Form 0920-20PJ Interview - Focus Group Discussion Guide TE/TL/TH

Attachment J. Interview - Focus Group Discussion Guide for Tribal Elders/Tribal Leaders/Traditional Healers

Form Approved

OMB No: 0920-xxxx
Exp. Date: xx-xx-xxxx

Public Reporting burden of this collection of information is estimated at 2 hours per response, including the time for reviewing instructions, searching existing data sources, gathering, and maintaining the data needed, and completing and reviewing the collection of information.  An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number.  Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer, 1600 Clifton Road NW, MS D-74, Atlanta, GA  30333; Attn:  PRA (0920-xxxx).

Interview - Focus Group Discussion Guide

For Tribal Elders/Tribal Leaders/Traditional Healers

Consent Review and Survey

[If in-person Focus Group]

• Thank you for joining our focus group discussion today!

• As others join, we would like you to review and sign the consent form for this study [provide consent form]. Would you like any support to go through this document? [if yes, read consent to participant].

• We would like to review some key parts of the consent form together. [Briefly verbally review the key parts of the consent form including purpose and use of study data, confidentiality parameters and data security, and opportunity to decline at any time. Be sure to emphasize that information is kept confidential and personal information is stored separately than their responses today, helping to preserve anonymity. Note that the audio recording will be destroyed soon after a transcript is produced.].

• Do you have any questions? Please take your time and feel free to ask any questions you have as you read through it. After you have reviewed the consent form and the research team has adequately addressed any questions or concerns you have, please sign and return the form to [insert name]. These signed consent forms will be stored separately from other information so your names will never appear with the information you provide.

• [Once the consent form is signed, administer the survey.] Thank you! This is a brief survey to help us describe, as a whole, the people we speak with in this study. These data will be combined to describe participants as a group. You will not be identified personally. [Administer survey – either by having participant read and complete individually or if support for consent process was sought by participant, community researcher to read each item and responses aloud and assist participant to complete survey]. Please let me know if you have any questions about any of the survey questions or response options. You can choose to skip or not answer any question for any reason. You can also decide to not complete this survey and still participate in the discussion today.

[If in-person Interview]

• Thank you taking the time to speak with me today!

• Before we get started, we would like you to review and sign the consent form for this study [provide consent form]. Would you like any support to go through this document? [if yes, read consent to participant].

• We would like to review some key parts of the consent form together. [Briefly verbally review the key parts of the consent form including purpose and use of study data, confidentiality parameters and data security, and opportunity to decline at any time. Be sure to emphasize that information is kept confidential and personal information is stored separately than their responses today, helping to preserve anonymity. Note that the audio recording will be destroyed soon after a transcript is produced].

• Do you have any questions? Please take your time and feel free to ask any questions you have as you read through it. After you have reviewed the consent form and the research team has adequately addressed any questions or concerns you have, please sign and return the form to [insert name]. These signed consent forms will be stored separately from the other information so your names will never appear with the information you provide.

• [Once the consent form is signed, administer the survey.] Thank you! This is a brief survey to help us describe, as a whole, the people we speak with in this study. These data will be combined to describe participants as a group. You will not be identified personally. [Administer survey – either by having participant read and complete individually or if support for consent process was sought by participant, community researcher to read each item and responses aloud and assist participant to complete survey]. Please let me know if you have any questions about any of the survey questions or response options. You can choose to skip or not answer any question for any reason. You can also decide to not complete this survey and still participate in the discussion today.

Opening Blessing and Activity – (e.g., cultural activity, land acknowledgement) [Facilitated by community researcher; Will work with the facilitator to determine whether this should come before or after introductions]

Permission to Record

As we indicated in the consent form and invitation we would like to (audio) record this discussion. The recording will be destroyed after we are able to prepare the transcript or notes from the discussion. Are there any questions about the recording? Ok, I will begin the recording now [Begin recording].

[If anyone refuses recording] Ok, instead my study assistant [insert name] will take detailed notes [Begin note-taking].

Introduction

Hello, [Name/Names]. I’d like to thank you for taking the time to join me today for this [interview/group discussion]. [Introduce all facilitators] My name is [Insert name]. I am/we are a researcher with [insert organization or institution and a very brief description of focus of research/experience]. This discussion is part of a study that is funded by the Centers for Disease Control and Prevention to understand how health and well-being are supported in urban and rural Native communities.

As part of this study, we are talking to many people in your community, including leaders, such as yourself, and holding group discussions with young adults and parents and caregivers.

You have been invited here today because of the knowledge you hold about [insert Tribe or urban Indian community name] community strengths and qualities. We appreciate the opportunity to learn from you and hear your perspective to understand how your community keeps children and families safe and happy and healthy.

We will ask a few questions to help start the conversation but will really have this space as an opportunity for us to learn from you. We will spend about [60/90] minutes together. The flow of the conversation will be as follows. We’ll start with introductions, then pose some questions about positive childhood experiences in this community, then turn to community prevention of adverse childhood experiences and substance use, recovery and healing journeys from substance use, and we will end with your ideas about opportunities to enhance prevention of trauma and substance use.

[For focus group] Before we get started, I just wanted to remind everyone to please share whatever you are comfortable sharing and please respect other’s privacy for what they share with the group. It is important that any stories or information shared today remains confidential and is not shared with anyone outside this group. You are free to respond or not respond to any questions. If you need to take a break at any time, for any reason, please feel free to do so. Does anyone have any questions about our discussion today? [Pause and answer questions if asked]. Is there anything more you want to know about me or this study? If you have any questions during the discussion, please know that you can ask them at any time.

[For focus group] Let’s start with introductions. Could we go around and have everyone introduce themselves and share anything you feel would be helpful or important as we start our discussion today? [Allow each participant to respond].

[For interview] I’ve spent a lot of time talking and sharing about this project. I’d like to give you time to introduce yourself and share anything you feel would be helpful or important as we start our discussion today. [Allow participant to respond].

COMMUNITY PROMOTION OF POSITIVE CHILDHOOD EXPERIENCES

Let’s begin by discussing how your community helps support community wellness and positive childhood experiences.

1. We would like to learn about the ways that [insert Tribe or urban Indian community name] helps its children have positive experiences. Could you share with us what is great about growing up here? [

[For Focus Groups: Introduce the whiteboard feature] I am going to use the whiteboard to write down what I hear about positive childhood experiences. Feel free to let me know if I miss something or get something wrong. [list positive childhood experiences]

[For Interview] I am going to write down what I hear about positive childhood experiences, so I can reference this with you later.

• Follow-up question:

  • How has growing up in [insert Tribe or urban Indian community name] changed since you were children?

2. How does [insert Tribe or urban Indian community name] support health and well-being, specifically for children, young adults and families? [continue to list health and well-being promotion efforts]

• Follow-up question:

• How do the positive experiences in childhood that we’ve listed here [refer to list] affect health and well-being in this community?

COMMUNITY PREVENTION OF ACES AND SUBSTANCE USE

Now, we would like to talk about the strengths and resources [insert Tribe or urban Indian community name] has to prevent children, families, and young people from experiencing adverse childhood experiences and substance use –to keep them from happening or reduce how often they happen. In our discussion today, when we refer to adverse childhood experiences or adversity, we mean experiences that can cause trauma such as physical or emotional harm, neglect, family conflict, historical trauma, and racism.

3. How does [insert Tribe or urban Indian community name] help prevent children, families, and young adults from experiencing adverse childhood experiences and trauma? Like before, I am going to write down what I hear about prevention resources or strategies. [list prevention strategies and resources]

• Follow-up questions:

  • How might these community strengths and resources also work to prevent or reduce substance use?

  • What other ways does [insert Tribe or urban Indian community name] work to prevent or reduce substance use for families and young people?

SUBSTANCE USE RECOVERY

There are various ways people overcome trauma and substance use. Some language that is used to describe this process is ‘recovery’ and ‘healing journey.’

4. For individuals in [insert Tribe or urban Indian community name] who have worked to overcome trauma or substance use on a healing journey, what resources or supports helped them heal?

• Follow-up questions

  • How do you think [support mentioned] helps individuals recover from substance use and ACEs/trauma?

5. What challenges or barriers have you seen get in the way of an individual’s or family’s healing journey?

• Follow-up question:

  • How have these challenges changed over time in [insert Tribe or urban Indian community name]?

  • How might [insert Tribe or urban Indian community name] go about trying to overcome the challenges and barriers?

[For Interview Only]: COMMUNITY COLLABORATIONS

We would like to talk with you about how individuals, programs, organizations, or others in [insert Tribe or urban Indian community name] may be working together either locally or regionally to prevent adversity in childhood and substance use.

6. What, if any, formal or informal collaborations or partnerships are occurring in [insert Tribe or urban Indian community name] focused on preventing adverse childhood experiences and substance use? This could include coalitions, committees, initiatives, policy workgroups, cross-agency programs or funding streams, etc.

• Follow-up questions (if collaboration is mentioned):

  • Who are the partners in this collaboration?

  • What are they seeking to do?

  • What are their intended impacts on trauma and ACEs?

  • What have the partners accomplished to date?

• Follow-up questions (if no collaboration is mentioned):

• What community collaborations or partnerships should there be or what could be helpful from your perspective?

OPPORTUNITIES TO ENHANCE PREVENTION EFFORTS

7. If anything was possible, what more would you have [insert Tribe or urban Indian community name] do to support well-being and healing journeys?

• Follow-up question:

  • What might be needed or helpful to make that happen?

Thank you for taking the time to share with me today. Those are all the questions I have for you. Is there anything else you would like to add to our discussion before we end?

Thank you again. I’m going to [end our recording/stop taking notes] now [End recording and notetaking].

After we are done hearing from members of your community and have a chance to begin summarizing the information, we may circle back with you to make sure our understanding of what you shared today are correct. This may be over email or a quick phone call. Are you willing to be contacted later? We will keep your contact information separate from other information you have provided to protect confidentiality. [If yes, check that we have their phone number and email address; if we do not, please ask for it]

[Share any additional information about dissemination protocols identified through the Data Sharing Agreement with the community]

Closing activity (e.g., blessing, cultural activity) [facilitated by community researcher]

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