ﺑﺎﺯﮔﺸﺖ ﺑﻪ ﺻﻔﺤﻪ ﻗﺒﻠﯽ
خرید پکیج
تعداد آیتم قابل مشاهده باقیمانده : -59 مورد

Patient perspective: Pediatric stroke

Patient perspective: Pediatric stroke
Authors:
Marina Ganetsky
Sasha Yampolsky, SCD, CCC-SLP
Section Editor:
Douglas R Nordli, Jr, MD
Deputy Editor:
Richard P Goddeau, Jr, DO, FAHA
Literature review current through: Apr 2025. | This topic last updated: Sep 05, 2024.

INTRODUCTION — 

This topic was written by an individual pediatric patient together with her mother after the patient experienced a hemorrhagic stroke due to a ruptured cerebral arteriovenous malformation (AVM). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view, which may enhance clinical practice and health care delivery. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

(See "Hemorrhagic stroke in children".)

(See "Brain arteriovenous malformations".)

(See "Neuropalliative care of stroke".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

(See "Patient education: Stroke (The Basics)".)

(See "Patient education: Arteriovenous malformations in the brain (The Basics)".)

(See "Patient education: Recovery after stroke (The Basics)".)

(See "Patient education: Stroke rehabilitation exercises (The Basics)".)

(See "Patient education: Stroke symptoms and diagnosis (Beyond the Basics)".)

(See "Patient education: Hemorrhagic stroke treatment (Beyond the Basics)".)

BACKGROUND — 

Our goals are to provide physicians and other medical practitioners as well as rehabilitation therapists (eg, physical therapists, occupational therapists, speech-language pathologists [SLPs]) with a patient's and parent's perspective on the experience of acute stroke and stroke recovery in a child. We hope to improve awareness of challenges and communication obstacles to help optimize care for others who face similar challenges.

The day the stroke happened — One day while at school, my 10-year-old daughter Marina nearly died. She was playing with her friends on the playground during recess when she developed a severe headache, vomited, and collapsed. She was rushed to the hospital, where she was found to have had an arteriovenous malformation (AVM) in her brain that ruptured. It was unknown to us until it ruptured that afternoon.

The bleeding increased pressure on the brain and was causing brain herniation. We were told she needed emergency surgery to reduce the pressure. The neurosurgeon informed us that had she arrived just 20 minutes later, she would have been brain dead. We were devastated but still hopeful.

Hospitalization — The day after her emergency surgery, Marina underwent a lengthy embolization and craniotomy to stanch the bleeding and further reduce pressure on her brain. She had magnetic resonance imaging (MRI) that night. We had a family meeting over Zoom with the neurosurgeons and a neurologist we hadn't met. They explained that if it had been "just" a brain bleed in the left occipital lobe, Marina would have been left with "only" alexia (an inability to read) and possibly a visual field cut (inability to see on one side). However, while the AVM had indeed been completely removed, it also caused multiple bilateral ischemic strokes, primarily affecting the thalamus and basal ganglia, likely from the increased pressure on the blood vessels. Marina also had a blood clot in one of the veins and would need a blood thinner to prevent it from spreading and causing more strokes.

We were told, "We don't know how she's going to interact with her environment, but one day she might move her left arm." And if things got worse, they would call the palliative care team. A chaplain paid us a visit.

We lived with this devastation for over a week. Marina was placed in an artificial coma to control the swelling in her brain. She needed multiple sedatives at high doses to keep her pressure close to normal. Success was judged by numbers on a monitor connected to a tube coming from her brain.

She subsequently developed a fever, and that prompted another brain MRI. Another neurologist, the chief of the pediatric stroke service, reviewed the imaging and decided that it showed a more hopeful picture. Marina had indeed suffered ischemic strokes, but they were not as extensive as initially believed. We desperately clung to his prognosis: "I am cautiously optimistic. She will likely never be able to move her right arm or track her eyes to the right side, but she could have a good quality of life. She may have trouble with calculus, but we won't know that until she gets to it." Trouble with calculus? We would be overjoyed if she just regained the ability to swallow and speak again, let alone tackle calculus! We later met with our neurosurgeon who offered, "The dust has settled, and things look better than before." These hopeful outlooks were a lifeline for us.

She eventually spent a total of six weeks in the intensive care unit. She needed a tracheostomy and gastrostomy tube to safely wean the sedatives and for nutrition. By the end of that time, she was breathing on her own. The tracheostomy tube was eventually downsized and actually ended up falling out. She was moved from the room by the nurses' station to a corner room. Everyone was astounded that she was still alive. Marina was described as being "minimally conscious." She couldn't sit up unsupported, hold her head up, swallow her secretions, or make any sounds. As another neurologist bluntly said, "You cannot dodge a bullet without getting hurt." We prepared to move to a pediatric rehabilitation hospital, where she would spend the next three months. The neurologists told us she would make progress for a year or so, and that would be it.

INPATIENT REHABILITATION

Initial progress — When Marina arrived at the inpatient rehabilitation hospital, the physiatrist on service met us and examined her. We knew she was "in there" and could understand us, but he wasn't convinced because she could barely move on her own, using only her left arm. Over the next month, her motor function started to slowly recover. She began following commands with her arms and eyes, and she was deemed to not be "minimally conscious" anymore!

Marina – I don't remember anything from being in the hospital. Memories from the beginning of my time in the rehab hospital are really hazy, but some moments stand out. I was unable to talk, walk, swallow, or even use the toilet. I recall walking the hospital corridors with my dad, his steady presence a comforting anchor amidst the uncertainty. I was fed by the gastrostomy tube because I couldn't control my tongue or mouth. My parents snuck in Pirate's Booty corn puffs and applesauce so I could practice chewing and try to swallow, but they would have to scoop it out of my mouth. My parents later told me that they faced a stern reprimand from the speech therapist for this unauthorized practice. That didn't stop them. I cherished those small tastes and the simple act of chewing.

Trying to be heard — During our meetings with the rehabilitation team, we clearly articulated our primary objectives: working on Marina's swallowing and vocalization. We were confident discussing these goals, emphasizing our desire to prioritize them during her rehabilitation stay. But the speech-language pathologist (SLP) often diverged from our goals. Despite Marina's ability to communicate effectively through nonverbal means, the SLP persisted in emphasizing augmentative and alternative communication (AAC) methods rather than focusing on speech production. We wondered if the SLP's focus on AAC might have been driven by insurance requirements or a need to check off a criterion (eg, being sent home with a means of communicating basic needs).

We wish they had asked simple yet profound inquiries like, "What does Marina want to focus on?" or "What is important for your family?" These may have opened doors to more personalized and meaningful treatment. Sounds simple, right? It is!

Marina – I could not talk or even make a single sound! I communicated with a thumbs up or down and pointing. However, the SLP deemed these methods insufficient. After two months without progress in vocalization, and even though everyone seemed to understand me, she introduced an AAC device – a dreaded iPad loaded with pictures representing emotions like sadness, happiness, anger, pain, and cold. I resisted vehemently, yearning to speak rather than point at images. Plus, my facial expressions also spoke volumes, conveying my feelings to the attentive staff and my parents, who seemed to read my mind. In the final weeks of rehabilitation, the SLP persisted in teaching me the device's usage, hours that could have been spent focusing on vocalization and swallowing.

My mom fought battles of her own during those challenging weeks. She advocated for incorporating an electrical current-based therapy that stimulates swallowing using specific exercises, and also focusing on volitional vocalization, despite resistance from the rehabilitation team.

As discharge approached, we received a sobering prognosis from the SLP: "Don't put all your eggs in the speaking and eating basket." Meaning: Don't expect me to eat or talk any time soon.

The discharge summary labeled me with "global aphasia." Global aphasia is the most severe language disorder that happens when someone has significant brain damage, usually from a stroke. People with global aphasia can't speak, understand what others say, read, or write.

But I could understand everything, and I could follow commands! My mom tested me with questions like: "Is it raining outside? Do you like my new shoes? What's 2+5? Which one is Elsa or Anna?" – all of which I answered correctly. My good comprehension and responsiveness were directly in contrast to the "global aphasia" diagnosis I was given.

We were also told to place Marina in a school setting without delay, even if it was 1:1, isolated from her peers. This would mean a "hospital school." We insisted on intensive home rehabilitation and stimulating social interaction, believing isolation would hinder rather than aid recovery.

People who gave us hope — During Marina's recovery while in inpatient rehab, we met several people who were encouraging and supportive. We were frequently visited by a child psychiatrist. He genuinely engaged with Marina, observed her comprehension of language, and reassured us: "Of course she will talk; look at how she comprehends language." His optimism was contagious and deeply encouraging.

He also introduced us over Zoom to a family whose teenage son had suffered a similar injury two years prior. Seeing this young man talk, laugh, and sing was the best therapy we, as parents, could have received. This experience filled us with immense hope. The family shared that their son had also been given a communication device in rehabilitation, which he refused to use, throwing it across the room in frustration. They were given a wheelchair upon discharge, which they left in the garage and instead focused on walking. We did the same with our wheelchair, and when the "permanent" one was eventually delivered to our house, we sent it back along with the temporary wheelchair.

The chief of pediatric physiatry, who is a no-nonsense, straight-talking physician, was also hopeful. She never said, "Marina might never" Instead, she expressed a firm belief in Marina's ability to recover basic functions necessary for a good quality of life. She reinforced our hopes in the capacity for neuroplasticity in children: that their developing brains can adapt and rewire. She had seen many children recover after stroke. Her many years of caring for children after strokes and her unwavering confidence were reassuring. During Marina's three months in rehabilitation, we bombarded her with questions about Marina's future, asking if she would ever talk, eat by mouth, or stand on her own. Her answers were always filled with optimism and belief in Marina's potential. She continues to be Marina's doctor and cheerleader.

Marina's primary nurse also played a crucial role in maintaining our hope. She understood the fine line between false hope and genuine encouragement. Recognizing Marina's intelligence and sense of humor, she often laughed with her and engaged in subtle wordplay, which Marina appreciated even though she could not talk! Additionally, she shared videos of a past patient (with his mother's permission) who had a severe traumatic brain injury and subsequently made great strides in his recovery, eventually being able to order food from McDonald's. These stories and examples were absolutely invaluable, showing us that recovery was possible and giving us the motivation to keep pushing forward.

The physical therapist was tough but aspirational. Marina responded very well to the physical therapy sessions focused on walking and core strength exercises. She made good progress. We did lots of standing activities at the nurses' station, so it felt less like work.

All these efforts exemplified patient- and family-centered care. These clinicians may not have directly worked on Marina's specific goals, but their support, belief, and shared hope were crucial. Without hope, there would be no reason to strive for improvement. Without hope, what's the point? Hope was, and remains, an essential part of Marina's recovery. These wonderful clinicians never took hope away, and for that, we are forever grateful.

Uncertainties as we prepared to go home — At discharge from inpatient rehabilitation, we faced questions about this next step and the challenges we would face. I wish our clinicians had provided us with comprehensive strategies and specific guidance on things like how to work on breath control, phonation, and swallowing. Practical exercises and specific techniques tailored to our child's needs would have been incredibly beneficial in facilitating her recovery. Additionally, reassurance that voice and swallowing would improve over time would have offered us much-needed hope.

Connections to other families experiencing similar challenges would have provided invaluable support and understanding. Sharing experiences, advice, and encouragement with families who had navigated this difficult journey has made us feel less isolated and more empowered to support our child's recovery.

REHABILITATION AT HOME

Turning home into a rehab — Marina came home four and a half months after her brain arteriovenous malformation (AVM) rupture. We were overwhelmed, anxious, and unsure. However, we had communicated with several families whose children had strokes, and one thing was clear: The rehabilitation model for adult strokes does not apply to children. Intensive rehabilitation does not end after inpatient rehabilitation; several hours per week of therapy is not sufficient for a brain that is still developing. Additionally, stroke recovery does not end after one or two years.

We turned our home into an intensive rehabilitation program, Marina's bedroom into a hospital room, and our kitchen into a pharmacy. She needed gastrostomy tube feeds but would vomit them because the volume was too large. She couldn't swallow her secretions and drooled, so we had suction pumps and washcloths in every room.

During the 18 months that Marina was home from school, her schedule was consumed by occupational therapy, physical therapy, speech therapy, and swallowing therapies, with respite only found in sleep. Our friends created a GoFundMe page. The funds were used to pay for private neurorehabilitation therapists to come to our home. They did not take insurance, but we could not spend precious time and energy traveling from one clinic to another. We created a shared Google calendar so the therapists could just schedule themselves.

Marina – I don't remember many of the details, but I do remember that it felt like there was a revolving door of therapists. I remember meeting many speech pathologists and several teachers who came to our house. Some of them I only saw once or twice, and then they disappeared. It was frustrating because just as I was getting used to them, they were gone. It made everything feel more confusing and harder than it already was.

One speech therapist told me she would be coming to our house every single day for the whole year, and that she would help me get better. That sounded like a long time, but I was hopeful. Maybe she could be the one to help me talk again. I wanted to believe that things would get better if she stuck around.

Ironically, I (Marina's mom) am a speech-language pathologist (SLP) with prior experience treating stroke survivors. Thus, in addition to the carefully selected outpatient and private neuro-SLPs, Marina benefited from the constant presence of her own "live-in" speech-language therapist.

Doubts and uncertainties — With every therapist that left, I lost hope and questioned my own professional judgment as well as my belief in the power of neuroplasticity. Maybe I was engaging in too much magical thinking, not facing reality, and not accepting our "new normal"? Despite my nearly three decades in the field, were all these clinicians right and was I wrong?

Discharge summary is not destiny — We learned the tough lesson that the hospital and rehabilitation discharge summaries and MRI reports always follow you, like a bad penny. The rehabilitation discharge summary sounded like Marina was barely out of a vegetative state and that she had severe global aphasia (even though Marina was able to understand everything that was said to her). The MRI reports described a devastating injury, one that her neurosurgeon eventually said an adult would not be expected to ever wake up from.

Some of the clinicians we hired or consulted just pointed to the discharge summary to "warn" us against pursuing goals such as speaking. During those first six months at home, several clinicians refused to even meet Marina. We were told to "sit with our grief." I felt they should have met Marina, observed her in person, and listened to us rather than relying on discharge summaries and imaging. They could have provided a genuine, objective assessment and suggestions for treatment. It made me so angry that some seemed to have forgotten the patient-centered core of clinical practice and the role of neuroplasticity in children.

Marina – One speech therapist made me these little booklets with pictures inside. The idea was that I would point to the pictures to tell people what I wanted or how I was feeling. She also told my parents that they needed to make communication boards for me to use at home. She said that these boards would help me communicate better. But she didn't seem to understand that my parents already knew what I wanted. I didn't need to point to pictures for them to get it – they just knew. And so did the caregiver they hired to help us during the day. Her name is Mary (I call her Mary Poppins), and she is awesome. She understood everything I was trying to communicate, and we laughed and joked all the time. She doesn't have a degree and she's not a clinician, but she really got me. Now, more than three years later, she is no longer my caregiver (since I'm at school), but she's a part of our family. She comes over for dinner, and now that I can talk all day long, we laugh about all the ladies who made me point to pictures!

I remember one day an SLP was sitting on our couch, talking with my parents about the communication boards again. She kept saying how important it was for us to use them, that it was necessary for my progress. My parents kept asking why we needed the boards when they could understand me just fine without them. I could see that they were frustrated too, and even a little worried that perhaps I should be pointing to pictures like all these therapists recommended. So, my parents made some kind of communication board for me, like this SLP suggested, with pictures of things I did during the day (shower, watch TV, get ready for bed, etc). She told them to put mealtime on there too, although she knew I couldn't swallow and that I had the gastrostomy tube. She told my parents to just put a picture of me hooked up to the feeding machine, and to call that mealtime. So, what did I do with that communication board? I kept pointing to the TV. What else would a 10-year-old do?!

After several sessions, this SLP stopped coming. I didn't really understand why at the time, but now I know she quit because my parents stopped using the communication board.

Not all clinicians were close-minded. During a follow-up visit, an astute neurologist stopped us as we were trying to relate the MRI findings to function; she counseled us that it's truly unknown which parts of a child's brain take over after a stroke and that the most important factor in prognosis is function, not imaging. For a child with a stroke, progress predicts progress, not discharge summaries or imaging. Similarly, one therapist reviewed the paperwork and then came to our home for a two-hour evaluation of Marina. Afterward, she said to me, "Oh my God, I expected one person based on the report, but seeing Marina in person is a completely different story. She's nothing like what was described." Her confession revealed a recurring theme: focus on the person, not their reports or images.

Celebrating progress — In the rehabilitation hospital, we had been told that Marina's swallowing functioning, if it recovered, would take a very long time, at least a year. Every day at home, we put apple sauce and Pirate's Booty corn puffs into Marina's mouth, then scooped or suctioned it out. We took her for electrical current-based swallowing and feeding therapies. And just three weeks after we brought her home, she swallowed her first spoonful of apple sauce. You could see the excitement on her face! By two months after coming home, Marina was eating macaroni and cheese, her favorite dish. Within one year after the AVM rupture (and after several swallowing studies and much hard work), her swallowing function had recovered so much that the gastrostomy tube was able to be removed.

Six months after Marina came home, we heard her voice, which was initially just a two-second squeak. This did not happen spontaneously but took hundreds of hours of work on breath support, lip movement, voice therapy, and even karaoke. Two months later, she uttered her first word, a typical "no" of any tween. Six months later, she formed her first sentence, another typical tween phrase, "Go to hell." Two years after her AVM rupture, her speech became intelligible enough even for unfamiliar listeners to understand her (movie 1A-B).

Celebrating these victories has been heartwarming and uplifting. Each step forward (literally and figuratively), no matter how small, was – and still is – a cause for celebration. From the first time she swallowed a spoonful of applesauce to the first time she could sustain phonation for more than five seconds, we have marked each milestone with tears of joy and gratitude.

Life participation approach to aphasia — Within the field of speech-language pathology – and other professional therapeutic and medical domains – there is an evidence-based patient-centered approach to treatment, called the life participation approach to aphasia (LPAA). There are entire books, websites, videos, tutorials, etc, that can provide a more in-depth explanation than is possible here. A clear and concise explanation comes from Debbie Yones, executive director at Voices of Hope for Aphasia who described it as "a client-centered approach, viewing the person with aphasia and their families as the experts in the treatment process…that spans all stages of aphasia recovery – meaning that an individual with aphasia can participate in meaningful activities for the rest of their lives" [1].

LPAA holds significant importance in the realm of treating not only aphasia but also other neurologic issues. LPAA acknowledges that communication challenges affect not only language but also social, emotional, and cognitive aspects. By considering the broader context of an individual's life, it ensures a more comprehensive and effective treatment plan. It emphasizes tailored therapy, ensuring that treatment aligns with individual aspirations, leading to more meaningful progress and satisfaction.

LPAA's principles extend beyond aphasia and cater to a spectrum of neurologic issues. Its emphasis on personalized, life-centered therapy can benefit individuals dealing with traumatic brain injuries, dementia, and other conditions affecting communication and cognition.

I believe that a person-centered approach is absolutely critical for school-aged children recovering from acquired brain injuries. The intricate daily navigation through academics, social engagements, extracurricular activities, and friendships demands a meticulously personalized approach. We feel incredibly blessed that we finally found practitioners whose approach aligned with this ideology.

And it works! We've seen it work. A year after we brought Marina home from rehabilitation, the beautiful, fragile sound of her voice slowly began to emerge. Each word she spoke, though barely intelligible at first, carried the weight of a thousand unspoken thoughts, and her clarity improved week by week.

Six months later, we sat in the chief of pediatric physiatry's office, the same one who gave us hope back at the rehabilitation hospital. As Marina spoke, we watched her break down in tears, overwhelmed by the undeniable clarity in her voice. It was the first time since the inpatient rehabilitation that she heard Marina speak. It was a moment that would forever be etched in our hearts.

Finding the right clinicians — One day, Marina and I sat down and made a list of the qualities that we felt were important for a neurorehabilitation professional to have. We read through our list and I was surprised what it did not include: years of expertise, the "impressiveness factor" of their credentials, or the reputation of their academic settings. And indeed, none of these were important for Marina.

Here is the list that Marina and I came up with:

Be a nice person.

Listen to us (truly listen).

Partner with us.

Be patient with us and with Marina. You don't need to be perfect, just patient.

Adopt Marina's goals as the goals to address in treatment.

Speak in terms of "collaboration" rather than "compliance."

Have a desire to learn and develop professionally. Does not have an issue with saying, "I don't know, but I will try to find out."

We eventually did find therapists who understood what we needed and who truly believed in neuroplasticity. They didn't recommend unnecessary and unhelpful assistive devices. Instead, they asked Marina, "What are your goals?"

Marina – I only had a couple of goals. I wanted to talk again, read my favorite books, and go to school to be with my friends. I really wanted to have some of my life back.

My mom finally found what she calls the "A team": an occupational therapist and three SLPs (one for speech, language, and memory; one to work on my voice; and one who taught me to read again). These therapists really listened to me. I could not talk yet, but they understood exactly what was important to me! They didn't politely "yes" me and move on; they said, "Okay, let's focus on getting you there." I felt like they really understood how important these things were to me.

They started coming up with different ways to help me reach my goals. They had all these games and strategies, they talked to each other all the time, and they weren't afraid to try new things if something wasn't working. Every day, we worked together, and even though it was hard, I felt like we were making progress, bit by bit. But it wasn't just about doing exercises or practicing; it was about finding the best way for me to talk again, to read, and to get back to the life I wanted. They genuinely believed in me, and that made me believe in myself.

Advocacy — Just under two years after her brain injury, Marina and I began to give presentations, sharing our journey with national aphasia organizations and speech-language pathology graduate students. Marina began to tell her story – the struggles, the triumphs, and the unwavering spirit of a young girl who refused to be defined by the initial prognosis, discharge summaries, imaging, or misperceptions of what's possible after a child has a stroke. Together, we found purpose by reaching out to others who were walking the same difficult path.

Another six months passed and Marina celebrated the release of her children's book, a heartfelt project born out of our experiences. We wanted to give kids and parents dealing with brain injuries a story of hope, a reminder that even in the darkest of times there is light and love.

And then, six months later, Marina and I, along with two of our amazing patient-centered clinicians, found ourselves standing in front of an audience of 600 people, delivering a keynote address at the annual conference of the Brain Injury Association of Massachusetts, which is the largest brain injury conference in the state, for physicians, neuro-rehab clinicians, and survivors and their families. This is something neither of us could have fathomed just a year prior.

Marina — During the question-and-answer session, an audience member asked me what I wanted people to know about me. Without missing a beat, I said "Even after a stroke, I'm still sassy and a badass."

In that moment, I realized that Marina's journey was not just about recovery – it was about reclaiming her identity, her strength, and her spirit. Before the question-and-answer session began, her SLP, who was sitting next to her on the stage, told her that it would be absolutely okay for her to come off the stage, since we had no idea what kind of questions the audience may ask. Marina told her a resounding "no"; she would stay on that stage and field any questions that came her way. I couldn't have been prouder.

WHAT ADVICE WOULD YOU GIVE TO OTHERS?

A glimmer means hope — No one knows everything about your neurologic condition or potential for recovery. A former speech therapy professor once said, "If you observe it, even for one second, she can do it. If you observe something for one split second, that means it is in there!"

He meant that a brain is rewiring itself through neuroplasticity, but this progress often reveals itself in tiny, iterative steps. We must keep our eyes and ears open to recognize these small victories, identify the trends, and see the proof of progress.

Remember the power of neuroplasticity — The adult stroke rehabilitation model is insufficient for children. Children with strokes don't stop making progress after a year or two. We have met many families and they all said that their child's long-term recovery wildly exceeded all early prognoses. They continued to make progress after 5, 10, or 15 years. Intermittent, low-intensity therapy may not harness the full power of neuroplasticity in children. Maybe adults could have similar long-term outcomes with the same opportunities [2].

Embrace patient-centered, goal-oriented care — Seek out professionals who place you at the center of your therapy. Trust your instincts. If you find yourself having to convince your clinician of your potential or capabilities, it's time to find another. Remember, you are the expert on your goals, not them. Look for therapists who not only embrace patient-centered care and the life participation approach to aphasia (LPAA), but also use backward design. Simply put, they should ask you what you want to achieve, then work backward to create a plan to reach that goal. Find clinicians who will be your partners, not your authority figures, who are curious and flexible rather than convinced they have all the answers, and who create a safe space of trust where you feel comfortable sharing your vulnerabilities.

Clinicians, please listen to your patients and their families. Truly listen and strive to understand their goals. Prioritize their autonomy and expertise, placing them at the helm of their rehabilitation journey. In doing so, you will help them regain confidence and help to rebuild their sense of identity and purpose.

After all, isn't that what recovery is all about?

HELPFUL RESOURCES

National Aphasia Association

Aphasia Recovery Connection

Niekro Aneurysm & AVM Foundation

Institute for Patient- and Family-Centered Care

Voices of Hope for Aphasia

Aphasia Access

  1. Yones D. Education series: The life participation approach to aphasia (LPAA). Voices of Hope for Aphasia 2021. Available at: https://www.vohaphasia.org/education-series-the-life-participation-approach-to-aphasia-lpaa.
  2. Ballester BR, Maier M, Duff A, et al. A critical time window for recovery extends beyond one-year post-stroke. J Neurophysiol 2019; 122:350.
Topic 145758 Version 1.0