Form 1 sickle cell interest survey

Sickle Cell Psychoeducation Support Group: Interest Survey

OMB Control Number: 0925-0648 Expiration Date: 06/2024

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Sickle Cell Psychoeducation Support Group: Interest Survey

The Sickle Cell Branch is considering starting a support group for patients with sickle cell disease. The group will be virtual, using video chat (Microsoft Teams). Each week a staff member would present on a topic related to living life with sickle cell disease and would then open the conversation up to the group members to talk about their experiences. We are interested in your opinion about this group:

1. Would you be interested in attending a virtual support group? Yes No Not Sure

2. What days & times would work for you to attend a virtual group?__________________________________________________________________________________________________________________________________________

3. Do you have access to a smartphone, iPad or computer to attend a virtual group? Yes No Not Sure

4. Which topics would you be interested in having the group cover? (Please circle any topics you are interested in AND rank the 3 topics you are most interested in by writing in 1,2, or 3 next to that topic)

____Staying healthy with Sickle Cell Disease (such as eating healthfully, exercising & getting sleep with sickle cell disease)

____Coping with Chronic Pain

____Challenges with Pain Medication (such as managing side effects, worry about taking too much pain medication, trouble getting enough pain medication, not being believed about pain and so on)

_____Financial Planning (such as saving for retirement, obtaining life insurance and so on)

_____Loss & Grieving (grieving for people and dreams you may have lost due to sickle cell disease)

_____Mindfulness as a way of coping with stress

_____Sickle Cell Identity (what does it mean to my identity to have sickle cell disease? How does this change over time as symptoms change?)

____Dealing with stigma and discrimination

____Thriving and living a valued life with sickle cell disease

____ Other Topics (Please specify)__________________________________________________________________________________________________________________________________________________________________________________________________________________

5. Do you have any other ideas about what you would like a group to look like?

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