Reply To: Sickle Cell Non-compliance

  • Donna Doulton

    Member
    February 16, 2022 at 10:00 am

    Thank you to all for acknowledging this difficulty.  Sometimes its difficult to establish trust with our native born families. 

     

    Just my two cents:  Establishing trust is challenging! We, as well, bring our new families in more frequently Q. 2 months especially if newborn or transfer in from out of state/country, just to get a feel for the family and their educational/SCD needs.  I give a Welcome Binder to each child with information translated to “Translate Google” about:  Important Phone Numbers, When to Call, Where to bring if needing to come to ED; penicillin, spleen, fever etc… It takes a bit more time but I think in the end it is appreciated.  Start small and work up.

     

    If coming from Africa, depending on the country there is a stigmatism about having sickle cell, trying to overcome that or break through that is a huge challenge.  I try to engage the family in the educational portion of my clinic time with them.  I have developed an Educational Coloring Book, I have the sweetest little booklet that a patient wrote about our relationship “Sickle Cell Disease:  Nurse Donna and Me”.  I kept that little booklet close to my heart until the light came on that perhaps this was a good tool to share.  One child with SCD talking to another!  An Educational SCD Deck of cards to play memory/concentration or go fish, SCD bingo, tic tac toe .  I asked one mother from Nigeria to play SCD Bingo with us, she told me she had never played, but playing a game together engages the whole family in learning about SCD.  I believe that some portion of clinic has to be fun.  My patients know that there will be a poke/venipuncture but mostly they are excited to come to clinic to “play” with me.

     

    I would be happy to share any of my educational tools.  Just email me with your physical addresses.  I hope this helps.  Thanks to Jennifer, Shannon & Andrea for what you do to help children & their families with SCD.

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    Original Message:
    Sent: 2/11/2022 3:51:00 PM
    From: Andrea Haggard
    Subject: RE: 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
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    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
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    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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