Blood & Marrow Stem Cell Transplant

1.  Patient and Caregiver Support Groups

Posted 06-14-2017 09:45
I am interested to see if anyone hosts a support group within their program.  Our program has recently created an education class for patients to attend before their transplant and many patients have reported wanting a group of people to talk to who are going through or have gone through the same things they are going through.  Patients and caregivers are wanting something more specific to BMT rather than community groups.  Please let me know if your program offers or has offered a support program for patients and caregivers and how often you all meet, if you have a curriculum, or any other suggestions!

Thank you so much!!

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Kaitlin Johnson MSN, RN
Patient Educator
Birmingham, AL
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2.  RE: Patient and Caregiver Support Groups

Posted 06-14-2017 18:54
Hi Kaitlin,
Have you reached out to your local leukemia/lymphoma society for assistance in connecting BMT patients?
Best,
Darcy

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Darcy Burbage RN MSN AOCN CBCN
Supportive and Palliative Care Nurse Navigator
Helen F Graham Cancer Center
Newark DE
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3.  RE: Patient and Caregiver Support Groups

Posted 06-15-2017 08:59
Thank you for your feedback!!  Most of the patients that are asking for a support group here at the hospital level are a part of a group outside the hospital.  I think they feel they are missing the support while inside the hospital and I am imagining a support group mixed with pre intra and post transplant patients.  I am just not sure how accessible this will be to create and conduct.  I will reach out to the society's and see if they have tips as well!  Thank you so much!

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Kaitlin Johnson MSN, RN
Patient Educator
Birmingham, AL
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4.  RE: Patient and Caregiver Support Groups

Posted 06-15-2017 10:55
​You could also have your social workers connect with other social workers in other BMT programs.  I believe there is a network of oncology and/or BMT social workers.  Thanks!  Elaine

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Elaine Stenstrup RN MSN AOCNS® BMTCN™
Clinical Nurse Specialist Heme/Onc/BMT Adult and Peds
University of Minnesota Medical Center, Fairview
Woodbury MN
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5.  RE: Patient and Caregiver Support Groups

Posted 06-15-2017 07:47

Our program does patient education with the patients and caregivers individually but, we also offer to connect them with pts who have signed consent to be contacted and act as a sounding board for their experience and a resource to answer questions.  We may connect them with more than one person.  Patient advocates are chosen based on disease, age and gender or other patient preferences.

 

Susan Webb  RN, OCN, BMTCN / Manager BMT Program

Greenville Health System

Cancer Institute

Outpatient Transplant Unit

65 International Drive / Greenville SC 29615

Office: 864-679-4054 / Fax: 864-370-1396

swebb@ghs.org  /  www.ghs.org

 

 

 






6.  RE: Patient and Caregiver Support Groups

Posted 06-15-2017 09:02
Susan,

Thank you so much for your feedback.  That is good to know!  Are the patients you connect them with volunteering to be a sort of mentor to the new patients?  Do you have the mentor or the mentee contact one another?

Thank you!

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Kaitlin Johnson MSN, RN
Patient Educator
Birmingham, AL
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7.  RE: Patient and Caregiver Support Groups

Posted 06-15-2017 14:10
​We used to have a quarterly support group for post transplant patients many years ago. I think it has become more challenging to sustain these types of things given that transplant patients may be spread out across a large geographic area. For what it's worth, nBMT Link? has a peer support program. http://www.nbmtlink.org/programs/#peersupport



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Regina Carlisle BSN, RN, OCN
University Hospitals Seidman Cancer Center
Shaker Heights OH
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8.  RE: Patient and Caregiver Support Groups

Posted 06-21-2017 03:06
​Hi, at previous employment we didn't have a specific support group (we are a single state-wide Allo transplant unit), but had very good support from the state wide Leukaemia Foundation who assisted with accommodation and provided information sessions & ongoing support (especially for the carer when the patient in hospital) and on discharge. Was very effective as patient focused and away from the hospital

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Ron Middleton, CNC
Haematology Care Coordinator
Toowoomba Hospital
Toowoomba, Queensland, Australia
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9.  RE: Patient and Caregiver Support Groups

Posted 06-21-2017 03:20
Hi - the pathways are being introduced into Australia. Not currently use in Queensland; but the state of Victoria has started the process. Have included the web site if of use for members to look at
optimalcare.pathways@cancervic.org.au / or Cancer Council, Victoria, Australia, under Health professionals
thanks ron

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Ron Middleton, CNC
Haematology Care Coordinator
Toowoomba Hospital
Toowoomba, Queensland, Australia
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