Miscarriage & Perinatal Loss Questionnaire
How Did Ritual Offered/Not Offered at the Time of Your Loss Assist You With the Grieving Process?
This blog site provides background information for those interested in completing the survey at http://pregnancylosssurvey.questionpro.com. You are also invited to leave comments on this blog after completing the survey.
Current research has shown that offering parents a ceremony, service or ritual at the time of loss helps parents with their grief. Yet many parents are left alone with minimal support when their baby dies, either through miscarriage, stillbirth or within the first weeks of life. With your answers to this brief, 10 minute questionnaire, we hope to better understand what is helpful for parents who suddenly lose their baby. We are interested in hearing from both mothers and fathers in this study; everyone experiences grief differently and this research hopes to give voice to parents marked by this unique kind of death. Adults of child-rearing age are invited to complete the survey. It does not matter how long ago you suffered the tragic loss of your baby, even if it occurred 40 years ago, you are still invited to complete the survey.
Your privacy will be fully respected; any information collected will not be shared outside of the immediate research team. Your information will not be shared with third parties at any point whatsoever.
Definition of Terms
Miscarriage – Less than 20 weeks gestation or weight of less than 500g
Stillbirth – Death of a fetus anytime after the 20th week of gestation
Perinatal – 22 weeks gestation up to 7 days after birth
Neonatal – Early – before 7 days of life,
Late – after 6th day until 28th day
Perinatal Loss – Includes fetal death (early, late or stillbirth) and neonatal death within the first 28 days of life.
Research Study into Pregnancy Loss: This blog gives background information and links to a pregnancy/neonatal loss questionnaire. As a researcher into pregnancy loss, I am aware that I tread on holy ground as you share the pain of losing your baby. I am deeply grateful that you are willing to consider completing the research questionnaire and I invite you to post further comments on your experience of the survey or about the loss of your baby.
This study has been approved by the Ethics Research Board of St. Joseph's Healthcare Hamilton.
This blog will act as an information site regarding a research study into "The Use of Ritual at the Time of a Pregnancy Loss" This study has been approved by the Ethics Research Board of St. Joseph's Healthcare Hamilton. Complete information regarding the research is listed below.
To Complete the Questionnaire, please visit
http://pregnancylosssurvey.questionpro.com/
To Complete the Questionnaire, please visit
http://pregnancylosssurvey.questionpro.com/
Researcher Profile
- Lucinda Landau
- I'm the Graduate Resident Chaplain for St. Joseph's Healthcare Hamilton and I'm conducting research into: "The Use of Ritual at the Time of a Pregnancy Loss". I will be collecting responses to the questionnaire until the spring of 2011.
Research Questionnaire Information
Pregnancy/Neonatal Loss Research Study
Information Sheet
Local Principal Investigator: Mike Chow, Director ,
Spiritual Care Department
Principal Investigator: Lucinda Landau, Graduate Resident Chaplain, Spiritual Care Department
St. Joseph’s Healthcare Hamilton
Invitation to Participate
You are invited to participate in a research study conducted by Graduate Resident Chaplain, Lucinda Landau, because of your recent Pregnancy Loss (Miscarriage, Stillbirth) or Neonatal Loss. This is a student research project conducted under the supervision of Michael Chow, Director of the Spiritual Care Department. The study will help the student learn more about the topic area and develop skills in research design, collection and analysis of data, and writing a research paper.
In order to decide whether or not you want to be a part of this research study, you should understand what is involved and the potential risks and benefits. This sheet gives detailed information about the research study.
Why is this research being done?
Researchers have determined that a ritual (memorial service, baby naming service, prayers, etc.) offered at the time of a pregnancy loss (miscarriage, stillbirth) or neonatal loss does assist parents in their grieving process. Ritual improves social acceptance of the loss; the more social acceptance parents feel around their loss, the more they are able to experience the full range of emotions that come with the sudden death of their baby. This study will explore what parents have actually been offered in the way of a memorial service or ritual at the time of such a loss and how this was helpful or not helpful for them.
What is the purpose of this study?
To determine what kind of rituals are being offered at the time of a pregnancy/neonatal loss, to determine which health care professional is assisting with the rituals and to determine how helpful or not helpful parents find the ritual.
What will my responsibilities be if I take part in the study?
You are being asked to visit a website and complete a questionnaire and submit it to the Principle Investigator, Lucinda Landau.
What are the possible risks and discomforts?
There are no known risks associated with this research, although some participants may experience some emotional distress or release in remembering the circumstances of their pregnancy/neonatal loss.
How many people will be in this study?
There will be approximately 200 people in this study although the online nature of this research can accomodate a larger response rate. It has been determined that useful information can be gleaned if only 200 people respond.
What are the possible benefits for me and/or for society?
We cannot promise any personal benefits to you from your participation in this study. We hope to demonstrate that rituals are helpful at the time of a pregnancy/neonatal loss and how the process of offering rituals can be improved based upon parent's actual experience of a loss. Bonding with other parents is considered significant in the grieving process of parents. This study will investigate the extent to which parents have connected with other similar parents and how effective this has been for them.
There is no anticipated benefit to you from your participation in this study.
If I do not want to take part in the study, are there other choices?
Yes, you are not required to visit the website and complete the questionnaire.
What information will be kept private?
Your data will not be shared with anyone except with your consent or as required by law. Your personal information such as your name will not be kept with any data collected. Individual questionnaires will be identified by number only; this list will not be linked with individual names. All data will be kept in a securely locked office or stored in a secure server with an encrypted hard drive for 10 years. If the results of the study are published, your name will not be used and no information that discloses your identity will be released or published without your specific consent to the disclosure.
Can participation in the study end early?
If you volunteer to be in this study, you may withdraw at any time. You have the option of removing your data from the study. You may also refuse to answer any questions you don’t want to answer and still remain in the study. The investigator may withdraw you from this research if circumstances arise which warrant doing so.
Will I be paid to participate in this study?
No, there is no payment for involvement in this study.
Will there be any costs?
There are no individual costs associated with participating in this study.
Legal Rights
By participating in this study, it does not mean that you waive any legal rights you may have under the law, nor does it mean that you are releasing the investigator(s), institution(s) from their legal and professional responsibilities.
If I have any questions or problems, whom can I call?
Pastoral support is available to you if you feel you need it after completing the questionnaire. You may contact Lucinda Landau, Graduate Resident Chaplain at the Spiritual Care Department, St. Joseph’s Healthcare Hamilton: 905.522.1155, ext 33253.
If you have any questions regarding your rights as a research participant and for patients of St. Joseph’s Healthcare Hamilton, please contact:
Office of the Chair of the Research Ethics Board, St. Joseph's Healthcare Hamilton, 905-522-1155 Ext. 33537.
Information Sheet
Local Principal Investigator: Mike Chow, Director ,
Spiritual Care Department
Principal Investigator: Lucinda Landau, Graduate Resident Chaplain, Spiritual Care Department
St. Joseph’s Healthcare Hamilton
Invitation to Participate
You are invited to participate in a research study conducted by Graduate Resident Chaplain, Lucinda Landau, because of your recent Pregnancy Loss (Miscarriage, Stillbirth) or Neonatal Loss. This is a student research project conducted under the supervision of Michael Chow, Director of the Spiritual Care Department. The study will help the student learn more about the topic area and develop skills in research design, collection and analysis of data, and writing a research paper.
In order to decide whether or not you want to be a part of this research study, you should understand what is involved and the potential risks and benefits. This sheet gives detailed information about the research study.
Why is this research being done?
Researchers have determined that a ritual (memorial service, baby naming service, prayers, etc.) offered at the time of a pregnancy loss (miscarriage, stillbirth) or neonatal loss does assist parents in their grieving process. Ritual improves social acceptance of the loss; the more social acceptance parents feel around their loss, the more they are able to experience the full range of emotions that come with the sudden death of their baby. This study will explore what parents have actually been offered in the way of a memorial service or ritual at the time of such a loss and how this was helpful or not helpful for them.
What is the purpose of this study?
To determine what kind of rituals are being offered at the time of a pregnancy/neonatal loss, to determine which health care professional is assisting with the rituals and to determine how helpful or not helpful parents find the ritual.
What will my responsibilities be if I take part in the study?
You are being asked to visit a website and complete a questionnaire and submit it to the Principle Investigator, Lucinda Landau.
What are the possible risks and discomforts?
There are no known risks associated with this research, although some participants may experience some emotional distress or release in remembering the circumstances of their pregnancy/neonatal loss.
How many people will be in this study?
There will be approximately 200 people in this study although the online nature of this research can accomodate a larger response rate. It has been determined that useful information can be gleaned if only 200 people respond.
What are the possible benefits for me and/or for society?
We cannot promise any personal benefits to you from your participation in this study. We hope to demonstrate that rituals are helpful at the time of a pregnancy/neonatal loss and how the process of offering rituals can be improved based upon parent's actual experience of a loss. Bonding with other parents is considered significant in the grieving process of parents. This study will investigate the extent to which parents have connected with other similar parents and how effective this has been for them.
There is no anticipated benefit to you from your participation in this study.
If I do not want to take part in the study, are there other choices?
Yes, you are not required to visit the website and complete the questionnaire.
What information will be kept private?
Your data will not be shared with anyone except with your consent or as required by law. Your personal information such as your name will not be kept with any data collected. Individual questionnaires will be identified by number only; this list will not be linked with individual names. All data will be kept in a securely locked office or stored in a secure server with an encrypted hard drive for 10 years. If the results of the study are published, your name will not be used and no information that discloses your identity will be released or published without your specific consent to the disclosure.
Can participation in the study end early?
If you volunteer to be in this study, you may withdraw at any time. You have the option of removing your data from the study. You may also refuse to answer any questions you don’t want to answer and still remain in the study. The investigator may withdraw you from this research if circumstances arise which warrant doing so.
Will I be paid to participate in this study?
No, there is no payment for involvement in this study.
Will there be any costs?
There are no individual costs associated with participating in this study.
Legal Rights
By participating in this study, it does not mean that you waive any legal rights you may have under the law, nor does it mean that you are releasing the investigator(s), institution(s) from their legal and professional responsibilities.
If I have any questions or problems, whom can I call?
Pastoral support is available to you if you feel you need it after completing the questionnaire. You may contact Lucinda Landau, Graduate Resident Chaplain at the Spiritual Care Department, St. Joseph’s Healthcare Hamilton: 905.522.1155, ext 33253.
If you have any questions regarding your rights as a research participant and for patients of St. Joseph’s Healthcare Hamilton, please contact:
Office of the Chair of the Research Ethics Board, St. Joseph's Healthcare Hamilton, 905-522-1155 Ext. 33537.
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