Reply To: Sickle Cell Non-compliance

  • Lana Tacey

    Member
    February 17, 2022 at 11:02 am

    thank you for sharing your resources as we are always struggling with finding good information for our families. By chance does anyone have information on exjade in arabic? I will also contact the pharmaceutical company to see if they have and if they dont if they can develop it.. Along with how to give.

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    Lana Tacey, CPON,RN
    Clinical Nurse Specialist
    Calgary, AB
    Canada
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    Original Message:
    Sent: 02-17-2022 09:43 AM
    From: Shannon Cole
    Subject: Sickle Cell Non-compliance

    Thanks! I like this hydroxyurea sheet! Ill stay in touch as we develop more resources Shannon

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    Shannon Cole RN CPON
    Maine Children’s Cancer Program
    Scarborough Maine
    coles5@mmc.org
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    Original Message:
    Sent: 02-11-2022 02:51 PM
    From: Andrea Haggard
    Subject: Sickle Cell Non-compliance

    Hi Shannon,

    Thank you so much for the feedback. I am attaching a great resource we recently found translated in Swahili. This written material discusses basic sickle cell overview including disease management, pain crisis, when to call, and hydroxyurea. Hopefully, this is useful for your team as well. We are currently struggling with translators from the Congo, because they are refusing to get vaccinated. We have been using Cyracom, however connectivity and dialect seem to complicate that method.

    From New South Wales (Australia) Multicultural Health Service –

    Sickle Cell Disease Fact Sheet (English) – https://www.mhcs.health.nsw.gov.au/publications/8260/ahs-8260-eng.pdf/@@display-file/file/ahs-8260-eng.pdf

    Sickle Cell Disease Fact Sheet (Swahili) – https://www.mhcs.health.nsw.gov.au/publications/8260/ahs-8260-swa.pdf/@@display-file/file/AHS-8260-SWA.pdf

     

    From Pacific Sickle Cell Regional Collaborative –

    Pediatric Hydroxyurea Brochure (English) – https://pacificscd.org/wp-content/uploads/2021/01/HU-BROCHURE-PEDS.fnl-layout.pdf

    Pediatric Hydroxyurea Brochure (Swahili) – https://pacificscd.org/wp-content/uploads/2021/01/HU-BROCHURE-PEDS.fnl-09.2020_SW.pdf

    Thanks,

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    Andrea Haggard, APRN,RN
    Lexington, KY
    United States

    Original Message:
    Sent: 02-04-2022 07:39 PM
    From: Shannon Cole
    Subject: Sickle Cell Non-compliance

    Hi!

    I’m so glad you brought this up I don’t have a solution but we struggle with the same issues with our population here in Maine mostly from The Congo.Generally overtime we are able to build a relationship and start seeing better compliance. We just try to start slow and keep them coming back to clinic. It’s hard to find teaching materials in Portuguese and Lingala but are working on a new simple HU teaching sheet to have translated in several languages. We do have a few interpreters that  consistently work with us. I’m interested in hearing from others and would also love to talk more and share materials and ideas. 

    Shannon Cole CPHON
    Maine Children’s Cancer Program
    coles5@mmc.org 

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    Shannon Cole RN CPON
    Maine Children’s Cancer Program
    Scarborough Maine
    coles5@mmc.org

    Original Message:
    Sent: 02-04-2022 09:48 AM
    From: Andrea Haggard
    Subject: Sickle Cell Non-compliance

    Hello all,

    I am interested in how other facilities are handling sickle cell patients and non-compliance. Specifically, concerning refugee patients from the Congo. How are your facilities overcoming language and cultural barriers to promote compliance? Are you seeing the same trends in non-compliance at your institution?  I am looking for better ways to help serve this population.

    Thank you,

    Andrea Haggard APRN
    andrea.haggard@uky.edu
    Kentucky Children’s Hospital

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    Andrea Haggard, APRN,RN
    Lexington, KY
    United States
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