Exploring the personal stroke and rehabilitation experiences of older adults with chronic stroke during the COVID-19 pandemic: a qualitative descriptive study

ABSTRACT

Purpose

The purpose of this study was to explore the personal stroke and rehabilitation experiences of older adults with chronic stroke living in a mid-sized Northwestern Ontario city in Canada during the COVID-19 pandemic.

Methods

A qualitative descriptive approach with a constructivist worldview was used. In addition, a semi-structured interview guide was used to gather the participants’ perspectives on their experiences throughout stroke recovery. Ten participants were interviewed, including six males and four females. The interviews were completed, transcribed, and analysed using inductive and deductive content analysis. Multiple steps were taken to enhance data trustworthiness.

Results

Six main themes and eight related subthemes emerged. These included: getting help is complex, the effects of stroke are multifaceted, losing rehabilitation services during the COVID-19 pandemic, overcoming hardships but not alone, “If you don’t use it, you lost it”: rehabilitative success is based on one’s actions, and “look at me now”: the importance of taking pride in one’s successes.

Conclusions

One unique finding was that the participants used this study as an opportunity to teach and advocate for future stroke survivors which is not often seen in qualitative stroke rehabilitation research. Future stroke research should place emphasis on both the positive and negative experiences of this population.

KEYWORDS:

• Exercise
• rehabilitation
• stroke
• experiences
• COVID-19

Introduction

Stroke is the leading cause of adult disability in Canada (Andres et al., 2017). At least every 30 minutes, one new person has a stroke in Ontario, and this rate will continue to increase with our ageing population (Andres et al., 2017). As a large portion of the population is affected by stroke, rehabilitation access and services are also essential. In alignment with the Ontario Health: CorHealth Ontario’s Community Stroke Rehabilitation Model of Care (Corhealth Ontario, 2022), persons with stroke should receive rehabilitation. Stroke rehabilitation is a critical component of recovery, helping patients to regain lost skills and relearn tasks to gain independence. As an essential part of the care continuum, stroke rehabilitation should be supported through community-based programming, including home-based and outpatient programmes (Andres et al., 2017; Corhealth Ontario, 2022).

Physical inactivity is very common immediately post-stroke, but also into the chronic stage (Saunders et al., 2014). Physical inactivity can inhibit individuals from reaching their long-term rehabilitation goals regarding improvements to their impairments, functional limitations, and general well-being (Saunders et al., 2014). Due to the effects that being sedentary can have on an individual after a stroke, physical activity is important to promote (Saunders et al., 2014). Remaining inactive can pose many risks for an individual’s health, including increased risk for diseases like obesity and negative effects on psychological health (Gaetano, 2016). One way to combat this is through exercise (Chen & Rimmer, 2011). Exercise is a common type of rehabilitation known for its positive effects on the body after a stroke (Chen & Rimmer, 2011). It is also seen to have improvements in relation to the psychosocial effects and improvements in health-related quality of life (Chen & Rimmer, 2011; J. J. Eng & Reime, 2014; Michael et al., 2009). To promote exercise for those who have had a stroke, it is important to understand the facilitators and barriers they may face to ensure they have the tools needed to partake in exercise comfortably.

Despite the numerous benefits exercise can provide to stroke survivors, one barrier is that patients are not always aware of the benefits exercise can give them (Nicholson et al., 2017). It is important to ensure that all information regarding rehabilitation and exercise is understood by patients as this may be something they want to partake in. In particular, stroke survivors also face many barriers to initiating rehabilitation and exercise such as previous trauma from the stroke, lack of motivation and, in particular, a lack of available services (Donio et al., 2019; Nicholson et al., 2017).

Geographical disparities in available services can pose a barrier whereby those in more remote locations or smaller townships have less access to healthcare in general (Kapral et al., 2020; Shurrab et al., 2017). Specifically, this can include rehabilitative services and programmes. For example, a 2017 study found that people in Southern Ontario, in comparison to Northern Ontario, experienced half as many cardiovascular events from a sample of five million participants (Shurrab et al., 2017). It was reported that those in the Southern region had more access to healthcare systems, more medical visits and check-ins, and a lower rate of re-admission after a stroke compared to Northern Ontario cities, resulting in worse outcomes for patients in the North (Shurrab et al., 2017). Although there are differences in availability and access to rehabilitation services between Northern and Southern Ontario, there is a need to determine how geographical disparities influence one’s experiences with access and use of services in their region.

Due to the Coronavirus 2 (COVID-19) pandemic, the pathway through stroke rehabilitation has changed (Torriani-Pasin et al., 2021). The pandemic made it much more difficult for individuals to access rehabilitation services. At the time, communities lost most or all of their services, and resources due to related public health restrictions (Torriani-Pasin et al., 2021). At-home rehabilitation emerged during the pandemic in response to the restrictions at that time (Torriani-Pasin et al., 2021). Given that virtual rehabilitation emerged during the pandemic, exploring experiences related to preference for community or home care in either a virtual or hybrid delivery format is warranted post-lockdown restrictions. In other countries, hospitals and rehabilitation facilities have continued using hybrid services for those living with chronic disease or other musculoskeletal injuries (Khatib & Hlayisi, 2022; Wood et al., 2023). Hybrid services have been seen as beneficial for patients and care providers thus far, although further research is warranted on this new topic (Khatib & Hlayisi, 2022; Wood et al., 2023).

Within any population, specifically those that have undergone a life-changing experience such as a stroke, understanding their personal experience is important to gain a broader perspective (Rego, 2021). After a stroke, individuals can be affected by changes to their physique, emotions, personality, thinking, perceptions, communication, and living arrangements, and that is why their unique perspectives and experiences are so important to understand (Northcott et al., 2016). Personal experiences can be described as knowledge that is obtained through the individual directly, rather than from someone else (Rego, 2021). In order to understand someone’s experience, directly speaking to the person and allowing them to explain their own experiences specifically with a chronic disease such as stroke, is essential to gain insight into the condition.

As stroke continues to be the leading cause of adult disability in Canada, understanding the rehabilitative needs of these individuals is essential to ensure they are receiving proper care to reach their own sense of independence (Andres et al., 2017). This is particularly important for those living in remote and smaller cities in Northwestern Ontario where there are fewer resources and services in comparison to Southern Ontario (Shurrab et al., 2017). The literature shows that quantitative measures have been used to gather information about stroke survivors’ experiences from an objective lens (Brajkovic et al., 2009; Chen & Rimmer, 2011; Michael et al., 2009; Nicholson et al., 2017; Rimmer, 2008). From a qualitative research approach, international research has shown that qualitative methodologies allow participants to share their experiences further by being able to expand on their thoughts and experiences (X. W. Eng et al., 2014; Lou et al., 2017; Luker et al., 2015; Pishkani et al., 2019; Sadler et al., 2017; Sahely et al., 2023; Taule et al., 2015; White et al., 2012). Therefore, a qualitative research approach aligns best with the goals of this research project. In addition, at the time of this study, due to the COVID-19 pandemic, there is also limited research regarding the related effects on rehabilitation specific to stroke. It is hoped that the outcomes of this research can be used to optimize the recovery experiences for future survivors from a wellness and geographical perspective.

Methodology

Study overview and approach

The purpose of this qualitative study was to explore the personal stroke and rehabilitation experiences of older adults with chronic stroke living in a mid-sized Northwestern Ontario city during the COVID-19 pandemic using semi-structured interviews. This study used a descriptive approach (Kowalski et al., 2018) which involves exploring a phenomenon with no attempt to connect the information or explain the outcomes (Kowalski et al., 2018). Because this study was qualitative in nature, it allowed participants to expand on their personal experiences related to their stroke and rehabilitation processes to gather an account of their journeys. With regard to a philosophical worldview, a constructivist approach (Kowalski et al., 2018) was taken throughout the study development, implementation, and interpretation. This was based on the idea that multiple realities exist, and that meaning was varied and complex depending on context and experience (Creswell, 2014). As a result, we adopted a stance where there were no distinct set of emotions or outcomes expected, and therefore, feelings and experiences were subjective (Kowalski et al., 2018).

To mitigate bias during the process, the authors did recognize their own positionality (i.e., the first author being a young, educated, and active Indigenous female) which could have influenced the research study via data collection, analysis, and interpretation of the findings (Lincoln & Guba, 1985). Although this study topic fell within our academic backgrounds and knowledge, none of the authors have lived the experience of having a stroke. This could have impacted the research findings. To enhance the trustworthiness of the data, credibility, confirmability, dependability, and transferability were assessed throughout (Lincoln & Guba, 1985). Some of the processes included member checking, constant reflection, and an audit trial to promote trustworthiness amongst the process and team members (Lincoln & Guba, 1985).

After receiving approval from two local research ethics boards (local university and rehabilitation hospital), recruitment began. All participants chose to conduct the interview over the telephone, rather than a Wi-Fi-compatible device when offered both options. Before the interview began, informed verbal consent was obtained through a telephone script pertaining to the guidelines in the consent form. Once consent was given, the interview was then completed by following the interview guide (see Figure 1). The interview guide was divided into five sections which included questions on: demographics, post-stroke life experiences, rehabilitation after stroke in the host city, barriers and facilitators to rehabilitation and exercise, and the COVID-19 pandemic in relation to rehabilitation and exercise experiences (X. W. Eng et al., 2014; Taule et al., 2015). Examples of some questions included: why do you think it is important to understand the experience of those who have had a stroke? Can you walk me through the day your stroke occurred? What was your discharge from hospital experience like? If you were to rank your rehabilitative experience from zero to five, what would you rank it? What does a [number] look like? What would have enhanced your rehabilitation experience during the pandemic? Each interview ranged from 30 to 60 minutes, depending on how much each participant wanted to share and was audio-recorded with permission from all participants.

Figure 1. This figure shows the interview guide that was used for this study. The interview guide was semi-structured in nature which allowed the interviewer to discuss the questions listed here, in addition to ask other questions, if it would help tell their story.

Inclusion and exclusion criteria

Participants were included if they were diagnosed by a physician with a stroke, were discharged from the hospital, and had their most recent stroke more than six months ago (chronic stroke) before starting the study. There were no specific inclusion criteria related to gender, sex, or age characteristics to participate in this study. There was no maximum time post-stroke for participants to be included or excluded. Participants must have also felt comfortable, willing, and able to engage in an interview regarding their stroke and needed to be able to give informed consent. This resulted in all individuals being able to communicate with the interviewer on their own. No participants needed extra support. Individuals saw a series of pre-screening questions in the information letter outlined by the above criteria, which ensured they met the criteria and were confident to participate in an interview.

Participants who had a transient ischaemic attack as their main diagnosis were excluded, as the side effects of this type of stroke may not last long or may not cause permanent damage, and even go unnoticed in some cases (Frizzell, 2005). Those who had a stroke less than six months ago were also excluded from the study as they may not have yet reached the steady state of recovery that often occurs about six months after a stroke (Sun et al., 2015). Due to the disparities in health services between Northwestern and Southern Ontario (Donio et al., 2019) only those living in the mid-sized Northwestern Ontario city were included in the study. It did not matter where participants were living at the time, although all participants were living at home. All participants were also required to have access to a telephone or Wi-Fi-compatible device, speak English, feel comfortable, and be able to answer questions related to their stroke experience.

As this study was conducted in a completely remote fashion to adhere to social distancing protocols due to the COVID-19 pandemic, participants who did not have access to a telephone or Wi-Fi-compatible device were not able to participate. In the literature, face-to-face interviews are known as the “gold standard” of qualitative research (Novick, 2008). As this research was conducted in the midst of the pandemic, this meant remote modes needed to be employed (Self, 2021). Some advantages to telephone interviews include reduced cost and time, a more comfortable environment to address sensitive topics, and a less invasive process for the participant (Self, 2021). On the contrary, some disadvantages include technological problems and not being able to see non-verbal cues (Self, 2021). These advantages and disadvantages were considered when deciding upon a research method and it was deemed that the advantages outweighed the disadvantages at that point in time.

Participant recruitment

Purposive sampling was used with the intent of choosing participants that directly related to the proposed research study (Kowalski et al., 2018). This technique was used at local facilities within the area by putting up posters (e.g., community centres, exercise facilities, outpatient rehabilitation facilities). This technique had great success. Participants started by emailing the contact researcher. Once in contact, the contact researcher would call the participants, go through the pre-screening eligibility questions to deem eligibility, and then set a date for the interview. In addition, snowball sampling was used whereby participants in the study or who participated or had seen the poster were asked to inform other prospective participants which was also successful. No members of the research team had been involved in any of the participants’ care journeys. All data collection measures were completed by the contact researcher (NL) to ensure reliability in the interview process. The sample size was justified using the process of data saturation, which is the most commonly used method in qualitative studies (Fusch & Ness, 2015). Based on the qualitative studies that used semi-structured interviews to discuss stroke survivors’ rehabilitation experiences, 10 to 15 stroke survivors was the expected range needed for data saturation (X. W. Eng et al., 2014; Lou et al., 2017; Luker et al., 2015; Pishkani et al., 2019; Sadler et al., 2017; Sahely et al., 2023; Taule et al., 2015; White et al., 2012). As all data collection was conducted by NL, it was noticed around interview eight that similar themes were being discussed. To ensure data saturation was met, two more interviews to reach a total of ten were completed. As data analysis was completed, it was evident that ten interviews were sufficient and data saturation was reached as no new themes emerged. To confirm this, two members of the research team (EP and TK) also reviewed the transcripts to confirm data saturation had been met.

Data analysis

Descriptive statistics and visual inspection were used to analyse the age, gender, number of strokes, and type of stroke. The interviews were transcribed verbatim, and imported into NVivo^©, an effective and efficient tool often used in qualitative research (Zamawe, 2015), for analysis. Inductive content analysis was used to ensure there were no presumptions regarding the themes generated, and that the findings were grounded in the transcribed data (Kowalski et al., 2018). Deductive content analysis was used to organize two main categories in line with the study purpose (Kyngas & Kaakinen, 2019). For the purpose of this paper, the term “categories” refers to the division of themes and their related subthemes. Although the interview guide was not purposely designed with categories in mind, participants discussed two different stages of their experience with stroke: actual stroke experience and the stroke rehabilitation journey. Themes were then further generated inductively and placed under each category. Inductive content analysis was used to ensure there were no presumptions regarding the themes generated, and that the findings were grounded in the transcribed data (Kowalski et al., 2018).

A six-phase guide was used to conduct this type of analysis and ensure accuracy of the inductive content analysis process (Braun & Clarke, 2006). The first step was to become familiar with the data by transcribing the interviews and reading the transcripts multiple times (Elo et al., 2014). Next, transcripts were read (NL) and looked at for common ideas and words on NVivo to generate the initial codes (Zamawe, 2015). From this initial coding step, 60 codes were generated with these data and were generally organized within the two categories. This was an iterative process where the common ideas were generated over several reviews of the interview transcripts after a coding process was established. This coding process was determined by the researcher (NL) and the principal investigator (TK) where it was decided that any quotations that were relevant or captured something about the research question would be included, rather than only using a specific word (Maguire & Delahunt, 2017). Open coding was used, meaning there were no pre-set codes, but the codes were modified as the process evolved (Maguire & Delahunt, 2017). Some examples of the codes used were: importance of rehabilitation, exercise, loss, perserverance, confused, support, COVID-19 hardships. The third step was to search for themes which was completed with the nodes from NVivo (Zamawe, 2015). Themes were generated using a combination of both participant quotations and stand-alone phrases to enhance the understanding of the themes for the reader. Once the initial themes were generated, the next step was to review the themes with other members of the research team, including the principal investigator (TK) and two committee members (EP, PS). This was done multiple times and also included moving backwards through the previous steps to ensure the data were represented accurately. The themes were then defined and described in the final document once all members of the research team were in agreement. A pseudonym has been used to replace the participant’s real name in order to protect anonymity and personify the findings.

Results

Participants

In total, 10 participants completed the study. The age of participants ranged from 57–80 years (mean [M] = 69.2, standard deviation [SD] = 8.6), and included four female (40%) and six male stroke survivors (60%). When asked how many years ago their stroke was, the answers ranged from 1–12 years ago (M = 5.6, SD = 3.6). Forty percent of participants had a haemorrhagic stroke, 30% had an ischaemic stroke, and 30% did not know what type of stroke they had. A summary of each of the 10 participants’ rehabilitative journeys that were extracted from the interview notes can be seen in Table I. To compare between participants, rehabilitation processes and milestones were organized by time for each participant, where data were available.

Table I. The rehabilitative journey of sample participants.

	Individual Characterisitcs	Mode to First Point of Care	Hospital Admission	Hospital Discharge	Hospital Discharge	Rehab Began	End of formal rehab	Beginning of rehab on own
		0–1 hour	1 hour − 24 hours	1 day − 7 days	7 days − 2 weeks	2 weeks − 1 month	1 month − 6 months	6 months +
Henry	57-years-old male. Hemorrhagic stroke 5 years ago.	Drove self to hospital	Admitted to hospital		Released from hospital	Admitted to rehab center		Ex. and Sp.
Nancy	65-year-old female. Hemorrhagic stroke 5 years ago.	Ambulance to hospital	Admitted to hospital	Released from hospital		Began rehab at center		Ex. and Sp.
Samuel	80-year-old male. Ischemic stroke 2 years ago.	Ambulance to hospital	Admitted to hospital			Released from hospital	Returned home	Ex.
Victor	77-year-old male. Unknown stroke 10 years ago.			Had heart attack surgery	Returned home	Diagnosis of stroke		Ex.
Frank	77-year-old male. Unknown stroke 4 years ago.	Ambulance to hospital	Admitted to hospital	Released from hospital				Ex. and Sp.
Dorothy	71-year-old female. Hemorrhagic stroke 3 years ago.	Family took to hospital	Admitted to hospital		Released from hospital	Admitted to rehab center	Released from rehab center	Ex.
Paul	61-year-old male. Ischemic stroke 12 years ago.	Ambulance to hospital	Admitted to hospital					Ex. and Sp.
Evelyn	61-year-old female. Ischemic stroke 5 years ago.	Family took to hospital	Admitted to hospital	Released from hospital				Ex. and Sp.
Irene	64-year-old female. Unkown stroke 1 year ago.	Ambulance to hospital	Admitted to hospital		Returned home		Began rehab at center	Ex. and Sp.
Eli	79-year-old male. Hemorrhagic stroke 9 years ago.	Ambulance to hospital	Admitted to hospital	Released from hospital				Ex. and Sp.

This table shows the individual characteristics and rehabilitative journeys of the sample. P. is used to define participant; rehab is used to define rehabilitation; Ex. is used to define that the participant was still partaking in exercise; and Sp. is used to define that the participant was seeing a specialist(s). P. 04 had a unique experience as they did not realize a stroke had occurred due to other complications with heart attack surgery. All participant names in this table are pseudonyms to protect participants’ anonymity and confidentiality.

Overview of themes and subthemes

Two distinct categories were used to group the themes and subthemes which included: 1) actual stroke experience and 2) the rehabilitation journey. In total, six main themes and eight related subthemes emerged from the analysis. Table 2 displays the category and thematic overview of the findings. Descriptions and context from the participant’s point of view are below.

Table 2. Overview of themes and subthemes.

The Actual Stroke Experience	The Rehabilitation Journey
1. Getting Help is Complex Checking With Other’s First Not Understanding Situational Urgency	3. Losing Rehabilitation Services During the COVID-19 Pandemic	5. “If you don’t use it, you lose it”: Rehabilitative Success is Based on One’s Actions Determination and Open-Mindedness About Rehabilitation Forced Independence Can Lead to Next Rehabilitation Steps
2. The Effects of Stroke are Multifaceted Losing Physical Abilities Understanding Mental Hardships	4. Overcoming Hardships, But Not Alone Positive Encouragement to Help Make Progress Needing Support After Secondary Diagnosis	6. “Look at me now”: The Importance of Taking Pride in One’s Successes

This table provides a visual representation of the six themes and subthemes that emerged from the interviews. Themes were divided into two initial categories of the Actual Stroke Experience and the Rehabilitation Journey.

Actual stroke experience

The first category had two overarching themes, along with four related subthemes. These included and are titled: 1) Getting help is complex (i.e., checking with others first; not understanding situational urgency); and 2) The effects of stroke are multifaceted (i.e., losing physical abilities; undergoing mental hardships). Each theme is outlined and described below.

Getting help is complex

During each of the interviews, participants described what happened once they realized they had had a stroke, and how they got to the hospital. Most were transported to the hospital by ambulance. Many noted that this was not a simple process because they did not realize what was happening to them. Several shared that they needed convincing by a loved one to get help at the time but were grateful for this after the fact and resulted in the subtheme; checking with others first.

We have a daughter that is a physician in [a city] … So my husband said ‘I’m calling her’ … and she said, ‘Put mom on the phone.’ So I went on the phone and after finishing talking to her for a few minutes, she said, ‘Mom, I think you should listen to Dad. You should go to the emergency. You are not sounding like yourself at all. There’s something missing in your conversation. [Dorothy]

… but when I tried to get out of the car, I was instantly sick. Like, I was vomiting and diarrhea and I couldn’t stand up. [I] had no strength in my legs. So he [my husband] came around, got me in the other side of the car and drove me home so [my daughter] could see me, because she’s a nurse. And he thought, you know, ‘[S]he’ll know what’s going on.’ But she just looked at me and said, ‘[N]o, you need to go to the hospital. [Irene]

A second subtheme; not understanding situational urgency, also emerged as participants described that after deciding that they needed to go to the hospital, it was not a straightforward process either. Most of the participants shared that it was not as simple as calling emergency services as soon as they realized something was wrong. Participants either wanted to wait until the symptoms improved or did not want to acknowledge the urgency of the situation, even after verifying with someone else that something was wrong.

She [my daughter] called the ambulance right away and [if it was not for] my daughter, [if she] wasn’t there, I probably would not have called 911 because my wife has passed and I had nobody else to talk to if she wasn’t there. I don’t know what the hell I would have done. I probably wouldn’t have done anything. I would have just sat down … until I was okay. I don’t know. [Frank]

Finally, most participants decided to call emergency services, but others had a family member drive them to the hospital, or even drove themselves after several hours. Many participants spoke about wanting to change how they approached seeking help in hindsight knowing now that it was an emergent situation.

And ironically enough, I got in my car and drove myself. It was an automatic car. I lived way out at the time … which apparently also is not uncommon. Apparently, people that live out in the country have a tendency to drag themselves in rather than calling an ambulance and get the volunteer services, or whatever else and [have] no thoughts whatsoever that [it might be] a stroke. [Henry]

The effects of stroke are multifaceted

As participants were describing their experience with stroke, the effects that were associated with having a stroke were also shared and highlighted as burdensome. These effects were something they could not forget due to the impact it had on them immediately and further into their everyday life and well-being. Two subthemes emerged with the first being; losing physical abilities. The physical effects from the stroke were most often what participants described in detail when asked about their experience. For example, losing some type of physical ability (e.g., sensation in arm/leg, not being able to move their face, not being able to get up off the floor) was described by many as what they woke up to following their stroke; this experience left a lasting impression.

[I] didn’t even think stroke initially, but woke up and my right arm was completely, completely numb. But, in a strange way. Not comparative to when you sleep on something. But not the same in the fact that as I woke up [I] could feel it. I always could feel it. I just couldn’t move it. And as I was explaining after, it was you know, [my] brain didn’t recognize it as [my] arm anymore. So part of me … I knew it was my arm, whatever area of the brain … it was very confusing. [Henry]

So, until I had some energy to actually start doing some exercise, well not exercises for real, but I was just expected to do a little bit of walking along the hallway in the hospital and I couldn’t even do that. [Dorothy]

As a result of the loss of physical abilities, many participants felt afraid and began to lose hope as it was difficult to understand what was going on. These feelings were exacerbated when they were in the hospital and asked to perform tasks such as walking; most participants could barely get out of bed. This was difficult for all participants as they described that they felt as if their independence was being taken away. According to participants, losing physical abilities in relation to the stroke experience such as walking or being able to use a part of their body was life changing and difficult to come to terms with.

Another concept that was mentioned often when describing their actual stroke experience was undergoing mental hardships. For example, having mental fatigue, losing mental capabilities such as memory, and having heightened emotions were noted across all participants.

That’s one thing … I can’t always measure is the, the mental things. Like, sometimes I just go to to reach for a word or try to remember something from two seconds ago and it’s it’s just not there. Or sometimes I still say the wrong name. Like, I’ll be saying, you know, ‘I need to get a spoon,’ but really, I need to get a fork. And every now and then, I still go down that nasty little road. My husband will go ‘That’s a fork.’ I went, well, ‘That’s what I said.’ Not perfect, but it is what it is. [Nancy]

These were particularly highlighted as experiences that the participants had when they were in the hospital undergoing acute care and described how they were feeling mental and emotional hardships they had never experienced before. One major event that was noted as a contributor to mental hardship was having one’s driver’s licence revoked. Interestingly, all participants spoke about the moment this occurred without being asked, and how it felt as if a piece of their freedom was being taken away.

They took my driver’s license away. And that was also hard for me to take because I guess I wasn’t realizing how bad it [the stroke] was. I just thought that it was mean and they took my license away for no good reason, you know? They could tell that I had trouble seeing … which was true. [Dorothy]

The rehabilitation journey

The second category, the rehabilitation journey, had four overarching themes (along with four subthemes). These included: 1) Losing rehabilitation services during the COVID-19 pandemic; 2) Overcoming hardships, but not alone (i.e., positive encouragement to help make progress; needing support after secondary diagnosis); 3) “If you don’t use it, you lose it”: Rehabilitative success is based on one’s actions (i.e., determination and open-mindedness about rehabilitation; forced independence leads to next rehabilitation steps); and 4) “Look at me now”: Taking pride in one’s successes. It should be noted that themes one and four in this category do not have subthemes. This is because these themes encompass more general information around this topic and do not have specific sub-topics to be discussed, whereas the other themes do.

Losing rehabilitation services during the COVID-19 pandemic

When asked how the COVID-19 pandemic affected their recovery, one concept that emerged across all the participants was losing their access to rehabilitation services. This was described in a negative context whereby the participants had a difficult time adjusting to having no rehabilitation services after being dependent for several years. This affected participants physically; many believed they had taken several steps backwards in relation to their progress as it was difficult to make the same improvements independently from home.

Well, there was the period of time or periods of time where I wasn’t able to go for physiotherapy, for example. I felt that I was making wonderful progress with my physiotherapist and then I had to stop seeing him. And I really think, and I still do to this day, I believe that that was detrimental to my recovery. [Henry]

Participants also mentioned how they experienced a lack of socialization without their consistent rehabilitation programming. Several participants mentioned missing socialization with their healthcare practitioners, those who worked in the clinics, and other patients who were undergoing care or participating in exercise classes. Those who had a stroke during or just before the pandemic (four participants) were denied any rehabilitation programming due to pandemic restrictions which also hindered their ability to make any physical or mental improvements. According to these participants, the loss of rehabilitation services during the COVID-19 pandemic impacted their stroke rehabilitation in a negative way.

Since the um pandemic I was going to the [local] stroke meeting support group but they haven’t been able to have live in-person meetings, obviously for the last two and some years. They do have some programs that I don’t usually participate in because I pretty much [have] done all the programs in the past. But … it’s nice for people to be able to get into that group and share thoughts or just even like, the social experience to know that people are out there and people are doing this … sharing the same problems, so that [group program] will be starting again hopefully. [Nancy]

Overcoming hardships, but not alone

When participants were asked about their journey through rehabilitation, one concept that was often repeated was the constant positive support that was received during their care. This ranged from formal support from healthcare providers who went above and beyond to help them make progress, to informal support from family, friends, and co-workers who were there cheering them on and helping in any way they could. It also included other patients who motivated one another to keep pursuing rehabilitation. The first subtheme that emerged was positive encouragement to help make progress which was described by participants as owing their success and challenges they had overcome to others. This was due to the overwhelming positive encouragement that was received while undergoing rehabilitation throughout their journey.

I think people, more than anything, uh made that the world of difference to me as a patient … being helped and being taught how to do things properly … I don’t think I found one person that … did anything that made me feel uncomfortable in any way, shape, or form. [Frank]

I found a gentleman that was, he was from [a non-profit stroke program]. He was coaching us to walk at the [mall]. I found him to be really helpful because he was just really encouraging. He never thought any amount of walking you did was not [good enough] … Then he would tell us about areas in the community that, you know, would be the same as walking at [the mall]. Like, he would say, ‘If you walk from here to here, that would be the same amount as walking at the [mall] program,’ and what not. [Dorothy]

Many participants described how happy they were with their progress because they could remember the people who went above and beyond to encourage them to keep pushing through. Most of the participants who had the opportunity to undergo group-based rehabilitation classes (i.e., fitness or group sharing) also mentioned how beneficial it was to have positive encouragement from people going through the same experience as it allowed them to empathize with one another.

The second subtheme that emerged was needing support after secondary diagnosis. In addition to the ramifications associated with a stroke, all participants encountered other injuries or diseases (i.e., cancer, heart attack, broken hand, brain injury, dementia) during their stroke rehabilitation journey. This was a challenging time for many participants, as they became frustrated due to needing more rehabilitation services related to their secondary diagnosis. Participants mentioned multiple times how thankful they were for finding these healthcare providers and how much support they provided them during this challenging time.

And then [brain injury service], did a lot of work with me too … They’ve been really good for me, and they actually do still work with me … They were probably one of the best as far as far as having helped me the most. Yeah, they still work with me everyday … If I need anything, they’re always there for me. [Paul]

… I had actually slammed my hand in a car door while I was in the midst of having my stroke at the very beginning. I had um injured a couple of fingers very badly, so fortunately I had a connection at the [local rehabilitation clinic] who I happened to run into and he said, ‘You have to come into the clinic and I’m going to look at that and we're going to fix it up.’ And he did. He made sure that my finger, not perfectly straight, but it did finally get to be straighter after months of therapy. [Nancy]

In addition, participants highlighted that although stroke is a catastrophic event, there are also many other ramifications that come afterwards that may not necessarily be stroke related. Therefore, the support one finds for those subsidiary conditions is also essential to one’s stroke rehabilitation success.

“If you don’t use it, you lose it”: rehabilitative success is based on one’s actions

In relation to the rehabilitation journey, participants mentioned how much they had learned during the process, even if it was something they did not want to do. All of the participants expressed that they were frustrated and upset after their initial stroke diagnosis and before beginning rehabilitation; however, many stated that they learned to trust the process and became determined to see results. Two subthemes emerged with the first being determination and open-mindedness about rehabilitation. Based on these participant accounts, being open-minded was essential to rehabilitative success. At the beginning of the rehabilitation journey, all of the participants explained how they were apprehensive about beginning any type of rehabilitation because they felt defeated. Through being open-minded, participants said they realized the only way to get better was to begin rehabilitation which is where their determination started. All participants shared how they tried everything that was offered to them with the hopes they would one day reach their goals and get back to what they used to do.

Well, you know, once I realized what had happened and what was required, I was at their [healthcare providers] mercy. I did everything they asked me to do and some things were truly difficult for me to do, but I tried and even learned some new things. I never said no to anything. [Dorothy]

I tried everything they wanted me [to]. Everything they said, I did. Yeah … you don’t say no to that … you do it [what the healthcare providers say] so it can help you. [Frank]

Many stated that learning about and using the tools to be successful with the help of others, further allowed them to learn how to do things independently again. According to all participants, being determined and open-minded allowed them to learn the tools to be successful in rehabilitation and further take these skills into their everyday lives to practice on their own.

The second subtheme, forced independence can lead to next rehabilitation steps. Participants felt lost and unsure of what would be next after they finished their programmed rehabilitation. They had all reached a point where they had completed the maximum amount of rehabilitation services and were forced to make decisions about what would be next regarding their rehabilitation. This was because healthcare providers told participants there were no rehabilitation options remaining and left the decision to the participants as to what would be next. All the participants quickly realized that it was up to them to ensure their rehabilitation journey did not stop because the programming stopped.

No [I was not offered rehabilitation], I figured that [exercise] out on my own. I started going to the pool and I’ve been doing it ever since. Five days a week I’m in the pool at 6:00 in the morning. [Victor]

… I’m just lucky. I think that I was able to find people like that [other rehabilitation services] on my own. I think that [having to find own rehabilitation] is my biggest complaint and the biggest thing that I would want to get better in [city] is you shouldn’t [need to find your own rehabilitation because] you’re sick. You shouldn’t have to go out and find things [rehabilitation] on your own. [Nancy]

When participants spoke about their life after formal rehabilitation, it was always associated with exercise; this was the primary way for them to maintain rehabilitation at home. Participants mentioned how they had to take the initiative themselves because they realized they did not want to cause any further problems (i.e., heart attack, weight gain, another stroke) or lose any of the progress they had made. All participants did partake in exercise in some capacity.

“Look at me now”: the importance of taking pride in one’s successes

When discussing the participant’s rehabilitation journeys, all participants had at least one story in which they discussed how seeing their own success was a life-changing moment. For example, many participants shared how far they had come from the first day of their stroke and expressed great pride in the progress they had made. There were also a few participants who could remember a singular event in which they experienced success for the first time.

I was able to walk down the aisle for my son’s wedding, by the way … Yeah. They gave me a cane the day that we were going to go to the rehearsal. I just remember, like, I just wanted to hug and kiss the therapist. [Nancy]

So it was on, you know, a day or two before I started actually, I think it was only a day that I could start lifting my right arm slightly again. And uh I just remember being super excited about that. Like yelling ‘Look, I can lift my arm!’ and the nurse was like, ‘Oh wow, that’s very good. [Henry]

According to participants, acknowledging these successes was integral for helping them move forward, especially during the more challenging times throughout their rehabilitation journey. Most participants also highlighted how looking back at their successes helped them remain determined.

Discussion

The purpose of this study was to explore the personal stroke and rehabilitation experiences of older adults with chronic stroke living in a mid-sized Northwestern Ontario city using semi-structured interviews. Findings are discussed below within the larger international context of qualitative stroke research, in addition to two recommendations that were given to local stakeholders.

Current findings in relation to international qualitative stroke research

When comparing the findings from this study to other qualitative international stroke research, the findings are similar to other qualitative studies. Theme one will be discussed below in relation to future directions. Theme two discussed the effects after stroke, similar to the findings from a systematic review conducted by Luker et al. (2015), where psychological emotions such as fear, anxiety, and frustration were present during rehabilitation. These emotions were similar to the feelings of the participants in this study, although only mentioned when the stroke occurred, not during rehabilitation. Another systematic review found that stroke is a profound disruption due to physical impairments, uncertainty, and lack of independence (Lou et al., 2017). These findings corroborate the findings from our study, highlighting how impactful the physical and emotional effects are after a stroke occurs, despite their living location.

Recent literature has looked into the ramifications patients have faced around the COVID-19 pandemic and how it affected their care. One study in particular looked into stroke survivors who accessed rehabilitation services during the pandemic (Sahely et al., 2023). Findings there were similar to the findings found in this study regarding the COVID-19 pandemic. Sahely et al. (2023) noted that patients felt like their services were disrupted and organizations had to modify their community services that patients usually attended, but this resulted in patients learning self-management strategies. These findings are similar to the participants in our study who had their stroke just before or during the pandemic, as they felt the pandemic affected them negatively. The participants in our study did not mention that it taught them any self-management strategies, but due to the active and self-motivated group who parked in rehabilitation and exercise, it could be said that the pandemic was a factor in helping them develop these skills without them noticing.

Theme four revolved around social support, a theme found in many international qualitative stroke studies (Lou et al., 2017; Luker et al., 2015; Pishkani et al., 2019; Sadler et al., 2017). International research has found that social support can come from healthcare workers (Lou et al., 2017; Luker et al., 2015; Sadler et al., 2017), in addition to family and friend support (Corhealth Ontario, 2022; Lou et al., 2017; Pishkani et al., 2019), which is what participants in our study highlighted as well. As social support is an overwhelming theme across many qualitative stroke studies, it is evident that it is important for any individual, living in any country, to be able to get through this life-changing event.

Theme five showcases how one’s success is based on their own actions. Within the literature, partaking in physical activity because participants learn the importance of it was found in one study by Luker et al. (2015). This is a similar finding to our study as our participants discussed their progress in relation to their physical activity and exercise levels and how it fostered growth. Lou et al. (2017) also found that rehabilitation is a process, which was also a discovery that the participants in our study shared. Future studies should look into ways to support this process as the participants in our study are just one group, at one particular moment in time, and may not represent all stroke survivors worldwide.

The final theme was about how participants learned how important it was to take pride in their successes. Lou et al. (2017) found that those who experienced success also felt a sense of hope and motivation. The participants in our study also discussed how their first success story gave them hope to move forward with their rehabilitation. The same group found that these successes led to a new sense of confidence (Lou et al., 2017), which our participants described here as well. This corroboration of these findings showcases how important success is for an individual undergoing a life-changing experience like stroke, despite their living location, age, or severity of stroke. Overall, the findings from this study corroborate with other international research which suggests that despite a mid-sized city in Canada, which made this study unique, stroke survivors face similar challenges, hardships, and facilitators worldwide.

One finding that was unique to this study in comparison to international research was that all participants had recovered well after their stroke, they all exercised and participated in rehabilitation as a way to maintain the progress they had made, and used this experience to share their stories to teach and advocate for future stroke survivors. The findings from this study tell a story from the day their stroke occurred to their current realities, which in their eyes are positive stories. In comparison to other international research, studies show the hardships, challenges, and frustrations faced by stroke survivors in their rehabilitation journey (X. W. Eng et al., 2014; Lou et al., 2017; Luker et al., 2015; Pishkani et al., 2019; Sadler et al., 2017; Sahely et al., 2023; Taule et al., 2015; White et al., 2012). International research shows that challenges are part of one’s rehabilitation journey, however, the participants in this study, although did face challenges, used this opportunity to highlight that the stroke experience is one that has taught them about perseverance, commitment, and new learnings to make the most out of this new life they are living. Future research should look into ways to give opportunities for stroke survivors to share their stories in order to help other stroke survivors reach a sense of confidence in themselves.

Future implications for local stakeholder groups

Purposeful education about stroke signs and symptoms needed for the general public

Two recommendations emerged from the study interviews that have been shared with local stroke stakeholders. Although this study was conducted in one city, at one point in time, some of these recommendations may guide future research in other areas if the same needs or recommendations are needed. The first is to include purposeful education to the general public about stroke to improve knowledge of warning signs and response time after a stroke.

Over the years, the same reoccurring problem has occurred globally in urban and remote cities wherein the public’s awareness of stroke risks, signs, and symptoms is concerningly low (Fussman et al., 2010; Hickey et al., 2018; Krishnamurthi et al., 2020). Different campaigns (e.g., Face, Arm, Speech, and Time; FAST campaign), in addition to pamphlets and conferences, have been used to raise awareness of the signs and symptoms associated with stroke (Hickey et al., 2018). Although these types of educational methods are important, with no increases in knowledge retention, it is evident that something further needs to be done. For some individuals who are having a stroke, the reason for delayed admission to the hospital can be related to the individual’s shame, uncertainty regarding the stroke, and being in denial or shock (Alegiani et al., 2019). It is also equally important for family members and caregivers to be aware and knowledgeable of stroke signs and symptoms to support the affected individual who may be in denial or not realizing the urgency of the situation, as was seen in this study. It is possible for these to be reasons the current study’s sample did not receive care right away. As stroke admission rates continue to rise, future research is warranted to investigate further why individuals delay their admission when it is know that it is important for treatment to occur right away to mitigate adverse effects (Hickey et al., 2018). It is also important to improve the educational system to the general public regarding stroke to make it more individualized, eye-opening, and more purposeful (Alegiani et al., 2019).

“You shouldn’t need to find your own rehabilitation because you’re sick”: help make access to rehabilitation easier in chronic stroke phase

Through the findings gleaned through the interviews, it is evident that the pathway through stroke rehabilitation is quite complex and individualized. All participants reported going through the typical acute after-stroke care that is common for this population. They were admitted to the hospital, stayed for at least a few days, and were provided with in-patient rehabilitation services and formal rehabilitation programming, showcasing the consistent process remote cities have for stroke patients (Taule et al., 2015). However, in the chronic phase, the participants expressed multiple times throughout the interviews how they felt lost after their formal rehabilitation programming ended. All participants also explained how they had to make their own choices regarding the next rehabilitation steps, and further find services themselves. From what was heard from participants of this study, this process does not appear to align with the recommended steps from the CorHealth Model of Care (Corhealth Ontario, 2022) in which participants need ongoing long-term care and guidance that can be reaccessed at any point in stroke recovery in order to achieve meaningful rehabilitation goals post-hospital stay. This finding can specifically inform clinicians who work in chronic stroke rehabilitative care about the hardships faced in this phase. These findings bring awareness to clinicians to help their patients navigate the chronic stroke phase, provide resources, and help instil confidence to further promote success.

Study limitations

The participants in the current study were all keen to participate in rehabilitation and this research study. Participants included had a range of stroke injuries and resulting severities and complications however most of the participants were recovering fairly well. This may be due to self-selection bias as all participants selected themselves to be involved in this study (Alarie & Lupien, 2021). Due to this, participants who were capable and willing to partake in an interview offered, whereas others with more severe effects may not have been willing to participate. For this reason, the participants in this study may share different experiences compared to individuals living with severe stroke effects. Future research is warranted to explore the experiences of those who are living with these severe effects. It is also important to note that this study may not accurately represent all stroke survivors in the region studied. As described in the literature, self-selection bias often leads to non-generalizable results (Alarie & Lupien, 2021). It should be noted that this study gave insight into the experiences of a group of individuals at one-point in time, who recovered well after their stroke, and the insights they have to offer.

While there was no specific gender analysis conducted as the purpose of the study was to explore the experiences of all stroke survivors, there was a higher proportion of male participants. Future research is warranted to investigate the similarities and differences between genders to be able to look more closely at gendered experiences.

Conclusions

This study explored the personal stroke and rehabilitation experiences of Northwestern Ontario stroke survivors through a qualitative lens during the pandemic. By listening to the stories of stroke survivors, this study identified potential shortcomings in health and rehabilitative service provision that can be considered locally to enhance services and ultimately support the growth and development of long-term community stroke rehabilitation options informed by local patients. For health professionals, this study will give insight into how they can further support their patients (i.e., providing information and support about stroke effects, understanding the importance of support and promotion of support, and instilling confidence in their patients). This study also gave insight into one remote area, highlighting how experiences from stroke survivors are common despite their living location. The findings from this study also confirmed the need for community-based rehabilitation services nearby, that extend beyond the acute phase. Overall, this study highlighted the significant positive impact that receiving rehabilitation support has for stroke survivors and emphasized how it is possible to maintain hope and perseverance even after a life-changing event.

Ethics statement

Ethics was obtained from the Research Ethics Board at Lakehead University [1468765] and St. Joseph’s Care Group Hospital [2022005].

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Notes on contributors

Nicole P. Lee

Nicole P. Lee completed her Masters of Science (MSc) at Lakehead University in the School of Kinesiology. This work represents her MSc thesis.

Erin S. Pearson

Dr. Erin S. Pearson is an associate professor at Lakehead University in the School of Kinesiology.

Paolo Sanzo

Dr. Paolo Sanzo is an associate professor at Lakehead University in the School of Kinesiology.

Taryn Klarner

Dr. Taryn Klarner is an assistant professor at Lakehead University in the School of Kinesiology.