Expert Insights: Grief Support After Preventable Infant Death
Project IMPACT convenes, connects and supports communications between SUID/SIDS professionals and programs. In an effort to recognize the contributions of our professional colleagues, Project IMPACT occasionally invites a featured professional to respond to questions regarding a topic of importance. Today’s topic addresses the challenges of providing grief services after a “preventable” infant death. Our featured professional is Dr. Sarah Kye Price.
Sarah Kye Price
School of Social Work
Virginia Commonwealth University.
Now that so many more infant deaths are labeled “preventable”, what is the impact on grief services for families?
When I first read this question as posed, I immediate was taken back to the bereavement support situations I wrestled with alongside families who encountered this notion of preventability. For any of us…when anyone we love dies…we wrestle with the “would have, could have, should have…” dilemmas. Now, add to this human angst the fact that the death is that of a child for whom we feel entirely responsible, whether or not she or he was in our care when the death happened. Then, add to this internalized struggle a formal document that you look at and read over and over and over again which says: “preventable” every time you see it. What we have in the making is the perfect storm of guilt and grief and blame for bereaved parents, the vast and overwhelming majority of whom were doing the absolute best they could to parent and care for their children. It is possibly one of the most traumatic situations I can imagine, because of its intense internal struggle and the lack of social support that surrounds such a diagnosis.
Is the grief process different?
When I teach crisis intervention, I often talk to my students about the notion of “disequilibrium” that happens during a crisis. I would like to pose that bereavement professionals conceptualize this situation as having two phases: first as crisis, and then later as grief. Crisis disrupts our sense of balance, fairness, and rightness. Its suddenness is jarring, its intensity overwhelms our ability to do the things we need to do every day, and it is often marked by shock, anger, guilt/blame. People feel singled out and separated from the rest of the world when in crisis. The relational grief process over the child who died in labeled “preventable” deaths is very likely to be delayed during this more intense disequilibrium from shock, blame, guilt, and anger intensified by the diagnostic label.
Should grief services be offered differently?
Yes, I believe so. Approaching a family in this situation with a list of “typical” grief symptoms and services may feel very out of place. Responding to the family using a crisis stabilization framework where psychological first-aid is provided until some sense of equilibrium can be restored makes more sense. No one wants to attend a support group for a death they are still internalizing as preventable. So, I don’t think we should press that as a front-line strategy. We cannot begin to touch on the relational dynamics of grief…even though they are so important, eventually…when the parent(s) are in crisis. We should be present, persistent, help them articulate their emotional responses and slowly rebuild their social support system and regain trust in themselves as person by person accepts them as they are. We cannot take away guilt, but we can urge them to see their intentions of love, parenting, and caregiving as equal “truth” alongside the label. It may help to have them write these positive attributes down as a thought-replacement exercise when emotions surface over the diagnostic label. When ready to view the loss beyond the label, we can link them to additional support services, such as groups.
What is your best advice for the grief support professional?
Simply put: avoid the urge to “fix it” or to dismiss the label. Let them know that many bereaved parents struggle with the idea of preventability no matter how the death is labeled. Expect crisis reactions to occur when the final diagnosis is presented, and be the calm presence a family may need during their disequilibrium. Conduct a home visit if at all possible and, in doing so, convey the message that you are a presence of support in their own world & surroundings, meeting them exactly where they are at without judgment. For those who engage in both bereavement support and risk-reduction education, keep your roles distinct in the early stages and offer up information at a later point when the family is ready (for example, if parents ponder a subsequent pregnancy).
About Sarah Kye Price
She received her PhD from Washington University in St. Louis and her MSW from Syracuse University. She currently teaches courses in direct social work practice and crisis intervention/planned short-term treatment in the MSW program, as well as research methods and program evaluation in the Doctoral program. Her prior direct practice experiences include work as a Grief Therapist for Life Transitions Center in Buffalo, NY and the coordinator of SIDS family support services in both Western New York and the St. Louis, Missouri metro region.
Dr. Price’s research and publications focus on the socio-cultural and psychosocial experiences of reproductive and perinatal loss, as well as women’s mental health within low-income communities disproportionately affected by fetal and infant mortality. She is currently funded through the National Institutes for Health via the VCU Center for Clinical and Translational Research K12 Scholar program (UL1RR031990), working in partnership with maternal and child health home visiting programs in Virginia to implement and evaluate the Enhanced Engagement model of MCH home visiting which integrates mental health support into existing health promotion programs for pregnant and parenting women in low-income communities. Her vision is to create a responsive tier of services that integrates bereavement support and mental health promotion fluidly…and without stigma…into existing services supporting pregnant and parenting women and families. Dr. Price is the Past President of the Pregnancy Loss and Infant Death Alliance (PLIDA), a national non-profit organization whose mission is to support the work of professionals who support grieving families.
Research in the areas of Sudden and Unexpected Infant/Child Death and Pregnancy Loss
Sudden Infant Death
Moon RY, Oden RP, Joyner BL, Ajao TI
Qualitative Analysis of Beliefs and Perceptions about Sudden Infant Death Syndrome in African-American Mothers: Implications for Safe Sleep Recommendations
J Pediatr. 2010 Mar 18. [Epub ahead of print]
Goldberg Center for Community Pediatric Health, Children's National Medical Center, Washington, DC; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC.
OBJECTIVE: To investigate, by using qualitative methods, perceptions about sudden infant death syndrome (SIDS) in African-American parents and how these influence decisions. STUDY DESIGN: Eighty-three mothers participated in focus groups or individual interviews. Interviews probed reasons for decisions about infant sleep environment and influences affecting these decisions. Data were coded, and themes were developed and revised in an iterative manner as patterns became more apparent. RESULTS: Themes included lack of plausibility, randomness, and vigilance. Many mothers believed that the link between SIDS and sleep position was implausible. Because the cause of SIDS was unknown, they did not understand how certain behaviors could be defined as risk factors. This confusion was reinforced by perceived inconsistency in the recommendations. Most mothers believed that SIDS occurred randomly ("God's will") and that the only way to prevent it was vigilance. CONCLUSIONS: Many African-American mothers may not understand the connection between SIDS and sleep behaviors or believe that behavior (other than vigilance) cannot affect risk. These beliefs, if acted on, may affect rates of safe sleep practices. Efforts to explain a plausible link between SIDS and safe sleep recommendations and to improve consistency of the message may result in increased adherence to these recommendations. Copyright © 2010 Mosby, Inc. All rights reserved.
1. Greenwood DC, Alwan N, Boylan S, Cade JE, Charvill J, Chipps KC, Cooke MS, Dolby VA, Hay AW, Kassam S, Kirk SF, Konje JC, Potdar N, Shires S, Simpson N, Taub N, Thomas JD, Walker J, White KL, Wild CP
Caffeine intake during pregnancy, late miscarriage and stillbirth
Eur J Epidemiol. 2010 Mar 21. [Epub ahead of print]
Caffeine is a commonly consumed drug during pregnancy with the potential to affect the developing fetus. Findings from previous studies have shown inconsistent results. We recruited a cohort of 2,643 pregnant women, aged 18-45 years, attending two UK maternity units between 8 and 12 weeks gestation from September 2003 to June 2006. We used a validated tool to assess caffeine intake at different stages of pregnancy and related this to late miscarriage and stillbirth, adjusting for confounders, including salivary cotinine as a biomarker of smoking status. There was a strong association between caffeine intake in the first trimester and subsequent late miscarriage and stillbirth, adjusting for confounders. Women whose pregnancies resulted in late miscarriage or stillbirth had higher caffeine intakes (geometric mean = 145 mg/day; 95% CI: 85-249) than those with live births (103 mg/day; 95% CI: 98-108). Compared to those consuming < 100 mg/day, odds ratios increased to 2.2 (95% CI: 0.7-7.1) for 100-199 mg/day, 1.7 (0.4-7.1) for 200-299 mg/day, and 5.1 (1.6-16.4) for 300+ mg/day (P (trend) = 0.004). Greater caffeine intake is associated with increases in late miscarriage and stillbirth. Despite remaining uncertainty in the strength of association, our study strengthens the observational evidence base on which current guidance is founded.
2. Wang L, Wang ZC, Xie C, Liu XF, Yang MS
Genome-Wide Screening for Risk Loci of Idiopathic Recurrent Miscarriage in a Han Chinese Population: A Pilot Study
Reprod Sci. 2010 Mar 19. [Epub ahead of print]
The etiology of recurrent miscarriage (RM) is extremely heterogeneous, including genetic, immunologic, anatomic, endocrinological, and infectious anomalies. About 50% of RM is unexplained or poorly understood, which is called idiopathic recurrent miscarriage (IRM). The primary aim of this study was to identify the genetic loci that might be susceptible to IRM. Forty-four Han Chinese patients with IRM during the first trimester of their pregnancies and 44 healthy sex- and ethnic-matched controls were enrolled in this study. A case-control and genome-wide study was performed and 430 polymorphic microsatellite markers were analyzed. Three loci, 6q27 (D6S446, P = .028), 9q33.1 (D9S1776, P = .037), and Xp22.11 (DXS1226, P = .008), significantly associated with IRM were found. This work identified 3 genetic regions that might harbor genes predisposed to IRM and provided new insights for future genetic and etiological study of IRM. Further study is required to confirm it.
National Institute for Child Health and Human Development & National Institutes of Health
To review the research that NICHD & NIH fund in the areas of Sudden Unexpected Infant Death, SIDS, Stillbirth and related issues, go to NIH RePORTER (Research Portfolio Online Reporting Tool Expenditures & Results), a searchable database of federally funded research projects conducted at universities, hospitals, and other research institutions.
NICHD has also put research into practice with the Back-to-Sleep Campaign. Data from the National Infant Sleep Position Study, developed by NICHD to examine sleep practices and factors associated with adherence to the back-to-sleep recommendations, are available from 1992 through 2008. The NISP study has conducted an annual telephone survey of nighttime caregivers of infants less than 8 months of age in 48 states to assess infant care practices and dissemination of the American Academy of Pediatrics' recommendation regarding infant sleep position and related care practices.
NICHD supports a Stillbirth Research Collaborative Network, consisting of five research centers around the country and an independent data center to collect and analyze statistics on stillbirth. The research and statistical centers collaborate with the NICHD to design studies to determine the causes of stillbirth. The network will also seek to develop standardized research guidelines for reporting and investigating stillbirths.
Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention’s Pregnancy Risk Assessment Monitoring System (PRAMS) is an ongoing state and population-based surveillance system designed to collect information on self-reported maternal behaviors and experiences that occur around the time of pregnancy. PRAMS generates statewide estimates of perinatal health indicators among women who recently delivered a live infant. Each participating state uses a standardized data collection method developed by CDC. PRAMS staff in each state collect data with mail and telephone questionnaires. Because PRAMS data are state and population-based, findings are generalizable to an entire state’s population of women delivering a live-born infant. Several states have included a question regarding sleep position in their surveys.
PRAMS data may be used by states to advocate for policy changes that will improve maternal and child health. Georgia used PRAMS data to influence a change in infant sleep position (2003). Read about this and other state strategies in the report, Using Surveillance To Promote Public Health: Examples from the Pregnancy Risk Assessment Monitoring System (PRAMS).
CDC has also supported the collection of information from death scene investigation as a way to learn more about Sudden Unexplained Infant Death. Studies have shown that since 1999, some deaths previously classified as SIDS are now classified as due to accidental suffocation or unknown/unspecified cause. This finding suggests that changes in reporting of cause of death may account for part of the decrease in SIDS rates. CDC launched an initiative in 2004 to improve the investigation and reporting of SUID, in collaboration with other federal agencies and organizations representing medical examiners, coroners, death scene investigators, emergency medical personnel, law enforcement officials, forensic nurses, SIDS researchers, infant death review experts, and parents who have experienced a death of an infant. As part of this effort, on March 1, 2006, CDC released the Sudden, Unexplained Infant Death Investigation (SUIDI) Reporting Form for state and local use in infant death scene investigations. CDC and the expert team also developed a comprehensive training curriculum and materials for infant death scene investigations.
Maternal and Child Health Bureau
As part of the MCHB Healthy Child Care America initiative, the American Academy of Pediatrics designed a study to test the effectiveness of their ongoing efforts to educate child care providers, health professionals, and others about safe sleep practices in child care settings. Four states (that met specific criteria) were selected (CA, LA, MT, PA) to receive state specific train-the-trainer instruction for the care of infants under the age of 12 months from Dr. Rachel Moon and colleagues. Once state regulatory agents, child care consultants and resource referral staff were trained, the regulatory agents visited the identified programs (unannounced) to observe the extent to which safe sleep practices and policies are in place. You can view the results of this study here.
National Center for Health Statistics
The National Center for Health Statistics, a division of the U.S. Centers for Disease Control and Prevention (CDC), is the nation’s principal health statistics agency. NCHS compiles statistical information to guide actions and policies to improve the health of people living in the United States.
Selected key findings for the most recent final mortality data for the United States include information on infant mortality. The findings come from information reported on death certificates completed by funeral directors, attending physicians, medical examiners, and coroners.
First Candle/SIDS Alliance
First Candle funds research at medical institutions throughout the U.S. and Canada to further the understanding of SIDS, Stillbirth and other causes of infant death. The medical research program is conducted under the auspices of the Medical and Scientific Adivisory Council, an internationally recognized body of senior level pediatric scientists.
CJ Foundation for SIDS
The CJ Foundation for SIDS funds research in the areas of SIDS and SUDC (Sudden Unexplained Death in Childhood).