- Email: [email protected]
Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby
G Model WOMBI 982 No. of Pages 4
Women and Birth xxx (2019) xxx–xxx
Contents lists available at ScienceDirect
Women and Birth journal homepage: www.elsevier.com/locate/wombi
Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby Karin Henley Listermara , Taina Sormunenb , Ingela Rådestadb,* a b
Huddinge University Hospital, Huddinge, Sweden Sophiahemmet University, Stockholm, Sweden
A R T I C L E I N F O
A B S T R A C T
Article history: Received 8 February 2019 Received in revised form 26 May 2019 Accepted 26 May 2019 Available online xxx
Background: Usually, parents remain at the hospital for two or three days after a stillbirth in Sweden, and the routine until recently has been to place the baby in a refrigerator during the night. A device, the Cubitus Baby, a specially designed cot with cooling blocks, was implemented in all 47 delivery wards during 2013 and 2014. Aim: To investigate the midwives’ experiences of using the device when supporting parents after the stillbirth. Method: Questionnaires were completed by midwives, and a single open-ended question was analysed using content analysis. Findings: 154 midwives responded. Four categories were identified, with two subgroups in each category: Feelings of dignity (Satisfactory feelings in working with grief; Design and function), Caring cooling (The cooling function; A cold baby), Time for farewell (Time together; Time to make your own choice) and Satisfying feelings for the parents (The parents and Cubitus Baby; The possibility for bonding). Conclusions: The midwives found that this practice provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital. In modern perinatal palliative care, it is not justifiable to place a stillborn baby in a refrigerator. © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
Keywords: Stillbirth Perinatal Palliative care Cubitus baby
Statement of significance Problem or issue Standard practice often includes placing a stillborn baby in a refrigerator, in a cold-storage room, or transporting the baby to a cold room during the night, and even parts of the day, when the parents are in the hospital after a stillbirth. What is already known It is important for parents to spend time with their stillborn baby, to care for the baby and make memories before saying goodbye. Perinatal palliative care can be applied to the situation of stillbirth, including helping parents to meet and be together with their new-born but stillborn baby. Midwives are important in providing perinatal palliative care after a stillbirth. What this paper adds Using a device to keep the stillborn baby cold provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital.
* Corresponding author at: Sophiahemmet University, Box 5605, 114 86 Stockholm, Sweden. E-mail address: [email protected] (I. Rådestad).
1. Introduction In Swedish maternity wards it has been standard practice, until recently, to place a stillborn baby in a refrigerator, in a cold-storage room, or to transport the baby to a cold room during the night, and even parts of the day, when the parents are in the hospital. The rationale is to keep the body cold, to minimize deterioration and facilitate an eventual autopsy. If the parents wanted to be with the baby, a staff member brought the baby to the parents and then later returned the baby to the refrigerator or storage location, something that could happen several times during a day. In Sweden, there has been no tradition of using any cooling systems following postnatal death. The benefits of using the cooling system CuddleCot, an electrically powered mattress that can be put in a baby bed to cool the dead body, have been reported.1,2 The definition of perinatal palliative care is the care of babies diagnosed prenatally with life-limiting conditions, as well as the care of their parents.3 Perinatal palliative care can also be applied to the situation of stillbirth, including helping parents to meet and say farewell to their stillborn baby. Perinatal palliative care refers to the care that health-care providers can provide in helping the pregnant woman and father in making the transition to
https://doi.org/10.1016/j.wombi.2019.05.013 1871-5192/© 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
G Model WOMBI 982 No. of Pages 4
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K.H. Listermar et al. / Women and Birth xxx (2019) xxx–xxx
parenthood and, with time, have their farewell with the stillborn baby. Researchers4 report that perinatal palliative care is well suited as an approach to providing care for parents who have learned that their baby has died in the uterus. Perinatal palliative care can be given before the start of delivery, during the delivery and after the birth. If the child is stillborn, it is the parents who need palliative care.5 Working with women who are giving birth has some similarities to working with dying patients; both stages are a natural part of life. Van Hoover and Holt6 state that midwives are well suited to providing palliative care. O’Connell et al.7 found that parents of stillborns were satisfied with the care they had been given when their caregiver was a midwife with substantial experience of caring for stillborns. Parents appreciated it when the midwife talked directly to the baby and treated the baby with the same sensitivity, dignity and respect that would be given to a living baby; this helped the parents to draw closer to their own baby.8 Further, how the babies were presented to their mothers after a stillbirth had an impact on the mothers’ feelings when seeing and holding their baby.9 A study by Rådestad et al.10 found that mothers who were able to be with their stillborn baby for as long as they wished after the birth experienced less anxiety three to four years after the event. The importance of spending time together with the stillborn baby was also found in interviews with parents in a study conducted by Säflund et al.11 O’Connell et al.7 also found in their study how important it is for parents to spend time with their stillborn baby, to care for the baby and make memories before saying goodbye. Further, in some cultures, it is, for example, unacceptable to leave a stillborn baby alone in the time leading up to the funeral.12 In Sweden, about 450 children are stillborn after 22 completed weeks of gestation, corresponding to 3.6 stillbirths per 1000 births each year. The majority of these deaths occur in late pregnancy and before labor starts. With the goal to improve the dignity of the baby and the family, a device was invented by one of the authors (IR) and implemented at all 47 delivery wards in Sweden during 2013 and 2014 as a “non-profit” project. A donation from the Ruth and Richard Julins fund covered the entire cost of the production of the device as well as the travel costs for its implementation. Cubitus Baby is a specially designed cot with cooling blocks, which looks like a baby bed. It has high sides and a cover that can be completely closed or left partially open at the head of the cot. The bedding is white padded cloth. Coolant blocks are concealed in pockets under a white inner protective layer around the sides of the cot and they may also be placed in the cot’s cover. It is recommended that the coolant blocks are changed two to three times per day. 2. Aim The aim of the study was to investigate the midwives’ experiences of using the device, Cubitus Baby, when supporting parents after the stillbirth. 3. Method 3.1. Study design The implementation of Cubitus Baby took place over two consecutive years. By the end of 2014, all clinics that had been offered the device had accepted it and received a Cubitus Baby cot. One of the authors (IR) personally delivered the device to each maternity clinic and, during that visit, gave a lecture on how to support parents of a stillborn baby and how to use Cubitus Baby in their care practices. The majority of the clinics were medium-sized with about five to ten stillbirths per year; the largest clinics had about 20 stillbirths per year. In total, 285 questionnaires with prefranked envelopes, were distributed to the 47 birth clinics.
When the Cubitus Baby cot was delivered to the maternity wards, it was accompanied by a folder with instructions on how this device was to be used. The folder contained questionnaires that the midwives were encouraged to complete after each time they had used the device. Depending on the size of the maternity ward, there were between five and ten questionnaires in the folder, along with a postage-paid reply envelope. Questionnaires were completed after the midwives had used Cubitus Baby while caring for parents whose child was stillborn. The questionnaire simply asked the participants to report what they had experienced, with this sentence as a guide: “Here you can describe your own impressions of how Cubitus Baby functioned and how it affected the parents’ experience, having access to this aid.” In addition to this open-ended question, the midwife could indicate the length of time that Cubitus Baby had been used for each baby during the period in which care was given. All the completed questionnaires that had been returned to the research group by 1 January 2017 constituted the basis for this study. 3.2. Data processing The data were analysed by a midwife (KHL). To ensure trustworthiness, the analysis process and the resulting categories were discussed in seminars with all members of the research group. The condensed meaning units, drawn from the midwives’ questionnaires, were all identified with a unique number so that they could be compared with the original text back and forth. The analysis began by reading, several times, each of the texts that the midwives had written about their experiences of using the Cubitus baby device in caring for the parents. Then, meaningbearing units in the text were marked. A total of 261 meaningbearing units were identified, and these were then sorted into categories and entered into Excel. Next, the meaning-bearing units were condensed, the text in each category was reviewed again, and the texts were sorted into subcategories.13 The project was approved by an Ethical Review Board, Dnr 20170316/1318. 4. Findings A total of 154 questionnaires were returned to the research group, from 40 of the 47 maternity clinics, and the open-ended question was left unanswered in 44 questionnaires. Most often, the Cubitus Baby device was used in the hospital, and for between one and three days. The shortest duration of use was three hours (n = 3), and the longest was 11 days (n = 1). Three families took their baby home in the Cubitus Baby cot. The device was most often placed in the parents’ bed, and in a few cases, it was placed in another room that the parents could visit when they wished. The analysis of the open-ended question resulted in four categories with two subgroups in each category: (1) Feelings of dignity, with subgroups Satisfactory feelings in working with grief, and Design and function; (2) Caring cooling, with subgroups The cooling function, and A cold baby; (3) Time for farewell, with subgroups Time together, and Time to make your own choice; and (4) Satisfying feelings for the parents, with subgroups The parents and Cubitus baby, and The possibility for bonding. The numbers in parentheses after each quotation below indicates the questionnaire from which the quotation was taken. 4.1. Feelings of dignity Dignity was a word that was used often. Midwives felt that it was dignifying that the child could lie in the Cubitus Baby cot and that it was dignifying for the parents to be able to see their baby in that environment. Some midwives expressed their thanks, stating that the device had contributed to a promoting a good experience with this type of
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
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care. The midwives described the Cubitus baby cot as “soft”, “beautiful”, “tranquil”, “respectful” and “inviting”, and they noted that the design was “smooth” and “neutral”. The device felt pleasant to use and to show to the parents. They arranged the bedding and tried to make it cozy around the baby with blankets and the sheet. Depending on how large the child was, they tried to adapt the bedding so that the cot was appropriate, even for a very small child. The midwives expressed positive views about the simple cooling function. “A significantly much greater feeling of dignity in these situations.” (2) “An incredibly fine and good aid in a difficult situation.” (128) “Looks very cozy around the child!” (116) 4.2. Caring cooling The midwives reported that Cubitus Baby maintained the cooling well and that the cooling blocks remained cold for a long time. The cooling function performed well, even during warm summer days. The babies had remained in good condition longer than they had in the past, when the routine practice was to move them back and forth between the refrigerator and the parents’ room. One of the midwives reported that the sister of the stillborn baby had helped her change the cooling blocks, and some midwives viewed changing the cooling blocks as part of the care of the baby. The need to keep the stillborn baby cold had been previously experienced by the midwives as something stressful. They had to take the child from the parents and put the baby in the refrigerator or cold room. Several midwives said that it was nice not to have to move the child and disturb the parents, and also that the baby could remain lying in Cubitus Baby while the parents arranged the blankets and teddy bears. The baby maintained a low temperature even during midsummer. The freezer packs maintained the low temperature for a long period of time. (17) “Easy to change the freezer packs, but you do not need to make much of this, big sister helped with this.” (69) “Didn’t need to worry about having to put the child in a refrigerator (which otherwise can be a stress factor).” (84) 4.3. Time for farewell The midwives noted that it felt completely natural that the baby was able to be with its parents, just like any other newborn baby, without any interruptions caused by taking the baby to the cold room. Relatives came by to visit and the baby was there in a natural way the whole time. Some parents chose to take their baby home, and one couple put the Cubitus Baby cot in a baby carriage and took a walk with their child. The midwives said that the parents were grateful for the time they were given to be with the baby, and that they themselves could decide when it was time to have that final farewell. The midwives felt that it was good that the parents got the chance to bond with their stillborn baby in whatever way they chose. Some parents wanted to see their baby for a short while and then wanted the child to be placed in another room. Others wanted to have their baby with them during the day and then let the child be with the health-care staff during the night. In some cases, the parents had gone home and then had come back to the hospital to look at the baby again, who, during that time, had remained in the Cubitus baby cot. The parents said that it was comforting to know that the baby was still there while they returned home for a while. Several midwives noted that it was possible for the parents themselves to decide how close they wanted to be to their child. The midwives said that they felt it was good that the child could still be in the cot, even
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when the parents did not want the baby to be in the same room where they were staying. “Cubitus baby was a pre-requisite for the parents to have the baby at home right up to the funeral.” (12) “They felt that it was a positive experience for them, personally, to have the time needed to say farewell.” (20) “They had Cubitus baby in their own bed and could therefore have the child there even when they were resting/sleeping.” (36) 4.4. Satisfying feelings for the parents A number of midwives observed that the parents appreciated Cubitus Baby, even in the midst of their sorrow. Some parents had said to the midwives that the cot looked nice when the baby lay there tucked in. The midwives described Cubitus Baby as a resource for the parents and that it had contributed to a good experience for them. Some of the midwives noted that they experienced Cubitus Baby as helping the parents to become connected with the baby. The cot made it possible for them to be close to their child and to create a natural parent-child situation. The parents picked the baby up out of the bed themselves, put their own blankets and teddy bears in the bed, and took pictures of the child lying in Cubitus Baby. “They thought it felt nice with Cubitus Baby.” (41)
5. Discussion Giving parents uninterrupted time with their deceased child is a meaningful benefit of using the Cubitus Baby device. The midwives felt that they were able to provide a more dignified kind of care when they no longer needed to place the stillborn baby in a refrigerator. We found that the midwives were satisfied with not needing to separate the parents from their baby. The device could keep the body cold. Previously, the midwives would feel stressed by having to take the baby from the parents and place the stillborn baby in the cold room or put the stillborn baby in a refrigerator. In the study by Fenwick et al.,14 the midwives reported that it was important for them to be able experience feelings of satisfaction in the care of the stillborn when the opposite response left them feeling stressed and frustrated. The midwives in the present study reported that Cubitus Baby contributed to providing the parents with a satisfied experience in the midst of their sorrow. Fenwick et al.14 also found in their study that midwives were satisfied with their work when they could give the parents a positive experience despite the sorrowful situation. As a result of this new way of working, the midwives in the present study felt that a family who had lost a baby could become closer to their child at the pace at which they wanted, and that they were given the time they needed to say farewell to their baby. In a study of perinatal palliative care, midwives reported that it was rewarding to take care of parents and their stillborns.14 This gave them a feeling of satisfaction in being able to care for these families and in being given a chance to use their experience to be able to support the parents and make a difficult time less traumatic. The midwives created opportunities for the parents to be present and to care for their child.14 O’Connell et al.7 found in their study that the women found it very meaningful to spend time with their stillborn children and to take the time to create a memory. The family should be able to get help to create a quiet atmosphere in which they can say farewell in peace.10 In our study, the midwives said that they were able to provide more dignified care when they no longer needed to place the
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
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stillborn baby in a refrigerator. Munson and Leuthner3 note that one of the most important goals of perinatal palliative care is to enable the parents to feel like parents of a new-born baby, even if the baby is stillborn. Perinatal palliative care is a concept that has not yet taken hold in Sweden. Midwives, with their specialist knowledge, are the ones who are best suited to take primary responsibility for the perinatal palliative care that should be a matter of course in every maternity ward.15 Peters et al.8 state that midwives need specific training in caring for parents and the stillborn baby and it must also be made possible for them to be given support in facing their own feelings that may arise during the course of this work. That midwives need additional training in perinatal palliative care has been emphasized by Peacock et al.15 as well as by O’Connell et al.7 5.1. Methodological considerations Included in this study were midwives who had assisted at a stillbirth and who had used the Cubitus Baby device in caring for the parents after the stillbirth. We do not know to which extent the sample is representative of midwives who have used the device in the care of stillborns and their parents. Further, we lack information from seven clinics and made no efforts to try and encourage them to return the questionnaires. We do not know the exact numbers of midwives who would have had exposure to Cubitus Baby. Further, some of the 47 hospitals with delivery units were quite small and may not have had any stillbirth cases that were managed using Cubitus Baby. Also, we did not perform interviews with midwives who did not complete a questionnaire after they had used the device. The lack of negative comments about Cubitus Baby and of using this device to support parents of stillborns can be interpreted as lack of representativeness. The midwives who participated in the study may have been especially interested in this kind of care; they all had substantial experience in contrast with, for example, midwives who would have just finished their training and who might find this kind of care to be somewhat frightening, at least at first. This might possibly have been a factor in shaping the overwhelmingly positive attitude towards the Cubitus Baby device. 6. Conclusion There is no doubt that Cubitus Baby has drastically changed the conditions for parents of stillborn babies in Sweden and for the midwives caring for them. Parents do not need to be separated from their child and now have more time to spend together with their baby to say farewell. Our study also shows that midwives experienced improved working conditions and satisfaction with the work. The stories we have heard also indicate that Cubitus Baby facilitates parents in parenting their deceased child during the short time they have before their farewell. Funding The development of Cubitus Baby was funded by the Ruth and Richard Julins Fund, Swedish national Infant Fund and Sophiahemmet Funds.
Ethical statement The study is approved by Sophiahemmet University Ethical Review Board, Dnr 20170316/1318. Conflicts of interest The conflict of interest implied here has been clearly specified for inclusion in this publication, disclosing that the inventor receives a small royalty for each device sold (in the same proportion as are royalties in the book publishing industry). Disclosure Ingela Rådestad invented Cubitus baby. She has royalties from the company FONUS who produce and sell Cubitus baby after the tool was delivered (as a non-profit project) to all maternity wards. References 1. Flexmort.com [internet]. CuddleCot. Available from: http://flexmort.com/wpcontent/uploads/2012/12/CuddleCot-Manual-Sept-2017.pdf. 2. Brody JE. A device that gives parents of stillborn babies time to say goodbye. The New York Times Available from: https://www.nytimes.com/2019/01/14/well/ family/a-device-that-gives-parents-of-stillborn-babies-time-to-say-goodbye. html, Online January 14 3. Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin N Am 2007;54(5):787–98. doi:http://dx. doi.org/10.1016/j.pcl.2007.06.006. 4. Wool C, Côte’-Arsenault D, Perry Black B, Denney-Koelsch E, Kim S, Kavanaugh K. Provision of services in perinatal palliative care: a multicentre survey in the United States. J Palliat Med 2016;19(3):279–85. doi:http://dx.doi.org/10.1089/ jpm.2015.0266. 5. Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonat Nurs 2006;20(1):113–6. 6. Van Hoover C, Holt L. Midwifing the end of life: expanding the scope of modern midwifery practice to reclaim palliative care. J Midwifery Womens Health 2016;61(3):306–14. doi:http://dx.doi.org/10.1111/jmwh.12454. 7. O’Connell O, Meaney S, O’Donoghue K. Caring for parents at the time of stillbirth: how can we do better? Women and birth. J Aust Coll Midwives 2016;29(4):345–9. doi:http://dx.doi.org/10.1016/j.wombi.2016.01.003. 8. Peters MDJ, Lisy K, Riitano D, Jordan Z, Aromataris E. Caringfor families experiencing stillbirth: evidence-based guidance for maternity care providers. Women Birth 2015;28:272–8. doi:http://dx.doi.org/10.1016/j.wombi.2015.07.003. 9. Erlandsson K, Warland J, Cacciatore J, Rådestad I. Seeing and holding a stillborn baby: mothers’ feelings in relation to how their babies were presented to them after birth — findings from an online questionnaire. Midwifery 2013;29 (3):246–50. doi:http://dx.doi.org/10.1016/j.midw.2012.01. 10. Rådestad I, Steineck G, Nordin C, Sjögren B. Psychological complications after stillbirth-influences of memories and immediate management: population based study. Br Med J 1996;312(7045):1505–8. doi:http://dx.doi.org/10.1136/ bmj.312.7045.1505. 11. Säflund K, Sjögren B, Wredling R. The role of caregivers after a stillbirth: views and experiences of parents. Birth 2004;31(2):132–7. doi:http://dx.doi.org/ 10.1111/j.0730-7659.2004.00291.x. 12. Brown E, Dominica F. Around the time of death: Culture, religion and ritual. In: Goldman A, Hain R, Liben S, editors. Oxford textbook of palliative care for children. Oxford: University Press; 2012. p. 142–53. 13. Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health 2012;40:795–805. doi:http://dx.doi.org/10.1177/ 1403494812465030. 14. Fenwick J, Jennings B, Downie J, Butt J, Okanaga M. Providing perinatal loss care: satisfying and dissatisfying aspects for midwifes. Women Birth 2007;20:153–60. doi:http://dx.doi.org/10.1016/j.wombi.2007.09.002. 15. Peacock V, Price J, Nurse S. From pregnancy to palliative care: advancing professional midwifery practice. Practising Midwife 2015;18(10):18–25https:// www.ncbi.nlm.nih.gov/pubmed/26669048.
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
Women and Birth xxx (2019) xxx–xxx
Contents lists available at ScienceDirect
Women and Birth journal homepage: www.elsevier.com/locate/wombi
Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby Karin Henley Listermara , Taina Sormunenb , Ingela Rådestadb,* a b
Huddinge University Hospital, Huddinge, Sweden Sophiahemmet University, Stockholm, Sweden
A R T I C L E I N F O
A B S T R A C T
Article history: Received 8 February 2019 Received in revised form 26 May 2019 Accepted 26 May 2019 Available online xxx
Background: Usually, parents remain at the hospital for two or three days after a stillbirth in Sweden, and the routine until recently has been to place the baby in a refrigerator during the night. A device, the Cubitus Baby, a specially designed cot with cooling blocks, was implemented in all 47 delivery wards during 2013 and 2014. Aim: To investigate the midwives’ experiences of using the device when supporting parents after the stillbirth. Method: Questionnaires were completed by midwives, and a single open-ended question was analysed using content analysis. Findings: 154 midwives responded. Four categories were identified, with two subgroups in each category: Feelings of dignity (Satisfactory feelings in working with grief; Design and function), Caring cooling (The cooling function; A cold baby), Time for farewell (Time together; Time to make your own choice) and Satisfying feelings for the parents (The parents and Cubitus Baby; The possibility for bonding). Conclusions: The midwives found that this practice provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital. In modern perinatal palliative care, it is not justifiable to place a stillborn baby in a refrigerator. © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
Keywords: Stillbirth Perinatal Palliative care Cubitus baby
Statement of significance Problem or issue Standard practice often includes placing a stillborn baby in a refrigerator, in a cold-storage room, or transporting the baby to a cold room during the night, and even parts of the day, when the parents are in the hospital after a stillbirth. What is already known It is important for parents to spend time with their stillborn baby, to care for the baby and make memories before saying goodbye. Perinatal palliative care can be applied to the situation of stillbirth, including helping parents to meet and be together with their new-born but stillborn baby. Midwives are important in providing perinatal palliative care after a stillbirth. What this paper adds Using a device to keep the stillborn baby cold provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital.
* Corresponding author at: Sophiahemmet University, Box 5605, 114 86 Stockholm, Sweden. E-mail address: [email protected] (I. Rådestad).
1. Introduction In Swedish maternity wards it has been standard practice, until recently, to place a stillborn baby in a refrigerator, in a cold-storage room, or to transport the baby to a cold room during the night, and even parts of the day, when the parents are in the hospital. The rationale is to keep the body cold, to minimize deterioration and facilitate an eventual autopsy. If the parents wanted to be with the baby, a staff member brought the baby to the parents and then later returned the baby to the refrigerator or storage location, something that could happen several times during a day. In Sweden, there has been no tradition of using any cooling systems following postnatal death. The benefits of using the cooling system CuddleCot, an electrically powered mattress that can be put in a baby bed to cool the dead body, have been reported.1,2 The definition of perinatal palliative care is the care of babies diagnosed prenatally with life-limiting conditions, as well as the care of their parents.3 Perinatal palliative care can also be applied to the situation of stillbirth, including helping parents to meet and say farewell to their stillborn baby. Perinatal palliative care refers to the care that health-care providers can provide in helping the pregnant woman and father in making the transition to
https://doi.org/10.1016/j.wombi.2019.05.013 1871-5192/© 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
G Model WOMBI 982 No. of Pages 4
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parenthood and, with time, have their farewell with the stillborn baby. Researchers4 report that perinatal palliative care is well suited as an approach to providing care for parents who have learned that their baby has died in the uterus. Perinatal palliative care can be given before the start of delivery, during the delivery and after the birth. If the child is stillborn, it is the parents who need palliative care.5 Working with women who are giving birth has some similarities to working with dying patients; both stages are a natural part of life. Van Hoover and Holt6 state that midwives are well suited to providing palliative care. O’Connell et al.7 found that parents of stillborns were satisfied with the care they had been given when their caregiver was a midwife with substantial experience of caring for stillborns. Parents appreciated it when the midwife talked directly to the baby and treated the baby with the same sensitivity, dignity and respect that would be given to a living baby; this helped the parents to draw closer to their own baby.8 Further, how the babies were presented to their mothers after a stillbirth had an impact on the mothers’ feelings when seeing and holding their baby.9 A study by Rådestad et al.10 found that mothers who were able to be with their stillborn baby for as long as they wished after the birth experienced less anxiety three to four years after the event. The importance of spending time together with the stillborn baby was also found in interviews with parents in a study conducted by Säflund et al.11 O’Connell et al.7 also found in their study how important it is for parents to spend time with their stillborn baby, to care for the baby and make memories before saying goodbye. Further, in some cultures, it is, for example, unacceptable to leave a stillborn baby alone in the time leading up to the funeral.12 In Sweden, about 450 children are stillborn after 22 completed weeks of gestation, corresponding to 3.6 stillbirths per 1000 births each year. The majority of these deaths occur in late pregnancy and before labor starts. With the goal to improve the dignity of the baby and the family, a device was invented by one of the authors (IR) and implemented at all 47 delivery wards in Sweden during 2013 and 2014 as a “non-profit” project. A donation from the Ruth and Richard Julins fund covered the entire cost of the production of the device as well as the travel costs for its implementation. Cubitus Baby is a specially designed cot with cooling blocks, which looks like a baby bed. It has high sides and a cover that can be completely closed or left partially open at the head of the cot. The bedding is white padded cloth. Coolant blocks are concealed in pockets under a white inner protective layer around the sides of the cot and they may also be placed in the cot’s cover. It is recommended that the coolant blocks are changed two to three times per day. 2. Aim The aim of the study was to investigate the midwives’ experiences of using the device, Cubitus Baby, when supporting parents after the stillbirth. 3. Method 3.1. Study design The implementation of Cubitus Baby took place over two consecutive years. By the end of 2014, all clinics that had been offered the device had accepted it and received a Cubitus Baby cot. One of the authors (IR) personally delivered the device to each maternity clinic and, during that visit, gave a lecture on how to support parents of a stillborn baby and how to use Cubitus Baby in their care practices. The majority of the clinics were medium-sized with about five to ten stillbirths per year; the largest clinics had about 20 stillbirths per year. In total, 285 questionnaires with prefranked envelopes, were distributed to the 47 birth clinics.
When the Cubitus Baby cot was delivered to the maternity wards, it was accompanied by a folder with instructions on how this device was to be used. The folder contained questionnaires that the midwives were encouraged to complete after each time they had used the device. Depending on the size of the maternity ward, there were between five and ten questionnaires in the folder, along with a postage-paid reply envelope. Questionnaires were completed after the midwives had used Cubitus Baby while caring for parents whose child was stillborn. The questionnaire simply asked the participants to report what they had experienced, with this sentence as a guide: “Here you can describe your own impressions of how Cubitus Baby functioned and how it affected the parents’ experience, having access to this aid.” In addition to this open-ended question, the midwife could indicate the length of time that Cubitus Baby had been used for each baby during the period in which care was given. All the completed questionnaires that had been returned to the research group by 1 January 2017 constituted the basis for this study. 3.2. Data processing The data were analysed by a midwife (KHL). To ensure trustworthiness, the analysis process and the resulting categories were discussed in seminars with all members of the research group. The condensed meaning units, drawn from the midwives’ questionnaires, were all identified with a unique number so that they could be compared with the original text back and forth. The analysis began by reading, several times, each of the texts that the midwives had written about their experiences of using the Cubitus baby device in caring for the parents. Then, meaningbearing units in the text were marked. A total of 261 meaningbearing units were identified, and these were then sorted into categories and entered into Excel. Next, the meaning-bearing units were condensed, the text in each category was reviewed again, and the texts were sorted into subcategories.13 The project was approved by an Ethical Review Board, Dnr 20170316/1318. 4. Findings A total of 154 questionnaires were returned to the research group, from 40 of the 47 maternity clinics, and the open-ended question was left unanswered in 44 questionnaires. Most often, the Cubitus Baby device was used in the hospital, and for between one and three days. The shortest duration of use was three hours (n = 3), and the longest was 11 days (n = 1). Three families took their baby home in the Cubitus Baby cot. The device was most often placed in the parents’ bed, and in a few cases, it was placed in another room that the parents could visit when they wished. The analysis of the open-ended question resulted in four categories with two subgroups in each category: (1) Feelings of dignity, with subgroups Satisfactory feelings in working with grief, and Design and function; (2) Caring cooling, with subgroups The cooling function, and A cold baby; (3) Time for farewell, with subgroups Time together, and Time to make your own choice; and (4) Satisfying feelings for the parents, with subgroups The parents and Cubitus baby, and The possibility for bonding. The numbers in parentheses after each quotation below indicates the questionnaire from which the quotation was taken. 4.1. Feelings of dignity Dignity was a word that was used often. Midwives felt that it was dignifying that the child could lie in the Cubitus Baby cot and that it was dignifying for the parents to be able to see their baby in that environment. Some midwives expressed their thanks, stating that the device had contributed to a promoting a good experience with this type of
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
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care. The midwives described the Cubitus baby cot as “soft”, “beautiful”, “tranquil”, “respectful” and “inviting”, and they noted that the design was “smooth” and “neutral”. The device felt pleasant to use and to show to the parents. They arranged the bedding and tried to make it cozy around the baby with blankets and the sheet. Depending on how large the child was, they tried to adapt the bedding so that the cot was appropriate, even for a very small child. The midwives expressed positive views about the simple cooling function. “A significantly much greater feeling of dignity in these situations.” (2) “An incredibly fine and good aid in a difficult situation.” (128) “Looks very cozy around the child!” (116) 4.2. Caring cooling The midwives reported that Cubitus Baby maintained the cooling well and that the cooling blocks remained cold for a long time. The cooling function performed well, even during warm summer days. The babies had remained in good condition longer than they had in the past, when the routine practice was to move them back and forth between the refrigerator and the parents’ room. One of the midwives reported that the sister of the stillborn baby had helped her change the cooling blocks, and some midwives viewed changing the cooling blocks as part of the care of the baby. The need to keep the stillborn baby cold had been previously experienced by the midwives as something stressful. They had to take the child from the parents and put the baby in the refrigerator or cold room. Several midwives said that it was nice not to have to move the child and disturb the parents, and also that the baby could remain lying in Cubitus Baby while the parents arranged the blankets and teddy bears. The baby maintained a low temperature even during midsummer. The freezer packs maintained the low temperature for a long period of time. (17) “Easy to change the freezer packs, but you do not need to make much of this, big sister helped with this.” (69) “Didn’t need to worry about having to put the child in a refrigerator (which otherwise can be a stress factor).” (84) 4.3. Time for farewell The midwives noted that it felt completely natural that the baby was able to be with its parents, just like any other newborn baby, without any interruptions caused by taking the baby to the cold room. Relatives came by to visit and the baby was there in a natural way the whole time. Some parents chose to take their baby home, and one couple put the Cubitus Baby cot in a baby carriage and took a walk with their child. The midwives said that the parents were grateful for the time they were given to be with the baby, and that they themselves could decide when it was time to have that final farewell. The midwives felt that it was good that the parents got the chance to bond with their stillborn baby in whatever way they chose. Some parents wanted to see their baby for a short while and then wanted the child to be placed in another room. Others wanted to have their baby with them during the day and then let the child be with the health-care staff during the night. In some cases, the parents had gone home and then had come back to the hospital to look at the baby again, who, during that time, had remained in the Cubitus baby cot. The parents said that it was comforting to know that the baby was still there while they returned home for a while. Several midwives noted that it was possible for the parents themselves to decide how close they wanted to be to their child. The midwives said that they felt it was good that the child could still be in the cot, even
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when the parents did not want the baby to be in the same room where they were staying. “Cubitus baby was a pre-requisite for the parents to have the baby at home right up to the funeral.” (12) “They felt that it was a positive experience for them, personally, to have the time needed to say farewell.” (20) “They had Cubitus baby in their own bed and could therefore have the child there even when they were resting/sleeping.” (36) 4.4. Satisfying feelings for the parents A number of midwives observed that the parents appreciated Cubitus Baby, even in the midst of their sorrow. Some parents had said to the midwives that the cot looked nice when the baby lay there tucked in. The midwives described Cubitus Baby as a resource for the parents and that it had contributed to a good experience for them. Some of the midwives noted that they experienced Cubitus Baby as helping the parents to become connected with the baby. The cot made it possible for them to be close to their child and to create a natural parent-child situation. The parents picked the baby up out of the bed themselves, put their own blankets and teddy bears in the bed, and took pictures of the child lying in Cubitus Baby. “They thought it felt nice with Cubitus Baby.” (41)
5. Discussion Giving parents uninterrupted time with their deceased child is a meaningful benefit of using the Cubitus Baby device. The midwives felt that they were able to provide a more dignified kind of care when they no longer needed to place the stillborn baby in a refrigerator. We found that the midwives were satisfied with not needing to separate the parents from their baby. The device could keep the body cold. Previously, the midwives would feel stressed by having to take the baby from the parents and place the stillborn baby in the cold room or put the stillborn baby in a refrigerator. In the study by Fenwick et al.,14 the midwives reported that it was important for them to be able experience feelings of satisfaction in the care of the stillborn when the opposite response left them feeling stressed and frustrated. The midwives in the present study reported that Cubitus Baby contributed to providing the parents with a satisfied experience in the midst of their sorrow. Fenwick et al.14 also found in their study that midwives were satisfied with their work when they could give the parents a positive experience despite the sorrowful situation. As a result of this new way of working, the midwives in the present study felt that a family who had lost a baby could become closer to their child at the pace at which they wanted, and that they were given the time they needed to say farewell to their baby. In a study of perinatal palliative care, midwives reported that it was rewarding to take care of parents and their stillborns.14 This gave them a feeling of satisfaction in being able to care for these families and in being given a chance to use their experience to be able to support the parents and make a difficult time less traumatic. The midwives created opportunities for the parents to be present and to care for their child.14 O’Connell et al.7 found in their study that the women found it very meaningful to spend time with their stillborn children and to take the time to create a memory. The family should be able to get help to create a quiet atmosphere in which they can say farewell in peace.10 In our study, the midwives said that they were able to provide more dignified care when they no longer needed to place the
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013
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stillborn baby in a refrigerator. Munson and Leuthner3 note that one of the most important goals of perinatal palliative care is to enable the parents to feel like parents of a new-born baby, even if the baby is stillborn. Perinatal palliative care is a concept that has not yet taken hold in Sweden. Midwives, with their specialist knowledge, are the ones who are best suited to take primary responsibility for the perinatal palliative care that should be a matter of course in every maternity ward.15 Peters et al.8 state that midwives need specific training in caring for parents and the stillborn baby and it must also be made possible for them to be given support in facing their own feelings that may arise during the course of this work. That midwives need additional training in perinatal palliative care has been emphasized by Peacock et al.15 as well as by O’Connell et al.7 5.1. Methodological considerations Included in this study were midwives who had assisted at a stillbirth and who had used the Cubitus Baby device in caring for the parents after the stillbirth. We do not know to which extent the sample is representative of midwives who have used the device in the care of stillborns and their parents. Further, we lack information from seven clinics and made no efforts to try and encourage them to return the questionnaires. We do not know the exact numbers of midwives who would have had exposure to Cubitus Baby. Further, some of the 47 hospitals with delivery units were quite small and may not have had any stillbirth cases that were managed using Cubitus Baby. Also, we did not perform interviews with midwives who did not complete a questionnaire after they had used the device. The lack of negative comments about Cubitus Baby and of using this device to support parents of stillborns can be interpreted as lack of representativeness. The midwives who participated in the study may have been especially interested in this kind of care; they all had substantial experience in contrast with, for example, midwives who would have just finished their training and who might find this kind of care to be somewhat frightening, at least at first. This might possibly have been a factor in shaping the overwhelmingly positive attitude towards the Cubitus Baby device. 6. Conclusion There is no doubt that Cubitus Baby has drastically changed the conditions for parents of stillborn babies in Sweden and for the midwives caring for them. Parents do not need to be separated from their child and now have more time to spend together with their baby to say farewell. Our study also shows that midwives experienced improved working conditions and satisfaction with the work. The stories we have heard also indicate that Cubitus Baby facilitates parents in parenting their deceased child during the short time they have before their farewell. Funding The development of Cubitus Baby was funded by the Ruth and Richard Julins Fund, Swedish national Infant Fund and Sophiahemmet Funds.
Ethical statement The study is approved by Sophiahemmet University Ethical Review Board, Dnr 20170316/1318. Conflicts of interest The conflict of interest implied here has been clearly specified for inclusion in this publication, disclosing that the inventor receives a small royalty for each device sold (in the same proportion as are royalties in the book publishing industry). Disclosure Ingela Rådestad invented Cubitus baby. She has royalties from the company FONUS who produce and sell Cubitus baby after the tool was delivered (as a non-profit project) to all maternity wards. References 1. Flexmort.com [internet]. CuddleCot. Available from: http://flexmort.com/wpcontent/uploads/2012/12/CuddleCot-Manual-Sept-2017.pdf. 2. Brody JE. A device that gives parents of stillborn babies time to say goodbye. The New York Times Available from: https://www.nytimes.com/2019/01/14/well/ family/a-device-that-gives-parents-of-stillborn-babies-time-to-say-goodbye. html, Online January 14 3. Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin N Am 2007;54(5):787–98. doi:http://dx. doi.org/10.1016/j.pcl.2007.06.006. 4. Wool C, Côte’-Arsenault D, Perry Black B, Denney-Koelsch E, Kim S, Kavanaugh K. Provision of services in perinatal palliative care: a multicentre survey in the United States. J Palliat Med 2016;19(3):279–85. doi:http://dx.doi.org/10.1089/ jpm.2015.0266. 5. Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonat Nurs 2006;20(1):113–6. 6. Van Hoover C, Holt L. Midwifing the end of life: expanding the scope of modern midwifery practice to reclaim palliative care. J Midwifery Womens Health 2016;61(3):306–14. doi:http://dx.doi.org/10.1111/jmwh.12454. 7. O’Connell O, Meaney S, O’Donoghue K. Caring for parents at the time of stillbirth: how can we do better? Women and birth. J Aust Coll Midwives 2016;29(4):345–9. doi:http://dx.doi.org/10.1016/j.wombi.2016.01.003. 8. Peters MDJ, Lisy K, Riitano D, Jordan Z, Aromataris E. Caringfor families experiencing stillbirth: evidence-based guidance for maternity care providers. Women Birth 2015;28:272–8. doi:http://dx.doi.org/10.1016/j.wombi.2015.07.003. 9. Erlandsson K, Warland J, Cacciatore J, Rådestad I. Seeing and holding a stillborn baby: mothers’ feelings in relation to how their babies were presented to them after birth — findings from an online questionnaire. Midwifery 2013;29 (3):246–50. doi:http://dx.doi.org/10.1016/j.midw.2012.01. 10. Rådestad I, Steineck G, Nordin C, Sjögren B. Psychological complications after stillbirth-influences of memories and immediate management: population based study. Br Med J 1996;312(7045):1505–8. doi:http://dx.doi.org/10.1136/ bmj.312.7045.1505. 11. Säflund K, Sjögren B, Wredling R. The role of caregivers after a stillbirth: views and experiences of parents. Birth 2004;31(2):132–7. doi:http://dx.doi.org/ 10.1111/j.0730-7659.2004.00291.x. 12. Brown E, Dominica F. Around the time of death: Culture, religion and ritual. In: Goldman A, Hain R, Liben S, editors. Oxford textbook of palliative care for children. Oxford: University Press; 2012. p. 142–53. 13. Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health 2012;40:795–805. doi:http://dx.doi.org/10.1177/ 1403494812465030. 14. Fenwick J, Jennings B, Downie J, Butt J, Okanaga M. Providing perinatal loss care: satisfying and dissatisfying aspects for midwifes. Women Birth 2007;20:153–60. doi:http://dx.doi.org/10.1016/j.wombi.2007.09.002. 15. Peacock V, Price J, Nurse S. From pregnancy to palliative care: advancing professional midwifery practice. Practising Midwife 2015;18(10):18–25https:// www.ncbi.nlm.nih.gov/pubmed/26669048.
Please cite this article in press as: K.H. Listermar, et al., Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby, Women Birth (2019), https://doi.org/10.1016/j.wombi.2019.05.013