Complex Learning Disabilities Research Articles

Adapting an anti‐bullying programme for UK special schools

AbstractBullying is a public health priority but to date, there is a lack of evidence‐based anti‐bullying programmes or interventions designed for use in special schools. KiVa is a successful anti‐bullying programme for mainstream schools currently used in 23 countries. This brief paper outlines the co‐development and adaptation of two KiVa lessons into KiVa‐SEND lessons and their implementation in two special schools in the UK. One school supports pupils with a primary need of Autism, the other supports pupils with severe and complex learning disabilities. Engagement with the lessons was high from both pupils and staff; the content was perceived as acceptable by staff, complementing the curriculum and perceived as suitable for their pupils. Minor adjustments need to be made to ensure all pupils can comprehend and access the concepts. Further development of the KiVa‐SEND programme and testing its potential effectiveness to reduce bullying and associated negative outcomes in special schools is now warranted. Key Points There is a lack of evidence‐based anti‐bullying programmes for use in special schools. This paper details the piloting of an adaptation of KiVa (a successful, evidence‐based anti‐bullying programme for mainstream schools) for use in special schools. The adaption (KiVa‐SEND) was a co‐design between a couple of special school teachers, and educational and psychological researchers to ensure the materials and approach were in line with school requirements and teaching practices. The KiVa‐SEND lesson engagement was excellent from the 12 staff and 62 learners involved and the materials were deemed acceptable via direct feedback and researcher observations. Suggestions were provided on how to make the materials even more suitable for diverse learning needs. KiVa‐SEND has the potential to be embedded within the special school curriculum and then be tested for its effectiveness at reducing bullying and associated negative outcomes of bullying amongst the special school population.

Co-design and delivery of a relational learning programme for nursing students and young people with severe and complex learning disabilities

BackgroundNational Health Service (NHS) staff in the UK are required to undergo training about learning disabilities at the appropriate level for their role. However, this requirement does not apply to nurses in training and student nurses report fear and anxiety about caring for people with intellectual learning disabilities (ILDs). Young people with intellectual disabilities report feeling scared of nurses and parents feel staff do not listen to them or involve them in care. Objectives(i) For a university and special school for young people with server and complex ILDs to work in partnership to co-design a programme for nursing students, young people, their teachers, and parents. (ii) To deliver the programme online as part of the university's existing nursing courses. DesignThe partnership between the university and the special school focused on co-design of an interactive programme, parent involvement, safeguarding, and the design of accessible learning resources to support young people with severe and complex ILDs' engagement. The programme was informed by relational inquiry, service user and transformative pedagogies, and parents and teacher's knowledge and views about the young people. Delivery of the programme was designed to fit into existing nursing courses and enable students on placement and young people at home or in hospital to participate. A rights-based ethnographic evaluation was designed to support participant feedback and programme development. SettingThe Heritage2Health Virtual Arts and Drama Programme was piloted with nursing students at one UK university and young people with severe and complex ILDs from one special school, their parents and teachers. Participants15 nursing students (BSc Year 2 = 10, Year 3 = 3, MSc = 2) and 7 young people with severe and complex learning disabilities (age 11-14 yrs). Other participants were parents/guardians of young people (7), arts/drama facilitators (2), academic lecturers (2), special needs teachers (2), registered nurse (1). MethodsAn 8-week dynamic programme of arts and drama. Sessions included 30-min start-up/presencing, 45-min storytelling/drama with young people and parents, 30-min reflection/close. Sessions were facilitated by 2 arts and drama specialists. The story of ‘Ubuntu the Lion with the Long, Long, Mane’ (by TNP) was used to explore difference and ways of being. The evaluation methods were participant observation, semi-structured interviews (2–6 weeks post) and thematic analysis. ResultsParticipation in the programme was a challenging, creative, and reflective experience that was transformative for all. Nurses and young people's fears and anxieties about each other were revealed and addressed by participating in arts and drama activities together. Nursing students learnt how to adopt a relational orientation to young people and their parents and teachers. ConclusionsA co-designed programme for nursing students and young people with severe and complex ILDs can benefit student knowledge and skills and reduce fears and anxieties between nurses and young people with ILDs. With adequate planning and resources, the programme could be adopted by multidisciplinary partnerships between other universities and special schools.

Lost voices part 2: Modifying psychological therapies for two young men with complex learning disabilities following alleged sexual and physical abuse: A case study in trauma recovery

Accessible summary Two young men who have learning disabilities became mentally ill. They said that they had been hurt by their carers. They said that the carers hit them and made them have sex with them. They had post‐traumatic stress disorder, which made them scream, cry, hurt themselves and have frightening nightmares. They were helped by a Mental Health of Learning Disabilities Team. They talked to a psychologist which helped them to understand what happened to them. Talking to the psychologist helped them to get better. They could do the things that they enjoyed again. The therapy took 2 years. This paper writes about new and better ways to help people who have learning disabilities recover when someone has hurt them or frightened them. AbstractBackgroundThis is the second of two papers describing a case study of two young men with complex learning disabilities. They presented with severe trauma‐related mental distress following alleged sexual, emotional and physical abuse. This paper concerns the psychological intervention and support provided for them and their families over a period of 2 years. There is a lack of research, guidance and evaluated therapeutic models for the assessment and treatment of people with complex learning and communication needs following abuse.MethodsIn this case, therapeutic interventions were modified from systemic and narrative therapies and interpersonal psychotherapy. Creative techniques included acting, drawing and walks to develop a therapeutic relationship, to experience affect in a contained and safe way and to support the development of coherent narratives.ResultsRecovery moved through stages of remembering and recounting, understanding and assimilating and improved mental well‐being and coping strategies.ConclusionsModified models of therapy proved effective and further research recommended. The personal strengths and family support of the men were critical in progressing recovery.

Supporting the education of pupils with profound intellectual and multiple disabilities: the views of teaching assistants regarding their own learning and development needs

Learning support assistants or teaching assistants play a vital role in the education of pupils with complex learning disabilities, routinely supporting students on a 1:1 basis without the direct supervision of teachers. Despite the responsibility afforded these classroom support staff, there appear to be few training programmes designed for this specialised role. This qualitative study, by Trudi Martin of the Manchester Institute of Education, was undertaken at a special school in England. The study explored the views of 17 teaching assistants and five teachers regarding the extent to which teaching assistant training equipped them to support pupils with complex learning needs. The findings illustrated that much of the training, including that on the Qualifications and Credit Framework, provided inadequate information and guidance. Without sufficient knowledge to underpin their practice, teaching assistants are impeded in the educational support they can give to pupils, who face significant learning challenges, with a resultant impact on their students' ability to learn and develop new skills.

Addressing health inequities: coronary heart disease training within learning disabilities services

Accessible summary People with a learning disability have a special risk of developing certain problems with their health. Heart disease can also happen to people with a learning disability. We do not know how we should help people with a learning disability stay healthy and not develop heart disease. We trained staff using a programme designed to improve what they know about heart disease. This programme also helps staff learn ways to help people improve their health. After training, staff knew a lot more about heart disease and felt more confident about being able to improve the health of people with a learning disability. Summary People with learning disabilities are at increased risk of coronary heart disease (CHD). Research suggests this may be due to inequalities in health status and inequities in the way health services respond to need. Little is known about the most effective way to improve health outcomes for people with learning disabilities. A previously developed CHD educational resource was piloted within residential community support organisations working closely with adults with complex learning disabilities. Following the training, improvements in knowledge of CHD-related topics were noted. Improvements were also seen in skills and confidence relating to working with others. Participant satisfaction with the training was demonstrated in terms of the acceptability and effectiveness of the training. Systematic training of this nature could lead to increased awareness of and attention to the cardiac health requirements of individuals, thereby improving the health outcomes, health literacy and ultimately self-management of people with learning disabilities.

Greek mainstream secondary school teachers’ perceptions of inclusive education and of having pupils with complex learning disabilities in the classroom/school

The purpose of this study was to examine Greek mainstream secondary school teachers’ perceptions of inclusive education and of having pupils with complex learning disabilities (cLD) in the classroom or school. Participants included 138 Greek mainstream secondary school teachers working in inclusive state schools in northern Greece. Findings indicated that 47.5% of the participants were against the inclusion of all pupils with special educational needs (SEN) in mainstream secondary schools. Three variables were found to be associated with teachers’ attitudes about the inclusion of pupils with cLD: age, years of teaching experience and SEN training. Overall, it is suggested that training, as well as perceived competence and sense of support, were important in influencing teachers’ attitudes about including pupils with cLD in mainstream classrooms. It is proposed that the recent implementation of inclusive education in Greece and the prevailing rudimentary conditions for its implementation might also have had an impact on teachers’ attitudes.

‘It’s a tricky one to answer, that …’ Locus of control in parents and caregivers of children with severe and complex learning disabilities and challenging behaviours

This paper examines how locus of control is expressed in caregivers’ descriptions of children’s behaviour. Locus of control has been considered a key factor in enabling parents and caregivers to respond to challenging behaviour in children with severe and complex disabilities, but assessment of parental or carer locus of control has usually been based on the a priori assumption that individuals show predominant patterns of response that remain consistent across situations whether parents are considering their own or other children.Experiential descriptions by the parents and caregivers of six children whose behaviours severely challenged their ability to care were reviewed. Analysis of caregiver descriptions suggested that locus of control was situation specific and parents’ ‘locus of control’ less clearly identifiable in the transcripts than suggested by literature based on the use of standardised forms. The focus of parent and caregiver locus of control shifted between external and internal, with prima facie evidence that shifts were related to real life ‘barriers’ (MacNaughton & Rodrigue, 2001).The relevance and validity of the concept of locus of control in the context of challenging behaviour is discussed. It is suggested that identifying caregiver perceptions in relation to specific circumstances (in particular, children’s challenging behaviour) may be more constructive than using generalised measures of locus of control.

A group for the parents and carers of children with severe intellectual disabilities and challenging behaviour

There is evidence for the effectiveness of parent–training programmes in improving parents’ mental wellbeing and parenting skills and their perceptions of their children’s behaviour. Group-based parent-training programmes are regarded as particularly cost-effective, though need to be supplemented with individualised work for highly-stressed families, and there is little evidence for their long-term effectiveness. There have been no evaluations of such programmes for parents of children with intellectual disabilities. This paper describes the content and long-term evaluation of a group-based parent-training programme for parents and carers of children with severe and complex learning disabilities, presenting with challenging behaviour.The programme uses videotaped modelling of children with their parents and teachers, with feedback from the group facilitators and other parents in the group. Parents often join groups expressing feelings of loneliness and guilt and with little confidence in their parenting skills. A postal evaluation questionnaire to parents who had attended groups over an eight-year period identified that 64 per cent thought that the groups had made a difference to their children’s behaviour and almost 90 per cent thought that the groups had made a difference to them. Most commonly, parents reported that the groups helped them to feel less alone. Inspection of referral rates to the local clinical psychology service indicated that only 31 per cent of parents who attended groups, subsequently required any further individual help with behaviour. It is hypothesised that the groups were particularly popular and effective as they reduced social isolation of carers.

An Evaluation of the Introduction of Facilitated Person‐Centred Planning with People with Learning Disabilities Leaving a Hospital Setting: Sharing the Knowledge

This article considers some of the issues raised by an evaluation of facilitated person‐centred planning (PCP) for six people with severe and complex learning disabilities residing in a long‐stay hospital. The hospital is earmarked for closure, and all six are to be resettled. Using a realist approach, evaluators explored such questions as whether the views of people with severe learning disabilities had been accessed, what makes PCP person‐centred and who should participate in a plan. These questions raised awareness of the effect of timescales and a selective training programme in relation to PCP, and the impact this has had on effective person‐centred planning.

Developing the role of schools as research organisations: the Sunfield experience

We are entering a new phase in learning about childhood disabilities. While we have found out much of what we need to know about their causes and aetiology, solutions to many of the challenges we will face in the future will come from the evidence base held by practitioners. Practitioners are ideally placed to carry out ‘real world’ research but they often need support in carrying out setting‐based enquiry. In this article, Barry Carpenter, Chief Executive and Director of Research at Sunfield, discusses the relationship between academic and practitioner research and the role of practitioners as researchers. He goes on to explore the development of a research culture in special schools, focusing on Sunfield, a residential special school for children with severe and complex learning disabilities. Barry Carpenter shows how research projects at Sunfield have generated evidence which has guided the school's development. The inter‐disciplinary approach adopted in this setting has encouraged involvement in research from many staff in diverse professions throughout the school.

Early communication strategies: using video analysis to support teachers working with preverbal pupils

Carolyn Anderson is a speech and language therapist who is currently working as a senior lecturer at the University of Strathclyde. In this article she provides an early account of her ongoing research into communication between teachers and pupils with severe and complex learning disabilities. Video recordings were made of teacher-pupil interactions. The recordings were then analysed in terms of the numbers of turns taken by pupils and teachers; the strategies teachers and pupils used to initiate and respond in interactions; and the numbers of information carrying words teachers used with pupils with different levels of language comprehension. Carolyn Anderson's findings will help teachers who want to develop their own awareness of the role they play in communicating with pupils. This research will also support staff who are trying to encourage pupils with learning difficulties to become more actively involved in interactions and teaching and learning opportunities.

Connecting with RE: an approach to religious education for children with autism and/or severe and complex learning disabilities

In this article Liz O'Brien discusses the need for a distinctive approach to the religious education of children and young people with autism and/or severe and complex learning disabilities. She describes how an imaginative and creative approach, built on an underlying principle of understanding, empathy and respect in relation to the ‘culture of autism’ can lead to enriching, meaningful and enjoyable RE experiences. Through an RE and Special Needs Fellowship, awarded by the National Society for Promoting Christian Education, she was given the opportunity to assemble Connecting with RE (O'Brien, 2002), a resource for all those seeking accessible RE for children with autism and/or severe and complex learning disabilities. This article presents some of the fundamental philosophy and methodology that underpin the Connecting with RE approach.

Clinical implications of a link between fetal alcohol spectrum disorder and attention-deficit hyperactivity disorder.

To provide an overview of the animal and human research literature on the link between fetal alcohol spectrum disorder (FASD) and attention-deficit hyperactivity disorder (ADHD). We conducted a comprehensive literature review that addressed the history of, and current research on, fetal alcohol syndrome (FAS) and FASD, as well as that on ADHD in children. In animal and human research, there is emerging clinical, neuropsychological, and neurochemical evidence of a link between FASD and ADHD. The evidence of the link between these 2 conditions has implications for clinical management. The clinical quality of ADHD in children with FASD often differs from that of children without FASD. For children with FASD, ADHD is more likely to be the earlier-onset, inattention subtype, with comorbid developmental, psychiatric, and medical conditions. Children with FASD are commonly not mentally retarded but present complex learning disabilities, especially a mixed receptive-expressive language disorder with deficits in social cognition and communication (reminiscent of sensory aphasia and apraxia), working memory problems, and frequently, a mathematics disorder. Comorbid psychiatric conditions include anxiety, mood, conduct, or explosive disorders. As well, cardiac, renal, or skeletal problems are more likely to be present. Because these children have a disturbance in brain neurochemistry, or even brain structure (that is, in the corpus callosum), their response to standard psychostimulant medication can be quite unpredictable.

Teachers’ talk styles: communicating with learners with severe and complex learning difficulties

A small-scale, in-depth study of teachers’ talk in interaction with learners with severe and complex learning disabilities and very limited communication abilities is reported. The teachers had all participated in training on Intensive Interaction, a method based on the model of caregiver-infant interaction and focused on the quality of interpersonal interactions. Sequential systematic observation was used to analyse video samples of interaction, focusing on teachers’ talk styles compared with the ‘motherese’ linguistic style used with infants, and addressing whether engagement in the communication process was achieved.

An examination of the effects of gentle teaching on people with complex learning disabilities and challenging behaviour.

This study was conducted to investigate the efficacy of gentle teaching when compared with individual educational programming (IEP) for a group of people with complex learning disabilities and challenging behaviour. An A-B design was used, in which gentle teaching was introduced as an addition to the IEP procedures already in place. Other designs, such as reversal, multiple baseline or group comparisons would have been impractical in this clinical setting. Thirteen students and seven staff were observed, using a hand-held computer for direct observations, and video-recordings for measures of interaction. Staff attitudes to gentle teaching and to the IEP system were also assessed. The intervention was systematic workshop-based training in gentle teaching for all staff. Measures were taken pre-intervention for 13 weeks and post-intervention for 23 weeks. Approximately 45 hours of direct observational data and over 50 hours of video-recording were analysed. We found very few effects of gentle teaching. Wherever there were differences between gentle teaching and IEP these were in favour of gentle teaching, although they were generally relatively minor in terms of clinical (rather than statistical) significance. Inter-rater reliabilities were generally poor, although the figures for those categories where there was a difference between gentle teaching and IEP were amongst the most respectable. Gentle teaching did not have a major impact on staff behaviour, and no discernible effect on student behaviour, but it did not lead to poorer interactions and may be a useful adjunct to more structured approaches such as individual educational programming.