Psychological Interventions for Individuals With Acquired Brain Injury, Cerebral Palsy, and Spina Bifida: A Scoping Review

Background: With current medical advancements, more adolescents with neurodevelopmental disorders are transitioning from child- to adult-centred health care services. Therefore, there is an increasing demand for transitional services to help navigate this transition. Health care transitions can be further complicated by mental health challenges prevalent among individuals with cerebral palsy (CP), spina bifida (SB), and childhood onset acquired brain injury (ABI). Offering evidence-based psychological interventions for these populations may improve overall outcomes during transition period(s) and beyond. The objective of this scoping review is to identify key characteristics of psychological interventions being used to treat the mental health challenges of adolescents and adults with CP, SB, and childhood onset ABI.

Methods: Methodological frameworks by Arksey and O'Malley, and Levac and colleagues were used to explore studies published between 2009 and 2019. Included studies were required to be written in English and report on a psychological intervention(s) administered to individuals at least 12 years of age with a diagnosis of CP, SB, or childhood onset ABI. All study designs were included.

Results: A total of 11 studies were identified. Of these, eight reported psychological interventions for childhood onset ABI, while three reported on CP. No studies reporting on SB were identified. Commonly used interventions included acceptance and commitment therapy (ACT), psychotherapy, and cognitive behavioral therapy (CBT).

Conclusions: There are a limited number of studies investigating psychological interventions for individuals with childhood onset ABI and CP, and none for individuals with SB. Further research into effective psychological interventions for these populations will improve mental health outcomes and transitional services.

Introduction

Neurodevelopmental disorders, including cerebral palsy (CP), spina bifida (SB), and childhood onset acquired brain injury (ABI) are complex medical conditions that may impact multiple aspects of a child's life, including his/her physical and psychological wellbeing (1, 2). Individuals with these conditions often require life-long health care management to reach occupational goals and their fullest potential (3, 4). In the past, children with neurodevelopmental disorders were often not expected to survive into adulthood; however, with current medical advancements, more than 75% will live to adulthood (2, 3, 5). This increase in longevity has subsequently led to an increase in the number of children transitioning from child- to adult-centered health care (6).

The transition from child- to adult-centered health care services is a complex and difficult process (7–9). Numerous studies have reported many transitional services are not coordinated to meet both physical and psychosocial needs (5, 10–13). Indeed, the transition process can further be complicated by psychological difficulties individuals with CP, SB, and childhood onset ABI may experience. Mental health difficulties such as anxiety, depression, and lower self-esteem have been found to be more common among young adults with neurodevelopmental disorders (10, 14, 15). For example, individuals with CP are more likely to experience poorer mental health compared to those without CP (16, 17). It has also been reported that 41–48% of young adults (14–21) with a diagnosis of SB experience depression compared to 10.9% of their typically developing peers (18). Furthermore, individuals with mild to severe traumatic brain injury (TBI) are at a significantly higher risk of developing psychiatric disorders, such as anxiety or depression, compared to their same aged peers (19). Adults with childhood onset conditions are also more likely to experience a lack of community involvement, decreased social skills, peer rejection, and social stigma in comparison to others (2, 20, 21). These psychosocial difficulties can further complicate one's experience of navigating the health care system and managing chronic health conditions.

Psychological interventions may be one option to address these significant concerns (22, 23). Commonly used effective psychological interventions for the general population include cognitive behavioral therapy (CBT) (24, 25), psychotherapy (25), and mindfulness or other relaxation techniques (26, 27). Although many studies have been published investigating the effectiveness of psychological interventions for the general population, literature summarizing psychological interventions and its effectiveness for individuals with neurodevelopmental disorders is lacking (22, 23) (i.e., lack of recognition of the “emotional life” of adults with neurodevelopmental disorders), despite the population's increasing psychological difficulties.

Further exploration of the various psychological interventions for individuals with CP, SB, and childhood onset ABI is essential to improve transitional health care services. By examining the extent of published literature on psychological interventions, gaps within this area of research will be identified and provide insight into potential treatments for mental illnesses these populations experience (22, 23). Thus, the purpose of this scoping review is to (1) determine what psychological interventions have been reported in the literature/evaluated to treat mental health difficulties experienced by individuals with CP, SB, and childhood onset ABI; and (2) identify the key characteristics of these interventions for these populations and their effectiveness.

Methods

The current scoping review used the methodological frameworks proposed by Arksey and O'Malley (28) and Levac et al. (29) The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) (30) was used to inform the processes and reporting of this review.

Eligibility Criteria

To be eligible for inclusion, studies must have investigated the implementation of psychological interventions with individuals with CP, SB, and childhood onset ABI. Psychological interventions were defined as treatments focused on reducing psychological distress through counseling, support, interaction or instruction, with an aim to increase adaptive behavior (31). Examples of psychological interventions include CBT, mindfulness-based stress reduction, or psychotherapy. These interventions can be delivered face-to-face or online (e.g., video conferencing, social media), and be delivered one-on-one or in a group setting by any health care provider or health care provider trainee (i.e., we excluded those interventions that were delivered by a peer mentor). To ensure literature was relevant to the current health care system, only studies published within the last 10 years (e.g., from January 2009 to July 2019) were included. All study designs were included. Furthermore, only studies published in English were included.

Search Strategy

The literature search strategy was developed by the research team in collaboration with a Librarian (LP) with expertise in systematic and scoping review methods. The search included medical subject headings and text words related to adults with childhood onset disabilities (e.g., CP, SB, or ABI), and psychological interventions (e.g., CBT or mindfulness). Relevant literature was collected from: MEDLINE, CINAHL, EMBASE, and PsycINFO, to ensure literature was collected from a diverse range of disciplines. Appropriate wildcards were used to account for plurals and variations in spelling. The search strategy for MEDLINE can be found in an additional file (see Supplementary File 1). Reference lists from reviews were hand-searched to ensure literature saturation.

Study Selection

All study screening and selection occurred in Covidence (covidence.org), an online literature review tool. Titles and abstracts of studies identified were screened (i.e., level one screening). Full-text screening of potentially relevant articles (i.e., level two screening) was completed to determine final article inclusion. Both level one and level two screening were done independently by two reviewers (MJ and TP). Conflicts between reviewers were resolved through discussion to reach consensus.

Data Abstraction

Data abstracted included authors, year of publication, country of study, recruitment setting, mean age/age range, sample size, type of condition, key intervention characteristics, and the associated outcomes and their impact. Intervention characteristics reported were based on the Template of Intervention Description and Replication (TIDieR) framework (32).

Results

Study Selection

The literature search yielded 14,126 records. EMBASE, CINAHL, MEDLINE, and PsycINFO retrieved 2,293, 3,242, 3,092, and 2,199, respectively. Following duplication removal, 10,269 records remained. In level two screening, 241 full-text articles were assessed, with 230 articles being excluded. Reasons for exclusion included wrong interventions (e.g., not psychological interventions), wrong population (e.g., adult onset ABI), wrong outcomes (e.g., not mental health outcomes), wrong study design (e.g., review articles or editorials), and inability to locate full-text articles. For conference abstracts, attempts were made to contact authors for full-texts.

Following screening, 11 studies remained for final inclusion. Studies were summarized with a focus on key intervention characteristics by using the TIDieR framework. Figure 1 outlines the review process using the PRISMA-ScR.

FIGURE 1

Figure 1. PRISMA flow diagram adapted from Moher, Liberati, Tetzlaff, Altman, & the PRISMA group (2009).

Identified Studies

Included studies were conducted in the United States (33–37), United Kingdom (38, 39), Australia (40), Greece (41), Poland (42), and Italy (43). Studies were published between 2010 and 2018. Participant recruitment settings included community clinics, hospitals, universities, medical centres, and rehabilitation centres. Study sample sizes ranged from one to 49, with mean ages ranging from 6.87 to 15.9 years. Conditions studied included CP (36, 39, 41) and childhood onset ABI (33–35, 37, 40, 42, 43), consisting of TBI, with only one study having a variety of ABI conditions (40). No studies reported on interventions for SB. Detailed information of the included studies, including the intervention characteristics using the TIDieR framework and effectiveness/impact, can be found in Tables 1–3.

TABLE 1

Table 1. Summary of psychological interventions using the TIDieR framework items one through six.

Intervention Types

Commonly identified psychological interventions used with individuals with childhood onset ABI and CP were acceptance and commitment therapy (ACT) (34, 37, 38, 40), psychotherapy (39, 41), and CBT (33, 35, 36, 42, 43), in combination with components of family therapy (34), psychoeducation (33, 36, 43), and Stepping Stones Triple P (SSTP) (40). Studies reporting on ACT were limited to individuals with childhood onset ABI, while studies investigating the use of psychotherapy only included individuals with CP. In contrast, the studies evaluating CBT included individuals with both childhood onset ABI (33, 35, 42, 43) and CP (36). Intervention characteristics of each included study can be found in Tables 1, 2.

TABLE 2

Table 2. Summary of psychological interventions using the TIDieR framework items seven through 12.

ACT Intervention

ACT interventions focused on increasing awareness of symptoms of distress, accepting them, and noticing when one was trying to avoid the associated thoughts, feelings and/or sensations. Mindfulness and cognitive defusion were key techniques used. Interventions involved group therapy sessions (37, 38, 40), with one study involving individual sessions (34). Groups ranged from two to six people. ACT interventions were also used in combination with family therapy with parents and children with ABI (34), and in combination with Stepping Stones Triple P (SSTP), a parenting program aimed at preventing child behavioral and emotional difficulties (40). ACT interventions all occurred in person.

Psychotherapy Intervention

Psychotherapy interventions involved revisiting an individual's past experiences to determine how they may be affecting daily life in the present. Interventions also aimed to extract meaning and break down feelings associated with one's disability. Interventions were delivered during individual sessions with parental supervision (41), or during couple's therapy sessions (39). The two included studies occurred in person and utilized initial sessions to build a therapeutic relationship with the clients. For instance, Barnes and Summers (39) used the activity of drawing genograms to represent family relationships. Florou et al. (41) used systemic and psychodynamic approaches, which consider the problem to belong within a whole system (e.g., the person and all the people in his/her life), while also considering the client's feelings and wishes regarding relationships in his/her life.

CBT Intervention

CBT interventions involved cognitive restructuring by identifying automatic thoughts and replacing them with more positive thinking. Clients participated in activity scheduling, sleep scheduling, and relaxation techniques. CBT interventions were delivered face-to-face. Peterman et al. (36) conducted sessions with clients and their mothers, while McNally et al. (33) delivered CBT interventions individually or with both the client and his/her parents. Pastore et al. (43) engaged clients in CBT techniques such as cognitive meditation, positive and negative reinforcement, contingent reinforcement and shaping, while Peterman et al. (36) utilized CBT as exposure therapy. Aspects of psychoeducation were also integrated into sessions for both clients and their parents (33, 36, 43). Intervention settings included hospitals (35, 43) and university clinics (36).

Intervention Duration and Frequency

Individual sessions ranged from 45 min to 1.5 h, with many studies not indicating session duration (33, 38–40, 43). The majority of sessions occurred weekly (33, 37, 38, 41); however, some were twice or three times a week (42, 43). In the study by Peterman et al. (36), the frequency of sessions were tapered, starting with weekly sessions and progressing toward monthly sessions. Whiting et al. (38) provided clients with a 1-month break before the last session for relapse prevention. Interventions typically ranged from seven to 12 weeks (36–38, 40). In the study conducted by Pastore et al. (43), treatment duration ranged from 4 to 8 months, as treatment length was determined based on the participants' individualized needs. The longest treatment duration lasted 1 year (41, 42).

Intervention Provider

Individuals providing psychological interventions were labeled under the broad term of “therapist.” In the study by Barnes and Summers (39), the therapist was completing an educational placement under the supervision of a therapist. In three of the 11 studies, psychologists facilitated sessions (33, 40, 42), while McCarty et al. (35) had psychologists and licensed therapists facilitate sessions. McNally et al. (33) identified a licensed clinical psychologist specializing in neuropsychology, or doctoral and postdoctoral-level neuropsychology “trainees” under supervision providing interventions. In terms of additional training to therapists providing interventions, one study indicated that training was provided in order to conduct SSTP (40).

Intervention Effectiveness/Impact

The majority of ACT, CBT, and psychotherapy interventions were reported to be effective for the treatment of mental health symptoms in individuals with CP and ABI. Intervention outcome measures and findings can be found in Table 3.

TABLE 3

Table 3. Summary of included studies' (n = 11) outcome measures and findings.

ACT interventions were reported to significantly decrease anxiety in individuals with post TBI mental health difficulties (34), decrease psychological distress in individuals with severe TBI (38), and decrease avoidance of thoughts and emotions, leading to greater life activity participation (37). When used with SSTP, ACT interventions were found to decrease problem behaviors, and significantly decrease emotional symptoms in individuals with ABI, compared to individuals receiving usual care (40).

Psychotherapy intervention impact was reported in terms of the therapists' opinions on patient progress, rather than the use of outcome measures (39, 41). For example, in the study by Florou et al. (41), the therapist stated psychotherapy was successful as the participant was better able to discuss anxieties and worries and process past traumas.

CBT interventions were effective in reducing depressive symptoms (35, 42, 43), improving emotional function as per parent reports (33), reducing anxiety levels (36, 42, 43), and decreasing behavioral and psychological problems (43). However, when investigating the maintenance of treatment effects post-intervention, mixed findings were reported. Individuals who received ACT and SSTP returned to baseline emotional symptoms after 6-months (40), while individuals receiving CBT continued to decrease in anxiety levels 1-month post-treatment (36).

In addition to the effectiveness of the interventions, two studies considered moderating/mediating variables of the main outcomes. For example, Golinska and Bidzan (42) considered participants' levels of engagement during interventions and its influence. With this, intervention success was affected by client engagement levels (42); with increased engagement associated with increased psychological resources and decreased depressive symptoms (42). Additionally, McNally et al. (33) examined whether length of time since ABI would influence participants' successful outcomes with a given intervention; however, it was found to have no effect.

Discussion

The purpose of this scoping review was to: (1) determine what psychological interventions have been reported in the literature/evaluated to treat mental health difficulties experienced by individuals with CP, SB, and childhood onset ABI; and (2) identify the key characteristics of these interventions and their effectiveness. A total of 11 studies were included. The psychological interventions identified were ACT, CBT, and psychotherapy, in combination with family therapy, psychoeducation, and SSTP. No studies included individuals with SB. Included studies investigating childhood onset ABI mainly focused on concussions (e.g., mTBI), and TBI, which may limit the generalizability to all individuals with childhood onset ABI. The absence of studies on SB and a variety of ABI conditions, reveals the need for future research in these populations. The low yield of studies available for data abstraction highlights the need for further evidence and psychological support for these populations.

The most commonly reported psychological interventions leading to improved psychological outcomes, included CBT, ACT, and psychotherapy. Included studies provided evidence that CBT interventions decreased behavioral and psychological problems in children and adolescents with mild to moderate TBI (33, 35, 43), stroke (42), and CP (36). These results are similar to other literature investigating the effectiveness of CBT for reducing mental health symptoms amongst individuals with autism spectrum disorder (ASD) (44–46) and amongst individuals with epilepsy (47, 48). In a meta-analysis by Perihan et al. (44), findings from 23 studies suggested CBT interventions produced moderate changes in anxiety levels in children with ASD. Additionally, in a study by Carbone et al. (47), adolescents with epilepsy reported improved mental health and social functioning after completing a six module-based CBT intervention.

ACT intervention protocols were shown to improve mood and psychological outcomes in children and adults with childhood onset mild to severe TBI (34, 37, 38) and pediatric ABI (40). These findings are similar to results reported in a study by Pahnke et al. (49), looking at ACT-based skills training groups for adolescents and young adults with high-functioning ASD. The 6-week intervention was aimed at teaching participants acceptance and mindfulness skills to better deal with difficult thoughts, emotions, and bodily sensations (49). Positive outcomes were reported from both self- and teacher-reports in regard to decreased stress, hyperactivity, prosocial behavior and emotional symptoms (49).

Lastly, psychotherapy interventions were subjectively reported to improve mental health outcomes in individuals with CP (39, 41). Similar findings were found in individuals with ASD receiving psychotherapy interventions (50, 51). In a study by El-Ghoroury and Krackow (51), psychotherapy interventions resulted in decreased emotional outbursts with a client with ASD.

The findings from this review revealed heterogeneity in terms of key characteristics of intervention protocols across studies. Therefore, it is difficult to determine which intervention characteristics are associated with improved outcomes. Furthermore, some items of the TIDieR framework were also not described in the included studies, making it difficult to comprehensively describe the psychological interventions.

For many of the included studies, study protocols were tailored to the particular client in regard to length of treatment (33, 35), aspects of the intervention the client required (e.g., individualized treatment plans) (41, 43), and how material was presented (39). For example, the Modular Approach to Therapy for children with Anxiety, Depression, Trauma and Conduct problems (MATCH-ADTC), uses individualized treatment through the use of treatment modules (52). Modules can be repeated, or additional modules can be added, depending on the patient's response to treatment. This flexible and tailored treatment intervention has been reported to outperform usual care in youth with depression, anxiety, and conduct problems (53). Personalized interventions should utilize evidence-based methods to successfully tailor mental health treatment to clients (54). Evidence-based methods facilitate individualized mental health treatment planning and tailoring by assisting clinicians in determining what order to target problems, and what treatments to combine (53, 54). However, even when utilizing personalized interventions, not all intervention protocols may be feasible or beneficial for all clients with CP, SB, or childhood onset ABI. Future studies should seek to determine and understand how and why interventions are beneficial to certain individuals (54).

We acknowledge several strengths of this scoping review. This review benefitted from an extensive literature search conducted by an experienced informational specialist. The screening and extraction process were completed by two researchers independently. This review was also guided by two well-known frameworks, including PRISMA and TIDieR, ensuring both quality and transparency of studies included.

It is also important to acknowledge the limitations of this review. First, the literature search was limited to the last 10 years (e.g., 2009–2019), potentially excluding relevant studies published prior to 2009. Second, non-English studies were excluded, potentially creating a bias for English-speaking countries. Third, studies were excluded if they reported on non-traditional interventions such as music therapy or art therapy. Therefore, included studies may not encompass all interventions available. Fourth, the review is limited by a small number of available publications. Many articles did not include participant ages, therefore relevant studies may have been excluded. Relatedly, we included studies involving any participants age 12 and older (i.e., provided the studies met the other inclusion criteria). This meant including some studies with much younger children (e.g., 43, 46). While our original intent was to only include those studies with ≥50% of the sample age 12 and older, upon reviewing these studies, it was not possible to determine the proportion of the sample over the age of 12. Thus, we included these studies as a conservative measure given the relatively low yield of included studies for data abstraction. In the case of the studies involving psychotherapy interventions, impact was reported in terms of the therapists' opinions on patient progress, rather than the use of outcome measures. Lastly, the majority of the studies included small sample sizes, primarily being case studies. Case studies can be considered one of the least rigorous designs, with limited generalizability (55).

Conclusions

This scoping review aimed to synthesize information regarding psychological interventions being evaluated for individuals with childhood onset ABI, CP and SB. CBT, psychotherapy and ACT were found to be effective interventions by decreasing mental health symptoms. Upon completing CBT, psychotherapy, or ACT, individuals with CP and childhood onset ABI, mainly TBI, experienced decreased anxiety, depressive symptoms, and psychological distress. The lack of literature pertaining to interventions for individuals with SB and different types of ABIs (e.g., tumors), in particular, highlights a need for future research within these populations. With modifications and personalization for these individuals, psychological intervention/treatment hold the potential to improve mental health outcomes and transitional care services.

Author Contributions

LP ran the search strategy in the various databases. MJ and TP screened articles and abstracted data. All authors contributed equally to this work. All authors developed the search strategy and read and approved the final manuscript.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary Material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fped.2022.782104/full#supplementary-material

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