1 STROKE SURVIVORS EXPERIENCES OF COMPUTER USE AT HOME Brenda

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					             STROKE SURVIVORS’ EXPERIENCES OF COMPUTER USE AT HOME

                                        Brenda Dorey, MSc(OT)1

                                           Denise Reid, PhD1

                                     Teresa Chiu, PhD Candidate1,2,3
1
    Department of Occupational Science and Occupational Therapy, University of Toronto; 2COTA Health;
             3
               Department of Health Policy, Management, & Evaluation, University of Toronto

  The Heart and Stroke Foundation of Canada           does detail how a 54-year-old man with no
approximates that 300 000 stroke survivors are        previous computer experience was taught to use a
currently living in Canada [1]. An emerging trend     computer 3 years after suffering a stroke. He used
in healthcare is to promote early discharge from      the computer to type stories of his experiences
hospital once the stroke survivor is medically        and stated that utilizing the computer led to
stable [2]. Following discharge, an increasing        improvement in other areas of his life, including
number of these stroke survivors are returning to     increased social participation [8. Karavidas, Lim
their home environment [1]. Once at home, stroke      and Katsikas [9] conducted a study which
survivors often experience a decrease in              examined the effects of computer use on older
participation in occupations, particularly leisure    adults in relation to life satisfaction and self-
occupations [3,4]. In turn, this decrease in          efficacy. Based on the results, Karavidas et al [9]
participation can lead to a decreased level of life   suggested that computers enhanced older adults’
satisfaction [5].                                     abilities to maintain social networks and maintain
         A growing leisure, and often productive,     their independence, thus improving life
occupation within the home is the use of a            satisfaction.
computer, whether for gaming, word processing                  Other studies have explored the use of
or surfing the internet [6]. Currently over half of   computers as a therapeutic tool through either
Canadian households have at least one member          telerehabilitation or virtual reality post-stroke [10-
who regularly uses the internet, most often at        12]. Piron et al [11] evaluated a telerehabilitation
home [7]. Given the prevalence of computer use        system for motor arm therapy in individuals after
in the Canadian population, computer use is likely    a stroke. The study involved a personal computer
an important occupation that many stroke              equipped with videoconferencing capabilities to
survivors would like to resume once they return       be placed in the participants’ homes and
home. To date only a few research studies have        participants were provided with training to use the
examined the personal use of computers at home        system. Piron et al [11] found that although the
by stroke survivors, and no studies were found        therapists were not present in the participants’
that described the experiences of stroke survivors    physical environment, motor learning was still
with computers, including barriers and potential      possible and was not hindered by the lack of a
facilitating technology that may be required.         physical presence. Reinkensmeyer et al [12] also
                  Literature Review                   evaluated a similar telerehabilitation system as a
         In the reviewed literature on stroke         method of service delivery and found that
survivors and computers, only one case report         improvements in motor arm function were
explicitly discussed the use of a personal home       achieved. The results of these two studies suggest
computer with a stroke survivor. While the study      that stroke survivors are able to use computer
by Batt and Lounsbury [8] is slightly dated, it


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technology given the proper adaptations and             and if any assistive technology would be
training as required.                                   beneficial or was already in place. Computer use
        Another body of literature discussed the        was defined to include any activities the
current availability of assistive technology to         participants carried out on the computer.
enable personal computer use at home amongst                The central question under investigation was:
individuals with disabilities. With the advancing       What is the experience of stroke survivors’ use of
technology, more and more people living with            the computer at home? The objectives of the
disabilities are able to regain independence and        inquiry were as follows:
employment through the use of assistive                     1. To examine how stroke survivors use
technology. Examples of this technology include                 personal computers at home in their daily
alternative keyboards or adapted mouse systems,                 life.
which make computers accessible to individuals              2. To determine whether patterns of
with disabilities [13,14]. According to Rochette,               computer use post-stroke differ from pre-
Desrosiers and Noreau [15], individuals who rely                stroke computer use.
on assistive technology consider assistive devices          3. To determine the unique needs,
to be a major factor in facilitating participation in           modifications or assistive technology
a variety of activities. The proper assistive                   required regarding personal computer use
technology can promote independence and allow                   by stroke survivors at home.
for greater access to mainstream society [13].                  The goal of this study was to initiate
There are a wide variety of adaptations and             preliminary guidelines for occupational therapists
assistive technology available to facilitate            working with stroke survivors to provide
accessing computers dependent upon the                  recommendations for computer use and to
particular impairments a person may develop after       develop a basis for recommendations for future
a stroke.                                               research in this area.
        To date, no studies were found that                              Research Methods
specifically examined the perceptions of personal
computer use among stroke survivors at home and         Participants
whether assistive technology was in place. As                   Participants were recruited from stroke
computer use is on the rise, it is reasonable to        recovery groups in the Greater Toronto Area via
believe that many stroke survivors would consider       distribution of flyers containing a brief
computer use to be a meaningful occupation.             explanation of the study. Inclusion criteria
Occupational therapists can enable stroke               required participants to be over the age of 20,
survivors to regain meaningful occupations and, in      speak and understand English and use a computer
turn, improve their quality of life by having an        at home. Participants were excluded if significant
understanding of how and why stroke survivors           cognitive or language barriers were present that
use the computer. This information will help to         would hinder participation in the interview
determine the proper assistive technology and/or        process. Purposive sampling was employed
modifications required for stroke survivors to use      during participant recruitment to ensure variation
the computer.                                           in age, years post-stroke and living situation.
           Research Objectives/Questions                Data Collection
        The purpose of this grounded theory study               The study involved in-depth interviews
was to describe the experiences of stroke               with participants in their home environments and
survivors over the age of 20 who use personal           observation of the participants using the computer
computers at home. The focus was on how the             in their home. The interview required
stroke survivors were experiencing using the            approximately an hour to complete and the
computer, what they were using the computer for         observation portion occupied about 15 minutes of



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the home visit. Interviews were tape recorded for      determine codes and themes [18]. Preliminary
further analysis. Photographs of the computer set-     categories were determined from the initial
ups were taken and accompanied by hand drawn           interviews and incorporated into future interview
diagrams of the computer workstation.                  questions to maintain a process of constant
         Once the consent form was discussed and       comparison throughout the extent of the research
signed, the interview session began with a             study. N’VIVO [19] software was utilized to
demographics questionnaire to elicit background        manage the data in terms of storing and retrieving
information on participants. The demographics          codes.
questionnaire consisted of 17 questions related to              Trustworthiness is important in qualitative
living situation, details of the individual’s stroke   research because investigators need to ensure that
and resulting impairments, past education, prior       the gathered data accurately reflects the observed
employment and information on past and current         reality [18]. According to Creswell [17 and Depoy
computer use. Upon completion of the                   and Gitlin [18] there are several techniques to
demographics questionnaire, an interview guide         ensure trustworthiness. For the current study, a
was employed to direct the interview and gain          form of triangulation was employed, whereby the
insight into the participant’s experience of using     information collected during the interview process
the computer. Probing questions were utilized to       was checked with the observations noted during
further explore the stroke survivors’ answers in       the participants’ computer use to ensure accuracy
hopes of providing more depth to the responses.        of the information the participants provided. An
The first author conducted all interviews.             ongoing field journal, including feelings, reactions
Following the interview, participants were asked       and other relevant personal reflections was
to demonstrate a task commonly conducted on the        maintained throughout the course of the research
computer such as checking email or navigating a        study. The field journal was used to aid the
website. Participants were also asked to               investigator in reflecting on how personal biases
demonstrate their typing abilities. Observations       may have influenced the participants or the
were recorded on an observation guide. The             findings [17].
observation guide consisted of a chart detailing
components of computer use, such as tracking the       Findings
mouse on the screen and hitting the appropriate                A total of six participants, who provided
buttons, where comments and a rating (No               consent to participate in the study, were
Difficulty, Some Difficulty and Great Difficulty)      interviewed in their homes. There were four males
could also be recorded.                                and 2 females (mean age = 56.83, range 40 – 80).
Data Analysis                                          The range of years post stroke varied three years
         Every interview was transcribed verbatim      to 13 years with two participants at three years;
by the first author and the accuracy of the            two participants at seven years, and two
transcription checked. The transcriptions were         participants at 13 years. Participants explained
reviewed by the second author for verification.        that they used computers everyday for an average
The first step in analyzing data, based on the         of five hours for productive occupations, such as
grounded theory approach, is to identify codes in      online banking and grocery shopping, and for
the data. This process is called open coding           leisure occupations like reading and playing
[17,18]. The next step in data analysis is termed      games. The information gained from the
axial coding, which involves piecing the codes         interviews revealed the importance of computers
together [17,18]. Selective coding is then             in participants’ daily lives. Based on the data
completed where the codes are connected together       collected, two main themes emerged. The first
to tell a story [17,18]. The data were constantly      theme, ‘Connected Through Doing’, encompasses
compared to previous information learned to            the participants’ feelings of connectedness



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experienced by using computers. ‘Occupational          the web for research, like every now and then
Tensions and Strategies’, the second overarching       something comes up and I want to find out more
theme, encapsulates the feelings of frustration        about it [stroke],” one participant stated. Another
experienced by participants when barriers to           study participant demonstrated during the
computer use existed, as well as the suggestions       observation phase how he would often search his
participants made to help future stroke survivors      last name in order to learn more about the history
use computers.                                         and genealogy of his name. Locating different
         Participants expressed that they felt         forms of research, beyond solely stroke research,
connected through the use of computers. This           was also a task stroke survivors found the
theme can further be divided into two sub-themes.      computer and internet could be useful for. One
         Participants described a feeling of           stroke survivor stated he often looked up medical
connectedness as a result of the reasons they used     terms his doctor used but that he was not familiar
the computer. That is, the ‘what’ of computer use      with, “Any problem I have with, something
involved a wide range of tasks, such as email,         bothers me, I quickly go to one of those, a good
reading online newspapers and playing games,           hospital down in the States usually and punch up,
among other tasks. Participants highlighted the        ‘what do they mean by that’ or ‘what does my
importance of the internet in enhancing their sense    doctor mean by this?'”
of connectedness in the activities conducted on the             Another participant described how she
computer. All participants stated they used email      would conduct research before her and her spouse
and many participants explained that email had         went on vacation, “My husband and I will go on
become a main form of communication with               holiday and I will research to see if there is
friends and family. Staying in touch with              anything interesting in the area. Try to plan the
important people is a way the stroke survivors in      trip.”
this study felt connected to others. One participant            Lastly, the internet was frequently cited as
stated, “People you don’t see often you can just       a method for utilizing the public transportation
email them and they will pick it up eventually. So,    system for individuals with disabilities.
it’s a great communication tool.”                      Participants described being able to book the
         For some participants, reading a              services online and stay connected by checking
newspaper became difficult after their stroke,         the schedule, as one participant explained, “You
whether due to vision impairments or motor             can start going on the website… for confirmation
impairments that hindered their ability to hold the    of your WheelTrans and stuff like that.”
paper. For these individuals, being able to access              Games were a form of entertainment that
newspapers online gave them the ability to             could be completed on the computer. This
continue to remain up-to-date on current events        facilitated a sense of connectedness in relation to
and to maintain a previously enjoyed activity. One     their recovery process through an active role in
participant explained his reasoning for accessing      playing games. The participants explained they
the newspaper online, “I used to get the paper         often felt the games were therapeutic, “I also play
delivered everyday but I found it a pain to read…I     games. I think, in a strange way, I think it is
can’t just sit there and hold the paper like I used    therapy. Recreation, but it is also therapy. I play
to.” Thus, reading the newspaper online was a          these games and they make you look around.”
way for participants to feel connected with current    Participants described the feeling of
events and to stay informed.                           connectedness in terms of the benefits
         Another task completed on the computer        experienced by using the computer, which
via the internet was looking up information of         demonstrated a sort of ‘life line’ experience that
interest. For example, participants explained          participants had about their computer.
looking up information regarding strokes. “I use



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Occupational Tensions and Strategies                           pilot study. Activities, Adaptation, &
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