2023 NE Needs Assessment
1.
To ensure that you are receiving the most up to date and accurate information from us, please provide us with your current contact information (name, phone, address, email).
2.
What is your relationship to the person diagnosed with a blood disorder? Please select all that apply:
(Required.)
Self
Parent
Spouse
Child
Grandparent
Aunt/Uncle
Other (please specify)
3.
How do you describe yourself? Please select all that apply:
(Required.)
White or Caucasian
Black or African American
Native American or Alaska Native
Native Hawaiian or Pacific Islander
Prefer Not to Answer
Other (please specify)
4.
Are you Hispanic or Latino?
(Required.)
Yes
No
Prefer not to answer
5.
What is the primary language spoken in your home?
(Required.)
English
Spanish
French
Prefer not to answer
Other (please specify)
6.
What is the highest level of education that you have completed?
(Required.)
Less than a high school degree
High school degree or GED
Some college
Associate degree
Bachelor's degree
Graduate degree
Prefer not to answer
7.
What is your current employment status? Select all that apply:
(Required.)
Employed Part Time
Employed Full Time
Unemployed and looking for work
Unemployed and not looking for work
Student
Retired
Homemaker
Self Employed
Unable to work
Prefer not to answer
Other (please specify)
8.
Which blood disorder affects you or your family?
(Required.)
Hemophilia A
Hemophilia B
Hemophilia C
von Willebrand Disease
Platelet Disorders
Sickle Cell
Other (please specify)
9.
If you selected Hemophilia A, B, or von Willebrand Disease, have you or your family member(s) been diagnosed with an inhibitor?
(Required.)
Yes
No
Not Applicable
10.
Please list the family members in your household that have been diagnosed and how they are related to you. List yourself if you are affected.
(Required.)
11.
Who is the main healthcare provider that treats your bleeding disorder?
(Required.)
University of Nebraska Medical Center (UNMC)
Children's Hospital
A hematologist (bleeding disorder specialist) at another location
Primary care provider/pediatrician
Other (please specify)
12.
What was your total combined family income last year?
(Required.)
Under $20,000
$20,000 - $34,999
$35,000 - $49,999
$50,000 - $74,999
$75,000 - $99,999
$100,000 +
Prefer not to answer
13.
In the past year, have you or other family members in your household been unable to get or pay for any of the following? Select all that apply:
(Required.)
Food
Utilities (electricity, water, heat)
Phone
Medical insurance
Bleeding disorders medication
Other medications
Appointments with healthcare providers
Clothing
Child care
Housing
My family did not have unmet needs
Other (please specify)
14.
Do you or your family currently struggle with obtaining one of the following? Select all that apply:
(Required.)
Work
Transportation
Health insurance
Not Applicable
Other (please specify)
15.
How many chapter events have you attended
(Required.)
0
1
2
3
4
5 or more
16.
Do you and your family feel welcome at Chapter events?
(Required.)
Yes
No
Sometimes
17.
If you answered sometimes or no, what could we do to make you feel more welcome?
18.
In what areas could the Chapter improve?
(Required.)
19.
In what areas are the Chapter doing well?
(Required.)
20.
What has prevented you and your family from attending Chapter events in the past? Select all that apply:
(Required.)
Finances
Child care
Not Interested
Health Concerns
Location
Transportation
Conflicting Obligations
Not Applicable
Other (please specify)
21.
How does your household currently receive Chapter information?
(Required.)
US Mail
Email
Facebook
Instagram
Twitter
Texts
Newsletters
22.
How would you like to receive invitations to events?
23.
What service might we offer that is not currently available?
(Required.)
24.
Has the Covid-19 pandemic impacted your family in any of the following ways? Select all that apply:
(Required.)
Income loss
Healthcare coverage loss
Housing loss
Poor mental health
Covid diagnosis
Covid hospitalization
Quarentine due to exposure to Covid
Family wasn't impacted
Other (please specify)
25.
How often are you able to see a healthcare provider (doctor or nurse) that is knowledgeable in treating the blood disorder in your family?
(Required.)
Always
Usually
Sometimes
Rarely
Never
26.
In a blood disorder emergency, how often are you able to see a healthcare provider (doctor or nurse) that is knowledgeable in treating the person in your family that is affected by a blood disorder?
(Required.)
Always
Usually
Sometimes
Rarely
Never
27.
How many blood disorder emergencies have you experienced in the past 12 months?
(Required.)
0
1 - 2
3 - 4
5 or more
28.
Do you feel that you have a good understanding of the way your insurance works?
(Required.)
Always
Usually
Sometimes
Rarely
Never
29.
Over the past 12 months, how often have these problems impact impacted getting blood disorder medication for your family?
(Required.)
Always
Usually
Sometimes
Rarely
Never
Cost
Always
Usually
Sometimes
Rarely
Never
Insurance issues
Always
Usually
Sometimes
Rarely
Never
Doctor or nurse wants me to take a different medication
Always
Usually
Sometimes
Rarely
Never
30.
How often do you have someone to talk to for support in a time of need?
(Required.)
Always
Usually
Sometimes
Rarely
Never
31.
For the person(s) with the blood disorder, what has been the hardest or most frustrating part of dealing with the disorder?
(Required.)
32.
For the person(s) who are taking care of or living with the person who has the blood disorder, what is the hardest and most frustrating part of dealing with the disorder?
(Required.)
33.
Additional Information (Optional) – Please use this space to provide any additional information that you would like to share with us.