Challenging behaviour, activity, and participation following acquired brain injury: a scoping review of interventions delivered by allied health professionals
Sue Sloan
A * , Em Bould A B and Libby Callaway A B
A
B
Abstract
This scoping review aimed to identify literature describing allied health interventions used to address challenging behaviour for adults with an acquired brain injury (ABI) living in community settings and identify the impact of these interventions on outcomes across the domains of behaviour, activity, and participation.
The Polyglot Search Translator for scoping reviews guided the search of six databases: (1) Ovid Medline®, (2) EmCARE (Ovid), (3) CINAHL Complete, (4) Embase (Ovid), (5) Scopus, and (6) Cochrane Library to identify literature published between 1990 and 2023.
Of the 1748 records screened, 16 articles met the inclusion criteria. Studies commonly described therapeutic, least restrictive approaches to challenging behaviour founded on a positive behaviour support framework. Interventions were individualised, combining multiple elements to effect change in the environment, behaviour of the people providing support, and/or skills and behaviour of the person with ABI. Although most studies reported clinical gains from intervention, study designs used a range of methods and either single cases or mixed populations.
The findings of this review suggest that allied health interventions have the potential to reduce challenging behaviour experienced by people with ABI. However, further research addressing the impact of interventions on activity and participation is required to inform clinical practice and improve long-term outcomes.
Keywords: activity and participation, allied health professional, behaviour of concern, brain injury, challenging behaviour, intervention, positive behaviour support.
Introduction
Challenging behaviours are a common outcome of severe brain injury (Sabaz 2012) and have been identified as one of the most serious and chronic sequelae that require management to reduce the associated burden for both the person with an acquired brain injury (ABI) and their caregivers (Hendryckx et al. 2023b). Challenging behaviour can manifest in a range of ways (Kelly et al. 2008; Sabaz et al. 2014; Simpson et al. 2014; Hendryckx et al. 2023a), with inappropriate social behaviour, verbal aggression, and adynamia (lack of initiative or apathy) most frequently reported in community settings (Kelly et al. 2008; Sabaz et al. 2014). Individuals with ABI often present with several domains of behavioural challenge (Kelly et al. 2008; Sabaz et al. 2014), although a single behaviour might dominate the clinical presentation (Kelly et al. 2008).
Positive behaviour support (PBS) (Carr et al. 2002) is the intervention framework that prevails in studies addressing challenging behaviours following ABI. Although evidence for PBS has been best established in the area of developmental disability (Carr et al. 2002; LaVigna and Willis 2005; McClean et al. 2007; Bigby et al. 2020; Gore et al. 2022; Hayward et al. 2023), the approach was extended into the field of brain injury in the early 2000s (Rothwell et al. 1999; Ylvisaker et al. 2003; Feeney 2010). In the field of wABI, Ylvisaker et al. (2003) described PBS as an approach that ‘highlights antecedent supports, natural consequences, context-sensitive interventions and person-centred planning’ (p. 12). Cognitive impairment (particularly affecting executive functions) and communication difficulties associated with ABI impact behavioural presentations (Medd and Tate 2000; Wood and Alderman 2011; LaVigna and Willis 2012; Sabaz 2012; Sabaz et al. 2014; Soendergaard et al. 2019; Hendryckx et al. 2023a; Jeffay et al. 2023; Mackey et al. 2023). In a community setting, the management of cognitive impairment is typically integrated into PBS interventions (Ducharme 2000; Ager and O’May 2001; Todd et al. 2004; Ylvisaker et al. 2005, 2007; Kelly et al. 2008; McDonald et al. 2008; Beaulieu et al. 2023).
Challenging behaviours have been identified as chronic sequelae that may increase over time after brain injury (Johnson and Balleny 1996; Ponsford et al. 2014; Simpson et al. 2014; Andelic et al. 2019; Ruet et al. 2019) and so require long-term support (Knox and Douglas 2018; Topping et al. 2024). Impoverished activity and life role participation are common following ABI (Doig et al. 2001; Winkler et al. 2005; Kersey et al. 2020; Klepo et al. 2022; Tate et al. 2014), with challenging behaviour a contributing factor to poor outcomes (Winkler et al. 2006; Sabaz et al. 2014; Simpson et al. 2014). For instance, Sabaz et al. (2014) reported that only 5.8% of the 276 study participants who experienced challenging behaviour achieved a ‘good’ level of reintegration across the three community participation areas of work and leisure, relationships, and life skills explored via the Sydney Psychosocial Reintegration Scale (Tate et al. 2011). Furthermore, participation rates were an independent predictor of challenging behaviour, suggesting a bi-directional relationship whereby low levels of participation contributed to higher levels of challenging behaviour (Sabaz et al. 2014).
Community-based allied health professional (AHP) interventions used to facilitate activity and participation outcomes are complex and require a multi-pronged approach to address the individual’s range of neurobehavioural disabilities, including cognitive, communication, physical, sensory, and psychosocial factors (Knox and Douglas 2018; Mahar and Fraser 2011; Hauger et al. 2022). The presence of challenging behaviour creates additional complexities that can prove testing for AHPs (Doig et al. 2008). For example, recent Australian research highlighted that PBS is a difficult approach to learn (Analytis et al. 2023), and only 22% of occupational therapists working with adults with neurological disorders utilised PBS interventions (Nott et al. 2020). Others have reported that lack of experience and training can impact an AHP’s confidence in working with people with challenging behaviour (Beaulieu 2007; Carmichael et al. 2020, 2021), and clinicians’ stress levels may be high when working in this area (Sabaz 2012).
Although the link between persistently high rates of challenging behaviour and low levels of participation in people with severe brain injury has been demonstrated, many questions remain about how to positively influence long-term outcomes. This scoping review sought to address three research objectives: (1) describe the characteristics of people with ABI living in community settings who received AHP interventions to address challenging behaviour; (2) investigate the features of these interventions; and (3) investigate their impact on outcomes for people with ABI across the domains of behaviour, activity, and participation.
Methods
A scoping review method was deemed most suitable for this study to examine the extent, range, and nature of the evidence available, given that it was likely to be heterogeneous in terms of the methods used, participants, and details of interventions (Tricco et al. 2018).
Search strategy
The Polyglot Search Translator (Clark et al. 2020) for scoping reviews guided the methods and reporting. The research team developed a comprehensive search strategy with a university research librarian. Pilot testing of the drafted strategy was undertaken across six databases, with amendments made to ensure the search was optimised. Once the protocol had been piloted, the finalised search strategy was documented and registered a priori on the Open Science Framework on 11 August 2023 (Sloan et al. 2023). Using this protocol, six databases (Ovid Medline®, EmCARE (Ovid), CINAHL Complete, Embase (Ovid), Scopus, and Cochrane Library) were searched (using the search strategy example outlined in Supplementary Table S1) by the first author, with input from the university librarian, between the 11 and 18 August 2023. Search terms included variations and truncations of terms relating to brain injury, challenging behaviour, and allied health interventions. Reference lists of journal articles identified in the scoping review were hand-searched for any additional, relevant publications that met the study inclusion criteria.
Study selection
EndNote (EndNote X8, Clarivate Analytics, Philadelphia, PA, USA) was used to store and manage the search yield and remove identified duplicates. The 1829 retrieved publications were then uploaded to an online abstraction tool (Covidence systematic review software, Melbourne, Victoria, Australia) to support the screening process, and a further 81 duplicates were identified and removed. Informed by the a priori protocol (Sloan et al. 2023), a checklist of inclusion and exclusion criteria was developed (see Table 1). Two reviewers independently screened the remaining 1748 publications by title and abstract using these criteria. Those studies potentially noted for inclusion were accessed, and full-text articles were uploaded to Covidence by the first author. Two reviewers then conducted an independent full-text review. Key reasons for the exclusion of the studies were documented in Covidence. Conflicts were discussed once the independent review of full-text publications had been completed. If not resolved, the publication/s in focus underwent review for inclusion/exclusion by a third person. Search results were summarised through a PRISMA extension for Scoping Reviews (PRISMA-ScR) flow diagram (Tricco et al. 2018) – see Fig. 1.
Data extraction
A customised data extraction table was developed using Microsoft Excel (Microsoft Excel 365, Microsoft Corporation, Redmond, WA, USA), with extraction of 10% of the total included publications undertaken independently by two reviewers and then compared for consensus. Disagreements were resolved via discussion with the third author. The first author then completed data extraction on the remaining included articles. The three investigators (S. S., L. C., and E. B.) checked and reviewed the final extraction table.
The spreadsheet captured the following information: author, title and year, journal, country of research, study design, sample size, injury details, methodology used, challenging behaviour(s) targeted, intervention type and duration, AHPs involved, outcome measures and results, and follow-up. The Behaviour Support Elements Checklist (BSEC) (Kelly and Simpson 2023) was used to categorise and narratively report details of interventions. The BSEC was developed to gather information about the multiple intervention elements used in the previously reported case series of participants with sexualised behaviour (Kelly et al. 2022). The BSEC lists three key targets of therapeutic intervention to effect behaviour change, that is, whether the intervention element is aimed at: (1) changing the individual by increasing their self-management; (2) the support network by changing their behaviour towards the client; and/or (3) the environment by changing structures, aids, or safeguards. Each of the three domains has an item, ‘other,’ to allow for a greater range of interventions than captured in the sub-items listed on the checklist.
Results
A total of 1748 publications were screened by title and abstract. Eighty-three articles met the study inclusion criteria or required further examination to check eligibility and thus were retrieved for full-text review. Of these, 70 were excluded for the following reasons: three were not in the inclusion criteria date range; 30 did not study an intervention; 27 did not describe an intervention in a community setting; five did not identify challenging behaviour as the focus of the intervention; and five were not peer-reviewed studies. A manual search of the reference lists of the remaining 13 articles identified three more studies, resulting in 16 publications that met the inclusion criteria (see Fig. 1 and Table 2).
| Authors (year) | Design | Injury type (n) | Indicator of injury severityA | Time post-injury | Challenging behavioursB | |
|---|---|---|---|---|---|---|
| Carnevale (1996) | Program evaluation | ABI (n = 17) | LOC: mean 5.9 weeks (s.d. 5.5) | Not reported | Verbal and physical aggression, inappropriate touching, lack of activity engagement, self-harm, socially inappropriate behaviour | |
| Carnevale et al. (2006) | RCT | TBI (n = 37) | LOC: greater than 24 h for 91% of the total sample | 7.6 years (range and s.d. not reported) | Verbal and physical aggression and socially disinhibited behaviour | |
| Davis and Outturn (1994) | Experimental | TBI (n = 6) | Not stated | Not reported | Lack of initiation | |
| Feeney and Achilich (2014) | SCED | TBI (n = 1) | Bilateral frontal lobe injury | 17 years | Physical aggression towards staff, property destruction, refusal to participate in activities, threats of physical harm against other program participants | |
| Feeney et al. (2001) | Descriptive | ABI (n = 80) | Severe challenging behaviours necessitating removal from the community | 7.3 years (range and s.d. not reported) | Verbal aggression, physical aggression, sexually inappropriate behaviour, non-compliance | |
| Gerber and Gargaro (2015) | Program evaluation | ABI (n = 78) | Moderate to severe | 7.7 years (s.d. = 10.01) | Inappropriate social behaviours, aggression, inappropriate sexual comments, perseverative behaviour | |
| Gould et al. (2022) | Descriptive | ABI (n = 44) | Severe | 9.0 years (s.d. = 6.8) | Verbal aggression, inappropriate social behaviour, lack of initiation, perseverative behaviour, physical aggression, inappropriate sexual behaviour, wandering/absconding | |
| Gould et al. (2021) | Case series | ABI (n = 3) | Severe to catastrophic | 11.7 years (range = 8–15) | Verbal aggression, perseveration, socially inappropriate behaviour, lack of initiation, physical aggression | |
| Kelly and Simpson (2011) | SCED | ABI (n = 1) | Global and extremely severe impairment on neuropsychological assessment | 5 years | Inappropriate sexual behaviour, including sexualised talk, non-genital touching, exhibitionism, public masturbation, genital touching, sexual coercion; and co-morbid verbal and physical aggression against others | |
| Kelly et al. (2022) | Case series | ABI (n = 27) | DRS: mean 8.5 (s.d. 5.13); CANS: mean 6.2 (s.d. 1.7) | 12.8 years (s.d. = 8.43) | Inappropriate sexual behaviour, including sexual talk, non-genital touching, exhibitionism, public masturbation, genital touching, and sexual coercion | |
| Lane-Brown and Tate (2010) | SCED | TBI (n = 1) | PTA greater than 116 days | 3.6 years | Apathy | |
| Ponsford et al. (2022) | RCT | ABI (n = 49) | Severe | 8.1 years (s.d. = 1.5) | Verbal aggression, inappropriate social behaviour, lack of initiation, perseverative behaviour, physical aggression, inappropriate sexual behaviour, wandering/absconding | |
| Tate et al. (2020) | SCED | TBI (n = 7) | PTA length mean: 76.6 days (range = 7–180 days) | 8.7 years (range = 3.5–14) | Apathy | |
| Treadwell and Page (1996) | Case study | TBI (n = 1) | Severe | 13 years | Severe verbal and physical aggression, spitting, self-injury (face slapping) and property destruction, non-compliant and combative behaviour in the context of daily living activities | |
| Willis and LaVigna (2003) | Case study | TBI (n = 1) | LOC: 2 weeks | 3 years | Physical aggression, verbal aggression, property destruction, absconding and inappropriate behaviour towards females | |
| Yody et al. (2000) | Case study | TBI (n = 1) | Skull fracture, subarachnoid haemorrhage, and contusions | Not reported | Verbal and physical aggression, property damage, absconding, medication refusal |
ABI, mixed aetiology including traumatic or hypoxic brain injury, or stroke, or penetrating head injury; TBI, traumatic brain injury only.
Participant characteristics
The first aim of the scoping review was to identify the characteristics of people with ABI living in community settings who received AHP interventions to address challenging behaviour. Details regarding participant characteristics within these 16 studies are provided in Table 2. Three articles (Gould et al. 2021, 2022; Ponsford et al. 2022) reported separate aspects of the results of the same intervention delivered to the same study participants. Accounting for this single group of participants across three studies, and with participant dropout rates also accounted for, findings reported in this review reflect the outcomes for 279 people with ABI.
The number of participants recruited for the included studies ranged from 1 to 80. Five studies screened participants for exclusion criteria, which included pre- or post-injury psychiatric comorbidities of various severity levels (Gould et al. 2021, 2022; Kelly et al. 2022; Ponsford et al. 2022); participation in concurrent behavioural intervention (Gould et al. 2021, 2022; Ponsford et al. 2022); unstable accommodation (Gould et al. 2021); living in long-term care homes (Gerber and Gargaro 2015); and co-morbid diagnoses of intellectual disability or progressive neurological conditions (Kelly et al. 2022).
Injury severity was described by authors in a range of ways, with the various indicators highlighting that participants mostly had severe brain injuries and were most often at least two or more years post-injury. This participant profile was evident in the detailed case descriptions of 18 participants provided across 9 of the 16 studies (Carnevale 1996; Treadwell and Page 1996; Yody et al. 2000; Willis and LaVigna 2003; Lane-Brown and Tate 2010; Kelly and Simpson 2011; Feeney and Achilich 2014; Tate et al. 2020; Gould et al. 2021). The mean age of these 18 participants was 39.8 years (range = 24–59 years). They were, on average, 9.3 years post-injury (range 3.6–17 years), highlighting the typical period of young adulthood during which brain injuries can be sustained and the chronicity of challenging behaviour.
The authors listed a wide range of challenging behaviours and combinations of multiple behavioural domains as being present and targeted for intervention. These behaviours included verbal aggression; physical aggression against objects, self and other people; inappropriate sexual behaviour; perseveration; absconding; inappropriate social behaviour; and lack of initiation or apathy (see Table 2). Five intervention studies targeted a specific category of challenging behaviour being inappropriate sexual behaviour (Kelly and Simpson 2011; Kelly et al. 2022) or apathy (Davis and Outturn 1994; Lane-Brown and Tate 2010; Tate et al. 2020). All other studies developed interventions addressing multiple types of behavioural challenges. As an example of this, Willis and LaVigna (2003) developed a comprehensive intervention for their single study participant, who displayed physical aggression against other people and objects, verbal aggression, absconding, and inappropriate social behaviour.
Features of interventions
The second aim of this scoping review was to investigate the features of the intervention programs developed by AHPs to address challenging behaviour and identify the impact of interventions on participant outcomes across the domains of behaviour, activity, and participation.
Details of professionals from allied health disciplines who designed and/or delivered interventions are provided in Table 3. Psychologists were involved in 11 of the 16 studies, and clinicians specialising in behaviour (e.g. behaviour analysts, behaviour therapists, and behaviour technicians) were involved in five studies. Eight studies reported the involvement of more than one discipline, with the following mentioned in at least one study: occupational therapist (n = 3), speech pathologist (n = 2), rehabilitation counsellor (n = 1), case manager (n = 1), and therapist (unspecified) (n = 2). Two studies noted the support of a multidisciplinary team (Carnevale 1996; Yody et al. 2000). Three studies reported that the AHPs designing or delivering behaviour support were provided with supervision (Carnevale 1996; Carnevale et al. 2006; Ponsford et al. 2022).
| Authors (year) | Name/type of intervention program | Country | AHPs | Duration of intervention | Outcome measureA | Findings on measures of behaviour, activity, and participation | Maintenance | |
|---|---|---|---|---|---|---|---|---|
| Carnevale (1996) | Natural Setting Behaviour Management (NSBM) training | USA | Rehabilitation counsellor and behaviour technician, supervised by neuropsychologist. Supported by MDT | 12 months | Frequency, duration, and severity of identified observable, measurable target behaviours | 82% improvement in target behaviours in 11 participants who completed the program, 51% of change occurred in the education phase and a further 27% in the intervention phase. | Behavioural gains maintained 12 months post-intervention | |
| Carnevale et al. (2006) | Natural Setting Behaviour Management (NSBM) training | USA | Clinical psychologist and behaviour technician, supervised by clinical neuropsychologist | 17 weeks | Frequency of target behaviours. | No significant differences in target behaviour frequency between the control (n = 13) and two intervention groups (education n = 14 and NSBM n = 13). | 16 weeks post-baseline, there was no significant difference in target behaviours between the three groups. | |
| 30-week post-baseline NSBM group target behaviour significantly reduced compared to the education only group (but not the control group) | ||||||||
| Davis and Outturn (1994) | Group-oriented contingency management | USA | Psychologists | 12 weeks | Percent of time engaged in target behaviour (active leisure) using a time-sampling procedure | Engagement in active leisure increased for 4/6 participants | Gains for one participant were maintained for 1 week when contingency was removed | |
| Feeney and Achilich (2014) | Individualised PBS – ‘structured flexibility’ | USA | Behavioural psychologist | Not stated | Frequency of target challenging behaviours and percent of assigned tasks completed | The frequency of participant, Genny’s three targeted challenging behaviours declined. The percentage completion of three tasks increased. | Genny’s continued participation in the day program group was reported to be ‘successful with few behavioural issues.’ | |
| Feeney et al. (2001) | New York State Home and Community Based Services Traumatic Brain Injury Waiver Program and the State Behaviour Resource Project | USA | Behavioural psychologists | 3–4 years | Maintenance of community placement and costs | Relative to baseline (i.e. when participants were living in residential or treatment settings), 80 participants were supported in the community, with the average cost saving by the second or third year of the program of $57.50/day/person | 3–4 years after program commencement, 82% of the 1996 and 89% of the 1997 cohort still lived in the community, with customised support. | |
| Gerber and Gargaro (2015) | Day activity program and individualised behaviour support | Canada | Behaviour therapist, case manager, rehabilitation therapists | 6 months | CIQ; OBS-CWS; GAS | 70% of group participants had challenging behaviours identified. | Not reported. However, seven participants re-enrolled as challenging behaviours had increased. | |
| Their OBS-CWS reduced but not significantly. Significant increase in CIQ scores from a baseline mean of 10.2–12.25 | ||||||||
| Gould et al. (2022) | PBS + PLUS | Australia | Neuropsychologist, occupational therapist, or speech pathologist. Supervised by a behavioural psychologist | Up to 12 months | GAS | 153/182 (84.6%) GAS goals were achieved. Of those, outcomes for 97 goals (53.3%) were exceeded. 18 goals regressed at the final review. 16 goals not included as no longer clinically relevant | Not reported | |
| Gould et al. (2021) | PBS + PLUS | Australia | Neuropsychologist, occupational therapist, or speech pathologist. Supervised by a behavioural psychologist | Up to 12 months | OBS-CWS, GAS | 2/3 cases reduced OBS-CWS score. | 16-, 20-, and 24-month follow-up OBS-CWS score – two cases no change, one further reduction in score | |
| 5/7 GAS goals achieved | ||||||||
| Kelly and Simpson (2011) | Individualised PBS, plus visits with sex worker | Australia | Psychologist | 7 months | OBS frequency of three target behaviours | In the final phase of the intervention, all types of inappropriate sexual behaviours were reduced to zero except for two incidents of sexualised talk. Co-morbid aggressive behaviour was also reduced to zero in the final phase. | Follow-up probes 1 and 2 years post-intervention indicated no relapse in inappropriate sexual behaviour or aggression. | |
| Kelly et al. (2022) | Individualised PBS | Australia | Psychologist | Mean 8.4 months (s.d. = 6.4) | OBS: severity and frequency scores | There was a significant reduction in the OBS ISX score, the OBS total severity score, and the OBS socially inappropriate behaviour. There was no significant change in the other OBS behavioural domains. | 17 participants were followed up at a mean of 2.2 years (1.3) post-intervention. A reduction in OBS ISX, OBS total severity, and OBS inappropriate social behaviour was maintained. | |
| Lane-Brown and Tate (2010) | Psychological therapy | Australia | Psychologist | 28 weeks | The number of minutes each day spent working toward each goal. AES, Apathy subscale of the FrSBe. NLQ, M2PI | Statistically significant treatment effects for Goals 1 and 2. No progress on the untreated, Goal 3 | The treatment effect was maintained for 1 month for Goal 1 but not Goal 2 | |
| Significant decrease in scores on the AES. Significant decrease in both self- and clinician ratings on the FrSBe Apathy subscale. | Reduced scores on Apathy measures were maintained at 1-month follow-up. | |||||||
| No treatment effect on the NLQ or M2PI | ||||||||
| Ponsford et al. (2022) | PBS + PLUS | Australia | Neuropsychologist, occupational therapist, or speech pathologist. Supervised by behavioural psychologist | Up to 12 months | OBS-CWS | There was a significant reduction in OBS-CWS scores in both groups, i.e. 24 intervention participants and 25 waitlist treatment as usual (TAU) participants. There was no significant difference between groups. | Gains were maintained for the intervention group at 20 months, after which challenging behaviour increased, but not to baseline levels. | |
| Tate et al. (2020) | Program for Engagement, Participation and Activities (PEPA). | Australia | Occupational therapist and psychologist | 17 weeks | GAS, NLQ, CIM | 6/7 participants increased the frequency of participation in targeted activity, as evidenced by GAS scores. Clinically significant improvement in generalisation measures varied among participants, including increased community participation and leisure activities. | 2- and 6-month follow-up data on the primary outcome measure, i.e. GAS not reported | |
| Treadwell and Page (1996) | Individualised PBS. | USA | Therapists | 6 weeks | Percent of intervals in which maladaptive behaviours were observed during 10-min sessions. | There was a clinically significant change over 25 sessions. In the final 17 sessions, the average occurrence of maladaptive behaviours was 3.9%, compared to 25% at baseline sessions. Compliance increased from 68% pre-treatment to 96% post-treatment in the home setting. | Not reported | |
| Willis and LaVigna (2003) | Individualised PBS. | USA | Behaviour analyst | 10 years | Frequency of each target behaviour | Rates of verbal aggression reduced. Rates of physical aggression fluctuated, but the intensity and duration of episodes reduced overall and instances of absconding halved. Instances of property damage were rare after 7 years. | Gains stable at 10 years. | |
| Yody et al. (2000) | Individualised PBS. | USA | Behaviour analyst and neuropsychologist, and MDT | 5 months | Frequency of each target behaviour | Reduction in the frequency of targeted behaviours | Gains largely maintained over 7 weeks |
The 16 studies described interventions delivered in three countries (USA, Canada, and Australia). Interventions shared many of the same features, reflecting common foundations in PBS. The studies reviewed offered varying levels of detail of the rationale and methodology for developing and implementing the selected interventions. Three authors described their model of intervention in additional detail in separate papers: (1) Feeney and Achilich’s (2014) model of PBS incorporating ‘structured flexibility’ was described in Feeney (2010), (2) Ponsford et al.’s (2022) PBS + PLUS approach was described in Gould et al. (2021), and (3) intervention focused on sexually inappropriate behaviours (Kelly et al. 2022) was described by Kelly and Simpson (2023).
Treatment length varied from 6 weeks (Treadwell and Page 1996) to 10 years (Willis and LaVigna 2003). Four studies provided interventions of varied intensity for 12 months or more (Carnevale 1996; Willis and LaVigna 2003; Yody et al. 2000; Ponsford et al. 2022). Only three studies reported the dosage of AHP intervention: (1) each of Tate et al.’s (2020) participants received 1 h a week of face-to-face intervention for 17-weeks, (2) Lane-Brown and Tate’s (2010) single-case experimental design (SCED) participant received 1 h a week of face-to-face intervention for 28 weeks, and (3) participants in Ponsford et al.’s (2022) randomised controlled trial (RCT) received a mean of 31.6 h of intervention (range = 8–78 h) delivered flexibly over a 12-month period. Their comparison treatment as usual (TAU) group received a mean of 6 h (up to 26 sessions) of intervention over the 12-month waitlist period (Ponsford et al. 2022).
The treatment elements of each of the 16 interventions were categorised according to the items on the three domains of the BSEC (Kelly and Simpson 2023) (see Table 4). All 16 studies incorporated elements focused on changing aspects of the environment to address challenging behaviour. Commonly, this included the implementation of structured daily routines and the provision of opportunities for increased engagement in meaningful activity, as well as written prompts, such as task lists (Lane-Brown and Tate 2010). Some studies supported this by introducing external cognitive aids; for example, Lane-Brown and Tate (2010) incorporated the use of a personal digital assistant. For a detailed example of interventions describing changing the environment by introducing activity, see Tate et al. (2020).
| Focus of change | Authors (year) | ||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Carnevale (1996) | Carnevale et al. (2006) | Davis and Outturn (1994) | Feeney and Achilich (2014) | Feeney et al. (2001) | Gerber and Gargaro (2015) | Gould et al. (2022) | Gould et al. (2021) | Kelly and Simpson (2011) | Kelly et al. (2022) | Lane-Brown and Tate (2010) | Ponsford et al. (2022) | Tate et al. (2020) | Treadwell and Page (1996) | Willis and LaVigna (2003) | Yody et al. (2000) | ||
| Environment | |||||||||||||||||
| Introduce supportive accommodation | √ | √ | √ | √ | |||||||||||||
| Introduce more structure/routine | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | ||||||
| Introduce meaningful/valued activities | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | ||
| Introduce other services | √ | √ | √ | √ | √ | √ | √ | √ | |||||||||
| Introduce legal representation/intervention | √ | ||||||||||||||||
| Modify the physical or sensory environment | √ | √ | √ | √ | |||||||||||||
| Support | |||||||||||||||||
| Provide debriefing/crisis management/counselling | √ | √ | √ | √ | |||||||||||||
| Provide general ABI education | √ | √ | √ | √ | √ | √ | √ | √ | √ | ||||||||
| Provide client-specific education | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | |||
| Construct rules of engagement for support personnel | √ | √ | √ | √ | √ | √ | √ | ||||||||||
| Implement restraints | √ | √ | √ | ||||||||||||||
| Specific behavioural techniques | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | ||||
| Person | |||||||||||||||||
| Compensatory strategies for ABI sequelae | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | |||||||
| Provide client-specific ABI education | √ | √ | √ | √ | √ | √ | |||||||||||
| Construct rules of engagement | |||||||||||||||||
| Formal contract | √ | √ | |||||||||||||||
| Cognitively based approaches | √ | √ | √ | √ | √ | ||||||||||||
| Other: skills training | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | √ | ||||||
| Other: psychological therapy | √ | √ | √ | √ | |||||||||||||
Fourteen studies developed plans that included changing the behaviour of the person/s with ABI by working directly with their support networks (see Table 4). Interventions provided by AHPs to formal (paid) and informal (family or friend) support networks included general education on brain injury and behaviour, as well as training and ongoing supervision in the delivery of structured behaviour support plans (BSPs). Illustrating this, Willis and LaVigna (2003) provided an example of changing the support network in their detailed case description of participant ‘Albert’. Three studies (Carnevale 1996; Treadwell and Page 1996; Yody et al. 2000) described environmental or physical restraints to manage risks to safety associated with physical aggression of the person with ABI.
Thirteen studies included specific approaches targeting individuals with ABI to increase self-management skills (see Table 4). A range of self-management strategies was described, predominately supporting participants in developing behavioural self-regulation skills. For a detailed example of self-management strategies, see Feeney and Achilich’s (2014) description of participant ‘Genny’. In contrast to these 13 studies, three (Treadwell and Page 1996; Willis and LaVigna 2003; Kelly and Simpson 2011) indicated that due to the severity of impairments, participants in their studies did not have the cognitive and memory capacity to learn techniques to self-regulate behaviour. Eleven of the 16 studies incorporated elements targeting all three categories of the BSEC, and many commonalities were described in the methodology underpinning their comprehensive interventions (Carnevale 1996; Carnevale et al. 2006; Yody et al. 2000; Feeney et al. 2001; Feeney and Achilich 2014; Gerber and Gargaro 2015; Tate et al. 2020; Gould et al. 2021, 2022; Kelly et al. 2022; Ponsford et al. 2022).
A key difference between the studies was whether the primary focus of the AHP was working face-to-face with the person/s with ABI or working with their formal and/or informal support networks. In seven studies, the behavioural intervention was designed by AHPs and delivered primarily by trained formal or informal supports (Treadwell and Page 1996; Feeney et al. 2001; Willis and LaVigna 2003; LaVigna and Willis 2005; Feeney and Achilich 2014; Gerber and Gargaro 2015; Kelly et al. 2022). In five studies, the people delivering the intervention were the AHPs themselves (Lane-Brown and Tate 2010; Tate et al. 2020; Gould et al. 2021, 2022; Ponsford et al. 2022). Although education for the support network was noted in all but one of these studies (Lane-Brown and Tate 2010), there was a greater emphasis on the AHP teaching the participant self-management skills.
Five case descriptions illustrated the process for integrating multiple intervention elements into a plan for individualised behavioural support (Carnevale 1996; Treadwell and Page 1996; Yody et al. 2000; Willis and LaVigna 2003; Feeney and Achilich 2014). In these five studies, planning was informed by a detailed assessment commonly referred to as a 'functional behaviour assessment'. The interventions described in these five studies emphasised the importance of providing structure and routine, engaging in meaningful activity, minimising antecedents to challenging behaviour, and prompting pro-social behaviours. No two interventions were the same across these studies, as they were tailored to numerous variables, including the individuals’ behavioural profile and the support and activity context in which behaviours were displayed. Decisions regarding the intervention’s focus, design, and implementation were made in consultation with the participant and/or their support network. Monitoring and revising the BSP and ongoing support and training, particularly for new support workers, were reported to assist in maintaining the plan’s integrity and guided adaptations as behaviour change occurred. A critical approach in all five of these studies was to continue collecting data during the intervention to monitor the effectiveness of the BSPs.
Impact of interventions
The impact of interventions focused on influencing behaviour, activity, and/or participation was measured using various methods and tools (see Table 3). Behavioural monitoring data were utilised in 10 studies to provide a baseline against which to assess the outcome of interventions (Davis and Outturn 1994; Carnevale 1996; Treadwell and Page 1996; Yody et al. 2000; Willis and LaVigna 2003; Carnevale et al. 2006; Lane-Brown and Tate 2010; Kelly and Simpson 2011; Feeney and Achilich 2014; Tate et al. 2020). This data were recorded by one or more of the following: trained observers, such as formal support networks (Davis and Outturn 1994; Carnevale 1996; Treadwell and Page 1996; Yody et al. 2000; LaVigna and Willis 2005; Carnevale et al. 2006; Kelly and Simpson 2011; Feeney and Achilich 2014); family members (Carnevale 1996; Carnevale et al. 2006; Lane-Brown and Tate 2010); and/or study participants themselves (Carnevale et al. 2006; Tate et al. 2020). Apart from the studies on apathy (Davis and Outturn 1994; Lane-Brown and Tate 2010; Tate et al. 2020), only one study utilised behaviour monitoring to track the frequency of pro-social replacement behaviours (Feeney and Achilich 2014).
In total, eight published tools were used as a primary or secondary outcome or generalisation measure of behaviour, activity, or participation. The Overt Behaviour Scale (OBS) (Kelly et al. 2006) was the most frequently used published measure of behaviour and was employed by five studies (Kelly and Simpson 2011; Gerber and Gargaro 2015; Gould et al. 2021; Ponsford et al. 2022; Kelly et al. 2022). Several indices can be generated from the OBS, including a clinical weighted severity score (OBS-CWS), which is the sum of the severity scores across all nine categories of challenging behaviour (Kelly et al. 2006). The OBS-CWS was the index of behaviour change used in three studies (Gerber and Gargaro 2015; Gould et al. 2021; Ponsford et al. 2022). In contrast, two studies (Kelly and Simpson 2011; Kelly et al. 2022) selected the OBS subscales that measured their intervention’s specific behavioural targets. For instance, Kelly and Simpson (2011) selected three subscales (i.e. sexually inappropriate behaviour, verbal aggression, physical aggression) and measured the frequency of challenging behaviour in each category at all severity levels. Data were recorded over 173 days during each support worker shift to monitor changes in frequency of target behaviours.
The Goal Attainment Scale (GAS) (Turner-Stokes 2009) was used in four studies to capture individualised behavioural, activity, or participation goals (Tate et al. 2020; Gerber and Gargaro 2015; Gould et al. 2021, 2022). In each study, the GAS goals were created and reviewed by AHPs in collaboration with participants. Apart from the GAS, only three studies included a published measure of activity and participation: two studies (Lane-Brown and Tate 2010; Tate et al. 2020) used the Nottingham Leisure Questionnaire (NLQ) (Drummond et al. 2001) and one study (Tate et al. 2020) used the Community Integration Measure (CIM) (McColl et al. 2001). One study (Gerber and Gargaro 2015) used the Community Integration Questionnaire (CIQ) (Willer et al. 1993); and one study (Lane-Brown and Tate 2010) used the Mayo-Portland Participation Index (M2PI) (Malec 2004).
Studies reporting five single cases described individualised interventions that targeted operationally defined behaviours and utilised frequency data as the key outcome measure (Treadwell and Page 1996; Yody et al. 2000; Willis and LaVigna 2003; Kelly and Simpson 2011; Feeney and Achilich 2014). All five studies reported clinically significant reductions in overt challenging behaviour. Four of these studies (Carnevale 1996; Yody et al. 2000; Willis and LaVigna 2003; Feeney and Achilich 2014) described interventions that integrated the management of multiple categories of behaviours co-occurring in certain everyday situations.
The results of group studies also provided evidence of the potential effectiveness of behavioural intervention in reducing levels of challenging behaviour, although results were mixed. In evaluating a Natural Setting Behaviour Management (NSBM) program, Carnevale (1996) reported an 82% reduction in targeted challenging behaviours measured by ratings of frequency, duration, and severity of behaviour. This study was followed by an RCT (Carnevale et al. 2006), which also reported a reduction in the frequency of multiple challenging behaviours in the NSBM group. However, these changes were not significantly greater at intervention completion than in the two comparison groups (education only and no intervention). Gerber and Gargaro (2015) embedded behaviour support into a group program offering social opportunities and reported no significant change in the OBS-CWS at the end of the 6-month program.
The second of the two RCTs in this review found a significant reduction in the OBS-CWS score at the completion of 12 months of intervention (Ponsford et al. 2022). However, the matched waitlist TAU group also improved significantly over 12 months. Despite the intervention group receiving considerably more hours of therapy than TAU, the authors noted that one behavioural intervention was not more effective than another. The varied outcomes of three case studies, which were part of the larger cohort (Ponsford et al. 2022) and described by Gould et al. (2021), suggested that the participants’ heterogeneity – including their behavioural profiles – likely influenced group study results.
Tate et al.’s (2020) intervention targeted the specific behaviour of apathy. Their detailed case reports (including unsuccessful outcomes for two of seven participants) highlighted other aspects of heterogeneity. Factors such as the disruptive and detrimental impact of life events (e.g. medical, financial, accommodation, and relationship issues) and the varied capacity of informal supports to implement behaviour support were noted as factors influencing treatment outcomes. Finally, a case report (Kelly and Simpson 2011) and case series (Kelly et al. 2022) described successful interventions that also focused on a single domain of challenging behaviour – in their case, sexually inappropriate behaviour. Although there was also some reduction in co-morbid challenging behaviours, the authors suggested that the interventions had a degree of specificity to the targeted behaviour (Kelly and Simpson 2011; Kelly et al. 2022).
As shown in Table 3, although increased engagement in meaningful activity was noted as a component of most interventions, reporting of activity and participation outcomes was limited in the studies identified. Five studies did not assess or report on activity and participation (Yody et al. 2000; Feeney et al. 2001; Kelly and Simpson 2011; Kelly et al. 2022; Ponsford et al. 2022). Four studies provided brief anecdotal reports, mainly in the context of case descriptions (Carnevale 1996; Treadwell and Page 1996; Willis and LaVigna 2003; Carnevale et al. 2006). Seven studies provided data on activity or participation outcomes for specific functional goals that were a target of the intervention (Davis and Outturn 1994; Lane-Brown and Tate 2010; Feeney and Achilich 2014; Gerber and Gargaro 2015; Tate et al. 2020; Gould et al. 2021, 2022).
The four studies that used the GAS to measure the change in activity and participation highlighted the potential value of AHP intervention targeting goals, skills, or replacement behaviours in specific activity contexts. For example, in Gould et al. (2022), the authors highlighted that a total of 182 goals were generated, of which 135 were related to the World Health Organization International Classification of Functioning, Disability and Health (ICF) categories of activity and participation (WHO 2017). In this study, 84.6% of individualised goals were achieved by the end of the intervention, indicating the potential for meaningful gains many years post-injury. However, whether these gains generalised to other untreated activities or contributed to achieving broader life aspirations from which the specific GAS goals were derived was unclear.
Tate et al.’s (2020) series of SCEDs directly addressed the critical features of apathy, including difficulties generating ideas about what to do. Five of the seven participants in their study benefited from interventions where strategies were directly embedded in everyday activities in naturalistic settings (Tate et al. 2020). The single case of Lane-Brown and Tate (2010) also targeted intervention that focused on two specific functional goals impacted by apathy, and the authors measured the number of minutes per day of participation. There was a significant treatment effect on the two treated activities. Gains did not generalise to a third, unrelated and untreated goal or a broad measure of leisure participation. However, Lane-Brown and Tate (2010) reported that the individual later spontaneously generalised one specific compensatory strategy to an everyday task with similar cognitive demands to a treated task. This specificity of treatment effects and lack of generalisation were also noted by Feeney and Achilich (2014), who utilised a multiple baseline design and reported clinically valuable reductions in three targeted challenging behaviours. These authors argued that gains from behavioural interventions are limited to the contexts of the actual tasks and settings in which they are trained (Feeney and Achilich 2014).
Three studies reported scores on published activity and participation outcome measures (Lane-Brown and Tate 2010; Gerber and Gargaro 2015; Tate et al. 2020). Gerber and Gargaro (2015) reported a significant improvement in CIQ scores, but also noted that the mean total CIQ score remained low. Lane-Brown and Tate (2010) found no treatment effects on the NLQ or the M2PI. Tate et al. (2020) reported the full results of generalisation measures for three of their seven subjects. After the intervention, scores on the NLQ significantly improved for one of the three participants, whereas none showed a significant change on the CIM. Finally, maintaining a community living option or avoiding accommodation breakdown was one broader goal reported to be achieved through the provision of structured behaviour support in the studies by Feeney et al. (2001) and Willis and LaVigna (2003). These studies demonstrated the potential effectiveness of comprehensive, long-term intervention in averting a transition from community living to institutional care.
Nine of the 16 studies formally assessed the maintenance of gains, with reassessments ranging from 1 month (Lane-Brown and Tate 2010) to over 2 years post-intervention (Kelly et al. 2022; Ponsford et al. 2022). Three studies provided no follow-up information (Davis and Outturn 1994; Yody et al. 2000; Gould et al. 2022) and four studies provided brief anecdotal reports (Treadwell and Page 1996; Willis and LaVigna 2003; Feeney and Achilich 2014; Gerber and Gargaro 2015). Most studies utilising the GAS did not report follow-up data (Gerber and Gargaro 2015; Tate et al. 2020; Gould et al. 2022), so it is unclear if gains in activity participation were sustained when the intervention ceased. Scores on the CIM did improve for one of Tate et al.’s (2020) three participants at the 2-month follow-up, and a second participant at the 6-month follow-up.
Several studies provided insights regarding the variable response pattern to intervention and maintenance of gains (Willis and LaVigna 2003; Carnevale et al. 2006; Gerber and Gargaro 2015; Tate et al. 2020; Kelly et al. 2022; Ponsford et al. 2022). Data over three time points were available for 17 of Kelly et al.’s (2022) participants, with four trajectories evident: (1) reduction in challenging behaviour between baseline and intervention closure that was maintained or continued at follow-up, (2) little change between baseline and closure but improvement at follow-up, (3) gains between baseline and closure that were not sustained at follow-up, and (4) no response to intervention.
Similar to Kelly et al.’s (2022) second trajectory of little change between baseline and closure but improvement at follow-up, Carnevale et al. (2006) reported that the benefits of intervention continued; at the 7-month follow-up, a significant difference between the intervention group and one of the comparison groups (education only) was found. Ponsford et al. (2022) reported that treatment gains were maintained at the first follow-up at 20 months (similar to Kelly et al.’s (2022) first trajectory). However, by 36 months, challenging behaviours had increased (although not to baseline levels), similar to Kelly et al.’s (2022) third trajectory. Davis and Outturn (1994) reported that once the intervention supports ceased, the benefits were immediately lost for all but one of six participants (similar to Kelly et al.’s (2022) fourth trajectory). Lane-Brown and Tate (2010) revealed maintenance of a positive treatment effect on goal one but not goal two at follow-up. Five authors indicated that, due to the severity and chronicity of challenging behaviour, ongoing or episodic allied health input was required over the longer term (Feeney et al. 2001; Willis and LaVigna 2003; Gerber and Gargaro 2015; Gould et al. 2021; Kelly et al. 2022).
Discussion
This scoping review was conducted to explore the literature describing the characteristics of participants with ABI and challenging behaviour living in community settings, and to investigate AHP interventions and outcomes across the domains of behaviour, activity, and participation. Only six of the studies identified were published in the past 10 years, and evidence gaps specific to the relationship between behaviour, activity, and participation outcomes after brain injury were identified. Given participation in meaningful activities is viewed as the aim of ABI rehabilitation (Tate et al. 2011; Sabaz et al. 2014), research on behavioural interventions should consider impacts on these domains. This is particularly important given the significant economic and societal costs of the presence of challenging behaviours (Feeney et al. 2001). Thus, the findings from this review offer important considerations to inform further research measuring impact of interventions to inform clinical practice and long-term outcomes following ABI.
The review reported on studies that most often included participants with severe brain injuries, chronically high levels of challenging behaviour, various comorbidities, and significant disability support needs. Study participants were also typically many years post-injury when they received the behavioural intervention. Case reports highlighted that multiple categories of behaviour co-occurred in everyday contexts, creating highly challenging situations for the individual and their formal and informal support networks. Participants’ dynamic and difficult life circumstances were also noted in many of the studies identified, contributing to the complexity of support needs and also impacting the person with ABI’s capacity for participation in research.
Individuals who lack the capacity to learn to self-regulate behaviour rely on others to create the environments or contexts to elicit functional skills and replacement behaviours, whilst engaged in proscribed everyday activities (Ylvisaker et al. 2003, 2007; Feeney 2010). Consistent with this, the BSEC (Kelly and Simpson 2023) identified many intervention elements across the categories of change in the environment, support network, and the individual with ABI. Although most studies combined multiple elements, a key difference was the relative emphasis. Some studies described interventions primarily directed towards skilling individuals to self-manage specific demands. However, it was unclear whether these gains were maintained over time and whether they contributed to reducing overall levels of challenging behaviour. Given the scope of behavioural challenges and potential limits of AHP interventions undertaken directly with the person with ABI, other studies focused on increasing the skills of the support network in implementing behaviour support in home and community settings. In order to maintain the integrity of the BSP and consistency of implementation, one such study emphasised the importance of ongoing training and coaching of all new support workers over the 10-year period of the intervention (Willis and LaVigna 2003). Given the high level of disability support need and the presence of challenging behaviour in many people with severe ABI, these findings highlight the importance of investing in training and coaching the support networks in the person with ABI’s life, including both family and the disability support workforce (Ager and O’May 2001; Topping et al. 2024).
Overall, the scoping review identified that AHP interventions could positively impact chronic behavioural challenges after ABI, including those posing significant risks to the safety of self and others. Only three examples of incorporating an element of environmental restriction or physical restraint were identified, which highlighted the potential benefit of therapeutic approaches to managing complex behaviours in community settings and minimising the use of restrictive practices. The review’s results also revealed variability in response to intervention and maintenance of behavioural gains. However, as Kelly et al. (2022) discussed, intervention is not always successful, and outcomes are vulnerable to erosion once the structured supports cease (Willis and LaVigna 2003; Kelly et al. 2022; Kersey et al. 2022).
In the current review, chronicity of challenging behaviour was evident, and several authors pointed to the need for ongoing AHP intervention. This is consistent with previous research that has raised concerns that people with ABI who experience challenging behaviour may have ongoing or unmet needs (Doig et al. 2001; Simpson et al. 2014) and receive insufficient long-term support (Mahar and Fraser 2011; Knox and Douglas 2018; Andelic et al. 2020). Together, these findings highlight the importance of long-term support for people with challenging behaviour, particularly given the chronically disruptive effect acquiring a brain injury has on the life of the person with the injury as well as their support networks (Sabaz et al. 2014; Hendryckx et al. 2023a).
A gap highlighted by the scoping review was the lack of measurement and reporting of activity and participation outcomes. This evidence gap limited conclusions regarding the functional outcomes of any reduction in challenging behaviour achieved. It has previously been identified that assistance to create more meaningful lives, such as through increased activity and participation, reduces antecedents to challenging behaviours and renders these behaviours less effective in meeting needs (Feeney 2010). Evidencing this, seminal work by Ylvisaker et al. (2007) discussed the concept of ‘social validity’ and noted that ‘behaviour change has little practical significance unless it is generalised … to a variety of natural tasks and settings’ (p. 776). Evidence of a bi-directional relationship between participation and challenging behaviour has been highlighted by Sabaz et al. (2014), who proposed an option for managing challenging behaviour ‘may be to explore avenues for increased participation’ (p. 28). Nevertheless, the current review did not identify studies that explicitly investigated this relationship.
The relationship between behaviour and participation is complex, and findings from this scoping review demonstrate the challenge of rebuilding and maintaining meaningful activity in the context of high support needs and chronically high levels of challenging behaviour. Given this complexity, an important finding of the current review was that behavioural interventions were primarily developed by psychologists or professionals trained in behavioural analysis, with only two examples of multidisciplinary teams. Recent research has found that AHPs may lack training and confidence in this area of practice (Doig et al. 2008; Sabaz 2012; Nott et al. 2020; Carmichael et al. 2021), which may help to explain why therapists were only involved in half of the studies reviewed. In this demanding and complex area of clinical practice, harnessing a broader range of expertise through multidisciplinary collaborations could assist in integrating behavioural interventions with those designed to enhance activity and participation outcomes. However, to achieve such a goal, training, support, and supervision of AHPs to address knowledge gaps and build confidence in working with people with challenging behaviour is important (Beaulieu 2007; Sabaz 2012; Carmichael et al. 2020, 2021).
Limitations and future studies
The scoping review was limited to publications that included people with severe brain injuries and chronic behaviour support needs living in the community. Therefore, the review’s findings have some limitations, including that they may not be generalisable to those with less severe or more recent brain injuries, or they're outside the three Westernised healthcare environments identified in this review. Despite the review including publications from January 1990 onwards, only 16 studies were identified, many were over 10 years old. This may be because it is challenging to deliver structured behaviour support in community settings, and the authors of the studies reviewed also identified many barriers to conducting research. These included heterogeneity of the subjects in terms of injury, behavioural profiles, living situations, support networks, and comorbidities. Future research that considers this complexity, using both recruitment strategies and methodological designs that work to address the existing challenges, will be valuable to add to the currently limited evidence base.
Given the finding that all interventions in the scoping review were individualised, well-designed studies using SCED methodology could provide scientific rigor, clinical relevance, and replicability and enable detailed documentation of intervention (Beaulieu et al. 2023). Such an approach would help address the current lack of guidance for AHPs to assist their clinical decision-making when devising a program of intervention for clients with significant support needs who also display challenging behaviour. Single-case methodology also assists in addressing the finding that group data and global scores mask the individualised responses of participants with ABI and challenging behaviour, who have been acknowledged to be heterogeneous.
Further, despite the barriers that challenging behaviour creates to community integration, the studies identified through this scoping review provide limited insights into the link between behaviour, activity, and participation. Instead, studies tended to focus on interventions at the behavioural level. A future avenue of research would be to explore interventions designed to couple efforts to reduce challenging behaviour with those aimed at increasing participation in valued activities and life roles.
Finally, using the BSEC for narrative synthesis of interventions in this scoping review helped extract the focus and scope of the AHP interventions. However, it also posed some challenges, as the 21 items in the Checklist are broad, and the relative importance of specific elements to the intervention could not always be easily discerned. This was especially the case when people displayed multiple categories of challenging behaviour that required a complex intervention. Nevertheless, employing a comprehensive checklist in future studies to document the range of intervention elements would be clinically helpful and aid replication.
Conclusion
The findings of this review suggest that gains from AHP interventions have the potential to reduce challenging behaviour experienced by people with ABI. However, although gains reported in the literature identified were specific to behaviour, task and setting, there was only a small body of evidence that decreased levels of challenging behaviour facilitated participation, or that increased participation assisted in reducing levels of challenging behaviour. Given the young age at which people often experience severe brain injury, the frequency and chronicity of challenging behaviour, the impoverishing effect of this behaviour on participation, and the resultant high and ongoing disability support needs, the current scoping review has highlighted the requirement for behaviour support interventions to also target and measure activity and participation to positively influence long-term outcomes following ABI.
Acknowledgements
The authors would like to acknowledge Richard Osborn’s assistance in the independent review of titles, abstracts, and full texts; Millie Sloan for editing the final manuscript; and Barney Bould for assisting with ideas to display the data contained in the tables.
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