Life after stroke
lessons from personal stories of survival,
managing change and overcoming adversity
managing change and overcoming adversity
Note: this website is best viewed on a computer or tablet.
The aim of our research project was to co-create digital stories with stroke survivors about how their interactions with healthcare professionals impacted their experience following stroke. The main purpose of this website is to share these important lessons, and the stroke survivor digital stories, with healthcare professionals. However, all are welcome to watch and learn from these insightful stories.
This website will allow you to learn more about the important lessons we have learned, to view the individual stories that were created, and to also learn more about the research project. The buttons below will help you navigate to the relevant sections. Audio clips are provided throughout if you would prefer to listen to the content of the website.
More detail on these lessons, and relevant clips from the stroke survivors' digital stories, can be found in the tabs below. Please click on the tabs below to access the relevant information for each lesson.
ISSUE: From the stories we have collected, stroke survivors reported encountering assumptions about the symptoms of stroke. In many cases this led to individuals being misdiagnosed and not receiving urgent medical assistance. A theme that was consistent in the experiences of stroke survivors was their belief that the 'Act F.A.S.T.' campaign, and the campaign's focus on symptoms related to a person's Face, Arms and Speech, may have played a role in healthcare professionals not acknowledging additional important symptoms. Additional symptoms that stroke survivors believed are important to acknowledge were a person's: balance, eyesight or confusion. However, there was also acknowledgement that stroke can have a variety of potential symptoms and healthcare professionals must be aware of this. It is also important to acknowledge that this issue is often interwoven with assumptions that can be made due to a stroke survivor's age or lifestyle (see Lesson 2 and Lesson 3 for more information).
What can we do to help?: It is important for healthcare professionals to listen to and acknowledge the symptoms a potential stroke survivor is experiencing. Assumptions should not be made about the symptoms an individual is experiencing, and all potential symptoms that may indicate a stroke should be taken seriously. This is particularly important when first responders are interacting with people who may have had a potential stroke.
ISSUE: Stroke survivors can encounter stigma associated with the assumption that stroke is a disease of the elderly. This can impact a survivor throughout their stroke journey. In the stories collected, survivors expressed their belief that they were misdiagnosed by healthcare professionals as a result of their age. This can result in a significant delay to stroke survivors receiving important treatment that can save their lives and limit the severity of acquired disability. Furthermore, stroke survivors can experience care that is built for a population that is expected to be elderly; however, this has the potential to ostracise younger patients and make it harder for them to come to terms with having a stroke.
What can we do to help?: As the average age of stroke survivors in the UK continues to decrease, stroke should no longer be treated as a phenomenon associated with the elderly; it should be regarded as a health issue that can impact anyone of any age. It is important that potential stroke survivors are not dismissed as a result of their age and that, once in a healthcare setting, they are reassured and informed about the reality of stroke's prevalence throughout a variety of age demographics. This links strongly with Lesson 1 and first responders should not make assumptions about a person's symptoms due to their age; this could lead to misdiagnosis and a delay in receiving vital treatment.
ISSUE: Stroke survivors in their stories often took time to express that they lived a healthy lifestlye prior to stroke. The stroke survivors in this project explained that this was because they wanted to distance themselves from the assumption that stroke will have been caused due to their lifestyle and engaging in behaviour that could have contributed to having a stroke. While lifestyle choices, such as: smoking, drinking, poor diet and lack of exercise, increase the likelihood of stroke and account for a significant percentage of strokes each year, there are many potential causes of stroke that should be acknowledged and considered.
What can we do to help?: There are many different potential causes of stroke. If assumptions are made about an individual's lifestyle, and how it may have caused their stroke, it is possible for individuals to believe that the stroke was their fault, even when they have not engaged in behaviours that are a risk factor for stroke. If the cause of a stroke can not be immediately identified, it is important to manage conversations about a person's lifestyle and habits. Where possible, healthcare professionals should avoid situations where the individual is made to feel responsible for their stroke.
ISSUE: Stroke survivors expressed the benefits of interacting with healthcare professionals who listened to their input and took on board their opinion. The importance of this is seen throughout a stroke survivor's journey, whether it is during the initial onset of stroke and experiencing of symptoms, or whether it is during their stay in hospital. Stroke survivors can find it frustrating when their input is not taken seriously and important information about their experience is not being listened to; in serious cases this can lead to misdiagnosis and stroke not being identified as soon as possible. When survivors do feel heard, and have a positive, supportive relationship with healthcare professionals, it can have a profound effect on a survivor's recovery and their post-stroke outlook. Every stroke survivor will have a unique set of concerns about how stroke may impact their lives and understanding this is important to help inform and encourage stroke survivors in their recovery.
What can we do to help?: It is important that healthcare professionals acknowledge the individual behind the stroke; each stroke survivor will have a unique set of concerns and needs depending on their subjective lives. Time should be taken to discuss these issues with stroke survivors and their families. Moreover, stroke survivors and their families should be included in discussions and decisions that relate to a survivor's treatment. The input, opinions and experiences of stroke survivors and their families need to be acknowledged and listened to by healthcare professionals. By doing this, stroke survivors will feel more informed about their condition and more in control of their care/treatment. Acknowledging the individudal, and what their pre-stroke life was like, can help healthcare professionals understand how stroke may impact an individual and potentially prepare them more adequately for discharge. This issue is discussed in more detail in Lesson 5.
ISSUE: Stroke survivors often feel unprepared for the reality of leaving hospital and adjusting to the impact stroke has had on their life. Stroke survivors expressed that there can often be a lack of discussion about what to expect when returning to life following stroke. Stroke survivors can experience denial, as they can expect their life to return to their sense of pre-stroke normality. However, due to the impact of stroke, many struggle to return to pre-stroke roles, responibilities or hobbies. This often drastic change to a stroke survivor's sense of normality can also be compounded as a survivor can face difficulties when interacting with the outside world due to their acquired disabilities.
An important aspect of preparing stroke survivors for discharge are discussions with healthcare professionals about managing recovery expectations. Stroke survivors have expressed it is important to ensure that healthcare professionals both provide a realistic explanation of how stroke will impact an individual's life, while also making sure not to remove a survivor's hope for further recovery in the future.
What can we do to help?: Conversations need to be had with stroke survivors prior to their discharge from a primary healthcare setting, so that their expectations can be managed about what to expect when attempting to adjust to life after stroke. It is important for healthcare professionals to strike a balance between being realistic about the potential extent of the impact a stroke survivor's acquired disabilities may have on their life; while also not removing hope for the potential of continued long-term improvement. These conversations should take into account the personal lives of stroke survivors and what the subjective impact of stroke will be on their individual lives. There needs to be acknowledgement of the long-term nature of stroke recovery and adaption to life after stroke. However, survivors may not be prepared to fully acknowledge this during their acute recovery, so it is important that survivors are directed towards possible routes of long-term support, this issue is further expanded upon in Lesson 6.
ISSUE: Adapting to life after stroke is a long-term process; most stroke survivors have to contend with long-term disability and the impact this may have on their lives. Often it is only after survivors leave a primary healthcare setting that they begin to understand the extent to which their life has been impacted following stroke. Many survivors face a variety of long-term challenges, often of a psychological and social nature. These challenges can endure indefinitely making it difficult for survivors to come to terms with how their life has changed. Long-term support from community based teams and organisations can play a key role in helping survivors adjust to the unique challenges they face and can encourage a more positive adjustment to life after stroke.
What can we do to help?: It is important for healthcare professionals to understand the subjective circumstances a stroke survivor may face following discharge. With this knowledge, stroke survivors can be directed towards relevant avenues of post-stroke support that can best help them adapt to their subjective circumstance post-stroke. Healthcare professionals can help support this transition by increasing their communication and co-operation with community-based stroke support teams and organisations. This can help healthcare professionals to effectively direct stroke survivors towards beneficial post-stroke support that can help survivors manage the initial transition following discharge, as well as support for their long-term adjustment to life following stroke, that is relevant to their individual set of circumstances.
Ben, a retired Sergeant Major, enjoyed a healthy and active life while running a company with his wife. Aged 57, Ben had a haemorrhagic stroke which initially left him unable to speak, walk, or eat and swallow. 3 years post-stroke, Ben still faces challenges but he retains his sense of humour, stays driven, and continues to improve.
Watch on vimeoKelvin experienced excruciating and debilitating pain for over a year, which was initially treated as a migraine. After his condition deteriorated, Kelvin was diagnosed with a brain aneurysm and stroke. As a result of stroke, Kelvin continues to navigate a variety of challenging, long-term hidden disabilities.
Aged 29, Sarah suffered a catastrophic brain stem stroke. After initially being completely paralysed, the left side of her body began to wake up. Sarah had to learn to function again with the right side of her body paralysed. After 8 months in an intensive rehabilitation ward, Sarah was deemed well enough to return home where navigating post-stroke life began.
Watch on vimeoAt the age of 26, Donna suffered a stroke whilst on maternity leave from her videography business. As a result of her stroke, she had to relearn to walk, talk and even how to eat, alongside her newborn baby.
After experiencing facial numbness, and noticing his balance, dexterity and peripheral vision had been affected, Paul visited his GP. Paul had to wait a matter of days before he could attend a TIA clinic, where he was assessed and then admitted to a stroke ward. Stroke challenged Paul's sense of independence and resilience, and effected his search for work.
Watch on vimeo
You can learn more about the collective lessons we have learned from the experiences stroke survivors have shared in their stories. We believe these lessons can help inform healthcare professionals of how their attitudes and behaviour can impact survivors of stroke.
We interviewed 30 stroke survivors from across the UK to find out what can help and hinder survivors as they begin to rebuild their lives and reconstruct their identities following stroke.
Stroke survivors from the first stage of the project helped to co-create digital stories. The purpose of these stories are to share important lessons learned with healthcare professionals to inform them of how their attitudes and behaviour can impact survivors of stroke.
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After co-creating these digital stories, we are now sharing them to spread the important lessons we have learned.
This website will allow you to access the digital stories and their important collective findings.
The aim of the first stage of this study was to synthesise stroke survivors' experiences to further understand the process of reconfiguring post-stroke identity and how individual and social factors help, or hinder, this process.
The complex physical, cognitive and psychological consequences of stroke can disrupt a survivor's sense of pre-stroke normality and identity. This can have a substantial impact on their individual and social lives. Individual reports about life after stroke have improved our understanding of this impact. However, stroke support systems, struggling with increased demands due to an increasing stroke population and the consequences of COVID-19, require deeper insights based on synthesised narratives into what can enable stroke survivors to rebuild their lives and identities positively.
During Stage One of the project, 30 interviews were conducted (lasting 60-90 minutes) with stroke survivors from across the UK. These interviews were held at least 12 months post-stroke, as this is a time where most survivors have left a primary healthcare setting and will be adjusting to the long-term consequences of stroke on their lives.
10 face-to-face interviews were conducted prior to the COVID-19 pandemic. After the start of the pandemic, the other 20 interviews were conducted remotely, either over the phone or via a videocall platform (such as Skype). Of the 30 participants we spoke to, there were 14 women and 16 men. The participants ages ranged between 31-86 years old. The time since stroke ranged from 1-25 years post-stroke at the time of the interview.
Stage One of the project helped to further explain the process stroke survivors experience as they attempt to rebuild their lives and reconfigure their identity following stroke. While there were many important and varied findings from this study, the important role healthcare professionals play in supporting stroke survivors during their post-stroke journey was further evidenced. As a result, the second stage of this project aimed to share some important lessons that were learned during Stage One of the project with healthcare professionals.
The aim of this stage of the study was to co-create digital stories with stroke survivors from Stage One of the project, to help increase empathy and encourage behaviour change amongst healthcare professionals working with people after stroke.
We have learned many important new lessons about managing life after stroke following the interviews that were conducted Stage One of the project. While there are many important lessons, we believe one group that could benefit from these lessons are healthcare professionals. This is because the insights gathered have helped to shed light on the importance of healthcare professional's interactions with stroke survivors.
Their stories have shown how their attitudes and behaviour can impact on a person as they adjust to life after stroke. We believe sharing stroke survivor stories, and their collective lessons, with healthcare professionals can help inform them of how their behaviour can impact survivors of stroke. We hope this will encourage increased compassion and understanding for the experiences of stroke survivors. As a result, we hope this can help improve the way stroke survivors are supported during their recovery across the country.
Digital stories were co-created with participants from Stage One of the study. Consenting participants had the choice between three options of participation: online workshops (max. 6 participants), an online bulletin board or as an advisor. 6 participants have been actively involved in the co-creation process through a series of online workshops. An additional 6 participants joined through the online bulletin board and as advisors to support the development of the digital stories.
There were 5 workshops that took place over the course of this stage of the project to help participants design what the content of their stories would be and how the participants can go about creating these stories with the support of the research team. These workshops helped achieve the following important steps towards co-creating the digital stories:
(1) Identify important lessons to share with healthcare professionals from the interviews that took place in Stage One of the project.
(2) Co-design how these important lessons will be effectively communicated to healthcare professionals through digital stories.
(3) Co-create the digital stories so they are ready to be shared.
(4) Finalise digital stories and begin the communication of the key lessons learned to healthcare professionals.
Following our discussions in the workshops, the following plan for how the digital stories would be structured followed the plan outlined below:
To view the final co-created digital stories we have created, please click the button below.
This research is funded by Glasgow Caledonian University.
