Research

Welcome to Babies Remembered and Wintergreen Press
The Web Site of Sherokee Ilse
Bereaved Parent, International Speaker and Author of
Empty Arms:Coping with Miscarriage,Stillbirth, and Infant Death

and many other books, including Miscarriage: A Shattered Dream


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Research

 

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Research Study:
http://www.surveymonkey.com/s.aspx?sm=looH_2b6MxKaw0s0yPl5zE0w_3d_3d

This study is about how parents cope with pregnancy and infant loss and the use of internet support sites. We understand that losing a pregnancy or baby can be an extremely stressful event, and are very sorry for your loss. We know it may be hard to think about filling out a research survey at this time, but we are trying to develop internet programs to help future parents. All of the information you provide is completely confidential.

Who is Doing the Study and What is it For?
The study is conducted by researchers at the University of Michigan in Ann Arbor, Michigan in the United States. We are trying to understand women’s experiences with a pregnancy loss or loss of a baby and how women use on-line message boards after a loss. This will help us to design on-line programs to help parents cope with this difficult event.

What are the Risks of Completing the Survey?
The main risk to mothers is simply that remembering a loss can be emotionally difficult. To protect mothers who participate, this survey is confidential. In addition, this study, like all research studies, was reviewed and approved by the Institutional Review Board at the University of Michigan (HUM00023103). You may choose not to answer a question or may stop the survey at any point. Message board staff have given us permission to post this survey, but they will not see any of your individual answers.

What are the Benefits?
There are no direct benefits to you from completing the survey, but your responses will help us to develop programs for other parents who have similar losses in the future. It is estimated the survey will take about 10 minutes to complete.

Can I Contact the Researcher or the University of Michigan if I have Concerns or Questions about the Study?
Yes. You may email the Primary Investigator at ktgold@umich.edu (University of Michigan, Department of Family Medicine, Department of Obstetrics & Gynecology) or you may contact the University of Michigan Institutional Review Board at 734-763-4768.

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Research Study - what helps and does not help newly bereaved families in the hospital?

Was your loss over 20 weeks and less than 2 years ago?  Maybe you would like to participate in a doctoral study (questionnaire is about 20-30 minutes online) being conducted by an L & D nurse.  The purpose of the study is to determine what helps and does not help newly bereaved families in the hospital.  

Peggy writes: I have been a Labor and Delivery nurse for 15 years and now doctoral candidate at West Virginia University. In my work, I have been with many women as they experienced a stillbirth loss. I came to wonder if what we did at the time, in the hospital, if it was helpful. Could it even be harmful? We can only find out from women who know. Would you be willing to  to help me help other women as they go through their loss? Tell me your story - of those things that were offered, what was helpful? what was not helpful? If your pregnancy was greater than 20 weeks gestation and your loss occurred in the last 2 years, would you go to the website below. The survey is online and will take about 20-30 minutes to complete. It can be found at:


www.surveymonkey.com/plf

Thank you,
Peggy Lambert Fink, MSN, FNP-C
plambert@wvutech.edu

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Research Study - medical bad news delivery and the communications between patients and care providers about their diagnosis

I am a bereaved parent who had a stillbirth three years ago. I am currently co-conducting a survey about medical bad news delivery and the communications between patients and care providers about their diagnosis. I am specifically hoping to reach parents who have had a stillbirth, neonatal death (death of a child within 28 days of birth) or a pregnancy loss.

We are hoping to learn more about this kind of communication and offer insights to care-providers about the effects of these interactions. Data collected from this confidential survey will be used for completion of a course project in the masterís program at San Francisco State University. The survey is confidential and should take approximately 25 minutes to complete.

If you have any questions, I would be happy to answer them. I can be reached by email at spullen@sfsu.edu.

You can download a copy of the survey announcement (format 1, format 2), in case you would like flyers to post or circulate.

I also have hard copies of the surveys and if you send me an email with the street address, I would be happy to mail them to you.

I send my sincere thanks for considering helping get the word out about this study,

Suzanne Pullen
spullen@sfsu.edu
www.surveymonkey.com/nld

More about my story at: www.sfgate.com/pregnancyafterloss

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Mothers’ perceptions of fetal movement are key to improving perinatal outcomes.

Two recent articles [check pub date] by ISA Board members Dr Frederik Frøen, Dr Babill Stray-Pedersen, Dr Ruth Fretts and Vicki Flenady, RN, and their colleagues, Alexander E.P. Heazell, Julie Victoria Holm Tveit, Per E. Børdahl, and Eli Saastad, point out that mothers’ perception of fetal movements is the oldest and most commonly used method to assess fetal well-being, a method to which almost all pregnant women adhere. The method seems to work--women who seek medical attention because of their perceptions of decreased fetal movements do indeed have a higher risk of stillbirth, fetal growth restriction, fetal distress, preterm birth, and other serious perinatal problems.  Improved awareness of fetal movements has been associated with improved perinatal outcomes.

Unfortunately, the “holy grail”—a clear and proven “alarm limit” of fetal movements, below which the alarm must be sounded—has proven elusive: no proposed definitions of decreased fetal movements have ever been proven to be superior to mothers’ own perceptions in terms of identifying risk to the fetus. There is currently not enough research evidence on the optimal management of women who report decreased fetal movements.  No randomized controlled trials have been performed. Given the lack of data, the research team advises that the use of specific limits developed for fetal movement counting should be discouraged. This does not mean fetal movement monitoring should not be used. Indeed, the strong associations between decreased fetal movement and adverse outcomes suggest several steps be taken when decreased fetal movement is perceived by the mother. These steps include confriming that movements are decreased through consultation and prviding guidance to the mother about how best to count movements if necessary. If maternal concern remains, the exclusion of both acute and chronic conditions associated with decreased fetal movements should be undertaken including a nonstress test and an ultrasound scan.

For more information, please see the full article at [source Semin Perinatol 32:243-246 and Semin Perinatol 32:307-311]

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Trends in intrapartum fetal death in Ireland, 1979-2003

This 200x study, authored by Walsh, McMenamin, Foley, Daly, Robson, and Geary, was undertaken to analyze trends in intrapartum fetal death and rates of perinatal autopsy over a 25-year period in Dublin, Ireland. Results of this long-term study show that there was a significant decrease in the rate of intrapartum fetal death in the period studied. This primarily resulted from a reduction in deaths attributable to intrapartum hypoxia. The study also found that rates of perinatal autopsy had fallen significantly during the same period, a matter of concern for researchers in particular[SHL1] .

Walsh CA, McMenamin MB, Foley ME, Daly SF, Robson MS, Geary MP. “Trends in intrapartum fetal death, 1979-2003.” Am J Obstet Gynecol. 2008 Jan;198(1):47 e1-7.

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Binge drinking in pregnancy and risk of fetal death

Drinking is considered binge drinking when there is an intake of five or more drinks on one occasion. A 200x study by Strandberg-Larsen, Nielsen, Grønbœk, Andersen, Olsen, and Andersen examined whether the frequency and timing of binge drinking episodes during the first 16 weeks of pregnancy increase the risk of fetal death. 89,201 women from 1996 to 2002 participated in this study, and results showed that while binge drinking three or more times during pregnancy is associated with an increased risk of stillbirth, neither the frequency nor the timing of binge drinking was associated with an increased risk of spontaneous abortion.

Strandberg-Larsen K, Nielsen NR, Gronbaek M, Andersen PK, Olsen J, Andersen AM. “Binge drinking in pregnancy and risk of fetal death.” Obstet Gynecol. 2008 Mar;111(3):602-9.

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Study in Indonesia finds multiple-nutrient supplementation does better than iron and folic acid alone in reducing neonatal deaths

In developing countries, nutrient supplementation for pregnant women is generally restricted to provision of iron and folic acid. This 200x study led by Shankar compared the effect of maternal supplementation with multiple micronutrients to that of supplementation with iron and folic acid alone, on fetal loss and infant death. The study randomly assigned 262 midwives to distribute supplements to 31,290 pregnant women. Results showed that multiple micronutrients can reduce the incidence of early infant mortality and other adverse obstetric outcomes.

Supplementation with Multiple Micronutrients Intervention Trial (SUMMIT) Study Group, Shankar AH, Jahari AB, Sebayang SK, Aditiawarman, Apriatni M, Harefa B, Muadz H, Soesbandoro SD, Tjiong R, Fachry A, Shankar AV, Atmarita, Prihatini S, Sofia G. “Effect of maternal multiple micronutrient supplementation on fetal loss and infant death in Indonesia: a double-blind cluster-randomised trial.” Lancet. 2008 Jan 19;371(9608):215-27.

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Viruses and other infections—a possible cause of some stillbirths?

The exact causes of almost half of all stillbirths are unknown. Recent evidence suggests that some viruses may be a contributing factor, either alone or in combination with other infections. This 200x article by Rawlinson, Hall, Jones, Jeffery, Arbuckle, Graf, Howard, and Morris describes some of the causes of stillbirth including clinical, epidemiological, viral and other infectious agents causes. It summarizes some of the recently-developed molecular techniques used to detect the presence of any infection in the placenta and/or stillborn baby. Finally, the article describes whether the actual infectious agent caused death or whether there may be other causes. Having a correct diagnosis is a great benefit to parents in their decision-making for future pregnancies.

Rawlinson WD, Hall B, Jones CA, Jeffery HE, Arbuckle SM, Graf N, et al. “Viruses and other infections in stillbirth: what is the evidence and what should we be doing?” Pathology. 2008 Feb;40(2):149-60.

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New article/study regarding 'Seeing and holding stillborns immediately after birth"

Line Christoffersen (ISA Parent Committee member) from Norway, has co-authored an important article:
“Helping a woman meet her stillborn baby while it is soft and warm” (together with Ingela Rådestad). The article reports that parents who have both seen and held their stillborn baby during the first 30 minutes after birth describe this as the most valuable time they had with their baby. But, not all parents are given this opportunity. Following stillbirth, parents are in a state of shock, and asking whether they want to see and hold their baby may suggest that it is not obvious that they would want to do so. This creates doubt, and for many the spontaneous reaction may be to reply with a refusal they later regret. To encourage parents to see and hold the baby immediately after birth, parents need to hear how (based on the health professionals' experience) the baby will look when it is newborn, and how it will change over the succeeding days. Parents need advice about what to do immediately after the birth of their child (take photos and see and hold the baby).

The article, published in the 4 September 2008 British Journal of Midwifery, Vol. 16, Iss. 9, can be found at http://www.intermid.co.uk/cgi-bin/go.pl/library/article.cgi?uid=30885;article=BJM_16_9_588_591

 

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Last modified: April 12, 2012