CO-OP Approach With Children and Youth With Executive Function Deficits After Acquired Brain Injury: A Qualitative Study of Care Partners’ Involvement

Study Design

A qualitative descriptive research design was used to describe care partners’ experiences. This design is used to obtain a direct description, summary, and understanding of participants’ experience (Lambert & Lambert, 2012), rather than to explain or discover its meaning. Although qualitative description does involve interpretation, minimal inferences are made to stay as close as possible to the original data (Moser & Korstjens, 2018).

Setting

This study was approved by Sud-Ouest et Outre-Mer II Research Ethics Committee (2–20–051 id6780). Twelve children 1 from two rehabilitation centers took part in the larger study. Informed consent was obtained from the child’s legal representative, and assent was obtained from the children themselves. The larger study used a replicated single-case experimental design (SCED) with multiple baselines across participants and participant-chosen occupational goals (Lebrault et al., 2023). The original SCED (n = 4) was replicated with two clusters (i.e., different participants, different settings, different clinicians). Each child received 14 individual 45-min CO-OP sessions, twice per week over 7 wk, during which they worked on three occupational goals they identified before beginning the intervention.

Participants

For this qualitative study, French-speaking care partners were included if they had a child or youth (ages 8–16 yr) who had been diagnosed with an ABI sustained at least 6 mo before inclusion and EF deficits confirmed by neuropsychological assessment and who participated in a CO-OP intervention in the context of the larger study. Pseudonyms were used to anonymize participants.

Data Collection

Semistructured interviews were conducted with care partners at three time points: (1) at the end of the CO-OP intervention (T1), (2) 2 mo postintervention (T2), and (3) 6 mo postintervention (T3). These interviews were conducted by an independent occupational therapist who was certified in the CO-OP approach, who was trained in interview techniques, and who did not know the CO-OP study participants. The interview guide consisted of open questions designed to capture the experience of the care partners in supporting the use of CO-OP. The interviews were conducted by videoconference and audio recorded with two voice recorders.

Data Analysis Plan

An inductive qualitative content analysis was carried out. This type of analysis is a systematic and objective means of describing and quantifying phenomena (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005; Vears & Gillam, 2022). The goal is to provide knowledge and understanding of the phenomenon under study (Downe‐Wamboldt, 1992). Content analysis can be inductive or deductive. Inductive analysis is generally used when a theory or previous research on a phenomenon exists (Hsieh & Shannon, 2005), and it involves looking for correspondence with predetermined categories or themes (Bengtsson, 2016; Elo et al., 2014). For this study, we used an inductive analysis in which categories or themes were created inductively from a close reading of the texts (without a theory-based categorization), rather than by searching the text for a predetermined list of content items (Vears & Gillam, 2022). It is qualitative in the sense that it aims to produce an understanding of the meanings of the data set contents (Vears & Gillam, 2022).

The analysis was undertaken using Nvivo software (Release 1.7.1), with the verbatim transcripts prepared in advance using Microsoft Word. Data saturation was confirmed through an iterative process of constant comparison, sorting through the original transcripts. The following three steps were repeated: (1) open coding, (2) creation of categories, and (3) identification of themes (Elo & Kyngäs, 2008). The content analysis of transcripts was undertaken by the first author (Eleonore Dietrich), who was independent of the CO-OP intervention and blinded to the participants, and the second author (Helene Lebrault). The categories and themes were then discussed and corroborated by these authors (Elo et al., 2014).

Several triangulation strategies were adopted to ensure the trustworthiness of this research (Korstjens & Moser, 2018). Persistent observation and investigator triangulation were ensured by having three researchers (Dietrich, Lebrault, and Rose Martini) involved in the iterative process of the coding analysis and interpretation. The initial codes for T1 interviews in the first group of participants (i.e., the original SCED) were proposed by Dietrich and discussed with Martini and Lebrault. The codes for T1 interviews in the third group (i.e., the third replicated SCED cluster) were then proposed by Lebrault and discussed with Martini and Dietrich. At this point, it was decided that (1) Dietrich would continue with the analysis of T2 and T3 interviews from the first group and the analysis of all the interviews from the second group (i.e., the second replicated SCED cluster) and (2) Lebrault would continue with the analysis of T2 and T3 interviews from the third group. Four meetings of these three authors marked this final analysis phase.

The fact that we interviewed each participant three times, at different points (over 6 mo), contributed to data triangulation and helped to verify that the data collected represent reality (Erlingsson & Brysiewicz, 2017).

The Child Is an Active Agent in Their Therapy

Children’s care partners described how, in CO-OP, the child was an active agent in their therapy and spoke of the considerable positive impact this had on their motivation and engagement, development of self-efficacy, and development of problem-solving skills.

The care partners described how having children choose their own goals made them feel heard and listened to. This encouraged the children’s engagement because they were highly motivated to achieve their goals. CO-OP gave them the opportunity to take an active role in their rehabilitation.

He was more motivated because he was the one choosing the goals. (physiotherapist, Karl, T1)

Care partners shared that CO-OP fostered in the children a belief that their abilities can be developed and improved through commitment and hard work. They observed their children gain a greater sense of self-efficacy, along with a sense of pride and satisfaction.

Making Ron’s life easier, certainly, and then it’s above all the benefit of “I’m able to succeed, I’m able to do and, uh, gain self-confidence and gain autonomy, uh, that’s above all what’s very positive. . . . Personal fulfillment, that’s for sure. (mother, Ron, T1)

Several parents also reported that children became more perseverant and developed a better understanding of their abilities and limitations.

I’m glad, she’s hanging in there and persevering, that’s good. . . . It really means acquiring a lot more autonomy and then managing on her own. From time to time . . . she really calls on me when . . . she’s tired, she can’t take it anymore, she’s done a lot. (mother, Dona, T3)

At later timepoints (during T3 interviews), care partners pointed out that the concrete success the children experienced as a result of their own active problem-solving process in the CO-OP intervention enabled them to assert themselves and deal with difficulties more calmly.

I think being able to crochet again was a real turning point. She said to herself “Ah, but it turns out I can, I can still do lots of other things,” and that was it. . . . I have the impression that she’s revived, that’s it, she’s revived. (mother, Dona, T3)

Care partners noted that this concurred with an increased desire for independence and autonomy.

At first it was me, I did everything for her . . . but you can see that [now] she wants to do things, she’s managing, that’s it. (mother, Mary, T3)

Care partners recognized the global strategy as the children’ problem-solving tool. Children’s active application of this problem-solving method, repeatedly for different tasks, enabled them to become familiar with and more confident in solving their own performance obstacles. As one parent pointed out, the global strategy is like a backbone that structures their thinking.

I’d even say, finally, it’s a tool that structures him now, it’s become almost, well, an element of his backbone what, it’s still, yeah it’s essential what, yeah, yeah, it’s essential. (mother, Adam, T3)

Some care partners describe how their children begin to analyze their own task performance and start to apply strategies.

Now everything is going well, and there’s no need to tell him to take the medicine; he takes it quickly, and he has found the solution. (mother, Nathan, T1)

Nevertheless, care partners also mentioned that the emotional frame of mind in which children found themselves (e.g., enthusiasm, cooperativeness, level of attention) influenced success in this problem-solving approach and that it was essential that children be in the right emotional frame of mind and a context that allows reflection.

Uh, so he wants to cook for himself, with the aim of me going back to work on Wednesdays and him being home on his own, so, uh, and, uh, and so, well, I’m training him to prepare for this challenge. And so, on Wednesdays, he made himself something to eat, he prepared food, and things went well until Wednesday, March 10. He was rebelling, he didn’t want to. . . . In fact, I think it was too much for him. (mother, Adam, T2)

The Care Partner Is the Keystone Who Helps Solidify the Effects of CO-OP

All care partners talked about their supportive role in CO-OP and how it changed their perspective toward their child. Care partners described the creation of a care partner–child team, where their support and empathy for the child were paramount. When children became discouraged or got stuck, care partners were the first at their side to cue or guide, often putting themselves in their children’s place to better understand their difficulties.

He tried to think on his own how he could do it and then I guided him with the “magic phrase” and that allowed him to find the strategy. (educator, Karl, T1)

Even later, postintervention, the teamwork continued, guiding reflections around new goals:

Now I systematically try to throw the ball back to him and tell him, well, you don’t know, well, but I think you have the information, uh, and . . . if you don’t have the information, well, you do how, uh, you have the means to find the information. (mother, Adam, T2)

In the role of supporter, care partners guided, accompanied, and supported as needed. At the same time, they also expressed a sense of letting go and staying at distance. Care partners underscored the necessity of letting children experiment on their own and find their own strategies and of affording them the freedom to experiment through trial and error:

We first let him try everything he can do, in a rather free way, to see what, how he’s doing, and if we see that there’s a point of failure, to guide him toward this goal. (physiotherapist, Karl, T1)

Some care partners described CO-OP as a mediator in their relationship with their children, that it helped with their children’s impulsiveness.

I think it’s easier for him to do it like that, because before he used to get upset but now with this method, we’ve learned so, um, he can think and give the right answer with a smile. (mother, Ian, T3)

Care partners expressed that it was easier to apply CO-OP at home when it is aligned with an existing attitude and approach when interacting with their child.

We’ve always worked like that, so for me there’s nothing unusual or exceptional, that’s what I wanted to tell you, in fact there’s nothing unusual or anything, so there you go, it’s not a constraint. (mother, Ron, T2)

Finally, care partners greatly appreciated being an integral part of the therapy at all stages of the intervention, because this reinforced their role as experts on their children.

To be able to exchange ideas, um, we were able to rediscover our, well, our place as parents who knew our child, yes, a recognition of the knowledge that we can have of our child. (mother, Neil, T3)

CO-OP Requires Time and Practice, and Its Use Evolves Over Time

Care partners mentioned that they and their child experienced several periods of adaptation over the course of CO-OP, pointing out that mastering the approach requires time and practice.

Several care partners expressed that they found it difficult to know what questions to ask to guide their child toward the solution without feeling frustrated or giving them the answer. An adaptation period was needed to learn how to guide the children without doing things for them. Over time, care partners became more comfortable letting their child discover freely by encouraging and guiding them, while remaining at a distance.

Difficult, uh, I find maybe not to give too much information, not to give the information for the child and just let the child do [it] . . . and trusting them and saying you can do it, we can do it. (physiotherapist, Karl, T1)

Even the children need some time to learn the problem-solving process using the global strategy (goal–plan–do–check). Eventually, the children are able to use it to find their own solutions.

She used it very well, compared with before, at the beginning it was complicated. (mother, Mary, T3)

Although the collaboration with the occupational therapist and the practice tasks assigned between sessions facilitated the gradual mastery of CO-OP, care partners underscored that competence in CO-OP requires time and practice, but that as competence develops, it is more likely to be applied.

In theory it’s easy to understand, but in practice it’s a different story. . . . It takes experience, and that experience is something you develop over time. (mother, Adam, T2)

Later in time, after the intervention, care partners remarked that, even if they do not systematically think of using CO-OP, when a difficulty arises, this way of thinking has nonetheless become well anchored in their daily lives.

I don’t always think about it either, but it’s true that when, when, yes, when he’s facing a difficulty, I try to, to explain it to him . . . and then it’s true that sometimes I say to myself, wait, it fits, it fits with the method and we can use it. (mother, Ben, T2)

Care partners pointed out that the context was not always suitable for practicing CO-OP: For example, the environmental constraints that care partners and children face in their daily lives may have influenced their opportunities to practice, such as lack of time, difficulty integrating the practice into the family routine, other family events and responsibilities, or weather constraints.

We had taken the time to do it but that week, we didn’t do it because I’m in work interviews on the go. (mother, Ian, T1)

After the intervention sessions ended (after the children left the rehabilitation center), children continued to face new challenges, but there was less time for CO-OP because they had a new routine more laden with school and other activities. This evolving context changed the opportunities for CO-OP practice.

Sometimes for lack of time, it’s quite complicated . . . to use it on a daily basis, . . . at very specific times, for example, during the week . . . it’s a bit complex, we do it more, uh, more systematically at weekends, for example, when we have a bit more time. . . . In fact, it takes time to see a project through to the end. . . . The stress in the morning, there’s that, in the evening, too, and now we’ve added activities [at this point, the child’s school time increased, and he had just transitioned from an inpatient to an outpatient unit], homework, so there’s a lot of little things that we did a little more often at the beginning and that we do a little less now, unfortunately. (mother, Ron, T2)

Despite not having mastered or continued with CO-OP after the end of intervention, care partners shared that the gains made thanks to CO-OP had endured and generalized over time.

Uh, he’s already brushing his teeth like he learned. He chooses his clothes [new activity], he does it now, I’m not behind him anymore . . . tying his shoelaces, he does it, too, uh, I’m not there behind him anymore when he gets dressed, he does it all himself. (mother, Ian, T2)

Care partners’ perceptions of their child evolved considerably over the course of the CO-OP intervention. At first, they felt that the goals chosen were too ambitious. However, as the intervention progressed, the child exceeded the care partner’s expectations. This improved their confidence in them and generated pride.

At the beginning I said “oh la la,” he still set some goals, for example, the bike was a bit difficult, but in the end, I said to myself, well, it’s great because he still managed to do everything he wanted to do. (educator, Karl, T1)

With time, care partners sensed that their presence was no longer necessary. They became confident in the child’s ability to take the initiative and turn to them only when necessary.

It doesn’t happen right away, but as time goes by, they figure it out on their own, they don’t necessarily need an adult with them. (educator, Karl, T1)

After the intervention sessions ended, as new tasks were encountered, care partners described that CO-OP had helped them feel more reassured and confident about their child’s future.

It lifts a weight because it was, uh, it’s not easy to, uh, every day to accompany children who have difficulties, but it’s true that the facts, the fact of seeing them blossom, in fact I don’t necessarily mean that she manages to do everything but that she is blossoming, that’s good, that’s great. (mother, Dona, T3)