Rehabilitation via HOMe-Based gaming exercise for the Upper limb post Stroke (RHOMBUS): a qualitative analysis of participants experience

Participant characteristics are summarised in table 1. The average interview time was 63 min (range 28–88 min).

Summary of themes

Five themes were developed from the data, summarised in table 2. Findings offer an insight into the range of participants’ views and a sense of convergence and divergence. Exemplar participant quotes are provided with details of their Fugl-Meyer Assessment Upper Extremity (FMA-UE) score, amount of device use to add context and transcript page and line numbers.

Table 2

Themes and subthemes

Theme 1. Trial enrolment: influencing factors

All participants regardless of the severity of their upper limb impairment enrolled in the trial hoping to improve their upper limb recovery. Most described under-resourced and inadequate rehabilitation services for the upper limb following stroke. In their experience, time-limited rehabilitation efforts had been directed at achieving functional gait at the expense of upper limb training and recovery.

P24 Linda (FMA-UE 36, low user): [acute setting] I was just sitting there looking at the walls (33, 1515). […] I had plenty of time because I was, I was there, sitting there, thinking, ‘what can I do to move? What can I do to move my hands and that?’, and there was very little help, very little help (34, 1544–6).

Positive reports of acute rehabilitation were scarce. Likewise, community therapy was described as usually time limited and mainly focused on functional gait. Just one participant described having publicly funded upper limb rehabilitation in the community. A sense of disappointment about the lack of poststroke rehabilitation services offered in acute and community settings pervaded these accounts.

Many of these stroke survivors had adapted or created their own exercise programmes and sought out alternative interventions and services, such as electrical stimulation, to fill perceived gaps in service provision. Where described, these exercises appeared to be non-specific, low intensity, self-devised and poorly structured.

P5 Pam (FMA-UE 29, high user): …I don’t do much… umm, yeah, the turning, having my fingers out straight and bending back […] and trying to straighten out my arm, move it round, okay, umm, yeah, and things like that (9, 350–61).

Home exercise programmes were hard to sustain for all but the most determined participants without ongoing feedback and encouragement.

Theme 2. Perceptions of pretrial preparation, in-trial support and communication

Participants reported enough information was provided about the study before enrolment. All participants agreed the training about the games and using the device was thorough and delivered at the right level for their individual technical ability and experience. The amount and type of training was varied for individual needs. At the end of the training, participants reported having enough confidence to start playing the games.

P16 Ann (FMA-UE 31, high user): [the research assistant] went through everything. He went through all the games as well, which was good, so that helped. So, it just gives you confidence and reassurance in what you’re doing (7, 266–8). They were all pretty, you know, self-explanatory in the end but it was good to go through it (7, 274–8).

Participants and /or their carers were satisfied with the level of support offered during the trial and the ease at which they could contact the research team if help was needed. The list of contact details offered reassurance that help was readily available.

Eight participants either needed no help with the device (P1, P2, P17, P22) or just advice or support from a family member for example, to charge the device (P16), or to call the research team for help (P5, P6, P16, P24). In this group of eight, upper limb impairment ranged from mild to moderately severe (FMA-UE 18–63) as defined by Hoonhorst et al.34 Seven participants needed physical assistance from family members to set up the device, put the device on their hand, or secure the straps.

P19 Sam (FMA-UE 35, high user): One of my [family members] told me [how to put my hand in]. So, I was alright then (11, 471). […] definitely useful to have somebody [family member] around in case you don’t use it right (36, 1684–5).

Both participants with severe impairment (P23 FMA-UE 8, low user; P28 FMA-UE 8, high user) reported needing the most physical assistance which may have contributed to P23 Sue being a low user; however, it was not a barrier to engagement for P28 Terry who was a high user. While people with a severe impairment may need help using the device, as indicated in our findings some people with moderate or mild impairment may also need assistance at least when they first start to use the device.

Theme 3. Device usability and comfort

All participants but one (P23 FMA-UE 8, low user) were able to use the NeuroBall device with relative ease. Nevertheless, some issues were raised. Difficulty getting the fingers or thumb into the device due to spasms or stiffness hampered the initial set-up for some participants.

P1 Iris (FMA-UE 18, low user): Well it’s hard to get the [fingers in] … ‘Cos first of all you have to try and push it down … And then you get some spasms in your fingers, so you have to prise your fingers out (13, 544–7).

Iris reported it could take up to 8 minutes to get the hand into the device. For some participants fitting improved with practice (P5, P19, P20, P22, P24); for others, it remained a tricky and time-consuming process throughout the trial (P1, P2, P6, P16).

The straps and hooks, which secure the hand to the NeuroBall and the NeuroBall to its base to aid calibration, were described as a bit fiddly, and tricky to use with only one hand (P1, P2, P3, P5, P6, P16, P17, P19, P22, P23, P25, P26, P27, P28). However, participants described getting better at this with practice or simply avoiding using the hooks.

The majority of participants (n=14) experienced varying issues with the equipment, most of which were related to the app which were resolved through a basic restart. Occasionally, problems with the NeuroBall device itself arose.

P3 Ray (FMA-UE 57, high user): […] the first couple of weeks or three weeks very good, but then of course towards the end, the last couple of weeks, umm, that middle finger, something broke inside. I hadn’t dropped the ball in any way […] obviously there’s a weak link in there (14, 617–23).

Most technical problems were resolved with advice from the research therapists or engineers if needed. The most common problem reported with the NeuroBall was damaged, broken or ineffective straps which secure the hand to the device; however, resolutions were always found to allow participants to continue with their training.

Theme 4. Factors motivating persistence

Participants used the VR platform for a median of 17.4 hours over 7 weeks.29 Several reasons were highlighted that encouraged this engagement.

The majority of participants (n=12) found the computer tablet’s touch screen easy to navigate.

P26 Mike (FMA-UE 12, high user): Yeah, got the handle of it pretty quickly […] I was able to, to control it. […] Yeah, it was easy enough to, to, to select the games I needed to, yeah, yeah (44, 2044–52).

While three participants struggled initially, difficulties with navigation were quickly overcome and were not related to previous touch screen experience.

Most participants liked the therapeutic games and enjoyed playing them. The most popular games were Scuba Diving (n=9), Holidays Jogger (n=9), Space Shooter (n=8) and Pong Goal (n=7). Preferred games either encouraged specific movements or activated specific actions, were associated with previous hobbies or interests, offered the right level of challenge or were fun and absorbing. An appropriate level of challenge was somewhat limited for those with mild impairments and resulted in limited motivation and below-average gameplay. This was not seen in those with moderate to severe impairment, despite some reporting that they experienced monotony. A summary of all game preferences (likes and dislikes) is reported in online supplemental material 2.

Supplemental material

Most participants found the incentives, rewards, encouragement and feedback built into the VR platform and the games to be positive features. Reassuring messages encouraged persistence or motivated participants to improve their score or to repeat a good performance.

P24 Linda (FMA-UE 36, low user): [Ten in a row! Well done!] Oh that was encouraging, that was encouraging it all […] it was very encouraging […] It was making want to do more and more […] because it was encouraging and it was speeding me on to do it (26, 1185–97).

Likewise, participants commented on the inherent competition created by the leaderboard and how that spurred them on to achieve more. Other objective feedback (eg, game difficulty level, number of repetitions and minutes played) was also well received and used as a target or benchmark for current or future performance and effort.

P19 Sam (FMA-UE 35, high user): I, umm, enjoyed playing on it and I always attempted to go a little bit longer. If I’d done thirty minutes, next day thirty-five minutes – next day forty minutes (27, 1201–3).

Training that focused on hand movement and action repetition were also cited as factors in persistence. Some motivators related to enjoyment, such as playing games connected to previous interests (eg, football, playing space invaders as a child) and finding gaming more interesting and purposeful than prescribed home exercise programmes. Other motivators were logistical, such as having a structured practice schedule and set amount of time to practise, being able to play at home and having the flexibility to plan practice around daily life.

P22 Bal (FMA-UE 33, high user): I liked the fact that, because it was a set period and, er, I was motivated to do it every day, er, and I set aside time to do the exercises regularly […] The fact that it was at home, I could plan my day around… all my exercises around my other activities. […] So that was very useful […] the fact we can do it at home (16, 690–704).

Several factors were identified which could have further increased motivation to use the platform such as a wider range of games and greater control over the level of difficulty.

P22 Bal (FMA-UE 33, high user): If there was a bit more variety or slightly different games, or even the games you could adjust so that, er, it was, er, slightly different, then I think it might not be so boring (15, 656–8). […] because of the lack of variety, er, I found them a bit boring after initial excitement (17, 738–9).

Theme 5. Perceived effectiveness of the intervention

The majority of participants reported some beneficial effects such as a perceived reduction in stiffness, lower odds of having shoulder pain and improved range of movement in the shoulder, elbow and wrist.29

P27 Elaine (FMA-UE 15, low user): Well, it…it just feels more relaxed and…it doesn’t…it doesn’t hurt so much. I feel more…like now I am using…actually using my arm to do things, more than my…just swinging my shoulder round (14, 627–9). I think it’s improved the strength in that left arm (16, 708).

Improved function for tasks such as dressing and washing up was reported by two participants. For others, playing the games prompted them to try to use the upper limb more in everyday life.

P20 John (FMA-UE 58, high user): I think what it might have done was make me think more carefully about things where I can use my left hand, I thought to myself, ‘I’m not using this left hand enough.’ So, when I can I tend to use it (18, 779–81).

This positive linking between practice and functional use may have increased psychological investment in the potential of the game to have positive outcomes, which in turn may have increased persistence in training. Playing enjoyable and immersive games focused attention on the game rather than the purpose of the game (ie, repetitive upper limb exercise). When compared with conventional exercise programmes, captivating, interesting and enjoyable games have sustained longer training periods.7 Seven participants reported gaming had a positive effect on their motivation to do their previous home exercise programmes or made the exercises more manageable.

P13 Rose (Steve’s (FMA-UE 16, high user) wife): […] he seemed to be a lot more motivated to do the […] exercises after the NeuroBall, I think. […] ‘Cos you’ve sort of got into the routine of doing quite a lot so then you sort of have carried that on. So yeah, it’s quite good (3, 81–92).

Poor outcomes were attributed to the trial not being long enough for people with more severe impairment who believed a longer trial was needed to deliver positive outcomes.

P26 Mike (FMA-UE 12, high user): I’ll go back to the length of time, the time was, was kind of limited, but my arm and the, the, the damage done to it by the stroke, umm, it seems just something that needs a more prolonged piece of work (46, 2135–7). I needed more prolonged work. If… I might have seen a lot, a lot more difference (46, 2146).

In-game difficulty levels were not perceived to be high enough to drive improvements for those with mild impairment. Participants also suggested the complex movement of the wrist and hand could not be retrained sufficiently by the limited number of movement options offered by the device.

P19 Sam (FMA-UE 35, high user): I don’t think it twists your hand enough (16, 719). I get to the limit and then the machine doesn’t make it any better (17, 724–5).

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