Background
Schoolchildren with acquired brain injury (ABI) may suffer long-lasting physical, cognitive, behavioral, and social symptoms, creating a wide range of rehabilitation challenges that require an individualized, context-sensitive and interdisciplinary approach [
1]. Studies have also indicated that younger children with ABI experience difficulties in developing academic skills, accompanied by a lack of effective school support [
2,
3]. Rehabilitation for this group should involve a range of activities— including educational and psychosocial support, delivered by a multidisciplinary expert team in a person-centered process [
4,
5]. Only a few rehabilitation trials tailored for schoolchildren with ABI in the chronic phase and their families are available, and a lack of convincing treatment recommendations remains a challenge in the field. There is convincing evidence for caregiver-focused interventions, but complex ABI-rehabilitation interventions where children, parents and schools all participate have not been evaluated in trials [
6].
The involvement of children in clinical planning and decision-making has been lacking [
7], even though supporting children to actively participate in the treatment may improve outcomes, create more personalized care and contribute to better management of their conditions [
8,
9]. To facilitate children’s engagement in the rehabilitation process, the aims and contents must be perceived as meaningful to the child. Herein, the child’s preferences need to be taken into account [
10]. The extent to which the child’s involvement is possible will depend on their development stage, type and severity of illness, personal characteristics and patient relationships with professionals [
8,
9]. In addition, children with ABI are at greater risk of missing out on participation in different arenas as compared to their non-injured equals [
11]. A recent review showed that obstacles to child participation in brain-related healthcare are related to children’s level of understanding, the time and energy necessary for information processing and the lack of perceived relevance of the information. Participation in treatment has two components:
attendance, defined as ‘being there’ and measured as the frequency of attending, and
involvement, the experience of participation while attending [
12]. Treatment participation for children is supported by parents, which highlights the importance of family involvement in pediatric rehabilitation. Given the heterogeneity in age, awareness of deficits, injury severity and types of impairment for children with ABI, their ability to be involved varies. Nevertheless, even young children with severe injuries should have the right to participate [
13].
Qualitative research can help explore patient perspectives prior to a clinical trial to ensure that the intervention is acceptable and experienced as relevant to the needs of the patients and their families [
14]. Despite being overlooked in the past, the value of feasibility testing is now widely accepted [
15]. For example, it is helpful to understand whether a specific intervention can be conducted in an acceptable manner [
16]. Acceptability is a multi-faceted construct that reflects the extent to which people receiving an intervention consider it appropriate, based on their experienced cognitive and emotional responses to it [
17]. Participant responsiveness is also related to the intervention’s mechanisms of change (i.e. how the delivered intervention may be experienced to result in positive change), as experienced by the participants [
18,
19]. What interventionists perceive to be the expected mechanism of change may be different from what individual families perceive as helpful. This may be especially true for families of children with ABI, where the concerns are diverse and heterogeneous, further supporting the use of qualitative data. The understanding of participants’ experiences about what aspect of an intervention they experienced as contributing to improvement can enhance the design of the intervention and help researchers better understand whether the mechanisms of change are reflected in the perceived benefits. Hence, it can benefit future evaluations and improve patient-centered healthcare [
20], as well as enable researchers to optimize the intervention outcome or conduct of the trial [
21].
The Child in Context Intervention
The Child in Context Intervention (CICI) was developed to enhance the participation and everyday functioning of children with ABI in the chronic stage in the home and school environments, as well as to improve parent functioning. The CICI was modelled after two studies conducted for adults with traumatic brain injury [
22,
23] and adapted for children, families, and schools. For a full description of the study protocol, please refer to Rohrer-Baumgartner et al.’s paper [
24]. The intervention targets problem areas that a specific child and their family experience as most challenging, with the aim of providing the families with strategies that would benefit them even after the trial completion [
25]. It was designed in line with current recommendations in child ABI research and the Medical Research Council’s framework for evaluating complex interventions [
15,
26,
27].
The intervention components included seven tele-rehabilitation sessions conducted using videoconferencing between CICI therapists and the family, one parent seminar and four digital school meetings, which were attended by the child’s key personnel at school. Parents were also encouraged to attend school meetings. Children were allowed to participate in the school meetings if they wished to, but none chose to attend. The families and schools received a handbook containing different topics about usual challenges for families following ABI (CICI handbook). The components were designed to facilitate an increased understanding of symptoms through written and oral psychoeducation (handbook and interactive lectures about child symptoms) to help set goals of relevance to everyday functioning and to create a shared understanding of the child’s needs and improved cooperation between schools and families.
The intervention was delivered by a multidisciplinary team comprising one special needs teacher, one specialized pediatric nurse (E.J.S.) and two clinical neuropsychologists (N.R.-B. and I.L.H.) with clinical experience in family-centered care and rehabilitation. The therapists ensured child involvement and building alliances with the children. Meetings between the therapists and participants were conducted digitally to reduce the burden of travel, time spent and costs, actualized by Covid-19. The feasibility of the outcome measures, neuropsychological measures and quantitative feasibility data can be found in the paper by Laberg Holthe et al. [
28].
At baseline, the children and parents nominated the three problems in their everyday life related to ABI and rated how difficult they perceived them to be. Goals were developed following the SMART principle, ensuring that they were Specific, Measurable, Attainable, Realistic and Timely (SMART) [
29]. During the family sessions, 3–5 SMART goals were developed, goal attainment scaling was performed [
30] and strategies were developed. School-relevant goals were presented to the children’s teaching personnel, where school-based strategies were negotiated, implemented, and evaluated during school meetings.
Table
1 presents an overview of the hypothesized mechanisms of change and desired outcomes. It was hypothesized that the combination of treatment components would result in positive change for the families, and that one mechanism of change would be the establishment of individualized SMART goals and treatment strategies in the child’s context. The parent seminar was designed to facilitate the sharing of experiences, practical advice and emotional support. The one-day seminar was expected to result in enhanced motivation to engage in the intervention and parenting self-efficacy.
Table 1
Overview of the intervention's presumed mechanisms of change and outcome
Assumptions about how the delivered intervention produces positive change
|
Desired outcomes and change
|
CICI-specific mechanisms: • Individualized and family-centered SMART goals based on the main ABI-related problems for families • Developing, adjusting, and implementing treatment strategies in the child’s context (at home and in school) • Increasing knowledge/understanding of symptoms through written and oral psychoeducation (CICI handbook/material and interactive lectures about common child ABI symptoms) • Promoting a shared understanding of children’s needs and improved collaboration between schools and families • Sharing experiences and feelings with other parents in a comparable situation in a therapist-led environment to enhance intervention motivation and parenting self-efficacy
General mechanisms: • Degree of motivation, participation and involvement • Participants’ experiences of alliance and support • Therapists’ competencies and background • Participants’ resources and backgrounds • School resources and facilities | • Enhanced participation and everyday functioning of the child in everyday life and school • Improved family functioning • Increased child self-efficacy • Increased parenting self-efficacy • Decreased burden of ABI symptoms for child and parents |
Aims and objectives
The aim of this study was to better understand how children, parents and teachers experienced participation and acceptability, to develop knowledge about the mechanisms of change, and to explore how the CICI was tailored to the context. This was done by investigating the following:
(1)
How the participants experienced their own involvement and participation in the intervention.
(2)
How and whether the CICI was experienced as acceptable to children, parents, and schools, and thereby, which potential mechanisms of change were perceived as beneficial by the participants.
Design and methods
The feasibility study comprised a one-group pre-post design, with a pre-intervention baseline assessment (T1) and a follow-up assessment after the intervention period of 4–5 months (T2) and qualitative interviews. The feasibility study was first launched in January 2020. Due to a Covid-19-related lockdown, it was put on hold, then re-opened in August 2021 and concluded in December 2021. The quantitative results are published in Holthe et al.’s paper [
28]. Here we report on the qualitative part of the feasibility study.
Participants
Six children and their parents were recruited from Sunnaas Rehabilitation Hospital. The inclusion criteria were as follows: (1) 6–15 years old; (2) CT-or MRI-verified ABI diagnosis; (3) at least one year since onset; (4) self- or parent-reported ABI-related subjective cognitive, emotional or behavioral problems influencing everyday life and/or participation related to family, friends, school or local community; (5) regular school attendance and (6) ability and willingness to participate actively in the rehabilitation intervention.
The exclusion criteria were as follows: (1) severe pre- or comorbid neurological disorders, such as severe autism or uncontrolled epilepsy; (2) children with brain tumors in active treatment or at great risk of relapse; (3) children with severe psychiatric illness or in institutionalized care; (4) children in child welfare services; (5) severe parental psychiatric illness, drug abuse or indications of a history of or risk of domestic violence and (6) non-fluent in Norwegian. These criteria are discussed in Rohrer-Baumgartner et al.’s paper [
24].
The feasibility study was conducted collaboratively between the specialized healthcare system, the National Service for Special Needs Education in Norway (Statped), teachers/school personnel and relevant local rehabilitation services.
Interviews
Six children, five mothers, six fathers and six teachers (one from each school), totaling 23 participants, consented to participate, resulting in eighteen qualitative interviews performed in January 2022, 3–5 weeks after finishing the intervention. The children’s injuries were TBI (2), anoxia (2) and brain hemorrhage (2). Overall, their range of cognitive functioning varied between normal and impaired. The parents were interviewed together—except for one father, who was interviewed alone (the mother declined). In four of the children’s interviews, one or both parents participated. The children were between 11 and 15 years old at the time of recruitment (mean 12.8), and the time post injury was 1.5 to 13 years. While some of the children struggled with severe cognitive impairment, others were mildly affected. Level of verbal abstract reasoning (Similarities subtest of the WISC-V) varied from scaled scores 1–12, while nonverbal reasoning (Matrix reasoning) varied from 3 to 9 [
31]. One child had neuropsychological functioning within the normal range, one child had neuropsychological functioning within the normal range except for reduced working memory (-1.3 sd), three children had considerable neuropsychological impairment within several domains (-1- -3 sd) and one child had an overall severely impaired neuropsychological functioning with all scores in the impaired range (-1,3- -3 sd). An overview over the measures used and a brief description of each child’s results can be found in Laberg Holthe, et al. [
28]. Four children were in regular schools, one child attended a private school and one attended a special educational school. Except for one family that received one night of respite care for their child per week, all children lived at home with both their parents and siblings and attended school daily.
Interview setting
The participants were interviewed at home through the secure digital platform Cisco Webex™ using their personal computers.
Data collection
Digital qualitative interviews, which have been shown to provide high-quality qualitative data [
32], were used for data collection to help ensure social distancing requirements during the Covid-19 pandemic. Interviews are useful when investigating personal experiences and understanding a topic [
33]. The semi-structured interviews applied a thematic interview guide. The themes were expectations and experiences with participation in the intervention; usefulness, benefits and concerns related to the strategies developed in intervention and experience with the digital solution and user involvement. The second author (E.K.) performed all the interviews. She has experience interviewing children and parents. As she was not part of the intervention delivery team, the participants were able to speak freely.
Analysis
The interviews with the children lasted about 30 min each and those with parents and teachers lasted about 60 min each. The interviews were transcribed verbatim, resulting in 236 written pages. Braun and Clarke’s (2006) thematic analysis inspired the analysis conducted in this study. It consists of six phases: (1) familiarizing yourself with your data, (2) generating codes for the relevant data in the dataset, (3) searching for themes, (4) reviewing the themes, (5) defining and naming the themes and (6) producing a report. The transcripts of each group of participants (children, parents, and teachers) were coded separately and, thereafter, rearranged deductively into themes based on the research questions. Therefore, steps 3 and 4 were, performed with the pre-defined themes, with less attention paid to defining and naming the themes. Consensus was established on the interpretations and sorting into themes. Excluding the transcription part (performed by E.K.) in step 1 and coding (performed by E.J.S.) in step 2, E.J.S., E.M.K. and L.K.B. conducted steps 3–5 in a systematic process of discussion and reflection. In the results, the letter C marks quotes from children, M from mothers, F from fathers and T from teachers. To signify which of the six child–parent–teacher constellations the quotes were collected from, we added a second letter (constellation A-F). For example, CA signifies a quote collected from a child in constellation A.
Ethics
The Norwegian regional ethics committee of Southeast (approval number REK 2019/1283) approved the study. The children were provided with oral and written age-appropriate information and verbally assented to participate, since they could not consent because of their age. Both parents gave written consent on behalf of their children. The parents and teachers received oral and written information. Parents gave written, while teachers gave oral consent to participate and for the results to be published.
Discussion
The objective of this feasibility study was to improve the final randomized controlled trial (RCT) design to better understand how children, parents and teachers experienced participation and acceptability; to develop knowledge about the mechanisms of change, and to explore how the CICI was tailored to the context.
The study results indicated that the children, teachers and particularly parents felt involved and able to influence the decisions made in the intervention. They experienced the intervention as acceptable and found it mostly useful, valuable and rewarding.
Overall, the children who participated in the intervention experienced that their opinions were heard. All children felt acknowledged, which is an essential aspect of participation [
25] and an assumed mechanism of change. The parents, teachers and therapists facilitated the child’s participation in a flexible way. However, involvement seemed challenging for children with severe cognitive impairment, exemplified by their need for extended support in the interviews and in the intervention sessions. Therefore, it is difficult to argue that their retrospective opinions fully represented their experiences of participation and acceptability at the time of participation. Participation can represent a particular challenge for this group due to the combination of attentional and other cognitive deficits, including a lack of awareness of their deficits [
34]. Flexible attendance can be a realistic goal rather than expecting involvement from all children. However, children’s age and ability to attend and engage in the rehabilitation process must guide their participation in sessions. Sometimes, it can be a better choice to work indirectly through parents and/or teachers to structure the child’s environment or context to optimally support their functioning instead of working directly with the child. Nevertheless, in future RCTs, care should be taken to promote involvement, when possible, by, for example, giving frequent reminders of progress and by ensuring that the agreed-upon plans are acceptable and meaningful to the children. As opposed to attendance, involvement may include experiences of engagement, motivation, persistence, social connection and level of effect [
12]. Although involvement in decisions about their goals increases patient motivation in their rehabilitation, patients vary in how much involvement they wish to have in their rehabilitation [
35]. Furthermore, it is essential to facilitate attendance, since the probability of being involved in an activity increases if it is an activity that one frequently attends [
36]. Nonetheless, a concern is that some children experienced that the adults did not act upon their contribution and that their parents´ opinions were weighted above theirs. One possible explanation may be that therapists took turns validating the children’s and the parents’ feelings, and furthermore, tried to establish common ground between the two. This may have left some children to experience that the adults were talking around them rather than with them. This can also be due to difficulties in adjusting and engaging the child in the mainly verbal intervention. Moreover, some children have limited awareness of their challenges, some have severe cognitive deficits, and some prefer not to talk about their injuries, resulting in a need to focus goals on adapting environmental factors through collaboration with parents, despite the children not being fully involved. The example with the earplugs demonstrates the following dilemma: when noise increases fatigue, motivating the child to try new or other more acceptable strategies to reduce fatigue can be meaningful, even though the child initially does not prefer them. However, children’s voices have intrinsic value [
37], and continued attention by the CICI team to their impairments, level of insight and emotional maturity must be provided, balancing the child’s voice with the adults’ voice. Providing the children with a feeling that their opinions matter is probably a key factor in ensuring active participation from them.
The digital format affected the children’s experiences. As noted by parents and some of the children, the children could have experienced the meetings as more engaging if they were physical rather than the synchronous videoconference used. The videoconference format might have hindered alliance building, since eye contact is difficult, and the use of methods like games, drawings and physical objects is more difficult. In line with previous research [
38,
39], the age and developmental stage of the children were important factors in determining children that best benefit from therapy through videoconferencing. In another study on digital rehabilitation, children who dropped out were more likely to have severe impairment following brain injury [
38], indicating that such children are at higher risk of non-participation in digital rehabilitation interventions. In contrast, the digital format allowed children to participate safely from their own homes; in particular, it allowed children with severe fatigue to participate without the hassle of travelling. Tele-rehabilitation has demonstrated elevated levels of attendance by families in rehabilitation [
40]. It is considered a strength of the intervention that the children are invited to participate in intervention sessions at the attendance or involvement level.
In most families, the children’s own participation and engagement in their rehabilitation was perceived as an important mechanism of change. However, children with ABI are often not included in family interventions [
6]. For two of the children with the most severe impairment, their parents and teachers argued that the intervention would have provided the same outcome
without the child’s participation or knowledge of the CICI. They perceived the strategies intended to adjust the child’s context as the most valuable. As such, particularly for children with severe impairments, the most prominent mechanism of change was probably not related to the direct involvement of the child in the sessions. Rather, for some families, the mechanisms of change can be found equally in the context (aim to establish compensatory strategies and environmental adaptations) and in the involvement of the child. This flexibility in involving the children to varying degrees can be considered a strength of the intervention, indicating how the CICI can also be promising for families with children whom suffer severe impairment, and therefore have limited ability to benefit from attending a rehabilitation meeting. In the RCT, continued efforts will be made to slow down and rephrase the exchanges to improve understanding and engagement. It is also important to closely regulate the time the child will be required to attend the digital meetings. The intervention was experienced as acceptable and especially useful and valuable to parents. It was judged acceptable by families regardless of the time since the child’s injury. The parents perceived that the intervention had helped the family in their everyday lives. These considerations of usefulness are in line with the recommendations from a recent review on including family-based intervention in the rehabilitation of children with ABI [
6]. As mentioned, the participants highlighted different approaches that were most helpful, such as new knowledge and a SMART-goal approach, whereas many voted for the ‘whole package’. This indicates that the components described in Table
1 were experienced as useful and acceptable but also that they worked well together and hopefully reinforced each other in creating a change [
41]. However, additional embedded mechanisms may contribute to a change in outcomes. For the participants to delineate explicitly which components of a complex intervention they find helpful is not expected, since this is a complex intervention designed to work on multiple levels and target a heterogeneous group of participants. When the participants said the ‘whole package’ of the CICI was the most helpful, it exemplifies how difficult it can be to delineate the active ingredients in rehabilitation since treatment often involves simultaneous application of multiple different treatments [
42]. The level of individualization of the intervention may also influence their experience. Since the CICI is flexible, it can support the structural, personal and social processes of motivation and ability. In turn, this might reinforce behavioral engagement and problem solving, which can be useful in diverse ways for different families. Various aspects of the intervention might have been of varied importance for both the separate groups of participants and the individual children, parents, and teachers. For example, the mechanisms of change may have been CICI-specific components, such as the SMART-goal approach or increased collaboration with the school system. For others, it might have been the child’s participation. The most relevant component might also have varied according to what was noted as the most challenging ABI-related problem.
Some children and parents felt that the school neither understood the child’s challenges nor adjusted for them prior to the intervention, although the need for long-term school support for children with ABI is well known [
43,
44]. The teachers perceived the intervention as useful and important for the children, as they received relevant support, learned about the students’ challenges and experienced a high degree of participation. Involving the schools in the intervention meant widening the possibilities for environmental adaptations, which was an important aspect of the intervention. The involvement of schools was also central to parents’ acceptability of the intervention. Few educators have the training and knowledge needed to adequately monitor and ensure the fit between the students’ learning needs and environmental adaptations [
45], despite schools regularly serving as long-term service providers [
46]. At the same time, the teachers’ class perspective made them elaborate on the time spent on this student as opposed to other students with just as legitimate needs. Moreover, the value of the CICI was more unclear to the schools than to the parents. The teachers acknowledged that the intervention benefitted the children and their well-being, but that it was difficult to fully understand the children’s need for academic support. The logic of treatment and rehabilitation can be difficult to translate into the logic of education [
47]. In future RCTs, continued attention to the challenges of integrating perspectives from the health and educational systems should be prioritized. However, some of the teachers’ challenges to acceptability were related to a lack of understanding from their school leaders, which is related to the school organization and not the intervention per se. There is a need to increase school buy-in and engagement and better educate school leadership, so they are willing to free up teacher time to participate. In the final RCT, efforts will be made to invite, better inform, and retrieve a clear consent for participation from the teachers’ leaders.
Methodological considerations
One strength of the interview study was the inclusion of children, parents, and teachers. For some children, their impairment made it difficult to provide answers to the questions during the interviews but was enabled by their parents, as described previously. Therefore, it is sometimes difficult to delineate to what degree the parents’ experiences affected the answers for three of the children.
A strength of the feasibility study was that the children participated to a large degree, although from the perspectives of the parents and teachers of the most severely injured children, the intervention’s usefulness did not necessarily seem to depend on child participation. The feasibility study included neither families of children whose parents did not live together or single-parent households nor how the intervention might be working if the schools chose not to participate. In addition, the participating children in this study skewed older than the full age range for the intervention, the experiences of younger children is unknown. The consequences this will have on the experience of participation, acceptability and what mechanisms of change might be working must be addressed in future evaluations of the full RCT. Future qualitative studies targeting these groups may be warranted prior to implementing the full RCT. To offer an appropriate rehabilitation path to the individual child, future rehabilitation research should continue to investigate the combination of minimum cognitive abilities, level of awareness and emotional readiness for them to be able to engage successfully in a particular treatment such as the CICI.
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