Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities

Background: Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method Forty-five Special Olympics Canada coaches participated in structured telephone interviews investigating actual and ideal sources of coaching knowledge. Coaching knowledge was categorized across the dimensions of competition, organization and training. Results Coaches primarily learned by doing and by consulting with coaching peers. Information about ideal sources of coaching knowledge demonstrates that coaches would value structured coaching courses, learning from mentors and from administrative support, in addition to learning on their own and from peers. Discussion Results suggest that a broader approach to education should be incorporated into coaching athletes with intellectual disabilities. Recommendations for achieving such goals are provided.

The Lived Experience of People with Mental Health and Substance Misuse Problems: Dimensions of Belonging

Introduction: People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method: Researchers employed an interpretative phenomenological approach to the study. Four semi-structured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings: Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion: The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’.

Children with Learning Disabilities and Challenging Behaviour: Relationship between Parents and Professionals

This multi-perspectival Interpretive Phenomenological Analysis (IPA) study explored how people in the ‘networks of concern’ talked about how they tried to make sense of the challenging behaviours of four children with severe learning disabilities. The study also aimed to explore what affected relationships between people. The study focussed on 4 children through interviewing their mothers, their teachers and the Camhs Learning Disability team members who were working with them. Two fathers also joined part of the interviews. All interviews were conducted separately using a semi-structured approach. IPA allowed both a consideration of the participant’s lived experiences and ‘objects of concern’ and a deconstruction of the multiple contexts of people’s lives, with a particular focus on disability. The analysis rendered five themes: the importance of love and affection, the difficulties, and the differences of living with a challenging child, the importance of being able to make sense of the challenges and the value of good relationships between people. Findings were interpreted through the lens of CMM (Coordinated Management of Meaning), which facilitated a systemic deconstruction and reconstruction of the findings. The research found that making sense of the challenges was a key concern for parents. Sharing meanings were important for people’s relationships with each other, including employing diagnostic and behavioural narratives. The importance of context is also highlighted including a consideration of how societal views of disability have an influence on people in the ‘network of concern’ around the child. A range of systemic approaches, methods and techniques are suggested as one way of improving services to these children and their families. It is suggested that adopting a ‘both/and’ position is important in such work - both applying evidence based approaches and being alert to and exploring the different ways people try and make sense of the children’s challenges. Implications for practice included helping professionals be alert to their constructions and professional narratives, slowing the pace with families, staying close to the concerns of families and addressing network issues.

Challenges to improve inter-professional care and service collaboration for people living with psychiatric disabilities in ordinary housing

The aim of this study was to describe health care- and social service professionals' experiences of a quality-improvement program implemented in the south of Sweden. The focus of the program was to develop inter-professional collaboration to improve care and service to people with psychiatric disabilities in ordinary housing. Focus group interviews and a thematic analysis were used. The result was captured as themes along steps in process. (I) Entering the quality-improvement program: Lack of information about the program, The challenge of getting started, and Approaching the resources reluctantly. (II) Doing the practice-based improvement work: Facing unprepared workplaces, and Doing twice the work. (III) Looking backevaluation over 1 year: Balancing theoretical knowledge with practical training, and Considering profound knowledge as an integral part of work. The improvement process in clinical practice was found to be both time and energy consuming, yet worth the effort. The findings also indicate that collaboration across organizational boundaries was broadened, and the care and service delivery were improved.

The sexual health knowledge of people with intellectual disabilities: A review.

There is a growing recognition that people with disabilities have the same sexual needs and rights as people without disabilities. However, less attention is paid to the sexuality of people diagnosed with intellectual disabilities. This narrative review summarises what is currently known about the level of sexual health knowledge of people with intellectual disabilities. A literature review was conducted of the published literature using Google Scholar, PubMed, PsychInfo, EBSCOhost, and Science Direct. Forty eight articles were identified that addressed the question about the level of sexual health knowledge of people with intellectual disabilities. Overall, studies demonstrate that people with intellectual disabilities are highly variable in levels of sexual knowledge, but on average have a range of deficits in knowledge compared to non-disabled individuals. More tailored education and support in accessing formal and informal sources of information are needed.

Children with intellectual disabilities’ perceptions of their participation in activities in everyday life – a pilot study : A minor field study conducted in Ethiopia

Background: Children with disabilities living in low and middle income countries’ perceptions of participation are not shown in research. These perceptions are important for providing appropriate interventions. Aim: To describe how children aged 8-12 with an intellectual disability living in Ethiopia perceive their situation regarding participation in activities in everyday life. Method: A descriptive design with a quantitative approach was used. The sample was gathered using consecutive sampling. Fifteen structured interviews were conducted, using “Picture my participation,” an instrument under development. Analyses were made using SPSS Statistics and Microsoft Excel. Results: The children perceived that they participated in activities in everyday life. There was a broad variation in the activities the children prioritized as most important. On a group level, they were very involved in these activities. The majority did not experience any barriers to perform these activities. Conclusions: The perceptions of the majority of the children were that they were involved in daily activities. They did not experience any barriers to participation. The results should be read with caution and generalization is not possible, due to the sample characteristics and that the instrument is under development.

Assessment of visual function in children with multiple disabilities: two case studies of children with cerebral palsy

Purpose: a) multiply handicapped children have a high incidence of disorders affecting the visual system; b) assessment and management of visual disorders in this group of children presents a complex challenge; c) this study describes the results of visual function assessment in two children with neurological disability over a one-year period.

Why Does Employment Discrimination Persist against People with Mental Illness? Effects of Negative Stereotypes, Power, and Differential Discrimination

Mental illness affects a sizable minority of Americans at any given time, yet many people with mental illness (hereafter PWMI) remain unemployed or underemployed relative to the general population. Research has suggested that part of the reason for this is discrimination toward PWMI. This research investigated mechanisms that affect employment discrimination against PWMI. Drawing from theories on stigma and power, three studies assessed 1) the stereotyping of workers with mental illness as unfit for workplace success, 2) the impact of positive information on countering these negative stereotypes, and whether negatively-stereotyped conditions elicited discrimination; and 3) the effects of power on mental illness stigma components. I made a series of predictions related to theories on the Stereotype Content Model, illness attribution, the contact hypothesis, gender and mental health, and power. Studies tested predictions using, 1) an online vignette survey measuring attitudes, 2) an online survey measuring responses to fictitious applications for a middle management position, and 3) a laboratory experiment in which some participants were primed to feel powerful and some were not. Results of Study 1 demonstrated that PWMI were routinely stigmatized as incompetent, dangerous, and lacking valued employment attributes, relative to a control condition. This was especially evident for workers presented as having PTSD from wartime service and workers with schizophrenia, and when the worker was a woman. Study 2 showed that, although both war-related PTSD and schizophrenia evoke negative stereotypes, only schizophrenia evoked hiring discrimination. Finally, Study 3 found no effect of being primed to feel powerful on stigmatizing attitudes toward a person with symptoms of schizophrenia. Taken together, findings suggest that employment discrimination towards PWMI is driven by negative stereotypes; but, stereotypes might not lead to actual hiring discrimination for some labeled individuals.

Understanding and validating accelerometry as a measure of physical activity in children with intellectual disabilities

Background Physical activity in children with intellectual disabilities is a neglected area of study, which is most apparent in relation to physical activity measurement research. Although objective measures, specifically accelerometers, are widely used in research involving children with intellectual disabilities, existing research is based on measurement methods and data interpretation techniques generalised from typically developing children. However, due to physiological and biomechanical differences between these populations, questions have been raised in the existing literature on the validity of generalising data interpretation techniques from typically developing children to children with intellectual disabilities. Therefore, there is a need to conduct population-specific measurement research for children with intellectual disabilities and develop valid methods to interpret accelerometer data, which will increase our understanding of physical activity in this population. Methods Study 1: A systematic review was initially conducted to increase the knowledge base on how accelerometers were used within existing physical activity research involving children with intellectual disabilities and to identify important areas for future research. A systematic search strategy was used to identify relevant articles which used accelerometry-based monitors to quantify activity levels in ambulatory children with intellectual disabilities. Based on best practice guidelines, a novel form was developed to extract data based on 17 research components of accelerometer use. Accelerometer use in relation to best practice guidelines was calculated using percentage scores on a study-by-study and component-by-component basis. Study 2: To investigate the effect of data interpretation methods on the estimation of physical activity intensity in children with intellectual disabilities, a secondary data analysis was conducted. Nine existing sets of child-specific ActiGraph intensity cut points were applied to accelerometer data collected from 10 children with intellectual disabilities during an activity session. Four one-way repeated measures ANOVAs were used to examine differences in estimated time spent in sedentary, moderate, vigorous, and moderate to vigorous intensity activity. Post-hoc pairwise comparisons with Bonferroni adjustments were additionally used to identify where significant differences occurred. Study 3: The feasibility on a laboratory-based calibration protocol developed for typically developing children was investigated in children with intellectual disabilities. Specifically, the feasibility of activities, measurements, and recruitment was investigated. Five children with intellectual disabilities and five typically developing children participated in 14 treadmill-based and free-living activities. In addition, resting energy expenditure was measured and a treadmill-based graded exercise test was used to assess cardiorespiratory fitness. Breath-by-breath respiratory gas exchange and accelerometry were continually measured during all activities. Feasibility was assessed using observations, activity completion rates, and respiratory data. Study 4: Thirty-six children with intellectual disabilities participated in a semi-structured school-based physical activity session to calibrate accelerometry for the estimation of physical activity intensity. Participants wore a hip-mounted ActiGraph wGT3X+ accelerometer, with direct observation (SOFIT) used as the criterion measure. Receiver operating characteristic curve analyses were conducted to determine the optimal accelerometer cut points for sedentary, moderate, and vigorous intensity physical activity. Study 5: To cross-validate the calibrated cut points and compare classification accuracy with existing cut points developed in typically developing children, a sub-sample of 14 children with intellectual disabilities who participated in the school-based sessions, as described in Study 4, were included in this study. To examine the validity, classification agreement was investigated between the criterion measure of SOFIT and each set of cut points using sensitivity, specificity, total agreement, and Cohen’s kappa scores. Results Study 1: Ten full text articles were included in this review. The percentage of review criteria met ranged from 12%−47%. Various methods of accelerometer use were reported, with most use decisions not based on population-specific research. A lack of measurement research, specifically the calibration/validation of accelerometers for children with intellectual disabilities, is limiting the ability of researchers to make appropriate and valid accelerometer use decisions. Study 2: The choice of cut points had significant and clinically meaningful effects on the estimation of physical activity intensity and sedentary behaviour. For the 71-minute session, estimations for time spent in each intensity between cut points ranged from: sedentary = 9.50 (± 4.97) to 31.90 (± 6.77) minutes; moderate = 8.10 (± 4.07) to 40.40 (± 5.74) minutes; vigorous = 0.00 (± .00) to 17.40 (± 6.54) minutes; and moderate to vigorous = 8.80 (± 4.64) to 46.50 (± 6.02) minutes. Study 3: All typically developing participants and one participant with intellectual disabilities completed the protocol. No participant met the maximal criteria for the graded exercise test or attained a steady state during the resting measurements. Limitations were identified with the usability of respiratory gas exchange equipment and the validity of measurements. The school-based recruitment strategy was not effective, with a participation rate of 6%. Therefore, a laboratory-based calibration protocol was not feasible for children with intellectual disabilities. Study 4: The optimal vertical axis cut points (cpm) were ≤ 507 (sedentary), 1008−2300 (moderate), and ≥ 2301 (vigorous). Sensitivity scores ranged from 81−88%, specificity 81−85%, and AUC .87−.94. The optimal vector magnitude cut points (cpm) were ≤ 1863 (sedentary), ≥ 2610 (moderate) and ≥ 4215 (vigorous). Sensitivity scores ranged from 80−86%, specificity 77−82%, and AUC .86−.92. Therefore, the vertical axis cut points provide a higher level of accuracy in comparison to the vector magnitude cut points. Study 5: Substantial to excellent classification agreement was found for the calibrated cut points. The calibrated sedentary cut point (ĸ =.66) provided comparable classification agreement with existing cut points (ĸ =.55−.67). However, the existing moderate and vigorous cut points demonstrated low sensitivity (0.33−33.33% and 1.33−53.00%, respectively) and disproportionately high specificity (75.44−.98.12% and 94.61−100.00%, respectively), indicating that cut points developed in typically developing children are too high to accurately classify physical activity intensity in children with intellectual disabilities. Conclusions The studies reported in this thesis are the first to calibrate and validate accelerometry for the estimation of physical activity intensity in children with intellectual disabilities. In comparison with typically developing children, children with intellectual disabilities require lower cut points for the classification of moderate and vigorous intensity activity. Therefore, generalising existing cut points to children with intellectual disabilities will underestimate physical activity and introduce systematic measurement error, which could be a contributing factor to the low levels of physical activity reported for children with intellectual disabilities in previous research.

Glasgow Psychosis Screening tool for use in adults with Intellectual Disabilities (GPS-ID): development and psychometric properties

Background: Prevalence of psychosis is known to be higher in adults with intellectual disabilities (ID) than in the general adult population. However, there have been no attempts to develop a psychosis screening tool specifically for the adult ID population. The present study describes the development and preliminary evaluation of a new measure, the Glasgow Psychosis Screening tool for use in Adults with Intellectual Disabilities (GPS-ID). Method: An item pool was generated following: 1) focus groups with adults with ID and psychosis, and their carers and/or workers; 2) expert input from clinicians. A draft scale was compiled and refined following expert feedback. The new scale, along with the Psychotic Symptom Rating Scales was administered to 20 adults with ID (10 with and 10 without psychosis) and their relative or carers. Results: The GPS-ID total score, self-report subscale and informant rating-subscale differentiated psychosis and non-psychosis groups. The tool had good internal consistency (Cronbach’s α=0.91), and a cut-off score ≥4 yielded high sensitivity (90%) and specificity (100%). The method of tool development supports face and content validity. Criterion validity was not supported. Conclusions: Preliminary investigation of the tool’s psychometric properties is positive, although further investigation is required. The tool is accessible to adults with mild to moderate ID and can be completed in 15-30 minutes. The GPS-ID is not a diagnostic tool, therefore any adult exceeding the cut-off score of ≥4 should receive further assessment.

Independence or Protection - does it have to be a choice? Reflections on the abuse people with learning disabilities in Cornwall

This commentary will use recent events in Cornwall to highlight the ongoing abuse of adults with learning disabilities in England. It will critically explore how two parallel policy agendas – namely, the promotion of choice and independence for adults with learning disabilities and the development of adult protection policies – have failed to connect, thus allowing abuse to continue to flourish. It will be argued that the abuse of people with learning disabilities can only be minimised by policies which reflect an understanding that choice and independence must necessarily be mediated by effective adult protection measures. Such protection needs to include not only an appropriate regulatory framework, access to justice and well-qualified staff, but also a more critical and reflective approach to the current orthodoxy which promotes choice and independence as the only acceptable goals for any person with a learning disability.

Young people with learning disabilities who sexually abuse: understanding, identifying and responding from within generic education and welfare services

This chapter will start by providing an overview of current knowledge about young people with learning disabilities who sexually abuse. Research cited will, unless otherwise indicated, be limited to UK studies since international variations in the definitions of both learning disability and sexual abuse make the use of a wider literature base problematic – particularly that relating to prevalence and incidence. It will then go on to report key findings from a recent study (Fyson et al, 2003; Fyson, 2005) which examined how special schools and statutory child protection and youth offending services in four English local authorities responded to sexually inappropriate or abusive behaviours exhibited by young people with learning disabilities. It will conclude by highlighting areas of current practice which give cause for concern, and suggest some pointers for future best practice.