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Development of The Kalmer Relaxation Intervention Co Design With Stroke Survivors With Aphasia
Development of The Kalmer Relaxation Intervention Co Design With Stroke Survivors With Aphasia
To cite this article: Rebecca El-Helou, Brooke Ryan & Ian Kneebone (2022): Development of
the “Kalmer” relaxation intervention: co-design with stroke survivors with aphasia, Disability and
Rehabilitation, DOI: 10.1080/09638288.2022.2069294
Article views: 5
ORIGINAL ARTICLE
Introduction In Australia, the setting for this study, data from the Stroke
Foundation Rehabilitation Audits indicates that stroke survivors
Worldwide stroke effects over 13 million people annually [1].
Stroke survivors can experience physical and cognitive disabilities are not receiving adequate psychological care to address their
that vary in their nature and severity [2–5]. One major conse problematic mood impairments [14]. Specifically, 31% of stroke
quence of stroke can be the development of mood disturbances services do not have access to psychologists for appropriate
[5–7]. Anxiety is common after stroke, with a point prevalence of advice and treatment planning [14]. This number is likely to be
25% [6,7] and it is associated with poor outcomes, such as higher for stroke survivors with aphasia who are often seen as
reduced quality of life, social relationships, and worse rehabilita not appropriate for psychological therapy [15]. Audit data from
tion outcomes [6,7]. Approximately, 30–34% of stroke survivors the United Kingdom [16] and New Zealand also report limited
will also be diagnosed with a significant language-based commu access to psychology services across rehabilitation wards [17,18].
nication disability called aphasia [8]. People with aphasia com Systematic reviews have concluded that there is a dearth of
monly experience impairments in reading, writing, speaking, and evidence as to effective and appropriate psychological treatments
listening, with the nature and severity of these deficits varying for anxiety in stroke survivors [19–22]. Further, individuals with
across individuals [9]. Given the importance of communication in communication deficits, such as aphasia are typically excluded
one’s social, occupational, and daily functioning, it is unsurprising from treatment development and evaluation studies [15,21].
that people with aphasia are at a higher risk of developing Research has also highlighted that multi-disciplinary stroke clini
depression and anxiety and experience worse rehabilitation out cians have poor self-efficacy when providing psychological inter
comes than survivors without stroke-related impair ventions, such as counselling for people with aphasia [23–26].
ments [8,10–13]. Hence, research is needed to understand the best way this
CONTACT Rebecca El-Helou rebecca.el-helou@student.uts.edu.au Discipline of Clinical Psychology, Graduate School of Health, University of Technology
Sydney, Broadway, NSW, Australia
Supplemental data for this article can be accessed online at https://doi.org/10.1080/09638288.2022.2069294
� 2022 Informa UK Limited, trading as Taylor & Francis Group
2 R. EL-HELOU ET AL.
population can be provided with psychological treatment that ensuring end-users, in this case, people with aphasia and stroke,
considers their communication needs. are consulted in the process of developing interventions [45].
In the general population, relaxation has been shown to be an Co-design is also known as the participatory design is one
efficacious psychological treatment that can both reduce anxiety method of engaging stakeholders in the process of intervention
and depressive symptoms [27,28]. The research suggests that development [46,47]. This method is a process whereby consum
relaxation also benefits older persons as well as individuals suffer ers, researchers, and developers, collaboratively develop and
ing from chronic physical health issues [27], patient characteristics innovate products and or services to improve end users’ out
common in stroke survivors. Relaxation classes are also viewed comes and satisfaction [41,44,47]. Specifically, co-design has pro
positively and deemed worth recommending to peers by those ven to successfully promote uptake of health-based interventions
with stroke [29,30]. Further, mainstream talk-based therapies gen [48–51]. According to reviews, studies using co-design vary widely
erally aren’t communicatively accessible for stroke survivors with in their approaches [46,52]. Whilst there are differences across the
aphasia [15,31,32] thus a specifically designed tailored relaxation methods of co-design, the majority of studies utilise an iterative
intervention may prove to be a suitable treatment approach whereby stakeholders are continuously consulted
option [15,31,33]. throughout the stages of intervention development through focus
Technology-based relaxation interventions that can be utilised groups, interviews, or surveys [46]. As a first step to developing a
at home may be particularly useful for stroke survivors because of low-cost, and inclusive, relaxation intervention, this study involved
their location and/or physical disability [30,33–35]. Such treat end-users in the development of a relaxation intervention
ments may also be of benefit to stroke survivors during their hos through qualitative enquiry, primarily using focus groups.
pitalisation given psychology services are often limited in most
stroke wards [14]. Supporting the potential for benefit, research Aims
has shown that stroke survivors experience high levels of satisfac
The overarching aim of this study was to co-design a technology-
tion and treatment compliance with technology-based interven
based relaxation intervention for stroke survivors with aphasia.
tions and in particular people with aphasia can access and use
The further aims of this study were to qualitatively investigate the
such technologies [35,36]. One study piloting an at-home technol
acceptability and feasibility of the intervention for people
ogy-based relaxation intervention for stroke survivors not only
with aphasia.
identified reduced anxiety symptoms but demonstrated a greater
reduction in symptoms compared to no treatment controls [37].
Notably, the benefits from this intervention were still present Methods
12 months later [38]. Furthermore, there is evidence to suggest Research design
that this type of relaxation intervention might be beneficial for
those with mild aphasia [39]. However, the effect of such inter This Qualitative study utilised a general qualitative inquiry
ventions on stroke survivors with more severe communication approach meaning the study was not constrained to a particular
deficits remains unknown. methodology to allow for greater flexibility in data collection pro
Most recently, a study in the United Kingdom trialled a brief cedures. Thematic Analysis can be used as a stand-alone method
mindfulness DVD intervention for stroke patients including those as outlined in the literature [53,54].
with mild to moderate aphasia [33]. The study found that the
Context
mindfulness relaxation techniques used in the program were per
This paper will report on the impact of COVID-19 on this work in
ceived as acceptable, feasible, and helpful for managing anxiety
accordance with the CONSERVE CONSORT guidelines (see
[33]. However, it is important to note that this study focused on
Supplementary File 2) [55]. Recruitment for this study commenced
both stroke survivors with and without aphasia, and those with
in September 2020 and data collection ended in April 2021.
aphasia only made up 38% of the study sample [33]. Furthermore,
During this time there were COVID-19 restrictions on travel and
the severity of the participants’ aphasia was not identified using
in-person data collection with groups could have potentially been
formal measures [33]. The study also acknowledged that not all
unsafe. Thus, the authors of this paper decided to move all
stroke survivors will have access to DVD players and proposed
recruitment and data collection methods online as a mitigating
that future studies seek to develop other technology-based inter strategy in June 2020 and ethical approval was sought.
ventions, such as online videos which are more accessible to peo
ple with stroke [33,40]. The current study seeks to extend this Ethical considerations
promising preliminary research by obtaining the input of stroke This project along with the COVID-19 modifications was approved
survivors with aphasia to inform the development of an access by the relevant Human Research Ethics Committees of the
ible, technology-based, relaxation intervention that is suitable for University of Technology Sydney (HREC REF NO. ETH20-5387).
survivors with severe stroke-related communication impair Before their participation, informed consent was obtained from
ments [33]. each participant using ZoomTM [56] by a psychologist trained in
A significant problem that researchers face when developing Supportive Communication Strategies for people with aphasia
and evaluating health interventions is poor user engagement, [57]. Participants were provided tailored information sheets that
treatment compliance, and higher attrition rates than expected were formatted to principles that aimed to enhance communica
[41,42]. Concerningly, 35% of Speech and Language Pathologists tive accessibility for people with aphasia (e.g., white space, bold
have reported that people with aphasia are declining professional ing, large font, and pictures). During the consent process, the
services to manage their mood concerns [24]. To overcome this registered psychologist shared the information sheet on their
issue, particularly in this group, interventions must be aligned computer screen and verbally read and paraphrased (where
with patients’ needs and preferences [41–44]. Thus, the Medical required) the information sheets to the participations. Participants
Research Council framework for developing complex interventions were given multiple opportunities to ask the research team ques
advises that knowledge exchange should be addressed by tions before consenting. Verification techniques (asking yes/no
DEVELOPMENT OF “KALMER” RELAXATION INTERVENTION 3
proposed intervention and reached a consensus on the accept (REH) acknowledges that her education and training in psych
ability of the final name and logo. After receiving initial feedback ology may have biased her interpretation of the data. Specifically,
from the first focus group, requested changes were made to the REH was aware of the nature and severity of mood problems after
sample materials, and scripts were re-recorded. Subsequently, the stroke and had assumptions about the value of accessible inter
revised sample materials were presented for further comments by ventions for this clinical group.
focus group members and individual interview participants. After
a consensus and information power were reached the research
team used all the constructive feedback and suggestions from Rigour
participants to develop the final intervention. This included re- This paper reported on this qualitative study in adherence to the
recording relaxation scripts, adding additional scripts suggested Consolidated Criteria for Reporting Qualitative Research (COREQ)
by members, developing the name and the logo of the interven (see Supplementary File 1) [75]. A secondary senior author and
tion, and finding a suitable video hosting platform to share the analyst (BR) provided supervision and peer debriefing meetings
videos on for future evaluation studies. throughout all stages of the thematic analysis as recommended in
Following the method of Palmer et al. [72], participants were the literature [76].
subsequently shown the anxiety and depression outcome meas
ures (BOA and SADQ-10) and asked to consider MCID for stroke
patients after using the intervention. Participants were also asked Results
to comment on what specific anxiety and depressive symptoms
on those measures they believed the intervention should target Twelve people with aphasia participated in the study (see Table 2
for improvement. for participant demographic information). Thematic analysis iden
All interviews were video-recorded online via ZoomTM [56] tified three overarching themes (see Table 3). The first theme,
using encrypted software and transcribed verbatim by the psych “The importance and need for appropriate psychological care
ologist. The researcher, REH, then used the videos to determine after stroke” contained two subthemes, the first subtheme
the severity of each participant’s aphasia, using the ASR measure. explored how Mood disturbances are common and can be severe
The videos were subsequently erased, and the transcripts stored after stroke, and the second, explored participants’ experiences
securely at the University of Technology Sydney. navigating the dearth of appropriate psychological treatment
options for people with aphasia. The second overarching theme,
“Perspectives on Relaxation” was comprised of two subthemes.
Data analysis
The first subtheme was centred on participants’ “general positive
Qualitative data was collected analysed by the female research views towards using relaxation,” and the second explored
psychologist (REH) using thematic analysis according to the “technology as a suitable medium for relaxation therapy.” The third
method of Clarke and Braun [54,73]. The analyst had prior training overarching theme was participants’ “Perspectives on developing
and experience in thematic analysis delivered by a secondary the intervention” and was comprised of two subthemes the first
senior author (BR). No prior relationship was established between being “Different preferences when using relaxation strategies,” fol
REH and participants before the study’s commencement. lowed by “acceptability of the “Kalmer” relaxation intervention” and
Following the focus groups and interviews, all visual recordings finally, “improving treatment adherence/compliance.”
were transcribed onto Microsoft word and read thoroughly by the
research psychologist alongside field notes made during the focus
groups. Following the guidance and recommendations of Braun
Core theme 1: the importance and need for appropriate
and Clarke, no methodological, theoretical, or philosophical frame
psychological care after stroke
works were employed to analyse the data so as not to comprom
ise the integrity of the data [53,74]. An inductive approach was Participants all indicated that psychological rehabilitation was just
used, meaning initial codes were created from reading the tran as important to them as their physical rehabilitation after their
scripts. These codes were then grouped into broader categories stroke. Participants also noted their personal experiences with
to make themes and subthemes. See Table 1 for a detailed managing their mental health following stroke and the lack of
explanation of the data analysis process. The primary analyst treatment options available to them.
Table 1. Steps involved in the thematic analysis (adapted from steps outlined in Braun and Clarke 2006).
Steps Description
Familiarisation with data. Transcripts along with field notes were read in their entirety numerous times. Initial impressions of the data were then formed,
and more notes were made alongside the transcript. Patterns in the data were identified.
Generating initial codes Initial codes were then generated through grouping quotations that were related to one another or that held a similar message.
The groups were named according to the message they represented and labelled as “codes.”
Searching for themes Broader themes were then generated from these initial codes. Through the supervision of senior secondary researcher/analyst, a
hierarchy was formed of themes and subthemes. During this phase, some themes became subthemes, more broader themes
were generated, and certain codes were discarded if they were no longer considered relevant.
Reviewing the data These core themes and subthemes were reviewed again and refined further under supervision. The Secondary Author (BR)
provided feedback on the analysis before write up during research meetings. During this process core themes were re-named,
and more subthemes were created. If there was overlap between any subthemes, they were collapsed into one subtheme.
Defining and naming themes Overall, three core themes and seven subthemes were identified and named by both the initial coder (REH) and Secondary
Author (BR). These themes were then checked against the original transcripts to ensure they were consistent with the
raw data.
Producing the report During write up, themes and subthemes were described succinctly and illustrative quotations from participants were selected. No
miscellaneous or minor themes were identified.
DEVELOPMENT OF “KALMER” RELAXATION INTERVENTION 5
Subtheme 1: mood disturbances are common and can be severe “Suicide. Suicide. It really hurt.”
after stroke (Person 12, Interview 4, Aphasia Severity Rating: 1, Below mean years
Many focus group participants reported feeling overwhelmed since stroke)
after their stroke and described a “rollercoaster of emotions.” Other contributing factors to participants’ low mood and anx
Specifically, participants reported feeling anxious about their iety after stroke included being isolated from previous friendship
future, depressed about their current situation and frustrated groups, lack of support in the home with daily tasks, other life
about not being able to communicate or express how they were stressors exacerbating their mental health, and feeling over
feeling to others. One participant described going through the whelmed and overstimulated throughout the day whilst engaging
various stages of grief over her “old life” before finally reach in rehabilitation. Participants also mentioned that time was
ing acceptance. important for recovering psychologically after a stroke. Some par
“You feel sad, then angry and then different, every month it’s a different ticipants reported that their mental health was most affected dur
emotion. There are different stages of grieving. At the end you must ing the earlier stages of their recovery and that it took years to
accept that you will be disabled permanently.” deal with their grief and reach acceptance. Some also noted that
(Person 2, Focus group 1, Aphasia Severity Rating: 2, Above mean years there are days when their mental health is still impacted by a
since stroke) stroke many years after their recovery.
One participant disclosed experiencing severe distress that cul “At the beginning I thought “why me” for three years and then after that
I was calm. I needed to wait a while before I calmed down. I had to wait
minated in suicidal ideation. This participant saw her distress as a and see.” (Gestures used – three fingers)
direct result of having her mental health needs neglected by hos
(Person 3, Focus group 2, Aphasia Severity Rating: 1, Below mean years
pital staff. This participant also disclosed that these depressive
since stroke)
symptoms resulted in them disengaging entirely from their phys
ical rehabilitation for several months, delaying their recovery “ … Slowly your mood and anxiety calms down, down, down on its own.”
significantly. (Person 10, Individual Interview, 2; Aphasia Severity Rating 3, Above mean
years since stroke)
Table 2. Participant demographics table.
Variable Mean range
Subtheme 2: dearth of psychological treatment options for
Mean age in years (SD) 62 (13.9) (43–82)
stroke survivors
Mean years since stroke (SD) 9.9 (10.6) (1–30)
Number of participants (N ¼ 12) Other focus group members also discussed feeling as though
Females 6 their mental health was neglected during their recovery in hospi
Males 6 tals. Specifically, participants discussed that greater emphasis was
Type of stroke placed on physical rehabilitation compared to psychological
Haemorrhagic 4
Ischemic 8 rehabilitation. They reported that all their coping strategies were
English as first language 11 self-directed or given to them by their close family members.
Reported physical disability 9 Furthermore, they reported that their hospital psychologists were
Reported mood impairment 9 not trained in communicating with people with aphasia and so
Reported access to a carer 7
they were often denied the opportunity to express how they
Reported living alone 3
Regular users of technology 12 were feeling or why they were feeling depressed or anxious.
Reported no prior experience with relaxation 3 “ … I had to have my daughter come up and do relaxation with me in
Aphasia Severity Rating of 1 3 the hospital.” (Person 5, Focus group 1, aphasia severity rating: 1, above
Aphasia Severity Rating of 2 3 mean years since stroke)
Aphasia Severity Rating of 3 5
Aphasia Severity Rating of 4 1 “It’s such a stressful event in people are totally out of their comfort
zones … And yet, I was expected to toe the line as far as all the other
therapies went as far as doing everything put in front of me. At no stage “Yoga helps me to calm myself and slow down my heart rate.”
was guided relaxation, given any importance. I had to do it by myself by
looking at the window at clouds.” (Person 9, Individual interview, Aphasia Severity Rating: 3, Below mean
years since stroke). (Gestures: Participant pointed to his heart)
(Person 1, Focus group 1, aphasia severity rating: 4, above mean years
since stroke) It was also reported that using relaxation strategies during
their recovery not only improved their psychological well-being
Participants also discussed the need to normalise care for men but helped improve their physical health and rehabilitation out
tal health concerns after stroke. It was agreed that psychological comes. Particularly, one focus group member reported that mind-
rehabilitation should be given equal importance to other physical body relaxation helped with their restricted mobility. Others
rehabilitation, such as speech therapy, physiotherapy, occupa reported that relaxation helped them to sleep at night, which in
tional therapy, etc. Furthermore, participants discussed the need turn had benefits for their overall physical health. One participant
to normalise depression and anxiety after stroke to help remove reported that they had been using relaxation before their stroke
feelings of shame associated with mood impairments through to manage another chronic health issue and continued to use it
psychoeducation. Specifically, participants reported needing to be after stroke to manage their sleep difficulties.
informed about both the biological and environmental causes of
mood problems after stroke and information on the range of “Yeah, so mind body relaxation really helps with my rehabilitation, with
mobility and is an important part of my rehab.”
“holistic” treatments and therapies available outside of pharmaco
logical interventions. (Person 4, Focus group 1, Aphasia Severity Rating: 1, Below mean years
since stroke).
“It is important for people not to blame themselves if they have a
diagnosis of depression and anxiety after stroke.” “I use the calm app every night before bed to help me sleep.”
(Person 2, Focus group 1, Aphasia Severity Rating:2, Above mean years (Person 9, Individual interview, Aphasia Severity Rating: 3, Below mean years
since stroke) (This statement was typed in the ZoomTM chat) since stroke). (Participant held his phone up to the camera to show the app)
“ … if you’ve been diagnosed … it’s not your fault, your brain has had an All participants reported that the current relaxation strategies
injury and there’s a lot of stuff that’s going on up there that’s impacting they used hadn’t been modified for people with aphasia. Thus,
and affecting your body so all those unseen issues … I just think we need
some participants with more severe impairments found their
to help take a load off that person.”
experiences of using relaxation to be too challenging because the
(Person 1, Focus Group 1, Aphasia Severity Rating: 4, Above mean years recordings they used were not communicatively accessible.
since stroke)
Specifically, some relaxation activities were too long, the pacing
of instructions was too fast, and often the language used was too
complex. One participant reported that they found unstructured
Core theme 2: perspectives on relaxation
relaxation tasks boring and noted stroke survivors may struggle
This second core theme explores participants’ diverse experiences to concentrate during practice. It was agreed that unmodified
with using relaxation before the study. Most participants reported relaxation strategies may be too cognitively demanding for those
having tried various relaxation strategies and experiencing a wide with stroke-related cognitive and communication impairments.
range of benefits from ongoing practice. The small number of “I don’t know why, but I remember many times I was trying to use the
participants who had not tried relaxation or who found it difficult strategies a long time ago and it was hard for me, I was thinking about
to practice also shared their experiences. Finally, participants dis other things and was bored.”
cussed using technology for relaxation therapy to improve access (Person 2, Focus group 1, Aphasia Severity Rating: 2, Above mean years
to psychological interventions for people after stroke. since stroke).
Subtheme 1: general positive views towards using relaxation Despite using relaxation strategies daily and feeling benefits
Within the data, there were a variety of experiences of using relax from it, one participant reported that stroke survivors need more
ation. Whilst the majority of participants used/had used relaxation than relaxation. The participant discussed the need for psycholo
strategies regularly as part of their recovery, a minority of partici gists to upskill and learn to communicate with people who have
pants had no experience with using relaxation strategies and did aphasia to understand why the person is anxious and depressed,
not know the meaning of the term. Those who had tried relaxation and to understand the root of their emotions. The person
strategies had enjoyed yoga, mindfulness, or imaginal relaxation. reported feeling very isolated, frustrated, and panicked in the hos
Those who had tried relaxation reported experiencing a range of pital because the focus was solely on physical recovery, and no
mental health benefits from it. For example, participants used one took the time to provide basic counselling. However, other
relaxation to reduce physiological symptoms of anxiety and stress, participants noted that they preferred relaxation as a psycho
to keep them grounded, productive, and to help them “think logical intervention because some stroke survivors are not able to
more clearly.” One participant reported that relaxation enabled speak or may be too anxious to talk about their emotions. It was
them to live authentically and that they had been using relaxation also mentioned by another participant that they wanted to
consistently for years to improve their daily functioning. receive supportive counselling from their family and friends and
preferred to have relaxation as a formal intervention for their
“It can make you think things out more clearly, it just ahh everyone mood, rather than a talking-based therapy.
should probably have it, not just because you had a stroke, I just think it’s
a good thing.” “Talking helped me … along with support groups.”
(Person 3, Focus group 2, Aphasia Severity Rating: 2, Below mean years (Person 12, Individual Interview 4, Aphasia Severity Rating, 1, Below mean
since stroke) years since stroke)
“It keeps me calm.” “The relaxation was useful but what would have been most useful was
having someone engage with me. Someone to bring forth what I was
(Person 4, Focus group 1, Aphasia Severity Rating; 1, Below mean years panicking about that was really tricky. I have volunteered and worked
since stroke) with homeless people and children and I’ve seen psychologists use all
DEVELOPMENT OF “KALMER” RELAXATION INTERVENTION 7
these props to communicate with these people and I thought wouldn’t enough for them while others reported needing it every day or a
that be great for people with aphasia, at an adult level obviously.” few times per week. Those who reported they would use it less
(Person 1, Focus group 1, Aphasia Severity Rating: 4, Above mean years often believed this was related to them being too busy with their
since stroke) other rehabilitation appointments.
“Yes, its good because people don’t talk about their emotions after “I would do it every day if you’re new to relaxation and if it was
stroke … Some people are too scared to talk and write about how they immediately after your stroke.”
are feeling. People are not talking because it’s hard to talk even years
after their stroke.” (Person 5; Focus group 1, Aphasia Severity Rating: 2, Below mean years
since stroke).
(Person 2, Focus group 1; Aphasia Severity Rating, 2, Above mean years
since stroke) “If someone is having speech therapy it would be good to have it maybe
three times a week.”
“Oh, it was just beautiful.” Suggestions for increasing treatment compliance for people
(Person 11, Individual interview; Aphasia Severity Rating: 4, Below mean with aphasia were made. For example, participants reported that
years since stroke) using strategies, such as “email reminders” or conducting relax
“I could do it every day … .”
ation “in group settings” would likely increase compliance and
hold people accountable. Additionally, some focus group mem
(Person 12, Individual interview: Aphasia Severity Rating: 1, Below mean bers suggested that participants with busy schedules should com
years since stroke).
plete relaxation first thing in the morning or right before sleep.
After listening to several audio samples of potential interven One group member suggested that the intervention incorporate
tion material that had been recorded by professional voice artists, simple and accessible technologies, such as a website with all
all participants reported needing a less formal and more natural relaxation scripts uploaded on a single home page. They reported
tone, with a moderate pace and extra time to transition to the that these hosting websites should be easily accessible for people
next movement in the relaxation strategy. Participants were also with aphasia on their ipads, smartphones, or laptops. Participants
asked to change specific words in the relaxation scripts for discouraged using “outdated” technologies, such as DVDs or CDs
example the word “tense” was not liked, and the word “tighten” as not many people would have access to DVD/CD players
was preferred. They also expressed that they would need a variety at home.
of settings for the imaginal relaxation task and gave examples, It was emphasised that participants should be made aware
such as “campfire,” “waterfall,” and a “mountain.” Additionally, the that “it takes time” to see improvements in mood and become
importance of having a variety of relaxation strategies to choose skilled in relaxation and to not “give up” early on in relaxation
from was discussed as every individuals’ preference would vary. training. Importantly, it was agreed amongst focus group partici
“I think make it slower for the imaginal relaxation.” pants that research trial participants would need a good rationale
for completing relaxation and information on the importance of a
(Person 9, Individual Interview 1, Aphasia Severity Rating:3, Below mean
years since stroke)
holistic approach to recovery after stroke.
“ … It takes times to improve maybe in six months, sometimes people are
“A variety of different relaxation strategies would be good.”
slowly learning about becoming less anxious and accepting of their
(Person 1, Focus group 2: Aphasia Severity Rating: 3, Below mean years limitations and you do not know where you will be at the end of the
since stroke) relaxation. You need time, you must wait slowly until you get better.
Overtime things do get better.”
“Using the word tense is associated with feeling sore.”
(Person 2, Focus group 1; Aphasia Severity Rating:2, Above mean years
(Person 2, Focus group 2, Aphasia Severity Rating: 1, Below mean years since stroke)
since stroke)
“I think you need to emphasise that it is important as all the rest of
Interestingly, all participants disliked the instructional anima treatments. If you’re looking at your recovery in a wholistic way and just
tions used to accompany the relaxation scripts as they felt they giving that point … I know some people won’t agree but it’s worth
needed something more realistic to help ground them. They a shot.”
reported that they would prefer a recording of a real person (Person 1, Focus group 1: Aphasia Severity Rating: 4, Above mean years
doing the tense and release movements. Following this advice, since stroke)
the researcher (REH) created a demonstration video of herself
Finally, participants emphasised that all users should be
completing a progressive muscle relaxation exercise. This was
informed that the treatment was co-designed by stroke survivors
viewed positively by all focus group members. However, some
specifically for people with aphasia. It was considered that having
participants noted that visual cues may be redundant given most
stroke survivors support the implementation of the intervention
participants would be closing their eyes to complete the tasks.
One participant reported that they would feel less isolated watch would further enhance treatment adherence. Most importantly,
ing a stroke survivor with physical disabilities performing the participants were most appreciative of being consulted in the
relaxation exercises and said it would give them a sense of design of the “Kalmer” intervention. They wished to have an
“camaraderie,” particularly during the early stages of active role in all phases of their treatment and recovery.
their recovery. “In looking towards the final product, letting people know that consulting
with stroke survivors and people with lived experience of stroke have
Subtheme 3: improving treatment compliance contributed to the development of this video and even to the point of
saying it’s been borne out of the knowledge that there haven’t been
Barriers to practicing relaxation consistently were identified by enough effective treatments. I was always interested in being included in
focus group members. Specifically, a lack of time due to attending the bigger picture of my treatment and not just be on the receiving end
medical appointments and other physical and speech rehabilita of something that was just given to me, give the reason, give me the why,
tion appointments was considered the greatest barrier. Others you know, I’m an intelligent person treat me like one or I’ll feel like less of
reported feeling very tired after their busy day and simply not a person.”
wanting to engage in any activities once home. One participant (Person 1, Focus group 1: Aphasia Severity Rating: 4, Above mean years
mentioned that people with stroke may find it difficult to remem since stroke).
ber to practice their relaxation.
“I’ve got a very busy week from when I wake up. My physical rehab is
more of a priority for me at the moment. As soon as I get home, I can Meaningful change
rest. So maybe at the end of the day might be helpful, I’ll wait and see
Focus group participants had varying opinions as to what symp
though, it’s hard, I’m very tired by the end of the day.”
toms are important for a relaxation intervention to target. Most
(Person 2, Focus group 2: Aphasia Severity Rating: 1, Below mean years participants agreed that it was more important for the “Kalmer”
since stroke) (Participant pointed to calendar with lots of appointments).
intervention to target anxiety rather than depression. Participants
DEVELOPMENT OF “KALMER” RELAXATION INTERVENTION 9
also had varying beliefs when discussing what constitutes a min older people and those with severe aphasia and physical disabil
imal clinically meaningful improvement on outcome measures. ities. In fact, most focus group members preferred technology-
One group said they would like to see an improvement of seven based interventions to in-person relaxation therapy as undertak
points on the anxiety outcome measure and three on the depres ing treatment from home was more accessible. This result is con
sion outcome measure, while the other group reported a reduc sistent with the systematic review which found that technology-
tion in symptoms by one point on both measures would still based psychological interventions for stroke survivors achieve
make the intervention worth doing. Other participants reported high satisfaction and compliance rates [35]. Given “Kalmer’s”
that they could not determine what minimum improvement score potential acceptability for people with severe communication
they would deem worthwhile, as scores on outcome measures impairments, this intervention may also have benefits for stroke
would depend on what “stage the person was at during their survivors with other cognitive impairments. Future research might
recovery” and they believed people’s mood typically improves explore the potential of this intervention for stroke survivors with
over time as they learn to accept all of the stroke-related changes mild to severe cognitive impairment.
in their life. When exploring the acceptability of the relaxation intervention
for stroke survivors with physical disabilities, some participants
reported that utilising progressive muscle relaxation would be
Discussion
challenging for those with sensory loss and paralysis. However,
Anxiety after stroke is common [6,7], and people with aphasia are other participants believed such practices would help restore their
not only more vulnerable to these disorders but also have worse “mind-body connection.” Emerging research has shown that
outcomes than those without impairments [12,13]. Stroke audit patients with sensory loss and paralysis reportedly benefit from
data shows that psychological care after stroke is limited and practicing mindfulness of the body [79]. It was found that practic
inadequate [14] and the evidence base for treatment efficacy for ing mindfulness of the body through visualisation and imaginal
stroke survivors is poor and not inclusive of stroke survivors with techniques can increase both acceptance and awareness of the
aphasia [15,19–21]. While relaxation strategies have been shown body, even in places with reduced or no sensation [79–81].
to be an acceptable, feasible, and beneficial treatment option Additionally, mindfulness of the body can also help individuals
[30,33,37,38,65,66], a suitable intervention hasn’t been developed with sensory loss and paralysis accept their disabilities and their
or evaluated with and for people with aphasia [15,19]. As a first individual identities [79,80].
step to address this knowledge gap in the literature, this study This study also explored “clinically meaningful change” to help
aimed to consult with stroke survivors who have aphasia to co- inform future evaluations of the “Kalmer” relaxation intervention.
design a relaxation intervention. The efficacy of most psychological treatments is currently eval
The key findings of this study highlight the importance of uated based on statistically significant changes in pre and post-
developing a self-managed relaxation intervention suitable for outcome measures, however, there are limitations to only using
people who have aphasia. Notably, most participants reported this method [82]. For example, such statistical analyses are not
feeling that their psychological care after stroke was neglected by sensitive to individual changes in symptoms following treatment
health professionals and mostly self-directed. These findings are which are valuable and necessary for individualised treatment
supported by the Stroke Foundation audit data [14] and other planning as well as understanding the trajectory of a patient’s
qualitative studies which found that most stroke survivors with mental illness and how a patient responds to treatment [82–85].
aphasia experienced inadequate psychological support during In this study, participants’ views on what improvement score
rehabilitation [23,26,32,78]. Furthermore, other qualitative studies would be meaningful and valuable to them varied significantly
with multi-disciplinary stroke health professionals found that psy (one point through to a seven-point improvement) however it
chological rehabilitation after stroke is not always prioritised in was agreed by all focus group members that the outcome meas
healthcare systems [23] and stroke health professionals have lim ures used appeared useful for detecting improvements. It was
ited training and resources to support stroke survivors with apha beyond the scope of this study to reach a majority consensus on
sia experiencing mood problems [23,24]. Thus, developing and meaningful change; further research is needed with a larger num
implementing a self-managed technology-based relaxation inter ber of participants. Such research could determine meaningful
vention, inclusive of people with severe aphasia, is a viable solu change for a clinical group using the Delphi method, whereby
tion to the many barriers to treatment. participants provide their views on meaningful change anonym
Notably, participants who did not experience significant anx ously and then researchers present the group responsible for dis
iety or depressive symptoms, still reported that they would bene cussion where a consensus can then be reached [86]. Future
fit from using the “Kalmer” relaxation intervention. Thus, research should use these processes to help facilitate how to
relaxation interventions are not only seen as useful as a treatment score improvements after the “Kalmer” intervention is interpreted
for anxiety but could have potential benefits for the overall well- and evaluated at both a clinical group and individual level [82].
being of stroke survivors. This is further supported by other stud
ies that have shown that relaxation is useful and enjoyable for
Strengths and limitations
stroke survivors who do not have any diagnosed mental health
disorders [29,30,34]. Thus the “Kalmer” relaxation intervention This co-design study likely benefitted from the inclusion of partici
may be used also as a preventative intervention for this vulner pants whose preferences and experiences with relaxation varied
able population [15,23]. These findings collectively highlight the widely. Furthermore, participants had a variety of stroke-related
need for stroke survivors to have adequate and inclusive psycho impairments and were all at various stages of their physical and
logical treatments available and that future studies should focus psychological recovery post-stroke. This study also explored par
on the development and evaluation of such self-managed inter ticipants’ perspectives on how the relaxation intervention might
ventions for people with aphasia. also effect depressive symptoms, useful given the rate of comor
Importantly, the samples created for the “Kalmer” intervention, bid anxiety and depression [68]. This study also had some limita
were viewed positively and considered acceptable and feasible for tions. It is important to acknowledge that participants
10 R. EL-HELOU ET AL.
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DEVELOPMENT OF “KALMER” RELAXATION INTERVENTION 13
trials: recommendations for the future based on a system Appendix 1. Broad topic guide
atic review of existing studies. PLOS Med. 2011;8(1):
Have you tried relaxation before?
e1000393.
What have you tried?
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What do you think about relaxation?
wider perspectives on digital inclusion. Aphasiology. 2016;
Is relaxation helpful?
30(2–3):112–132.
Sample intervention materials shown to participants.
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What do you think of these sample materials?
guide to designing interventions. 1st ed. London (UK):
What do you like?
Silverback Publishing; 2014. p. 1003–1010.
What do you not like?
[89] Thomas SA, Walker MF, Macniven JA, et al. Communication
Would you use our relaxation videos?
and low mood (CALM): a randomized controlled trial of
Can people with aphasia use this?
behavioural therapy for stroke patients with aphasia. Clin
What can we change?
Rehabil. 2013;27(5):398–408.
What else are we missing?
[90] Northcott S, Simpson A, Thomas SA, et al. Solution focused
What will get in the way of practice?
brief therapy in post-stroke aphasia (SOFIA trial): protocol
How can we help with that?
for a feasibility randomised controlled trial. AMRC Open
Res. 2019;1:11.
[91] Ryan B, Hudson K, Worrall L, et al. The aphasia action, suc For MCID:
cess, and knowledge programme: results from an Have a look at these surveys asking about anxiety and depres
Australian phase I trial of a speech-pathology-led interven sion symptoms:
tion for people with aphasia early post stroke. Brain What symptoms are important to target?
Impairment. 2017;18(3):284–298.
What overall score improvement would make this treatment
worthwhile on the BOA?
What overall score improvement would make this treatment
worthwhile on the SADQ-10?