Home-based self-training: A qualitative exploration of the experiences of individuals with chronic-stroke

Participants

Participants were community-dwelling adults with chronic-stroke (beyond 6 months post-stroke ¹⁵ ). The inclusion criteria for this study were similar to the criteria for the randomized controlled trial: 1) Six to 36 months post-stroke, 2) living with a family member or caregiver, 3) moderate to mild weakness of the affected upper-extremity (score 15 to 55 out of a maximum of 66 points on the Fugl-Meyer Motor Assessment) which assesses motor function of the upper-extremity post-stroke, ¹⁶ 4) without a significant cognitive deficit (Mini-Mental State Examination score >20), ¹⁷ and 5) can ambulate independently (with or without an aid). Participants with epilepsy or other neurological conditions, as well as those who were medically unstable (as determined by their family physician), were excluded.

Quantitative tools

In addition to the Fugl-Meyer Assessment and the Mini-Mental State Examination, The Functional Independence Measure ¹⁸ was also used to assess independence in 18 activities of basic living, such as eating and dressing. Using an interview format ¹⁹ each activity was rated from 1 (total dependent) to 7 (independence). Total score ranges from 18 to 126 points; higher scores indicate more independence. Demographic information (age, sex, years of education) was collected from all participants, as well as information about the stroke (date, side, and type).

Qualitative tools

A qualitative interview guide with open-ended questions (Supplementary 1) was developed by author DR, who is an experienced occupational therapist with expertise in neurological rehabilitation and qualitative research. The guide was constructed to better understand the participants’ experience following the 5-week self-training intervention. Questions inquired about the integration of self-training into their daily routines, motivation to consistently perform (or not perform) the self-training, emotional responses during and after the self-training, and perceived impact on upper-extremity performance and use.

Procedure

As part of the randomized controlled trial, ¹³ participants in both groups received a home-visit by an occupational therapist who taught them to perform the self-training. Participants were requested to perform the self-training for 1 hour a day for 5 weeks. Participants were asked to log their daily self-training and to send it to the occupational therapist once a week. The videogame group received a videogame console, which was connected to their television and was taught to play games as described in the illustrated manual. Three to five games were selected for each participant by the occupational therapist based on therapeutic relevance. Participants could decide which games to play. The GRASP group received a printed manual and a bag of equipment and was taught to perform different activities (such as buttoning, pouring, and lifting using everyday items such as a towel, a ball, and pegs). After 2 weeks, the occupational therapist conducted another home-visit for all participants, to confirm that the exercises were performed as instructed, address challenges and provide additional guidance as needed. The self-training intervention lasted for 5-weeks but the RCT included another follow-up session, 4-weeks later. For this period, participants were asked to keep the equipment and were told that the continuation of the self-training was optional.

Participants were interviewed immediately following the 5-week intervention so their experiences would be vivid. The interviews were carried out at the rehabilitation center at the end of the post assessment session by one of two occupational therapists, with experience in stroke rehabilitation, who were trained by DR, and were not involved in the delivery of the intervention or in the RCT. All participants provided written consent for the interview to be audiotaped. In cases where participants had mild speech difficulties, a family member joined the interview and assisted in communication.

Quantitative data analysis

Descriptive statistics were performed using SPSS 27. Owing to the small sample, each participant is presented separately, and data are presented as median and interquartile range (IQR).

Qualitative data analysis

The qualitative data were analyzed by the authors [KL, YBK, RM, CL, DR] based on the phenomenological method, ¹⁴ which is suitable for exploring a phenomenon (self-training at home) through the subjective experiences of adults with chronic-stroke. The analysis team included PhD-level occupational therapists (KL, DR), PhD students in occupational therapy (YBK, RM), and a PhD-level nurse (CL); all had training and experience in qualitative research.

Each transcript was reviewed for accuracy by at least two authors. The analysis (which was performed manually) included coding and categorizing the content to identify main themes and subthemes that encompassed factors related to self-training. The authors used open coding to identify key elements, followed by axial coding to identify relations between elements, and concluded with selective coding to create proposition themes explaining these relations. ²⁰ During the coding, transcripts were used to form codes or subthemes and to format a codebook with detailed descriptions and interpretations of the data. ²¹ All codes, themes, code names, and coded passages reached intercoder agreement. ²¹ Data saturation was discussed toward the end of the data analysis.^21,22 Throughout this process, findings were discussed among all the authors to confirm the logical reasoning and to determine the accuracy and credibility of the results and the main themes until a consensus on final themes was achieved.

Participant characteristics

The current data is based on 22 of the 25 participants who consented to be interviewed (63% men), aged 33 to 80 with 6–30 years of education. Participants were 6–36 months post-stroke onset, 59% had a right-sided stroke, and 91% had an ischemic stroke. The participants had preserved cognitive ability (median (IQR) Mini-Mental State Examination score: 29 (27–30)/30 points), moderate upper-extremity motor ability (median (IQR) Fugl-Meyer Motor Assessment score: 41 (29–47)/66 points) and were mostly independent in daily living (median (IQR) Functional Independence Measure: 111 (100–114)/126 points). See Table 1 for the characteristics of each of the participants.

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Table 1.

Demographic and stroke characteristics, cognition, motor ability, independence in daily activities and training time for each of the participants (N = 22).

Participant #	Age	Months post-stroke	MMSE (0–30)	FMA (0–66)	FIM (18–126)	Group VG/G	Training time
							Per week	Total
1	67	20	26	48	90	G	6.6	33.4
2	64	15	28	45	117	VG	5.3	26.5
3	33	10	30	28	118	VG	6.0	30.0
4	63	20	29	42	93	G	5.2	26.2
5	58	7	30	46	122	G	4.5	22.5
6	62	10	27	29	114	VG	0.0	4.6
7	52	6	30	34	122	VG	2.6	13.4
8	65	21	29	43	103	G	6.5	32.8
11	64	36	28	35	112	VG	4.4	22.1
13	59	15	30	22	111	G	6.5	32.5
14	68	23	26	19	106	VG	2.5	12.5
15	58	11	30	23	109	VG	5.1	25.7
16	80	9	29	39	91	G	5.6	28.0
17	59	7	25	55	107	G	1.9	9.8
18	59	6	29	50	111	G	6.4	32.2
19	46	19	27	47	113	VG	4.9	24.6
20	75	10	29	55	114	VG	2.9	14.8
21	58	17	29	29	109	VG	4.5	22.7
22	67	11	30	40	112	G	3.6	18.2
23	63	23	21	33	93	VG	1.3	6.5
24	74	8	30	44	79	G	4.3	21.6
25	61	32	28	53	112	VG	1.6	8.2
Median (IQR), or n (%)	62 (58–67)	13 (8–20)	29 (27–30)	41 (29–47)	111 (100–114)	12 (57) VG	4.5 (2–5)	22.6 (13–28)

Note: MMSE: Mini-Mental State Examination; FMA: Fugl-Meyer Assessment; FIM: Functional Independence Measure; Training time is reported in hours. Per week refers to hours per week (an average of the five weeks); Total refers to total hours over the 5-week intervention period; VG: video games; G: GRASP, Graded Repetitive Arm Supplementary Intervention; IQR: interquartile range.

Qualitative results

Twenty-two participants (12 from the videogames group and ten from the GRASP group) were interviewed in-person. Three participants preferred to have their spouses present during the interview. The three remaining participants were interviewed via phone because they could not stay for the interview immediately after the assessments. All interviews lasted between 15 and 45 min. Three main themes emerged from the data analysis and reflected the participants’ experiences regarding various factors related to self-training: personal, environmental, and self-training-related factors. Figure 1 illustrates the subthemes and the interplay among these three main themes (factors) associated with the experience of participation in self-training. Below is a detailed description of the themes and subthemes enriched with exemplar quotes from participants—participant # (group – GRASP or videogame) to illustrate their experiences.

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Figure 1.

Main themes of self-training experience: personal, environmental, and training-related factors.

Personal-related factors

This category identified participants’ personal factors related to self-training and included three subthemes: 1) Devotion to perform self-training, 2) Commitment to the study's team and intervention, and 3) Personal roles.

Devotion to perform self-training—Participants described a strong personal devotion to perform the self-training, often driven by a clear desire to improve their physical function and sense of independence post-stroke. This intrinsic motivation was rooted in a personal commitment to recovery and a belief in the importance of consistency and effort. For many, the self-training became a daily obligation, similar to any other important responsibility. As participant 17 (GRASP) noted: “I wanted to succeed. Look, I wanted to improve the coordination in my hand, and if there were issues with my hand, I wanted to address them.” Participants also described a sense of commitment in maintaining the daily training, despite time pressure and fatigue. For example, participant 5 (GRASP) said: “I knew I committed myself to do an hour [of self-training], and I was fighting against the clock as time passed, but I didn't give up, I didn't cut it short.” Participant 18 (GRASP) emphasized their strong sense of commitment: “I know that I need to do it… I'm committed to do it… I know it will help me maintain my hand.” This overarching theme of devotion highlights how participants internalized the self-training as a meaningful and purposeful part of their rehabilitation, even when it required overcoming personal and logistical challenges.

Commitment to the study's team and intervention—Beyond personal goals, participants also described a strong sense of commitment to the study's team and the structured framework of the intervention. This external source of motivation often reinforced their daily adherence to the self-training routine. The presence and guidance of the occupational therapists, as well as being part of a formal research process, contributed to participants’ sense of obligation and motivation. As participant 5 (GRASP) shared: “It [participation in the research] motivated me to exercise for an hour every day…”. Similarly, participant 17 (GRASP) noted: “Nevertheless, I did it because I felt committed to both [of the OTs in the research team].” This sense of accountability to the team sometimes outweighed internal motivation, especially when the training became challenging or repetitive. However, this external commitment also revealed its limitations. Once the formal study period ended, some participants reported a decline in their training routine. For example, participant 22 (GRASP) reflected: “She [the OT] told me that I can relax, meaning, from now on, I am no longer obligated [as part of the study] to continue the training. I have to admit that since that day, I haven't exercised. But in my mind, there is an intention to return to it…”. These reflections suggest that while structured support can enhance motivation during interventions, additional strategies may be needed to sustain adherence beyond the formal study period.

Personal roles—Some participants found that their involvement in activities related to their roles, such as work or family responsibilities, posed challenges to performing the self-training. Participant 5 (GRASP) described a week where work commitments impacted his self-training, leading him to reduce his engagement due to a busy schedule and lower stress levels: “I was at work, had a busy schedule, I did it but less systematically…”. Participant 14 (videogames) shared how family responsibilities impacted his ability to participate: “In the last ten days, I haven't engaged in any activities because we were not at home; we were babysitting our grandchildren.”

Self-training factors

Two subthemes were identified as self-training factors: 1) The self-training experience and 2) The influence on participants’ general condition.

Factors related to the self-training experience—Participants expressed a sense of enjoyment and satisfaction that they derived from the self-training. Some participants mentioned deriving enjoyment from the animations presented in the videogames, as participant 2 (videogames) said “The commentator/announcer in the game… constantly cheers you on … he talks to you: ‘It's your day'! ‘You're doing something amazing'! … It motivates me to keep going and the graphics are good.” Participant 25 (videogames) added that the “Ping pong game was extremely fun.” Others experienced enjoyment following the self-training even when they felt exhausted: “on one hand, it's exhausting; you get very exhausted, but on the other hand, I feel that it does good, it truly does good.” Participant 15 (videogames) experienced enjoyment and acknowledged that the self-training was beneficial for him: “I think it helped… Yes, I enjoyed it. I really enjoyed it. Every time, I would truly enjoy it.” Others experienced satisfaction from the sense of accomplishment, despite initial challenges in performing the game. For example, participant 3 (videogames) engaged in videogames described initial frustration due to early difficulties, but over time, noticeable improvement brought a strong sense of satisfaction. As expressed by: “On the one hand, I felt frustration when they [the study's team] introduced the game to me, at the beginning I wasn’t successful. On the other hand, I felt a sense of satisfaction because I saw that I was improving, and I persistently kept doing it every day… Overall, a feeling of satisfaction.” However, some participants conveyed negative experiences related to their participation in self-training, including feelings of boredom. As participant 17 (GRASP) said: “There was progress, but [the hand] did not change. There was an improvement, although the fact that the exercises were easy and not challenging somewhat hindered the improvement.” Also, participant 7 (videogames) shared that he did not have enough patience for the self-training, attributing it to boredom: “They [research team] asked me to exercise one hour a day, but this was beyond my patience … it was just boring.”

Some participants highlighted the impact of the presence of others (family members or members of the research team) on their self-training experience. Participant 5 (GRASP) shared that his sister pointed out the improvement in his affected upper-extremity functioning during training sessions by saying that the difference between his two hands is no longer apparent. Thanks to his sister's feedback, he could notice the difference “because maybe it's just a millimeter each day…someone from the outside might be able to see it, but I don't,” but he did feel some change while using his hand in daily activities: “when I pick up a bottle of water, I immediately notice that I'm drinking like this.” Some noted that receiving guidance and supervision from the occupational therapist was perceived as a positive factor impacting engagement in self-training, as participant 3 (videogames) mentioned: “I spoke [to the OT] and we decided that I will do [only] part of the first disc because it was too hard, I did not train for the whole hour.” Participant 17 (GRASP) added that it was “a lot of effort to complete it [the training], and [the OT] tried her best to make me engage in it.”

Factors that influenced participants’ general condition—Within this subcategory, participants shared the outcomes from the self-training, with a primary emphasis on physical aspects. They articulated a range of outcomes experiencing positive, negative, or no change. Some participants reported improvements in the range of motion of their affected upper-extremity following self-training. This enhancement, in turn, facilitated the spontaneous use of their hand in various daily activities. For instance, participant 3 (videogames), a young mother, shared: “Simply, I feel that I'm using my hand more…. There's also an improvement in the hand's quality of movement. In everyday life, I rely more on my hand in what I can do… I lift my baby with both hands…. I am opening doors, carrying grocery bags, and… I feel that I use it [the hand] much more.” Participant 22 (GRASP) provided an example of experiencing improvement and using her hand more spontaneously: “Without intending to, and even not consciously, suddenly I reach my left hand to do things… this means the hand is more active in a more instinctive way… and there are more natural movements.” Other participants shared that the observed improvement enhanced their self-confidence in using their hands, as participant 15 (videogames) stated: “Confidence…, let's say I'm using my hand. Before [the self-training], I was a bit afraid to lift it [the hand], and now I do.“Conversely, others reported negative outcomes which appeared immediately following the self-training session, including pain, fatigue, and an increase in spasticity. Participant 11 (videogames) expressed: “At least from my perspective, shorter periods [of training] with longer breaks seem to decrease the fatigue… these games are exhausting.” Participants 15 (videogames) noted similar outcomes, adding: “Sometimes [training] was exhausting, my hand was shaking …because of the fatigue and effort, the spasticity increased.” Others expressed no change in their condition following the self-training, as said participant 13 (GRASP): “When I don't see improvement, it doesn't give me the desire to continue this research, [despite] all my good will.”

Environment-related factors

In this category, participants highlighted environmental factors that either facilitated or hindered their engagement in the self-training. This encompassed the: 1) Training equipment (for the videogames group), 2) Physical environment of their home, and 3) Family members.

Training equipment—Some participants found the self-explanatory nature of the videogames were easy to engage in self-training, as participant 3 (videogames) said: “The exercise came with an instruction booklet; it was self-explanatory. It's incredibly easy for our generation; there's no problem operating such things (videogames). Additionally, I was familiar with it from the rehabilitation center.” For some participants, family members played a motivating role to encourage the self-training. Participant 17 (videogames) shared that when lacking motivation, discussing this with his sister enhanced his ability to continue adhering to the self-training: “I shared with my sister that it [the training] was not interesting, and she motivated me to cooperate, to keep trying and complete the study.” Similarly, participant 20 (videogames) described the positive outcomes of her husbands’ encouragement to train, even when she felt too tired: “I'm amazed by how I even managed to do it (the exercise) at all. My husband suggested that I try the exercises today. I tried, completing the exercises for about three-quarters of an hour, and felt like a new person.”

The physical environment of their home—Participants also mentioned that their home environment played a role in enabling or hindering self-training. Some of the participants related to the physical space, for example having a large and private area allowed practice whenever and as much as they wanted, as stated by participant 4 (GRASP): “We have a big home, with separate rooms for each of us” and there were participants, who described how the technological equipment takes up a lot of space on the sideboard at home, and this is limiting Participant 7 (videogames).

Family members—The presence and routines of family members significantly influenced participants’ ability to engage in self-training. While some participants received support and encouragement, others found that shared living spaces and family schedules limited their training opportunities. Participants often had to adjust the timing and location of their training based on household dynamics. For example, participant 6 (videogames) shared: “When my son is at work, I could sit in his room, because he has a big TV screen, and it is more comfortable to train there.” Participant 7 (GRASP) described: “We have four televisions at home, but when my son brings his friends over, I can't use the device and can't practice like I usually would.” These insights highlight the importance of considering family routines and home dynamics when designing home-based interventions.