Further Reading for Health Professionals - Multiple Pregnancy Grief

1. Aagaard, H., Storm, I., & Klitgaard, J. (2016). Losing One Twin in the NICU–A Case Study of the Parental Experience. Journal of Neonatal Nursing. doi: 10.1016/j.jnn.2016.03.001

Department of Paediatrics, Aarhus University Hospital, Denmark

The aim of this case study was to generate a deeper understanding of parents’ experiences of losing one twin in the NICU. In an in-depth interview the parents told their story of giving birth to twins born extremely preterm and shortly after losing one of them. A thematic analysis was conducted and revealed tree overall themes. These themes indicate that besides struggling with grief related to the loss of one infant, the parents were challenged by the medical discourse, the lack of staff continuity and space to develop parenthood. This case study emphasizes how the loss of a premature twin reinforced the parents’ need of an understandable dialogue with a team of nurses. Furthermore the nurses have to offer a close partnership and create the necessary space for parents to develop parenthood while simultaneously dealing with the unexpected and traumatising circumstances related to the loss of an infant.

2. Richards, J., Graham, R. H., Embleton, N. D., & Rankin, J. (2016). Health Professionals’ Perspectives on bereavement following Loss from a Twin Pregnancy: A Qualitative Study. Journal of Perinatology. doi:10.1038/jp.2016.13

Objective: To provide an in-depth understanding of the perspectives of health professionals caring for parents who have lost a baby from a twin pregnancy, either during pregnancy or in the neonatal period. Study Design: A qualitative study involving semi-structured interviews. Twenty-six health professionals were interviewed from maternity and neonatal departments in one hospital. Data were analyzed using a generative thematic approach. Results: Three main themes were identified from the data: health professionals’ lack of confidence in their interactions with bereaved parents; their desire to learn more about bereavement; and a consideration of sensitive health-care practices for bereaved parents. Conclusions: Health professionals acknowledged that parents who experience the loss of a twin have specific needs, some of which can be addressed by relatively small changes to clinical practices and behaviors. They felt, however, that they needed education about bereavement in order to react more effectively to bereaved parents’ needs.

3. Cox, A., & Wainwright, L. (2015). The Experience of Parents who Lose a Baby of a Multiple Birth during the Neonatal Period–A Literature Review. Journal of Neonatal Nursing, 21(3), 104-113. doi:10.1016/j.jnn.2014.11.003

Guy’s and St Thomas’ NHS Foundation Trust, London, UK

This literature review investigates the experience of parents who return to the NICU, following the death of a twin or higher order multiple (HOM), in order to care for a surviving infant. Infants of multiple births are considered at greater risk of prematurity and therefore of death. Bereaved multiple birth parents were identified to grieve similarly to bereaved singleton parents; however, it was acknowledged that they may have difficulty coping with such grief in the presence of a surviving co-multiple and, potentially unacknowledged, disenfranchised grief. ‘Hurtful’ and ‘helpful’ interactions with Healthcare Professionals (HCP) as well as the general public were a frequently recorded theme. As multiple birth rates continue to increase, HCP will be greater exposed to the unique needs of bereaved multiple birth parents. As Nurses, we work closely with parents on a regular basis, and are therefore best positioned to provide compassionate, un-discriminative, holistic care, to bereaved parents in line with the Nursing & Midwifery Council’s (NMC) (2008) Code of Conduct. From reviewing the available literature it is evident that there is need for greater training, education and acknowledgement of multiple birth bereavement, within Neonatal End of Life (EoL) care.

4. Humphrey, V. P. (2015). Two Twinless Twins seen through the Direct and Indirect Lenses of Infant Observation. Infant Observation, 18(2), 126-142. doi:10.1080/13698036.2015.1054854

This paper links infant observation with clinicians’ increased awareness of early psychic states in patients. The observation of a premature baby is linked with clinical material from an adult patient who was also premature. Both the baby and the adult had lost a twin soon after they were born. The paper also links premature babies’ experience of the Neonatal Intensive Care Unit where the treatment which is keeping them alive also involves repeated experiences of physical pain and terror. The clinical material of the adult patient reveals how the analysis enabled her to process, and put into words her earliest experiences, which had become embedded, often somatically, within her. The parallels between the observation of the premature baby and the vivid feelings of the adult patient, which the author observed and contained, reveal the detail of what is retained from our earliest experiences. It is the author’s contention that infant observation, which includes an examination of the countertransference, enables the observer as well as the clinician, to identify himself or herself with the feeling states of the earliest moments of life.

5. Richards, J., Graham, R., Embleton, N. D., Campbell, C., & Rankin, J. (2015). Mothers’ Perspectives on the Perinatal Loss of a Co-Twin: A Qualitative Study. BMC Pregnancy and Childbirth, 15, 143. doi: 10.1186/s12884-015-0579-z [full text]

Institute of Health & Society, Newcastle University, Newcastle upon Tyne, England, UK

BACKGROUND: There is a growing body of literature exploring the emotional impact of perinatal loss upon parents but only limited research focussing specifically on the views and experiences of parents who have experienced a loss from a twin or higher order pregnancy. We undertook a qualitative study to provide an in-depth understanding of the experiences of mothers who have had a loss from a twin pregnancy and subsequently continued visiting hospital whilst their surviving twin was cared for. METHODS: A qualitative study involving semi-structured interviews. Mothers were recruited from a Neonatal Intensive Care Unit and Fetal Medicine department. Fourteen interviews were carried out with mothers who had experienced a loss in pregnancy or the neonatal period and had a surviving twin on the neonatal unit. Data were analysed using a generative thematic approach. RESULTS: The analysis identified three key themes in the accounts mothers gave of their experiences: the status of ‘special’; the importance of trust; and control and empowerment. Where the surviving co-twin remained in hospital for many weeks, mothers described the emotional support of health professionals as crucial to their wellbeing. Few mothers sought formal bereavement support, instead they kept their grief ‘on hold’ in order to support their surviving baby. Due to the trauma of their loss, mothers reflected that they had been unable to make informed decisions, in particular in relation to the funeral of their deceased baby. CONCLUSIONS: Our study highlighted that there are a specific set of issues for mothers who have lost a baby from a twin pregnancy. Relatively small changes to practice however, made a significant difference to wellbeing during their time in hospital with a surviving twin. Findings from this research will provide insight into the needs of bereaved mothers, will inform healthcare planning and the development of care packages.

6. Greenway, M. (2014). Art Therapy in Search of a Lost Twin. In Gilroy, A. & Dalley, T. (eds.). Pictures at an Exhibition (Psychology Revivals): Selected Essays on Art and Art Therapy (p. 220). London: Tavistock/Routledge. Find in an Australian library

7. Headley, O. (2014). The” Twinless Twin”. The Passing of a Twin and its Effects on the Twin that Survived.

City University of New York Hunter College

Following the death of a spouse, sibling, friend or significant other there are general ways that individuals usually grieve. This has been shown through countless amounts or research and articles. This research allows for counselors, friends and family to lend support to those through their time of bereavement. In the absence of research it becomes harder to lend support, which leaves individuals isolated and alone while they go through a major crisis. The loss of a twin is a type of loss that is not widely researched but yet is experienced by many throughout the world. This population of bereft are labeled ‘forgotten mourners’ due to the fact that although this trauma occurs, there isn’t much research done on how to support them in their time of need. Being able to understand the unique nature of twin loss will allow for counselors and social work practitioners to be able to lend their support and find ways to guide individuals that have lost their twin as well as guide families and parents through this time. This paper explores the symptomology of individuals at different developmental stages and the impact that bereavement has on their identity development. In addition this paper will examine the different grief levels and twin attachment styles along with western and non-western beliefs surrounding the life and death of twins in hopes to bring light to a forgotten population, ‘Twinless twins’.

8. Segal, N. L., & Bouchard Jr, T. J. (2014). Grief Intensity Following the Loss of a Twin and Other Relatives: Test of Kinship Genetic Hypotheses. Human Biology, 65(1), 8.

Objective: To provide an in-depth understanding of the perspectives of health professionals caring for parents who have lost a baby from a twin pregnancy, either during pregnancy or in the neonatal period. Study Design: A qualitative study involving semi-structured interviews. Twenty-six health professionals were interviewed from maternity and neonatal departments in one hospital. Data were analyzed using a generative thematic approach. Results: Three main themes were identified from the data: health professionals’ lack of confidence in their interactions with bereaved parents; their desire to learn more about bereavement; and a consideration of sensitive health-care practices for bereaved parents. Conclusions: Health professionals acknowledged that parents who experience the loss of a twin have specific needs, some of which can be addressed by relatively small changes to clinical practices and behaviors. They felt, however, that they needed education about bereavement in order to react more effectively to bereaved parents’ needs.

9. Wilkinson, M. (2014). I Never Knew Charlie McKnight. Australian Midwifery News, 14(Spring): 38.

Midwife’s reflection on the sudden neonatal death of one prematurely born twin.

10. Andersson Wretmark, A. (2012). The Spirit of Survival, Loss and Grief: The Issue of Surviving Twins. MIDIRS Midwifery Digest, 22(4), 423-429.

11. Kollantai, J. A. (2012). Loss and Grief in Twin Pregnancy and Birth. International Journal of Childbirth Education, 27(2).

Many expectant parents of twins experience the death of one or both babies. This may happen in pregnancy, at birth, after birth, or in infancy, and in a number of scenarios. All of the considerations that are important when a singleton baby dies are equally important when a twin or twins have died. There are additional needs specific to bereaved parents of twins at the time of their loss, and throughout the ongoing grieving process. Sensitive, informed care by professionals is a major contributor to the future wellbeing of the parents and of surviving of subsequent children.

12. Lee, K.E. (2012). Critical Review of the Literature: Parental Grief after the Loss of a Multiple. Journal of Neonatal Nursing, 18(6): 226-31. doi:10.1016/j.jnn.2011.12.002

Neonatal Intensive Care Unit (NICU) nurses are commonly responsible for the care of multiple birth families who are experiencing the unique paradox of grieving for one infant while simultaneously hoping for and attaching to their living infant. It is therefore imperative that the NICU nurse has an understanding of how to provide care that is supportive, holistic and healing for families who have lost a twin. As such, a review of the literature was conducted to develop a greater understanding of the grief parents of a multi-fetal pregnancy experience when one or more of their infants are lost either prior to delivery or in the neonatal period. Recommendations are put forth as to how the NICU nurse can provide care for bereaved parents of multiples as aligned with the human science paradigm of nursing. Additionally, limitations of the current literature as well as recommendations for future research are discussed.

13. Attia, L., & Nolan, A. (2011). Caring for Parents following the Death of a Twin: A Student’s Experience. British Journal of Midwifery, 19(10), 665-669.

Reflection encourages midwives to challenge their thoughts, feelings and beliefs, and, as a result, creates a questioning approach to existing knowledge. While reflection is part of best practice and improving care, when reflection involves dealing with birth and death at the same time, the challenge can be immense. This article is a reflective account of a student midwife’s experience of caring for bereaved parents. It highlights the caring relationship that was built up between them. The student reflects on the bittersweet experience of a young couple’s attempt to deal with the complexity of emotion experienced at the time of the birth and death of their twin daughter. As the account unfolds, the unique role of the midwife in facilitating parents’ grieving at the time of childbirth can be clearly seen. The importance of parents spending time with their baby is highlighted. Discussion also focuses on the significance of creating mementos in the grieving process.

14. McGrath, J. M., Butt, M. L., & Samra, H. A. (2011). Supporting Parents who Lose a Child of a Multiple Birth: A Critical Review of Research in the Neonatal Intensive Care Unit. Newborn and Infant Nursing Reviews, 11(4), 203-214. doi:10.1053/j.nainr.2011.09.011

Virginia Commonwealth University, School of Nursing, Richmond, VA, USA

Loss of a child in the neonatal period is a devastating event for the family. Yet, when the child is one of twins or higher-order multiples, that loss can easily be dismissed with attention shifting to the surviving infant(s). Parents may be unable to grieve or may delay grieving until the surviving infant(s) is more stable. Little research exists to guide clinical practice. This integrated review summarizes the research literature on the experiences of parents of multiples when an infant does not survive and at least 1 surviving infant remains and the interventions to support the bereaving parents and concludes with suggestions for clinical practice and future research. Health care professionals need to balance the care of the surviving infant with care of the grieving parents. Ultimately, for the parents to attach appropriately to the surviving infant(s), they need to grieve the loss of the child(ren) that did not survive.

15. Pector, E. (2004). How Bereaved Multiple-birth Parents Cope with Hospitalization, Homecoming, Disposition for Deceased, and Attachment to Survivors. Journal of Perinatology, 24(11): 714-22.

Spectrum Family Medicine, Naperville, IL, USA

OBJECTIVE: To elicit bereaved multiple-birth parents’ perceptions regarding support, disposition decisions, attachment to surviving multiples, discharge, and later coping.

STUDY DESIGN: Narrative email survey of 70 bereaved parents with quantitative and qualitative analysis.

RESULTS: Bereaved parents of multiples find neonatal hospitalization stressful. Not all caregivers acknowledged loss, although most parents would welcome brief loss discussions during survivors’ hospitalization. Half of respondents felt social workers could help coordinate support or mental health care. Most participants recalled hospital support for loss, but only 43% recalled support for neonatal hospitalization. Respondents praised peer support and written materials. Parents felt ambivalent about disposition for deceased babies while comultiples were ill; most made prompt arrangements. Attachment to survivors was difficult for half. Breastfeeding and discharge planning were important, and 31% had difficulty coping at home.

CONCLUSIONS: Caregivers must communicate better with bereaved multiple-birth parents, whose desires for support, loss discussions, disposition, and discharge vary considerably.

16. Becker, S. & Knudson, R. (2003). Visions of the Dead: Imagination and Mourning. Death Studies, 27(8): 691-716.

University Counseling and Testing Center, University of Oregon, Eugene, Oregon, USA

Contemporary research recognizes the existence of an ongoing attachment between the mourner and the deceased. This research tends to focus on the subjective aspects of the attachment—the mourner’s memory and emotions. A complementary perspective is offered by archetypal psychology, which considers the deceased to exist outside the mourner’s subjectivity as an autonomous image. This approach is illustrated by an exemplary case: a woman named Verda who experienced the death of her twin sister,Vera.Their account suggests that Verda’s mourning derives from her encounters with Vera’s continuing imaginal presence.

17. Bryan E. &, Higgins R. (2002). Comments On and Extracts From: The Death of a Twin: Mourning and Anniversary Reactions - Fragments of 10 Years of Self-analysis by George Engel. Twin Research, 5(3): 206-9.

Multiple Births Foundation, Queen Charlotte’s & Chelsea Hospital, London, UK

Only recently has the special bereavement associated with the loss of a twin been generally recognised. With the notable exception of Joan Woodward, few have written on the subject. We, therefore, offer a shortened version of a paper written nearly 30 years ago. George Engel was himself a lone twin as well as being an eminent psychiatrist and psychoanalyst in the United States. The length of the paper precludes reprinting the totality but we hope readers will be encouraged to seek out the original published in The International Journal of Psycho-analysis in 1975, Vol 56 part 1, 23-40.

18. Pector EA, Green J, Ehlers M, Carr KR, Larsen SB, Monaghan O, … Glahn A. (2002). Personal Experiences of Bereaved Twins, Parents of Twins, and their Carers. Twin Research, 5(3): 236-44.

We invited bereaved twins, parents of twins and carers to describe some of their personal experiences. We are grateful to all of them for their brave candour. We gave extra space to Kathy’s story about the impacts of the loss of her own twin because it vividly illustrates the profound connections twinship can generate. Similarly we thought the cruelly long and complex saga of the life and death of Maxine’s twins could help understanding of the distressing repercussions that often attend the low birth weight and prematurity that are so common amongst multiple births.

19. Pector, E.A. & Smith-Levitin, M. (2002). Mourning and Psychological Issues in Multiple Birth Loss. Seminars in Neonatology, 7(3): 247-56.

Spectrum Family Medicine, SC 1220 Hobson Road, Suite 216, Naperville, IL, USA

Grief after the death of some or all multiples differs from mourning for a singleton loss in many important respects. A review of the unique features of grief for a multiple birth loss is followed by practical suggestions for empathic care. Cherished mementos and photos, and disposition options for deceased children are discussed. Counselling needs of parents and siblings are detailed, and management options for many complex pregnancy and infant loss scenarios are presented. The abundant resources listed will help caregivers and families better cope with one of the most difficult complications of plural parenthood.

20. Segal NL & Blozis, S.A. (2002). Psychobiological and Evolutionary Perspectives on Coping and Health Characteristics following Loss: A Twin Study. Twin Research, 5(3): 175-87.

Department of Psychology, California State University, Fullerton 92834, USA

An analysis of coping, grief and health characteristics is reported for a bereaved monozygotic (MZ) and dizygotic (DZ) same-sex twin sample. The data were examined with reference to psychobiological and evolutionary perspectives on behavior. A Coping Scale, included as part of a comprehensive Twin Loss Survey (TLS), assessed coping with daily responsibilities and activities 1-2 months before the co-twin’s death, 1-2 months following the co-twin’s death and currently. A Grief Intensity Scale obtained judgments of grief 1-2 months following the loss, and currently. Information on physical symptoms was available from the Somatization Scale of the Grief Experience Inventory. Psychobiological and evolutionary perspectives specified hypotheses for two twin groups: one model was specified to reflect bereavement experiences immediately following loss of the co-twin (retrospective twin group); a second model represented present bereavement response (current twin group). Consistent with psychobiological theory, twins’ social closeness showed a positive association with grief intensity which, in turn, affected somatic symptoms and coping efficacy in predicted directions. With respect to evolutionary psychological theory, the effect of zygosity on current grief implicated correlates of genetic relatedness as factors in the bereavement process.

21. Segal NL, Sussman LJ, Marelich WD, Mearns J, & Blozis SA. (2002). Monozygotic and Dizygotic Twins’ Retrospective and Current Bereavement-related Behaviors: An Evolutionary Perspective. Twin Research, 5(3): 188-95.

Department of Psychology, California State University, Fullerton, CA, USA

The present study compared bereavement responses of 325 monozygotic (MZ) and 176 dizygotic (DZ) adolescent and adult twins following the loss of their co-twins. A subset of twins completed the Grief Experience Inventory using a retrospective time frame, while a second subset completed it using a current time frame. It was hypothesized that MZ twins (in both retrospective and current groups) would report higher levels of grief-related behavior than DZ twins, consistent with Hamilton’s (1964) concept of inclusive fitness. Discriminant function and profile analyses yielded supportive findings, but only for the retrospective MZ and DZ twin comparisons. Females in both groups expressed higher levels of bereavement-related behavior than males. Findings are discussed with reference to theoretical aspects of grief and mourning.

22. Swanson P, Brockbank J, Houghton J, Mountbatten P, Read B, Ross A, & Woodward J. (2002). Panel discussion. Grief and Bereavement with the Loss of a Twin. Twin Research, 5(3): 150-2.

23. Swanson PB, Pearsall-Jones JG, & Hay DA. (2002). How Mothers Cope with the Death of a Twin or Higher Multiple. Twin Research, 5(3): 156-64.

School of Psychology, Curtin University of Technology, Australia

Estimates suggest up to 15% of multiples grow up as singleton survivors. Few studies have reported how bereaved multiple birth mothers with a surviving multiple cope with their bereavement. Using the population-based Western Australian Twin Child Health study database and other sources, we interviewed 66 bereaved mothers with at least one surviving multiple. For many, this contact was the first acknowledgement of their status as multiple birth mothers since their loss. The Beck Depression Inventory 2nd Edition (BDI) showed significant reduction in depression between the time of loss and our interview. For mothers as a group there was a high correlation between current and retrospective BDI, and retrospective BDI and all three Perinatal Grief Scales (PGS). There was a significant correlation between the three grief factors on the PGS. When subdivided, this held for mothers who suffered a loss at or before the neonatal period, but not for those whose loss occurred later. Bereaved mothers of multiples scored significantly higher on the PGS than the PGS norm for bereaved mothers of singletons, which we attribute to others not acknowledging their grief, and/or recruitment differences. There were no significant differences in PGS scores related to cause, the time since death, or sibling number or age. Spiritual beliefs and finding meaning in loss were positively related to scores for adjustment and acceptance. Although traumatised, most mothers accommodated their losses meaningfully in their lives. Their own support recommendations are included.

24. Tomassini C, Rosina A, Billari FC, Skytthe A, Christensen K. (2002). The Effect of Losing the Twin and Losing the Partner on Mortality. Twin Research, 5(3): 210-7.

Age Concern Institute of Gerontology, King’s College, London, UK

Several studies have explored the impact of marital bereavement on mortality, while increasing emphasis has recently been placed on genetic factors influencing longevity - in this paper, we study the impact of losing the spouse and losing the co-twin, for twins aged 50 to 70. We use data from the Danish Twin Registry and the Population Register of Denmark for the period 1968 through 1999. Firstly, we use survival analysis to study mortality after the death of the spouse or the co-twin. We find that the risk of dying is highest in the first year after the death of the spouse, as well as in the second year after the death of the co-twin. We then use event history analysis techniques to show that there is a strong impact of the event ‘losing the co-twin’ even after controlling for age, sex and zygosity and that this effect is significantly higher in the second year of bereavement. The effect is similar for men and women, and it is higher for monozygotic twins. The latter confirms the influence of genetic factors on survival, while the mortality trajectory with a peak in the second year after the death of the co-twin is consistent with the existence of a twin bereavement effect.

Last reviewed: 16/11/24