Guide - Bereaved Parents

ATTACHMENT E

INTERVENTION RESOURCES FOCUS GROUP FACILIATOR GUIDE

Bereaved Parents

SAMHSA aims to develop a culturally appropriate resource that will address how parents of young adults who have died from substance use-related overdose can navigate the grieving process, cope with the loss of a loved one and overcome stigma. At the same time, recognizing:

• There is a clear lack of resources for parents on the topics of substance abuse intervention and overdose bereavement.

• Most opioid-specific social media posts centered on the scope of opioid misuse, but did not offer parents advice on addressing the issue with their children.

• Social media posts targeted at parents across all topics (opioids, marijuana, alcohol and substance abuse) were more focused on prevention rather than intervention or recovery from overdose bereavement.

INTRODUCTION (10 minutes)

• Good evening. Welcome! Thank you for taking time from your day to come here to talk with us.

• My name is _______________, and I will facilitate our conversation today.

  • We value your opinions, your ideas, suggestions, and concerns about parenting with today’s challenges related to substance abuse. Your participation in this discussion is of great importance to us, because based on your suggestions we will be able to help other parents navigate the challenges they face parenting their children with substance abuse challenges.

• BEREAVEMENT GROUP: Everyone here was invited because you have lost your child, as a young adult 17 - 25, to substance abuse.

DISCLOSURES AND GUIDELINES

The session will last approximately 90 minutes – 2 hours.

You have signed a Release and Consent Form telling you that we are digitally recording this session so that the information can be used to accurately reconstruct our conversation and to assure that we capture all of your ideas

Other members of our team will be observing through that one-way mirror.

Your privacy is important to us. Your names will not be used in reports and nothing you say will be attributed to you. A report will be written and only your opinions, suggestions, feelings, or experiences will be included. We are most interested in what was said, not who said it.

We are here to share personal feelings and current concerns but are not here to fix problems. We are relying on your input to help us understand how to help parents who lose a child to overdose

We want to hear about your opinions, comments, and experiences. On this very personal topic there are no good or bad answers, only comments. While you may share some commonalities in your experiences, no two of you are exactly alike. So, please feel free to add a different opinion to what someone else said; we want to have different points of view.

Please speak one at a time, and loud enough to be heard.

I will move quickly, sometimes, from one topic to another to make sure that we touch on the topics we need to cover.

We cannot have the distraction of cell phones during the discussion.

Any questions?

RESPONDENT INTRODUCTIONS (5 minutes)

What you may not know is that each of you has lost a child due to overdose]

So, I am asking each of you to share:

• First name only

• The members of your household by relationship to you

• How long ago you lost your child

• A topic related to overdose you hope we will address in the conversation we have today.

BACKGROUND – PARENTING CHALLENGES (15 minutes)

Let’s step back and talk for a moment about the parenting concerns that have been most challenging for you. From those mentioned, which was the most challenging? What makes you say that?

How did you address that issue? Did you know what to do? What did you do first? How did you know to do that?

How did you feel as you looked for information or resources? Who/what did you rely on? What types of information did you seek most often initially? How did you use it? Did that change as you became more informed?

What was your most reliable source of information? What is the main reason you say that?

What has your search for parenting information been like? [Probe for difficulties, roadblocks, open doors, etc.]

Who believes searching for resources and information was easy? What makes you say that? Who believes searching for resources and information was difficult? What makes you say that? Feel free to respond to both sides of this question.

WRITTEN: Finish this sentence. During my search for help, information or resources, I wish I had had .

ATTITUDES AND PERCEPTIONS OF FINDING HELP FOR SUBSTANCE ABUSE (35 minutes)

Among the parenting challenges we discussed, you did/did not mention the loss of a child to overdose.

What are the challenges you face immediately when you lose a child to overdose? How is the loss to overdose the same or different from losing a child another way?

Let’s focus now on you. This is definitely where your experiences will be different.

Tell me where you are in your grief.

What has helped you get there? Or, what has prevented you from getting where you thought you would be by now? What has changed since it began?

What have you done to help yourself? What have others done to support or help you?

Have you relied on any specific resources or sources of information to help you address your grief?

During this time, have you relied on any information or resources to help you through the process of losing a child to overdose? Tell me about that.

Help me understand where the “process” of grieving and needing support began for you. Have you wished you had done some things differently before or after you lost your child?

Who else was affected by the loss of your child? What has been your role is supporting them? Were siblings involved?

Did you anticipate the effect it might have on siblings? How did you handle that? How did you know to do that? What information was available? What resources were available?

How does the need for information change, if at all, as you move through your grief?

What did you think about the type of information available to you? Was it enough or not enough?

If enough: What makes you say enough? What topics of information did you find most useful?

What, if anything is missing?

If not enough: What was missing? How would that have helped?

How would you rate the information available to you to help you move through your grief? [Probe to understand each.]

Useful – not useful

Relatable – not relatable

Believable – Not believable

Easy to find – Difficult to find

Tailored to your needs – not tailored to your needs

Easy to understand – difficult to understand

Consistent with your values – not consistent with your values

What support did you have when you were trying to address your grief?

[Probe: Did you feel supported? What made you feel that way? What would have made it better/even better?]

What support do you wish you had when you were trying to find help to grieve?

In hindsight, what things are clearer to you about your need for resources and information?

What information did you rely on? How/where did you find it?

Who do/did you rely on during that period? How has that changed?

Family

Friends

Community

Health care professionals

Grief counselors

Some statistics point out that substance abuse is at epidemic levels.

In 2014, 47,055 drug overdose deaths occurred in the United States, and 61 percent of these deaths were the result of opioid use, including prescription opioids and heroin. Heroin overdoses have more than tripled from 2010 to 2014. ¹ Heroin overdoses were more than five times higher in 2014 (10,574) then ten years before in 2004 (1,878). Additionally, rates of cocaine overdose were higher in 2014 than in the previous six years (5,415 deaths from cocaine overdose). In 2014, there were 17,465 overdoses from illicit drugs and 25,760 overdoses from prescription drugs.

What is your reaction to that?

Probe: do you think there is any stigma associated with losing a child to overdose?

Do you think you are discriminated against in any way (as the parent of a child lost to overdose)?

What about the reactions of family, friends or co-workers?

What do you wish they knew?

Easel Exercise: With all that you have learned through your experiences, what advice would you give a parent who has lost a child to overdose? Encourage respondents to map it out step by step.

[Probe when did you work alone and when did you rely on others. Identify the others. Who?]

What would you say to other parents about how to handle their grief?

What would you suggest they do? What if anything would change the suggestion?

Do you think there is enough awareness around this issue? What do you want people to know?

Did your community offer help during your bereavement? How could communities assist other parents experiencing similar grief?

SEEKING RESOURCES [15 minutes]

Tell me about the resources you are aware of to help you when you lose a child to overdose?

For this need, how did you prefer to get your information? What makes that work for you?

If: the Internet [Probe: what sites – information sites identified by search engines; social media, other]

What makes those types of sites helpful for you? How is the information presented?

Formats:

Videos (e.g., testimonials of parents)

Social media content

Online products

Blogs

Engagement and awareness efforts

Support Groups – [Probe: how important are they to find? How do you choose?]

Have you accessed the SAMHSA website for information on treatment or related resources? If so, did you find it useful? What changes would you recommend?

REACTIONS TO INTERVENTION RESOURCES (15 minutes)

[Moderator points out to respondent that they are looking at a resource in the idea stage, and to focus their attention on the overall content of the material rather than the look of it.)

Tell me what is your reaction to this intervention resource?

Useful – not useful

Relatable – not relatable

Believable – Not believable

Tailored to your needs – not tailored to your needs

Easy to understand – difficult to understand

Consistent with your values – not consistent with your values

What, if anything would you change to make it more [choose word from list above mentioned by participant]?

How would you expect to gain access to or find out about this information? How would you want to get it or find out about it?

CLOSE (5 MINUTES)

What closing comments do you have about this conversation?

Thanks for coming tonight and providing your opinions.

Your comments have been very helpful and insightful.

Goodnight and have a great day tomorrow.

1 Rudd, R. A., Aleshire, N., Zibbel, J. E., & Gladden, R. M. (2016). Increases in drug and opioid overdose deaths — United States, 2000–2014. MMWR, 64(50), 1378-1382.

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