Challenging Behaviour In People Research Articles

Stakeholder experiences of deprescribing psychotropic medicines for challenging behaviour in people with intellectual disabilities

PurposeEvidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to promote deprescribing, such as stopping the overprescribing of medication in people (with learning disabilities, autism or both). To successfully implement deprescribing initiatives, we need to understand how to engage stakeholders in the process.Design/methodology/approachIn a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines for people of all ages with intellectual disabilities and challenging behaviour. As a part of the original review, we searched for evidence about stakeholders’ experiences of the psychotropic deprescribing process, which was synthesised and reported within the current study.FindingsSix studies were identified. Involving carers and people with intellectual disabilities, providing ongoing support and improving access to non-pharmacological interventions, including positive behaviour support, may contribute to successful outcomes, including reducing or stopping psychotropic medicines and improving quality of life. Implementing psychotropic deprescribing requires a multidisciplinary collaborative care approach and education for stakeholders.Originality/valueThere have been no previous reviews of stakeholder experiences of deprescribing psychotropic medications for people with intellectual disabilities and challenging behaviour. The existing literature is scant, and further research is needed.

The potential for medicinal cannabis to help manage challenging behaviour in people with intellectual disability: A perspective review.

Around 2% of the population have intellectual disabilities. Over one-third people with intellectual disabilities (PwID) present with 'challenging behaviour', which nosologically and diagnostically is an abstract concept. Challenging behaviour is influenced by a range of bio-psycho-social factors in a population, which is unable to suitably comprehend and/or communicate concerns. This predisposes to poor health and social outcomes. There is no evidence-based treatments for managing challenging behaviour. Cannabidiol (CBD) and tetrahydrocannabinol (THC) are being trialled for a range of disorders, which are over-represented in PwID and provoke challenging behaviours, such as severe epilepsy, spasticity, post-traumatic stress disorder, social phobia, pain, etc. This perspective review explores the different conditions, which benefit from medicinal CBD/THC preparations, by analysing recent literature from neurobiological, pre-clinical and clinical studies related to the topic. The evidence is synthesised to build an argument of the therapeutic benefits and challenges of medicinal cannabis to manage severe challenging behaviour in PwID. There is developing evidence of medicinal CBD/THC improving psychiatric and behavioural presentations in general. In particular, there is emergent proof in certain key areas of influence of medicinal CBD/THC positively supporting challenging behaviour, for example in children with neurodevelopmental disorders. However, there are significant challenges in employing such treatments in vulnerable populations such as PwID. Further clinical research for the considered use of medicinal CBD/THC for challenging behaviour management in PwID is needed. Strong co-production with experts with lived experience is needed for further testing to be done in this exciting new area.

The Influence of Everyday Acoustic Environments on the Challenging Behavior in Dementia: A Participatory Observation Study in Nursing Homes.

Challenging behavior (CB) is a group of behaviors, reactions and symptoms due to dementia, which can be challenging for the caregivers. The study aims to research the influence of acoustics on CB in people with dementia (PwD). An ethnographic method was used to study the daily life of PwD in their nursing homes with a specific focus on how people react to everyday environmental sounds. Thirty-five residents were included in the sample based on purposeful, homogeneous group characteristics and sampling. Empirical data were collected using 24/7 participatory observations. The collected data were analyzed using a phenomenological-hermeneutical method: a naïve understanding, a structural analysis and a comprehensive understanding. The result shows that the onset of CB depends on whether the resident feels safe and is triggered by an excess or lack of stimuli. The excess or shortage of stimuli and whether and when it affects a person is personal. It depends on various factors, the person's state and the time of day, the nature of the stimuli, familiarity, or strangeness is also a determining factor for the onset and progression of CB. The results can form an essential basis for developing soundscapes to make the PwD feel safe and reduce CB.

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.

Withdrawing Antipsychotics for Challenging Behaviours in Adults with Intellectual Disabilities: Experiences and Views of Prescribers

International current best practice recommends the discontinuation of antipsychotics for challenging behaviours in people with intellectual disabilities (ID), due to lack of evidence of efficacy and risks of harmful side-effects. In clinical practice, discontinuation may be difficult. The aim of this study was to gain insight into prescribers' practice by investigating their experiences with the discontinuation of long-term antipsychotics for challenging behaviour. From professionals' associations thirty-four registered ID physicians, psychiatrists and specialist mental healthcare nurses were recruited who completed an online questionnaire in this survey-study. Almost all participants had attempted to deprescribe antipsychotics for their patients with ID. Sixty-five percent of participants achieved complete discontinuation in 0-25% of their patients, but none in over 50%. Barriers were a lack of non-pharmaceutical treatments for challenging behaviours and caregivers' and/or family concern. Seventy percent of participants indicated that their institutions had encouraged implementing their discontinuation policies in line with the new Dutch Act on Involuntary care and a new Dutch multidisciplinary guideline on problem behaviour in adults with ID. Support and facilitation of clinicians from institutions' managers and political and professional bodies may be helpful in further implementation of best practice in the treatment of challenging behaviour in people with ID.

Barriers Facing Direct Support Professionals When Supporting Older Adults Presenting with Intellectual Disabilities and Unusual Dementia-Related Behavior: A Multi-Site, Multi-Methods Study

Introduction: Increased life expectancy among people with intellectual disabilities (ID) raises the risk of their diagnosis being superimposed by behavioral and psychological symptoms of dementia (BPSD). The difficulties facing direct support professionals dealing with this is an emerging, under-investigated issue. The study investigates direct support professionals’ perceptions and experiences of their daily support for aging people with ID presenting with superimposed BPSD. Method: Twenty-four direct support professionals from long-term care facilities responded to clinical vignettes and attended focus groups conducted to investigate perceptions and lived experiences of the barriers and struggles they faced. Results: Direct support professionals’ reactions to vignettes revealed their difficulties recognizing BPSD superimposed on the known challenging behaviors of people with ID. Focus groups highlighted daily struggles with BPSD, the lack of knowledge about detecting and dealing with them, and associated somatic and psychopathological diseases of aging. Conclusion: Improved knowledge transfer about good practices for person-centered support to aging people with ID presenting with BPSD is strongly recommended.

The impact of a training intervention on nursing care for people with dementia in long-term care: A quasi-experimental study

Various dementia training interventions have been developed for nursing staff, but there is inconclusive evidence on their effectiveness and which elements are key to positive outcomes. The aim of this study was to evaluate how nurses assess the prevalence of challenging behavior of people with dementia, nursing staff members’ responses to challenging behavior, and nurses’ competence, before the training and three and 12 months after the training. The main content of the training intervention was advancing person-centered care and its development. Data were collected through a survey of nursing staff ( n = 127) at two Finnish nursing homes across three distinct time points. The TREND statement was used to enhance the quality and transparency of the research. The prevalence of challenging behavior in the experimental group significantly decreased one year after training, while no change was observed in the control group. No change in nursing staff members’ responses to challenging behavior was observed in either group over the study period. Nurses in the experimental group demonstrated significant improvements in self-assessed competence both three months and one year after the training intervention. Hence, regular nursing staff training can decrease the prevalence of challenging behavior among older people with dementia and enhance nurses’ competence in nursing. The support of supervisors plays a significant role in these changes.

Algorithm-based pain management for people with dementia in nursing homes.

Algorithm-based pain management for people with dementia in nursing homes.

Behavioural phenomena in persons with an intellectual developmental disorder according to the level of emotional development.

Challenging behaviours in people with an intellectual developmental disorder (IDD) are complex and often difficult to understand. The developmental perspective may provide additional insights into the specific behavioural patterns and underlying motives in different emotional reference ages. The behaviours of 185 adults with IDD who were admitted to psychiatry were systematically assessed with the Aberrant Behaviour Checklist (ABC) and the Modified Overt Aggression Scale (MOAS). The association of the different behaviours with various emotional reference age groups as assessed with the Scale of Emotional Development - Short (SED-S) was analysed to deduce behavioural patterns typical for a certain level of functioning. Overall, the severity of challenging behaviours decreases in higher emotional reference age groups. Physical aggression was most prevalent in persons in the second phase of emotional development (7-18months reference age). In SED-S-1 (reference age 0-6months), the persons appeared to be searching for physical comfort and showed high scores in social withdrawal, stereotypies and aggression towards the self. Persons functioning in SED-S-2 (reference age 7-18months) scored highest in irritability and physical aggression (searching for security), while those in SED-S-3 (19-36months) exhibited the searching for autonomy type characterised by defiant and socially inappropriate behaviours. Persons with an emotional reference age of 4-7years (SED-S-4) showed inappropriate speech, verbal self-regulation and depressive-like behavioural aspects (searching for identity). The behavioural phenomena exhibited in a certain emotional reference age may support the clinician to differentiate behavioural problems from psychopathological symptoms to yield the proper diagnosis.

Estimation of the minimal clinically important difference on the Aberrant Behaviour Checklist–Irritability (ABC-I) for people with intellectual disabilities who display aggressive challenging behaviour: A triangulated approach

BackgroundThe minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome. AimTo determine the MCID on the Aberrant Behaviour Checklist–Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities. Method and proceduresWe utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour. Outcomes and resultsWe did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6). Conclusions and implicationsThe MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest.

Aggressive challenging behavior in adults with intellectual disability: An electronic register-based cohort study of clinical outcome and service use.

Aggressive challenging behavior in people with intellectual disability is a frequent reason for referral to secondary care services and is associated with direct harm, social exclusion, and criminal sanctions. Understanding the factors underlying aggressive challenging behavior and predictors of adverse clinical outcome is important in providing services and developing effective interventions. This was a retrospective total-population cohort study using electronic records linked with Hospital Episode Statistics data. Participants were adults with intellectual disability accessing secondary services at a large mental healthcare provider in London, United Kingdom, between 2014 and 2018. An adverse outcome was defined as at least one of the following: admission to a mental health hospital, Mental Health Act assessment, contact with a psychiatric crisis team or attendance at an emergency department. There were 1,515 patient episodes related to 1,225 individuals, of which 1,019 episodes were reported as displaying aggressive challenging behavior. Increased episode length, being younger, psychotropic medication use, pervasive developmental disorder (PDD), more mentions of mood instability, agitation, and irritability, more contact with mental health professionals, and more mentions of social and/or home care package in-episode were all associated with increased odds of medium-high levels of aggression. Risk factors for an adverse clinical outcome in those who exhibited aggression included increased episode length, personality disorder, common mental disorder (CMD), more mentions of agitation in-episode, and contact with mental health professionals. PDD predicted better outcome. Routinely collected data confirm aggressive challenging behavior as a common concern in adults with intellectual disability who are referred for specialist support and highlight factors likely to signal an adverse outcome. Treatment targets may include optimizing management of CMDs and agitation.

Creative Art Therapy as a Non-Pharmacological Intervention for Dementia: A Systematic Review.

Background:Non-pharmacological therapies have been shown to be effective in managing challenging behavior in people with dementia. However, the efficacy of art therapy has yet to be determined.Objective:In the present systematic review, we evaluate the efficacy of art therapy as a non-pharmacological intervention for dementia and examine whether art therapy improves wellbeing and quality of life while decreasing biological and psychological symptoms of dementia (BPSD).Methods:Research undertaken between 2015 and 2020 was examined and a total of seventeen studies met the specified search criteria, with 853 participants (657 people with dementia, 180 formal and informal carers, and 16 volunteers) involved.Results:We identified four outcome domains: wellbeing, quality of life, BPSD, and cognitive function. One or more significant outcomes as having an impact on the efficacy of the intervention were reported in 88% (15/17) of the studies, whereas 17% (3/17) demonstrated significant outcomes across quality of life, wellbeing, and BPSD.Conclusion:People with dementia benefit from art therapy. These interventions when incorporating elements of being ‘in the moment’ increase opportunities for communication between people with dementia and their caregiver(s) and facilitate person-centered therapeutic activities.

Epilepsy, anti-seizure medication, intellectual disability and challenging behaviour – Everyone’s business, no one’s priority

PurposePeople with Intellectual Disability (ID) and epilepsy are more likely to experience psychiatric conditions, challenging behaviour (CB), treatment resistance and adverse effects of anti-seizure medications (ASM) than those without. This population receives care from various professionals, depending on local care pathways. This study evaluates the training status, confidence, reported assessment and management practices of different professional groups involved in caring for people with ID, epilepsy and CB. MethodsA cross sectional survey using a questionnaire developed by expert consensus which measured self-reported training status, confidence, and approaches to assessment and management of CB in people with ID and epilepsy was distributed to practitioners involved in epilepsy and/or ID. ResultsOf the 83 respondents, the majority had either a psychiatry/ID (n = 39), or Neurology/epileptology background (n = 31). Psychiatry/ID and Neurology/epileptology had similar confidence in assessing CB in ID-epilepsy cases, but Psychiatry/ID exhibited higher self-rated confidence in the management of these cases. While assessing and managing CB, Psychiatry/ID appeared more likely to consider mental health aspects, while Neurology/epileptology typically focused on ASM. ConclusionPsychiatry/ID and Neurology/epileptology professionals had varying training levels in epilepsy, ID and CB, had differing confidence levels in managing this patient population, and considered different factors when approaching assessment and management. As such, training opportunities in ID should be offered to neurology professionals, and vice versa. Based on the findings, a best practice checklist is presented, which aims to provide clinicians with a structured framework to consider causal explanations for CB in this population.

Residents’ and resident representatives’ perspectives on the influence of the organisational environment on challenging behaviour

BackgroundThis study explored the perspectives of residents of residential disability service organisations and resident representatives on the influence of the organisational environment on challenging behaviour in people with intellectual disabilities (ID). MethodSixteen residents and representatives from four specialised Dutch disability service organisations were interviewed. Data were analysed using a grounded theory approach, with a sensitising frame based on Bronfenbrenner’s ecological theory. ResultsSome organisational factors (e.g. staff turnover, insufficient finances) can have negative effects on interactions among residents and staff and family members, resulting in more challenging behaviour, but other organisational factors (e.g. shared vision, values and expectations, competent staff) can positively influence staffs’ attitudes and actions, which in turn helps to manage challenging behaviour in people with ID. ConclusionsResidents’ and representatives’ perspectives provide a better understanding of the positive and negative influences of the organisational environment on challenging behaviour in people with ID.

Preventing Challenging Behaviors in People with Neurodevelopmental Disabilities

We review the current literature on preventing challenging behaviors in people with neurodevelopmental disabilities. The goal of the review is to identify existing best practices shown to prevent or reduce challenging behaviors. We then review emerging areas of innovation that may help contribute to a more robust approach to prevent the development of these behaviors. Preventative interventions that include family-based protective factors, communication skills, social competence, and/or functional skills show evidence of reducing or preventing challenging behaviors. Research on the emergence of challenging behaviors from stereotypy suggests an additional avenue for prevention, as does the diagnosis and treatment of health conditions that can contribute to challenging behaviors. There is also a growing literature suggesting that biological factors such as behavioral phenotypes and gene variants associated with aggression may be viable avenues for prevention research. This paper shows that the prevention of challenging behaviors is a tangible possibility and raises areas for future research to more robustly develop a prevention science focused on pre-empting the development of challenging behaviors in people with neurodevelopmental disabilities.

Development of the guideline ‘Challenging behaviour in adults with intellectual disability’

Abstract Background Challenging Behaviour (CB) is a common problem among people with intellectual disability (ID), leading to a lower quality of life and a negative impact on the emotional well-being of family, staff and fellow clients. Additionally, reduced access to community services and (avoidable) high consumption of specialist care has been reported. This presentation will offer information on the development and content of the Dutch multidisciplinary guideline ‘Challenging behaviour in adults with ID’ that will be published in 2019. Methods The guideline was developed on the basis of the methodologic strategy of the AGREE II instrument. Two systematic reviews were conducted. Additionally, healthcare professionals were surveyed through an online questionnaire, interviews (n = 14) and focus groups (n = 6), and interviews were conducted with adults with ID (n = 20) and their family (n = 16). The draft guideline was reviewed by stakeholders and underwent a practice test. Results The first module of the guideline describes the assessment of (1) the CB itself, (2) potential factors that contribute to the presence or continuation of CB, and (3) the context in which CB occurs. Implementation will lead to a comprehensive, integrated diagnosis and assessment of the CB, the person and context. Module 2 enables health professionals to systematically and transparently select and apply interventions to resolve CB, whilst taking into account multiple factors as well as the specific context in which the CB occurs. Module 3 provides the medical, legal and ethical framework for (off-label) prescription of psychotropics. It explains the process for starting and discontinuing (off-label) psychotropics, the selection of appropriate medication and dosages, and the monitoring and evaluation of effects and side-effects. Conclusions The guideline is based on state of the art scientific and practice-based evidence and will contribute to a more structured approach in the care for people with ID and CB. Key messages Challenging behaviour is a common problem among people with intellectual disability and can have a negative impact on quality of life and the emotional well-being of family, staff and fellow clients. The development of the multidisciplinary guideline ‘Challenging behaviour in adults with ID’ can help to better understand and treat challenging behaviour in people with ID.

Challenging behaviour or untreated ADHD?

PurposeThe purpose of this paper is to illustrate the possible basis of challenging behaviour (CB) can lie in a treatable neurodevelopmental disorder.Design/methodology/approachTwo case studies were used to illustrate the clinical characteristics of attention deficit hyperactivity disorder (ADHD) presenting as CB in people with intellectual disability (ID).FindingsThe findings of this paper show that the appropriate use of drug therapy for ADHD effectively reduced the behavioural challenges.Research limitations/implicationsLimited by two cases. Application of the findings of this paper is limited given it is a case study. This paper highlights an important clinical implications which need to be studied in a larger scale to make clinical recommendations.Practical implicationsFindings from the two case studies may be used when making decisions in clinical practice.Originality/valueThe paper explores the possibility of ADHD presenting as CB in people with ID.

Influence of the organizational environment on challenging behaviour in people with intellectual disabilities: Professionals' views.

BackgroundWe examined the influence of the organizational environment on challenging behaviour in people with intellectual disabilities to increase understanding of the quality of support services for people with intellectual disabilities.MethodTwenty‐one professionals and managers from four specialized Dutch disability service organizations were interviewed. Data were analysed with a grounded theory approach, using Bronfenbrenner's ecological theory as a sensitizing frame.ResultsThe organizational environment (i.e., vision, values, sufficient resources) is related via the support service (i.e., providing stability, constant awareness) to residents’ challenging behaviour and is also linked directly to challenging behaviour (e.g., living environment, values). Organizations are restricted by national regulations, negative media attention and changing societal values, which negatively influence quality of support.ConclusionsThe creation of a supportive organizational environment for staff, who in turn can provide quality support services to residents with demanding care needs, was found to prevent challenging behaviour in people with intellectual disabilities.

Risk factors and topographies for self-injurious behaviour in a sample of adults with intellectual developmental disorders.

Self-injurious behaviour (SIB) is a prevalent form of challenging behaviour in people with intellectual developmental disorders (IDD). Existing research has yielded conflicting findings concerning the major risk factors involved, and in addition, SIB shows multiple topographies and presentations. Although presence of autism spectrum disorders (ASD) and severity of intellectual disability (ID) are known risk factors for SIB, there are no studies comparing SIB topographies by severity degrees of ID and ASD. The purpose of the present paper has been to identify risk factors and topographies for SIB in a representative, stratified and randomised sample of adults with IDD. This study was conducted on the basis of data collected by the POMONA-ESP project, in a sample of 833 adults with IDD. Data concerning demographic and health information, ASD symptoms, psychopathology and ID, have been analysed to determine the presence of risk factors for SIB among participants and to explore the occurrence and topographies of SIB across different severity levels of ID and ASD symptoms. Self-injurious behaviour prevalence in the sample was 16.2%. Younger age, oral pain, greater severity of ID, presence of dual diagnosis, psychiatric medication intake and higher scores on Childhood Autism Rating Scale were risk factors for SIB among participants, whereas number of areas with functioning limitations, place of residence, diagnosis of epilepsy and sex were not. SIB was more frequent in participants with ASD symptoms regardless of its severity level, and they displayed a higher number of different topographies of SIB. People with profound ID without co-morbid ASD symptoms showed similar results concerning SIB prevalence and topographies. Knowledge on risk factors and topographies of SIB might play a vital role in the development of prevention strategies and management of SIB in people with IDD. The mere presence of ASD symptoms, regardless of its severity level, can be a crucial factor to be taken into account in assessing SIB. Accordingly, the presence of SIB in people with ID, especially when presented with a varied number of topographies, might provide guidance on ASD differential diagnosis.

Findings from an online survey of family carer experience of the management of challenging behaviour in people with intellectual disabilities, with a focus on the use of psychotropic medication

Accessible summary Family members often support people with intellectual disabilities who display challenging behaviour. Family carers should be listened to and included in important decisions. We asked family carers how professional services had helped their relative with challenging behaviour. Family carers said that the care of people with intellectual disabilities who display challenging behaviour can be improved. Family carers sometimes felt left out of decisions and said that they needed more information. Listening to parent carers' experiences can help to improve the services that are provided to people with intellectual disabilities and their families. AbstractBackgroundThere is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication.Materials and methodsAn online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments.FindingsNinety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed.ConclusionsPsychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice.