PROGRAMME DE FORMATION POUR LES ANIMATEURS DE GROUPES DE SOUTIEN POUR PERSONNES ATTEINTES DE SCLÉRODERMIE (SPIN-SSLED)
L’animation d’un groupe de soutien n’est pas une tâche facile.
De nombreux animateurs se sentent dépassés par leur rôle et certains d’entre eux doivent dissoudre leur groupe à cause de cela. Pour aider à soutenir ces animateurs et favoriser l’implication de nouveaux animateurs pour qu’ils puissent mettre sur pied leur propre groupe de soutien, le Réseau d’intervention centré sur le patient sclérodermique (SPIN) a créé le Programme de formation pour les animateurs de groupes de soutien pour personnes atteintes de sclérodermie (SPIN-SSLED). Ce programme de formation, offert par vidéoconférence, fournira des renseignements et des ressources aux animateurs pour les aider à se sentir plus à l’aise, plus confiants et mieux soutenus dans leur rôle, afin qu’ils puissent offrir une expérience plus positive aux membres de leur groupe.
Introduction
Témoignages d’animateurs de groupes de soutien
À propos du programme SPIN-SSLED
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13 séances hebdomadaires de 60 à 90 minutes, présentées par un animateur qualifié
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Chaque semaine, les participants cheminent à travers un nouveau module qui aborde un aspect de l’animation d’un groupe de soutien, comme la structuration d’une réunion de groupe, le recrutement de nouveaux membres, la promotion d’une culture de groupe positive, l’importance du bien-être de l’animateur, et bien d’autres sujets
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Les participants peuvent assister aux séances par vidéoconférence dans le confort de leur foyer
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Les ressources supplémentaires comprennent :
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Un cahier d’exercices qui résume tous les modules.
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Un forum en ligne où les participants peuvent discuter entre eux de ce qu’ils ont appris.
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Un centre de ressources en ligne comprenant des vidéos éducatives et des idées d'activités de groupe de soutien.
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À la fin des treize semaines de formation, les participants reçoivent un certificat attestant qu’ils ont terminé le programme avec succès
Aimeriez-vous essayer le programme SPIN-SSLED?
Le SPIN effectue actuellement des essais cliniques visant à évaluer les retombées du programme SPIN-SSLED en partenariat avec des organisations de patients.
Vous pourriez être admissible à participer à l’essai si vous répondez aux critères suivants :
1. Vous êtes un animateur(trice) de groupe de soutien pour la sclérodermie ou vous travaillez/souhaitez travailler en collaboration avec une association de patients pour démarrer un groupe.
2. Vous êtes âgé(e) d’au moins 18 ans.
3. Vous avez un accès régulier à un ordinateur et à une connexion Internet.
Si vous répondez à ces trois critères et que vous souhaitez essayer le programme SPIN-SSLED, veuillez envoyer un courriel à spinssled@gmail.com en indiquant (1) votre nom complet et (2) le nom de votre association de patients locale.
Virtual Support Group Central Database
One of the goals of the SPIN-SSLED Program is training new or current support group leaders to run virtual support groups accessible to patients from different geographical locations, especially where no in-person support group exists. During the current COVID-19 pandemic, virtual support groups are great tools to help receive emotional support and connect with other individuals living with scleroderma. Please see a list of available virtual scleroderma support groups run by SPIN-SSLED graduates below. The table will be updated periodically. If you are interested in joining one of the virtual support groups listed below, please contact the responsible person for more information.
Group name | Patient organization/chapter | Who is eligible to participate? | Meeting frequency | Meeting day | Meeting time | Contact person | Email address | Phone number | Notes |
|---|---|---|---|---|---|---|---|---|---|
Wellington Scleroderma Support Group | Scleroderma New Zealand | We welcome any person with scleroderma and caregivers/loved ones. People with scleroderma, men with scleroderma, young adults with scleroderma‚ caregivers of people with scleroderma. | Sometimes more often as the need is required. | Saturday | 1:30 pm New Zealand Daylight Time | Dianne Purdie | diannepurdie@xtra.co.nz | 64-04-479-5548 | Our meetings are for support and sharing experiences with managing scleroderma. We can get along speakers if that is what the people would like. We are a cheerful welcoming group of people. |
Newnan-Peachtreecity Scleroderma Group | National Scleroderma Foundation, Georgia | Scleroderma patients, caregivers, family members and invited guests. | Every month | Sunday | 3:00 - 5:00 pm Eastern time | Demetra Newton | demetranewton@yahoo.com | 470-303-0234 | We also welcome others who don't have scleroderma such as Lupus patients, Sjogrens, Raynauds and etc. |
Doylestown Scleroderma | SFDV.org | Anyone with scleroderma and their caregivers/loved ones. | Every month | Tuesday | 6:00 - 7:30 pm Eastern time | Kelly Kelly | kelly.a.kelly@comcast.net | 1-215-805-6680 | We meet 4th Friday of every month via Zoom platform. |
Virtual Education Sessions | Scleroderma Victoria | Anyone with scleroderma and their caregivers/loved ones. | Every month | Saturday | 10:30 am Australian Eastern time | Louise Inglese | events@sclerodermavictoria.com.au | 61-3-9231-3651 | The sessions will be held on the second Saturday of each month at 10:30 am. Hear from experts, stay up to date on research and share knowledge on many appropriate topics. |
Scleroderma Awareness Philippines | Scleroderma Society of the Philippines | Anyone with scleroderma and their caregivers/loved ones. | Every 3 months | Sunday | 1:00 pm Pacific time | Catherine Policarpio | chie.policarpio@gmail.com | 63-2917817244 | Our aim is to raise awareness about Scleroderma / Systemic Sclerosis in the Philippines. |
Scleroderma SASK | Scleroderma Saskatchewan | Anyone with scleroderma and their caregivers/loved ones. | Every 6 months | Wednesday | 1:00 pm Central time | Tracey Magee | tracey.scleroderma@sasktel.net | 1-306-539-3291 | Hoping to move to more meetings per year now with the virtual option. Day of the week and time subject to change. |
Scleroderma Philippines Support Group | Scleroderma Philippines | Anyone with scleroderma and their family from the Philippines or of Filipino descent. | Every month | Sunday | 1:00 pm Philippines Time | Rowena Lou Ortiz | rowena_ortiz2000@yahoo.com | 63-927-021-7017 | Aside form the monthly webinars/meetings, we also have an active closed group on Facebook, https://www.facebook.com/groups/2146521595452709 |
Steel City Support Group | Scleroderma Foundation, Western Pennsylvania Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Saturday | 3:00 pm Eastern time | Tim Graettinger | tgraettinger@verizon.net | 1-724-743-3462 | We welcome young adults, but there are none currently in the group. |
Multiple, see Tri-State Chapter website calendar. | Scleroderma Foundation, Tri-State Chapter | Anyone with scleroderma and their caregivers/loved ones. | See Tri-State Chapter calendar. | Saturday | See Tri-State Chapter calendar. | April Roberts | aroberts@scleroderma.org | 1-607-723-2239 | The Tri-State Chapter has anywhere from 5-10 meetings per month and we are open to anyone. We list them on the Tri-State website calendar. I am able to give you specifics to each meeting. April Roberts is the Office Administrator and Ariel Galvez is the Program Services Manager. |
Rochester Scleroderma Support Group | Scleroderma Foundation, Tri-State Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month, from March to November | Saturday | 1:00 - 3:30 pm Pacific time | Edith D. Reynolds | ladydi2u1956@yahoo.com | 1-585-309-3819 | Edith D. Reynolds is the co-leader. Marilyn Sibley is the Support Group Leader. |
SYNC (Scleroderma Young Adults Needing Connection) | Scleroderma Foundation, Tri-State Chapter | Anyone with scleroderma between the ages of 18-42. | Every month | Friday | 7:00 - 8:30 pm Eastern time | Amy Gietzen | agietzen@scleroderma.org | 1-716-479-0756 | We are more of a social group not a normal structured group we meet to connect with others who are going through the same thing. |
New York City Support Group | Scleroderma Foundation, Tri-State Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Wednesday | 6:00 pm Eastern time | Zeba Hyder | NYNY@sclerodermatristate.org | 1-212-777-2832 | The sessions are held on every first Wednesday of the month. |
Virtual Support Group hosted by DFW Team | Scleroderma Foundation, Texas Bluebonnet Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Sunday | 2:00 pm Central time | Diane Lee | dlee@scleroderma.org | 1-817-637-5485 | We meet on the 2nd Sunday of the Month. Other support group co-leaders are Lilly Witherspoon and Alexis Harrison. |
Virtual Young Adult Support Group | Scleroderma Foundation, Southern California Chapter | Young adults with scleroderma. | Every month | Monday | 7:00 pm Pacific time | Tina Burger | tburger@scleroderma.org | 1-310-699-7290 | - |
Los Angeles Scleroderma Support Group | Scleroderma Foundation, Southern California Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Saturday | 10:00 am Pacific time | Tina Burger | tburger@scleroderma.org | 1-310-699-7290 | There are several other groups per city and monthly combined meetings for all 13 support groups in Southern California. |
Scleroderma Virtual Support Group | Scleroderma Foundation, Southeast Florida Chapter | Any person with scleroderma and caregivers/loved ones | Every month | Saturday | 11:00 am Eastern time | Beth Taber | Go to website: scleroderma.org/sefl | 1-305-801-1837 | Some meetings have speakers but not all. Recently we had a virtual patient education day with three speakers a Rheumatologist, a GI doctor, and a mental health professional. |
Miami Bilingual Support Group | Scleroderma Foundation, Southeast Florida Chapter | Bilingual (English & Spanish) or Spanish-speaking only scleroderma patients and their caregivers. | Every month | Friday | 11:00 am Eastern Time | Monica Ramirez | Miamiradgroup@gmail.com | 1-786-300-1242 | - |
Southeast Florida Support Group | Scleroderma Foundation, Southeast Florida Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Saturday | 11:00 am Eastern time | Jessica Massengale | Sclerostrong@gmail.com | 1-954-298-8432 | - |
Granite State Support Group | Scleroderma Foundation, New England Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Saturday | 10:00 am Eastern time | Carla E King | carla.king@comcast.net | 1-978-884-4866 | We would love to include new folks from all around! |
Northwest Chapter | Scleroderma Foundation, Northwest Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Friday | 10:00 - 11:30 am Pacific time | Vicki L Hollmann | vickihollmann@gmail.com | 1-360-731-7563 | We try to give everyone a chance to share their experiences and give support and encouragement. |
Dayton Area Support Group | Scleroderma Foundation, Ohio Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every 2 months | Saturday | 10:00 am Eastern time | Penny Davis | Dayton-sg@sfohio.org | 937-554-1425 | Very friendly but small group |
Charleston Area Scleroderma Patient Support Group | Scleroderma Foundation, South Carolina Scleroderma Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Saturday | 11:00 am - 12:30pm Eastern time | Patti Newman | pttnewman@gmail.com | 1-843-817-2038 | We welcome scleroderma patients and their caregivers, regardless of what kind of scleroderma they have, how long they've been diagnosed, age, gender, color, ethnicity, etc. We want everyone to feel welcome and included. Please contact Patti Newman and Sarah Budd (co-facilitator, chimerical1@hotmail.com, 1-843-452-3521). |
Fall River/ Bristol County Support Group | Scleroderma Foundation, New England Chapter | Anyone with scleroderma and their caregivers. | Every month | Wednesday | 7:00 pm Eastern time | Donna Bernier | donnabdab2@hotmail.com | 1-774-488-6775 | We started going virtual in July 2020. |
Des Moines/Ames Scleroderma Support Group | Scleroderma Foundation, Heartland Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Tuesday | 6:30 pm Central time | Barbara Burke | d_bburke@netins.net | 1-515-321-0621 | - |
Autoimmune and Scleroderma Support Group | Scleroderma Foundation, Michigan Chapter | Any scleroderma or autoimmune patient, their family, friends, caregivers. | Every month | Saturday | 9:30 - 11:30 am Eastern time | Peggy Collins | peggyscollins@hotmail.com | 1-810-417-0926 | We are a pretty inclusive group with members from all over the US, plus some in other countries. In addition to the monthly support group, people can be added to our private Messenger group for added connections throughout the month. |
Boston Area Support Group | Scleroderma Foundation, New England Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every month | Tuesday | 7:00 - 9:00 pm Eastern time | Mary McClay | sclerodermaboston@gmail.com | 1-774-222-2820 | Our in person meetings in the past were held from 2:00 - 4:00 p.m. on the third Sunday of every month. Even when we can meet in person again, we still intend to keep a virtual meeting as well. |
Omaha Scleroderma Support Group | Scleroderma Foundation, Heartland Chapter | Anyone with scleroderma, their family, friends, or caregivers for a friend/relative looking to know more about the disease. | Every 2 months | Tuesday | 6:30 - 8:30 pm Central time | Jackie Latka | jackiehughes@hotmail.com | 1-402-680-135 | We meet on the 3rd Tuesday of every other month beginning in January, March, May, etc. |
West Suburban Chicago Scleroderma Support Group | Scleroderma Foundation, Greater Chicago Chapter | Anyone with scleroderma, their family, and friends, of any age. | Every month, 9 months/year | Saturday | We rotate from Monday 7:00 pm, Thursday 2:00 pm, to Saturday 10:00 am Central time | Edie Northfield | WSubChiSclero@yahoo.com | 1-630-212-3057 | There are no children in our group. |
North Shore Scleroderma Support Group | Scleroderma Foundation, Greater Chicago Chapter | Anyone with scleroderma and their caregivers/loved ones. | Every 2 months | Saturday | 10:00 am - 12:00 pm Central time | Franny Kaplan | nsscleroderma@gmail.com | 1-847-533-5075 | We are meeting on Zoom and may meet more often in winter. |
Last updated on November 29th, 2022
Financement du programme SPIN-SSLED
Le programme SPIN-SSLED a été financé par la Société de Sclérodermie de l’Ontario, l'Initiative Canadienne pour des Résultats en Soins Rhumatologiques et les Instituts de Recherche en Santé du Canada.
