#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients filling in for Nykema today and looking forward to chatting with you all #patientchat |
 | Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat Hi all! Annie-Danielle here (Ma vie de zèbre—My Zebra Life), francophone voice for rare disease from Montréal (Québec, Canada). So glad to be here after months of my schedule not allowing me to! #patientchat |
| Patient Chat @patientchat @ADanGrenier Hi Annie-Danielle! So glad you could join us today #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
 | Lorrie @LorrieForseth @patientchat Hi & good morning from Vancouver Canada 👋, I advocate for greater awareness around Epilepsy, I hope to learn & educate others through my family's journey . #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Patient Chat @patientchat @Madvocator Hi Nikki! #patientchat |
| Patient Chat @patientchat @LorrieForseth Hi Lorrie, happy to see you here again! #patientchat |
| Lorrie @LorrieForseth @patientchat Happy to participate again :) #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Let’s Talk Burnout: Patients and Care Partners https://t.co/dE6Rl0C57K https://t.co/lH7rMDs3oh |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: What does “burnout” look like for you? #patientchat https://t.co/lT2oAw3Ugi |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T1 I know I need to take better care of my mental health when I get irritable, need to kick myself to do stuff (usually have trouble slowing down), have even more cognitive issues, and when things seem like a mountain that I know wouldn't normally. #patientchat |
| Lorrie @LorrieForseth @patientchat A1: Burnout to be looks like ; loss of interest, not communicating , loss of appetite, just going through the motions but not really wanting to do anything at all . It could be different for everyone. #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What does “burnout” look like for you? #patientchat https://t.co/lT2oAw3Ugi |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @LorrieForseth @patientchat Yes, it’s important to know yourself and be on the lookout! #patientchat |
| Patient Chat @patientchat T2: Does burnout look differently for patients vs. care partners? #patientchat https://t.co/IHani8VpK6 |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: Does burnout look differently for patients vs. care partners? #patientchat https://t.co/IHani8VpK6 |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @Madvocator @patientchat Ah yes, when you feel like new challenges are way too much (that usually wouldn’t be) it’s a great clue! #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T2 Don't think it looks different. Also think both patient & care partner try to hide their emotions so the other party doesn't feel guilty, which can lead to burnout too. The cause is the same as well (illness). The difference is in the relationship w/the issue. #patientchat |
| Lorrie @LorrieForseth @patientchat A2 : caregivers vs patient burnout may be similar due to exhaustion but you cannot really tell what a patient is experiencing, it's their story to tell only, a caregiver can only share their own experiences of themselves & what they witness . #Epilepsy #patientchat |
| Patient Chat @patientchat RT @ADanGrenier: @patientchat T2 Don't think it looks different. Also think both patient & care partner try to hide their emotions so the other party doesn't feel guilty, which can lead to burnout too. The cause is the same as well (illness). The difference is in the relationship w/the issue. #patientchat |
| Lorrie @LorrieForseth @ADanGrenier @patientchat 100% #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
 | Laurie Reed @LReedptadvocate @patientchat T1: From the interviews I've conducted with patients, burnout looks like not wanting to try yet another treatment option b/c 'don't know if I can go through that again,' 'I just need to take a break' esp. when efficacy unclear. #patientchat |
| Patient Chat @patientchat T3: Can patient/care partner burnout impact your or your loved one’s quality of care? #patientchat https://t.co/h7UOMU8jT3 |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @LReedsbooks @patientchat Oh so true!!! Didn’t think of it that way, but definitely times when I just feel I’ve had enough and would like to sleep for like a week and not think about any of my health problems. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T3 Definitely can have an impact! Can lead to isolation, less empathy, more fatigue. Pts can have flare-ups, carers can have physical symptoms/difficulty helping physically & emotionally. Also difficult to advocate for quality of care, which needs energy & time. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2: Good question. Burnout is burnout -- fatigue, depression, lack of interest/energy/appetite -- whether it's patients, caregivers, or physicians. The triggers, the how you get there, may be different. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @LReedsbooks @patientchat Thank you for reminding us about physicians’ burnout. They are carers as well & definitely can suffer from burnout too. #patientchat |
| Lorrie @LorrieForseth @patientchat A3 : You can't get water from an empty cup, if you're not 100% , how can you be 100% for the patient who relies on you . #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3: Absolutely! Burnout impacts everything. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... #patientchat |
| Patient Chat @patientchat T4: Are there any services or systems in place to help mitigate burnout? If not, what should be in place? #patientchat https://t.co/tXaKo5EzXp |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @LReedsbooks @patientchat Well put. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T4a There are resources but not always easy to get services in a timely manner. Having an informal support system is important (support groups, friends & family). You need to think about building that before you need it, though, and use it when you do need it. #patientchat |
| Patient Chat @patientchat RT @ADanGrenier: @patientchat T4a There are resources but not always easy to get services in a timely manner. Having an informal support system is important (support groups, friends & family). You need to think about building that before you need it, though, and use it when you do need it. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T4b People should reach out to patients and care partners, once in awhile, to check on them and let them ventilate their emotions. Offer to just listen about how it's going. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @Madvocator @patientchat #patientchat https://t.co/UVNXYlriWC |
| Lorrie @LorrieForseth @patientchat A4 : When I googled caregiver burn out,I found that you're to ask for help in way of family & friends , I'm thinking after reading that, many people may not have that option especially during a pandemic. You're kind of reaching out to you doctor for advice after that #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @LorrieForseth @patientchat The help needs to happen before burnout… sadly it’s rarely talked about, so people end up at the end of their rope. Always a way to find help (not necessarily easy), but always easier when you aren’t at the burnout point. #patientchat |
| Patient Chat @patientchat T5: What would you like healthcare providers to know about patient/care partner burnout? #patientchat https://t.co/vMujavndld |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T5 That being used to being sick & generally dealing well doesn't mean one can't have a hard time & need help so as to avoid burnout. That care partners need to be included in the conversation because they live through it all & can burnout too. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: What would you like healthcare providers to know about patient/care partner burnout? #patientchat https://t.co/vMujavndld |
| Lorrie @LorrieForseth @ADanGrenier @patientchat Agreed , take care of yourself first so you can take care of others . Self care isn't selfish #patientchat :) |
| Laurie Reed @LReedptadvocate @patientchat T4: Few. Illness is often such a lonely experience, no one else can go thr. it but you. The most impt. thing to do is to incr. awareness a/b burnout so patients see what they're experiencing as 'normal', others have felt as they do and have found ways to go on. #patientchat |
| Laurie Reed @LReedptadvocate Really impt. point. Build that support network before you need it b/c you will need it. #patientchat |
| Patient Chat @patientchat “Self care isn’t selfish” 👏🏼👏🏼 #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @LReedsbooks @patientchat Lots of guilt, too. #patientchat |
| Lorrie @LorrieForseth @patientchat T5: When a person comes in to ask their healthcare provider for help , the most important thing is , the patient or caregiver wants to feel they have been heard, not just given pills. It should be talked about as often as it needs & to find proper resources to help. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T5: Increased awareness and understanding that burnout happens for both patients and caregivers. Pointing people to resources that may be available, reminding people to set up support networks, and realizing that they are part of that network. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @Madvocator @patientchat Care partners might also hide it by fear of hurting the patient’s feelings, as if it meant they feel bad because of them. But the issue isn’t the patient, it’s the health problem. This needs to be repeated. Guilt needs to be evacuated from the equation. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat CT Good timing for this topic, as my spouse and I are in our 19th month of complete isolation due to COVID and me being both #immunocompromised and #HighRisk We are lucky in many ways in this, but it’s been hard lately. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime! |
| Patient Chat @patientchat We hope to see you Friday 10/29 for an “Ask Me Anything (AMA) Part 2” Empowered #patientchat with special guest @JBBC https://t.co/HyKJh8c0Bq https://t.co/QJsi0qFJi8 |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Laurie Reed @LReedptadvocate @patientchat CT - The importance of building that support network early and even when a support network is in place, it's still possible to experience burnout and that's okay. It's a setback, and after a pause, find ways to continue moving forward. #patientchat |
| Lorrie @LorrieForseth @patientchat C/T : I can't believe this chat is almost over , always so informative. I learned, I need to take care of me so I can be there for others , reach out for help when needed. Be an ear for someone who may be struggling. Most importantly: be kind to yourself & others #patientchat |
| Laurie Reed @LReedptadvocate @ADanGrenier @patientchat I'm so sorry. Covid stinks. #patientchat |
 | Lou Waters (she/her) 🏴🇪🇺🏳️🌈🏳️⚧ @LouWaters_QI RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/EcT9iwfHvi |
#patientchat content from Twitter.