Journal of Applied Research in Intellectual Disabilities (J Appl Res Intellect Disabil)

Publications in this journal

• Article: Adapted Physical Activity Programme and Self-Perception in Obese Adolescents with Intellectual Disability: Between Morphological Awareness and Positive Illusory Bias.

  Laureline Salaun, Eric Reynes, Sophie E Berthouze-Aranda
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  ABSTRACT: BACKGROUND: In adolescent with intellectual disability, the management of obesity is a crucial issue, yet also quite complex because of their particular perception of themselves. This study investigated the relationship between self-perception variables and morphological variables and their changes after a 9-month Adapted Physical Activity (APA) programme. MATERIALS AND METHODS: Twenty-three adolescents with intellectual disability responded to an adapted questionnaire, including the PSI-VSF-ID and a nine-drawing body silhouette scale. Anthropometric and body composition indicators were measured before and after the APA programme. RESULTS: The main predictor of the adolescents' self-perceptions was the inclination towards positive illusory bias before the intervention; obesity awareness ranked second. Morphological measurements did not contribute in the same way to self-perceptions in the initial and final data. CONCLUSIONS: This study confirms the interest of weight management programmes for adolescents with intellectual disability and points to the need to take positive illusory bias more fully into account in the study of self-perception.
  Journal of Applied Research in Intellectual Disabilities 05/2013;
• Article: Prosocial Motivation, Stress and Burnout Among Direct Support Workers.

  Robert Hickey
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  ABSTRACT: AIM: This study explores whether the desire to engage in work that is beneficial to others moderates the effects of stress on burnout. METHOD: Based on a survey of 1570 direct support professionals in Ontario, this study conducted linear regression analyses and tested for the interaction effects of prosocial motivation on occupational stress and burnout. RESULTS: Prosocial motivation significantly moderated the association of emotional exhaustion (EE) and role boundary stress with depersonalization (DP). Prosocial motivation also moderated the effects of role ambiguity stress with a direct support worker's sense of personal accomplishment. In contrast, prosocial motivation magnified feelings of EE when interacted with a sense of personal accomplishment. CONCLUSIONS: Prosocial motivation plays an important role in explaining the relatively low levels of DP in the sector. The study advances our understanding of the key components of burnout among direct support workers.
  Journal of Applied Research in Intellectual Disabilities 05/2013;
• Article: Effect of Exposure to Special Olympic Games on Attitudes of Volunteers towards Inclusion of People with Intellectual Disabilities.

  Chunxiao Li, Chee Keng John Wang
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  ABSTRACT: BACKGROUND: The aim of this study was to examine the effect of volunteering for Special Olympics Games (SOG) on the attitudes of volunteers towards inclusion of people with intellectual disabilities. METHOD: A repeated measures design with 3-week follow-up was used. There were 100 volunteers recruited for the study and 90 of them completed the study. RESULTS: It was revealed that a 1-week exposure to the SOG improved volunteers' attitudes towards inclusion of people with intellectual disabilities significantly (P = 0.016). Females had more positive attitudes than males at all three time points of measures. The interaction effect of gender was not significant. CONCLUSIONS: A 1-week exposure to the SOG can enhance volunteers' positive attitudes towards inclusion of people with intellectual disabilities and this effect can maintain for up to a month.
  Journal of Applied Research in Intellectual Disabilities 05/2013;
• Article: How Effective is the Cognitive Interview When Used with Adults with Intellectual Disabilities Specifically with Conversation Recall?

  Jason Clarke, Katherine Prescott, Rebecca Milne
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  ABSTRACT: BACKGROUND: The cognitive interview (CI) has been shown to increase correct memory recall of a diverse range of participant types, without an increase in the number of incorrect or confabulated details. However, it has rarely been examined for use with adults with intellectual disability. MEASURES AND METHOD: This study compared the memory recall of twenty-one adults with a mild intellectual disability (ID) (IQ 70-50) and twenty-one adults from the general population (GP). Participants viewed a film of a staged distraction theft and were interviewed using either the CI or the structured interview (SI). RESULTS: The CI, when compared to the SI, enhanced the correct recall of person, action and conversation (gist) detail for both participant types, without increasing the number of incorrect or confabulated details reported. The ID group reported significantly less correct information than the GP regardless of the interview used. CONCLUSION: The findings suggest that the CI can enable adults with intellectual disability to provide a fuller picture about an experienced event. Implications of this research are discussed.
  Journal of Applied Research in Intellectual Disabilities 05/2013;
• Article: Deaths among children, adolescents, and young adults with down syndrome.

  Nancy Miodrag, Sophie E Silverberg, Richard C Urbano, Robert M Hodapp
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  ABSTRACT: Although life expectancies in Down syndrome (DS) have doubled over the past 3-4 decades, there continue to be many early deaths. Yet, most research focuses on infant mortality or later adult deaths. In this US study, hospital discharge and death records from the state of Tennessee were linked to examine 2046 hospitalized individuals with DS (85 died) in three age groups: children (1-9), adolescents (10-19) and young adults (20-29). Most deaths occurred to young adults, while children had the most hospitalizations. Leading causes of death were cardiovascular and pulmonary conditions, and patients who died had longer hospital stays. Proportions of female deaths rose in young adulthood, and disproportionately more African Americans died at each age period. Mortality is high among young adults with DS. Special vigilance is needed for individuals with DS who are female, African American and in their 20s.
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):207-14.
• Article: Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities.

  Irene Tuffrey-Wijne, Nikoletta Giatras, Gary Butler, Amanda Cresswell, Paula Manners, Jane Bernal
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  ABSTRACT: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non-disclosure. Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. People with intellectual disabilities had wide-ranging views about disclosure. Reasons for non-disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement. Disclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice.
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):231-42.
• Article: Using action research to design bereavement software: engaging people with intellectual disabilities for effective development.

  Sue Read, Sol Nte, Patsy Corcoran, Richard Stephens
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  ABSTRACT: Background Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using Participatory Action Research (PAR) to develop this tool. Materials and methods Participator Action Research provided the indicative framework for the process of developing a software tool that is likely to be used in practice. Results People with intellectual disability worked alongside researchers to produce an accessible, flexible piece of software that can facilitate storytelling around loss and bereavement and promote spontaneous expression that can be shared with others. Conclusion This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs.
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):195-206.
• Article: The Experience of Carers in Supporting People with Intellectual Disabilities through the Process of Bereavement: An Interpretative Phenomenological Analysis.

  Emily Handley, Nick Hutchinson
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  ABSTRACT: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement. A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA). A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support. Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement.
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):186-94.
• Article: The road barely taken: funerals, and people with intellectual disabilities.

  Rachel Forrester-Jones
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  ABSTRACT: The topic of funerals within the life cycle approach to care in the UK remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach. Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals. More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know.
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):243-56.
• Article: Death, dying and intellectual disability research.

  Stuart Todd, Jane Bernal, Rachel Forrester-Jones
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):183-5.
• Article: 'Being there': the Experiences of Staff in Dealing with Matters of Dying and Death in Services for People with Intellectual Disabilities.

  Stuart Todd
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  ABSTRACT: Research on staffed housing for people with intellectual disability has identified the challenges in achieving postitive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from 'being there' with individuals over those phases.
  Journal of Applied Research in Intellectual Disabilities 05/2013; 26(3):215-30.
• Article: Friendship Quality in Adolescents with and without an Intellectual Disability.

  Leigh A Tipton, Lisa Christensen, Jan Blacher
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  ABSTRACT: BACKGROUND: High friendship quality is often defined by high levels of intimacy, companionship, closeness and low levels of conflict. Quality friendships develop over time and may be influenced by both behaviour problems and social skills. MATERIALS AND METHODS: Participants were 103, 13-year-old adolescents with or without intellectual disabilities in the United States. Adolescents and their mothers participated in an open-ended interview of friendship quality and completed measures of social skills and behaviour problems. This study addressed differences in friendship quality between children with and without intellectual disabilities and explored early indicators of friendship development. RESULTS: Adolescents with intellectual disabilities (ID) had friendships characterized by significantly lower levels of warmth/closeness and positive reciprocity than their typically developing peers. Likewise, adolescents with ID spent less time with friends outside of school and were less likely to have a cohesive group of friends. Social skills and behaviour problems at age 9 predicted friendship quality at age 13 above and beyond disability status, with higher levels of social skills and lower levels of behaviour problems related to higher ratings on measures of friendship quality. CONCLUSIONS: It appears that adolescents with intellectual disabilities have friendships that are characterized by less warmth/closeness and less positive reciprocity than the friendships of their typically developing peers. This discrepancy appears to be impacted by early social skills and behaviour problems in addition to the presence of the intellectual disability.
  Journal of Applied Research in Intellectual Disabilities 04/2013;
• Article: Exploring Patterns of Unwanted Behaviours in Adults with Prader-Willi Syndrome.

  Riccardo Pignatti, Ileana Mori, Laura Bertella, Graziano Grugni, Daniela Giardino, Enrico Molinari
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  ABSTRACT: BACKGROUND: Obsessive-compulsive (O-C) traits, and excessive food intake are well known behavioural manifestations among individuals with Prader-Willi Syndrome (PWS). Other unwanted behaviours are also frequently observed, but they need a more specific investigation, especially in the adult population. METHODS: The behaviour of 31 PWS adults was investigated via the Symptom Checklist-90-Revised (SCL-90-R), the Yale-Brown Obsessive Compulsive Scale Symptom Checklist (Y-BOCS-SC), and the Prader-Willi Behavioural Checklist (PBC). The PBC is a quick screening questionnaire prompted specifically for the investigation on adults with PWS. RESULTS: Statistical clustering revealed two patterns of unwanted behaviours from the PBC. Behaviours belonging to the first cluster (e.g. Excessive food intake, Skin picking) appear to be linked to the usual phenotypic manifestation of PWS. By contrast, many other behaviours (e.g. some O-C symptoms and aggressive actions) could show a relationship also to individual psychopathologies. CONCLUSIONS: Both internal (Anxiety and Depression) and external (Hostility) difficulties in managing impulses should account for individually distinct behaviours in adults with PWS.
  Journal of Applied Research in Intellectual Disabilities 04/2013;
• Article: High Prevalence of Hearing Loss at the Special Olympics: Is This Representative of People with Intellectual Disability?

  C Hey, S Fessler, N Hafner, B P Lange, H A Euler, K Neumann
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  ABSTRACT: BACKGROUND: The Healthy Hearing (HH) programme at the Special Olympics (SO) revealed hearing disorders in between 16 and 40% of athletes. However, it is not clear whether these prevalence represents the entire population with intellectual disability. Therefore, this study compares the hearing status of SO athletes with an intellectual disability (ID) to students with ID at a special needs school. MATERIALS AND METHODS: The HH screening was performed in 637 athletes (mean age 27.1 years, range 9.7-70.6 years) during the 2008 German SO Summer Games - and in 198 special needs students (mean age 12.7 years, range 6.7-20.0 years). RESULTS: Twenty-two per cent of athletes and 18% of students failed the HH screening. Approximately 60% of the total participants received recommendations for further follow-up and treatment without between-group differences. CONCLUSIONS: The results of the HH screening at SO events are assumed to be representative of children and adolescents with ID in special needs schools.
  Journal of Applied Research in Intellectual Disabilities 04/2013;
• Article: Validity and Reliability of the Korean Version of the Behaviour Problems Inventory.

  Byounglock Jeong, Eunyoung Yoo, Minye Jung, Daehyuk Kang, Soyeon Park, Soo Hyun Park
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  ABSTRACT: BACKGROUND: The aim of this study was to establish the psychometric properties of the Korean Behaviour Problems Inventory (BPI-01). METHODS: Fifty-five allied professionals completed a content validity questionnaire about the Korean BPI-01. To examine reliability, 52 individuals with intellectual disabilities residing in a medium-sized residential home were evaluated by two occupational therapists trained in the administration of the Korean BPI-01 through interviews with caregivers who had known the residents at least 6 months. RESULTS: Allied professionals' responses supported the content validity of the Korean BPI-01. The results of intraclass correlation coefficients and Cronbach's α indicate that the Korean BPI-01 is a reliable instrument. CONCLUSIONS: The results of the present study indicate that the Korean BPI-01 holds adequate content validity and reliability for measuring behavioural problems in individuals with intellectual disabilities in Korean clinical settings.
  Journal of Applied Research in Intellectual Disabilities 04/2013;
• Article: Use and Acceptance of AAC Systems by Children with Angelman Syndrome.

  Stephen N Calculator
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  ABSTRACT: BACKGROUND: This investigation of children with Angelman syndrome (AS) examined reported uses of electronic augmentative and alternative communication (AAC) devices (i.e. VOCAs), including speech generating devices, in relation to other aided and unaided methods of communication. MATERIALS AND METHOD: A total of 122 parents of children with AS, mostly from the USA self-administered a survey over the Internet. Qualitative methods based primarily on thematic analysis were used to organize and examine data. RESULTS: Children relied heavily on unaided methods of communication such as natural gestures, regardless of their experiences with electronic communication devices. Parents cited various reasons for children's acceptance or rejection of their most advanced devices. DISCUSSION: Clinical implications are discussed in relation to children's needs for multimodal methods of communication, including accurately matching children's capabilities to AAC device characteristics. Practitioners are encouraged to consider reasons that parents cited for children's acceptance versus rejection of devices when implementing AAC programs.
  Journal of Applied Research in Intellectual Disabilities 04/2013;
• Article: Assessment of Executive Functions in Prader-Willi Syndrome and Relationship with Intellectual Level.

  J Chevalère, V Postal, J Jauregui, P Copet, V Laurier, D Thuilleaux
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  ABSTRACT: INTRODUCTION: The aim of the present study was to determine whether individuals with Prader-Willi syndrome (PWS) have impaired global executive functioning and whether this deficit is linked with intellectual disability. Another objective focussed on the variability in performance of intellectual quotient (IQ) and executive functions (EF) depending on the genotypic subtype. A final objective investigated whether the relationships between IQ and EF are different according to the genotypic subtype. METHOD: Twenty individuals with PWS and mild-to-moderate IQ (standard scores between 55 and 90, age range 19 and 49 years old, SD = 28.1) were administered an ecological battery of executive functioning (behavioural assessment of dysexecutive syndrome, BADS, adapted from Wilson et al. (1996) Behavioural Assessment of the Dysexecutive Syndrome. Thames Valley Test Company: Bury St Edmunds, UK.). The BADS contains six tests evaluating EF. The sample comprised 14 deletion subtype and six maternal uniparental disomy (m-UPD) subtype. RESULTS: Behavioural assessment of dysexecutive syndrome scores were below the level of the standardized healthy populations of the battery and equivalent to those of the neuropathological standardized population. Most scores on EF tasks were relatively highly correlated with Full Scale and Verbal IQs but were not significant or moderately correlated with Performance IQ. Lastly, underlying differences were found in scores on two EF tasks (the Rule Shift Card and the Zoo Map subtests) between the deletion and m-UPD subtypes. DISCUSSION: These data suggest a deficit of executive functioning in PWS that is linked more with verbal skills than performance skills. They also suggest that the impact on executive functioning may differ according to the genotype.
  Journal of Applied Research in Intellectual Disabilities 04/2013;
• Article: Efficacy of the HealthMatters Program Train-the-Trainer Model.

  Beth Marks, Jasmina Sisirak, Yen-Ching Chang
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  ABSTRACT: BACKGROUND: This study examines the efficacy of a staff-led, health promotion intervention entitled HealthMatters Program: Train-the-Trainer Model to improve health among adults with intellectual disabilities. While data support the benefits of health promotion for adults with intellectual disabilities in controlled settings, little research documents strategies to improve health and health behaviours in settings in which people work and live. METHODS: Thirty-four staff in community-based organizations (CBOs) participated in an 8-h training to start a 12-week health promotion programme for clients with intellectual disabilities. Participants with intellectual disabilities (n = 67; aged 30 and older) were randomized into an intervention (12-week exercise and health education programme) or control group. RESULTS: Intervention group showed significant improvements in health status, knowledge, self-efficacy, and fitness. CONCLUSION: Results support the efficacy of a HealthMatters Program in CBOs to improve health among adults with intellectual disabilities. A need exists for CBOs to include health promotion in their mission and vision statement and job descriptions.
  Journal of Applied Research in Intellectual Disabilities 04/2013;