Community Response to Traumatic Grief and Loss:

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This example was adapted from a protocol submitted to the SBSIRB by Dr. Ann McElroy, and posted with her permission. While the investigator retains the rights to the conduct of this research project, the text may be used and/or copied for creating substantive materials to submit to the University at Buffalo SBSIRB without further authorization.

IRB ISSUES PRESENTED IN THIS PROTOCOL: This protocol is an example of a greater than minimal risk study. It deals with bereavement and coping after the recent death of a loved one. The PI includes extensive exclusion criteria, a possible adverse event response section, risk minimization section and an extensive list of referral resources should they be needed. The procedures section is also centered on the fact that subjects have a high likelihood of becoming disturbed, upset, or unhappy during data collection. It contains an appropriate informed consent document that explains all of the aforementioned issues in a manner appropriate to this type of study along with information sheets that are given to all subjects containing counseling referral information.

Community Response to Traumatic Grief and Loss:

A Proposal for Needs and Gaps Assessment Research in Niagara County

Principal Investigator: Jane Doe

Dept. of Anthropology

University at Buffalo

Research Assistants: Ms. Jane Doe 1

Ms. Jane Doe 2

Contact:

Purpose

Doe1234@buffalo.edu

(716) 555-5555, X 555

The purpose of the proposed research is to assess community needs for traumatic grief services in Niagara County, New York. Recent research has shown that protocols are in place in

Niagara County for debriefing first responders in a traumatic event.

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However, protocols for assisting the family and community of crime victims tend to address primarily short-term needs and are not fully coordinated among the bereavement services, law enforcement agencies, and counseling resources of Niagara County.

When a family or a community experiences sudden, traumatic death, the need for grief counseling and support services may be extensive and prolonged. Whether the loss is due to homicide, a fire, a suicide, an accident caused by a drunk driver, or a terrorist attack, the impact

1 Cf. Report of the Niagara County Grief Center to the U.S. Department of Justice, Office for Victims of Crimes,

May 26, 2004.

of grief encompasses a wide arena. Not only are kin and spouses deeply affected, but also friends and classmates, neighbors and co-workers, survivors, witnesses, and emergency personnel may be traumatized in ways that are not fully apparent until months or even years after the event.

Further, cultural differences in bereavement patterns and in the needs of various ethnic communities of this county have not been fully addressed and need to be studied in order to reduce disparities and gaps in services.

Recognizing the priority to assess community needs through research before planning such services, the Grief and Loss Committee of the Niagara Behavioral Healthcare Network has obtained a grant from the New York State Legislature through the support of State Senator Jon

Doe to fund a needs and gaps study. The Committee has subsequently reached an agreement with medical anthropologists from the University at Buffalo to carry out this project.

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Both qualitative and quantitative data will be gathered through survey interviews and indepth, open-ended interviews with individuals who have experienced the unexpected, violent death 3 of one or more persons in their social network. These may be parents and/or siblings of a deceased child; a widowed spouse; a person who has lost a parent; neighbors, friends, or fellow employees of a deceased person.

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When possible, the researchers will interview more than one person associated with a particular traumatic death in order to understand the breadth of the impact on various individuals in the social network and community.

The intended products of the research include a report by the end of 2005 providing quantitative data from surveys, qualitative analysis of interviews, and recommendations for action. Other products may include M.A. research papers for two graduate students, publications, and presentations at conferences. The data, analyses, and written documents will be shared with agencies and programs in Niagara County for purposes of grant writing and program evaluation but will remain the intellectual property of the researchers. Informed consent documents, interview notes, and any transcripts will remain in the office of the P.I. for a minimum of three years after the project ends.

Participants

The participants in this research are people who have experienced a sudden, traumatic death of someone to whom they were close. Traumatic deaths include homicide and suicide, natural disasters, terrorist attacks and combat deaths, drowning, farm and industrial accidents, and other accidental deaths in due to criminal causes, such as DWI and arson. A nested sample method will be used, in which the large survey sample of approximately 100 to 125 will provide recruitment opportunities for a smaller sample ( n ≈

40) for in-depth interviews. Survey data will provide a quantitative summary of issues and opinions associated with ways of coping with the aftermath of violent death from the perspective of survivors and witnesses. In-depth, chronological accounts of stages and processes of healing will provide qualitative dimensions to

2 See Appendix E for letter of support and permission.

3 As the purpose of the needs assessment is to collect data on needed services for those affected by violent loss, the project will exclude cases of deaths due to natural causes, whether sudden or expected.

4 People under 18 years of age will not be interviewed, as minors are considered a vulnerable category. However, young adults may be interviewed about losses experienced when they were younger than 18.

an assessment of traumatic grief resources and give us insight to the importance of cultural and symbolic rituals and resources.

Given the economic and ethnic diversity of Niagara County, the research design will strive to incorporate balanced representation by gender, age group, economic class, and ethnicity. The sample will include African Americans, Hispanic Americans, 5 Native Americans, Anglo

Americans of various European backgrounds, and people of other origins (which may include

Asians Middle Easterners, or others).

Exclusion Criteria

Based on recommendations by grief specialists, a primary criterion for exclusion of participants will be length of time since the traumatic death occurred. The rationale for this criterion is that interviewing survivors in the early stages of grief may put them at additional risk.

To be eligible for participation, bereavement must have occurred no less than one year before the interview, and as a general principle, no less than fourteen months (due to the particular sensitivity of anniversaries).

Although the second and ensuing years of bereavement may be as difficult as the first year, many people move beyond the initial shock phase and into active grieving processes. Eventually these stages will lead to healing, but grieving must come first. The second year is often when friends, employers, and co-workers encourage the person to “move on” and return to normal functioning, not recognizing that grief for a loved one who died violently is long lasting. This is often when support services end, as well, and survivors are left to cope with complicated legal and financial matters. Understanding the problems facing households during the second, third, and ensuing years after a violent death, and learning about the resources they call upon for help, will provide valuable data. Thus the time-frame is open but must be 12 or more months after the death.

A second criterion will be that the traumatic death must have occurred in New York State and/or that the research participant has continued to live in New York State after the death (if the loss occurred elsewhere). Preference will be given in forming the sample to residents of Niagara

County.

Third, if a family member has been charged with causing the traumatic death, and if legal action is still pending, an interview with other members of the family may put them at unusual risk. Thus a case of this nature will be excluded.

Recruitment

The recruitment method described here has been proposed by the Grief and Loss Committee and is amenable to individuals who represent agencies such as the Niagara County Sheriff’s

Department Victim Assistance Unit, who have worked with families of violent death victims, and have access to their records. They have offered to recruit participants while protecting the

5 Hispanic Americans in the sample must be able to understand and speak English, as funds are not available for a

Spanish-language interpreter. However, consent forms in Spanish can be provided if necessary.

anonymity of the families and the confidentiality of their cases. The researchers will not have access to these records.

The researchers will give a recruitment script [ see Appendix A] to Grief and Loss Committee members who are willing to make initial contact with a family by phone or by letter and to provide general information about the project.

6 Names and contact information for those willing to be interviewed will be passed on to the researchers, who will then contact potential participants to provide information about the project, screen for suitability and verify willingness of the participant, answer any questions, and arrange a time and place for the interview. [The script for telephone communication between researchers and potential participants is in Appendix

B ] .

The researchers will make it clear to all agencies, to potential interviewees, and to members of the Niagara Behavioral Healthcare Network that participation is completely voluntary. No pressure should be placed on individuals or families to participate. If individuals decline to participate at the outset, or change their minds about participating and decline, or withdraw at a later point, there will be no repercussions in terms of anonymity, confidentiality, rights to services, or legal rights.

The researchers will also make it clear in preliminary information and in informed consent procedures that the purpose of the interview is to collect information on the availability of services for families, friends, and co-workers who have been victimized by a violent death, the kinds of services that have been most helpful, and gaps in services. They will emphasize that it is not the purpose of the interview to provide counseling on grief management, although the researchers will have referral resources available for participants.

Consent

Written informed consent will be obtained from participants by the researchers. When the participants arrive for the interview, they will go over the consent form in a private room with the PI and/or a graduate research assistant, be asked if they have any questions, and then asked to sign the form. The interview will then begin.

To safeguard participants as well as researchers, informed consent documents will clarify that information will be kept confidential to the extent allowed by the law. Participants will be informed that if they disclose information regarding abuse or injury to a child, or intent to harm themselves or someone else, the researchers are required to report this information to an appropriate person.

Standard safeguards and rights will be stated in recruitment materials and in informed consent documents. These include statement of the purpose of the research and of the voluntary nature of participation; disclosure of risks and benefits; statement of how confidentiality and anonymity will be maintained in records; and statement of rights to decline to participate without repercussions, to withdraw, to withdraw one’s data, and to be informed of the outcome of the research; and statement of the right to have any questions answered.

6 For example, Ms. Jane Doe 2 of the Niagara County Sheriff’s Department Victim Assistance Unit has offered to serve as liaison between families the Unit has served and the researchers.

Research Procedures for Participants

The researchers plan to use a participatory action model of needs assessment. In this type of anthropological research, participants have the opportunity to serve as volunteer consultants: telling the story of their loss, listing and describing services that were helpful at the time of the traumatic death and during the stages of healing after the death, and advising researchers on needs that were not met and types of services that might have filled important gaps.

People who agree to be interviewed will meet by appointment with one or two researchers at a mutually convenient location. Private interview rooms are available in Drop-In Centers associated with Community Missions, Inc., in Lockport and in Niagara Falls, and rooms can be reserved by the researchers at the Dale Association center in Lockport and at the Mental Health

Association offices. If preferred, interviews may be done at a participant’s home or at a church office. Participants will be given the option of having a family member or friend present at the interview or being interviewed alone.

All participants will be asked survey questions (Part I) about aspects of the traumatic death

(e.g, whether the participant witnessed the event, and if not, how notification occurred; services offered in the first days and weeks after the death; aspects of dealing with the legal system, if that occurred; etc.). This interview will take about 45 minutes [ see Appendix C for sample questions ]. Part II, involving in-depth questions about their long-term needs, available services, and family rituals during various stages of bereavement, will be given to those individuals who agree to a second interview of approximately 45 minutes. This may occur after Part I is finished or at a later time. All individuals will be offered the opportunity to take part in the extended, indepth interview.

There will be no pressure on participants to complete Part II, as the sample for the in-depth questions is expected to be smaller (50 to 60) than for the survey questions (about 125). A subsample of those who complete Part II will be asked if they would like to take part in a focus group at a later time. Those who are interested will be contacted after a few months (possibly in the Fall of 2006), recruited for participation in a focus group, and given additional informed consent materials.

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Researchers will bring a small tape recorder to interview sessions. The informed consent form will emphasize that taping is optional and will specifically ask permission to tape the interview.

The tapes will be kept in a locked file cabinet and will be transcribed within six months, after which they will be erased. De-identified transcripts will be kept in the locked file cabinet for five years.

Compensation

No compensation will be paid to participants in this project.

7 We are not seeking IRB permission for the focus group component of the research at this time.

Confidentiality

The recruitment method will ensure that researchers have only the names of participants who have agreed to be contacted, their phone numbers, and the circumstances of the traumatic death.

Other case materials will not be available. This identifying information will be kept in a locked file and will be replaced by a set of anonymous code identifiers and destroyed once the interview is done. If the individual decides not to go through with the interview, or withdraws during the interview, the identifying information and data will be destroyed.

All data associated with the individual (interview answers, notes, analysis, tapes) will be identified by numerical code only. The name or other identifying details (such as address or place of employment) of the interviewee will not be on the tape nor on the transcript. The tape will be transcribed by the interviewer within six months, after which it will be erased. The cassette tape itself and the transcript will be identified only by a code. The de-identified transcript and analysis sheets will be kept in a locked file at the P.I.’s office where they will remain for approximately five years following the completion of the project. In reports, presentations, and publications, when qualitative case details are presented, pseudonyms rather than ID numbers will be used for ease of reading. Identifying details such as age, residence, or employment will not be given.

Risks

Risks to participants are greater than minimal due to the possibility of emotional distress during the interview. It is expected that participants will experience emotional responses while discussing details of a traumatic death. These responses may include crying and expressions of anger, guilt, and other emotions, or the person may remark that she or he is afraid of breaking down and is trying hard to stay calm. Based on the advice of grief counselors, we feel there is also a risk of distress extending beyond the interview and exacerbating the generalized grief the person is still experiencing.

Potential Adverse Events

Should the participant exhibit signs of distress, the interviewers will reassure the person that these reactions are normal, will offer some water and a chance to regain composure, and will ask whether s/he wants to continue or stop the interview. Evidence of undue distress (e.g., inability to stop crying, agitation, signs of dissociation) may require the researcher to terminate the interview in a gentle and tactful way. The person will be given enough time to regain some stability and to assess what is needed before leaving. A list of referrals will be provided, and if necessary a family member can be called to provide advice or transportation. If participants need professional counseling, they will have access to referral for services where they can arrange an appointment for counseling.

Risk Minimization

Regardless of whether the person shows emotion, at the end of Part I and again at the end of

Part II, we will ask how s/he is feeling. If she expresses distress, we will talk about it as long as

needed and ask the participant permission to call a family member or friend. We will give the participant a debriefing sheet with information about possible distress after the interview, a list of resources, and referral information [ see Appendix D ]. One member of the research team will call the person the next day to assess whether help with referral contacts is needed. The researchers will follow up within a week with a thank you card that encourages him to follow through on referrals, pastoral counseling, or a support group, as needed.

As additional safeguards for individuals who experience undue distress during an interview, the researchers will be able to contact the Niagara Grief Center, which maintains a 24 hour

Helpline offering referrals to private counselors, referrals to support groups, and connections to professionals. The Niagara Grief Center is closely associated with Community Missions, Inc.,

The Dale Association, Inc., The Mental Health Association in Niagara County, Inc., Niagara

Interfaith Chaplaincy, Inc., and other providers. The researchers will also have available the

HELP handbook and access to the county-wide HELPLINE, with access to hundreds of service providers and organizations.

There is some risk of distress for the interviewers as well, both in terms of discomfort with the subject matter of traumatic death and in terms of dealing with victims who may have unresolved grief. To minimize the risk of distress, the student assistants and the P.I. are being trained in principles of sensitive interviewing by an experienced grief counselor.

The Principal Investigator is Director of the Applied Medical Anthropology graduate track in the Department of Anthropology at UB. She has long experience with applied health projects, including directing a student training project (1980-1994) on rural and migrant ministry health services in Niagara County; training students in Erie County (1985-1999) on projects on health services for immigrants, refugees, and people with disabilities; and supervising regional and international projects on drug court programs, domestic abuse programs, elder care, men’s health care, and rural-urban immigrants over the last 15 years. Her own research on health and identity in communities in the Canadian Arctic continuing from 1967 to the present has in recent years included life history interviews that have occasionally touched on traumatic losses such as fatal accidents, suicides, and deaths due to drug overdose.

The research assistants are graduate students in the Department of Anthropology. They have been recruited to join the project based on their maturity, capacity for empathy, and ability to conduct interviews with sensitivity.

In January, 2005, the P.I. and the R.A.s had five training sessions in techniques of bereavement interviewing with Jane Doe 3, Ph.D., a researcher with Community Missions, Inc. and a member of the Grief and Loss Committee. Dr. Doe has extensive experience with grief services and counseling through work with the Life and Death Transitions Center in Buffalo; private practice therapy; HIV/AIDS counseling education; research in Israel on risk, stress and trauma in the lives of women peace activists; and in her current position with Community

Missions. Training has also been provided by Ms. Jane Doe 4 of Women and Children's

Hospital of Buffalo who counsels bereaved families who reside in any of the eight counties of western New York. Dr. Doe 3will also be available for debriefing during monthly meetings to

help the researchers manage personal issues and stress arising from the interviews, and additional training may take place as needed in late spring of 2005.

Benefits

Direct Benefits. By participating in the research, some individuals may also receive personal benefit from having the opportunity to tell the story of their loss and its impact on their lives and from reviewing the steps toward healing that they have taken. Some may feel that talking about their tragedy in a way that benefits the community may, in a small way, honor the memory of their loved one.

Indirect Benefits. The main benefit to participants will be the knowledge that their information obtained through interviews will contribute to the goals and the mission of the

Niagara Behavioral Healthcare Network to expand and improve bereavement services and grief counseling in Niagara County and in Western New York.

Deception. No deception will be used in this project.

UNIVERSITY AT BUFFALO

Department of Anthropology

Study Title: Community Response to Traumatic Grief and Loss

INFORMED CONSENT FORM

FOR QUESTIONS ABOUT THE RESEARCH, CONTACT : Jane Doe, Associate Professor, in the

Department of Anthropology at UB. You may reach her at (716) 555-5555, Ext. 555, or by e-mail at: Doe 1234@buffalo.edu. Please feel free to contact her about any questions you may have about this study.

You have been invited to take part in a research project as described below. This consent form explains the research study. Please read it carefully. Ask questions about anything you do not understand. If you do not have questions now, you may ask them later when they come to mind.

If you have any questions about your rights as a subject in a research project, you should contact

(anonymously, if you wish) the Social and Behavioral Sciences Institutional Review Board, 515

Capen, University at Buffalo, Buffalo, NY 14260, or by phone 645-6474.

Researchers: Jane Doe, Jane Doe, Jane Doe 2, and Jane Doe 2.5

Department of Anthropology, University at Buffalo phone: (716) 555-5555 e-mail: <Doe1234@buffalo.edu>

Purpose: This project is a study of the experiences and needs of families and individuals affected by sudden traumatic death and grief. The Grief and Loss Committee of the Niagara Behavioral Healthcare Network has started the project in order to assess what types of grief services are available to bereaved families in Niagara

County, and what types of services are not available and are needed. We will be

preparing a report for the Grief and Loss Committee, and we may also present findings at conferences or in published articles.

Procedures: We are asking you to volunteer to be interviewed for this project because you have experienced or witnessed a traumatic death in the past. We will ask you to tell the story of your loss, tell us about services that were helpful at the time of the loss and afterward, and tell us about types of services that were not available. We would also like to have your views on the need for bereavement services in

Niagara County today.

You should understand that this is a research project. You will be asked questions about your experiences and opinions. The interviewers are not grief counselors and cannot provide therapy. They can suggest contacts and resources for you.

The first interview is a survey, with some standard questions that we will ask of everyone who participates. We will ask you some questions about the impact of this loss on you and others, how you coped with your loss, and what services made a difference. It will take you about 45 minutes to answer these questions.

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We would like to do a second interview with people who are willing to answer some additional questions. These are open-ended questions about the stages of bereavement you have gone through, that is, how your grief has changed over time. There are also questions about resources in your own culture or community.

These questions give us an in-depth understanding of what you have experienced.

This interview will take another 45 minutes. You do not have to agree to do the second part. If you do agree, we will do the second interview after you take a short break. Or if you prefer, the second interview could be at another time.

To make sure we understand and remember your answers, we would like to record your interview on a cassette tape. The tape will be transcribed and then erased. If you do not want to be taped, you may decline.

Your rights: Your involvement in this study is completely voluntary. After reading this consent form, you have the right to decide not to participate in this study. If you decide not to participate, or if you stop during the interview, or if you withdraw your information later, you still have the right to any services in Niagara County to which you are otherwise entitled, including services from the Grief Center.

If you don’t want to answer certain questions, you have the right to say so. You do not have to do the second interview if you are asked. If you become tired or upset, you may ask to take a break or ask to stop.

Confidentiality:

You have the right to have a family member or friend with you during the interview, if you so choose.

Your individual privacy and your family’s privacy will be maintained in all published and written data resulting from the study. Interviews will be audio taped with your permission, and the information from this study will be coded from these tapes with a number rather than your name. The tapes will be kept in a locked file cabinet and will be transcribed within six months from the interview, after which they will be erased. The transcript will have no identifying information and will remain in a locked file cabinet for approximately five years following the completion of the project.

Whatever you tell us will be kept confidential to the extent allowed by the law.

However, if you tell us that you are thinking of hurting yourself or another person, or thinking about killing yourself, or tell us that you have injured or seriously neglected a child, we are ethically required to report this information to appropriate authorities.

Risks:

You have the right to have all of your questions answered before participating in this study, and you will receive a copy of this consent form.

Because you will be asked about your memories of a traumatic death of someone close to you, there is a chance that you may feel upset during the interview. You may feel like crying or showing feelings of anger, guilt, and other emotions.

These reactions are normal. If you begin to feel this way and want to take a break, you may do so. After a few minutes, we will ask if you want to continue or stop the interview.

If you become very upset, we may decide to stop the interview. If this happens, we will stay with you until you are calmer. We will also give you a list of phone numbers for agencies where you can seek counseling. We may ask your permission to call one of your family members or your friend.

There is also a chance that you may feel upset after the interview. We will give you a debriefing sheet with information on how you can contact us, a list of resources, and referral information.

Benefits: By participating in this study, you will benefit by knowing that your information will help in the planning of bereavement services for families and individuals in

Niagara County. You may also receive some personal benefit from telling the story of your loss and its impact on your life and from talking about the grieving and healing processes that you have been going through.

Compensation: There will be no financial compensation for your participation in this study.

Before you sign: By signing below, you are agreeing to participate in a research study. Make sure you understand the purposes of the study and your rights. Make sure to ask any questions you want and that the answers are clear to you.

Consent of participant:

I have read this consent form, or it has been read to me. My questions have been answered. I agree to participate in this study.

_______________________________________ ____________________

Signature Date

I agree to be audiotaped during the interview: _______ ________ yes no

Researcher’s statement:

I certify that I obtained the consent of the participant whose signature is above. I understand that

I must give a signed copy of the informed consent form to the participant and keep the original copy in locked files for three years after completion of the project.

______________________________________ __________________________

Signature Date

Community Response to Traumatic Grief and Loss – Research Project

Appendix A: Telephone Recruitment Script

Callers to recruit interviewees should attempt to follow this script during calls, with appropriate modifications:

“Hi, this is _______________ calling from the ___________[ give name of agency, for example

“ Niagara County Sheriff’s Department Victim Assistance Unit”.] I would like to tell you about a research project that is starting and to ask if you would participate in it. Do you have time now for me to tell you about that project? [ if no ]: “is there a time I could call you back to tell you about this project?” [ if yes :] Our office is part of a network that has started the Niagara Grief

Center. The Center will provide counseling, information, and referrals for people who have had a traumatic loss. We started this based on continual gaps in service for people who need help for a year or two or longer after the death of a loved one. We are trying to eliminate these gaps in grief services for families in Niagara County.

I’m calling you because [ give example of previous contact, for example “we have worked with you in the past”] and we would like your input into planning this Grief Center. Your information would be very helpful. We have teamed with people from the UB Department of Anthropology, who will be interviewing families in Niagara County. Your participation would be completely voluntary, and we would assure you complete confidentiality. You do not have to participate. If you decide not to, it will have no effect on your right to services from our agency [e.g., the

Victim Assistance Unit].

Do you have any questions about this project? [ if asked about amount of time, say it would take from 45 minutes to about an hour and a half. If asked about the place, say it would be at an office in Lockport, Niagara Falls, or Tonawanda, whatever is most convenient, and at a time that is mutually agreeable. If asked if there is any payment for the interview, say that there is not.]

Are you interested in participating in this project? [ If no , thank the person and end the call. If yes :] Thanks! We’re glad you can help in this project. I will pass along your contact information to the researchers, and one of them will be contacting you in the next week or two to schedule an appointment. They can tell you more about the project when they call you. If you change your mind about arranging an interview when they call, that is okay, you have the right to decline.

When is a good time of day for them to call you? ___________ [ get best call times] Should they use this phone number, or is there another number to use? [if yes re another number:] May I have that number?

Appendix B: Script for Telephone Recruitment by Researchers

Procedure : the researchers will make calls from the lists of those people contacted by a Niagara

County agency who agreed to be called for an interview.

8 The caller will identify herself and ask specifically to speak with the person whose name is on the list. If the person is not at home, the caller will ask when is a good time to call again. Once the listed person is reached, the following script will be used:

“Hi, this is _______________ calling from the Traumatic Grief and Loss project at UB. Last week a person from the _______________________ [e.g., the Sheriff’s Department Victim

Assistance Unit] talked with you about this research project. You said you might be willing to be interviewed. Do you have a few minutes so I could tell you about this project now? [ If no: arrange another time to talk. If yes: continue.]

We are doing a survey for the network of agencies in Niagara County that is planning a Grief

Center. The Center will provide counseling, information, and referrals for people who have had a traumatic loss. This service will be for anyone who has experienced a sudden, unexpected loss of a family member, a friend, a co-worker, or a neighbor. In order to plan and develop this

Center, we would like to talk with people who have had a loss in the past. It could be one or two years ago, or even longer, 10 or 15 years ago. Because you have had this kind of loss, your information would be very helpful.

Before we continue, I need to ask a couple of questions to make sure you are eligible. First, is your age 18 or older? [If no, end the call and re-check with agency. There may be another person in the household who could be interviewed.]

Second, did this loss occur at least a year ago or longer? [ If no, explain that we will not be interviewing people who have a recent loss. Express sympathy for the loss and end the call ].

Now, I will be telling you what will happen during the interview. We will ask you to come for an interview that could be as short as 45 minutes and might take up to one and a half hours. We will be giving a 45-minute survey to about 120 people over the next six months. We will also ask people to consider answering some in-depth questions after they finish the survey. It will be your choice whether to answer questions in the second part. The questions might help us understand better the impact of the loss on others in your family or community. There will be no pressure on you to stay longer or to return for a second interview.

If you volunteer for the interview, we will schedule an appointment at a time that is good for you. The interview will be at a community center in Lockport or Niagara Falls or North

Tonawanda, whichever is most convenient, or if you prefer we could meet somewhere near your home. If you want, you could bring a friend or family member with you. One or two people on the research team will talk with you in an office where there is privacy. They will ask you questions about the impact of your loss on you and on others, what kinds of services were available to you, and what services or programs do you think were needed but were not

8 The researchers will verify with the agencies that no cases of death caused by a spouse or family member that are still pending in trial or litigation will be included on the list. This screening criterion will not be asked during phone recruitment because it is so sensitive.

available. If there are any questions you do not want to answer, you do not have to. Your participation will be completely voluntary, and your information and identity will be completely confidential.

You do not have to participate. If you decide not to, there will be no penalty, and it will have no effect on your right to services from ___________ [state the agency; e.g., the Victim Assistance

Unit] or other agencies in Niagara County. Even if you agree now to participate, you could decide to withdraw from the project at any point.

Do you have any questions about this project? [ Answer any; note the kinds of questions that are asked.

]

Are you interested in participating in this project? [ If no , thank the person for his/her time and end the call.

If yes

:] Great! We’re glad you can help in this project. [

Arrange day, time, place. Make sure the person has transportation. If s/he has no transportation, it is possible that a shuttle from one of the community centers could provide a ride, so arrange to check on this and to call back to confirm.]

Now, to confirm, your appointment is ___________________________ [date, time, place]. In case you need to change that appointment, or need directions, let me give you a phone number.

[ Give number, make sure person has name of caller ].

Would you like me to mail you a reminder and directions? [ If yes , get the person’s address.]

Will it be all right if I call you a day or two before the appointment just to confirm it? [If yes :]

When is a good time of day for me to reach you?

Do you have any more questions?

Thank you so much for volunteering for this interview. I look forward to meeting you.

Survey Part I Questions about loss.

Part II: In-depth, open-ended interview.

Debriefing

Thank you for assisting us in the research project, “Community Response to Traumatic Grief and

Loss.” Your willingness to talk about the loss of a person you care about is an important contribution to planning and developing the Niagara Grief Center. In the long run, your participation may lead to improvements in services for individuals and families who experience a loss like yours.

We understand that talking about an unexpected, sudden death of someone close to you is an emotional process. Describing your loss may have brought back strong feelings. It is possible that you will still have these feelings when you go home today, and you may want to contact someone to talk over how you feel.

If there is someone who has been helpful to you in the past, such as your pastor or priest, a good friend, or a counselor, we encourage you to try those contacts first. If you want to try other resources, the list below gives agencies you could contact to find out about programs and resources in the area, including grief counseling.

Resources

Community Missions, Inc.

The Dale Association

Shared Sorrow ( grief support group)

Center for Family Therapy

Catholic Charities

Samaritan Pastoral Counseling Center

Family & Children’s Service

of Niagara, Inc.

Mental Health Association of

Niagara County

The Niagara Grief Center

24 Hour Helpline

Crisis Hotline

(716) 285-3403

(716) 693-9961

(716) 433-3780

(716) 434-7430

(716) 282-2351

(716) 743-9117

(716) 285-6984

(716) 433-6019

(716) 433-3780

(716) 433-3780

(716) 282-5432

(716) 285-3515

For information about study results, contact:

Dr. Jane Doe (716) 555-5555

Appendix E: agency letter of support and permission

January 12, 2005

Jane Doe Ph.D.

University at Buffalo

Department of Anthropology

Buffalo, New York 1

Dear Dr. Doe:

In 2003, the Niagara Behavioral Healthcare Network responded to a request for proposals (RFP) from the Virginia Mason Medical

Center, in conjunction with the Federal Office for Victims of

Crime, to formulate a community approach for responding to incidents of sudden traumatic grief and loss. I am pleased and proud to report that our application was one of five nationally accepted for this pilot project, which more specifically involved the development of protocols to be used in Niagara

County for such incidents. Thus the Grief and Loss Subcommittee was born!

Our first task was to identify community partners that encompassed not only service providers, but law enforcement groups, clergy, first responders, coroners, hospital personnel,

EMT’s, legislative representatives, businesses, schools and others who might be contacted to deal with or affected by sudden tragedy. The culmination of our meetings over the past 18 months was the development of the Niagara Grief Center.

In an effort to determine what gaps in services Niagara County was facing in relation to this topic area, one of the committee participants, Dr. Jane Doe 3, suggested that we approach you and the Department of Anthropology. We decided that we’d like to have a graduate student project, if possible, that would help to define this dilemma of need for helping those grieving from a sudden traumatic loss. We were delighted with your interest and presentation of the materials for the titled project: “Community

Response to Traumatic Grief and Loss: Needs and Gaps Assessment

Research in Niagara County.”

The Niagara Behavioral Healthcare Network is highly supportive of this project as you have outlined, your suggested students,

who have shown an interest and of the interview questions that are being proposed with the research subjects. It is our belief that this information will be invaluable as we continue as a committee to direct the future services and offerings of the

Niagara Grief Center.

We are also most grateful that the Department of Anthropology supports this assessment to the point of seeking formal approval from the Institutional Review Board. It could have been easily dismissed as being too difficult a subject or project to pursue.

To have such a credentialed university as a part of this project’s research and development is more than we could have hoped for in defining the need in such a sensitive area.

Thank you again for your leadership and willingness to pursue this project on our behalf. Should you or the Institutional

Review Board need any additional information, please feel free to contact me at the office by calling:555-5555 or after regular business hours by using my cell number: 555-5555

We look forward to your response and getting the project underway in this new year!

Sincerely,

Jane Doe 5

NBHN President

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