Home Forums Find A Support Organization US Southeast How to engage survivors? Your Thoughts?

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    Daniel Gu
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    To engage survivors and families will be a major challenge. We have seen this in the US for all these years. To create an effective stroke care model, we need the stroke community to become much more responsive and proactive. What will motivate survivors and families to ask more questions? Be more willing to join discussions and even just to share frustration they are experiencing? SA Team, Zambia team, what do you guys see? Adams, what do you see in Ghana? What about the American teams? Any thoughts?
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    • Anonymous
      Inactive

      Many men are not open to this type of rehab . I believe we have to lead by example . Hats off to you….More people need to be educated on administering aspirin before the hospital. I”m definitely using this important tip in stroke awareness campaigns .Thank you.
      RegardsAvashna Moodley CEOwww.hospital2home.co.za

    • Anonymous
      Inactive

      Good morning comrades, the first thing which can help us to win the trust of stroke survivors and their families is to get down to where they are, visiting them in person first not just on phone, whatsapp or internet, not everyone has a phone here in Zambia. we need a better model which will involve Everyone for them to know we care we are there for them that’s my digestion. And we have started that her^ although on a slow pace.

    • Anonymous
      Inactive

      Hi Avashna I am going to try and get him to see a psychologist as he also suffered a stroke 4 years after my stroke and because I knew the signs when he got back from work and I saw the drooping face I first got him to take an aspirin then took him to the hospital he was there for 4  days only and it wasn’t a major stroke his artery on the neck had a plaque that had made the flow of blood to the brain difficult and the doctor said that me administering aspirin may has saved his life by thinning the blood and allowing it to flow easily to the brain. He fortunately didn’t need any physical therapy as he was okay a few days later and went back to work after a week. 

    • Anonymous
      Inactive

      My husband was exactly like yours , he internalised his emotions and refused to see a psychologist. He was definitely in denial and I refused to pretend that my stroke never happened . Besides , my son was 13 years old when he saw me have my first seizure and that look of complete fear on his face never left me .So when I was well , I took myself and my kids to a psychologist . My husband still needed a lot of coxing before he followed suit after a few months . It helped us ,as a family , tremendously. It still is my safe place to chat about anything and everything . Psychology is an important part of rehab for a stroke survivor , as is OT or Physio . I found out the hard way that stopping any rehab leads to regression. It will be 9 years , on 24 December 2020 , since my stroke and I owe my constant recovery to my rehab team. 
      RegardsAvashna Moodley CEOwww.hospital2home.co.za

    • Daniel Gu
      Participant
      Kele, I can vividly related to your experience. It is not easy. But the first thing leading to any psychological restoration after a trauma is to talk about it and let out the frustration that is buried deep in us. It is not opening wounds. We should not be shy of talking about it among those who understands what we are going through.

    • Daniel Gu
      Participant
      Vera, can you try this? To remove yourself from future notifications, simply click on the link provided in the email. It says: “To stop receiving notifications…”
      Everyone can stop notification going to them with one click.

    • Anonymous
      Inactive

      I can talk about the pain that I went through after my stroke and what my family went through on the other hand my husband and kids were deeply affected by my stroke and unfortunately my husband doesn’t believe in talking about it he says that it brings back all the emotions that he went through during that time. I have tried to get him to at least talk to a psychologist about it but he has refused to do it. I have only been able to get him to open up about the pain he went through and it was after a long drive back from a funeral and we passed the hospital were I was hospitalized and he happened to remember the times that he was in and out of the hospital visiting me on a daily basis for 2 months and us talking about it he ended up breaking down and he was telling me about how scared he was and thinking about what would happen to him and the kids should I have died. To this day it still makes him emotional when he remembers how helpless he felt during that time and especially when my kids said can he please do everything in his power to make sure that I survive even if it means selling our house to pay for the hospital bills just to keep me alive. We had just been at our current house for 2 years when I had the stroke and the kids were saying that they wouldn’t mind moving to a squatter camp and have the house sold to pay for the hospital but luckily it didn’t get to that even though we had recently changed our medical aid because the old one and the new are managed by the same company they were able to pay for my medical bills. I remember that when I left the hospital before going to the Rehabilitation hospital the bill was already nearing R1 million.  The only person that I saw my husband being able to openly talk to about my stroke is a fellow stroke survivor who has something about him that gets people to open up and share their deepest fears with him. His name is Barry Nkosi he is part of our team at Stroke Survivors Foundation. 

    • Anonymous
      Inactive

      Please relive me from this list. Thank you
       
      From: Strokefocus Member Services <delivery@strokefocus.net>

      Sent: Friday, May 29, 2020 4:07 PM

      To: John Bertilacchi <john@bertilacchiins.com>

      Subject: veramore replied to “How to engage survivors? Your Thoughts?” on Support Orgs: “Please relive me from this list. Thank you.  Sent from my iPhone ”
       

    • Anonymous
      Inactive

      Please relive me from this list. Thank you. 

      Sent from my iPhone
      

    • Anonymous
      Inactive

      For me having this platform is a good start and we have to encourage our families to get involved in the discussions without fear of being judged by the society and the survivors as well. 

    • It’s just really important that the discussion don’t spiral into gripe sessions. We definitely need to express our feelings but then be encouraged and lifted up, not simply have others wallow in the mud with us. A huge part of recovery is attitude. 

    • Daniel Gu
      Participant
      Avashna, thank you so much for the encouragement. That means a lot to us. 
      What do you think about opening up a forum to let survivors and families freely expressing our frustration without being afraid of getting judged. The first step to build trust and comfort is to let people talk honestly and openly  about their feelings. Your thoughts?

    • Daniel Gu
      Participant
      What about adding a forum which let survivors and families open express our grief. Look, stroke and TBI suck. It is the most traumatic experience one could get. More and more survivors are younger, to whom stroke and TBI are overwhelming. There is an oversupply of positive thinking. There is just not enough place for people to honestly and openly express their grief. The best way to help people think positively is to let their grief out. Let’s encourage people to openly talk about their challenges without being afraid of being judged. What does everyone think about this idea?

    • Anonymous
      Inactive

      Physical and psychological inability to express their emotions because of their current new state.Not all stroke survivors want or feel a need to reach out to better the stroke survivor community . They probably feel the family support and comfort is all they need .I’ve learnt , through CHO support groups , most stroke survivors are comfortable with their recovery . And others would try an rehabilitation they can to reach their full recovery potential .
      RegardsAvashna Moodley CEOwww.hospital2home.co.za

    • Anonymous
      Inactive

      From my experience , there’s constant questions but there was never a platform for us survivors to ask these questions. Thanks to Stroke focus we now have a safe platform.
      RegardsAvashna Moodley CEOwww.hospital2home.co.za

    • Anonymous
      Inactive

      It took me a few years to gain my confidence back . Even now , I can be talking well and miss pronounce a single word and that will send me into a no-confidence zone. Also my energy levels are not constant everyday hence I opt to work on my non-profit part time and from home. Maybe , this is some of the reasons why many stroke survivors don’t commit.
      RegardsAvashna Moodley CEOwww.hospital2home.co.za

    • Anonymous
      Inactive

      Good morning Daniel I totally agree with you on this we just need to find way of engaging the survivors the first thing is to win their trust because there are some who are closed up for some reason best known to them. So we need to fight out as how to reach out to their needs and make them understand we are together in all of this.

    • Daniel Gu
      Participant
      Mabbola, I think a deeper issue is if we know what survivors want to talk about and how survivors want to talk about them. I guess we have not figured that out yet. People assume survivors want to learn more about recovery, resources and many other things. It turns out these are not necessarily true. And we still do not know how to let survivors trust the environment to open up. There is still a lot to learn. Someone concluded years ago that survivors will not open up. I happen to disagree. Every survivor and the family behind it is bravely fighting for a better tomorrow and their hope.

    • Anonymous
      Inactive

      That is very sad, but we should not stop doing good deeds we must keep on trying one day it will work out, the only amazing thing how human mind’s resistance to new ideas , it takes time to convince someone to accept new things no matter how good it might be.

    • Daniel Gu
      Participant
      Mabbola, you are very welcome. The biggest contribution you and any support group leaders can provide is to encourage survivors and families to use this system more. And tell us what we can do to drive usage (not we need to do this and that to the system, we need to build a system that does blah blah blah. We simply need to find a way to let survivors come out and ask more questions). 
      Right now our community remains mostly quiet. Over the last week, I got 1 survivor starting 1 topic. Does it mean survivors are all set, happy and without questions? I highly doubt it. But no one seems to have any questions to ask. What will motivate survivors come out and talk more is a challenge not only we face, but almost every stroke support organization out there.

    • Daniel Gu
      Participant
      Let me give you 2 examples. 
      1) We have a world’s top stroke blogger offer to train survivors to write better blogs. 600 survivors were invited. Many expressed interest before they would like to learn to write better. Among 600 survivors invited, 1 shows up occasionally to the class. Very discouraged, the blogger vowed not to do it again.
      2) A world class mindfulness coach who Harvard seeks to work with, has offered to the stroke community to provide free online sessions. We got only 1 person responding to the offer. No one seems interested. So we have not done anything yet due to lack of interest.
      Did we bring these resources close to survivors? Yes. I do not know how much closer you can get. Have we got any engagement? Close to none. Will these people offer to help again? I doubt it. 
      Question is how we could change that.

    • Anonymous
      Inactive

      Thank you so much, noted with regards.

    • Anonymous
      Inactive

      The idea is very good and it’s a can very useful and very resources to same but not all like here in Zambia because not every one is able to access internet here, most of people don’t use internet even when they would have loved to, because of poverty levels, only the minority has the capacity to access internet. So we still have a lot of work to do to be able to reach the level.

    • Daniel Gu
      Participant
      Mabbola, the system is already up and running. I am not sure the answer is we need to do this, do that and do all these things to the system.Quite the contrary, we need to first find what interests survivors first. 
      Today, not only survivors need help. Professionals, researchers and companies producing solutions for survivors need help too. They need to understand survivors better. They have resources. They are actively looking for ways to observe survivors. To encourage those stakeholders to put in more resources to help everyone, you need a very active survivor community. No matter what system you put out there, if the survivors are not using them, if survivors prefer to remain silent, then those with resources will notice that there is no interest among survivors, and they get nothing by staying involved, then they leave. 
      You can do everything you can to get it close to survivors. But unless survivors are using it, nothing will happen. 

    • Anonymous
      Inactive

      Good morning, thank youso much sr for your response and for being resourceful, you are very correct being financially sound is not the answer I agree with you. Indeed we need to create the system a platforms which will connect us closer to the stroke survivors. What we are trying to do as National Stroke Aid, we are working on a project which will be submitted to some local hospital to start with,  the project is an Acute stroke unit, which Will enable us to follow the the patient from the time they get to the hospital all the procedures they under go and what ever happens will be in our recods. That’s the project we are are trying to work on and the after they are discharged from hospital we want to set Up some rehabilitation central and also the home visitation arrangement of follow up programme of which iam doing already, I visit patients from their homes and am working on setting up a team of care givers who will be helping out with the stroke survivors. Any advice please.

    • Daniel Gu
      Participant
      A very good example is this forum. If we get survivors asking all kinds of questions, participants post answers then this will build into a valuable library full of useful information to new survivors. If survivors stay silent and not engaging, then this might never happen. When seeing that new technology does not lead to a more active survivor community, people will stop investing eventually. To understand what will get survivors interested so that everyone will open up and discuss their challenges is vital to any model to work. 

    • Daniel Gu
      Participant
      Mabbola, I hear you. We will do everything we can to assist. However, keep in mind, availability of resource does not by itself translate into better stroke care. A good example is what we are seeing in developed countries, where you have much more resources. However, as no support group could find a way to engage survivors in the scale and scope required, post discharge support remains very poor. To change that, we need to find how to engage survivors and understand what will motivate survivors to stay engaged.

    • Anonymous
      Inactive

      Firstly may I take this opportunity to thank the Lord For almighty for the privilege to be be given a chance to express my opinion on the challenges which most of the stroke survivors are faced with in Zambia.1.  The first thing I would like to put across is that challanges are many in our country as you may be aware that Zambia is still a developing country, and most of the people are very poor about 90% of the population are living in poverty. That is biggest challange, as a result it is not easy to our the patients to access quality healthy attention because most of the time patients in most of the parts of the country can’t reach the health facility in time when they need medical attention there is always a delaye in reaching the health care facility caused by lucky of the means to get to the hospital. 2. The health care facilities are very overwhelmed with too many patients which but with few health workers which could the patients not to be seen or attended to in time even when there they might have reached in time. There are no  are no stroke units in our hospital, as a result there are no proper follow ups of patients after discharge from the hospital, there is no financial support for to enable the survivors to help them attend physiotherapy sessions and most of stroke survivors stop attending the sessions before time.There is no networking with the stroke survivors. There is no platform of any kind.Even the awareness there is nothing done yet. Challanges are many I can’t state them all on this platform due to time.Now about me and the National Stroke Aid, iam Phanuel Mabbola the founder member of the National Stroke Aid, I have been helping out with stroke survivors rehabilitation since the year 2007 and I have seen their struggles and most of them are neglected even by their own family membersi guys because they lose hope on the way due to the nature of the ailment. And lack of understanding and the knowlesge on what could be done.The formation of National Stroke Aid is aimed at trying to closing up the gap to help out the missing link between the stroke survivors and the family and the community, the health care system and the patients relationship and reaching out to every one to join hands in fighting against stroke and it’s courses by promotion healthy lifestyle.We are also aiming at providing quality rehabilitation programmes to the survivors and lobby for their support from different stake holders.National stroke aid is less than two years in existence from the time it was registerd and it is registered minister of home affairs with the register of societies as a non profit making organisation and also integrated with ministry of health of the republic of Zambian. National Stroke Aid is a member of World Stroke Organisation. As a starting non profit organisation working on sacrifice and stand alone we have a lot of challanges our goverment has no capacity to support any  NGOs financially, and we are still struggling to set our base as it is a new concept we depend on welwisheres  support. Feel free to stage with us in this great work we need everyone’s support we need your support contact this number for donations support and and more information +260 977 554 332 whatsapp line kindly regards.Phanuel Mabbola National Stroke AidCoodnator, Zambia.

    • Daniel Gu
      Participant

      Hi thanks for the great initiative everything has it a beginning, I think this is still new to us in Zambia and am still thinking of how we can fully participate to reach out and create a conducive environment for everyone to take part. Kindly regards Phanuel Mabbola.

       

      Mabbola, what are the key challenges survivors in Zambia face? What do you see as the first step for you and your organization? Would you mind telling everyone about yourself and your organization?

    • Anonymous
      Inactive

      Hi thanks for the great initiative everything has it a beginning, I think this is still new to us in Zambia and am still thinking of how we can fully participate to reach out and create a conducive environment for everyone to take part. Kindly regardsPhanuel Mabbola.

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