Severe Challenging Behaviour Research Articles

Well-being, multidisciplinary work and a skillful team: essential elements of successful treatment in severe challenging behavior in dementia

Objective Conceptualize successful treatment of persons with dementia and severe challenging behavior as perceived by professionals. Methods In this concept mapping study 82 experts in dementia care participated. The study followed two phases of data collection: (1) an online brainstorm where participants completed the focus prompt: ‘I consider the treatment of people with severe challenging behavior in dementia successful if.’; (2) individual sorting and rating of the collected statements followed by data analysis using multidimensional scaling and hierarchical cluster analysis, resulting in a concept map. Results Three clusters were identified, the first addressing treatment outcomes and the latter two addressing treatment processes, each divided into sub-clusters: (1) well-being, comprising well-being of the person with dementia and all people directly involved; (2) multidisciplinary analysis and treatment, comprising multidisciplinary analysis, process conditions, reduction in psychotropic drugs, and person-centered treatment; and (3) attitudes and skills of those involved, comprising consistent approach by the team, understanding behavior, knowing how to respond to behavior, and open attitudes. Conclusions Successful treatment in people with dementia and severe challenging behavior focuses on well-being of all people involved wherein attention to treatment processes including process conditions is essential to achieve this.

Using Telehealth to Program Generalization of Caregiver Behavior.

Stokes and Baer,Journal of Applied Behavior Analysis, 10(2), 349-367 (1977) provided guidelines to assist practitioners with programming for the generalization of behavior change. Despite the suggestions provided in their seminal paper, generalization remains an often overlooked area within behavior analytic research and practice. In addition, few studies have described explicit strategies to program for the generalization of caregiver behaviors that are consistent with interventions to reduce child challenging behavior. In the current discussion, we describe how telehealth provides a potential avenue for practitioners to focus on generalization. Telehealth helps practitioners access behavior-change agents, materials, and contexts that they may not directly contact in educational and clinical environments. Using telehealth to target these areas early on, and throughout treatment for child challenging behavior, may facilitate more rapid treatment success and maintenance. We provide a case example to demonstrate the use of telehealth to program the generalization of a mother's treatment plan implementation to reduce the severe challenging behavior of an adolescent. We report clinically and socially significant outcomes related to caregiver fidelity and challenging behavior reduction.

Setting up a new team of support staff for people with mild intellectual disability or borderline intellectual functioning and severe challenging behaviour: A concept mapping study.

Studies about teams of staff supporting people with intellectual disability have focused on team performance of existing teams. This study aimed to examine important factors in the process of setting up a new team of support staff. Specifically, we considered the process for a team that supports service users with mild intellectual disability or borderline intellectual functioning who display severe challenging behaviour from the orthopedagogical perspective (i.e., with a focus on contextual factors). Three participant groups (service users, support staff, and professionals supporting a team) participated in a concept mapping procedure, including generating statements in interviews and focus groups, sorting, and rating. An expert group interpreted the results. Important factors to one or more groups were: service users and support staff getting acquainted early, team safety, social support, a shared vision, and a positive reputation of the new home. Four core outcomes were addressed that may help service organisations to provide an environment matching the needs of service users who show severe challenging behaviour from the start.

Developmental trajectories of challenging behaviors reported retrospectively by Japanese parents of adult children with intellectual disabilities

Introduction: Individuals with intellectual disabilities (ID) are at heightened risk of behavioral problems. Methods: This study investigated differences in the severity of challenging behaviors (CBs) among individuals with IDs at varying life stages. Data were collected from parents’ retrospective interviews. Surveys were completed by 47 parents whose child with IDs was 19 years or older and had made use of welfare services for individuals who exhibit CBs. Results: The final study sample consisted of 28 parents. Findings showed that (a) parents gave the lowest total scores for severity of CBs for their adult children when at the pre-school stage compared to other stages (elementary school, junior high school, high school, and post-high school), (b) differences between life stages appear to depend on the type of CB, and (c) the most common CB recorded for children between 0 and 2 years old was extreme hyperactivity, followed by severe sleep disturbances. Conclusions: The results of the study show that domain ratings for stereotypic/restricted behaviors, sleep disturbance problems, feeding problems, and problems with elimination often remain stable throughout the life stages. Moreover, parents frequently reported that CBs often occurred in children aged 0–2 years.

Piloting a Decision Tool to Guide Individualized Hypothesis Testing for Students with Severe and Complex Challenging Behavior

Piloting a Decision Tool to Guide Individualized Hypothesis Testing for Students with Severe and Complex Challenging Behavior

Mental Health Challenges, Parenting Stress, and Features of the Couple Relationship in Parents of Children With Fragile X Syndrome

BackgroundIndividuals with fragile X syndrome (FXS) have significant delays in cognition and language, as well as anxiety, symptoms of autism spectrum disorder, and challenging behaviors such as hyperactivity and aggression. Biological mothers of children with FXS, who are themselves FMR1 premutation or full mutation carriers, are at elevated risk for mental health challenges in addition to experiencing stress associated with parenting a child with significant disabilities. However, little is known about fathers in these families, including the ways in which parental well-being influences the mother-father relationship and the impact of child characteristics on paternal and couple functioning.MethodThe current study examined features of, and relationships between, parental well-being, couple well-being, and child functioning in 23 families of young boys with FXS. Mothers and fathers independently completed multiple questionnaires about their individual well-being, couple functioning, and child behavior. One parent per family also completed an interview about the child’s adaptive skills.ResultsResults suggest that both mothers and fathers in these families experience clinically significant levels of mental health challenges and elevated rates of parenting stress relative to the general population. Findings also indicate that the couples’ relationship may be a source of strength that potentially buffers against some of the daily stressors faced by these families. Additionally, parents who reported less parenting stress had higher couples satisfaction and dyadic coping. Finally, parents of children with less severe challenging behaviors exhibited fewer mental health challenges, less parenting stress, and higher levels of both couples satisfaction and dyadic coping. Parents of children with higher levels of adaptive behavior also reported less parenting stress and higher couples satisfaction.ConclusionOverall, this study provides evidence that families of children with FXS need access to services that not only target improvements in the child’s functioning, but also ameliorate parental stress. Family-based services that include both mothers and fathers would lead to better outcomes for all family members.

Intellectual Disability, Autism Spectrum Disorders, Psychiatric Comorbidities and Their Relationship with Challenging Behavior

ABSTRACT Background The purpose of this study was to assess the prevalence of unknown comorbid mental disorders in individuals with mild/moderate intellectual disability (ID) with/without autism spectrum disorders (ASD) and to compare the severity of challenging behavior with respect to the comorbidity of ASD and comorbid psychiatric disorders. Methods This is a cross-sectional study of 91 adults with mild or moderate ID with no previous psychiatric diagnosis (except ASD). The assessment tools were the PAS-ADD checklist, Mini-PAS-ADD, PAS-ADD clinical interview and the Inventory for Client and Agency Planning (ICAP). Results A previously undiagnosed mental disorder was found in 23.81% of the individuals with ID and ASD and in 10.20% of the individuals without. The most prevalent mental disorder was major depressive disorder. An association between psychiatric comorbidity and challenging behavior was found in people with ID and ASD. Conclusions The prevalence of underdiagnosed mental disorders in individuals with ASD and ID is high and is associated with challenging behavior.

423 - Characteristics of specialized units for people with dementia and very severe challenging behavior in the Netherlands: a mixed method study

Introduction:Little is known about the raising number of specialized units for patients with dementia and very severe challenging behavior in the Netherlands. This study describes organizational and treatment characteristics of a sample of these units.Methods:The organizational and treatment characteristics were studied with digital questionnaires completed by the unit managers, interviews with the main physician(s) and observation of the physical environment. The questionnaire consisted of questions about general patient characteristics, unit characteristics and staff characteristics. Furthermore, an interview was held with the main/treating physician often together with another physician or psychologist. The interview guide consisted of questions about admission criteria, the role of staff involved and the treatment process.Results:Thirteen units participated. Five units were part of a mental health (MH) institution, seven units were part of a nursing home (NH) organization and one unit was a cooperation of MH and NH. Unit sizes ranged from 10 to 28 places. Ten of thirteen units started in 2010 or later. The age of patients admitted was estimated at 75 years. The percentage of involuntary admitted patients was 53% at MH-units and 18% at NH-units. Unit managers mentioned that due to a difference in reimbursement between MH and NH units had difficulty providing the specialized care. Another problem managers faced was recruiting nursing staff. Units strived for expertise in general staffing from both MH and NH. The education level of the nursing staff was comparable between MH and NH. At every unit a physician with background in elderly care medicine or geriatrics and a psychiatrist was involved. Interviewees stressed the role of the nursing staff in the treatment. They were key in providing the care and treatment that, since the main goal of interventions is treatment of and coping with challenging behavior.Conclusion:The main finding of this study is that units caring for patients with dementia and challenging behavior, despite barriers in regulations and staffing shortage, search for combining expertise from nursing home care and psychiatry in their treatment.

Treatment Acceptability for Interventions Addressing Challenging Behavior Among Chinese Caregivers of Children with Autism Spectrum Disorder.

The present study evaluated treatment acceptability for behavioral interventions addressing challenging behaviors with Chinese caregivers of children with autism spectrum disorder. Factors influencing treatment acceptability (i.e., severity of challenging behavior and Chinese child-rearing values) were investigated. Caregivers of children aged 2-12years (N = 216) participated in this survey study. Results suggest that caregivers found positive strategies including noncontingent reinforcement and positive reinforcement the most acceptable; punishment-based strategies were rated as the least acceptable. Furthermore, positive punishment was perceived as more acceptable for severe challenging behavior. Caregivers who endorsed training were more likely to find positive strategies acceptable, whereas those who endorsed shaming were more likely to rate punishment-based strategies as more acceptable. Implications for future research and culturally competent behavioral treatments in Chinese context are provided.

A survey of the use of seclusion and physical restraint at school and at home for children under the care of the NHS Lanarkshire CAMHS – learning disability team

AimsTo attempt to quantify the use of seclusion and restraint for young people managed by the NHS Lanarkshire CAMHS Learning Disability team.BackgroundThere has been increasing interest in the use of seclusion and restraint in children with learning disabilities, reflected by various news reports in the UK and USA. A survey of parents conducted by the Challenging Behaviour Foundation (2019) found that 35% of disabled children (n = 204) had been regularly physically restrained and a further 21% had been regularly secluded. The use of restrictive practice in children is contradictory to the UN Convention on the Rights of the Child as well as the conclusion of a recent report conducted by the Scottish Children's Commissioner titled “No Safe Place” which called on schools to stop using restraint and seclusion until national guidelines and standards were in place. No data were submitted to the Children's Commissioner from Lanarkshire. Anecdotally there was an impression in the team that restrictive practices were widely used at school and home.MethodThe NHS Lanarkshire CAMHS-LD team is a small team caring for children aged 5–18 years with moderate to severe/profound learning disability with mental disorder and/or severe challenging behaviour. The methodology for this retrospective audit relied on reviewing patient case notes and speaking with involved clinicians. We discussed each individual patient on their respective caseload as to whether the child had been restrained or secluded at home or at school.ResultAll 108 children from the caseload were included in the audit of whom 52.8% had been either restrained or secluded. 24.1% of children were both restrained and secluded at school, while 15.8% were restrained and secluded at home. These patients were complex. 86.1% had Autistic Spectrum Disorder and 55.6% had another comorbidity, such as ADHD.ConclusionThe figures are broadly similar to those in the Challenging Behaviour Foundation report. The team knew all of the individual patients very well and review them across a variety of settings such as school and home with instances of seclusion and restraint being directly witnessed by clinicians. Nevertheless, there is the issue of recall bias. These findings will be shared with NHS Lanarkshire management for further discussion and dissemination. .

Supporting Families with Children Who Display Severe Challenging Behavior

Over the past several decades, we have developed quality behavioral assessments and interventions for challenging behaviors among individuals with a variety of severe developmental and cognitive disorders. These assessments and interventions have been used to educate family members on how to understand and intervene with these behaviors at home and in community settings. However, it has become clear that many families are not able to carry out these procedures adequately. This case describes recent work that is designed to support families so that they can assist their challenging children. Fortunately, we have been able to demonstrate a way of looking at parental difficulties and have designed interventions for families so that they are better able to implement successful behavioral assessments and interventions. We will describe a concession process that can help explain these parental obstacles and can aid with creating specific supports to assist families struggling with these difficulties. We also discuss future directions for follow-up research.

Multiple operant discrimination training to increase the precision of stimulus deltas following treatment of challenging behavior

AbstractExplicit instruction on how to maximize reinforcement in volatile reinforcement conditions could decrease the probability of persistent but ineffective requesting while also maintaining low rates of challenging behavior. We used a multiple probe design to demonstrate a functional relation between multiple‐operant discrimination training and manding for available reinforces from a child with autism spectrum disorder and complex communication needs who used a low‐tech augmentative and alternative communication system. Despite a history of severe challenging behavior, rates of challenging behavior remained low throughout this study.

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

AbstractIssuesThe International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self‐advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long‐term effectiveness of the procedure as an intervention for challenging behavior.FindingsThe review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long‐term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.ConclusionsAlthough research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self‐injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

The Safety and Effectiveness of High-Dose Propranolol as a Treatment for Challenging Behaviors in Individuals With Autism Spectrum Disorders.

Individuals with autism spectrum disorders present with social communication deficits and a rigid adherence to sameness. Along with these symptoms, many individuals also present with severe challenging behaviors that place themselves as well as their families and communities at risk for injury. For these individuals, new and effective treatments are acutely needed. Propranolol has been used worldwide for over 50 years. Its primary indication is for hypertension, but there is evidence that, at higher doses, propranolol inhibits rage and anger through its effects on the central nervous system. This effect has been demonstrated in a variety of neuropsychiatric disorders. Here, we present 46 retrospective analyses of clinical cases that were followed by a psychiatrist. Propranolol was prescribed as an add-on to the patients' existing medications. The doses ranged from 120 to 960 mg per day (mean = 462 mg). Thirty-nine (85%) of 46 patients were found to be much improved or very much improved on the physician-rated Clinical Global Impression Improvement scale. There were few side effects noted, with only 2 subjects unable to tolerate the propranolol. It appears that high-dose propranolol can be given safely with minimal adverse cardiovascular problems, provided that close clinical monitoring is maintained. A more rigorous clinical trial is needed to elucidate and verify its clinical utility, clinical practice parameters, and the effects of propranolol as a monotherapy versus as an add-on to the patient's existing medication regimen.

Can sensory integration have a role in multi‐element behavioural intervention? An evaluation of factors associated with the management of challenging behaviour in community adult learning disability services

Accessible summary Sensory integration is about how our brain receives and processes information so we can make sense of our everyday life. Behavioural interventions is a term used to describe how to teach people to increase useful behaviours or decrease behaviours that are challenging. Some people with severe learning disabilities can have behaviour that challenges and this can be difficult to manage. To manage behaviours that challenge restrictive interventions have been used such as people being given medication, or being held by others against their will. Instead of using these restrictive interventions we can use sensory strategies and a low stimulus environment which have been found to be successful in managing behaviours that challenge. AbstractIntroductionAdults with complex needs and severe learning disability present as a serious management problem within the community. Restrictive interventions are often used to manage adults with these issues, even though best practice recommends the use of positive behaviour support. Positive behaviour support involves functional analysis, but it does not specifically focus on sensory integration difficulties as a contributing factor to challenging behaviour.MethodsA systematic search of the literature was completed using a range of electronic databases, an electronic search, hand search and review of reference lists. Seven relevant studies were identified. These studies were critically appraised and analysed. However, the extent of research was limited and the procedural quality variable, some distinct themes, arose.ResultsOut of the seven intervention studies included in this review, two studies used sensory integration therapy, three employed multi‐element behavioural intervention, one utilised environmental stimulation within a multifactor behavioural intervention approach and one used sensory strategies within a structured behavioural intervention programme. The participants across the final seven papers reviewed consisted mainly of males with a high incidence of participants presenting with ASD. A range of assessment tools and outcome measures were used.ConclusionsThe use of restrictive intervention is still an issue in practice. Nearly all the studies reviewed stressed the issue of placing individuals with severe challenging behaviour in the community. Behavioural studies have successfully utilised sensory integration strategies within a structured behavioural format to manage challenging behaviour in a community setting for adults with a learning disability.

Consultation on the Functional Assessment of Students with Severe Challenging Behavior in a Japanese Special School for Intellectual Disabilities.

It is important to intervene early and treat children and individuals with behavioral disorders. We conducted a functional assessment-based consultation for teachers of several students with severe behavioral disorders and examined the effects of the consultation. Eight students with severe behavioral disorders were selected from two special schools for intellectual disabilities in western Japan. An external consultant team conducted a functional assessment-based consultation in cooperation with a team of teachers. Consultations were held once a month, and comprised three to six sessions per student. As a result of the functional assessment, only 8 out of 10 behaviors with some communication function, and 2 with only sensory enhancements were estimated. The Effects of consultations based on functional assessment were presented. It was found that 6 out of 10 target behaviors had obtained high effects. The total score for each behavioral scale showed a statistically significant improvement. Although consultations lasted for only six months and occurred from three to six times for each student, scale scores for problem behavior before and after intervention were improved, overall. Each case report suggested that many factors influence the difference in the effects of consultation among individual students. This study is significant in that it provides a model for the consultation system that operates on a short-term basis, and presents a means for small-scale group consultations for students with intellectual disabilities and autism in cooperation with external specialized institutions in special schools in Japan.

Parental experiences with behavioural problems in Smith-Magenis syndrome: The need for syndrome-specific competence.

The experience of having a rare disorder was summarised in a large study as ‘falling outside the vast field of knowledge of the professionals’. Parents (31 mothers and 17 fathers) of 32 persons with Smith–Magenis syndrome (SMS) participated in this study. A phenomenological approach was used to analyse the data into topics and themes. Four themes emerged: behavioural challenges displayed, parents’ strategies for meeting the challenging behaviours, parents’ experiences of their own competence and parents’ experiences of professionals’ competence and understanding regarding children with SMS and their behaviour challenges. We found that parents of children with SMS experience that they are exposed to severe challenging behaviours from their child. The parents believe that they experience more misunderstandings with professionals and that the challenging behaviours increase because there are some specific characteristics of SMS that professionals are not aware of or do not consider in their support services.

Attachment disorder in autism spectrum disorder and intellectual disability

PurposeAutism spectrum disorder (ASD) is an exclusion criterion for one of the two attachment disorders in the DSM 5. However, previous findings indicate that ASD and attachment disorder are unrelated conditions and may co-occur. The purpose of this paper is to explore the diagnostic assessment of an adolescent male with ASD, intellectual disability (ID), severe challenging behaviour and a suspected attachment disorder.Design/methodology/approachCase study methodology was chosen because of its suitability in the exploration of complex clinical phenomena where prior knowledge is sparse.FindingsIt was possible to identify symptoms of attachment disorder in a case involving ASD, ID, anxiety and severe challenging behaviour. The Disturbances of Attachment Interview was particularly useful in this assessment, as was assessment of ASD symptoms and developmental history. Differentiating the two attachment disorders proved challenging.Research limitations/implicationsThere is a need for further research in ASD and attachment disorders not limited by current diagnostic categories.Practical implicationsCo-occurring symptoms of attachment disorder may be identified in individuals with ASD and ID, and exploration of these symptoms in assessments of children and adolescents with ASD/ID and challenging behaviour may be beneficial.Originality/valueThe study adds to previous findings on attachment disorder in ASD, demonstrating that identification of attachment disorder is possible even in the presence of a highly complex clinical picture involving severe challenging behaviour. It may also assist other clinicians in identifying and making more accurate assessment of attachment disorder in ASD and ID.

Emotional development, aggression regulation and challenging behavior in individuals with intellectual disbility

Analysis of the causes of challenging behavior in individuals with intellectual disability (ID). The relatedness and the impact of cognitive and emotional functioning on challenging behavior was investigated by correlation and regression analyses in 262 individuals with ID and mental disorders / challenging behavior. Despite the high correlation between ID and emotional development, cognitive-emotional developmental discrepancies were found in every second patient. The severity of challenging behavior was associated with a lower level of emotional development, especially in the area of "aggression regulation". The level of emotional development should be ascertained in the context of an assessment of challenging behavior in individuals with ID.

Effects of Function-Based Crisis Intervention on the Severe Challenging Behavior of Students with Autism

Effects of Function-Based Crisis Intervention on the Severe Challenging Behavior of Students with Autism