• 2400 Day in the life

      Dinsdale, Paul (2005)
      With five years' experience in the research world, Sue Jaycock tells Paul Dinsdale how she now helps others to follow in her footsteps.
    • A comparison of anger in offenders and non-offenders who have intellectual disabilities

      Nicoll, Matthew (2013)
      Background: There is growing evidence of the effectiveness of cognitive behavioural therapy to treat anger in offenders with intellectual disabilities. The aim is to lower anger levels; the rationale is that this will reduce recidivism. However, the hypothesis that anger levels amongst offenders are higher than non-offenders has not been tested.; Method: The study utilizes a case-comparison design to examine whether levels of anger are higher amongst people with intellectual disabilities who have offended in comparison with those who have not offended. Anger levels are compared for 29 offenders with intellectual disabilities and 27 non-offenders with intellectual disabilities (all male).; Results: No differences were found between offenders and non-offenders on measures of anger. The offending group was shown to have higher levels of aggression.; Conclusions: Results suggest that there is no difference in levels of anger between offender and non-offenders to begin with. The limitations of the study are discussed, but the implication of the study questions the legitimacy of the rationale to utilize anger treatment to reduce recidivism in offenders with intellectual disabilities.; © 2013 John Wiley & Sons Ltd.
    • A comparison of offenders with intellectual disability across three levels of security

      Hogue, Todd E.; Mooney, Paul; Johnston, Susan J. (2006)
      BACKGROUND: A number of authors have described, with disparate results, the prevalence of people with intellectual disability and their characteristics, in a range of offender cohorts defined by service use. These have included high security, a range of criminal justice services and community services. There is a need for research comparing cohorts of offenders with intellectual disabilities across different settings. AIM AND HYPOTHESIS: To conduct such a comparison and test the hypothesis that severity of characteristics measured will be highest in highest levels of residential security.
    • A comparison of three approaches to delivering a speech and language therapy service to people with learning disabilities

      Money, Della (1997)
      This research aimed to compare three different approaches to delivering a speech and language therapy service to people with learning disabilities, in order to make recommendations for future service delivery. The three approaches all involved working with key communication partners in the environment. They were: (i) working directly on a one-to-one basis with the person and partner; (ii) working indirectly by providing teaching for partners; and (iii) a combination of these two approaches. A teaching course called 'Talkabout' was used. Talkabout aims for staff to reach a recognised level of knowledge and competence in communication skills, thus facilitating the communication skills of their service users. The results indicated that whilst communication changed in all three approaches, overall changes were greater in the combination approach. Only the combination approach demonstrated statistically significant differences following intervention, in terms of staff initiations, service user responses, and their use of additional modalities.;
    • A psychodynamic interpretation of staff accounts of working with people who have learning disabilities and complex needs

      Collis, Mary-Ann; Clegg, Jennifer (2012)
      Experiences of eight staff working with people who have a learning disability and complex mental health needs were explored by interviews and analysed using the free association narrative interview approach (Hollway & Jefferson 2000). Participants reported that organisational factors such as not having enough permanent staff and having to manage a complex patient mix impacted upon their work. Participants unconscious communications were interpreted as evidence that they were experiencing projected anxiety from their patients. Participants did not appear to be given opportunities in work to reflect upon their emotions and often coped by repressing painful experiences or displacing these onto the organisation. Staff would benefit from exploring their conscious and unconscious reactions to their patients.
    • A systematic review and synthesis of outcome domains for use within forensic services for people with intellectual disabilities

      Ferriter, Michael; Duggan, Conor (2017)
      BACKGROUNDThere is limited empirical information on service-level outcome domains and indicators for the large number of people with intellectual disabilities being treated in forensic psychiatric hospitals.AIMSThis study identified and developed the domains that should be used to measure treatment outcomes for this population.METHODA systematic review of the literature highlighted 60 studies which met eligibility criteria; they were synthesised using content analysis. The findings were refined within a consultation and consensus exercises with carers, patients and experts.RESULTSThe final framework encompassed three a priori superordinate domains: (a) effectiveness, (b) patient safety and (c) patient and carer experience. Within each of these, further sub-domains emerged from our systematic review and consultation exercises. These included severity of clinical symptoms, offending behaviours, reactive and restrictive interventions, quality of life and patient satisfaction.CONCLUSIONSTo index recovery, services need to measure treatment outcomes using this framework.DECLARATION OF INTERESTNone.COPYRIGHT AND USAGE© The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Attribution (CC BY) licence.
    • A therapeutic community for personality disorder in a high secure intellectual disability service: Inception and early experiences

      Taylor, Jon; Trout, Sarah; Christopher, Janice; Bland, Alan (2012)
      Purpose: This paper seeks to explain the reasons for use of a therapeutic community for personality disorder in a high secure intellectual disability service. Design/methodology/approach: The paper describes the rationale for, and early experiences of, a therapeutic community intervention for people with mild intellectual disability and personality disorder in a high secure setting. Findings: No empirical findings are reported. Evaluation is being undertaken and will be reported in due course. Originality/value: The therapeutic community approach has not been applied in forensic intellectual disability before, and this paper therefore describes an original and, in many ways, radical intervention. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
    • Adapting individual psychotherapy for adults with intellectual disabilities: A comparative review of the cognitive-behavioural and psychodynamic literature

      Tudway, Jeremy A. (2006)
      Background Historically, adults with intellectual disabilities have had little access to individual psychotherapy. Over the last 20 years an increasing body of literature has described psychotherapy with this client group and reported methods for adapting traditional psychotherapeutic techniques. Method The current review identified the frequency of adaptations suggested by b36Hurley et al. (1998) [Journal of Developmental and Physical Disabilities, vol. 10, pp. 365-386] within cognitive behavioural and psychodynamic studies with adults with intellectual disabilities. Twenty-five studies were reviewed, 10 cognitive-behavioural and 15 psychodynamic. Results A total of 94 adaptations were identified. Within cognitive behavioural therapy (CBT) studies, flexibility in method was the most frequently considered adaptation whilst transference and countertransference issues were most frequently considered within psychodynamic studies. Across the two approaches, disability and rehabilitation issues were given the least consideration. Conclusions Implications for practitioners and services are highlighted along with recommendations for future research. © 2006 BILD Publications.
    • Addressing the inverse care law: The role of community paediatric services

      Beeley, Chris (2014)
      Background: Children's health suffers disproportionately from the effects of poverty. The inverse care law states that those who need care the most are the least likely to receive it. Community paediatricians are well placed to address health inequalities in children. Aims: To explore, using routinely collected data, whether we address health inequalities and the inverse care law, particularly for certain conditions targeted by our specialty. Methods: Five years of data were analysed, during which health equity audits have led to service changes in order to tackle inequities. The data include postcodes, allowing each child to be assigned to a deprivation quintile, and a range of diagnoses, including five sentinel conditions: attention deficit hyperactivity disorder (ADHD) on medication, autistic spectrum disorder (ASD), epilepsy, cerebral palsy and Down's syndrome. This allowed analysis of the caseload by deprivation index for these conditions, comparison with the background population and exploration of time trends. Results: The number of children on the caseload and their distribution across the quintiles remained stable. The proportion of deprived children (i.e. in the lowest two quintiles) on the caseload over the last five years taken together is 56%, compared to 44% in the background population. The numbers of children with ADHD on medication has almost quadrupled in deprived quintiles and doubled in the least deprived quintile, while the numbers of children with this diagnosis in the most deprived is four times that in the least deprived. Numbers of children with ASD have also increased in each quintile. In contrast, the number of children with epilepsy and cerebral palsy did not show much variation, but those from deprived quintiles made up a greater proportion of the caseload. Conclusions: Routine data collection demonstrates that inequalities are addressed using all four quality domains of service provision and sentinel conditions more likely to affect deprived children are targeted. We believe it is possible for all services to collect and analyse data thus with minimal effort, thereby providing a foundation from which to address the inverse care law.
    • Adult attachment and care staff functioning

      Clegg, Jennifer (2016)
      Care staff around the world make huge differences every day in the lives of people with intellectual disabilities (ID). Care staff provide support, advice and protection, and may scaffold the autonomous exploration and development of people with ID. By doing so, they enrich the network of meaningful social relationships that humans need to flourish. Similar to family relationships of young people with ID, better quality relationships between care staff and people with ID have been linked with fewer challenging behaviours in services. The goal of this chapter is to make a case for including attachment among the perspectives that should be considered in research, policy and practice around client-staff relationships. The central message of this chapter is that in order to improve care interactions and relationships, attention is required to understand attachment processes in people with ID and attachment processes in care staff as well. Implications of the small body of research on this issue will be discussed with regards to: policy and quality control, service development and organization, care staff and clients (PsycINFO Database Record (c) 2017 APA, all rights reserved) (Source: chapter)
    • Alcohol problems and intellectual disability

      Wilson, David N. (1999)
      The present paper discusses some of the difficulties in working with people with an intellectual disability and an alcohol problem, and draws on the sparse literature about alcohol problems in people with intellectual disability. Four individuals drawn from the current clinical case loads of medical practitioners in UK community intellectual disability services are described. Some suggestions for staff training, patient education and health promotion, and therapeutic approaches are made.
    • The analysis of talk sessions between staff and adults with profound intellectual disability

      Clegg, Jennifer (1991)
      Examined interactions between 20 adults (aged 16–38 yrs; developmental age 1–25 mo) with profound intellectual disability and staff of social services day centers, during sessions when the Ss' staff member talked with them. Results show that, in relatively ideal conditions, Ss responded positively during approximately one-third of session time; the staff were very responsive to changes in Ss' behavior; and Ss were most likely to respond negatively to changes in staff behavior, if they responded at all. No evidence of turn-taking between the interactors was found. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
    • Antenatal support for people with learning disabilities

      Harrison, Ruth (2015)
      Following the introduction of learning disability nurses in acute and primary care in 2009, several health areas were taken into consideration as a priority for change. Maternity services were considered in order to bring this area into line with the other parts of the UK. This article will examine the provision of services for people with learning disabilities, and identify areas for improvement including educational needs for midwives. Outcomes of an audit and evaluations of local services against national policy and provision will be highlighted, barriers faced by both prospective parents with a learning disability and by professionals will be discussed and recommendations for future practice will be presented. Misleading diagnosis, discrepancies in numbers and training developments will also be addressed. Despite Government policy identifying that 'reasonable adjustment' must be made when supporting parents with a learning disability, 23 midwives, team managers and health care assistants in midwifery services in Nottinghamshire have highlighted that there is little awareness in the field locally.
    • Antisocial and psychopathic personality disorders in forensic intellectual disability populations: What do we know so far?

      Morrissey, Catrin (2011)
      Antisocial personality disorder (APD) and the more severe personality disorder of psychopathy both have particular relevance to forensic populations, but it is only recently that these constructs have begun to be explored in forensic populations who have intellectual disabilities. This paper reviews the emerging theoretical and empirical evidence in this field. Consideration is given to conceptual issues, the validity of the constructs, and emerging evidence for reliability and validity of existing measures in this particular forensic group. The lack of treatment outcome studies with respect to APD and psychopathy in this group is noted. While these constructs may be useful in understanding and treating some offenders with intellectual disability, these such labels can also result in negative outcomes for individuals. Caution is indicated in their broad application until further relevant research is completed.
    • Applicability, reliability and validity of the Psychopathy Checklist-Revised in offenders with intellectual disabilities: Some initial findings

      Morrissey, Catrin; Hogue, Todd E.; Mooney, Paul; Johnston, Susan J. (2005)
      As apart of a larger study, the Psychopathy Checklist-Revised (PCL-R) was used to assess psychopathy in 203 individuals from three UK National Health Service settings for offenders with intellectual disabilities (ID): a high security hospital, a medium and low security hospital and a community based service. The PCL-R was rated from file review combined with a clinician interview. Internal consistency and inter-rater reliability were acceptable, and broadly comparable to that reported for other offender populations. The instrument was also associated in largely expected ways with level of security, and with measures of antisocial personality disorder, risk, and current behavioural functioning, providing some preliminary indications of convergent validity. However, further empirical investigation is required before the PCL-R can be used with confidence to make clinical and risk-based decisions in this population. (PsycINFO Database Record (c) 2016 APA, all rights reserved)(journal abstract)
    • Asking parents/carers of young children with Down syndrome about specific eating behaviours and feeding practices could lead to more effective tailored support for feeding problems

      Wood, Sian (2022)
      Commentary on: Rogers SL, Smith B, Mengoni SE. Relationships between feeding problems, eating behaviours and parental feeding practices in children with Down syndrome: A cross‐sectional study. J Appl Res Intellect Disabil. 2022;35(2):596–606. Commentary: Feeding problems have a significant physical, functional and emotional impact on children with DS and their parents/carers,1 2 and are therefore an important area of study. This paper adds to existing evidence highlighting the greater incidence of feeding difficulties children with DS experience1 6 by offering comparisons to TD children. The study identifies greater food avoidance traits as a risk factor for feeding problems and offers suggestive evidence that for children with DS a shorter duration of receiving breast milk may be indicative of later feeding problems, highlighting the need for further research into this area. The findings act as a reminder to healthcare professionals to explore early eating behaviours and parental feeding practices in detail to identify specific areas for support. There is however a lack of depth to the study implications discussion. Consideration of factors such as feeding skills, the impact of dysphagia, the role of professionals with expertise in feeding/dysphagia management and the impact of children with DS’s communication differences on parental feeding practices could have offered greater clinical utility. The authors acknowledge the limitations of the sample size and large age range reducing generalisability and the cross-sectional nature of their study limiting the ability to address causality. There are few strong clinical implications nonetheless; this paper offers further insights to professionals working with parents/carers striving to meet the eating and drinking needs of children with DS.
    • Assessing adaptive behaviour with pre-lingually deaf people with an intellectual disability who use sign language

      Baker, Kevin L. (2015)
      Objectives: To determine whether the traditional assessment of adaptive behaviour is valid with deaf people who use sign language. Some Deaf people with a mild intellectual disability often struggle to gain fluency in sign language and hence experience high levels of exclusion from both hearing and deaf communities and support services. They can struggle to find ways of solving many of the difficulties of modern life and can struggle to develop some adaptive behaviours. Without an appreciation of the linguistic and cultural context of a Deaf person, assessment is difficult. There is a question whether comparisons should be made with Deaf people without ID or to hearing people with and without an ID. Methods: A small sample of deaf people with an intellectual disability was assessed about their adaptive behaviour in their first language of British Sign Language using the ABAS-III. This was triangulated with the views of their support staff who were also deaf and sign language users. Each participant and their adaptive behaviour were discussed in BSL. Results: For each participant, the responses to each item of the ABAS-III was systematically analysed for construct validity and discussed with Deaf support workers. Items which were difficult to adapt or appeared inappropriate or inaccurate were identified. Comparisons to the age norms were made. Conclusions: Findings suggests that formal assessment of adaptive behaviour of Deaf people with ID should be used with caution. Recommendations for a valid assessment of adaptive behaviour are made based on the findings of this study.
    • Assessment of the feasibility and clinical value of further research to evaluate the management options for children with Down syndrome and otitis media with effusion: A feasibility study

      Sutton, Kate (2014)
      Background: There is clinical uncertainty of the benefits and costs of different treatment options for children with Down syndrome who have glue ear. This study was designed to assess the extent of this lack of knowledge and determine if pursuing further information would be practical, beneficial and cost-effective.; Objectives: To assess the level and practical effect of current uncertainty around treatment options for children with Down syndrome and glue ear. To assess the feasibility of studying the options for management of glue ear in children with Down syndrome via a randomised controlled trial (RCT) or multicentre prospective cohort study by evaluating the willingness of (1) parents to agree to randomisation for their children and (2) clinicians to recruit participants to a definitive study. To undertake value of information analyses to demonstrate the potential economic benefit from undertaking further research.; Design: A feasibility study exploring the views of parents of children with Down syndrome and professionals who have responsibility for the health and education of children with Down syndrome, on the participation in, and value of, future research into interventions for glue ear. Data were collected from parents via self-completed questionnaires, face-to-face interviews and focus groups and from professionals via online questionnaires and a Delphi review exercise. Development of economic models to represent clinical pathways of care and a RCT informed a value of information (VOI) analysis.; Setting: UK (professionals); East Midlands region of the UK (parents).; Participants: Parents of children aged 1-11 years with Down syndrome (n = 156). Professionals including audiologists, ear, nose and throat surgeons, audiological physicians, speech and language therapists, and teachers of the deaf (n = 128).; Main Outcome Measures: Quantitative and qualitative data on parental views and experiences of glue ear and its effects; interventions and treatment received; taking part in research and factors that would encourage or discourage participation; and the importance of various outcome domains to them and for their children. For professionals: information on caseloads; approaches to clinical management; opinions on frequency and significance of the consequences of glue ear for this population; importance of different outcome measures; opinions of interventions and their role in future research; views on health research; facilitators and barriers to recruitment, and participation in research involving RCTs.; Results: The complexity of the experience and individual characteristics of children with Down syndrome poses challenges for the design of any future research but these challenges were not considered by professionals to raise sufficient barriers to prevent it being undertaken. Parents were generally supportive of the need for, and value of, research but identified practical and emotional issues that would need addressing. Glue ear was considered to impact more on speech, language and communication than on hearing. Outcome measures for future research would need to evaluate these elements but measures should be designed specifically for the population. Parents and professionals identified randomisation as a significant barrier to participation. The VOI analyses identified lack of data as problematic but concluded that a future trial involving surgical intervention would be feasible at costs of < £650,000.; Conclusions: Future research into the benefits of interventions for glue ear in children with Down syndrome would be feasible and could be cost-effective but should be carefully designed to facilitate and maximise participation from parents and professionals responsible for recruitment.; Funding: The National Institute for Health Research Health Technology Assessment programme.;
    • 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)