fetus is dead the woman still needs to undertake the physiological process of labour and birth and is potentially at ‘increased risk’.48 This may be the result of not having to engage in the complex assessment of intrapartum fetal wellbeing, decision making and the weighing of risk and benefit that accompanies caring for a woman with a live infant. The consequence being a reduction in work related stress. This assumption is perhaps supported by recent work that has confirmed that some midwives specifically chose to care for a woman with a dead baby as a strategy to protect themselves from potential litigation.49 In this qualitative study of 16 midwives experiences of external obstetric scrutiny and the impact on practice, midwives believed they would not be sued because the baby was already dead or was known to be going to die, making the experience of providing care easier and less
stressful. While further research is needed we hypothesis that these findings highlight an apparent growing shift from ‘seeing’ and ‘assessing’ the ‘whole’ woman and her baby to one where fetal wellbeing and obtaining a readable, electronically auscultated fetal heart rate recording often become the priority and the only focus of care.
Conclusion This small study again highlights the importance and benefits of providing women with continuity of midwifery care. Continuity of carer was recognised as the preferred model of midwifery care for women experiencing the death of their baby; however it is clear that support for midwives both in personal and resource terms is an imperative if this is to be successful. The opportunity to create positive and special memories was considered to be an essential component of care that contributes significantly to a positive childbearing experience, even in sad and unexpected circumstances. Providing sensitive, supportive care was seen by midwives as a source of great professional satisfaction. Listening to women and being with them during this emotionally challenging time is both an experience which elicits fulfilment in the midwifery role, as well as one which is personally confronting. The question remains, however, as to why operationalising this model of care for all women, regardless of the level of medical care required, remains such a challenge within the Australian maternity care system.
Acknowledgments The authors would like to acknowledge the financial assistance provided by the Nurses Board of Western Australia. We also value the contribution of our research assistant, Keira Sarich and the anonymous reviewers who helped us strengthen the paper. We would like to acknowledge and thank the participants who generously gave their time to participate in this study.
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