Tips for Being a Stroke Survivor’s Advocate

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During my time as a critical care nurse, I have noticed things that stroke patients and their families can do to ease the stress of the hospital stay. The following is a non-exhaustive list of ways that patients and their families can advocate for the stroke survivor to ensure that the best care possible is received.

Educate

Learn as much as possible about strokes: the causes, treatments, and side effects of prescribed medications. Education may lead to more questions, which is a good thing.  These questions can and should be answered by the care team.  It can be helpful to write these questions down to avoid forgetting them during appointments.  Education helps patients and their loved ones make more informed decisions. One of the most common questions I am asked by the family while a stroke survivor is in the hospital is “when will they get better?” The healthcare provider will explain the best-case scenario, the worst-case scenario, and the most likely scenario. This three-pronged answer will provide a framework that can help ease anxieties and guide the decision-making process since each stroke is different and there is no one-size-fits-all outcome.

Communicate

Communication is a skill that helps in almost every stressful situation.  It is important to communicate honestly and effectively with the care team.  A stroke will be a traumatic event for the survivor and their loved ones.  It’s important to take as much time as necessary to be able to ask questions and, perhaps more importantly, receive answers in an effective manner.  I often tell the family of patients that the hospital is a 24-hour facility.  It is absolutely okay to call in the middle of the night for an update, especially if that helps alleviate any stress that the patient’s loved ones may be experiencing.  Some gaps in communication are usual, depending on the length of the stroke survivor’s hospital stay, when follow-up diagnostic studies are conducted, and during post-discharge plans.  I encourage families to voice any concerns that may come up; a small change in mental or physical ability can mean a lot.  It’s always better to err on the side of asking too many questions rather than too few.

Share Respect

Respect for the family and for the healthcare team is not requisite for exceptional care, but a little bit of mutual consideration can go a long way.  As the saying goes, respect is a two-way street.  I get great satisfaction out of being a source of support for people during this difficult time.

Respecting hospital rules and regulations, such as visiting hours and limits on the number of visitors or appointing just one family representative to receive and disseminate updates, can be a huge help so that the medical team can provide the safest and most effective care possible, which is everyone’s goal.

Keeping mutual respect in mind makes it easier for nurses and other hospital staff to hold space for patients and their families.  When I see my coworkers getting frustrated, I remind them to maintain their compassion for our patients and their families.

Seek Support

Seeking support during stressful situations doesn’t come naturally to everyone.  Some folks find it very difficult to reach out, perhaps to avoid feelings of shame or guilt.  These are natural and normal feelings, but when health is on the line,

sometimes we must get over our pride.   Finding support from a stroke support group can help patients and their loved ones learn problem-solving and ways of coping with feelings brought on by stroke’s life-changing effects.

Follow Up and Follow Through

The initial hospital encounter for a stroke patient and their family can feel like a whirlwind. Hopefully by discharge, things have settled down and have become more digestible.  There will likely be follow-up medications, therapies, and appointments of which to keep track. It is imperative for the health of the stroke patient that the discharge instructions be followed and that any new symptoms or deficits be mentioned to the team.  Following through on the care plans can make all the difference during the recovery process.

So, while my suggestions do not constitute a complete list, and certainly not a checklist of things that must happen for the stroke patient to have the best outcome, my hope is that I’ve provided some guidance for an incredibly difficult situation.

 


By Laura Tsim, RN BSN CCRN

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