An exploratory study of dialectical behaviour therapy for emotional dysregulation and challenging behaviours after acquired brain injury.

BACKGROUND: Challenging behaviours and emotional dysregulation are common sequelae of acquired brain injury (ABI), but treatment remain underdeveloped. Dialectical behaviour therapy is an evidence-based therapy for emotional dysregulation. OBJECTIVE: To explore the feasibility and preliminary efficacy of dialectical behaviour therapy for ABI. METHODS: An exploratory longitudinal study that compared thirty adults with brain injury presenting persistent emotion dysregulation or challenging behaviours. Control group received a personalized multidisciplinary program only (n = 13). The dialectical behaviour therapy group received five months of emotion regulation skills learning as an add-on (n = 17). Preliminary efficacy was measured on Difficulties in Emotion Regulation Scale-16 and Quality of Life after Brain Injury total score and emotion subscore. RESULTS: Fourteen participants completed the dialectical behaviour therapy. This study provided preliminary evidence for the feasibility and acceptability of dialectical behaviour therapy. Repeated measures revealed improvement on the Difficulties in Emotion Regulation Scale-16 (-7.6 [-17.3; 1.7]; Pr = 0.95) and on the Quality Of Life emotion subscore (13.5 [-3.8; 30.9]; Pr = 0.94). CONCLUSION: This study raises important questions regarding the type of patients who can benefit from this intervention, necessary adaptations of dialectical behaviour therapy and the way it can help post-traumatic growth and identity reconstruction after ABI.

Qualitative Protocol of Chinese Parents and Siblings Experiences of Managing Challenging Behaviours of Adult Persons with Intellectual Disability in Hong Kong and Northern China.

BACKGROUND: While the literature has highlighted the immense challenges in caring for family members, it is still unclear what the needs of family carers of persons with intellectual disability and challenging behaviours are and what has worked for them. This study aims to examine 60 parents' and siblings' experiences in managing the challenging behaviours of their adult family member with intellectual disability whilst living at home. METHODS: A qualitative grounded theory approach using semi-structured interviews will be adopted. Purposive sampling will be used to recruit family carers who live with adult persons with intellectual disability and use one community service in Hong Kong. Three special schools for persons with intellectual disability from northern China will be approached. RESULTS: This study will aim to provide an in-depth understanding of the experiences of family carers and compare the different circumstances they face when managing the challenging behaviours of their adult relatives with intellectual disability in their family home. CONCLUSIONS: Although this study targets adults with intellectual disability, the findings will provide a point of reference for adolescents and younger persons who exhibit demanding and challenging behaviours and live with their families. Recommendations can guide the development of appropriate strategies to strengthen services for family carers.

A window into the reality of families living long term with challenging behaviours after a TBI.

Challenging behaviours are a long-term burden for people with traumatic brain injury (TBI) and their families. Families frequently shoulder the responsibility alone, but little is known about the strategies they use to manage these behaviours. This study aimed to 1) identify the coping strategies used by people with TBI living in the community and their family caregivers to manage challenging behaviours; and 2) describe the similarities and differences between strategies used by people with TBI and caregivers. In this qualitative descriptive design, individual semi-structured interviews were conducted with adults with TBI and their caregivers and were inductively analyzed. The sample included 10 dyads and two triads, totalling 12 caregivers (8 women) and 14 individuals with TBI (6 women; 21.71 ± 10.84 years post-injury). Participants' strategies were proactive (prevention), reactive (response), or retroactive (aftercare). Most strategies were described by caregivers. Some of them were effective and lasting, others not, reflecting how they adapted their approaches over time. Families put in place various strategies in their life's journey, such as giving feedback or adapting the environment. Despite these strategies supporting long-term community living, the need for ongoing support is underscored, as crises may still occur, impacting families' quality of life.

"It's Opened My Eyes to a Whole New World": Positive Behaviour Support Training for Staff and Family Members Supporting Residents With Dementia in Aged Care Settings.

OBJECTIVES: This study examined the acceptability and usefulness of Positive Behaviour Support (PBS) training in enhancing the capabilities of support staff and family members providing behaviour support to residents with dementia in residential aged care (RAC). METHODS: A mixed-methods pilot study was conducted across 3 RAC organisations, involving pre- and post-training questionnaire assessments for clinical leaders (n = 8), support staff (n = 37) and family members (n = 18). RESULTS: Findings indicated increased confidence among support staff and family members in providing behaviour support, with 96% indicating it would support their practices across settings. Key training benefits included identifying and addressing underlying causes of challenging behaviours. A majority (89%) expressed the need for further behaviour support training. CONCLUSION: Recommendations focus on developing systems to enable effective and collaborative behaviour support practices. Further research is needed to examine application of PBS principles and planning for residents living with dementia.

Effects of positive behaviour support delivered by direct staff on challenging behaviours and quality of life of adults with intellectual disabilities: A multicentre cluster-controlled trial.

BACKGROUND: Effects of staff provided positive behaviour support (PBS) for individuals with intellectual disabilities are unclear. METHOD: Using a multicentre non-randomised cluster controlled design, 26 teams of residential group homes, including 245 staff members of 167 individuals with intellectual disabilities, were allocated to a PBS or control group. Conducting multilevel analyses (n = 123) we examined individuals' changes in irritability, other challenging behaviours and quality of life. RESULTS: Compared to controls, irritability did not significantly decrease more in the intervention group, but lethargic behaviours did. Personal development and self-determination significantly increased. Irritability of individuals in the PBS group with higher levels of irritability or lower levels of intellectual disability significantly reduced more compared to controls. CONCLUSIONS: PBS was effective in reducing irritability of individuals with severe levels of irritability or intellectual disabilities. Moreover, PBS decreased lethargic behaviours and improved several domains of quality of life.

Managing challenging behaviours in adults with traumatic brain injury: A scoping review of technology-based interventions.

Challenging behaviours are one of the most serious sequelae after a traumatic brain injury (TBI). These chronic behaviours must be managed to reduce the associated burden for caregivers, and people with TBI. Though technology-based interventions have shown potential for managing challenging behaviours, no review has synthesised evidence of technology aided behaviour management in the TBI population. The objective of this scoping review was to explore what technology-based interventions are being used to manage challenging behaviours in people with TBI. Two independent reviewers analysed 3505 studies conducted between 2000 and 2023. Studies were selected from five databases using search strategies developed in collaboration with a university librarian. Sixteen studies were selected. Most studies used biofeedback and mobile applications, primarily targeting emotional dysregulation. These technologies were tested in a variety of settings. Two interventions involved both people with TBI and their family caregivers. This review found that technology-based interventions have the potential to support behavioural management, though research and technology development is at an early stage. Future research is needed to further develop technology-based interventions that target diverse challenging behaviours, and to document their effectiveness and acceptability for use by people with TBI and their families.

Training programme for community service providers who support adults with intellectual disabilities: A systematic quantitative literature review of single-case research.

BACKGROUND: Research on training direct support professionals to address challenging behaviour exhibited by adults with intellectual disabilities is essential in generating effective training approaches for this sector. This systematic review's objective was to evaluate the effects of training types and whether specific training delivery components influenced outcomes. METHODS: Following PRISMA (2020) guidelines, 16 single-case design studies were included that directly evaluated behaviour change of service providers training for adults with intellectual disabilities in community settings. Study quality was assessed using Horner et al. (Exceptional Children, 2005, 71(2), 165-180) criteria. The database searched included Academic Search Complete, CINAHL, Embase, ERIC, Psych Info, and Web of Science. RESULTS: Descriptive analysis of effect size outcomes suggested that all training types were associated with improved outcomes. Further, in situ training was associated with improved service provider performance. Interestingly, feedback was associated with poorer service provider performance. CONCLUSIONS: We provide possible explanations for this surprising outcome and propose future research.

Preferred outcome measures in treatments for challenging behaviour in individuals with intellectual disabilities: Results of an inclusive Delphi method.

BACKGROUND: Interventions for challenging behaviours in individuals with intellectual disabilities benefit from outcome monitoring that takes clients' preferences into account. We determined clients' and representatives' preferred outcome domains and measures to secure their involvement in treatment decisions for challenging behaviours. METHOD: We used an inclusive Delphi method. A focus group of individuals with mild intellectual disabilities and representatives of those with moderate and severe intellectual disabilities prepared the first round by assisting us in collecting possible outcomes. Panels of individuals with intellectual disabilities and representatives were composed to achieve consensus on instruments for preferred outcome domains. RESULTS: Preferred outcome domains were behaviour, side-effects of psychotropic drugs, quality of life, daily functioning, caregiver burden and family quality of life. Corresponding outcome measures included self-report, interview and proxy-scales, including spoken versions. CONCLUSION: Including the preferred domains on outcomes of interventions for challenging behaviours is recommended. Research on corresponding outcome measures is necessary.

A model for fostering community capacity to support adults with intellectual disabilities who engage in challenging behaviour: A scoping review.

Developmental support agencies support many adults with intellectual disabilities in the community. Unfortunately, these adults often exhibit high rates of challenging behaviour, which present significant pressures on these service providers. Agencies need to develop effective means of increasing their capacity to provide quality support. Previous systematic reviews found that training staff in positive behaviour supports can improve outcomes; however, the factors facilitating training's effects, long-term effectiveness, and outcomes for service users have yet to be determined. We conducted a scoping review of 98 journal articles and book chapters to develop a model for fostering capacity development drawing from Organizational Behaviour Management and Knowledge Translation theories. Some relevant factors include features of the inner and outer organizational contexts, training approaches (e.g., behavioural skills training & in-situ coaching), ongoing support and feedback. This model may lead to more effective and enduring treatment programs and improved support for adults with intellectual disabilities.

Clinical perspectives on delivering a Positive Behaviour Support intervention for challenging behaviours following acquired brain injury.

Challenging behaviours are distressing sequelae for people with acquired brain injury (ABI) and their families. Positive Behaviour Support (PBS) is a collaborative approach focussing on improving quality of life for individuals with ABI presenting with challenging behaviours. This qualitative study explored clinicians' experiences of a 12-month intervention (PBS+PLUS) for adults with ABI and their family/carers. Semi-structured interviews were conducted with eight clinicians trained in neuropsychology (n = 5), occupational therapy (n = 3), speech pathology (n = 2), with two clinicians trained in two of these disciplines. Interviews were analysed through reflexive thematic analysis. Three themes were identified: Shifting clinical identity; Working as equals; Adapting to the environment. Participants experienced PBS+PLUS as a difficult approach to learn but one which enhanced overt client communication and comfort with their clinical fallibility. PBS+PLUS involved giving clients equal status in the clinician-client relationship which for some clients and families was challenging. Finally, PBS+PLUS was perceived as problematic to implement in some work settings (e.g., involving high staff turnover). Clinicians' recommendations for future implementation included thorough training and supervision and early setting of client expectations. With increasing interest in PBS to address challenging behaviours after ABI, these findings will guide PBS+PLUS translation for community clinicians.

The Acceptability and Usefulness of Positive Behaviour Support Education for Family Carers of People With Frontotemporal Dementia: A Pilot Study.

AIM: This pilot study investigated the acceptability and usefulness of 4 weekly Positive Behaviour Support (PBS) education sessions (delivered face-to-face and online) for family carers of individuals diagnosed with behavioural-variant frontotemporal dementia (bvFTD). These sessions were adapted from the Family-directed Approach to Brain injury (FAB)-PBS program to the FTD population. METHODS: A pre-test post-test mixed-methods design was utilized. Primary outcome measures included a Carer Confidence questionnaire and post-intervention Feedback Questionnaire. Assessments were conducted prior to the 4-week education program, immediately following the final session and a 3 months follow-up. RESULTS: Ten family carers completed the 4 PBS education sessions and indicated that the program was helpful in providing behaviour support. No significant changes in confidence ratings were found before and following the education sessions. A majority of participants, however, reported positive changes to their approach in providing behaviour support, with key themes including 'recognising the function of behaviour', 'changing their own behaviour' and 'promoting a calmer approach'. CONCLUSIONS: The FAB-PBS education sessions demonstrate to be an acceptable approach to increasing the capability of family carers in providing behaviour support to individuals with FTD, which will need to be confirmed in a larger feasibility study.

The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK.

Caregivers of a child with a neurodevelopmental disability are more vulnerable to mental health difficulties. These difficulties are influenced by the child's challenging behaviours, and the caregiver's coping strategies; factors impacted by the COVID-19 pandemic. An online mixed methods survey was conducted on caregivers of children with neurodevelopmental disabilities (n = 43) and children who are typically developing (n = 67). The results showed that presence of challenging behaviours related to neurodevelopmental disability, and caregiver coping strategies predicted caregiver psychological distress during lockdown. Themes that emerged included 'confusing messages and guidance', 'loss of freedom' and 'unsupported and forgotten'. The results demonstrate the pressing need for the implementation of appropriate support to protect the mental health of caregivers across the UK.

Doll Therapy Intervention Reduces Challenging Behaviours of Women with Dementia Living in Nursing Homes: Results from a Randomized Single-Blind Controlled Trial.

Background: Doll therapy (DT) is a non-pharmacological intervention for the treatment of the behavioural and psychological symptoms of dementia (BPSD). We designed a single-blind randomized controlled trial of the 30-day efficacy of DT in reducing the BPSD, professional caregivers' distress and patients' biomarkers of stress, and in improving the exploration and caregiving behaviours. Methods: We randomly assigned 134 women with moderate-to-severe dementia living in nursing homes (NHs) to a DT intervention (DTI, 67) or a sham intervention with a cube (SI, 67). Results: From the first to the 30th session, the DTI group showed a significant decrease in the Neuropsychiatric Inventory-NH (NPI-NH) total score and in the NPI-NH-Distress score compared to the SI group (both p < 0.001). We observed a greater interest in the doll than in the cube, a greater acceptance of a separation from the nurse among DTI participants, and caregiving and exploratory behaviours towards the doll. There were no differences between the groups in the stress biomarkers. Conclusions: Consistent with attachment theory, our findings support the 30-day efficacy of DT, as this non-pharmacological intervention promotes perceptions of security by creating a situation in which patients feel confident and engaged in a caregiving relationship with the doll and reduces the challenging behaviours that are stressful for professional caregivers.

Strategies used by care home staff to manage behaviour that challenges in dementia: A systematic review of qualitative studies.

BACKGROUND: Psychotropic drugs are often prescribed to manage behaviour that challenges in care home residents with dementia but contravene guidelines as evidence shows their use increases the risk of strokes and death. Therefore, a review is needed that conceptualises understanding of the pharmacological and non-pharmacological strategies implemented by care home staff to manage behaviour that challenges in dementia and the factors that influence decision-making. This knowledge is important to develop dementia guidelines to implement a sustainable non-pharmacological approach to support residents with behaviour that challenges. AIM: To review qualitative studies to synthesise understanding of strategies implemented by care home staff to manage behaviour that challenges in dementia. METHODS: This systematic review involved a synthesis of qualitative data (PROSPERO protocol registration CRD42020165948). Searches of three electronic databases, PubMed, PsycINFO and CINAHL were conducted from inception until July 2021, supplemented by grey literature searches. Studies were included if they used qualitative methods and explored how care home staff respond to behaviour that challenges; data exploring other aspects of dementia care were excluded. Study quality was assessed using the Critical Appraisal Skills Programme checklist. Thematic synthesis was used to conceptualise understanding of the strategies implemented by care home staff to manage behaviour that challenges in dementia. FINDINGS: In total 1151 records were identified of which 34 studies were included in the review. Three themes emerged, 'Putting out the fires', refers to reactive strategies, implemented by staff to quell behaviour that challenges. However, if these strategies fail, staff may resort to pharmacological approaches for convenience to suppress these behaviours. The theme 'Personhood, human rights and respect' highlights the need for people with dementia to feel valued and useful by engaging residents in meaningful activities. Furthermore, the theme "Person focused approach - A paradigm shift" reflects changes in culture, required to implement non-pharmacological strategies to behaviour management these include staff training, collaboration and equitable decision-making. CONCLUSIONS: This review has identified strategies used by care home staff to manage behaviour that challenges. Non-pharmacological approaches to support residents with behaviour that challenges require staff training in behaviour management and psychotropic medicine management as part of their formal education program, and enhanced opportunities for collaboration and decision-making. In addition, residents should receive person focused support to facilitate participation in meaningful activities. These findings will be beneficial in developing guidelines to implement sustainable non-pharmacological approaches to manage behaviour that challenges in dementia.

Exploring the association of staff characteristics with staff perceptions of quality of life of individuals with intellectual disabilities and challenging behaviours.

BACKGROUND: This study aimed to examine the associations between individual staff and staff team characteristics and quality of life of individuals with intellectual disabilities and challenging behaviours. METHOD: With multilevel analyses, we examined educational level, experience, attitudes and behaviours of 240 staff members, in relation to their perception of quality of life of 152 individuals with intellectual disabilities and challenging behaviours they cared for. RESULTS: Two individual staff characteristics were related to better quality of life: higher educational and self-reflection levels. Of the team characteristics, higher educational level, higher self-efficacy and more friendly behaviour were associated with better quality of life. Unexpectedly, higher staff-individual ratio was related to lower quality of life. CONCLUSIONS: Both individual staff and staff team characteristics are associated with quality of life, indicating the need to take staff team characteristics into account when examining quality of life.

Acknowledging caregivers' vulnerability in the managment of challenging behaviours to reduce control measures in psychiatry.

BACKGROUND: The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied. PURPOSE: This study examined the moral experiences of caregivers related to challenging behaviours' management and alternatives to control measures. RESEARCH DESIGN: Using Charles Taylor's hermeneutic framework, a 2-month focused ethnography with a participatory approach was used. PARTICIPANTS AND RESEARCH CONTEXT: Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity. ETHICAL CONSIDERATIONS: The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants. FINDINGS: By accounting for caregivers' moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver's vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures. DISCUSSION: A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability. CONCLUSION: The recognition of caregiver's vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers' self-concern can be understood as fostering mutual respect.

German Law Reform Does Not Reduce the Prevalence of Coercive Measures in Residential Institutions for Children, Adolescents, and Young Adults With Intellectual and Developmental Disabilities.

Background: Approximately 10% of children, adolescents and young adults with an intellectual and developmental disability (IDD) in Bavaria live in residential institutions. 2015 saw media reports raising suspicions about excessive use of coercive measures (cM) in those institutions. Until a law reform at the end of 2017 made permission from family courts mandatory for cM, their use was governed by parental consent. The REDUGIA project conducted a representative survey comparing cM and their relation to challenging behaviour (cB) and employee stress in Bavaria pre and post reform. Methods: We sent questionnaires to 65 residential institutions for children, adolescents and young adults with IDD in 2017 (pre reform, T1) and 2019 (post reform, T2). To assess changes, we analysed data from all available questionnaire pairs (T1 and T2, N = 43). We calculated paired t-test and correlative analyses concerning the relationship between cB, cM, and employee stress. Results: The number of residents overall (T1: N = 1,661; T2: N = 1,673) and per institution (T1: m = 38.6 ± 32.0; T2: m = 38.9 ± 34.5, p = 0.920) remained stable. We did not see any changes in the Index cB (p = 0.508) or the proportion of residents per institution displaying various types of challenging behaviour (all ps>0.220). There was no change in the Index cM (p = 0.089) or any indicator of employee stress, all ps > 0.323. At follow-up, the Index cB correlated positively with the Index cM (r = 0.519 p < 0.001). Regarding employee stress, the Index cB correlated positively with the frequency of sick leave (r = 0.322, p = 0.037) and physical attacks on employees (r = 0.552, p < 0.001). The Index cM also correlated positively with the frequency of sick leave (r = 0.340, p = 0.028) and physical attacks on employees (r = 0.492, p = 0.001). Discussion: Coercive measures are not a general phenomenon, but are focused on specialised institutions. The law reform did not lead to changes in the number of children, adolescents and young adults with IDD affected by coercive measures in residential institutions in Bavaria. There were still large discrepancies between institutions in the prevalence of challenging behaviour and coercive measures. Coercive measures were associated with challenging behaviour and employee stress. Taken together, findings from REDUGIA emphasise the need to prevent challenging behaviour and thus coercive measures.

Comprehensive Assessment of Triggers for Behaviours of Concern Scale (CATS): Initial Development.

Challenging behaviour displayed by people with intellectual disabilities (ID) can be difficult to manage if caregivers do not understand the reasons for the behaviour. Identifying the contextual variables/triggers for the behaviour is likely to help undertake a functional analysis leading to a person-centred positive behaviour support plan. Currently, a limited number of checklists are available for trigger assessment and none were developed using an interview with the family caregivers. This article describes the development and contents of the comprehensive assessment of triggers for behaviours of concern scale (CATS). CATS was developed in two stages. Stage 1 used a 'bottom-up' approach, in which caregivers of adults with ID who show aggressive behaviour were interviewed to identify the triggers for aggression. In stage two, using a 'top-down' approach, a comprehensive literature review was conducted to gather items from existing trigger checklists. Trigger items from both stages were combined and the duplicates were removed. The final list in CATS consists of 333 contextual triggers categorised under five main domains and 12 subdomains. CATS can be used by caregivers to identify triggers or antecedents of challenging behaviour. Further work is needed to test its psychometric properties, utility, and acceptability.

The prevalence and determinants of inappropriate sexual behaviour in people with acquired brain injury in nursing homes.

AIMS: Establishing the prevalence of inappropriate sexual behaviour, concurrent challenging behaviours and the determinants of inappropriate sexual behaviour among patients with acquired brain injury ≤65 years of age in Dutch nursing homes. DESIGN: Cross-sectional, observational study in acquired brain injury special care units spreads throughout the country. METHODS: Nursing homes were recruited through the national expertise network for patients with severe acquired brain injury, regional brain injury teams and by searching the Internet. Patient characteristics were collected through digital questionnaires. Inappropriate sexual behaviour was assessed with the St. Andrews Sexual Behaviour Assessment, concurrent challenging behaviours with the NeuroPsychiatric Inventory-Nursing Home Version and the Cohen-Mansfield Agitation Inventory, cognition with the Mini-Mental State Examination and activities of daily living with the Disability Rating Scale. Psychotropic drug use was retrieved from the electronic prescription system. Associations between determinants and inappropriate sexual behaviour were examined using multilevel multivariate linear regression model analyses. Data collection started in June 2017 and ended in April 2019. RESULTS: Of the 118 included patients, 38.1% had one or more inappropriate sexual behaviours. Verbal comments (30.1%) and non-contact behaviour (24.8%) were the most prevalent types of inappropriate sexual behaviour. Less severe behaviours were more common than more severe behaviours. The most frequent concurrent challenging behaviours were agitation, aggression and hyperactivity. Physical aggression was associated with more inappropriate sexual behaviour. Being married and pain were associated with less inappropriate sexual behaviour. CONCLUSION: Inappropriate sexual behaviour is prevalent in patients with acquired brain injury ≤65 years of age residing in nursing homes. IMPACT: Inappropriate sexual behaviour may have impact not only on the patients themselves but also on nursing staff. Insight into the magnitude, severity, course and concurrent challenging behaviours, sexuality and quality of life could give direction to the kind of interventions and education that is needed. The ultimate goal is to develop appropriate care for this vulnerable group of patients, specifically psychosocial interventions and appropriate use of psychotropic drugs.

A systematic review of the behaviours associated with depression in people with severe-profound intellectual disability.

The assessment of depression in people with severe to profound intellectual disability (severe-profound ID) is challenging, primarily due to inability to report internal states such as mood, feelings of worthlessness and suicidal ideation. This group also commonly presents with challenging behaviours (e.g. aggression and self-injury) with debate about whether these behaviours should be considered 'depressive equivalents' or are sensitive for, but not specific to, depression in severe-profound ID. We conducted a systematic review exploring behaviours associated with depression and low mood in individuals with severe-profound ID. The review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (2009) guidelines. Three electronic databases were searched (Embase, PsycINFO and Ovid MEDLINE), and 13 studies were included and rated for quality. Few studies were rated as having high methodological quality. Behaviours captured by standard diagnostic schemes for depression (e.g. Diagnostic and Statistical Manual of Mental Disorders and International Classification of Diseases) showed a relationship with depression in severe-profound ID, including the two core symptoms (depressed affect and anhedonia), as well as irritability, sleep disturbance, psychomotor agitation, reduced appetite and fatigue. Challenging behaviours such as aggression, self-injury, temper tantrums, screaming and disruptive behaviour were associated with depression. Challenging behaviours show a robust relationship with depression. Whilst these behaviours may suggest an underlying depression, study limitations warrant caution in labelling them as 'depressive equivalents'. These limitations include not controlling for potential confounds (autism, other affective disorders and pain) and bias associated with comparing depressed/non-depressed groups on the same behavioural criteria used to initially diagnose and separate these groups. Future studies that use depressive measures designed for ID populations, which control for confounds and which explore low mood irrespective of psychiatric diagnosis, are warranted to better delineate the behaviours associated with depression in this population (PROSPERO 2018: CRD42018103244).