Introduction

All children learn to communicate with others about what they need and how they feel (Daniels et al., 2012). Children who experience difficulties with verbal communication, such as children with intellectual disability and autistic children, may sometimes use behaviours to communicate their needs or feelings, and as a response to people and their environment (Carr & Durand, 1985; Dew et al., 2017; National Institute of Health and Care Excellence [NICE], 2015; Raising Children’s Network [RCN], 2021). These behaviours are often positive and involve children acting and responding in ways that support their learning, development, wellbeing and safety (RCN, 2024).

If children’s behaviour creates a risk of harm to themselves or others, or affects their ability to participate in society and limits their rights and quality of life, their behaviours may be labelled as ‘concerning’ or ‘challenging’ (The Australian Psychological Society [APS], 2011; McVilly et al., 2002). These behaviours are often referred to as ‘behaviours of concern’, and can include behaviours that cause physical harm, disruptive behaviours and other behaviours that do not fit in with social norms and expectations (Dew et al., 2017; Tevis & Matson, 2022). Some practitioners, researchers, people with disability and their families may use different language such as ‘challenging behaviours’, ‘problem behaviours’ or avoid labelling behaviours altogether.

Some children with disability are more likely to display behaviours of concern than children without disability (Dew et al., 2017; Dunlap & Fox, 2007; Fautha et al., 2017; NICE, 2015; O’Nions et al., 2018). Children with disability have sometimes experienced restrictions to their rights and freedoms in response to behaviours of concern; these kinds of responses are often called a restrictive practices (Cortis et al., 2023). Restrictive practices can cause harm to people with disability, and it is important to understand effective ways to respond to and reduce behaviours of concern without restricting children’s rights and freedoms (Cortis et al., 2023; Leif et al., 2023). Interventions that aim to reduce behaviours of concern should focus on improving children’s wellbeing and quality of life and supporting whole-of-family wellbeing and functioning (APS, 2011; NICE, 2015).

To support children’s behaviours, practitioners may use a number of different interventions and often work alongside parents (Heyvaert et al., 2012; Sandbank et al., 2020). Although some interventions can be delivered by practitioners directly to children, parents play a critically important role in fostering their child’s positive behaviours, development and wellbeing (Bornstein et al., 2022; Dunlap & Fox, 2007). Including and supporting parents in interventions to support children’s behaviours has been shown to improve children’s behaviours, parent mental health and overall child and family wellbeing (Dunlap & Fox, 2007; Ragni et al., 2022; Tarver et al., 2019).

Changing behaviours can take time and interventions to support behaviours should include the people who provide daily care to children (Dunlap & Fox, 2007; Hall et al., 2020). Parent-focused interventions can provide a way for practitioners to support caregivers to reduce the use of restrictive practices (Letif et al., 2023) and learn skills and techniques to support their children’s behaviours and needs (Dunlap & Fox, 2007).

This paper examines the effectiveness of parent-focused interventions designed to improve behaviours of concern for children with intellectual disability and autistic children. It describes the characteristics of parent-focused interventions effective at improving children’s behaviours of concern. The paper closes with some implications for practice with families with a child with disability. This resource discusses general research evidence on the effectiveness of interventions and does not discuss specific NDIS-funded services or guidelines for practice.

 Terminology and definitions used in this review

There are ongoing debates around language and definitions in this area and it is important to continually consult with communities directly impacted by the use of these terms. A brief explanation is provided below to aid understanding of when, and in what contexts, these terms may be appropriate to use. A longer list of the terms and definitions used in this review is provided in the glossary.

Behaviours of concern

The term ‘behaviours of concern’ describes behaviours that (APS, 2011; McVilly et al., 2002):

• can pose a risk to the health and safety of a child or those around them
• act as a barrier(s) to their participation in society
• cause social isolation or restrictions to their rights and quality of life.

‘Behaviours of concern’ is not a clinical diagnosis; it is an administrative term sometimes used in practice and assessments to identify groups of behaviours that can affect a person’s safety, wellbeing, rights and quality of life. It can also indicate to a practitioner that a child and their family may need additional or specialist support (Chan et al., 2012). Recently, some researchers and practitioners have suggested that terms such as ‘environments of concern’ can help frame external environments and situations as the cause of concerning behaviours, rather than focusing solely on individuals displaying the behaviours (Jorgensen et al., 2023 p. 95).

People with disability, autistic people and their families have emphasised that the goal of supports for behaviours of concern should be to address behaviours that can negatively impact children’s wellbeing and quality of life, rather than making children with disability or neurodivergent children appear ‘normalised’ (Child Mind Institute, 2023; RCN, 2022). Non-harmful repetitive behaviours displayed by some children with disability are not considered behaviours of concern or in need of correction in this review. These can include, for example, repetitive, self-stimulatory body movements (sometimes referred to as ‘stimming’) such as hand flapping, rocking the body or rubbing a particular object (APA, 2020; Kapp et al., 2019).

The linked practice guide Understanding Behaviours of Concern for Children with Disability includes a more detailed discussion of the concept of ‘behaviours of concern’ for children with disability.

Person-first and identity-first language

Person-first language; for example, ‘people with disability’, places a person’s identity before their disability and is commonly used in Australia. It focuses on a person’s right to an identity beyond their disability or impairment (Victoria State Government, 2022). However, some people feel that person-first language provides an individualised understanding of disability (Victoria State Government, 2022). Many autistic and neurodiverse people have voiced strong preferences for identity-first language; for example, ‘autistic people’ or ‘disabled people’ because they feel that autism is a core part of their identity (AMAZE, 2018).

This paper adopts a dual approach that uses person-first language to respect the preferences of many people with disability, particularly people with intellectual disability (Victoria State Government, 2022) but uses identity-first language whenever we refer to autistic and neurodiverse people. However, each individual has the right to decide how they are described and these terms are not used by all people with intellectual disability or all autistic people.

Parent-focused behaviour support interventions

Parents are included in behaviour support interventions in different ways and to varying degrees. The language used to describe these interventions is often unclear; terms like ‘parenting intervention’ and ‘parent training’ are sometimes used interchangeably or inconsistently and can refer to a variety of interventions with different types and levels of support (Bearss, Burrell et al., 2015). This review uses the term ‘parent-focused interventions’ to describe any intervention that includes parents as a core component and is either delivered to parents, or by parents, to provide support with children’s behaviours of concern.

Methodology of this review

We conducted a rapid review (Garrity et al., 2021) of the research evidence on the effectiveness of interventions designed for parents of children with intellectual disability and parents of autistic children to decrease the frequency or severity of behaviours of concern. The review was guided by the research question, ‘What parent-focused interventions are effective for improving behaviours of concern displayed by children with intellectual disability or autistic children?’

Effectiveness was defined as an improvement in children’s behaviours of concern, which was shown by a statistically significant reduction in the frequency or severity of behaviours of concern, compared to a comparison group (Akobeng, 2005).

Relevant randomised controlled trials (RCTs) from recent research literature (published from 2012 to 2022) were identified by searching the Australian Institute of Family Studies (AIFS) Catalogue Plus database and Google Scholar. We also conducted stakeholder consultations with researchers and disability service providers to inform the design and scope of the review.

Further details on the methodology, including search strategy and data analysis, is provided in Appendix C.

Understanding evidence from randomised controlled trials

This review focused on evidence from randomised controlled trials (RCTs) as they are often considered the most rigorous method of conducting primary research (Akobeng, 2005). For more information on understanding evidence in RCTs and the challenges and limitations of RCTs, see Appendix A

RCTs were examined to understand whether children’s behaviours improved (i.e. behaviours of concern reduced in frequency or severity) after an intervention was delivered, compared to a group of children that did not receive the intervention. ‘Effect sizes’ reported in RCTs were used to understand how much children’s behaviours improved. In this review, effect sizes were categorised into small, medium and large effects:

• A small effect size means that the children who received the intervention experienced an improvement in behaviours compared to the children who did not receive the intervention but the difference was small and may not be obvious in clinical or real-world settings (Sullivan & Feinn, 2012).
• A medium effect size means that children who received the intervention experienced a moderate improvement in behaviours compared to children who did not receive the intervention.
• A large effect size means that children who received the intervention experienced a much greater improvement in behaviours compared to children who did not receive the intervention, and this difference in behaviour outcomes is very easy to see (Sullivan & Feinn, 2012).

When effect sizes are larger, practitioners and policy makers can usually have greater confidence in basing their decision making or practice on the findings.

What is the nature of the evidence on parent-focused interventions?

Existing reviews of research evidence report that a range of non-pharmacological behaviour support interventions can improve the behaviours of children with disability (Gerow, et al., 2018 McIntyre, et al., 2013; Petrenko et al., 2013; Postorino et al., 2017; Ragni et al., 2022; Ruane & Carr, 2019; Skotarczak & Lee, 2015; Tellegen & Sanders, 2013; Whitehouse et al., 2020). However, they are often limited to one specific program, intervention type, or population, or they include varying levels of information about how to involve parents and families in interventions. Researchers have also observed that a significant amount of this evidence is of low quality (i.e. mostly non-experimental studies without control or comparison groups, with high risk of bias and small sample sizes; Ragni et al., 2022; Sandbank et al., 2020).

This section describes the evidence from RCTs on the effectiveness of parent-focused supports for children with disability who display behaviours of concern.

Summary of included studies

A total of 19 RCTs were included in this review.¹ The studies involved participants based in the USA (8 studies), Canada (4 studies), Australia (2 studies) and other countries with similar economic and/or political environments (Table 5).

Overall, the RCTs included a total of 1,525 families, with sample populations ranging from 23 to 209 participants per study. Most studies included one parent and one child per ‘family’. Nearly all parents included in the studies were female (93%). Most families identified as Caucasian or white, were dual-parent households and parents had attended some college or university.

All studies measured the behaviours of one child in each family (n = 1,525 children). The mean age of children at the start of the study ranged from 1.56 to 12.17 years. Most children were male (74%) and diagnosed with autism spectrum disorder (ASD; 59%). Children with intellectual disability made up almost one-quarter (24%) of study participants. Eight studies included participants with different disability diagnoses (mixed-disability groups).

A wide range of measurement tools were used across studies to measure children’s behaviours, and most studies focused on using parent-report measures. ²There was also large variation in the terminology used to describe children’s ‘behaviours of concern’ across studies, including ‘problem behaviour’ and ‘challenging behaviour’. Many studies did not provide a formal definition of the term used.

The theory and approaches that underpinned interventions were rarely described in detail. However, most studies appeared to focus on interventions underpinned by behavioural theory and principles, including social learning theory, understandings of operant conditioning and applied behaviour analysis. Some of these interventions were also based on the principles of positive behaviour support (PBS). ³ Definitions of these approaches are provided in the Glossary.

Types of parent-focused interventions

To understand and categorise the types of parent-focused interventions that were included in this review we drew on a framework developed by Bearss, Burrell and colleagues (2015). This framework outlines 2 groups of intervention types: parent support interventions and parent-mediated interventions:

• Parent support interventions are delivered by practitioners to parents and aim to support parent wellbeing or build parent knowledge and support children indirectly.
• Parent-mediated interventions involve parents being trained or coached to deliver an intervention to their child or build parent capabilities and skills with the primary aim of supporting the child.

Parent support and parent-mediated interventions were classified into further subcategories to reduce potential confusion around terms such as ‘parent training’ and support the understanding of interventions, how to compare them and why they may or may not be effective (Whitehouse et al., 2020) (see Table 1). For details on the type of parent-focused intervention included in each study see Table 6.

Table 1: Categories of parent-focused interventions⁴

¹Bearss, Johnson et al., 2015 and Iadorola et al., 2018 reported on the results of the same study and the results were combined for analysis.

²The NDIS provide a comprehensive list of measurement tools used in supporting people with disability, including supporting behaviours of concern (NDIS, 2019). It is important to consider if tools are appropriate for children with disability who may be non-verbal or have communication difficulties (APS, 2011).

³Some individual interventions were called ‘Positive Behaviour Support (PBS)’; for example, ‘mindfulness based PBS’ (Singh et al., 2021). However, PBS does not refer to a single intervention but a broader approach to behaviour support that is based in a set of values and principles that guide the ways supports are offered. PBS can include a range of complementary assessments and individual interventions to support behaviours and improve a person’s quality of life (Gore et al., 2013; see Glossary).

⁴Based on Bearss, Burrell et al., 2015; Marino et al., 2021; McCrossin et al., 2023, and Snodgrass et al., 2017.

⁵Parents and children can benefit from all parent-focused interventions but the ‘primary beneficiary’ describes who the intervention is mainly designed to support.

What does the evidence say about the effectiveness of parent-focused interventions?

This section describes the research evidence on the effectiveness of interventions, the similarities and differences between the 2 categories of parent-focused interventions and the characteristics of effective interventions.

As each child displays unique behaviours, studies often measured a diverse range of behaviours to understand whether interventions were effective at improving children’s behaviours of concern. In this resource, interventions are described as effective if there was a reduction in the frequency and/or severity of the behaviours that were measured in the study after the intervention was delivered (see the Methodology section of this paper for a more in-depth discussion of understanding the evidence for effectiveness).

Parent support interventions

Parent support interventions include parent education support and parent psychosocial support. Studies indicate that education and psychosocial support for parents are most likely to be effective for improving children’s behaviours when they are combined with other effective interventions, such as parent skills training.

Parent education support

Research evidence indicates that providing education to parents may support small reductions in children’s behaviours of concern for some families (Bearss, Johnson et al., 2015; Charman et al., 2021). However, parent education alone does not lead to significant changes in children’s behaviours and parent-mediated interventions may be better suited to support families (Bearss, Johnson et al., 2015; Magaña et al., 2020; Suzuki et al., 2014).

Parent education was sometimes included as part of effective parent-mediated interventions (e.g. delivering education to parents at the start of a skills training intervention; Charman et al., 2021; Kostulski et al., 2021; Roux et al., 2013; Ruane et al., 2019). This suggests that while education for parents may not be the most effective way to support children’s behaviours, it can form part of other effective interventions.

Parent psychosocial support

We found limited research on standalone psychosocial support for parents in this review. Some studies suggest that when psychosocial supports are provided alongside, or as part of, other parent-mediated interventions (e.g. providing mindfulness training alongside other training in behaviour support) they can contribute to significant improvements in children’s behaviours of concern (Durand et al., 2013; Singh et al., 2021). However, it is not possible to draw strong conclusions on whether psychosocial support for parents can improve children’s behaviours.

Parent-mediated interventions

Parent-mediated interventions include parent skills training and parenting coaching. Overall, both types of interventions were effective at improving children’s behaviours of concern. Parent skills-training interventions were most frequently found to be effective but some parent coaching interventions reported larger improvements in children’s behaviours.

Parent skills training

Research findings suggest that providing parents with training in behaviour support skills is an effective way to improve children’s behaviours of concern. In the studies included in this review, most parent skills training interventions were found to be effective at improving children’s behaviours of concern with medium (n = 4) or small (n = 3) effect sizes (Table 2).

For more information about the interventions, and the individual study characteristics, see Table 5 and Table 6. Practitioners and service providers may need to consider licencing requirements (e.g. training and payment) to access some of the interventions.

Table 2: Findings from parent skills training interventions

Notes: a Interventions are considered effective if the study reported that the difference in child behaviour outcomes between the intervention and comparison group was statistically significant after the intervention was delivered. 
b Effect sizes show the size of the difference in outcomes between the intervention and comparison group after the intervention was delivered. 
c Authors did not recommend the intervention as a standalone treatment due to high attrition (lost to follow up) and social validity concerns (ability to meet the needs and goals of recipients and families). 
N/A = not applicable.

Parent coaching

Research findings suggest that coaching parents in behaviour support skills and interventions can effectively improve children’s behaviours of concern.

The majority of parent coaching interventions included in this review were effective at improving children’s behaviours of concern with a variety of effect sizes, including small to medium (n = 1), medium (n = 2) and large (n = 2; Table 3).

Table 3: Findings from parent coaching interventions

Notes: a Interventions are considered effective in this review if the study reports that the difference in child behaviour outcomes between the intervention and comparison group was statistically significant after the intervention was delivered. 
b Effect sizes show the size of the difference in outcomes between the intervention and comparison group after the intervention was delivered.
c This study did not report effect sizes.
N/A = not applicable.

The overall effectiveness of parent-mediated interventions

Overall, parent-mediated interventions were often effective at improving children’s behaviours of concern. Most interventions that were categorised as ‘not effective’ (n = 3) showed some positive effect on children’s behaviours but improvements in children’s behaviours were not statistically significant when compared to children who received a different intervention (Argumedes et al., 2021; Charman et al., 2021; Salisbury et al., 2022; see Appendix D). In other words, these studies compared 2 different interventions and both interventions led to similar improvements in children’s behaviour.

Studies that assessed improvements in children’s behaviours in the longer term (i.e. more than 3 months after the intervention was delivered) found that effectiveness was largely maintained over time. However, not all studies measured long-term outcomes and more research is needed to fully understand the effects of parent-mediated interventions in the long term.

The evidence in this review suggests parent-mediated interventions can effectively improve children’s behaviours of concern. Parent skills training interventions were frequently reported to be effective. Parent coaching interventions were also effective and some reported larger effect sizes. Detailed descriptions of individual study characteristics, including interventions, formats, duration and delivery are provided in Appendix D, Table 5 and Table 6.

Characteristics of effective interventions

The research evidence that we reviewed included varying levels of information about what the interventions comprised and how they were delivered. ⁶ Based on the information available, it was not possible to understand which specific elements of the interventions contributed to their level of effectiveness. However, a functional approach to understanding behaviours was commonly used as a core component in both parent skills training and parent coaching interventions. A functional approach is a core part of the theories and approaches that often underpin behavioural interventions.

A functional approach to behaviour:

• views all behaviour as a form of communication
• aims to identify the functions behind a child’s behaviours
• focuses on finding ways to alter a child’s environment so the behaviour is no longer needed or teaching alternative behaviours to fill that function (Gore et al., 2013; Hall et al., 2020; Hanley et al., 2003).

This approach often uses the process of a ‘functional assessment’ to understand behaviours. This includes detailed analysis of each individual behaviour to help identify the most appropriate and effective supports (Gore et al., 2013; Hanley, 2012). (See the Glossary and this practice guide for more information.)

Parent coaching and parent skills training delivered a functional approach to behaviours in slightly different ways, largely due to differences in the intensity of interventions. Parent skills training often taught groups of parents to understand and apply the principles of a functional approach and assessment, whereas parent coaching usually included a tailored functional assessment of each individual child’s behaviours with the support of trained practitioners.

While a functional approach was commonly used (as most interventions appeared to be based on behavioural theories), other approaches to understanding and supporting behaviours may also effectively support children’s behaviours. One effective intervention used a developmental or attachment-based approach focused on improving parent–child interactions and relationships (Ginn et al., 2017). Other effective interventions used cognitive-behavioural approaches alongside behavioural interventions to help parents support their mental wellbeing and identify current thinking patterns (Durand et al., 2012; Singh et al., 2021).

In summary, understanding the functions of a child’s behaviours of concern was a core part of most parent-mediated behavioural interventions in this review. Parent coaching interventions taught parents to do this in more detail with more guidance from practitioners.

Parent fidelity in parent-mediated interventions

Parent fidelity is the degree to which parents can deliver an intervention accurately, as it is intended to be delivered (Mowbray et al., 2003). In interventions that rely on parents’ understanding of content to deliver behavioural supports to their child, parent fidelity can potentially impact the effectiveness of the intervention. For example, if parents do not accurately deliver the intervention, the intervention may be evaluated as being less effective or ineffective.

Only 2 studies measured parent fidelity against the effectiveness of a parent-mediated intervention. One study (Hall et al., 2020) found that when parents more accurately delivered the intervention, the improvements in children’s behaviours were greater. However, another study (Argumedes et al., 2021) found that even when parents delivered the intervention with lower accuracy, some improvements were still observed in children’s behaviours (Argumedes et al., 2021). More research is needed to understand the impact of parent fidelity on the effectiveness of parent-mediated interventions.

⁶Intervention procedure manuals may be available online or be purchased from libraries and service providers but they were not available for all interventions described in this review. Only information provided in peer-reviewed published papers of the RCT studies were summarised.

Evidence-informed implications for practice

Parents have a large influence on children’s development and wellbeing, and it is important to include parents and caregivers in interventions that support children’s behaviours (Dunlap & Fox, 2007; Ragni et al., 2022; Tarver et al., 2019). Overall, the evidence included in this review suggests that parents can be trained or coached to deliver effective behaviour supports to their child with intellectual disability or autistic child who displays behaviours of concern, specifically:

• Parent-mediated interventions (parent skills training and parent coaching) can be effective at improving behaviours of concern for children with disability.
• Effective parent-mediated behavioural interventions used a functional approach to understanding behaviours. These interventions encouraged parents to understand behaviour as a form of communication and to identify the environmental influences and functions of children’s behaviours of concern.

When deciding which supports or interventions to provide to families, it may be useful for practitioners to consider the differences between education, skills training and coaching for parents:

• Parent skills training interventions can support improvements in behaviours of concern for children with disability. These interventions are varied, and it may be useful to recommend the format that is best suited to each family, considering the availability of resources. Certain types of skills training (e.g. group or online interventions) may be more appropriate for families who have less time and would like more general support.
• Parent coaching interventions can lead to larger improvements in behaviours of concern for children with disability than parent skills training. Parent coaching interventions tend to be more individualised and intensive and may be better suited to families that want more detailed assessments of children’s needs and more one-to-one time with practitioners (e.g. for children exhibiting higher levels of behaviours of concern).
• Preliminary evidence on parent education interventions for families with a child with disability indicates that while parent education alone does not effectively improve children’s behaviours, it can form part of effective parent-mediated interventions.

When providing parent-focused interventions to support the behaviours of children with disability, it may also be helpful to consider:

• how accurately parents implement interventions with their child/ren, as it is not clear how parent fidelity impacts the effectiveness of interventions. More research is needed to understand this.
• the characteristics of the children that interventions aim to support. Most children in the studies reviewed for this paper were male with a diagnosis of autism or developmental delay. These findings may not necessarily apply to female children and/or children with other disabilities.
• other interventions and approaches that can also support children with disability and their behaviours, such as interventions that focus on children’s development, attachment and mental health.

Research gaps and limitations

This review identified several limitations and gaps in the existing evidence base that should be considered alongside the findings and implications. (The limitations of the rapid review methodology are detailed in Appendix C).

• More research is needed to understand the effectiveness of parent-focused interventions for children with disability for male and gender diverse caregivers as nearly all participants were mothers or female caregivers.
• Further research is needed with more diverse populations to understand the effectiveness of interventions for different population groups (e.g. First Nations families, families from culturally and linguistically diverse backgrounds, single parent and LGBTQIA+ parent households).
• The 2 Australian-based studies included in this review did not include any Aboriginal or Torres Strait Islander participants. More research is needed to understand, design and evaluate interventions that are culturally appropriate and safe for Aboriginal and/or Torres Strait Islander families, and that reflect and respect their world view including the way communities understand disability (First Peoples Disability Network [FPDN], 2022).
• The research evidence we reviewed was unclear about how the delivery of behavioural interventions or reductions in behaviours of concern affected children’s wellbeing. This may be influenced by our study selection criteria as RCTs are often designed to explore the effects of interventions on one outcome (i.e. children’s behaviours) and don’t include detailed information on the experiences of families and children. Future evidence reviews may want to specifically explore the impact of interventions on child wellbeing and overall quality of life from the perspectives of children with disability.
• Future research may want to examine practitioner skills and capabilities needed to deliver parent-focused interventions as this is likely to impact the availability and effectiveness of interventions.

Conclusion

This paper reviewed evidence on interventions that can be delivered by, or to, parents to improve behaviours of concern for children with intellectual disability and autistic children. The findings suggest that parent-mediated training and coaching interventions can be effective for supporting parents and their children with disability to improve behaviours of concern. Parent education interventions were generally not effective for improving children’s behaviours of concern; however, providing education to parents may form part of effective parent-mediated interventions or support other outcomes not included in this review (e.g. parent confidence).

There are various types of effective parent-mediated interventions that can be delivered in different ways and use different procedures. However, a core component of effective interventions included identifying the functions of children’s behaviours and training parents to modify environments or teach alternative behaviours.

References

*Indicates study included in the rapid review

Australian Council of Learned Academics (ACOLA). (2022). Ensuring occupations are responsive to people with disability. Acton, ACT: ACOLA. Retrieved from www.disabilitygateway.gov.au/sites/default/files/documents/2022-10/2976-acola-disability.pdf

Akobeng, A. K. (2005). Understanding randomised controlled trials. Archives of Disease in Childhood, 90, 840–844.

AMAZE. (2018). Writing and talking about autism: Terminology and identity-first language. Retrieved from www.amaze.org.au/2018/04/writing-and-talking-about-autism-preferred-terminology

American Psychiatric Association (APA). (2013) Diagnostic and statistical manual of mental disorders: Fifth Edition (DSM-V). Arlington, VA: APA.

America Psychiatric Association (APA). (2020, December 7). Understanding stimming: Repetitive behaviors with a purpose. Arlington, VA: APA. Retrieved from www.psychiatry.org/news-room/apa-blogs/understand-stimming-repetitive-behaviors-purpose

Australian Institute of Health and Welfare (AIHW). (2022). Australia’s children. Canberra: AIHW. Retrieved from www.aihw.gov.au/reports/children-youth/australias-children

The Australian Psychological Society. (APS). (2011). Evidence-based guidelines to reduce the need for restrictive practices in the disability sector. Melbourne: APS. Retrieved from psychology.org.au/getmedia/c986ad95-d312-4b2c-89da-3157b215f118/restrictive-practices-guidelines-for-psychologists.pdf

*Argumedes, M., Lanovaz, M., Larivée, S., & Giannakakos, A. (2021). Using the Prevent-Teach-Reinforce model to reduce challenging behaviors in children with autism spectrum disorder in home settings: A feasibility study. Research in Autism Spectrum Disorders, 86. doi.org/10.1016/j.rasd.2021.101804

*Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M. et al. (2015a). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: A randomized clinical trial. JAMA, 313(15), 1524–1533. 
doi.org/10.1001/jama.2015.3150

Bearss, K., Burrell, T. L., Stewart, L., & Scahill, L. (2015b). Parent training in autism spectrum disorder: What’s in a name? Clinical Child and Family Psychology Review, 18(2), 170–182.

Bornstein, M. H., Kotler, J. A., & Lansford, J. E. (2022). The Future of Parenting Programs: An Introduction. Parenting, 22(3), 189–200. doi.org/10.1080/15295192.2022.2086808

Campbell, M., McKenzie, J. E., Sowden, A., Katikireddi, S. V., Brennan, S. E., Ellis, S. et al. (2020). Synthesis without meta-analysis (SWiM) in systematic reviews: Reporting guidelines. BMJ, 368, l6890. doi:10.1136/bmj.l6890

Carr, E., & Durand, M. (1985). Reducing behaviour problems through Functional Communication Training. Journal of Applied Behaviour Analysis, 18(2), 111–126.

Chan, J., Arnold, S., Webber, L., Riches, V., & Parmenter, T. (2012). Is it time to drop the term ‘challenging behaviour’? Learning Disability Practice, 15, 36–38. doi.org/10.7748/ldp2012.06.15.5.36.c9131.

*Charman, T., Palmer, M., Stringer, D., Hallett, V., Mueller, J., Romeo, R. et al. (2021). A novel group parenting intervention for emotional and behavioral difficulties in young autistic children: Autism Spectrum Treatment and Resilience (ASTAR). A randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 60(11), 1404–1418. 
doi.org/10.1016/j.jaac.2021.03.024

Child Mind Institute (CMI). (2023). The controversy around ABA. CMI. Retrieved from childmind.org/article/controversy-around-applied-behavior-analysis

Commonwealth of Australia. (2021). Australia’s Disability Strategy 2021–2031. Canberra: Commonwealth of Australia, Department of Social Services.

Commonwealth of Australia. (2023). Working together to deliver the NDIS: Independent review into the National Disability Insurance Scheme. Final report. Canberra: Commonwealth of Australia. Retrieved from www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis

Cortis, N., Smyth, C., & Katz, I. (2023). Reducing restrictive practices: A review of evidence-based alternatives. Report for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Sydney: UNSW Social Policy Research Centre.

Daniels, E., Mandleco, B., & Luthy, K. E. (2012), Assessment, management, and prevention of childhood temper tantrums. Journal of the American Academy of Nurse Practitioners, 24, 569–573. doi.org/10.1111/j.1745-7599.2012.00755.x

Department of Health and Human Services (DHHS). (2018). Positive practice framework: A guide for behaviour support practitioners. Melbourne: Department of Health and Human Services.

Dew, A., Collings, S., Dowse, L., Meltzer, A., & Smith, L. (2019). ‘I don’t feel like I’m in this on my own’: Peer support for mothers of children with intellectual disability and challenging behaviour. Journal of Intellectual Disabilities, 23(3), 344–358. 
doi.org/10.1177/1744629519843012

Dew, A., Jones, A., Horvat, K., Cumming, T., Dillon Savage, I., & Dowse, L. (2017). Understanding behaviour support practice: Young children (0–8 years) with developmental delay and disability. Sydney: UNSW.

*Durand, V. M., Hieneman, M., Clarke, S., Wang, M., & Rinaldi, M. L. (2013). Positive family intervention for severe challenging behavior I: A multisite randomized clinical trial. Journal of Positive Behavior Interventions, 15(3), 133–143. 
doi.org/10.1177/1098300712458324

Dunlap, G., & Fox, L. (2007). Parent–Professional Partnerships: A valuable context for addressing challenging behaviours. International Journal of Disability, Development and Education, 54(3), 273–285. doi.org/10.1080/10349120701488723

Fauth, R. C., Platt, L., & Parsons, S. (2017). The development of behaviour problems among disabled and non-disabled children in England. Journal of Applied Developmental Psychology, 52, 46–58.

First Peoples Disability Network (FPDN). (2022). An approach to research and policy from the perspective of Aboriginal and Torres Strait Islander people with disability. Canberra: FPDN. Retrieved from fpdn.org.au/research-and-policy-national-and-international

Garritty, C., Gartlehner, G., Nussbaumer-Streit, B., King, V. J., Hamel, C., Kamel, C. et al. (2021). Cochrane Rapid Reviews Methods Group offers evidence-informed guidance to conduct rapid reviews. Journal of Clinical Epidemiology, 130, 13–22. 
doi.org/10.1016/j.jclinepi.2020.10.007

Gerow, S., Hagan-Burke, S., Rispoli, M., Gregori, E., Mason, R., & Ninci, J. (2018). A Systematic Review of Parent-Implemented Functional Communication Training for Children With ASD. Behavior modification, 42(3), 335–363. 
doi.org/10.1177/0145445517740872

*Ginn, N. C., Clionsky, L. N., Eyberg, S. M., Warner-Metzger, C., & Abner, J. P. (2017). Child-directed interaction training for young children with autism spectrum disorders: Parent and child outcomes. Journal of Clinical Child and Adolescent Psychology, 46(1), 101–109. doi.org/10.1080/15374416.2015.1015135

Gore, N., McGill, P., Toogood, S., Allen, D., Hughes, J. C., Baker, P. et al. (2013). Definition and scope for positive behaviour support. International Journal of Positive Behavioural Support, 3.

*Grenier-Martin, J., Rivard, M., Patel, S., Lanovaz, M. J., & Lefebvre, C. (2022). Randomized controlled trial on an online training to support caregivers of young children with intellectual and developmental disability managing problem behaviors at home. Journal of Child and Family Studies, 31(12), 3485–3497.

*Hall, S. S., Monlux, K. D., Rodriguez, A. B. et al. (2020). Telehealth-enabled behavioral treatment for problem behaviours in boys with fragile X syndrome: A randomized controlled trial. Journal of Neurodevelopmental Disorders, 12, 31. 
doi.org/10.1186/s11689-020-09331-4

Hanley, G., Brian, I., & McCord, B. (2003). Functional analysis of problem behavior: A review. Journal of Applied Behaviour Analysis, 36, 147–185. doi.org/10.1901/jaba.2003.36-147

Hanley, G. P. (2012). Functional assessment of problem behaviour: Dispelling myths, overcoming implementation obstacles, and developing new lore. Behaviour Analysis in Practice, 5, 54–72.

Heyvaert, M., Maes, B., Van den Noortgate, W., Kuppens, S., & Onghena, P. (2012). A multilevel meta-analysis of single-case and small-n research on interventions for reducing challenging behaviour in persons with intellectual disabilities. Research in Developmental Disabilities, 33(2), 766–780. doi.org/10.1016/j.ridd.2011.10.010

*Iadarola, S., Levato, L., Harrison, B., Smith, T., Lecavalier, L., Johnson, C. et al. (2018). Teaching parents behavioral strategies for autism spectrum disorder (ASD): Effects on stress, strain, and competence. Journal of Autism and Developmental Disorders, 48(4), 1031–1040. doi.org/10.1007/s10803-017-3339-2

Johnson, S., (2021). Evaluation design. Melbourne: Australian Institute of Family Studies. Retrieved from aifs.gov.au/resources/practice-guides/evaluation-design

Jorgensen, M., Nankervis K., & Chan., J (2023) ‘Environments of concern’: Reframing challenging behaviour within a human rights approach. International Journal of Developmental Disabilities, 69(1), 95–100. doi.org/10.1080/20473869.2022.2118513

Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E. et al. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism: The International Journal of Research and Practice, 23(7), 1782–1792. doi.org/10.1177/1362361319829628

*Kleefman, M., Jansen, D. E., Stewart, R. E., & Reijneveld, S. A. (2014). The effectiveness of Stepping Stones Triple P parenting support in parents of children with borderline to mild intellectual disability and psychosocial problems: S randomized controlled trial. BMC Medicine, 12, 191. doi.org/10.1186/s12916-014-0191-5

*Kostulski, M., Breuer, D., & Döpfner, M. (2021). Does parent management training reduce behavioural and emotional problems in children with intellectual disability? A randomised controlled trial. Research in Developmental Disabilities, 114, 103958.

Leif, E., Fox, R., Subban, P., & Sharma, U. (2023) ‘Stakeholders are almost always resistant’: Australian behaviour support practitioners’ perceptions of the barriers and enablers to reducing restrictive practices. International Journal of Developmental Disabilities, 69(1), 66–82. doi.org/10.1080/20473869.2022.2116908

*Lindgren, S., Wacker, D., Schieltz, K., Suess, A., Pelzel, K., Kopelman, T. et al. (2020). A randomized controlled trial of functional communication training via telehealth for young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(12), 4449–4462. doi.org/10.1007/s10803-020-04451-1

MacLehose, R. R., Reeves, B. C., Harvey, I. M., Sheldon, T. A., Russell, I. T., & Black, A. M. (2000). A systematic review of comparisons of effect sizes derived from randomised and non-randomised studies. Health Technology Assessment, 4(34), 1–154.

Marino, F., Failla, C., Chilà, P., Minutoli, R., Puglisi, A., Arnao, A. A., et al. (2021). The effect of acceptance and commitment therapy for improving psychological well-being in parents of individuals with autism spectrum disorders: A randomized controlled trial. Brain Sciences, 11(7), 880.

*Magaña, S., Lopez, K., Salkas, K., Iland, E., Morales, M. A., Garcia Torres, M. et al. (2020). A randomized waitlist-control group study of a culturally tailored parent education intervention for Latino parents of children with ASD. Journal of Autism and Developmental Disorders, 50(1), 250–262. doi.org/10.1007/s10803-019-04252-1

McCrossin, J., Lach, L., & McGrath, P. (2023). Content analysis of parent training programs for children with neurodisabilities and mental health or behavioural problems: a scoping review. Disability and Rehabilitation, 45(1), 154–169.

McIntyre, L. (2013). Parent training interventions to reduce challenging behaviour in children with intellectual and developmental disabilities. International Review of Research in Developmental Disabilities, 44, 245–279. 
doi.org/10.1016/B978-0-12-401662-0.00008-7

McVilly, K., Bristow, S., Foreman, P., Goddard, L., & Australian Society for the Study of Intellectual Disability. (2002). Positive behaviour support for people with intellectual disability: Evidence-based practice, promoting quality of life. Putney, NSW: Australian Society for the Study of Intellectual Disability.

Meltzer, A., Dowse, L., Smith, L., & Dew, A. (2021). A framework for interconnected benefits of peer support for family members of people with disability. Australian Journal of Social Issues, 56, 579– 595. doi.org/10.1002/ajs4.130

Mowbray, C. T., Holter, M. C., Teague, G. B., & Bybee, D. (2003). Fidelity criteria: Development, measurement, and validation. American Journal of Evaluation, 24(3), 315–340. doi.org/10.1177/109821400302400303

National Institute of Health and Care Excellence (NICE). (2015). Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges. NICE Guideline [NG11]. Retrieved from www.nice.org.uk/guidance/ng11

NDIS Quality and Safeguards Commission (NDIS). (2019). Compendium of resources for positive behaviour support. Penrith, Australia: NDIS Quality and Safeguards Commission. Retrieved from www.ndiscommission.gov.au/providers/understanding-behaviour-support-and-restrictive-practices-providers#paragraph-id-5726

NDIS Quality and Safeguards Commission (NDIS). (2020). Regulated restrictive practices guide. Penrith, Australia: NDIS Quality and Safeguards Commission.

NDIS Quality and Safeguards Commission (NDIS). (2021). Regulated restrictive practices guide with children and young people with disability. Penrith, Australia: NDIS Quality and Safeguards Commission.

O’Connor, T. G., Matias, C., Futh, A., Tantam, G., & Scott, S. (2013). Social learning theory parenting intervention promotes attachment-based caregiving in young children: Randomized clinical trial. Journal of Clinical Child and Adolescent Psychology, 42(3), 358–370. doi.org/10.1080/15374416.2012.723262

Oliver, M. (1983). Social work with disabled people. Basingstoke: Macmillan.

O’Nions, E., Happé, F., Evers, K., Boonen, H., & Noens, I. (2018). How do parents manage irritability, challenging behaviour, non-compliance and anxiety in children with autism spectrum disorders? A meta-synthesis. Journal of Autism and Developmental Disorders, 48, 1272–1286. doi.org/10.1007/s10803-017-3361-4

Petrenko, C. L. (2013). A review of intervention programs to prevent and treat behavioral problems in young children with developmental disabilities. Journal of Developmental and Physical Disabilities, 25(6), 10.1007/s10882-013-9336-2. 
doi.org/10.1007/s10882-013-9336-2

Postorino, V., Sharp, W. G., McCracken, C. E., Bearss, K., Burrell, T. L., Evans, A. N., & Scahill, L. (2017). A systematic review and meta-analysis of parent training for disruptive behaviour in children with autism spectrum disorder. Clinical Child and Family Psychology Review, 20(4), 391–402. doi.org/10.1007/s10567-017-0237-2

Raising Children’s Network (RCN). (2021). Communication: Autistic children. Retrieved from raisingchildren.net.au/autism/communicating-relationships/communicating/communication-asd

Raising Children’s Network (RCN). (2022). Applied Behaviour Analysis (ABA). Retrieved from raisingchildren.net.au/autism/therapies-guide/aba

Raising Children’s Network (RCN). (2024). Positive behaviour for autistic children and teenagers. Retrieved from raisingchildren.net.au/autism/behaviour/understanding-behaviour/positive-behaviour-autistic-children-teenagers

Ragni, B., Boldrini, F., Mangialavori, S., Cacioppo, M., Capurso, M., & De Stasio, S. (2022). The efficacy of parent training interventions with parents of children with developmental disabilities. International Journal of Environmental Research and Public Health, 19(15), 9685. doi.org/10.3390/ijerph19159685

*Roux, G., Sofronoff, K., & Sanders, M. (2013). A randomized controlled trial of group Stepping Stones Triple P: A mixed-disability trial. Family Process, 52(3), 411–424.

Ruane, A., & Carr, A. (2019). Systematic review and meta-analysis of Stepping Stones Triple P for parents of children with disabilities. Family Process, 58(1), 232–246. doi.org/10.1111/famp.12352

*Ruane, A., Carr, A., Moffat, V., Finn, T., Murphy, A., O’Brien, O. et al. (2019). A randomised controlled trial of the group Stepping Stones Triple P training programme for parents of children with developmental disabilities. Clinical Child Psychology and Psychiatry, 24(4), 728–753.

Ryan, R. & Cochrane Consumers and Communication Review Group. (2013). Cochrane Consumers and Communication Review Group: Data synthesis and analysis. Retrieved from &/cccrg.cochrane.org.

*Salisbury, M. R., Roos, L. E., Horn, S. R., Peake, S. J., & Fisher, P. A. (2022). The Effectiveness of KEEP for families of children with developmental delays: Integrating FIND video coaching into parent management training-Oregon model: A randomized trial. Prevention Science, 23(6), 1029–1040. doi.org/10.1007/s11121-022-01344-w

Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I. et al. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. doi.org/10.1037/bul0000215

*Shapiro, C. J., Kilburn, J., & Hardin, J. W. (2014). Prevention of behaviour problems in a selected population: Stepping stones Triple P for parents of young children with disabilities. Research in Developmental Disabilities, 35(11), 2958–2975. 
doi.org/10.1016/j.ridd.2014.07.036

*Singh, N. N., Lancioni, G. E., Medvedev, O. N., Hwang, Y.-S., & Myers, R. E. (2021). A component analysis of the Mindfulness-Based Positive Behaviour Support (MBPBS) Program for mindful parenting by mothers of children with autism spectrum disorder. Mindfulness, 12(2), 463–475.

Snodgrass, M. R., Chung, M. Y., Biller, M. F., Appel, K. E., Meadan, H., & Halle, J. W. (2017). Telepractice in speech–language therapy: The use of online technologies for parent training and coaching. Communication Disorders Quarterly, 38(4), 242–254.

Skotarczak, L., & Lee, G. K. (2015). Effects of parent management training programs on disruptive behavior for children with a developmental disability: A meta-analysis. Research in Developmental Disabilities, 38, 272–287. 
doi.org/10.1016/j.ridd.2014.12.004

Sullivan, G. M., & Feinn, R. (2012). Using effect size-or why the P value is not enough. Journal of Graduate Medical Education, 4(3), 279–282. doi.org/10.4300/JGME-D-12-00156.1

*Suzuki, M., Yamada, A., Watanabe, N., Akechi, T., Katsuki, F., Nishiyama, T. et al. (2014). A failure to confirm the effectiveness of a brief group psychoeducational program for mothers of children with high-functioning pervasive developmental disorders: A randomized controlled pilot trial. Neuropsychiatric Disease and Treatment, 10, 1141–1153. doi.org/10.2147/NDT.S60058

Tarver, J., Palmer, M., Webb, S., Scott, S., Slonims, V., Simonoff, E. et al. (2019). Child and parent outcomes following parent interventions for child emotional and behavioral problems in autism spectrum disorders: A systematic review and meta-analysis. Autism: the International Journal of Research and Practice, 23(7), 1630–1644. doi.org/10.1177/1362361319830042

*Tellegen, C. L., & Sanders, M. R. (2014). A randomized controlled trial evaluating a brief parenting program with children with autism spectrum disorders. Journal of Consulting and Clinical Psychology, 82(6), 1193–1200.

Tellegen, C. L., & Sanders, M. R. (2013). Stepping Stones Triple P-Positive Parenting Program for children with disability: A systematic review and meta-analysis. Research in Developmental Disabilities, 34(5), 1556–1571. 
doi.org/10.1016/j.ridd.2013.01.022

Tevis, C., & Matson, J. (2022). Challenging behaviour in children with developmental disabilities: an overview of behavioural assessment and treatment methods. BJPsych Advances, 28, 401-409. doi.org/10.1192/bja.2022.59

Tomczak, M., & Tomczak, E. (2014). The need to report effect size estimates revisited: An overview of some recommended measures of effect size. Trends in Sport Sciences, 21(1). Retrieved from www.wbc.poznan.pl/Content/325867/5_Trends_Vol21_2014_ no1_20.pdf

*Turgeon, S., Lanovaz, M. J., & Dufour, M. M. (2021). Effects of an interactive web training to support parents in reducing challenging behaviors in children with autism. Behavior Modification, 45(5), 769–796.

United Nations. (2006). Convention on the Rights of Persons with Disabilities and Optional Protocol. Retrieved from 
social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd

Victoria State Government (2022). Inclusive Victoria: State disability plan 2022–2026. Melbourne: State of Victoria, Department of Families, Fairness and Housing.

Whitehouse, A., Varcin, K., Waddington, H., Sulek, R., Bent, C., Ashburner, J. et al. (2020). Interventions for children on the autism spectrum: A synthesis of research evidence. Brisbane: Autism CRC.

Appendix A: Understanding evidence in RCTs

This review only included evidence from randomised controlled trials (RCTs). RCTs are useful for understanding effectiveness because they seek to test whether an intervention is effective by examining outcomes for 2 groups of people (Johnson, 2021):

1. those who have received the intervention (usually called a treatment or intervention group)
2. those that have not (usually called a control or comparison group).

For example, an RCT may test whether children’s behaviours of concern improve after receiving an intervention and compare their behaviours to a group of children who didn’t receive the intervention.

RCTs randomly assign people to these groups so that factors such as participant characteristics (e.g. age, income, education) are equally distributed between groups. This reduces the chance that these external factors are the key influence on changes in children’s behaviours, rather than the intervention being studied (Akobeng, 2005; Johnson, 2021; MacLehose et al., 2000).

Once an intervention is delivered, it is usually considered effective if children’s behaviours improve more in the intervention group rather than the comparison group, and the difference in improvement is statistically significant. A statistically significant result means that it was very unlikely to have occurred by chance, and the intervention likely led to the improvements in behaviours (Sullivan & Feinn, 2012). However, a statistically significant finding on its own may not be meaningful in the ‘real world’ for clinicians, practitioners or families, especially when the difference in outcomes between the 2 groups is very small (Akobeng, 2005).

RCTs sometimes calculate effect sizes to understand the size of the difference in outcomes between the intervention and comparison group (Sullivan & Feinn, 2012; Tomczak & Tomczak, 2014). Effect sizes can be calculated using different statistical methods, and are often translated into general categories of small, medium and large effect sizes (Sullivan & Feinn, 2012).

While RCTs can be useful for understanding how effective interventions are, other study designs (e.g. qualitative research) can provide valuable and detailed information on how people experience and feel about interventions, and why an intervention works (Johnson, 2021). It can also be difficult to conduct RCTs with families and children in situations that reflect real-life service delivery environments (Johnson, 2021), and there are additional ethical considerations when randomising treatment and control groups for families experiencing multiple challenges or who have complex needs. Considering evidence from multiple sources and study designs can build a holistic view of families’ experiences.

Appendix B: Glossary

Appendix C: Detailed methodology

How this review was conducted

This review was conducted using the Cochrane rapid review guidelines (Garrity et al., 2021), which were adapted to fit the project’s scope. Guidance from Cochrane Consumers and Communication Review Group: data synthesis and analysis (Ryan & Cochrane Consumers and Communication Review Group, 2013) and Synthesis without meta-analysis (SWiM) in systematic reviews: reporting guidelines from the British Medical Journal (BMJ) (Campbell et al., 2020) informed data analysis and synthesis.

This resource was also guided by consultations with 10 experts and stakeholders. This group included 8 researchers (including National Disability Insurance Agency (NDIA) staff and university researchers) and 2 disability practitioners. Stakeholders included a person with disability and parents of children with disability. Stakeholders were consulted during initial scoping stages to help develop the scope and research question. Three stakeholders were consulted multiple times through the development of the resource to test the research question, the findings once analysis was complete, and to review the final paper.

Approaches to understanding disability

This review was informed by a human rights-based approach ⁷ and the social model of disability⁸.

Examples of how a rights-based approach and the social model of disability influenced this review include:

• Our search strategy excluded punishment-based interventions or practices that were exclusively restrictive (also called restrictive practice).
• Studies were only included if they measured children’s behaviour outcomes that met our definition of ‘behaviours of concern’. For example, non-harmful repetitive behaviours that may not be displayed by children without disability, such as stimming, were not included in the review.
• Our analysis understood children’s behaviours of concern as a form of communication and a response to their environment, not an inherent characteristic of the child or their impairment regardless of how the research studies defined, or did not define, behaviours of concern.

This practice guide provides a more in-depth discussion of rights-based approaches to understanding behaviours and the social model of disability.

Search strategy and search terms

The research question, search strategy and inclusion criteria focused on interventions that include parents or other primary caregivers of children with intellectual disability and autistic children. This was identified during consultation with stakeholders and topic scoping as a key population that requests support when children display behaviours of concern.

Four concepts including relevant keywords were used to search peer-reviewed literature in AIFS Catalogue Plus in July 2022. Concepts included: disability, children and young people, behaviours of concern, and interventions. An additional search was conducted on Google Scholar to identify literature that may not be included in AIFS Catalogue Plus.

Systematic searches of the peer-reviewed literature were conducted to identify evidence (published 2012–22) from randomised controlled trials (RCTs) on interventions that can be delivered to or implemented by parents to support their children with intellectual disability or autistic children who display behaviours of concern.

Data screening and analysis

Search results were uploaded to Covidence, an online research review tool that was used to manage the rapid review process.

To reduce the risk of bias, double screening was completed for 10% of search results (title and abstract and full text). Researchers used the study selection criteria (Table 4) and a decision-making hierarchy to independently screen studies. Discrepancies were resolved by discussion between the 2 reviewers. A total of 2,576 title and abstract records were screened, and 221 full texts were assessed for eligibility. Twenty studies were included in this review.

Data from included studies was extracted into Covidence. Extracted data comprised the characteristics of each study, including population characteristics, intervention characteristics, outcomes, key findings and limitations.

After data screening and extraction, a narrative synthesis was conducted, following the synthesis and analysis guidance outlined by Cochrane Consumers and Communication Review Group (Ryan & Cochrane Consumers and Communication Review Group, 2013) and SWiM guidelines from BMJ (Campbell et al., 2020). This included preliminary descriptive synthesis of study findings, exploring relationships in the data within and between studies, and considering the robustness of the synthesis and methods in included studies.

Table 4: Study selection criteria

Methodology limitations

There are several key methodological limitations of this review:

• A risk of bias assessment and formal quality appraisal of studies was not conducted. Therefore, the quality of the RCTs included in the review was not assessed and discussed in the synthesis of findings.
• Information about interventions found in specific intervention procedures and manuals were not obtained and analysed. This limits the ability to understand the core and common characteristics of effective interventions and which aspects of behavioural interventions contribute to behaviour change. However, the diversity of how intervention procedures are studied and reported may make this difficult.
• Other study designs, such as qualitative research (e.g. Dew et al., 2019; Meltzer et al., 2021), provide additional important information such as building in-depth understanding of families’ experiences. Including evidence from studies using other methods may provide a more detailed understanding of how parents and their children experience and respond to effective interventions.

Study design considerations

When understanding the effectiveness of interventions, it can be useful to consider the results alongside the study’s design and other factors that can affect the real-world implications of the findings. In this review, it is important to note that:

• There were a variety of measurement tools used to measure behaviours of concern. The type of measurement tool used can affect the level of bias in the study. For example, custom measurement tools can provide detailed assessments of behaviours from trained professionals. However, the lack of standardisation can make comparison with other interventions and measurement tools difficult.
• Smaller sample sizes can allow for more intensive interventions to be tested. However, conclusions about the effectiveness may not be generalisable to larger populations. Especially if the population group all have one specific diagnosis.
• It can be helpful to consider the study design when determining whether an RCT shows that an intervention can support reductions in children’s behaviours of concern. RCTs either examine if an intervention is better than no intervention (waitlist or care as usual control group) or which of 2 interventions is better (alternative intervention comparison group). When studies are comparing 2 interventions it is possible that both interventions can reduce behaviours of concern.
• It can also be useful to consider the participant characteristics. Most studies were conducted with parents of children with moderate or high levels of behaviours of concern. However, one study had a prevention and early intervention focus (Shapiro et al., 2014) and the parent coaching intervention was not reported as effective. The authors suggest participants’ low levels of behaviours of concern may mean there was limited room for improvement and could indicate that parent coaching is better suited to families with children with higher levels of behaviours of concern.

⁷A human rights-based approach to disability recognises that people with disability should have full and equal enjoyment of all human rights and freedoms and are active, valued members of society, capable of making decisions about their lives based on their ‘free and informed consent’ (United Nations, 2006, p. 18). It also acknowledges that a ‘person’s impairment is part of human diversity’ (Australian Council of Learned Academics [ACOLA], 2022, p. 75), and sometimes important adaptions are needed to ensure people with disability have equitable support to effectively exercise and enjoy their rights (UN, 2006).

⁸The social model of disability recognises that ‘disability’ is a result of the interaction between people living with impairments and the social and physical environmental barriers that can prevent people from exercising their rights and participating as equal members of society (UN, 2006). That is, the environmental barriers such as ‘system attitudes, practices, and structures’ are disabling, not the characteristics of an individual person (Department of Health and Human Services [DHHS], 2018, p. 10). The social model of disability implies that to fully support people with disability, social and physical barriers need to be removed (ACOLA, 2022; Commonwealth of Australia, 2021; Oliver, 1983).

Appendix D: Detailed study characteristic tables

Table 5: Detailed study characteristics

Notes: a Effective interventions were interventions that led to a statistically significant difference in child behaviour outcomes between the intervention and comparison group.

b Effect sizes were calculated using either Cohen’s d, eta-squared, or r-squared. The effect sizes were translated into the standardised categories of small, medium, or large for each calculation method to allow for comparison (Sullivan & Feinn, 2012).

c ‘Other’ diagnosis included language disorder, low birth weight, Cerebral Palsy, and ‘other’ categories that were not specified in studies (Durand et al., 2012; Roux et al., 2013; Ruane et al., 2019; Shapiro et al., 2014)

d Interactive Web Training (Turgeon et al., 2021) was reported as effective but was not recommended as a standalone treatment as 45% of participants did not complete the intervention and parents reported concerns around their child experiencing discomfort during the intervention The authors did not measure child discomfort and were unable to validate parent’s concerns.

ASD = Autism spectrum disorder; N/A = not applicable; NR = not reported.

Table 6: Intervention descriptions and results by intervention

Notes: a This information is based on information provided in RCT studies. Intervention procedure manuals were not accessed.

b Effective interventions were interventions that led to a statistically significant difference in child behaviour outcomes between the intervention and comparison group.

c Intervention format, duration and cadence refers to how the intervention was delivered in the RCT study included in this review. There may be other known ways to deliver these interventions that were not included in the study.

ASD = Autism spectrum disorder.