Further Reading for Health Professionals - Sudden and Unexpected Death of an Infant or Young Child
1. Mowll, J., Lobb, E. A. & Wearing, M. (2016). The Transformative Meanings of Viewing or Not Viewing the Body after Sudden Death. Death Studies, 40:1, 46-53. doi: 10.1080/07481187.2015.1059385
The School of Medicine, The University of Notre Dame, Darlinghurst, NSW, Australia
This study investigates the experience of viewing or not viewing the body for 64 relatives bereaved after a sudden and unexpected death. Thematic analyses of in-depth interviews reveal the importance of viewing and the challenges in providing choice. Some participants experienced difficulties including regret and intrusive images. These are discussed alongside the transformative meanings of seeing or not seeing the body for bereaved relatives.
2. Stastny, P. F., Keens, T. G., & Alkon, A. (2016). Supporting SIDS Families: The Public Health Nurse SIDS Home Visit. Public Health Nursing. doi: 10.1111/phn.12251
Department of Public Health, Orange County Health Care Agency and Los Angeles County, Laguna Beach, California
Sudden infant death syndrome (SIDS) death has a devastating effect on parents. There is no known cause, so parents experience guilt about what they might have done or not done to contribute to the death. Although some SIDS parents may receive support from family and friends, the public health nurse (PHN) has an important professional role in providing grief support, SIDS education, and offering SIDS resources and referrals. Based on years of clinical practice, we recommend the following: Perform the home visit as soon as possible. Show care and compassion. Personalize the baby by using his or her name and asking to see photographs. Reassure the parents that grief is a process which takes time. Educate about what SIDS is and what it is not. Increasingly, SIDS deaths occur in the presence of risk factors. Explain that risk factors are not causes of death. As an authority in health care, reassuring families that they did not cause their baby’s death has a tremendous impact on relieving guilt. Putting newly bereaved SIDS parents in contact with other SIDS parents is one of the most helpful actions a PHN can take to help families.
3. Endo, K., Yonemoto, N., & Yamada, M. (2015). Interventions for Bereaved Parents following a Child’s Death: A Systematic Review. Palliative Medicine, 29(7), 590-604. doi: 10.1177/0269216315576674
Department of Neuropsychopharmacology, National Institute of Mental Health, National Center of Neurology and Psychiatry, Tokyo, Japan
Background: A child’s death is one of the most stressful events that parents and siblings may experience. Interventions for bereaved families following a child’s death have been examined over the last several decades. However, there is little high-quality evidence to support any rationale for determining optimal interventions for bereaved parents and siblings. Aim: This study objectives were to evaluate the efficacy of interventions for bereaved parents and siblings following a child’s death, to collect empirical evidence of the quality of these intervention studies, and to identify methodological challenges. Design: A systematic review of data from randomized controlled trials of interventions for parents or siblings bereaved after a child loss. Data sources: We searched MEDLINE (from 1949), PsycINFO (from 1806), and CINAHL (from 1806) databases for key terms and checked the reference lists of potentially relevant articles. Results: We identified nine articles describing eight eligible trials from which we extracted data. The four types of intervention included support groups, counseling, psychotherapy, and crisis intervention. Most intervention trials showed some effect on participants in at least one outcome measure. However, we identified many severe methodological issues and outcome sets in these trials. Conclusion: Very little evidence of sufficient quality is available to confirm the effects of intervention measures on bereaved parents and siblings following a child’s death. Well-designed randomized controlled trials are needed to improve our understanding of the efficacy and implementation of interventions targeting bereaved parents and siblings.
4. Leming, M.R. & Dickinsin, G.E. (2015). Sudden Infant Death Syndrome. In Understanding Dying, Death, and Bereavement. 8th edn. Find in an Australian library
5. Meert, K. L., Eggly, S., Kavanaugh, K., Berg, R. A., Wessel, D. L., Newth, C. J., ... & Doctor, A. (2015). Meaning Making during Parent–Physician Bereavement Meetings after a Child’s Death. Health Psychology, 34(4), 453-61. Doi: 10.1037/hea0000153 [full text]
Objective: Our goal was to identify and describe types of meaning-making processes that occur among parents during bereavement meetings with their child’s intensive care physician after their child’s death in a pediatric intensive care unit. Methods: Fifty-three parents of 35 deceased children participated in a bereavement meeting with their child’s physician 14.5 ± 6.3 weeks after the child’s death. One meeting was conducted per family. Meetings were video recorded and transcribed verbatim. Using a directed content analysis, an interdisciplinary team analyzed the transcripts to identify and describe meaningmaking processes that support and extend extant meaning-making theory. Results: Four major meaningmaking processes were identified: (1) sense making, (2) benefit finding, (3) continuing bonds, and (4) identity reconstruction. Sense making refers to seeking biomedical explanations for the death, revisiting parents’ prior decisions and roles, and assigning blame. Benefit finding refers to exploring positive consequences of the death, including ways to help others, such as giving feedback to the hospital, making donations, participating in research, volunteering, and contributing to new medical knowledge. Continuing bonds refers to parents’ ongoing connection with the deceased child manifested by reminiscing about the child, sharing photographs and discussing personal rituals, linking objects, and community events to honor the child. Identity reconstruction refers to changes in parents’ sense of self, including changes in relationships, work, home, and leisure. Conclusions: Parent-physician bereavement meetings facilitate several types of meaning-making processes among bereaved parents. Further research should evaluate the extent to which meaning making during bereavement meetings affects parents’ health outcomes.
6. Miles, M. S. (2015). Conceptual Approaches to Understanding Parental Grief After the Death of a Child. In Black, B., Wright, P. & Limbo, R. (eds.). Perinatal and Pediatric Bereavement in Nursing and Other Health Professions. New York: Springer. 185.
7. Raitio, K., Kaunonen, M., & Aho, A. L. (2015). Evaluating a Bereavement Follow‐up Intervention for Grieving Mothers after the Death of a Child. Scandinavian Journal of Caring Sciences, 29(3), 510-520. doi: 10.1111/scs.12183
School of Health and Social Studies, JAMK University of Applied Sciences, Jyväskylä, Finland
Aim The aim of this study was to produce information about parental grief intervention and its impacts on maternal grief. Background The grief after death of a child is a lifelong process. Social support is often stated as the most important factor in coping after the death of a child. Design A single measure post-test control group design was used to evaluate whether there are differences in the grief reactions between the mothers in the intervention program (n = 83) and the mothers in the control group (n = 53). Method The data were collected by using a questionnaire which included background variables and Hogan Grief Reactions Checklist 6 months after the child’s death. The data were analysed by statistical methods. Results There were no significant differences in the grief reactions between the intervention group and the control group. However, greater support from the healthcare professionals was associated with stronger personal growth. The mothers’ age, self-perceived health status and the age of deceased child were associated with the grief reactions. This study emphasises the importance of social support to grieving mothers. Conclusion Health care professionals are in an important role when considering support for grieving mothers; the given support may relieve the mothers’ grief reactions.
8. Rudd, R. A., & D’Andrea, L. M. (2015). Compassionate Detachment: Managing Professional Stress While Providing Quality Care to Bereaved Parents. Journal of Workplace Behavioral Health, 30(3), 287-305.
Department of Psychology, Eastern Washington University, Cheney, WA, USA
This phenomenological study examines the lived experience of professionals who have assisted parents after the sudden unexpected death of their child from sudden infant death syndrome, sudden unexpected infant death, and sudden unexplained death in childhood. Interview material was analyzed using Creswell’s six-step approach to qualitative data. Three types of involvement emerged as themes: early enmeshed emotions, emotional detachment, and compassionate detachment. Compassionate detachment marked a balance between emotional engagement with the newly bereaved parents and cognitive detachment from the trauma. All professionals mentioned relying on a philosophy of life and death as a means of coping with the stress of these cases. Having a solid cognitive belief structure seemed to be a protective factor when working with the sudden and unexplained death of a child. A case is made for the need for organizations to mitigate the deleterious effects of stress and burnout among health and emergency workers by providing psychological first aid and support to individuals that regularly respond to unexplained child deaths.
9. Stiffler, D., Cullen, D., Stephenson, E., Luna, G., & Hartman, T. D. (2015). When Baby Stops Breathing: Analysis of Mothers’ Interviews. Clinical Nursing Research, doi: 10.1177/1054773815619580
Indiana University, Indianapolis, USA
Sudden unexplained infant death is responsible for 14% of Indiana’s infant mortality. The purpose of this qualitative research study was to describe mothers’ experiences when death of an infant occurred suddenly and unexpectedly. Field deputies or social workers interviewed mothers from central Indiana during the child-death team investigations. The Thematic Analysis Program from the Joanna Briggs Institute was used to analyze interview data. Sixteen de-identified interview cases were extracted, and a meta-aggregate method was conducted. The three synthesized themes were Extreme Emotional Shock, We Feel Like We’re to Blame, and Working Toward Moving On. Understanding these phenomena from mothers’ experience may assist in eliminating risks associated with infant deaths and inform nursing practice and policy.
10. Blood, C., & Cacciatore, J. (2014). Parental Grief and Memento Mori Photography: Narrative, Meaning, Culture, and Context. Death Studies, 38(4), 224-233. doi:10.1080/07481187.2013.788584
School of Social Work , Arizona State University , Phoenix , Arizona , USA
Postmortem photography is a widespread practice in perinatal bereavement care, yet few studies have explored how it affects bereaved parents, or how it might be received by parents of older children. This study is an examination of the meaning, utility, and social context of postmortem photography in a sample of 181 bereaved parents. Data were subjected to both quantitative and qualitative analysis. Photographs were positively regarded by most parents after perinatal death and several parents of older children. Other parents rejected postmortem photography for aesthetic, personal, or cultural reasons. Brief recommendations are offered for healthcare providers.
11. Garstang, J., Griffiths, F., & Sidebotham, P. (2014). What do Bereaved Parents want from Professionals after the Sudden Death of their Child: A Systematic Review of the Literature. BMC Pediatrics, 14(1), 1. doi: 10.1186/1471-2431-14-269 [full text].
Background The death of a child is a devastating event for parents. In many high income countries, following an unexpected death, there are formal investigations to find the cause of death as part of wider integrated child death review processes. These processes have a clear aim of establishing the cause of death but it is less clear how bereaved families are supported. In order to inform better practice, a literature review was undertaken to identify what is known about what bereaved parents want from professionals following an unexpected child death. Methods This was a mixed studies systematic review with a thematic analysis to synthesize findings. The review included papers from Europe, North America or Australasia; papers had to detail parents’ experiences rather than professional practices. Results The review includes data from 52 papers, concerning 4000 bereaved parents. After a child has died, parents wish to be able to say goodbye to them at the hospital or Emergency Department, they would like time and privacy to see and hold their child; parents may bitterly regret not being able to do so. Parents need to know the full details about their child’s death and may feel that they are being deliberately evaded when not given this information. Parents often struggle to obtain and understand the autopsy results even in the cases where they consented for the procedure. Parents would like follow-up appointments from health care professionals after the death; this is to enable them to obtain further information as they may have been too distraught at the time of the death to ask appropriate questions or comprehend the answers. Parents also value the emotional support provided by continuing contact with health-care professionals. Conclusion All professionals involved with child deaths should ensure that procedures are in place to support parents; to allow them to say goodbye to their child, to be able to understand why their child died and to offer the parents follow-up appointments with appropriate health-care professionals.
12. Murphy, S., Shevlin, M., & Elklit, A. (2014). Psychological Consequences of Pregnancy Loss and Infant Death in a Sample of Bereaved Parents. Journal of Loss and Trauma, 19(1), 56-69. doi:10.1080/15325024.2012.735531
School of Psychology , University of Ulster at Magee , Londonderry , Northern Ireland
This study aimed to explore a broad range of psychological reactions to trauma in a sample of bereaved parents in order to assess whether the traumatic framework is adequate for describing the entire range of emotional reactions to infant death. A sample of bereaved parents (N = 455) who lost their child through perinatal or postnatal loss were compared to a control group of parents (N = 110) who gave birth to a healthy child. Multivariate regression analysis clearly demonstrated that bereaved parents scored significantly higher on the Depression, Anxiety, Dissociation, Sleep Disturbances, Somatization, Interpersonal Sensitivity, and Aggression subscales of the Trauma Symptom Checklist. Consistent with previous studies, the results showed that for up to 5 years postloss bereaved parents expressed elevated levels of trauma-specific and psychological outcomes, in particular interpersonal sensitivity and aggression.
13. Bellini, B., Cescut, A., Caravale, B., Galli, F., Paravicini, V., Lucchese, F., & Guidetti, V. (2013). Sudden Infant Dead: Reaction to Bereavement in Siblings and Mothers. Journal of Palliative Care & Medicine. [full text]
Department of Pediatrics and Child and Adolescent Neuropsychiatry, Faculty of Medicine and Odontoiatrics, ‘Sapienza’ University, Rome, Italy
Background: This study aims to determine if surviving siblings of children who died from Sudden Infant Dead Syndrome (SIDS) had behavioural or psychological problems and if their mothers had suffered from alexithymia. Methods: We have enrolled 39 families (58 children). The “Mourning Group” (MG) consisted in 16 families (28 children) with following characteristics: 1) having an infant die from SIDS; 2) having at least one surviving child aged 6 to 18 years; 3) at least 8 years of mourning. The control group (CG) consisted of 23 families (30 children) free from any kind of mourning experiences. We used CBCL 6-18 questionnaire to assess behavioural and psychological problems on siblings, and TAS-20 in order to measure alexithymia in mothers. Results: Children in the MG compared with children in the CG presented a significantly higher score in CBCL on “social problems”, whilst reported a significantly lower score on “social competencies”. Mothers in the MG compared with mothers in the CG presented significantly lower scores in the externally oriented thinking (subscale F3 of TAS). A positive significant correlation emerged between time of bereavement and difficulty in identifying feelings (subscale F1). Conclusions: Our study confirms the presence of social difficulties in siblings born in families that experienced SIDS and shows that most of the mothers had long lasting difficulties in identifying their feelings.
14. Brooten, D., Youngblut, J. M., Seagrave, L., Caicedo, C., Hawthorne, D., Hidalgo, I., & Roche, R. (2013). Parent’s Perceptions of Health Care Providers Actions around Child ICU Death what Helped, What did Not. American Journal of Hospice and Palliative Medicine, 30(1), 40-49. [full text]
Florida International University College of Nursing & Health Sciences, Miami, FL, USA
Purpose To describe parents’ perspectives of health care provider actions that helped or did not around the time of infant/child’s intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified. Findings What helped most: compassionate, sensitive staff; understandable explanations of infant’s/child’s condition; experienced, competent nurses; providers did everything to help infant/child; and parents’ involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child’s disease, care, complications. Conclusions Compassionate, sensitive staff and understandable explanations of children’s conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.
15. Christiansen, D. M., Elklit, A., & Olff, M. (2013). Parents Bereaved by Infant Death: PTSD Symptoms up to 18 years After the Loss. General Hospital Psychiatry, 35(6), 605–611. doi: 10.1016/j.genhosppsych.2013.06.006
Department of Psychology, University of Aarhus, Demark and also National Centre for Psychotraumatology, University of Southern Denmark
OBJECTIVE: Losing an infant or fetus late in pregnancy, during birth or in the first year of life is a potentially traumatic event for parents. However, little is known about the factors contributing to chronic posttraumatic stress reactions in this population. The present study examined chronic posttraumatic stress disorder (PTSD) symptoms and potential correlates in 634 mothers and fathers up to 18 years (M=3.4 years) after the death of their infant. METHODS: Members of a private national support organization for parents bereaved by infant death were contacted and asked to participate in the study. Participants filled out a questionnaire package including measures of PTSD (the Harvard Trauma Questionnaire), coping (the Coping Style Questionnaire), perceived social support (the Crisis Support Scale) and attachment (the Revised Adult Attachment Scale). Associations between variables were examined through the use of analyses of variance, correlation analyses and a regression analysis. RESULTS: We found an estimated PTSD prevalence of 12.3%. Type of loss (pre-, peri- or postnatal) did not have any effect on PTSD severity, but lower gestational age was associated with more symptoms. Time since the loss, female sex, attachment avoidance, attachment anxiety, emotion-focused coping, rational coping, feeling let down and social support satisfaction accounted for 42% of the variance in PTSD severity. CONCLUSIONS: The study highlights the long-term impact of infant loss and points to attachment, coping and social support as important contributors to the development and maintenance of posttraumatic stress symptoms.
16. Rudd, R. A., & D’Andrea, L. M. (2013). Professional Support Requirements and Grief Interventions for Parents Bereaved by an Unexplained Death at Different Time Periods in the Grief Process. International Journal of Emergency Mental Health, 15(1), 51-68.
Eastern Washington University, Cheney, WA, USA
The purpose of this qualitative phenomenological study examines the support needs and grief interventions professional and bereaved parents believed were helpful during different time periods in the grief process: the first 72 hours, first three to 14 days, and two weeks and beyond. Ten professionals from the following disciplines were interviewed: emergency communications, emergency medical technician, police, fireman, detective, social worker funeral director chaplain, peer support leader, and bereavement organization. Five parents and one grandparent bereaved by Sudden Infant Death Syndrome (SIDS) or Sudden Unexplained Death in Childhood (SUDC) were interviewed. This study identified 13 support need and grief interventions: contact support people, emotional and cognitive regulation, preliminary information on cause of death, time with deceased child, accommodate and advocate, human compassion and support, describe timeline and process, referrals and resources, affordable and easy access to services, communication and follow-up, community experience, professional mental health support, and memorialize. Recommendations are provided on ways to improve services to newly bereaved parents.
17. Smeesters, P. R. (2013). Don’t steal the body. The Lancet, 382(9906), 1704. [Correspondence]
Université Libre de Bruxelles, Gosselies, Belgium; and Murdoch Children’s Research Institute, Melbourne, Vic., Australia
Extract: an 11-month-old peaceful little baby… His paediatrician father found him dead in his bed on a winter morning. The ambulance arrived. The doctor proposed to take him to the hospital. The parents refused. Instead, they kept him in their arms all day through… Modern societies sometimes lose contact with basic human instincts. When facing death, especially those unexpected, doctors often want to organise, lead, analyse, and reassure…
18. Wender, E. (2012). Supporting the Family after the Death of a Child. Pediatrics, 130(6), 1164-1169. (Clinical Report). doi:10.1542/peds.2012-2772 [full text]
American Academy of Pediatrics, Elk Grove Village, IL, USA
The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to provide this support. Also, because of the pain of confronting the grief of family members, they may be reluctant to become involved. This statement gives guidelines to help the pediatrician provide such support. It describes the grief reactions that can be expected in family members after the death of a child. Ways of supporting family members are suggested, and other helpful resources in the community are described. The goal of this guidance is to prevent outcomes that may impair the health and development of affected parents and children.
19. Finlay, C. J., & Krueger, G. (2011). A Space for Mothers: Grief as Identity Construction on Memorial Websites Created by SIDS Parents. OMEGA-Journal of Death and Dying, 63(1), 21-44.
The Annenberg School for Communication, The University of Pennsylvania, Philadelphia, PA
In this article we conduct a textual analysis of memorial websites created by mothers who have experienced a loss due to sudden infant death syndrome (SIDS). Using an online Internet ethnographic approach, we reviewed a series of 20 sites in an attempt to analyze the motivations of the site creators as manifested in their online projects. We spent time on the sites, moving through all facets of them, following links, and experiencing them the way a visitor would encounter them. In this virtual exploration we uncovered personal narratives, community building, religious imagery, and numerous examples of social networking. We also analyzed guest books in order to understand who visits these sites and their reasons for doing so. We conclude that development of these sites are a process that helps some mothers in their grief and gives them a focus and activity that is helpful and perhaps healing. More importantly perhaps is the potential for community building and networking that this type of activity allows. As an extension of a real-world memorial such as a gravesite, a virtual mourning space provides more in the way of these types of communications. Our work suggests that memorial websites constructed by SIDS parents help in meaning and identity reconstruction after loss.
20. Lawrence, N. (2010). Care of Bereaved Parents after Sudden Infant Death. Emergency Nurse, 18(3), 22–25. doi: 10.7748/en2010.06.18.3.22.c7826
Emergency Department, Great Western Hospital, Swindon, UK
About 340 infants die suddenly and unexpectedly in the UK every year (Foundation for the Study of Infant Deaths 2005a), and one of the recommendations made in the Bristol Royal Infirmary inquiry final report (Kennedy 2001) was that infants found dead or moribund at home must be taken to emergency departments (EDs) for attempted resuscitation or further investigation. Sudden and unexpected infant death is one of the most stressful events that ED staff can experience, however, and they often lack training in this area even though they are keen to undertake such preparation (Levetown 2004, Ross-Adjie et al 2007). This article therefore discusses the guidelines on providing bereavement care to parents and best practice in EDs.
21. Ennis, M. (2010). Promary Care Ride. Family Medicine, 42(9): 653-5.
Department of Family Medicine and Community Health, University of Massachusetts Medical School, MA, USA
In this essay, the author describes an experience of attending to the death of a patient that reaffirmed the values that led him to family medicine.
22. Fraser, J. (2009). Why is Bereavement Support so Important? The Practising Midwife, 12(9), 4-5.
23. Worden, J. W. (2009). Sudden Infant Death Syndrome (SIDS). In Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner (4th ed). New York, New York Springer Publishing Company. Find in an Australian library
24. Barr, P., & Cacciatore, J. (2007). Problematic Emotions and Maternal Grief. Omega, 56(4), 331-348.
Royal Alexandra Hospital for Children, Sydney, Australia
The study was an empirical examination of the relation of personality proneness to “problematic social emotions”—envy (Dispositional Envy Scale), jealousy (Interpersonal Jealousy Scale), and shame and guilt (Personal Feelings Questionnaire-2)—to maternal grief (Perinatal Grief Scale-33) following miscarriage, stillbirth, neonatal death, or infant/child death. The 441 women who participated in the study were enrolled from the Website, e-mail contact lists, and parent support groups of an organization that offers information and support to bereaved parents. All four problematic emotions were positively correlated with maternal grief. Envy, jealousy, and guilt made significant unique contributions to the variance in maternal grief. Overall, time lapse since the loss and the four problematic emotion predispositions explained 43% of the variance in maternal grief following child bereavement.
25. Gold, K. J. (2007). Navigating Care after a Baby Dies: A Systematic Review of Parent Experiences with Health Providers. Journal of Perinatology, 27(4), 230–237. doi: 10.1038/sj.jp.7211676
Department of Family Medicine, University of Michigan Health System, Ann Arbor, MI, USA
INTRODUCTION: Health care providers are on the front lines of care when a baby dies, but there is no consensus about which behaviors are most helpful or harmful for families. MATERIALS AND METHODS: This systematic review of more than 1100 English-language articles from 1966 to 2006 addressed fetal and early infant loss and extracted information about interactions with health providers. RESULTS: Sixty-one studies, covering over 6000 parents, met criteria. Nurses were generally viewed as more emotionally supportive than physicians. Parents valued emotional support, attention to mother and baby and grief education. Avoidance, insensitivity and poor staff communication were the most distressing behaviors encountered. DISCUSSION: Interactions with health providers has profound effects on parents with perinatal losses. Grieving parents perceive many behaviors to be thoughtless or insensitive. Physicians and nurses may benefit from increased training in bereavement support.
26. Sidebotham, P., & Fleming, P. J. (eds). (2007). Unexpected Death in Childhood: A Handbook for Practitioners. Chichester, England ; Hoboken, NJ : John Wiley & Sons.
Especially: Chalmers, A. A Family’s Journey (pp 3-9); Stewart, A. & Dent, A. Supporting Families (pp 170-201).
27. Krueger, G. (2006). Meaning-making in the Aftermath of Sudden Infant Death Syndrome. Nursing Inquiry, 13(3), 163–171. doi: 10.1111/j.1440-1800.2006.00318.x
Simon Fraser University, Faculty of Arts and Social Sciences, Burnaby, British Columbia, Canada
The reconstruction of meaning in the aftermath of sudden infant death syndrome (SIDS) is part of the grieving process but has to date been poorly understood. Earlier theorists including Freud, Bowlby and Kübler-Ross provided a foundation for what occurs during this time using stage theories. More recent researchers, often using qualitative techniques, have provided a more complex and expanded view that enhances our knowledge of meaning reconstruction following infant loss. This overview of representative contemporary authors compares and contrasts them with the longstanding models that are being supplanted within the emerging field of thanatology. Understanding parental reactions within this new framework can help healthcare professionals in dealing with those affected by SIDS and provide a more empathic and sensitive approach to individual differences. Parents’ own accounts of their post-SIDS experience are consistent with these newer theories. Comprehending how parents cope and reconstruct their lives is an important element in providing appropriate psychological support services.
Academic recommended reading:
28. Stiffler, D., Cullen, D., Stephenson, E., Luna, G., & Hartman, T. D. (2015). When Baby Stops Breathing: Analysis of Mothers’ Interviews. Clinical Nursing Research. doi: 10.1177/1054773815619580
Indiana University School of Nursing, Indianapolis. IN, USA
Sudden unexplained infant death is responsible for 14% of Indiana’s infant mortality. The purpose of this qualitative research study was to describe mothers’ experiences when death of an infant occurred suddenly and unexpectedly. Field deputies or social workers interviewed mothers from central Indiana during the child-death team investigations. The Thematic Analysis Program from the Joanna Briggs Institute was used to analyze interview data. Sixteen de-identified interview cases were extracted, and a meta-aggregate method was conducted. The three synthesized themes were Extreme Emotional Shock, We Feel Like We’re to Blame, and Working Toward Moving On. Understanding these phenomena from mothers’ experience may assist in eliminating risks associated with infant deaths and inform nursing practice and policy.
29. Christiansen, D. M., Elklit, A., & Olff, M. (2013). Parents Bereaved by Infant Death: PTSD Symptoms up to 18 years after the Loss. General Hospital Psychiatry, 35(6), 605–611. doi: 10.1016/j.genhosppsych.2013.06.006
Department of Psychology, University of Aarhus, Demark
Objective Losing an infant or fetus late in pregnancy, during birth or in the first year of life is a potentially traumatic event for parents. However, little is known about the factors contributing to chronic posttraumatic stress reactions in this population. The present study examined chronic posttraumatic stress disorder (PTSD) symptoms and potential correlates in 634 mothers and fathers up to 18 years (M=3.4 years) after the death of their infant. Methods Members of a private national support organization for parents bereaved by infant death were contacted and asked to participate in the study. Participants filled out a questionnaire package including measures of PTSD (the Harvard Trauma Questionnaire), coping (the Coping Style Questionnaire), perceived social support (the Crisis Support Scale) and attachment (the Revised Adult Attachment Scale). Associations between variables were examined through the use of analyses of variance, correlation analyses and a regression analysis. Results We found an estimated PTSD prevalence of 12.3%. Type of loss (pre-, peri- or postnatal) did not have any effect on PTSD severity, but lower gestational age was associated with more symptoms. Time since the loss, female sex, attachment avoidance, attachment anxiety, emotion-focused coping, rational coping, feeling let down and social support satisfaction accounted for 42% of the variance in PTSD severity. Conclusions The study highlights the long-term impact of infant loss and points to attachment, coping and social support as important contributors to the development and maintenance of posttraumatic stress symptoms.
30. Davidson-Olsson, I. C. (2013). Sudden Infant Death Syndrome : Mothers’ Experiences of Parenting. Ph.D. Thesis, University of Hertfordshire, UK
Background: The death of a child has been found to have long term consequences for both individual and family functioning. This is particularly true for bereaved siblings who have been found to be at increased risk of developing mental health difficulties in later life. Literature on parental bereavement proposes that the parenting phenomenon, such as replacement child syndrome, subsequent child syndrome and the parenting paradox, which can emerge after the death of a child, may account for this. However, there is very little research on these labels of observed parenting phenomenon and, as a result, any hypothesis offered remains under elaborated. In addition, limited evidence suggests that, due to the sudden, unexpected and unexplained nature of the loss, SIDS parents are more likely to experience a greater degree of distress and adjustment difficulties than other perinatally bereaved populations. Given this, it could be hypothesised that SIDS parents may be likely to experience these parenting phenomena. Despite this, however, SIDS remains a neglected area of research. Aims: As a consequence of this research gap, the study aims to explore mothers’ experiences of parenting in their transition from being a parent unaffected by Sudden Infant Death Syndrome to a parent affected by Sudden Infant Death Syndrome. Methodology: Semi-structured interviews were conducted with seven mothers who had experienced an incident of Sudden Infant Death Syndrome. The interviews were then transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Results: Five master themes emerged from the analysis: ‘Channelling the Parent Within’, a naturally developing and responsive parenting style that is facilitated by internal mechanisms, such as flexibility and confidence; ‘Parenting Outside of Yourself’, a parenting style that develops in the aftermath of a SIDS event, which is characterised by self doubt and a reliance on external mechanisms such as reassurance and restriction; ‘Restoration Through You’, the restorative effect of the subsequent and surviving children, which allows vindication and re-establishes happiness; ‘The Bitter Restoration’, a restoration that encompasses internal knowledge and external evidence of loss, including a disrupted family composition and a continued awareness of existential threat; ‘A Disruptive Appreciation’, the development of a greater appreciation for the subsequent and surviving children that impacts discipline and incorporates indulgence. These, along with the subthemes contributing to them, are presented as a narrative account. Conclusion: The results imply that mothers who have experienced a SIDS event shift into a permissive and anxious style of parenting which is characterised by safety behaviours. A model of parenting in the aftermath of SIDS has been proposed in order to explain the underlying cognitions and processes which drive this behaviour and the factors which serve to maintain it. By doing this it is hoped that, when working with bereaved parents and siblings, clinicians will be better positioned to frame parenting practices and intervene at a cognitive level.
31. Kersting, A., & Kroker, K. (2010). Prolonged Grief as a Distinct Disorder, Specifically Affecting Female Health. Archives of Women’s Mental Health, 13(1), 27-28. doi:10.1007/s00737-009-0112-3
Department of Psychiatry, University of Münster, Münster, Germany
The authors discuss the negative effects of prolonged grief on women’s health. They note that intense, prolonged grief has been found to constitute a clinically significant behavioral and psychological syndrome or pattern that is associated with present distress or disability. They also highlight that women are especially affected by bereavement in the reproductive phase due to adverse pregnancy outcomes such as miscarriage, still birth and sudden infant death. They cite the pros and cons of establishing prolonged grief as a diagnostic entity.
32. McManus, V., Abel, S., McCreanor, T., & Tipene-Leach, D. (2010). Narratives of Deprivation: Women’s Life Stories around Maori Sudden Infant Death Syndrome. Social Science & Medicine, 71(3), 643-649. doi:10.1016/j.socscimed.2010.04.028
Whariki Research Group, Massey University, Auckland, New Zealand
Maori babies in Aotearoa/New Zealand die of Sudden Infant Death Syndrome (SIDS) at over five times the rate of their non-Maori peers. Research and health promotion around modifiable risk factors has produced only a small improvement in this situation since the mid-1990s. This paper reports on life story interviews, conducted between 2002 and 2004, with nineteen mothers of Maori infants who have died of SIDS. Potential participants were identified and accessed with the support of the national Maori SIDS Prevention Programme care-workers, in both urban and rural locations throughout both main islands of New Zealand. The paper articulates, in a thematic fashion, the bereaved mothers’ experiences of alienation, marginalisation and exclusion, as a testimony of lives lived under conditions of serious deprivation in an affluent society. Constructing these experiences as non-modifiable risk factors hinders the development of policy and health promotion interventions that could improve the conditions in which Maori mothers live and raise their babies. It is argued that new approaches that target those whose lives are described here and build on the WHO Social Determinants of Health framework are vital to the efforts of New Zealanders to attain health equity and stem the tide of devastating and preventable loss of Maori babies to SIDS.
33. Blake, D. (2009). Review. Sudden Infant Death Syndrome: Learning from Stories about SIDS, Motherhood and Loss. Practising Midwife, 12(1), 41-41.
34. Lang, S. (2008). Bonds of Bereavement. Journal of the Association for Research on Mothering, 10(1), 185-198.
Harvard University, USA
The article describes ways mothers of infants who died of Sudden Infant Death Syndrome (SIDS) support each other and provides an analysis of why this intragroup caregiving is healing. Accordingly, bereaved mothers come together at support meetings, on-line groups and SIDS conferences to make up a diverse community of female survivors. It states that the said bonds of bereavement are a rejection of western individualism.
35. Clarke, E., & McCreanor, T. (2006). He wahine Tangi Tikapa…: Statutory Investigative Processes and the Grieving of Maori Families who have Lost a Baby to SIDS. Kotuitui: New Zealand Journal of Social Sciences, 1(1), 25-43.
The University of Auckland, New Zealand
Among Maori families, the loss of an infant to SIDS is a terrible burden that reverberates through social networks for years after the event. The statutory services that investigate the death have a huge impact on such processes. This qualitative investigation studied the experiences of whanau following a SIDS death by reporting narrative data, gathered from families, police officers, coroners, and pathologists. Thematic analyses revealed multiple domains of high significance—police actions, post-mortem, and coronial process—to bereaved whanau, and this paper considers their implications for grieving, service provision, and social justice.
36. Vennemann, M. T., Rentsch, C., Bajanowski, T., & Zimmer, G. (2006). Are Autopsies of Help to the Parents of SIDS Victims? A Follow-up on SIDS Families. International Journal of Legal Medicine, 120(6), 352-354.
Institute of Legal Medicine, University of Münster, Germany
Little is known about what bereaved parents feel about the autopsy performed on their child. A multi-centre case control study of sudden infant death syndrome (SIDS) victims was carried out in Germany between 1998 and 2001, in which all infants had been autopsied. We performed a follow-up study 4-7 years after the parents had lost their child. A total of 141 parents filled in the questionnaire, which were sent to them by the study centre. Of these, 71% had had another child after the SIDS/sudden unexpected death in infancy. The majority (83%) of the participating parents found the autopsy helped them to cope better with the death. A large proportion (46%) did not want any professional help after the death, and 55% did not wish to have any contact with a self-help group. We conclude that the autopsy is helpful to the majority of bereaved parents. Professional help and self-help groups should be offered to the parents even if the majority in our study did not want to use either.
37. Gurbutt, D. J. (2005). Making and Re-making Motherhood : Maternal Grief following Sudden Infant Death Syndrome. Ph.D. Thesis: Lancaster University, UK.
Last reviewed: 18/11/24