Causes of and Alternatives to Medication for Behaviours That Challenge in People with Intellectual Disabilities: Direct Care Providers' Perspectives.

Behaviours that challenge (BtC), such as aggression and self-injury, are manifested by many people with intellectual disabilities (ID). National and international guidelines recommend non-pharmacological psychosocial intervention before considering medication to address BtC. Support staff play a pivotal role in the prescription process. Using coproduction, we developed a training programme for support staff, called SPECTROM, to give them knowledge and empower them to question inappropriate prescriptions and ask for the discontinuation of medication if appropriate and instead look for ways to help people with ID when they are distressed without relying on medication. We have presented data from two focus groups that we conducted during the development of SPECTROM: one that included support staff, and another that had service managers and trainers. In these focus groups, we explored participants' views on the use of medication to address BtC with a particular emphasis on the causes of and alternatives to medication for BtC. Along with the participants' views, we have also presented how we have addressed these issues in the SPECTROM resources.

Short-Term Psycho-Education for Caregivers to Reduce Overmedication of People with Intellectual Disabilities (SPECTROM): Development and Field Testing.

People with intellectual disabilities (PwID) are at a higher risk of developing challenging behaviours (CB). Despite the poor evidence for the effectiveness of medications in managing CB, they are used widely among PwID (50-63%). The aims of our study were to develop a training programme, SPECTROM for support staff to help reduce overmedication in PwID and carry out field testing of SPECTROM including a process evaluation. We developed SPECTROM using the Experience-based co-design method that included four focus groups and a one-day co-design event. Twenty trainees received SPECTROM training. We used the Management of Aggression and Violence Attitudes Scale-Revised-Intellectual Disabilities (MAVAS-R-ID) and the Psychotropic knowledge questionnaire. A semi-structured interview and a feasibility questionnaire were used for process evaluation. SPECTROM website contains 14 modules, resources, and face-to-face training. MAVAS-R-ID scores showed change in staff attitude to 'medication management' domain was statistically significant (p < 0.05). Psychotropic knowledge questionnaire showed statistically significant post-training improvement in correct responses (p < 0.05). Process evaluation data showed that SPECTROM was acceptable, applicable, practical, and relevant to staff practice, and helped to improve self-reflection, knowledge, and support to PwID. SPECTROM is a useful training that helps to change the support staff's attitude toward CB and improve their knowledge of psychotropic medications.

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.

Eye movement desensitization and reprocessing for adults with intellectual disabilities: Process issues from an acceptability study.

BACKGROUND: Eye movement desensitization and reprocessing (EMDR) is recommended for post-traumatic stress disorder and emerging evidence indicates that it is effective for people with intellectual disabilities. However, acceptability from the perspectives of clients with intellectual disabilities, their therapists and other key people has not been formally evaluated. This study investigates process issues in the implementation of EMDR from perspectives of multiple stakeholders. METHOD: Semi-structured interviews were conducted with two adults with intellectual disabilities and three clinical psychologists who had participated in EMDR as well as a key supporter (N = 6) to provide information relating to three cases. The interviews were analysed thematically either directly from the audio recording or from transcripts. RESULTS: Five themes were identified: EMDR feels very different; EMDR is a technical process; the need to work with the present; talking is important; cautious optimism. CONCLUSIONS: Whilst a range of client- and therapist-related factors served as barriers to using EMDR in this small-scale study, such as preferences in working with the present and inexperienced therapists, there was cautious optimism that EMDR may be useful for "the right person at the right time.".

Cultural affordance, social relationships, and narratives of independence: Understanding the meaning of social care for adults with intellectual disabilities from minority ethnic groups in the UK.

Objectives: To explore the perspective of adults with intellectual disabilities from minority ethnic groups, on their relationship with social care services. Methods: Thirty-two adults took part in semi-structured interviews. Transcripts were analyzed within a Pluralist framework, adopting the structure of Template Analysis and then drawing on phenomenological, narrative, and discursive approaches. Results: Our participants were generally positive about the services which they received, which they evaluated primarily in terms of their continuing good relationship(s) with specific workers. Our respondents were sophisticated users of cultural resources and identities; the concept of 'cultural affordance' may be useful alternative to 'cultural competence'. We discuss three distinctive narratives about independence (Stability; Progress; Resistance). Each highlights the importance of maintaining connectedness to others, and the crucial role played by ownership of decision-making. Conclusions: We have developed a set of resources which service providers (and researchers) can use with people with intellectual disabilities, in order to support mutual understanding, service planning and delivery.

The complex role of social care services in supporting the development of sustainable identities: Insights from the experiences of British South Asian women with intellectual disabilities.

BACKGROUND AND AIMS: Carers and service users with intellectual disabilities from minority ethnic groups have typically been reported to be dissatisfied with the social care services they receive. However, service users themselves have rarely been asked directly about their experiences of social care. This paper aims to understand the meaning of social care services in the lives of South Asian women with intellectual disabilities, in the United Kingdom. METHOD AND PROCEDURE: 10 British South Asian women with mild-moderate intellectual disabilities were interviewed about their experiences of social care services. The transcripts were analysed using interpretative phenomenological analysis. RESULTS: The analysis produced three super-ordinate themes, which focus on how services facilitate the development of complex identities, how the participants explored their sense of being 'stuck' between cultures as they negotiated their journeys towards independence, and the triple disadvantage which they experienced as a consequence of the intersection between gender, ethnicity and disability. The participants were broadly satisfied with the role which services played in these domains, and appeared to find them valuable and helpful. CONCLUSIONS: The results suggest that the participants successfully managed complex identity issues, such as acculturation processes, with the support of services. It may be helpful to give more explicit consideration to the positive role which good services can play in supporting people with intellectual disabilities in the development of their identities and goals, alongside the more traditionally 'concrete' objectives of such social care. Engagement with families in 'positive risk-taking' is likely to be an important component of success.

The Experiences of Fathers Who Have Offspring with Autism Spectrum Disorder.

Research exploring parents' experiences of having offspring with autism spectrum disorder (ASD) currently underrepresents fathers. This study aimed to develop an understanding of the experience of fathers, with a view to facilitating improved support. Eight fathers participated in semi-structured interviews exploring their experiences of fathering children with ASD. Fathers described their experiences as a path towards acceptance, with independence and integration for their offspring being key goals. Fathers saw themselves as advocates fighting obstructive services to access appropriate care. The value placed on formal and informal support varied, although the need for personalised support was emphasised. Enabling fathers to see their experiences as a journey, whilst engaging them on the important topics of independence and integration, may improve their experience.

An Exploration of Costs of Community-Based Specialist Health Service Provision for the Management of Aggressive Behaviour in Adults with Intellectual Disabilities.

BACKGROUND: In the UK, people with intellectual disabilities who exhibit aggressive behaviour often receive community-based specialist health services from a community learning disability team (CLDT). Our aim was to estimate costs associated with this provision and to identify predictors of higher costs. METHOD: Costs were estimated for 60 adults with intellectual disabilities and aggressive behaviour who attended specialist psychiatric outpatient clinics in the West Midlands region of the UK, including contact time with members of the CLDT and use of psychotropic medication over a 12-month period. RESULTS: Mean total cost of 12-month service provision was £418 (95% confidence interval [CI] £299-557). Mean total cost of 12-month psychotropic medication was £369 (95% CI £256-492). Amongst individual members of the CLDT, mean costs were highest for psychiatrists (£181) and relatively lower for community nurses (£70) and clinical psychologists (£30), and lowest for physiotherapists (£13). Male sex, presence of expressive verbal communication and presence of epilepsy were independently associated with 12-month medication and service use costs, accounting for 23% of the variance in cost. CONCLUSIONS: It seems that in terms of costs, there is an overreliance on medication and psychiatrists and a relatively lesser reliance on other CLDT members such as community nurses and clinical psychologists for the management of aggressive behaviour in adults with intellectual disabilities within community settings. Health commissioners may wish to explore this relative cost discrepancy further and try to redress the balance where appropriate.

Effectiveness of cognitive behavioural therapy (CBT) programmes for anxiety or depression in adults with intellectual disabilities: A review of the literature.

Relatively little is known about the application of cognitive behavioural therapy (CBT) to people with intellectual disabilities (ID). This review sought to synthesise available evidence on the effectiveness of CBT for anxiety or depression to assess the current level of evidence and make recommendations for future research. A comprehensive systematic literature search was conducted to identify qualitative and quantitative studies. Robust criteria were applied to select papers that were relevant to the review. Included papers were subject to quality appraisal. Eleven out of the 223 studies considered met our inclusion criteria and were included in the review in which CBT was used with participants with ID and anxiety (n=3), depression (n=4) or a mixed clinical presentation (n=4). There remains a paucity of evidence of effectiveness, however, the studies indicate that CBT is feasible and well-tolerated and may be effective in reducing symptoms of depression among adults with mild ID. Qualitative data reflect a positive perception of CBT amongst clients and carers. Further research is required to investigate the components of CBT, suitability for CBT, and requisite skills for CBT, which uses valid, sensitive and more holistic outcome measures.

Developing resources to facilitate culturally-sensitive service planning and delivery - doing research inclusively with people with learning disabilities.

PLAIN ENGLISH SUMMARY: (Please see www.Toolsfortalking.co.uk for an easy read summary of the project.) The Tools for Talking are a set of resources that were developed through collaboration between Black, Asian and minority ethnic people with learning disabilities and researchers at the University of Birmingham. The resources were designed to be used by people with learning disabilities and service providers to facilitate culturally-sensitive communication and information sharing, service planning and delivery. They comprise illustrative videos and exploratory activities relating to five topics, namely, culture, activities, support from staff, important people, choices and independence. These topics emerged as important to people with learning disabilities during the 'Access to Social Care-Learning Disabilities' (ASC-LD) study which involved interviews with 32 adults with learning disabilities from Black, Asian and minority ethnic communities. The results of the ASC-LD study were used to develop a set of draft resources which were then co-developed through collaboration with people with learning disabilities and service providers. A 'Partnership event' was convened to involve stakeholders in the development of the resources. This paper describes the refinement of these materials by people with learning disabilities from Black, Asian and minority ethnic backgrounds in cooperation with a range of other stakeholders. ABSTRACT: Background Black, Asian and minority ethnic people with learning disabilities face inequities in health and social care provision. Lower levels of service uptake and satisfaction with services have been reported, however, this is largely based on the views of carers. The 'Access to Social Care: Learning Disabilities (ASC-LD)' study sought to explore the views and experiences of social support services among adults with learning disabilities from Black, Asian and minority ethnic communities. Interviews with 32 Black, Asian and minority ethnic adults with learning disabilities were conducted to explore participants' cultural identities, their understanding and experience of 'support'. The views and experiences expressed in the ASC-LD study were used in the 'Tools for Talking project' to develop a suite of resources designed to facilitate culturally-sensitive communication and information-sharing, service planning and delivery through improved mutual understanding between providers and users of services. This paper describes the Tools for Talking project which sought to co-develop the resources through a partnership event. Methods An inclusive approach was adopted to address issues that are important to people with learning disabilities, to represent their views and experiences, and to involve Black, Asian and minority ethnic people with learning disabilities in the research process. Partnerships were developed with provider organisations and service users who were invited to a 'Partnership Event'. Collaborators at the partnership event were asked to comment on and evaluate draft resources which included a series of videos and activities to explore topics that emerged as important in the ASC-LD study. Their comments were collated and the tools developed as they suggested. Results Using the results from the ASC-LD study helped to ensure that the draft resources were relevant to service users, addressing topics that were important to them. The partnership event was an effective method to collaborate with a relatively large number of stakeholders. However, the event was resource intensive and required substantial planning to ensure active and meaningful participation. Considerations, such as inviting stakeholders, developing the programme and selecting a venue are discussed. Conclusions The partnership approach has led to the development of a set of five illustrative videos and accompanying activities that address issues that emerged from the collaborative process including: culture, activities, support from staff, important people, choices and independence. These resources are freely available at: www.Toolsfortalking.co.uk. They are designed to be used by users and providers of services, but may also be useful in other settings.

Occipital nerve stimulation for chronic migraine--a systematic review and meta-analysis.

BACKGROUND: Chronic migraine is a debilitating headache disorder that has significant impact on quality of life. Stimulation of peripheral nerves is increasingly being used to treat chronic refractory pain including headache disorders. This systematic review examines the effectiveness and adverse effects of occipital nerve stimulation (ONS) for chronic migraine. METHODS: Databases, including the Cochrane Library, MEDLINE, EMBASE, CINAHL and clinical trial registers were searched to September 2014. Randomized controlled trials (RCTs), other controlled and uncontrolled observational studies and case series (n≥ 10) were eligible. RCTs were assessed using the Cochrane risk of bias tool. Meta-analysis was carried out using a random-effects model. Findings are presented in summary tables and forest plots. RESULTS: Five RCTs (total n=402) and seven case series (total n=115) met the inclusion criteria. Pooled results from three multicenter RCTs show that ONS was associated with a mean reduction of 2.59 days (95% CI 0.91 to 4.27, I2=0%) of prolonged, moderate to severe headache per month at 3 months compared with a sham control. Results for other outcomes generally favour ONS over sham controls but quantitative analysis was hampered by incomplete publication and reporting of trial data. Lead migration and infections are common and often require revision surgery. Open-label follow-up of RCTs and case series suggest long-term effectiveness can be maintained in some patients but evidence is limited. CONCLUSIONS: While the effectiveness of ONS compared to sham control has been shown in multiple RCTs, the average effect size is modest and may be exaggerated by bias as achieving effective blinding remains a methodological challenge. Further measures to reduce the risk of adverse events and revision surgery are needed. SYSTEMATIC REVIEW REGISTRATION: this systematic review is an update and expanded work of part of a broader review registered with PROSPERO. Registration No. CRD42012002633.

Caregiver's concerns-quality of life scale (CC-QoLS): development and evaluation of psychometric properties.

We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test-retest reliability with an ICC of 0.81 for CC (range 0.46-0.83 across items) and 0.80 for QoL (range 0.65-0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31-0.63 across items) and 0.63 for QoL (range 0.31-0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman-Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r=0.4; p≤0.01 and QoL: r=-0.2; p≤0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r=0.5; p≤0.01 and QoL: r=-0.02; p≤0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties.

The effectiveness of aripiprazole in the management of problem behaviour in people with intellectual disabilities, developmental disabilities and/or autistic spectrum disorder--a systematic review.

The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), developmental disabilities (DD) and/or autistic spectrum disorders (ASD) can be challenging. Antipsychotic medications are commonly prescribed where other strategies have failed. A systematic review (SR) was conducted to establish the research evidence for the efficacy of aripiprazole in the management of PB in adults and children with ID, DD and/or ASD. Although included studies supported the efficacy of aripiprazole for this indication, the overall quality of studies was poor. Of the 20 studies included in this systematic review there were only two randomised controlled trials (RCTs) on children with ASD and/or ID/DD, both of which were conducted by the pharmaceutical company that manufactures aripiprazole, and it is not clear whether a number of same participants were included in both RCTs. One of the RCTs was extended into an open label long term follow up, which showed that aripiprazole's efficacy lasted over 52 weeks and the adverse effects were tolerable. Four studies were open label prospective studies, 11 were retrospective case reports which included four single case reports, and two were prospective case series. Most studies reported adverse effects from aripiprazole in the form of weight gain, increased appetite, sedation, tiredness, drooling and tremor. However, aripiprazole improved serum prolactin level in some participants and overall did not show any adverse effect on QTc interval. There is a need for more carefully designed RCTs into the use of aripiprazole in the management of PB in people with ID/DD and/or ASD, which should be carried out independent of pharmaceutical companies.

Efficacy of beta blockers in the management of problem behaviours in people with intellectual disabilities: a systematic review.

Both medication and non-medication based strategies are used in the management of problem behaviours in individuals with intellectual disabilities. Beta-adrenoceptor blocking medications are one group of drugs used for this purpose. However, despite its regular use, the evidence for the efficacy of these drugs for in this context is lacking. A systematic review was conducted to establish the research evidence for the efficacy of beta blockers in problem behaviours in adults and children with intellectual disabilities. Although the research identified supported the efficacy of beta blockers for this indication the overall quality of studies identified was poor and no randomised controlled trials were identified. There is a need for more robust research into the use of beta blockers for people with intellectual disabilities who show problem behaviours.

Efficacy of atypical antipsychotic medication in the management of behaviour problems in children with intellectual disabilities and borderline intelligence: a systematic review.

The use of medications to manage problem behaviours is widespread. However, robust evidence to support their use seems to be lacking. The aim was to review research evidence into the efficacy of atypical antipsychotic medication in managing problem behaviour in children with intellectual disabilities and borderline intelligence. A systematic review was conducted for placebo-controlled randomised double-blind trials. The included studies (N = 6) showed that risperidone was significantly more effective than placebo in managing problem behaviours. However, most studies highlighted adverse events primarily somnolence and weight gain. There is now some evidence in favour of the use of risperidone. However, because of possible adverse events, these medications have to be used with caution.

Scales for the identification of adults with attention deficit hyperactivity disorder (ADHD): a systematic review.

Attention deficit hyperactivity disorder (ADHD) is prevalent in the adult population. The associated co-morbidities and impairments can be relieved with treatment. Therefore, several rating scales have been developed to identify adults with ADHD who may benefit from treatment. No systematic review has yet sought to evaluate these scales in more detail. The present systematic review was undertaken to describe the properties, including psychometric statistics, of the currently available adult ADHD rating scales and their scoring methods, along with the procedure for development. Descriptive synthesis of the data is presented and study quality has been assessed by an objective quality assessment tool. The properties of each scale are discussed to make judgements about their validity and usefulness. The literature search retrieved 35 validation studies of adult ADHD rating scales and 14 separate scales were identified. The majority of studies were of poor quality and reported insufficient detail. Of the 14 scales, the Conners' Adult ADHD Rating scale and the Wender Utah Rating Scale (short version) had more robust psychometric statistics and content validity. More research into these scales, with good quality studies, is needed to confirm the findings of this review. Future studies of ADHD rating scales should be reported in more detail so that further reviews have more support for their findings.

Use of medication for the management of behavior problems among adults with intellectual disabilities: a clinicians' consensus survey.

Current prescribing preferences among relevant experts regarding the use of psychotropic medication for the management of behavior problems in adults with intellectual disabilities in the absence of a diagnosed psychiatric illness was defined. We used a questionnaire design to synthesize the preferences of a large group, namely, clinical psychiatrists, thereby establishing a consensus. A total of 108 completed questionnaires were analyzed. A very strong preference for the use of nonmedication-based interventions was established. Of the medication options presented, atypical antipsychotics were most favored, with Risperidone the most preferred option from within this group. Citalopram was the most preferred antidepressant and Carbamazepine, the most preferred mood stabilizer/antiepileptic.

Psychotropic medication for behaviour problems in people with intellectual disability: a review of the current literature.

PURPOSE OF REVIEW: A high proportion of people with intellectual disability have behaviour problems and psychotropic medication is a commonly used management strategy for these behaviours, despite lack of good-quality evidence to support this practice. RECENT FINDINGS: In recent years, one randomized controlled trial among adults and four on children with intellectual disability have been published showing effectiveness of low-dose risperidone in the management of behaviour problems as compared with placebo. Most of these randomized controlled trials are of good quality and included a reasonable number of participants. Most of these studies showed adverse effects, however, somnolence and weight gain particularly being associated with risperidone treatment. Most of the evidence on other psychotropic medications such as antidepressants, mood stabilizers, antianxiety drugs and opioid antagonists is difficult to interpret because it is based primarily on small case studies. SUMMARY: There is growing evidence in support of some antipsychotic medication, particularly the atypical antipsychotic, risperidone. Many of the studies of effectiveness included in this review have methodological flaws however. Therefore, the results need to be interpreted with caution. Furthermore, the paucity of evidence for some groups of medication does not necessarily mean that these medications are ineffective, but rather that their use is not currently supported by good-quality research.