‘I went home not feeling prepared from the outset’: describing the co-design of a technological solution to address gaps in the transition from hospital to home for people with acquired brain injury

Participants

All participants were aged ≥18 years. Participants with ABI (n = 4) experienced their ABI or were discharged from hospital within the previous 5 years, were able to participate in workshop conversations and were not experiencing post-traumatic amnesia or delirium. Three of the participants with ABI had experienced a traumatic brain injury, whereas one had experienced a stroke. No parameters were placed around the severity of the ABI; however, most participants’ ABIs were of a moderate to severe nature. Health professionals (n = 3) had at least 12 months of experience working in ABI rehabilitation and were from occupational therapy (n = 2) or physiotherapy (n = 1) disciplines. Technology designers (n = 2) had experience in relevant technologies (such as augmented or virtual reality, software development etc.) and were employees at the same university as members of the research team. Technology designers were chosen based on three characteristics: (1) industry experience to ensure a practical and realistic approach to the design process; (2) exposure to emerging technologies, such as augmented reality, to ensure solutions had the opportunity to introduce innovative and novel technologies; and (3) academic experience to ensure they were familiar and comfortable with the constraints and expectations of a research project. Technology designers had a mix of industry and academic experience. One of the technology designers had worked as a UX/UI designer in private industry and for the university. The other was a PhD student who had been exploring design techniques for augmented reality solutions, and had worked as a UX designer for 6 years with experience in multiple fields including government, higher education, primary industries and e-commerce, and across multiple platforms (websites, intranets, mobile applications, business software solutions, and augmented and virtual reality). Technology designers used human-centred design, design thinking and participatory design approaches in their work.

Participants with ABI were recruited via the specialist ABI rehabilitation outpatient, transitional or outreach services of a local hospital and health service by their treating health professionals, as well as through advertisements distributed via professional networks and the research centre’s social media accounts. Health professionals provided the lead researcher with the contact details of interested potential participants with ABI who were deemed suitable to participate in the workshop by the health professional. Following this, the lead researcher contacted participants, providing them with further information, the participant information and consent form (PICF), and the opportunity to ask questions before they provided informed consent. Prior to the start of workshops, a research assistant (RB), who was an experienced occupational therapist, provided another overview of the PICF and obtained written consent from each participant, answering any questions that they had. Although attempts were made to recruit support people, no support people were able to be recruited prior to the workshops. Two of the participants with ABI chose to have their paid support workers present during the co-design workshops. These support workers provided written informed consent prior to the start of workshops. Health professionals within the same health service were informed about the research via emails, in-services, professional networks and the research centre’s social media accounts. Interested health professionals contacted the research team via email, following this they were provided a PICF and an opportunity to ask further questions, prior to providing informed consent. Technology designers were recruited through professional networks, with the lead researcher who did not have a prior working relationship with them providing them with a PICF and an opportunity to ask further questions, prior to providing informed consent.

Procedure

Following the design thinking process, this study was structured as a series of three cycles to empathise and define, ideate, and prototype. The final stage of the design thinking process (test) will be the focus of future work. The same participants with ABI, as well as their support people, health professionals with experience in ABI, technology designers and researchers (from occupational therapy, information and communication technology and engineering), were involved throughout the process, with the only exceptions being one person with ABI not being able to attend the first workshop, and a change to one of the health professional participants during the final workshop due to availability.

The co-design workshops included a combination of large group and small group activities to explore the topics individually and as a group, while applying principles to facilitate power-sharing of experiences by all attendees. Small groups (or teams) were formed with at least one person from each stakeholder group. Powerpoint slides were used to facilitate discussions, and data were collected using audio recording devices. Participants were also encouraged to share or capture their thoughts using pens, permanent markers, post-it notes and construction paper on each table. Members of the research team sat within group discussions, with the aim to facilitate inclusion of thoughts and perspectives from all participants.

The focus of Cycle 1 was to identify and define the needs experienced by people with ABI upon their return home after inpatient rehabilitation. Cycle 2 involved two teams, containing at least one person per stakeholder group, to ideate potential solutions. Then, over the next 6 weeks, the technology designer from each team created the prototype of a solution for their team. Finally, participants reconvened for Cycle 3, and the technology designers presented their solutions to the entire group to gather feedback. Workshops were co-facilitated by members of the research team. Workshops were limited to 2 h in duration, to minimise effects of fatigue in participants with ABI. Workshops were audio recorded, transcribed verbatim and field notes were taken by the research team.

At the end of the last workshop, participants were asked to complete feedback forms about their experience participating in the co-design process. The open-ended questions included whether participants felt they had time to present their thoughts (where they also indicated whether there was too much, just right or too little time), felt like they were valued and heard (where they were asked to indicate whether they strongly agreed, agreed, disagreed or strongly disagreed with the statement), what they liked best and least, any suggestions, and other comments.

Participant needs were accommodated throughout the research project. Two participants experienced expressive aphasia and were assisted by a member of the research team with an occupational therapy background to ensure their opinions were shared. Additionally, to ensure participants were able to receive information in a format that was best for them and to enhance the ability to keep track of discussions, summaries were presented to participants in the form of letters between workshops and slides during workshops. Designated scribes also wrote key discussion points on construction paper to refer back to during the workshops. These strategies appeared to be beneficial to the participants in the current research project. By having participants reflect on their experience directly after the final workshop, they were able to describe their co-design experiences without reported difficulty.

Data analysis

Summaries of the discussions, ideas and priorities were presented by the research team at the end of each workshop as a form of member checking. These were then mapped against the transcripts of recordings by the lead researcher using directed content analysis (Hsieh and Shannon 2005) to confirm findings and ensure that no major discussions, ideas or priorities were missing. This involved the lead researcher reading the transcripts line by line and coding them according to the main findings discussed at the end of the relevant workshop. The previous and any emergent findings were discussed and incorporated into the summaries that were shared with the participants via a letter prior to the following workshop. At the start of the following workshop, participants were provided with the opportunity to discuss any deviations from the summaries provided.

Workshop 1

The aim of the first workshop was to identify the issues people with ABI and their support network experience during the transition home from inpatient rehabilitation. After initial introductions, the following question was posed to participants, ‘what things could you do easily in hospital that were difficult when you returned home?’. Participants discussed this within two small groups, before reporting back to the larger group. The question of ‘what things in hospital do you feel helped you most prepare for home?’ was then posed, which was again discussed in smaller groups before a larger group discussion. Following this, participants were asked to identify which challenges they believed should be prioritised. By the end of the workshop, the following needs were articulated: (1) transparency in communication, (2) setting expectations – things are harder and take longer, (3) education for family and friends, and (4) replicating home scenarios. The participants then voted on these priorities. This resulted in transparency in communication receiving one vote; setting expectations receiving no votes; education for family and friends receiving three votes, and replicating home scenarios receiving one vote. Please see Fig. 1 for examples of how brainstorming and voting were completed.

Fig. 1.

Workshops.

The research team reflected immediately after the workshop, identifying that the participants with ABI appeared fatigued at the end of the workshop, and may have been simply identifying and prioritising the issue most recently discussed prior to voting; that is, ‘Education for family and friends’. Findings from the directed content analysis following the workshop supported this observation, identifying a range of needs that had not been captured or considered in the prioritisation activity. Refer to Table 1 to see the results of analysis, representing both the needs included in the final activity and those discussed earlier in the workshop. The four main findings were: (1) difficulties experienced on return to home, (2) hospital experiences that are helpful, but do not fully prepare for the transition home, (3) communication, and (4) goal setting. The summary was sent to participants, with an indication that an additional workshop would be added to enable participants to clarify and reflect on discussions, and determine priorities when not impacted by fatigue.

Table 1.Workshop 1 findings.

Difficulties experienced on return to home		Hospital experiences that are helpful, but don’t fully prepare for the transition home
Loss of structure in daily life. Issues with memory, fatigue, reading, driving, budgeting, grocery shopping, cleaning, meal preparation & motivation. Issues become a reality only after returning home.		‘Real-life’ scenarios are difficult to predict. ‘Free-time’ and activities that replicate home life are helpful in preparing for transition home. A ‘plateau’ in progress is experienced in hospital.
P1: …Um, I suppose because when you’re in hospital everything’s regimented so much. You know, you’re told, well dinner is a certain time…It’s regimented certain times. Okay. You’ve got a board, it says this is what time your OT, this is what time your physio, this is what time speech pathology, and when you get home that doesn’t happen obviously…for me personally and understanding that I’ll live by myself…I had no one to push me to do things. And so I, I tend to get into a bit of a rut once that’s the situation…. I still have mates. But I must admit, once you have a brain injury, your expansion of friends used to be maybe that big. It does change significantly.		P3: I think when I went to the – away for the weekend, I feel it was just to catch up with people. If I'd done it the other way around, I feel it would be good to test yourself to see if you go out there then can – can – can you do it? You know what I mean? Like, do you need some help? Do you need nobody? You know, so when you go back to the hospital, then you can try doing again. So professional people can see rather than, um, I'm going to try, yeah, I'm fine, this is going to be easy. You know? When actually you're not. You know what I mean? Just tell you like you're doing good or you're halfway there or whatever. I don't think we've done that. I think it was just a catch up.
P4: One of the main things I found was meals, because all the meals were already prepared obviously in hospital. But having to shop for everything and then cook it. And because before my injury, I was pretty confident in the kitchen and I – I think I expected that all to come back. I didn’t realise that I needed so much help with all that sort of stuff.		P4: …the free time was important for me when I could do things like my own washing. So having that sort of at home stuff in the hospital or in the rehab unit…

Communication		Goal setting
Communication barriers between health professionals. Need for transparent communication. Desire for family & friends to understand the realities of living with ABI.		Personalisation of rehabilitation: need to be able to ‘see’ your goal.
P3: …when you go home from the hospital – from the brain injury, you go back to your family, you go back to your friends…sometimes they don't understand what has actually happened to you, and your personality, who you are might change…		HP2: Yeah. I think that whole goal setting process would help the team to get a better understanding of where you want to be and who you were before and where you would like to aim to. So – and that comes from knowing you and your family and what they said about how things were before the situations at home. Your interests.
HP2: Um, the environment in the ward sometimes has its challenges with all the therapy services being very separate. Um, so physio has a separate gym from OT, which is outside of speech. So we don't have that informal interaction or perhaps group work, which we could work towards…		P4: I think they quite a bit have tried to get me to do quite a bit of scheduling in my therapy. And I – I know I struggled with it. To do it in real life, is a much different thing 'cause I thought I'm never going to organise all these sort of things, because there seem to be really difficult scenarios and I thought, well, I'm never going to have to do that. All I have to do is make a bit of dinner. You know? My kids are older, you know, I don't have to worry about all this stuff that's in this scenario.
P4: …But if I could see the overall process, like you go to [inpatient rehabilitation] and this might happen and that might happen. And then [transitional rehabilitation], [community brain injury service] and [disability funding service], what's all the differences between all those things or where the funding's coming from. And it was really confusing. I think once it got to the [disability funding service], nobody knew what to do.

Workshop 2

Workshop 2 involved facilitated discussion of the needs and priorities identified in Workshop 1. At the start of the workshop, findings from the directed content analysis (Table 1) were presented to participants, and time allowed for clarification and to consider priorities. In addition, participants were asked to consider the following during the prioritisation of needs activity at the end of the workshop: the prioritised need must be amendable to a technological solution; and the technological solution is to be introduced to address the need in the inpatient rehabilitation setting and support preparation for return to home. At the end of Workshop 2, the following priorities were identified: (1) the technology should enable the treating team to understand what the reality of home is for the person with ABI, (2) the technology should help family members understand what the person with ABI’s new reality is, (3) the technology should help people with ABI to compare their understanding of how their recovery is going with the reality of what the return home will be like, and (4) the technology should be an ‘all in one’ solution that addresses the individual’s goals, is personalised to the individual and helps to create a shared understanding of reality. When conducting the directed content analysis, it was noted that priorities 1–3 were sub-themes of an overarching need for the technological solution to provide ‘a shared understanding’. Therefore, findings are presented in Table 2 as two main themes, with the priorities retained as subthemes.

Table 2.Workshop 2 findings.

A shared understanding		An all-in-one solution
Technology needs to enable the treating team to understand what the reality of home is for the person with ABI. Technology needs to help family members understand what the person with ABI’s new reality is. Technology needs to help people with ABI to compare their understanding of their recovery with the reality of returning home.		Inclusion of individual’s goals. Personalised. Creation of a shared reality.
HP1: …one of the difficulties we have is having a new inpatient coming into the inpatient rehab unit is all those questions, and asking all that information about to try and find out what is their reality, what was their life like prior to the brain injury? What is that family support network? What does the house look like? What demands are going to be placed on them when they go back home? So to maybe have some sort of representation or snapshots and pictures. And this is me, this is who I am, who I want to be, what I would like to get back to… I think it would be nice to take, or to give the family and that patient some, more informal questions to seek that information about who they were as a person, who they want to be leaving hospital, and their goals that are important to them, and that way we can all focus and target the therapies to meet more personalised needs and care.		P1: …You know, have, like a little page, that is, you know about your your goals that could be updated if needed. And then also able to actually check them off. And having this in hospital….you’re taught how to do this in the hospital will benefit in the sense that it will highlight problems and then you are educated.
P1: …Having or not having my friends and family, you know, not understanding…the difficulties and I think it’s yeah a lot due to them not having the education and stuff like I personally like read a lot like, you know, I’ve had that the book from [brain injury organisation] and I read that all before I left and that made I feel like that made it more frustrating for me because it’s like it’s like all my issues are like written down in here like you could read them, but like that’s what most people want to do, sort of thing like…Not trying to say that they’re bad people, just that like…That’s a lot of reading.		P3: Especially with family thing, you know, I mean, they need to understand what the goal is, what the plan is. You know, I mean, so. Yeah, that’s that’s the biggest thing.
P4: …I found that my expectation of myself was a lot higher than what was the reality when I got home, I thought I could manage all my finances and stuff. I was really upset when people were trying to get in, you know, going into my accounts and trying to manage my, yeah and everything. You know, why are they doing this? This is my personal stuff. Without realising I actually needed the help.		P4: Like, feel like the rehab journey itself would lend itself to some kind of flow to show what is, what are the important parts of the journey? What you’ll be going through, who your contacts might be before you go? Because I didn’t know anything about. I didn’t realise that the support coordinator was such an invaluable person that there’s someone who you rely on quite a bit drew a line…
		HP3: But sounds like something that you hold as opposed to like your medical record that the hospital has.

Workshop 3

During Workshop 3, the focus switched to the technology solution, and what this could ‘look’ like and what it could contain. The participants were presented with the identified priorities from the previous workshop and provided with the following ‘blue sky’ prompt: if anything were possible, what would be the ideal solution(s). Recognising that the findings of Workshop 2 and the blue sky thinking of possibilities were conducive to multiple functionality requirements, participants were then asked: how could we do this right now?; what features are most important?; what can be left for now?; and what trade-offs can be made?

Participants were split into two groups during this workshop, with a technology designer allocated to each group. Participants then worked together to identify the priorities for the technology solution and the type of technology that could be used. Both groups identified that the technology should take the form of a smart device application (app) that would be ‘owned’ by the individual with ABI, they would start to use it during their inpatient stay, and that it should explore the possibility of supporting communication and information sharing with the healthcare team. The identified priorities for the app were quite similar between the groups. The first group identified that the prioritised features that could create a shared understanding and be an all-in-one solution were: (1) goal setting, (2) information about the support team, (3) planning, and (4) educational resources. The second group identified that the prioritised features were: (1) information about the support team, (2) educational resources, and (3) the ability to share information about life before the ABI. Please see Table 3 for how these priorities were supported by participants.

Table 3.Workshop 3 findings.

Prototype 1 foci		Prototype 2 foci
Goal setting Understanding the support team Planning Education resources		Understanding the support team Education resources Sharing information about life before ABI
P1: …a Portal they can use to learn about brain injuries…		P2: As much relevant information about myself that was pretty ambiguous when I was in hospital. Specific information.
HP2: I think certainly could be used really nicely with the goal setting tool, so that you identify the issues or problems with those sorts of questions and matching. Or mismatching opinions from the different family members and the patient. And then coming up with some goal to work towards support discharge home… And then perhaps to achieve that goal might be recorded by a photo or a video of your progress. These logical tracking of how you’re going with the week and then the patient and family can go after ‘you were doing this 3 weeks ago and now you’re doing this’… Sometimes it’s hard for people to recognise change and improvement or family that aren’t in therapy sessions to see anything evolve.		P2: …Definitely there was false hope, there was, for me anyway. Certainly was for me…I think the patient should be given more factual information regarding the rehabilitation outcomes. I certainly think that’s the case.
HP2: We haven’t really mentioned around the use of some sort of planning or calendar to device or aid… a calendar that’s accessible and easy to set up and use, and in control by the patient and the support people, and the therapists can guide that planning and process in hospital to then use the same aid into the community.		HP1: So I think as well as when you get this information about what I think it’s and what life was like before. Then it’s working to build and and providing information about what that might look like or when you go home.
HP2: I think from a rehab staff point of view our biggest challenge is understanding who you are and what your situation was prior to the injury and where you’re hoping to get back way to, so a comprehensive understanding in one place of who you are, where you live, who you associate with, who your family is, your support network, where you go to and from, what your work was like. So that background of who you were before really helps us to then go ‘these should be your goals’ and developing those conversations.		HP1: Yeah, I guess the thing that they could be providing is the support contacts, and that would include those resources and hopefully if the clinician has a good picture of the person they would work out which is an appropriate resource to provide. So not everybody, I wouldn’t provide a [Brain Injury Organisation] book to everybody. Yeah, because it’s not appropriate for a lot of people. They can’t actually read the information. They get very overwhelmed. I might actually take specific pages out of that. Or other resources that are just relevant to that person. So I might give them links to, here’s the section on communication change. Here’s the section on….
TD2: [summarising team’s discussion]…most likely on the phone or tablet where the patient can kind of answer questions and like gradually build up their profile… But the team can also answer some of those things, and they can kind of compare and work out where the goals lie and or maybe where there might need to be some work. A lot about being able to share photos and videos, or the living situation, but also progress towards goals and being able to save that in a safe place where it can be accessible by the whole team and not get lost if your phone gets lost kind of thing. Yeah, just being able to understand the community and the local area and that personalisation factor for the person so that everyone on the team is on the same page… then we started talking about some more accessibility factors like being able to fully customise how you can, the font size, the colours, that kind of thing, so that yeah, everyone can access this properly.		TD1: [summarising team’s discussion] Yeah. OK. So the main thing we’ve been talking about at the moment is. I think there’s kind of two core things. It’s obviously that discharge process and making sure that we have access to information that is both relevant to you and accurate and not just optimistic, but also making sure that you can revisit it as much as you need to rather than it being a one off pop up and then you never hear about again. And the other thing is kind of trying to build that context with the entire team while we’re in hospital still to ensure that when we’re kind of keeping track of our journey, hearing about our milestones, getting told that we’re doing a very good job. That we understand how that sits in the context of our actual life at the end of the day…

Interface	Interface
Customisability	Customisability
P1: …it does need a lot of customization ability in terms of you know like you know even font size, colours. Those two things in particular. Even just things like do more circle boxes as opposed to pointy as it can put you off …	P2: …Most people have mobile phones. I think the most basic form of technology should be in the format of the messages sent to every patient who is released from hospital after their brain injury. Going a little bit further to that, every patient when they released you get a discharge summary, OK, which is in format written format. So I think it’s also applicable with every patient should receive a text message when they’re released from hospital sign as a discharge summary.
HP2: I think certainly some of the educational websites like the [National Foundation] have heaps of different formats for providing education, and different formats for reading difficulties and decreasing font size and simplifying information. So instead of reinventing the wheel, you can have links to key places of information instead of creating everything from scratch.	HP1: You need options to have it in whatever form that people, yeah. So some people prefer to read, but a lot of people, especially with brain injury, actually can’t read, so they need a visual.
HP2: …there might need to be a little bit of limitation around perhaps an external medical person can see and access or support worker can access or more what’s relevant to them and their role so that they don’t get to see everything you’ve declared…So it’s about privacy.
P1: That’s a good point, no password please.
HP2: We also have to think about some of our patients, our visual problems or speech and language problems, so that they might not be able to read from a screen or a phone?…

Support
P1: …that’s why this needs to be in the hospital like they have to be taught about this in the hospital because that’s when, like you got it. Regardless of if you have a history of being good with tech before your brain injury, you know…like I’m still pretty good. But it’s still like hard to get my head around this. And so having that, I guess intensive sort of training to be able to effectively use the app is really important and then you know easiest way to do that is, while you’re in hospital with the professionals and stuff. And then if there are particular things that you are struggling with using that app and those issues can be addressed at the time, so yes.
HP2: I think it definitely has to be a supervised, slowly introduced thing…It’s got to be something that’s introduced by the team within their area, slowly, not overwhelmingly. Maybe there’s something very simple to start with and it opens up…So it’s not all these boxes day one, it’s a gradual gathering your information that’s not overwhelming or consuming that there’s multiple sources of that information to go in there. So that it’s not down to the patient, it’s a team approach to it.

Workshop 4

The final workshop started with a reminder about the potential solutions discussed in the previous workshop, followed by the technology designers presenting the wireframes of their apps to participants (see Figs 2–4). By presenting the wireframes of the two potential technology solutions to the entire group, participants were able to provide general feedback in terms of their preferred layout, components and interface, which have been summarised in Table 4. The following questions were presented to guide feedback: what works?; what doesn’t work?; what is missing or could be better?; what is unclear? Overall, participants wanted the app to be customisable, intuitive, and enable them to access information, goals, plans and progress.

Fig. 2.

Prototype 1.

Fig. 3.

Prototype 2 – person with ABI view.

Fig. 4.

Prototype 2 – health professional view.

Feedback of the co-design process

Following the final co-design workshop, participants were asked to provide written feedback about their experience in the workshops through an anonymous form. Open responses to feedback questions are provided in Table 5. When asked about the amount of time provided to present their thoughts, all eight participants identified that the amount of time provided was ‘just right’. Participants were asked to rate whether they felt that their contributions were valued and heard on a 4-point scale from ‘strongly agree’ to ‘strongly disagree’. Three participants answered ‘strongly agree’ and the other five answered ‘agree’. When asked about what they liked the most about the workshop, participants appeared to value the opportunity to connect with others who had experienced a brain injury and health professionals working in the field. They also reflected on the welcoming nature of the workshops and payment for participation. When asked what they liked the least about the workshops, participants discussed pragmatical aspects that will be important considerations for future research. For instance, the timing of the workshops, location of the workshops and lack of catering provided were aspects highlighted. Similarly, when asked about what could be changed or improved for further workshops, pragmatical recommendations were provided, such as ‘stretches in breaks’ and ‘longer session.’ Finally, when asked for any further reflections, participants indicated that they had appreciated the opportunity to participate in the workshops.

Limitations and future directions

When engaging in the co-design of technological solutions, the end product is often dependent on the skills and expertise of the technology designers and developers involved. Consequently, the choice of the technology platform and conventions may have been inadvertently influenced by the technology designers involved. Additionally, people with ABI, their support people, and health professionals may also have been more familiar with smart devices and apps than other forms of technology, which may have influenced what they perceived could be possible in a technology solution. Although some of the participants in the current project experienced physical difficulties, the impact of their ABI was most significantly experienced in the form of cognitive and sensory difficulties. This consequently had an impact on the type of content that was prioritised for the smart device applications, as well as preferences for the presentation of content. Due to difficulties with recruiting participants, equity and diversity targets were not included in recruitment procedures. Consequently, people with differing gender identities, races, income statuses and geographical locations than those that participated in the project may have different preferences and needs in relation to technology.

Although this study was able to provide insight into the co-design process of developing a prototype of a technology solution for people with ABI, including what was desired in such a solution, it was unable to demonstrate the efficacy of the prototype developed. There is a lack of evidence supporting the efficacy of such technologies with people with ABI, and this is something that is needed in future studies (Kettlewell et al. 2019). Consequently, information provided during the co-design process has been used to guide further development of a smart device app, based on the preferred prototype that was presented. Additionally, perceptions related to cost were not explored in the current study, with previous studies indicating that people with ABI would not be willing to pay for such an app (Kettlewell et al. 2018). This has implications for further development of the prototype and implementation into practice.