NPRC Focus Group-Quality of Life Organizational Represen

National Paralysis Resource Center Evaluation
Quality of Life Subgrantees Discussion Guide
Consent Language
Thank you for taking the time to speak with us today. My name is [name] and I am here with
[name]. We are with RTI International. We are part of the research team seeking to understand
how the National Paralysis Resource Center (NPRC), which is administered by the Reeve
Foundation, operates and what features make it successful. This study is funded by the
Administration for Community Living (ACL) an operating division of the U.S. Department of
Health and Human Services.
This evaluation is a 4-year effort that includes a mix of interviews, focus groups, surveys, and
performance monitoring to assess how well the NPRC is meeting its goals. The purpose of our
discussion today is to learn about your perspectives and experiences with the Reeve
Foundation’s Quality of Life Grants program. Specifically, we have some questions to ask you
related to benefits and drawbacks of the Quality-of-Life Grants program.
We are expecting our discussion today to last approximately 90 minutes.
We want to inform you that there are no “right” or “wrong” answers to these questions. We are
interested in your individual perspective. If there are any questions that you don’t feel
knowledgeable about or don’t feel comfortable answering, please let us know and we will move
to the next question.
The information gathered during our conversation today will be summarized for briefs that we
submit to ACL. These briefs may eventually become public as a way to describe and highlight
the NPRC’s work. We may use quotes in our reports to highlight an important theme or finding.
However, quotes will not be attributed by name and will be used sparingly. If there is anything
you do not want to be quoted, just let us know.
We’ll be taking notes during our discussion, but if it’s okay with you we would also like to record
this discussion. Do we have your permission to record?
Do you have any questions for us before we get started?

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Protocol Questions
Introductions
Before we get started, we would like to first go around the room and introduce ourselves. Please
tell us your first name and a brief summary of your organization. Include in your summary the
name of your organization, the purpose of your Quality of Life (QOL) grant, and if possible a
ballpark estimate of the number of people served by your QOL grant.

Becoming a QOL Grantee
We’d like to begin our discussion by talking about how you learned about the QOL grant
program and gain further information about your goals for participating in the program.
1. How did you find out about the Reeve Foundation’s QOL Grants program and what had
you heard about it?
2. What attracted you to apply to the QOL grant program?
a. What did you know about the Reeve Foundation’s QOL priorities if anything?
3. What were you hoping to accomplish with this grant? What are some of the unmet needs
for individuals living with paralysis that you are trying to address?
4. Does your organization have diversity and inclusion goals for your QOL-funded
programs? If so, what are they?
a. How is the Reeve Foundation helping you to achieve these goals?
b. Are there certain populations that are historically underserved in your community? If
so, please describe how your organization may be dedicating resources available
through the QOL grant to reach any of these populations specifically.
5. Now, we’d like you to think back to the grant application and application process. Do you
recall experiencing any challenges to applying for this grant? If so, what were they? Are
there any improvements to the process you would recommend?

Grant Implementation and Evaluation Support
6. What support have you received from the Reeve Foundation in implementing your
grant?
7. What support have you received from the Reeve Foundation in evaluating the impact of
your grant? How helpful was this support?
8. Is there any additional support you would like to receive to help you accomplish your
implementation or evaluation objectives?

Impact on ACL/Reeve Foundation goals
9. How would you describe the impact your QOL grant has had on individuals living with
paralysis or their caregivers?
a. Specifically, what impact has the grant had on their physical or mental health?
b. What impact has the grant had on their sense of independence, empowerment, or
confidence?
c. What impact has the grant had on their ability to live in the community?

Community Resources and Supports
10. How (if at all) is this grant fostering community engagement or building community for
individuals living with paralysis?
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a. Did your organization form any new partnerships because of the grant? If so, what
were they?
b. Did the grant help you connect participants to other resources outside of your
organization? If so, how?

Concluding Thoughts
11. Would you recommend this grant to other organizations?
a. Overall, what are the benefits of this grant?
b. What are the drawbacks of this grant?
12. What have been the key challenges in implementing this type of grant? What are some
of the primary challenges you’ve experienced in serving individuals living with paralysis
or their caregivers?
13. How has this grant helped you achieve your goals and objectives in serving individuals
living with paralysis or their caregivers?
14. Are there things that we haven’t talked about today that you feel like we really should
know about your experience with the QOL Grants program with the Reeve Foundation?

OMB No: 0985-NEW. This activity is authorized under the Paperwork Reduction Act. Data collected will
be shared with ACL staff, but your responses will be used for research and aggregate reporting purposes
only and will not be used for other non-statistical or non-research purposes. Public reporting burden for
this collection of information is estimated to average 1.50 hours, including the time for reviewing
instructions, searching existing data sources, gathering and maintaining the data needed, and completing
and reviewing the collection of information. Send comments regarding this burden estimate or any other
aspect of this collection of information, including suggestions for reducing this burden, to
evaluation@acl.hhs.gov.

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