Experience-based co-design
EBCD involves a structured, facilitated two-phased process that comprises six stages (see table 1). The discovery phase of EBCD involves the first three stages: setting up the project (stage 1), observations of a particular rehabilitation pathway and engaging patients, significant others, and staff concerning their experiences of rehabilitation (stage 2 and 3). The co-design phase also comprises three stages. In this phase, end-user experiences are analyzed to identify emotional “touchpoints” in healthcare services, where something could have been done better, or which exemplify a good experience. Identified “touchpoints”, supported by existing evidence on the topic, are then presented to all end-users to trigger discussion about local quality issues and agree on a set of improvement priorities, through co-design groups (stage 4). “Touchpoints” can be presented by using “trigger films” or “touchpoint lists”, experience maps, list of improvements or interview quotes (37). Smaller co-design working groups (stage 5) and a celebration event brings the co-design phase to an end (stage 6) (36). Reflective questions such as “what did we learn from this stage”, “how was the power relation between participants and how can we make it more equal” and “how useful was this stage for the research process” support the next stages and actions in the EBCD process (25,34). The GRIPP2 reporting checklist on patient and public involvement in research was reported in an additional file (39).
Discovery phase
Stage 1: Setting up the study
In Denmark stroke rehabilitation may take place in different stroke rehabilitations settings. Initially, the stroke survivor is admitted to an acute hospital stroke unit. When required, rehabilitation may continue in a sub-acute hospital stroke unit and/or rehabilitation continues in the municipalities (i.e., home-rehabilitation or in rehabilitation centres). Participants in need of rehabilitation in all rehabilitation settings most often have more complex difficulties (i.e. cognitive, emotional, mental and/or physical) and need individualized and intensive interdisciplinary rehabilitation delivered in acute and subacute stroke units, before they can continue their rehabilitation in the municipalities (40). Two acute stroke units, two subacute stroke units and two stroke rehabilitation units in the municipalities were engaged in stage 1. The head therapist of each setting identified two therapists (one OT and one PT) from their own setting to participate in focus group interviews in stage 2 and 3. All therapists voluntarily agreed to participate in the project. Stroke survivors living at home who had just ended their rehabilitation process throughout all rehabilitation settings (i.e., participants with more complex difficulties) and significant others (i.e., someone who was close to the stroke survivor and offered support) were identified by the municipal therapists to participate in interviews in stage 2 and 3.
Stage 2 and 3: Engaging patients, significant others, and staff and performing observations
To capture experiences in relation to the stroke rehabilitation process, unmet needs, and the integration of ICT as part of the rehabilitation process and in everyday life, individual or focus group interviews were held with stroke survivors (n=18), significant others (n=13), and therapists (n=9) from different settings of the Danish stroke rehabilitation process. Stroke survivors and significant others were interviewed 6–12 months post-stroke. The inclusion criteria for stroke survivors were a) ability to understand and answer interview questions and b) previous experience of ICT before and after stroke. For therapists, criteria were that they should a) work in one of the various settings of stroke rehabilitation, b) as either PT or OT. Analysis of the transcribed interviews was performed using a constructivist grounded theory (GT) approach comprising open and focused coding, constant comparative method and theoretical sensitivity (41). The results from these interviews have been reported elsewhere (5,6,13). In summary, findings indicated that stroke survivors and significant others welcomed the use of ICT and apps to support stroke rehabilitation, since they may promote activity, participation in everyday life, independency, and adherence to perform person-centred exercises (5,6). Therapists highlighted that ability to use ICT and apps are crucial for stroke survivors in today’s society and that ICT and apps may support continuity and coherence of the rehabilitation process as well as support a person-centred rehabilitation e.g., through videorecorded exercise therapy and guidelines (13).
A constructivist GT analysis was made by the first author (and discussed with the last author) to find “emotional touchpoints” across interviews to inform stage 4. The purpose of a cross-analysis was to make sure to bring participants’ experiences and voices to the next research stage and to transform these into actions. Additionally, non-participant and participant observations were performed by the first author in five of the six stroke rehabilitation settings included in this study for a total of five full days. Organizational processes, context, interventions, and interactions among therapists, stroke survivors and significant others were observed. Observations were used to support and contribute to the identified “touchpoints” (see table 1). The observations had several purposes and benefits. As an “outsider” in all rehabilitation settings, the obvious benefit was that relations and connections were made with all participating therapists. Therapists also used the opportunity to ask more about the project and get a greater insight to the purpose of the next stage of the research process. Insight to similarities and differences in local organizational processes was valuable knowledge. For example, knowledge regarding the short hospitalization and the number of therapists involved in the stroke survivors’ rehabilitation process made it clear that especially in acute rehabilitation settings continuity was difficult to achieve, which may challenge the implementation of the apps. Observations in the municipality in Jutland were not performed since this municipality was included a bit later in the research process.
Table 1: Overview of purposes and activities in the EBCD process
|
EBCD phases
|
Activities
|
Purpose
|
Discovery phase
|
Stage 1 Setting up the project 2014-2015
|
Engaging stroke rehabilitation settings (n=6): Acute stroke units (n=2) Subacute stroke units (n=2) Stroke units in the municipalities (n=2)
|
Engage different stroke rehabilitation settings
|
Stage 2+3 Engaging stroke survivors, significant others, and staff
2014-2017
|
Interviews (focus group or individual) Stroke survivors (n=18) Significant others (n=13) PTs (n=4) OTs (n=5)
|
Explore experiences of stroke rehabilitation across sectors, identification of unmet needs and use of ICT in the rehabilitation process and everyday life
|
2021
|
Observations of stroke rehabilitation settings (5 settings)
|
Co-design phase
|
Stage 4 Co-design meetings 2021
|
Workshop 1 (Jutland) (n=14) Stroke survivors (n=2) Significant others (n=2) PTs (n=3) OTs (n=3) App developers (n=2) Researchers (n=2)
|
Workshop 1 (Funen) (n=11) Stroke survivors (n=2) Significant others (n=2) PTs (n=2) OT (n=1) App developers (n=2) Researchers (n=2)
|
Present emotional “Touchpoints” and the modules in “Mit Sygehus”. Additionally, to generate concrete input on the content of each module, to meet stakeholders’ needs and to prioritize the modules.
|
Scoping review on existing app solutions to support stroke rehabilitation
|
Stage 5 Small co-design meetings 2021
|
Step 1: Co-design meetings in Jutland working with “knowledge” module (n=4) PT (n=1) OT (n=1) Head therapist (n=1) Representative from patient organization (n=1)
|
Step 1: Co-design meetings on Funen working with “knowledge” module (n=3) PT (n=1) Speech therapist (n=1) Physician (n=1)
|
Co-design content in “Mit Sygehus” to meet stakeholders’ prioritized needs. Furthermore, to assess if the “training module” was suitable to meet stakeholders’ needs and applicable in the different rehabilitation settings.
|
Step 2: Co-design meetings in Jutland working with “training” module (n=4) PT (n=1) OT (n=1) App developer (n=1) Researcher (n=1)
|
Step 2: Co-design meetings on Funen working with “training” module (n=4) PT (n=1) OT (n=1) App developers (n=2) Researcher (n=1)
|
Stage 6 Celebration event 2021
|
Workshop 2 (Jutland) (n=10) PTs (n=2) OTs (n=3) Representative from a patient organization (n=1) App developers (n=2) – one attended online Researchers (n=2)
|
Workshop 2 (Funen) (n=9) Stroke survivor (n=1) Significant other (n=1) PT (n=1) OTs (n=2) App developers (n=2) Researchers (n=2)
|
Presentation of app solution and “hands-on” test of all the content in the app, as well as feedback on written instructions to be used in later a testing period
|
Workshop 2 (Funen) (n=4) Online PT (n=1) OT (n=1) App developer (n=1) Researcher (n=1)
|
Co-design phase
Stage 4: Co-design meetings
Emotional “touchpoints” that shaped the participants’ overall experiences (table 3) were to be used in the upcoming workshops. Additionally, knowledge from a recent scoping review on existing apps used to support stroke rehabilitation (42) supported the list of “touchpoints” and the content of the workshops. The review showed that app solutions to support stroke rehabilitation can be used in different rehabilitation settings, however most existing app solutions only support a limited aspect of the rehabilitation process, e.g., assessment or training, and do not accommodate end-users’ need for more comprehensive person-centred solutions.
Workshop 1:
The purpose of the first workshops was to generate concrete input on the content of each module of the apps, to meet the needs of all participants and to prioritize the modules. The workshops were planned and led by the first and last author in the spring of 2021 and took place in the Region of Southern Denmark (one in Jutland, the western part of Denmark, and one on Funen, the central part of Denmark). The head therapists (mentioned in stage 1) identified one OT and one PT from each rehabilitation setting to participate in the workshops. Therapists from the municipalities identified stroke survivors living at home that had either recently terminated or were about to terminate their rehabilitation process and had received rehabilitation in all rehabilitation settings (acute, subacute and rehabilitation in the municipalities, i.e., having complex difficulties, however being able to participate for two hours and without severe communication deficits) and a significant other to participate in the workshops. In the Jutland workshop, 14 participated and 11 on Funen (see table 2 for participant characteristics). Of the 12 therapists participating in stage 4, three had also participated in the interviews in stage 2 and 3. Each workshop lasted for two hours.
Table 2: Characteristics of participants in the two workshops
Participants
|
Age, years
|
Gender
|
Origin
|
Workshop 1
|
Workshop 2
|
Rehabilitation setting
|
Work experience in neurological rehabilitation, years
|
Stroke survivorA and husband
|
63/66
|
Female/Male
|
Funen
|
X
|
|
|
|
Stroke survivorA and wife
|
85/79
|
Male/Female
|
Funen
|
X
|
|
|
|
Stroke survivorA and wife
|
57/55
|
Male/Female
|
Funen
|
|
X
|
|
|
Stroke survivorA and cousin
|
37/35
|
Female/Female
|
Jutland
|
X
|
|
|
|
Stroke survivor and husband
|
69/74
|
Female/Male
|
Jutland
|
X
|
|
|
|
OT
|
44
|
Female
|
Funen
|
|
X
|
Acute
|
18
|
OT
|
47
|
Female
|
Funen
|
|
X (online)
|
Subacute
|
19
|
OT
|
38
|
Female
|
Funen
|
|
X
|
Municipality
|
10
|
OT
|
46
|
Female
|
Funen
|
X
|
|
Municipality
|
13
|
OT
|
46
|
Female
|
Jutland
|
X
|
X
|
Acute
|
4
|
OT
|
29
|
Male
|
Jutland
|
X
|
X
|
Subacute
|
6
|
OT
|
36
|
Female
|
Jutland
|
X
|
X
|
Municipality
|
3
|
PT
|
35
|
Female
|
Funen
|
X
|
X (online)
|
Subacute
|
11
|
PT
|
37
|
Female
|
Funen
|
X
|
X
|
Municipality
|
6
|
PT
|
43
|
Female
|
Jutland
|
X
|
|
Acute
|
14
|
PT
|
25
|
Female
|
Jutland
|
X
|
X
|
Subacute
|
2
|
PT
|
36
|
Female
|
Jutland
|
X
|
X
|
Municipality
|
8
|
Representative from patient organization
|
48
|
Female
|
Jutland
|
|
X
|
|
|
The workshop was started by participants giving written informed consent to participate, and consent to allow photographs to be taken during the workshops that could be used for presenting the results. Prior to attending the workshop, the participants had received written information about the project and the purpose of the workshops. The first author introduced the background for conducting the workshops. “Touchpoints” identified from stage 2 and 3 (table 3) were also presented i.e., the need for easier access to knowledge about stroke and the option to have the text read out loud. Furthermore, the need for more person-centred rehabilitation was presented, i.e., exercises that would be tailored to a person’s specific motor and/or cognitive difficulties, video-recorded guidelines for transfers, etc. Also presented were the need to minimize the gaps when a patient transfer between rehabilitation settings, through easier documentation and communication with significant others and colleagues across rehabilitation settings. Other important “touchpoints” presented were a need for follow-up when rehabilitation terminates, continuous support from therapists throughout rehabilitation and support to learn to use ICT and apps that may support rehabilitation and everyday life, thereby relieving strains on significant others. Additionally, a need for support to establish contact with peers/support groups was presented. Accommodating the expressed needs identified in table 3 was intended to lead to a more person-centred stroke rehabilitation and increased empowerment in stroke survivors and significant others (7,9,10,12).
Table 3: Emotional “touchpoints”
|
Emotional touchpoints - Needs and areas for improvement identified
|
Acute and subacute care in specialized stroke units (inpatient) Typically, 0-4 weeks
|
Transition to home-rehabilitation
|
Rehabilitation in the municipalities. Typically, 1-3 months
|
Maintenance phase (rehabilitation terminated)
|
Stroke survivors
|
- Easy access to relevant information (diagnosis, prognosis, and consequences (brochures, app solution) and “read out loud” function
- An overview of the goals and planned activities (rehabilitation plan)
- Assessments of the ability to use ICT and need to learn to use ICT (mobile phone, tablet, computer, apps)
- Need for person-centred guidelines and exercises
|
- Need for overview and transparency
|
- Managing everyday life (learning what deficits influence daily living and participation)
- Tracking (phone calls to feel safe/ physical activity tracking)
- Need for support to learn to manage ICT
- Staying connected through ICT
|
- Access to health professionals continuously (new questions arise, a need for answers)
- Support groups (peers)
|
Significant others
|
- Easy access to relevant information (diagnosis, prognosis, and consequences (brochures, app solution) and “read out loud” function
- Need for insight into rehabilitation plan
- Need for therapists to support person-centred daily training (relieving the significant others)
|
- Involvement
- No gaps
- Skills to manage new role
|
- Insight into rehabilitation plan
- Therapists to support daily training (relieving the significant others)
- Stroke survivor being able to manage ICT - training/skills (to feel safe/being able to participate in daily activities, gaining overview (work, hobbies, etc.)
|
- Lack of follow-up
- A “life-line” to reduce strain (responsibility shared with health professionals regarding adherence to exercises/activities) – reminders, phone calls, text messages, app solution)
- Peers to share experiences with
|
Therapists
|
- Assessment, goal setting and training of cognitive and physical deficits/resources (using ICT when relevant)
- Teaching skills to manage ICT and how to comprehend/get an overview of a complex rehabilitation process.
- Easy and simple ICT solutions for stroke survivors
- Person-centred guidelines for transfers, exercises, and daily activities (pictures, documents, videos, “read out loud” function)
- Easier documentation/communication in and across sectors (also with significant others)
|
- Sharing information across sectors (pictures, videos)
- Different IT systems in sectors is a barrier
- Fewer places to document.
|
- Training gross motor skills, fine motor skills and cognitive deficits
- Involving caregivers even more
- Learning to manage new life conditions – using ICT to compensate (calendar, reminders, dictate messages)
|
- Monthly/3-monthly phone calls from health professionals
- Access/contact to patient organizations (peers)
|
Next, participants were given an insight into what is already an option in “Mit Sygehus” (see figure 1). “Mit Sygehus” encompasses 12 different modules: 1) knowledge module (evidence-based information about the diagnosis, treatment, rehabilitation etc.), 2) an overview of all appointments, 3) patient measurements (e.g., weight, blood pressure, etc.), 4) significant others (i.e., information that is specifically important for significant others, such as peer support groups), 5) communication with health professionals through a chat function, 6) sharing patient data with health professionals, 7) contact information for relevant rehabilitation settings, 8) option to fill out relevant data or questionnaires prior to consultations, 9) reminders, 10) personal notes/diary, 11) audio recordings of consultations, and 12) video consultation providing significant others, cross-sectoral colleagues or the patient themselves the opportunity to participate in consultation without being present at the hospital. “Genoptræn.dk”, which can work as an integrated “training” module in “Mit Sygehus”, was also included for this study, to meet end-users’ need for easy access in one place to all relevant content related to the stroke rehabilitation (13). To accommodate earlier identified needs for more person-centred exercises and guidelines (5,6,13), prior to the workshop, we developed a “video recording” function for the “training” module. Video recordings are made by the therapists during sessions, for example recordings of specific exercises while the therapist is verbally supporting and guiding the stroke survivor. The person-centred recordings are then stored safely in the stroke survivors’ personalized app solution serving also as documentation and communication within and across rehabilitation settings. If the stroke survivor consents, significant others have the same access to the contents of the app.
The workshop was then divided in two stations in each end of the room, and participants were split into two predefined groups. The activities at each station lasted for 30 minutes, with a 15-minute break in between. The stroke survivors and significant others were paired with a therapist they knew, to create a safe space where they would feel comfortable and motivated to equally contribute to the workshops (43). Each workshop comprised three or four big “flip sheets” with seven modules from “Mit Sygehus”: “knowledge”, “training”, “reminders”, “chat”, “contact information”, “notes/diary”, and “video consultation/audio recordings of consultation”. Statements/suggestions from the identified “touchpoint” were added to each headline (as small written sentences), to support the discussions in the workshops (see photograph 1 and table 4). The module’s “appointments” and “significant others” were integrated in the “knowledge” “flip sheet”.
The first and last author who attended the workshop, made individual observational notes.
Lessons learned from the first workshops were that presenting the “touchpoint” analyses from earlier studies had a validating effect, since participants agreed on the needs identified. They were also asked to supplement the list of “touchpoints” on the flip sheets. Several inputs to make the “training” module more useful were identified. Also, recordings of the stroke survivors’ current functioning were mentioned, to make it easier to follow progression for all end-users:
“I would have liked that access to the exercises” (significant other, Funen)
“Insight to what exercises and the stroke survivors’ abilities before arriving here” (PT, municipality rehabilitation setting, Funen)
One stroke survivor furthermore pointed out that exercise therapy through video recordings should be available also after rehabilitation has ended in the municipality to continuously support adherence. Furthermore, a PT suggested that providing relevant person-centred information through an app could support coping with the new situation stroke survivors and significant others find themselves in:
“Relevant information may facilitate coping” (PT, subacute rehabilitation setting, Funen)
Each end-user also graded each module to be: 1) not important, 2) important, or 3) very important after working on each station (see table 4). For example, the “diary” module was graded “not important” by three participants while 14 did not grade this module and the “chat” module was only graded important by one therapist. The “training” module was graded “very important” by most participants, especially because it included the chance to make exercises more person-centred than was the case in existing, known solutions. Also, the idea that gait function, transfer guidelines or instructions for daily activities could be recorded and stored as documentation and shared for communication was highly welcomed and considered to be necessary for person-centred and empowering stroke rehabilitation. Significant others were also excited about the idea that exercise support was provided through the app, with reminders as additional support (see table 4).
Table 4: Input on the content and prioritizing the modules
Modules discussed in workshops
|
Input on the content in the modules (n=17)
|
Grade 1: not important
|
Grade 2: important
|
Grade 3: very important
|
Not reported
|
Knowledge module
|
- Stroke information and treatment
- Information about cognitive deficits
- The rehabilitation process and phases
- The maintenance phase (phase 4)
- Support group/peers
- Daily appointment/programme
- Video/audio of the information
|
|
|
17
|
|
Training module
|
- Step-by-step guidance about transfers, daily activities – also as communication
- Personalized video recordings of exercises and progress
- Easily accessible
- Available when rehabilitation determines
|
1
|
5
|
10
|
1
|
Reminder function
|
- Reminders to exercise and appointments
- Must be personalized
|
2
|
2
|
5
|
8
|
Chat module
|
- Worried that it will escalate
- Who will answer the questions and when?
- How long is this option open?
|
5
|
|
1
|
11
|
Note/diary module
|
|
3
|
|
|
14
|
Contact module
|
- Pictures of staff
- Contact information for all relevant departments and treating staff
|
|
1
|
7
|
9
|
Video consultation
|
- Participation from other stakeholders (social worker, coordinator, significant others, therapists from other rehabilitation setting, etc.)
- Video consultation/follow-ups better than phone calls
|
2
|
7
|
7
|
1
|
Empowerment exercise
As a final exercise, based on theory and literature on empowerment (9,10,44,45) participants marked on an empowerment model (constructed by the first author) which key elements they felt were important for their experience of empowerment in stroke rehabilitation. The model of empowerment contained six headings with supporting sentences: 1) communication (to and between health professionals and rehabilitation settings), 2) knowledge (about stroke, prognosis, rehabilitation plan), 3) support from health professionals, 4) involvement (in goal setting and in rehabilitation plan and activities), 5) control and overview, and 6) mastery (to act on their own, to participate in valued activities, to find the knowledge needed). The results from this exercise indicated that better communication between health professionals (e.g., on the stroke survivors’ goals, progress, and status) when a patient transfer between rehabilitation settings, is important to experience empowerment. Sufficient knowledge about stroke and the rehabilitation plan, active involvement and greater overview of own rehabilitation, and skills to participate in valued activities in everyday life were also mentioned as important. Additionally, most therapists wrote elaborating sentences, stating that they considered individualizing the rehabilitation to the needs of stroke survivors and involving them would be empowering. Participants were also asked to give written feedback on participating in the workshop, and all participants valued it as a great experience. Therapists found it rewarding to get an insight to greater part of the rehabilitation process from the perspectives of stroke survivors and significant others, and to discuss the rehabilitation content with colleagues in other rehabilitation settings.
“It has been rewarding to get knowledge about the experiences from the patient and significant other related to the entire rehabilitation process and to have the opportunity to discuss this with cross-sectoral colleagues” (OT, subacute rehabilitation setting, Funen)
One PT even suggested that more stroke survivors and significant others could have been included to get more perspectives. Stroke survivors and significant others were positively surprised about the opportunities in the apps, and on how their experiences and opinions were valued in the workshops. Also, they appreciated the opportunity to refresh their rehabilitation experiences.
“I was surprised to see the many opportunities in the apps, and I felt that the others listened to what I said” (stroke survivor, Jutland)
Reflections on the first workshops
Data analysis from participants’ inputs on “flip-sheets”, and their prioritization, facilitated the discussion on how to proceed to the next stage of EBCD.
In the workshops all participants’ experiences and views were valued by each other. Bearing in mind that both researchers (respectively trained PT and OT) had not been working in stroke rehabilitation settings for several years, open-ended and elaborating questions during facilitation were used. Questions from the therapists and/or the two facilitators (researchers), such as: “what content would have supported you in this module?”, “would you use this module?” and “if we need to learn from this, what would you suggest be done differently” made it possible to show sincere interest in making stroke rehabilitation better for participants and supported their active engagement. Also, being paired with therapists they knew had a positive effect on sharing their experiences.
To make sure that participants discussed all the modules in both sessions within the time they were given, more facilitation was provided in the workshop on Jutland. Since stroke survivors expressed that attending the workshop for two hours were cognitively fatiguing, extending the time of the workshops was not an option. Prioritizing the modules was less strenuous than anticipated. Despite different perspectives and experiences participants co-constructed their prioritization of each module. For example, if a stroke survivor initially scored a module “not important”, and the significant other explained the reason for a higher prioritization, they could agree on either disagreeing or changing one of the scores when receiving insights to new perspectives. These argumentations between all participants, showed that there existed an open, equal, and respectful collaboration between participants.
Stage 5: Small co-design meetings
Small co-design groups worked on the most relevant modules prior to the second workshop.
Step 1:
Based on participants’ joint priorities, the first author initially worked with the two modules that were prioritized the highest, i.e., the “knowledge” module and “training” module. Relevant evidence-based information was added into “Mit Sygehus” using a “test patient”. Then, access to the app was shared with health professionals from two different sub-acute stroke units, given that longer duration in this rehabilitation setting may give the stroke survivors the time to learn how to use the app. One OT, two PTs, one head therapist, one physician, one speech therapist and one representative from the patient organization “Hjerneskadeforeningen” [in English, The brain Injury Association] (see table 1) gave their feedback to the content in the app. Mostly, the feedback implied having more reader friendly language, being more concise in the language choice, giving more examples and having more information on cognitive deficits. Also, the representative from the patient organization suggested creating links to the municipal “brain coordinators” and the “significant other supervisor” (i.e., a health professional that may support significant others) in the app.
Step 2:
The newly developed recording function in the “training” module was tested in two different stroke rehabilitation settings (subacute stroke unit and municipality rehabilitation) together with two OTs and two PTs. The purpose was to test if the recording function was easy to use for the therapists, to assess the quality of the recordings made and to assess if the time needed to upload the recordings to the patient’s app was acceptable. Both tests revealed the need for smaller adaptions; for example, the duration of the recorded videos was made visible, and all engaged therapists had access to the stroke survivors’ “training” module, to be able to access assigned exercises and adapt content according to current needs of the patient (i.e., person-centred rehabilitation). The app developers and the first author worked with the feedback prior to the second workshop in stage 6. Furthermore, written instructions on how to download the apps “Mit Sygehus” and “Genoptræn.dk”, as well as how to turn on a “read-aloud” function on the mobile phone or tablet were developed, prior to the second workshop.
Step 1 and 2 in stage 5 of the EBCD showed to be valuable for bringing more useable app solutions to the next stage. Especially, the need for written instruction on how to download and use the app solutions were valuable input to make implementation more successful.
Stage 6: celebration event
The last stage of the EBCD process was held as part of the second workshop to recognize the achievements of the co-design phases and the participants taking part (32,36) by introducing the pilot version of the co-designed app solutions. Experiences and feedback were sought from participants at this stage.
Workshop 2:
The second 2-hour workshop was planned and led by the first and last author and carried out in Jutland (n=10) and Funen (n=9). Additionally, an online workshop was held with two therapists due to high workload and COVID-19-related isolation (see table 1). None of the patients and significant others participating in the first workshop (stage 4) were able to attend the second workshop due to other engagements or COVID-19-related isolation. Therefore, the second workshop in Jutland was performed without patients and significant others; however, a representative of the patient organization participated and spoke on behalf of the stroke survivors and significant others.
The program and purpose for the workshop were presented, which was to test all modules in “Mit Sygehus” using participants’ own mobile phones and to give feedback on the written instructions to use the app-solutions. For that reason, this workshop had a more practical hands-on focus regarding the app solutions than the first workshop. The group was divided into two sub-groups. In the workshop on Funen, the patient and significant other were paired with the physiotherapist from the municipality, whom they knew. Both groups received written instructions on how to download and use “Mit Sygehus” and on how to install a “read-aloud”-function on their own mobile phone/tablet. They were instructed to visit all modules in the app solution (see figure 2), except the “training” module, which was to be the next task in the workshop. They were also asked to give feedback on the headings and “sub-headings” chosen for each module. They worked with the task for 30 minutes and, after a 15-minute break, tested the “training” module. Participants were then asked to download “Genoptræn.dk” and make a recording of an exercise using an iPad, upload it to the test-patient’s app and watch the exercises on the app afterwards using their own mobile phones. The participants were asked to give feedback on the written instruction on how to download “Genoptræn.dk” and use of the “training” module.
Participants in stage 6 unanimously found the app solutions relevant to support stroke rehabilitation and empowerment. In particular, the option to read/listen to relevant content in the app when needed by the stroke survivor and/or significant other, and the option for person-centred rehabilitation using the “training” module were mentioned as potentially benefitting stroke rehabilitation.
The second workshop only gave minor adjustment to the content of the app solutions and the written instructions. It was suggested to change the heading “consequences of stroke” to “effects of stroke” since this was perceived by the therapists as less confronting and persistent. Changes to the written instruction was mostly about clarifying the different steps in the instruction by using numbers and circles to highlight.
Reflections on the second workshop
In the workshops all participants’ experiences and views were valued by each other. Questions from the therapists, the app developers or the two facilitators (researchers), such as: “What do you think about this module?”, “Could this module have been of importance in your rehabilitation process?” and “Would you use this function?” supported participants’ active engagement. Statements such as: “This function could have benefitted our rehabilitation” (significant other, workshop 2, Funen) and “This function is really great and smart, I would have liked this in my rehabilitation” (stroke survivor, workshop 2, Funen), also showed how the participants were actively engaged throughout the workshops.