1,573
Views
0
CrossRef citations to date
0
Altmetric
Original Research

Stroke survivors’ experiences and meaning of digital technology in daily life: a phenomenological study

ORCID Icon, ORCID Icon & ORCID Icon
Pages 1334-1342 | Received 13 Apr 2022, Accepted 25 Jan 2023, Published online: 05 Feb 2023

Abstract

Purpose

The aim of the study was to explore the experiences and meaning of digital technology in daily life by stroke survivors.

Materials and methods

A phenomenological study design helped to collect rich and in-depth understanding of stroke survivors’ experiences and meaning of digital technology in their daily life and their perspective of applying digital technology in the implementation of stroke-related telerehabilitation services. Thematic analysis was used for data analysis.

Findings

An overarching theme emerged: A spectrum of challenges, personal preferences, strategies to manage, and attitudes towards the use of digital technology in daily life.

Conclusion

The findings revealed that participants’ different experiences influenced their perceived meaning of digital technology in daily life and the interest to participate in telerehabilitation services.

IMPLICATIONS FOR REHABILITATION

  • Digital technology provides easy access to information for stroke survivors, but can sometimes be difficult to use.

  • Stroke survivors have contrasting preferences for face-to-face and virtual interactions with health professionals.

  • Digital technology has different meanings for different people.

  • Client-centred practice within telerehabilitation for stroke survivors could be enhanced by understanding the clients’ preferences, experiences, and meanings in digital technology.

Introduction

As the length of hospital stay after cerebrovascular accidents or stroke is decreasing, more care and rehabilitation are delivered at home [Citation1,Citation2]. Commonly used digital technologies, such as smartphones, tablets, and computers, have the potential to support individuals’ participation and engagement following stroke [Citation3,Citation4]. For example, stroke survivors have reported that mobile phones can facilitate contact with significant others and emergency contacts, enable participation in recreational activities, as well as and reintegrate in community life like social activities and work [Citation5,Citation6]. Access to a tablet can provide opportunities for stimulation and increase participation in activities post-stroke, through games, therapy, and social networking [Citation7]. Computers can promote independence through paying bills, contacting the authorities, and engaging in non-profit organizations [Citation5]. Implications for the integration of digital technology in the rehabilitation process after stroke include bringing a new meaning in life, regaining independence and increasing participation in activities of daily living [Citation8].

Within occupational therapy, telerehabilitation is a recognized service delivery alternative via two-way interactive telecommunication between a therapist and a patient using digital technologies [Citation9]. The COVID-19 pandemic has highlighted the importance of telerehabilitation for delivering occupational therapy to various patient groups, not in the least stroke survivors. However, there is a risk that these technologies can negatively influence the patient-clinician relationship [Citation10,Citation11]. For example, access to electronic health information and records has been reported to disrupt the traditional expert role of the clinician, leading to distrust in how patients can manage their health without adequate monitoring from the clinician [Citation10,Citation11]. Furthermore, it has been reported that stroke can lead to a decrease in ability to use digital technology [Citation8]. Using applications requires isolated finger movements (an ability to move one finger at a time), speed, and coordination, which are often weaker in people after stroke [Citation12]. Cognitive or language impairments can cause difficulties to set up the device or follow instructions so that support from relatives is often needed [Citation7]. People after stroke often experience the feeling of uncertainty with how to respond to technical issues [Citation7]. Furthermore, stroke survivors tend to think that eHealth programmes are feasible only when a helpdesk for assistance is available in case of a problem [Citation13].

Rehabilitation should be client-centred, tailored to the needs and preferences identified by the stroke survivor [Citation14]. To deliver client-centred occupational therapy and to improve activity-related health outcomes [Citation3,Citation15], it would be relevant to understand the role of digital technologies and gain insight on what meanings stroke survivors associate with technology use. As part of tailoring care, it would also be important to find relevance of digital technology to their daily life [Citation16].

This phenomenological study aimed to explore the experiences and meaning of digital technology in daily life of stroke survivors. To address the aim, two research questions were formulated:

  1. What are the experiences and meaning of digital technology in daily life by stroke survivors?

  2. From stroke survivors’ perspective, what are the possibilities of applying common digital technology in the implementation of stroke-related telerehabilitation services?

Materials and methods

This study was conducted in Estonia, wherein 62% of Estonians aged 16-74 have basic or above basic overall digital skills, which is 4% higher than the statistical average in European Union, according to 2019 Eurostat results [Citation17]. Advisory opinions from Tallinn Medical Research Ethics Committee of the National Institute for Health Development received on 27 January 2021 and Haapsalu Neurological Rehabilitation Centre (HNRC) Board (7-1/42) received on 25 February 2021 were followed. As phenomenology is intended to describe a phenomenon from the perspective of persons who have experienced it, a phenomenological study design [Citation18] was used to explore the experiences and meaning of digital technology in daily life from the perspective of stroke survivors.

Authors’ positionality

The first author is an occupational therapy practitioner in neurorehabilitation, specializing in traumatic brain injuries and stroke. The second and third authors are occupational therapy researchers and educators with an interest in work ability, including digital competence, of adults. The authors’ common interest is exploring the potential of eHealth and telerehabilitation. All authors had no experience of providing telerehabilitation to stroke patients.

Participants

Purposeful sampling with homogeneity strategy was used in the recruitment process. Inpatients of a neurological rehabilitation centre in Estonia, who were referred to occupational therapy with a diagnosis of stroke, were asked to participate in the study. Inclusion criteria were: (1) stroke diagnosis, i.e., at least 2 months after stroke; (2) experience of using digital technology before and after the stroke; (3) willingness to share experience; and (4) ability to understand and speak Estonian. Exclusion criteria were: (1) other diagnosis besides stroke, and (2) severe speech and cognitive impairment. Participants were informed about the study in one-on-one meetings and gave written informed consent before data gathering. The sample size was determined upon reaching data saturation. That is, the data collection was concluded when information was repeated by participants and nothing new appeared in the last two interviews.

Five stroke survivors – two men and three women, aged 52–83 years (mean = 69.4 years) – participated in the study. Two participants had secondary education, one had vocational education, and two had higher education. Four participants were retired, and one was unemployed. Before retirement or becoming unemployed, two participants were professionals, one was a manager, one was a service and sales worker, and one was a plant/machine operator and assembler. Three participants reported using a stationary computer, three were using a tablet, two were using a smartphone, and one was using a laptop.

Data collection

A semi-structured interview with open-ended questions covered the topics of experience, meaning, and healthcare online. The open-ended questions allowed the participants to freely talk about the topics [Citation19], and follow-up questions were asked to elaborate on the topics covered. Unclear responses or misunderstandings were clarified by the interviewer as they occurred. The interviews were conducted by a research assistant – an occupational therapist – who had no prior contact or relationship with the participants and had received training on the interview protocol. Face-to-face interviews were held in the rehabilitation centre’s teaching apartment for trainings, ensuring a comfortable and silent environment, in March 2021. Participants had the opportunity to take a break or discontinue the interview if needed. The interviews lasted between 35 min to one hour.

All the interviews were recorded and verbatim responses to each question were transcribed by the first author. As interviews were held in Estonian language, the recordings were transcribed in Estonian. Following ethical advisory opinions, responses revealing health status were excluded from the analysis. Numbers 1–5 were assigned to participants [Citation20]. Information that the author considered private and possibly damaging, was removed or disguised from data analysis to protect the identity of the study participant [Citation18,Citation21]. The research assistant who conducted the interviews checked and ensured that the transcripts were accurate. Password-protected audio files and de-identified transcripts were stored on two separate external storage devices.

Demographic variables regarding age, gender, education, social status, and occupation were collected to describe the context of the study and study participants as a group. Participants were informed that demographic data would be reported only as an aggregated characteristic, not as individual data [Citation22].

Data analysis

After listening to each recorded interview, a brief reflection was written in the study logbook, in line with Moran [Citation23]. Thematic analysis was then used by the first and last authors, following Braun and Clark’s six analysis stages [Citation24,Citation25]. First, the transcripts were read several times to familiarize oneself with the information. Second, open coding was used to generate initial codes. Initial codes were then grouped into categories according to their similarities. Third, categories were organized into themes. Fourth, quotations that corresponded to a theme of the analysis were extracted, classified, and translated to English language. Fifth, a comprehensive analysis to examine the extent to which the themes contribute to an understanding of the data were done. For each theme, all the included quotations were synthesized to bring the main ideas. Sixth, illustrative quotations were selected. An example of the analysis can be seen in .

Table 1. Presenting how communicating through digital technology versus interacting in person theme was formed.

The first and third authors analyzed the data iteratively. The second author was involved in reviewing and defining the themes during different iterations. Consensus in the analysis was reached through synchronous and asynchronous discussions. Reflections on the interviews and discussions between the authors supported researcher reflexivity.

Ethical considerations

Both written and oral information about the study – including statements on confidentiality of data, anonymity, voluntary participation, and freedom to withdraw at any time without giving a reason [Citation18,Citation26] – were provided. In addition, potential participants were assured that their participation or non-participation in the study would not have any impact on the regular rehabilitation treatment. People who were not able to give consent for reasons of medical condition, speech or cognitive impairment were not included in the study. Written consent was acquired before data collected started.

Findings

The analysis revealed an overarching theme: A spectrum of challenges, personal preferences, strategies to manage, and attitudes towards the use of digital technology in daily life. This overarching theme emerged from four organizing themes: Accessing technology and services easily versus facing unpredictable problems, Communicating through digital technology versus interacting in person, Learning to use digital technology oneself versus asking for help, and Having mixed feelings versus reflecting on different meanings of digital technology. A thematic map is presented in . To ensure robustness, descriptive findings were accompanied by quotations. Participants in the text are numbered P1–P5.

Table 2. Thematic map.

Accessing technology and services easily versus facing unpredictable problems

Participants expressed that accessing technology improved their quality of life. As P3 stated, “It is a big thing [a computer] that helps you to live better and perform your daily activities more comfortably.” Having reported different preferences when it comes to accessing information, participants described their preferred devices after having a stroke. Some participants reported using a regular mobile phone because they could not use a smartphone. They would press too many buttons at once or could not press the right buttons to answer a call. On the other hand, participants associated a stationary computer with comfort. It was always in one place, at the right height so that they could sit properly by a table and search for what they need. If participants needed to see a bigger picture, a stationary computer with a bigger screen was the preferred alternative. They also reported preferring a regular mouse to a touchpad. Icons on the front screen made it easy to access services that they needed. However, when there was something interesting to watch, participants brought a tablet or laptop to bed.

Participants reported using digital technology to access services and information for various reasons and needs. Responses included using the computer for banking operations and paying bills, searching information about bus schedules, medicine or cooking recipes as well as checking food prices or ordering food from the grocery store. Participants could also access information from other people, through receiving and sending messages, making video calls, and social networking. In those instances, participants disclosed trusting the information they found. As P2 explained, “The computer is very thorough. There is a huge amount of information inside of it. Everything I search, everything I get answered, and well, the answers are accurate.”

However, it was pointed out that good attention was required to carefully read what was written, to understand what needed to be done next, and to make sure that only one button is pressed at a time. Participants reported unpredictable problems they faced when using digital technology in daily life. For example, P3 mentioned that computer programmes in English limited their use of digital technology, “I have an English programme. This is the thing that computer language is English and there are a lot of things I cannot do because of the language barrier.” It was suggested that if the programmes were in Estonian, older people could succeed to use a computer as well. Another problem was accessing websites through the computer. It was revealed that a webpage would sometimes disappear, and one needed to search again. Sometimes, websites would be updated between visits, causing problems to use them. Participants expressed awareness that a website could change over time, but they still expected it to work the way it used to, only to realize much later that it does not work the same way anymore. They reported wasting as much as half a day because they could not determine whether it will work or not. Other participants admitted that computer was a complicated machine.

Participants expressed positive experiences in accessing health information online. Participants reported searching mainly for exercises, managing their sick leaves, and tracking their health status. However, some participants reported problems when trying to use electronic prescriptions online. Nonetheless, an opinion was that healthcare should be computerized completely since it would be useful for society. According to P2, “…if everything is written in black on white and explained how to use it, then the number of fools who are damaging their health will decrease too.”

Communicating through digital technology versus interacting in person

Different views towards communication through digital technology or in person were expressed by the participants after stroke. On one hand, a strong reluctance to interact with people was expressed, and on the other hand, a desire to interact with others was also revealed. Some participants accepted communication through digital technology while some preferred face-to-face conversations. Participants reported a dislike to send SMS (short message service); they preferred “real” talk with a friend: “It is easier to talk, you can ask, not communicate with a machine that tells you something” (P3). Video calls were revealed as a popular way of communication. Majority found using video calls important to connect with grandchildren or friends: “I also have Internet and Wi-Fi and everything else. I would like to keep in touch with all my friends and be active.” (P5)

Opposing views were expressed about communication through digital technology for health. Participants admitted that meeting a family doctor in person was more convenient than through computer. Others opined that communicating with a therapist or a family doctor through computer was commonplace. As P5 described:

Yes, it could be completely normal communication with a family doctor, or let’s say if you need to get some information about something, you are either talking on the phone or talking through video.

Even though none of the participants had experience with telerehabilitation services, different views were captured. Some participants revealed that they did not see the vital need for telerehabilitation services and thus did not prefer as it. Contrarily, some participants expressed a positive attitude towards the implementation of telerehabilitation in stroke-related rehabilitation. As P4 stated, “Certainly, there would be an option [to use telerehabilitation], especially, the exercises that should be repeated over and over again from time to time.”

Learning to use digital technology oneself versus asking for help

Participants acknowledged schools which organized computer courses for older people. They disclosed having attended such courses some years ago before the stroke. However, they report that although information was already outdated, the knowledge they gained was still considered useful when using digital technology. They described that even after a stroke by remembering what was shown and trying to repeat the steps, they could learn on their own and understand digital technology more. As P3 described, “By learning yourself, you will remember all the mistakes… It [a computer] will not attack you.”

Despite that, all participants described how help from the family members such as a spouse, children or grandchildren continued to be necessary after stroke to complete their daily tasks. They expressed that being an active digital technology user required someone near at all times. For example, participants indicated banking operations as challenging and not possible without help. P5 explained:

Well, let me give you an example. When I am about to do a bank transfer, I have the given invoice in front of me. Did I pick the correct recipient? That is what they check. Is it the correct amount? Is it correct input?… And then there are those PIN codes, it needs to be checked if they are entered correctly. It needs to be supervised…

In relation to telerehabilitation services, participants mentioned using Estonian state portal eesti.ee for tracking medical records. Some participants did not show much interest in using telerehabilitation but indicated that if someone would show them how to use it, then they might consider such a service. Other participants expressed a positive attitude towards telerehabilitation, agreeing that guidance on how to use it should not be forgotten.

Well, it would probably work, but you should still get some instructions on how to get these things done, and yes, you definitely need some instructions, but I think you can do it. (P4)

Having mixed feelings versus reflecting on different meanings of digital technology

Mixed feelings were captured when participants described situations after stroke when they are motivated to use digital technology and situations when they experience negative feelings. Participants strongly expressed satisfaction in feeling independent. To exemplify, participants expressed that independently managing things on computer felt good. There was also feeling of confidence and usefulness when one became a source of information for one’s spouse.

Some participants expressed motivation to use digital technology. It was revealed that not knowing the full potential of digital technology makes using it more difficult. Nevertheless, participants reported managing the technology when it interested them, and when one knew how to operate a computer. However, asking for help was not always easy and did not bring positive emotions. One participant expressed feeling stupid if one could not do a simple task on a computer or asked for help to solve a simple problem by oneself. Nevertheless, all participants confirmed that digital technology was inseparable from their daily life. Participants admitted that they could not live without digital technology, although some claimed that it would be possible to live without a laptop but not without a smartphone. There was an idea that if digital technology disappeared, there would be chaos everywhere.

One participant divulged being addicted to digital technology, claiming it was very engaging. This participant further explained that the use of a tablet al.one was sufficient and that there was no reason to try another computer, even with pressure from family to use a laptop that was received as a gift. Another participant appeared uncertain what digital technology meant for oneself. This participant stated that it was important to use digital technology and stay informed by reading the news on the tablet every morning, yet contradicted oneself by stating that digital technology was not important in daily life and questioning why it was needed.

I do not want to use it [digital technology]. I do not think there is anything wrong with it, maybe it is just me who does not want to use it, I do not know… and then I say that I could live without it [digital technology] but, in fact, I cannot perhaps, maybe. (P1)

Some participants confirmed that digital technology was part of their daily routine. They described that after waking up, it was routine to turn on the computer and check the news or social media and read messages on the smartphone while still in bed. Moreover, they admitted how important digital technology was when one was bored. Video games could be played, or something could be read on a computer. P4 revealed, “It is a companion which helps time to pass faster.” Although all participants valued being informed either by checking the news or simply searching for information online, they also claimed that they still wanted to read printed newspapers and books or to watch the news on television.

Discussion

The study aimed to explore the experiences and meaning of digital technology in daily life by stroke survivors. The findings revealed various challenges and benefits in using digital technology. The findings also revealed the participants’ perceived meanings, personal preferences, and attitudes as well as strategies to use of digital technology in daily life.

Experiences and meaning of digital technology in daily life

Digital technology was experienced by stroke survivors as meaningful yet challenging to use. Technology use provided the opportunity to socialize and engage with others, and participants in this study valued the possibility to communicate with close ones through technology. As reported in another study [Citation27], stroke survivors often found it convenient to use digital technology to keep in touch with family and friends.

Ease of digital technology use was considered important because challenges or occupational tensions could arise. An occupational tension [Citation28] can be experienced by stroke survivors when they are unable to use digital technology the way they want due to access barriers and difficulties in performing an activity [Citation28]. Stroke survivors may feel overwhelmed by the changes brought about by the stroke, which can further lead to stress when using digital technology [Citation29]. Occupational tensions can affect stroke survivors’ willingness to interact with others in different ways, which was revealed by participants. It would be therefore important to understand stroke survivors’ roles, relationship with others, and how the stroke changed them.

Moreover, different feelings when using digital technology were experienced by stroke survivors, such as motivation or the lack of it, and feeling of independence or stupidity. People can experience a variety of emotions when interacting with technology and it is believed to have different effects on their behaviour. These emotions can be induced by the product’s quality, the meaning of the product, the interaction with the product, the facilitated function by the product, the impact on oneself and the effect of other people’s reactions to the product [Citation29].

Stroke survivors’ blind trust of digital technology was also illuminated in this study. Even though there is limited literature on stroke survivors, Hardré [Citation30] confirmed that people use digital technology with extensive trust and almost godlike power to control their daily lives and information needs. People often rush to use and implement digital technology in their daily life without really understanding its actual power and security [Citation30]. Trust is a complex, psychological construct that drives human behaviours [Citation31]. Even though trust itself is not an emotion, it is closely related to emotions as it arises and evokes emotions [Citation32]. Today, digital technology functions as a replacement for trusted human roles [Citation33] such as access to education and information, money management, communication, and health care [Citation34]. User trust in telemedicine portals for rehabilitation care is crucial [Citation35]. It is found that first meetings between the patient and healthcare professional should take place face-to-face, otherwise it could negatively affect patient’s trust [Citation36,Citation37]. Furthermore, patients look for several cues to determine their trust in a rehabilitation portal: perceived quality of the site, ease of use [Citation38], institution-based trust, secure Internet connection, and the option to change login details and personal data [Citation39].

Another concern was that participants often used digital technology and felt dependent on it. There is limited knowledge regarding stroke survivors’ overuse of and dependence on digital technology, particularly its consequences. Dependence, in the form of technology and internet addiction, has been reported in studies with young people as the main population [Citation40–42]. Research on older adults (some stroke survivors included) often focuses on the benefits of digital technology, such as increased socialization with family and friends, reduced social isolation and loneliness [Citation43], more entertainment possibilities, empowerment, and experience of control which in turn increases mental health and the quality of life [Citation44]. However, there are drawbacks to overuse of technology. Some researchers stressed that Internet use can be significantly associated with health issues, decreased time spent with friends and family, which can increase loneliness or social isolation, and decreased quality of life [Citation45–47].

Perspectives of application of digital technology to the implementation of telerehabilitation

Participants in this study did not have experience in telerehabilitation. However, findings revealed an openness to using digital technology in rehabilitation. It has been previously reported that stroke survivors who have used digital technology before the stroke tend to have positive attitudes towards new technologies [Citation29]. An individual’s intention to use new technology is explained in the technology acceptance model [Citation48,Citation49]. The technology acceptance model suggests that an individual’s intention to use technology can be predicted according to their perception of how useful the technology is, and whether it is easy to use [Citation49]. However, trust is a vital construct for predicting acceptance of technology in healthcare services [Citation50]. If the patient trusts the healthcare provider to fulfil his or her needs, it is more likely that the patient will view technology as being useful [Citation51]. In contrast, trust does not have significant effect on ease of use of technology in healthcare [Citation52].

One viewpoint to digitalize the entire healthcare system to reduce the number of people who lack knowledge about their health was also raised in this study. In this case, it is important to understand that while trust is the default attitude regarding health information, the patient must take responsibility for the information, evaluate the sources, and decide to what extent trust is justified [Citation53]. There is a need of someone to explain and discuss medical advice, to refer to the right expertise when more information is needed, and to be responsible for the correctness of the information and advice [Citation53]. The responsibility to guide the patient often falls in the hands of rehabilitation professionals, including occupational therapists, who are in contact with the patient. The importance of trust between the healthcare professional and patient can lead to patient’s commitment to therapy and facilitate open communication [Citation54]. Success in promoting patient participation in occupations partly relies on the quality of the patient-therapist relationship [Citation55,Citation56] which also promotes trust [Citation57].

Although the participants had no experience with telerehabilitation services, there was expressed interest in its implementation and an identified need for education before using it. Literature confirms that telerehabilitation requires preparation before service can be implemented [Citation58]. Studies analyzing stroke survivors found that supply of necessary tools, equipment, or handouts in advance and/or training on how to set up the equipment are required [Citation59]. In addition, in-person sessions are conducted either in healthcare settings or in stroke survivor’s homes for set up and training on the use of equipment [Citation60,Citation61]. To start using telerehabilitation services, stroke survivors need to experience positive emotions when learning from the instructor, as well as from other stroke survivors [Citation62]. Consequently, the need for further learning is recognized to maintain further explanations over a period of familiarization with the telerehabilitation programme [Citation63].

Implications for practice

As rehabilitation centres develop and implement new ways of therapy provision such as telerehabilitation to shorten patient waiting lists [Citation64], this study offers insights for occupational therapists and other healthcare professionals to better understand stroke survivors’ challenges when using digital technology. To be better prepared at implementing telerehabilitation services, occupational therapists and other healthcare professionals have to be aware of the potential barriers related to technology use that stroke survivors can face in their participation and engagement in everyday life. It is important to make recommendations for modifications and adaptations to ensure efficient use of digital technology [Citation28]. With the knowledge gained, healthcare professionals can help stroke survivors to develop skills to use digital technology and create health-promoting habits and routines [Citation64]. For future research and development work, it would be important for healthcare professionals to be clear about their respective roles in telerehabilitation services. For occupational therapists, it would be important to be aware of stroke survivors’ preferences and various occupations in which they use digital technology [Citation28,Citation65]. Occupational therapists should then aim to facilitate participation and engagement in those occupations and tailor the supports provided depending on individual needs [Citation65]. It would be relevant to involve family members to support their loved ones’ technology use after a stroke in installing and updating the operating system and useable applications in their native language, as well as changing settings on the devices to fit the stroke survivors’ needs and preferences [Citation65]. With supportive technological and social environments, stroke survivors will have more opportunities to participate in their rehabilitation at home and engage in their daily activities.

Methodological considerations

This study would have benefitted more with wider inclusion criteria such as stroke survivors from other rehabilitation centres and/or patients with other neurological diagnoses to increase the number of participants. Even though the findings revealed repeated views, the possibility of follow-up interviews would have also helped to validate preliminary understandings [Citation66]. Member-checking is another strategy which would have helped to establish credibility by involving participants in the data analysis process – giving them opportunities to read, comment, and contribute to the findings [Citation67]. It is therefore recommended to conduct future studies with a larger sample size and additional data collection meetings.

This study would also have benefitted from participants with experience of telerehabilitation. Studies focusing on stroke survivors’ experiences using telerehabilitation services would provide a better picture of their perceptions using digital technology for health-related concerns. There is a need for further research to strengthen the findings and support occupational therapists and other health professionals in the implementation of stroke-related telerehabilitation.

Conclusion

This study described the diversity of stroke survivors’ experiences and meaning of digital technology in daily life. The findings revealed that participants’ different experiences influenced their perceived meaning of digital technology in daily life and the interest to use digital technology. Even without first-hand experience, there was expressed interest to participate in telerehabilitation services. The implementation of telerehabilitation can increase the availability and effectiveness of rehabilitation services for stroke survivors. However, it is important to keep in mind that involving stroke survivors in designing telerehabilitation services can increase their trust and willingness to participate in telerehabilitation.

Acknowledgements

The authors wish to acknowledge Kadri Englas, who supported the data collection at HNRC; Siiri Siimenson, for conducting interviews and help with transcriptions; and Mari-Liis ÖÖpik-Loks and Kadi Neemre for their help with translations. We wish to thank all the participants who agreed to participate in the study. Their contribution is immeasurable.

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.

References

  • Bergström A, von Koch L, Andersson M, et al. Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset. J Rehabil Med. 2015;47(6):508–515.
  • Ekstam L, Johansson U, Guidetti S, et al. The combined perceptions of people with stroke and their carers regarding rehabilitation needs 1 year after stroke: a mixed methods study. BMJ Open. 2015;5(2):e006784–e006784.
  • Saywell N, Taylor D. Focus group insights assist trial design for stroke telerehabilitation: a qualitative study. Physiother Theory Pract. 2015;31(3):160–165.
  • Fischl C, Asaba E, Nilsson I. Exploring potential in participation mediated by digital technology among older adults. J Occup Sci. 2017;24(3):314–326.
  • Gustavsson M, Ytterberg C, Marwaa MN, et al. Experiences of using information and communication technology within the first year after stroke – a grounded theory study. Disabil Rehabil. 2018;40(5):561–568.
  • Kamwesiga JT, Tham K, Guidetti S. Experiences of using mobile phone in everyday life among persons with stroke and their families in Uganda – a qualitative study. Disabil Rehabil. 2017;39(5):438–449.
  • White J, Janssen H, Jordan L, et al. Tablet technology during stroke recovery: a survivor’s perspective. Disabil Rehabil. 2015;37(13):1186–1192.
  • Marwaa MN, Ytterberg C, Guidetti S. Significant others’ perspectives on person-centered information and communication technology in stroke rehabilitation – a grounded theory study. Disabil Rehabil. 2020;42(15):2115–2122.
  • Hermann VH, Herzog M, Jordan R, et al. Telerehabilitation ad electrical stimulation: an occupation-based, client-centered stroke intervention. Am J Occup Ther. 2010;64(1):73–81.
  • Fiske A, Buyx A, Prainsack B. The double-edged sword of digital self-care: physician perspectives from Northern Germany. Soc Sci Med. 2020;260:113174.
  • Lucivero F. Lessons about so-called “difficult” patients from the UK controversy over patient access to electronic health records. AMA J Ethics. 2017;19:374–380.
  • Kizony R, Zeilig G, Dudkiewicz I, et al. Tablet Apps and dexterity: comparison between 3 age groups and proof of concept for stroke rehabilitation. J Neurol Phys Ther. 2016;40(1):31–39.
  • Brouns B, Meesters JJL, Wentink MM, et al. Why the uptake of eRehabilitation programs in stroke care is so difficult – a focus group study in The Netherlands. Implement Sci. 2018;13(1):133–133.
  • Bertilsson AS, Ranner M, von KL, et al. A client-centred ADL intervention: three-month follow-up of a randomized controlled trial. Scand J Occup Ther. 2014;21(5):377–391.
  • Van den Berg M, Crotty M, Liu E, et al. Early supported discharge by caregiver-mediated exercises and e-health support after stroke: a proof-of-concept trial. Stroke. 2016;47(7):1885–1892.
  • Fischl C, Lindelöf N, Lindgren H, et al. Older adults’ perceptions of contexts surrounding their social participation in a digitalized society–an exploration in rural communities in Northern Sweden. Eur J Ageing. 2020;17(3):281–290.
  • Eurostat. Individuals who have basic or above basic overall digital skills by sex; 2021. [cited 2021 Oct 30] Available from: https://data.europa.eu/data/datasets/ynapscpsv4vbkygqwrva?locale=en.
  • Moustakas C. Phenomenological research methods. Thousand Oaks, California: SAGE Publishing; 1994.
  • Seidman IE. Interviewing as qualitative research: a guide to researchers in education and the social sciences. 3rd ed. New York and London: Columbia University, Teachers College Press; 2006.
  • Morse JM. Drowning in data. Qual Health Res. 1993;3(3):267–269.
  • Behi R, Nolan M. Ethical issues in research. Br J Nurs. 1995;4(12):712–716.
  • Lee M, Schuele CM. Demographics. In: Salkind NJ, editor. Encyclopedia of research design. Thousand Oaks, CA: SAGE Publications; 2010.
  • Moran D. Introduction to phenomenology. London, England: Routledge; 2000.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
  • Miles MB, Huberman AM. Qualitative data analysis: an expanded sourcebook. Thousand Oaks, California: SAGE Publishing; 1994.
  • Polit DF, Hungler BP. Nursing research: principles and methods. 6th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 1999.
  • Lam MY, Tatla SK, Lohse KR, et al. Perceptions of technology and its use for therapeutic application for individuals with hemiparesis: findings from adult and pediatric focus groups. JMIR Rehabil Assist Technol. 2015;2(1):e1.
  • Dorey B, Reid D, Chiu T. Stroke survivors’ experiences of computer use at home. Technol Disabil. 2007;19:179–188.
  • Nasr N, Leon B, Mountain G, et al. The experience of living with stroke and using technology: opportunities to engage and co-design with end users. Disabil Rehabil Assist Technol. 2016;11(8):653–660.
  • Hardré PL. When, how, and why do we trust technology too much? In: Tettegah SY, Espelage DL, editors. Emotions, technology, and behaviors. Elsevier Inc; 2016. p. 85–106.
  • Kramer RM, Carnavale PJ. Close relationships. In: Hendrick C, editor. Trust in close relationships. London: SAGE Publishing; 2001. p. 431–450.
  • Simpson JA. Psychological foundations of trust. Curr Dir Psychol Sci. 2007;16(5):264–268.
  • Turkle S. Alone together: why we expect more from technology and less from each other. New York: Basic Books; 2011.
  • Xu J, Kim L, Deitermann A, et al. How different types of users develop trust in technology: a qualitative analysis of the antecedents of active and passive user trust in a shared technology. Appl Ergon. 2014;45:1495–1503.
  • Van Velsen L, Wildevuur S, Flierman I, et al. Trust in telemedicine portals for rehabilitation care: an exploratory focus group study with patients and healthcare professionals. BMC Med Inform Decis Mak. 2016;16(1):11.
  • Riper H, Spek V, Boon B, et al. Effectiveness of E-self-help interventions for curbing adult problem drinking: a meta-analysis. J Med Internet Res. 2011;13(2):e42.
  • Fledderus M, Bohlmeijer ET, Pieterse ME, et al. Acceptance and commitment therapy as guided self-help for psychological distress and positive mental health: a randomized controlled trial. Psychol Med. 2012;42(3):485–495.
  • Koufaris M, Hampton-Sosa W. The development of initial trust in an online company by new customers. Inf Manag. 2004;41(3):377–397.
  • Seckler M, Heinz S, Forde S, et al. Trust and distrust on the web: user experiences and website characteristics. Comput Hum Behav. 2015;45:39–50.
  • Haug S, Castro RP, Kwon M, et al. Smartphone use and smartphone addiction among young people in Switzerland. J Behav Addict. 2015;4(4):299–307.
  • Ong SH, Tan YR. Internet addiction in young people. Ann Acad Med Singapore. 2014;43(7):378–382.
  • Remondi C, Compare A, Tasca GA, et al. Insecure Attachment and technology addiction among young adults: the mediating role of impulsivity, alexithymia, and general psychological distress. Cyberpsychol Behav Soc Netw. 2020;23(11):761–767.
  • Erhag HF, Ahlner F, Rydberg ST, et al. Internet use and self-rated health among Swedish 70-year-olds: a cross-sectional study. BMC Geriatr. 2019;19(1):365.
  • Khalaila R, Vitman-Schorr A. Internet use, social networks, loneliness, and quality of life among adults aged 50 and older: mediating and moderating effects. Qual Life Res. 2018;27(2):479–489.
  • Coget JF, Yamauchi Y, Suman M. The internet, social networks and loneliness. Soc. 2002;1(1):80–201.
  • Kraut R, Patterson M, Lundmark V, et al. Internet paradox: a social technology that reduces social involvement and psychological well-being? Am Psychol. 1998;53(9):1017–1031.
  • M’hiri K, Costanza A, Khazaal Y, et al. Problematic internet use in older adults: a critical review of the literature. J Addict Res Ther. 2015;6(4):253.
  • Venkatesh V, Bala H. Technology acceptance model 3 and a research agenda on interventions. J Decis Sci Inst. 2008;39:273–315.
  • Davis FD, Bagozzi RP, Warshaw PR. User acceptance of computer technology: a comparison of two theoretical models. Manag Sci. 1989;35(8):982–1003.
  • Ba S, Pavlou P. Evidence of the effect of trust building technology in electronic market: price premium and buyer behaviour. Mis Q. 2002;26(3):243–268.
  • Lalseng EJ, Andreassen TW. Electronic healthcare: a study of people’s readiness and attitude toward performing self-diagnosis. Int S Serv Ind Manag. 2007;18(4):394–417.
  • Honein-AbouHaider GN, Antoun J, Badr K, et al. User’s acceptance of electronic patient portals in Lebanon. BMC Med Inform Decis Mak. 2020;20(1):31.
  • Mayskja BK, Steinsbekk KS. Personalized medicine, digital technology and trust: a kantian account. Med Health Care Philos. 2020;23:577–587.
  • Copley J, Turpin M, Brosnan J, et al. Understanding and negotiating: reasoning processes used by an occupational therapist to individualize intervention decisions for people with upper limb hypertonicity. Disabil Rehabil. 2008;30(19):1486–1498.
  • Allison H, Strong J. Verbal strategies used by occupational therapists in direct client encounters. OTJR. 1994;14(2):112–129.
  • Eklund M, Hallberg IR. Psychiatric occupational therapists’ verbal interaction with their clients. Occup Ther Int. 2001;8(1):1–16.
  • Taylor RR. The intentional relationship. Occupational therapy and the use of self. Philadelphia: FA Davis; 2008.
  • Kn GH, Fong KN. Effects of telerehabilitation in occupational therapy practice: a systematic review. Hong Kong J Occup Ther. 2019;32(1):3–21.
  • Boehm N, Muehlberg H, Stube JE. Managing poststroke fatigue using telehealth: a case report. Am J Occup Ther. 2015;96(6):1–7.
  • Lawson S, Tang Z, Feng J. Supporting stroke motor recovery through a mobile application: a pilot study. Am J Occup Ther. 2017;71(3):1–5.
  • Linder SM, Rosenfeldt AB, Bay RC, et al. Improving quality of life and depression after stroke through telerehabilitation. Am J Occup Ther. 2015;69(2):6902290020p1–690229002010.
  • Yang CL, Waterson S, Eng JJ. Implementation and evaluation of the virtual graded repetitive arm supplementary program (GRASP) for individuals with stroke during the COVID-19 pandemic and Beyond. Phys Ther Rehabil Sci. 2021;101(6):1–9.
  • Mountain G, Wilson S, Eccleston C, et al. Developing and testing a telerehabilitation system for people following stroke: issues of usability. J Eng Des. 2010;21(2):223–236.
  • Cason J. Telehealth: a rapidly developing service delivery model for occupational therapy. Int J Telerehabilitation. 2014;6(1):29–35.
  • Fischl C, Blusi M, Lindgren H, et al. Tailoring to support digital technology-mediated occupational engagement for older adults - a multiple case study. Scand J Occup Ther. 2020;27(8):577–590.
  • Frechette J, Bitzas V, Aubry M, et al. Capturing Lived experience: methodological considerations for interpretive phenomenological inquiry. Int J Qual Methods. 2020;19:1–12.
  • Curtin M, Fossey E. Appraising the trustworthiness of qualitative studies: guidelines for occupational therapists. Aust Occup Ther J. 2007;54(2):88–94.