Why reinvent the wheel? A behaviour analyst's reflections on pedagogy for inclusion for students with intellectual and developmental disability

The number of children identified as having intellectual or developmental disability is rising worldwide and their education has been found wanting. It has been said that “they simply need better teaching.” At the same time, there is an increasing evidence base that pedagogy that is based on the discipline of behaviour analysis offers the best prospect for individuals diagnosed with autism spectrum disorders. On the basis of this evidence, it is proposed that behaviour analysis should be applied more broadly to improve teaching for all children with intellectual or developmental disability.

End-of-Life care and people with intellectual disabilities: A multi-media educational resource

Aim This study aimed to develop and evaluate a multi-media educational resource in palliative and end-of-life care for specialist palliative care and intellectual disability services which promoted collaborative working. Methods: A mixed methods design involving three phases was used. Qualitative data were obtained from semi-structured interviews with a purposive sample of professionals (n=30) and family carers (n=5) and from two focus groups with people with intellectual disabilities (n=17). Data were content analysed as outlined y Newell and Burnard (2006). This identified training needs and issues, in end-of-life care for this population which were confirmed through quantitative data from services in a regional scoping study analysed using descriptive statistics. A DVD and manual were developed and evaluated with twelve professionals. Data were collected using a solicited diary, the Readiness for Inter-professional Learning Scale, Likert Scales and an evaluation questionnaire. Thematic analysis and descriptive statistics appropriate to data were used.Results: Findings suggest that this resource demonstrates the need for and benefits of partnership working and transferability of this learning to practice could address issues at end-of-life for people with intellectual disabilities. Conclusions: Findings of this study have importance for partnership working and service provision in end-of-life care for this population.

The relationship between the recognition of facial expressions and self-reported anger in people with intellectual disabilities

Background This study aims to examine the relationship between how individuals with intellectual disabilities report their own levels of anger, and the ability of those individuals to recognize emotions. It was hypothesized that increased expression of anger would be linked to lower ability to recognize facial emotional expressions and increased tendency to interpret facial expressions in a hostile or negative manner. It was also hypothesized increased levels of anger may lead to the altered perception of a particular emotion.

Method A cross-sectional survey design was used. Thirty participants completed a test of facial emotion recognition (FER), and a self-report anger inventory (Benson & Ivins 1992) as part of a structured interview.

Results Individuals with higher self-reported anger did not show significantly reduced performance in FER, or interpret facial expressions in a more hostile manner compared with individuals with less self-reported anger. However, they were less accurate in recognizing neutral facial emotions.

Conclusions It is tentatively suggested that individuals with high levels of anger may be likely to perceive emotional content in a neutral facial expression because of their high levels of emotional arousal.

A study protocol for a pilot randomised trial of a structured education programme for the self-management of type 2 diabetes for adults with intellectual disabilities

BACKGROUND: The need for structured education programmes for type 2 diabetes is a high priority for many governments around the world. One such national education programme in the United Kingdom is the DESMOND Programme, which has been shown to be robust and effective for patients in general. However, these programmes are not generally targeted to people with intellectual disabilities (ID), and robust evidence on their effects for this population is lacking. We have adapted the DESMOND Programme for people with ID and type 2 diabetes to produce an amended programme known as DESMOND-ID. This protocol is for a pilot trial to determine whether a large-scale randomised trial is feasible, to test if DESMOND-ID is more effective than usual care in adults with ID for self-management of their type 2 diabetes, in particular as a means to reduce glycated haemoglobin (Hb1Ac), improve psychological wellbeing and quality of life and promote a healthier lifestyle. This protocol describes the rationale, methods, proposed analysis plan and organisational and administrative details.

METHODS/DESIGN: This trial is a two arm, individually randomised, pilot trial for adults with ID and type 2 diabetes, and their family and/or paid carers. It compares the DESMOND-ID programme with usual care. Approximately 36 adults with mild to moderate ID will be recruited from three countries in the United Kingdom. Family and/or paid carers may also participate in the study. Participants will be randomly assigned to one of two conditions using a secure computerised system with robust allocation concealment. A range of data will be collected from the adults with ID (biomedical, psychosocial and self-management strategies) and from their carers. Focus groups with all the participants will assess the acceptability of the intervention and the trial.

DISCUSSION: The lack of appropriate structured education programmes and educational materials for this population leads to secondary health conditions and may lead to premature deaths. There are significant benefits to be gained globally, if structured education programmes are adapted and shown to be successful for people with ID and other cognitive impairments.

TRIAL REGISTRATION: Registered with International Standard Randomised Controlled Trial (identifier: ISRCTN93185560 ) on 10 November 2014.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

Assistive software tools for secondary-level students with literacy difficulties.

Study conducted to evaluate the effectiveness of four assistive technology (AT) tools on literacy: (1) speech synthesis, (2) spellchecker, (3) homophone tool, and (4) dictionary. All four of these programs are featured in TextHelp’s Read&Write Gold software package. A total of 93 secondary-level students with reading disabilities participated in the study. The participants completed a number of computer-based literacy tests after being assigned to a Read&Write group or a control group that utilized Microsoft Word. The results indicated that improvements in the following areas for the Read&Write group: (1) reading comprehension, (2) homophone error detection, (3) spelling error detection, and (4) word meanings. The Microsoft Word group also improved in the areas of word meanings and error detection, though performed worse on homophone error detection. The authors contend that these results indicate that speech synthesis, spell checkers, homophone tools, and dictionary programs have a positive effect on literacy among students with reading disabilities. This study was conducted by researchers at the Queen’s University in Belfast, Ireland.

Obesity in People with Learning Disabilities: the impact of nurse led health screenings and health promotion activities

Background. Obesity appears to be more common among people with intellectual disabilities, with few studies focusing on achieving weight reduction. Aim. Firstly, to follow up people identified as overweight and obese following special health screening clinics and to determine the actions taken. Secondly, to evaluate the impact of health promotion classes on participants' weight loss. Methods. A clinic led by two learning disbaility nurses was held for all people aged 10 years and over (n=464) who attended special services within the area of one Health and Social Services Trust in Northern Ireland. In a second study, the nurses organised health promotion classes for 20 people over a 6 - 8 week period. Findings. The health screen identified 64% of adults and 26% of 10 - 19 year olds as being overweight or obese. Moreover, those aged 40 - 49 years who were obese had significantly higher levels of blood pressure. However, information obtained from a follow up questionnaire sent after 3 months suggested that of the 122 people identified for wiehgt reduciton, action had been taken for only 34% of them and only three were reported to have lost weight. The health promotion classes, however, led to a significant reduction in weight and body mass index scores. Conclusion. Health screening per se has limited impact on reducing obesity levels in this client group. Rather, health personnel such as general practitioners, nurses and health promotion staff need to work in partnership with service staff, carers and people with intellectual disabiltieis to create more active lifestyles.

Proofreading Using an Assistive Software Homophone Tool Compensatory and Remedial Effects on the Literacy Skills of Students With Reading Difficulties

The present study investigated the effects of using an assistive software homophone tool on the assisted proofreading performance and unassisted basic skills of secondary-level students with reading difficulties. Students aged 13 to 15 years proofread passages for homophonic errors under three conditions: with the homophone tool, with homophones highlighted only, or with no help. The group using the homophone tool significantly outperformed the other two groups on assisted proofreading and outperformed the others on unassisted spelling, although not significantly. Remedial (unassisted) improvements in automaticity of word recognition, homophone proofreading, and basic reading were found over all groups. Results elucidate the differential contributions of each function of the homophone tool and suggest that with the proper training, assistive software can help not only students with diagnosed disabilities but also those with generally weak reading skills.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.