• Attachment and learning disability: A theoretical review informing three clinical interventions

      Clegg, Jennifer (1995)
      Attachment theory makes sense of 2 phenomena observed in some people with learning disabilities: it provides a reason for their limited exploration of the world and it explains discontinuities in the pattern and intensity of their expressions of anger. Applying this framework to 3 enmeshed relationships occurring between an adult with learning disabilities and a member of care staff achieved at least partial resolution of their problems. All of the interventions yielded significant client change in 3 areas: reduction in anger and distress; increased exploration of physical and intellectual environments; and an increase in the range of people to whom the client relates. The following sequence of priorities for intervention are proposed for guidance: working with ambivalent carers, building a secure base, and enabling emotional development within the setting. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
    • Audit of the use of psychotropic medication for challenging behaviour in a community learning disability service

      Marshall, Tom (2004)
      Aims and method. The aims of the study were to identify patients in a community learning disability service receiving psychotropic medication for challenging behaviour, to examine prescribing practice and to compare this against local consensus standards. Local consensus standards were agreed by the consultants and the notes were reviewed by the author. Results. A total of 102 patients were identified as receiving psychotropic medication for challenging behaviour (26.7% of notes examined). The most common additional diagnoses were autism (29%) and epilepsy (28%). The average duration of treatment was 5.3 years, and multiple drugs more used in 34% of these patients. Antipsychotics were the most commonly used drugs (96% of patients). There was rarely a detailed description of the challenging behaviour. There was little regular monitoring of side-effects or warning about potential side-effects when the medication was started. Clinical implications. Challenging behaviour is a common cause of multiple prescribing in learning disability patients, and is often long-term in the absence of a strong evidence base. Other specialties use medication to control disturbed behaviour, particularly in people with dementia or personality disorder, so this audit may also be of interest to old age, adult and forensic psychiatrists.
    • Challenging behaviour and insecure attachment

      Clegg, Jennifer (2002)
      The present authors previously investigated a database about people with severe intellectual disability (ID) to explore whether secure/insecure attachment plays a role in challenging behaviour. This study took the form of a survey of staff and carers involved with a cohort of 54 school-leavers with severe ID. 34% percent of students were rated by placement staff as "overinvesting in one or a few relationships which become a source of jealousy". Students without such problems were significantly less likely to show challenging behaviours, while those with them were significantly more likely to be living outside the family home. These preliminary results justify more detailed and longitudinal research into the relationship between attachment status and challenging behaviour. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
    • Clinical and cost effectiveness of staff training in the delivery of Positive Behaviour Support (PBS) for adults with intellectual disabilities, autism spectrum disorder and challenging behaviour - randomised trial

      Bosco, Alessandro (2020)
      BACKGROUND: Although Positive Behaviour Support (PBS) is a widely used intervention for ameliorating challenging behaviour (CB), evidence for its use in adults with intellectual disability (ID) and comorbid autism (ASD) is lacking. We report a planned subsidiary analysis of adults with both ASD and ID who participated in a randomised trial of PBS delivered by health professionals. METHODS: The study was a multicentre, cluster randomised trial conducted in 23 community ID services in England, participants were randomly allocated to either the delivery of PBS (n = 11 clusters) or to treatment as usual (TAU; n = 12). One-hundred and thirteen participants (46% of all participants in the trial) had a diagnosis of ID, autism spectrum disorder and CB (ASD+); (47 allocated to the intervention arm, and 66 to the control). CB (primary outcome) was measured with the Aberrant Behaviour Checklist total score (ABC-CT). Secondary outcomes included mental health status, psychotropic medication use, health and social care costs and quality adjusted life years (QALYs) over 12 months. RESULTS: There were no statistically significant differences in ABC-CT between ASD+ groups randomised to the two arms over 12 months (adjusted mean difference = - 2.10, 95% CI: - 11.3 7.13, p = 0.655) or other measures. The mean incremental cost of the intervention per participant was pound628 (95% CI - pound1004 to pound2013). There was a difference of 0.039 (95% CI - 0.028 to 0.103) for QALYs and a cost per QALY gained of pound16,080. CONCLUSIONS: Results suggest lack of clinical effectiveness for PBS delivered by specialist ID clinical teams. Further evidence is needed from larger trials, and development of improved interventions. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01680276.
    • Community services and people with intellectual disabilities who engage in anti-social or offending behaviour: Referral rates, characteristics, and care pathways

      Johnston, Susan J. (2009)
      Provision of health and social support to people who engage in anti-social or offending behaviour and have intellectual disabilities (ID) remains a challenge to services. Numerous population studies have produced contradictory findings with reviews calling for the development of more fruitful approaches and recommending investigation of the care pathways operating within ID services. This study reports on the pathways through services encountered by adults with offending or anti-social behaviour referred to 15 UK community ID services in 2002. Pathways through services were tracked for 24 months post referral. Referral rates, demographic characteristics, and associations with anti-social or offending behaviour were statistically analysed for 237 cases. Most referrals originated from the local community (66%); a high proportion were female (40.5%). Community services appeared encapsulated, serving adults with offending behaviour over the long term, but predominantly (74%) those already known to local ID services. Implications for services and future research strategies are considered.
    • Discovery awareness for staff supporting individuals with intellectual disabilities and challenging behaviour: is it helpful and does it increase self-efficacy?

      Tickle, Anna C. (2019)
      Discovery awareness (DA) is an approach to using video within structured meetings to help staff become more mindful, aware and interested in a client they are supporting who has intellectual disabilities and challenging behaviour. The objective was to evaluate whether, and how, DA is helpful for staff in both inpatient and community settings, and whether it increases self-efficacy in working with people with challenging behaviour. A two-phase mixed method design was employed. For phase 1, forty staff who took part in one of seven single DA meetings completed the Challenging Behaviour Self-Efficacy Scale pre- and post-DA. In addition, post-DA, participants completed an Adapted Helpful Aspects of Therapy Scale (AHAT). For phase 2, six participants completed a follow-up Change Interview; 3–12 weeks after DA. Descriptive statistics reveal participants found events in the DA ‘greatly helpful’. The changes identified varied in whether they were expected or not, but were unlikely to occur without DA and ‘very important’. Statistical analysis showed no significant changes in self-efficacy following the DA. A thematic analysis on the qualitative data generated by the change interviews and AHAT identified three main themes: Impact on interaction; DA is unique and valuable; and the power of the process. The latter had three subthemes: a structure to facilitate change, making use of the content and reflective space to promote learning. Attendance at a single DA meeting does not increase staff perceptions of self-efficacy, however, staff find the process of DA helpful as it encourages reflection on their interactions with individuals with intellectual disability and challenging behaviour and attuning of their interactions, though further research is needed. © 2019, © The British Society of Developmental Disabilities 2019.
    • Epistemology and learning disabilities: Invited commentary on Hastings and Remington

      Clegg, Jennifer (1994)
      The effect on service provision of describing a variety of actions as challenging behaviour is discussed: it is suggested that studying stereotyped, aggressive and self-injurious acts in their own right has yielded more useful psychological debate, and ignoring such conceptual thinking leads to implicit theorizing where assumptions go unquestioned. Evidence for the relevance of staff actions on different topographies of client responses is critically reviewed, alongside discussion of the authors' rhetoric. The importance of adjusting language and frameworks to make room for alternative conceptualizations is discussed. The article concludes by recommending that research into staff attitudes and actions will be better served by reflexive methods and reporting which emphasize mutuality.
    • Muscle eye brain disease - A case report of cognitive and behavioural features

      Khalifa, Najat (2005)
      Presents a case report of a 27 year old man with muscle-eye-brain disease (MEB) and severe learning disability. MEB disease is a rare genetic disorder. It usually presents in the first 6 months of life with a combination of congenital muscular dystrophy, eye defects, and brain abnormalities. Although the main focus of the available literature is on the motor and visual impairment, change in the behaviour has been a main concern for the carers of this person with MEB. The case report presents details of the subject's motor development, eye manifestations, epilepsy, cognitive development, and behavior. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
    • Positive behaviour support training for staff for treating challenging behaviour in people with intellectual disabilities: A cluster RCT

      Bosco, Alessandro (2018)
      BACKGROUND: Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may help to reduce challenging behaviour among people with intellectual disability (ID). OBJECTIVE: To evaluate whether or not such training is clinically effective in reducing challenging behaviour in routine care. The study also included longer-term follow-up (approximately 36 months). DESIGN: A multicentre, single-blind, two-arm, parallel-cluster randomised controlled trial. The unit of randomisation was the community ID service using an independent web-based randomisation system and random permuted blocks on a 1 : 1 allocation stratified by a staff-to-patient ratio for each cluster. SETTING: Community ID services in England. PARTICIPANTS: Adults (aged > 18 years) across the range of ID with challenging behaviour [>/= 15 Aberrant Behaviour Checklist - Community total score (ABC-CT)]. INTERVENTIONS: Manual-assisted face-to-face PBS training to therapists and treatment as usual (TAU) compared with TAU only in the control arm. MAIN OUTCOME MEASURES: Carer-reported changes in challenging behaviour as measured by the ABC-CT over 12 months. Secondary outcomes included psychopathology, community participation, family and paid carer burden, family carer psychopathology, costs of care and quality-adjusted life-years (QALYs). Data on main outcome, service use and health-related quality of life were collected for the 36-month follow-up. RESULTS: A total of 246 participants were recruited from 23 teams, of whom 109 were in the intervention arm (11 teams) and 137 were in the control arm (12 teams). The difference in ABC-CT between the intervention and control arms [mean difference -2.14, 95% confidence interval (CI) -8.79 to 4.51; p = 0.528] was not statistically significant. No treatment effects were found for any of the secondary outcomes. The mean cost per participant in the intervention arm was pound1201. Over 12 months, there was a difference in QALYs of 0.076 in favour of the intervention (95% CI 0.011 to 0.140 QALYs) and a 60% chance that the intervention is cost-effective compared with TAU from a health and social care cost perspective at the threshold of pound20,000 per QALY gained. Twenty-nine participants experienced 45 serious adverse events (intervention arm, n = 19; control arm, n = 26). PBS plans were available for 33 participants. An independent assessment of the quality of these plans found that all were less than optimal. Forty-six qualitative interviews were conducted with service users, family carers, paid carers and service managers as part of the process evaluation. Service users reported that they had learned to manage difficult situations and had gained new skills, and carers reported a positive relationship with therapists. At 36 months' follow-up (n = 184), the mean ABC-CT difference between arms was not significant (-3.70, 95% CI -9.25 to 1.85; p = 0.191). The initial cost-effectiveness of the intervention dissipated over time. LIMITATIONS: The main limitations were low treatment fidelity and reach of the intervention. CONCLUSIONS: Findings from the main study and the naturalistic follow-up suggest that staff training in PBS as delivered in this study is insufficient to achieve significant clinical gains beyond TAU in community ID services. Although there is an indication that training in PBS is potentially cost-effective, this is not maintained in the longer term. There is increased scope to develop new approaches to challenging behaviour as well as optimising the delivery of PBS in routine clinical practice. TRIAL REGISTRATION: This study is registered as NCT01680276. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 15. See the NIHR Journals Library website for further project information.
    • A pragmatic mixed-methods review of changing "case-complexity" of referrals to an intensive support service

      Clifford, Adam; Kemp, Francesca G. (2020)
      Purpose "Case-complexity" is a widely used but under-explored concept across health and social care. A region's Intensive Support Teams (ISTs) had been reporting an increase in "case-complexity", but had not tested this hypothesis against data. This study aims to investigate this question through a pragmatic mixed-methods approach as part of a wider service evaluation. Design/methodology/approach Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) scores were used (n = 1,766) to estimate average "case-complexity" of referrals over an eight-year sample period. Two focus groups for IST staff (n = 18) explored why "case-complexity" appears to be increasing. Participant perspectives were subjected to thematic analysis. Findings Average HoNOS-LD scores have steadily increased over the sample period, suggestive of increasing "case-complexity". Focus groups identified three broad themes to potentially explain the increased complexity: effects of Transforming Care; people's changing and unchanging support systems; and issues related to mild and borderline intellectual disability. Many perspectives are grounded in or supported by evidence. Research limitations/implications Implications and limitations of findings are discussed, including areas for further consideration and research. The well-designed "short-cut" is promoted as a strategy for busy professionals in need of practice-based evidence but with limited research time and resources. Originality/value The findings and discussion will be of value to anyone involved in the design, commissioning and delivery of mental health and challenging behaviour services to people with intellectual and developmental disabilities (IDD) under Transforming Care. Study methodology is easily replicable to build broader picture about "case-complexity" among UK's IDD population.
    • Process evaluation of a randomised controlled trial of PBS-based staff training for challenging behaviour in adults with intellectual disability

      Bosco, Alessandro (2019)
      BACKGROUND: Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. Process evaluation is pivotal in fully understanding the mechanisms and contextual factors that impact on participant outcomes. AIMS: To conduct a process evaluation of a national clinical trial investigating the impact of PBS-based staff training on the level of challenging behaviour in adults with intellectual disability. METHOD: The Medical Research Council guidance for process evaluation of complex interventions was followed. Semi-structured interviews with 62 stakeholders from the intervention arm (service users, family and paid carers, service managers, staff who delivered the intervention and PBS trainers), quantitative data from the study database and an external evaluation of the quality of the PBS plans were used. RESULTS: Twenty-one health staff volunteered to be trained in delivering PBS. Available log data from 17 therapists revealed that they worked with 63 participants a median of 11.50 hours (IQR 8-32). Only 33 out of 108 reports had included all elements of the intervention. Another 47 reports had some elements of the intervention. All PBS plans were rated weak, indicating insufficient quality to impact challenging behaviour. Stakeholders reported an appreciation of PBS and its potential to impact quality of care and engagement with the participant. However, they also identified important challenges including managing PBS-related caseloads, paid carer turnover and service commitment to the delivery of PBS. CONCLUSIONS: PBS-based staff training was well received, but therapists found it difficult to undertake all the elements of the intervention in routine care. Implementing a workforce training strategy is important to better define the active components of PBS, and resource implications if the intervention is no better than usual care.
    • What is 'special' about national health service residences for people with learning disabilities? An audit of residential needs

      Nesbitt, Sophie; Collins, Graham (1998)
      The results of this audit showed that the NHS residents tended to be more able, in terms of level of learning disabilities, however required greater help in managing challenging behaviour and mental health problems; whereas residents living in Partnership Housing Schemes tended to be less able in terms of learning disability, and they appeared to display less challenging behaviour. This study has gone a long way in trying to determine differences between the NHS and partnership scheme service provision. There are important differences, which are fundamental in definition in order to pay full consideration to which service provision benefits which service users most adequately. The establishment of these differences will assist in trying to determine the exact role and function of these units in comparison within the NHS service provision.