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  Subjects -> DISABILITY (Total: 103 journals)
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Journal of Intellectual Disabilities
Journal Prestige (SJR): 0.295
Citation Impact (citeScore): 1
Number of Followers: 40  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1744-6295 - ISSN (Online) 1744-6309
Published by Sage Publications Homepage  [1176 journals]
  • Bias in assessment of co-occurring mental disorder in individuals with
           intellectual disabilities: Theoretical perspectives and implications for
           clinical practice

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      Authors: Arvid Nikolai Kildahl, Hanne Weie Oddli, Sissel Berge Helverschou
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Influence from bias is unavoidable in clinical decision-making, and mental health assessment seems particularly vulnerable. Individuals with intellectual disabilities have increased risk of developing co-occurring mental disorder. Due to the inherent difficulties associated with intellectual disabilities, assessment of mental health in this population often relies on a different set of strategies, and it is unclear how these may affect risk of bias. In this theoretical paper, we apply recent conceptualisations of bias in clinical decision-making to the specific challenges and strategies in mental health assessment in intellectual disabilities. We suggest that clinical decision-making in these assessments is particularly vulnerable to bias, including sources of bias present in mental health assessment in the general population, as well as potential sources of bias which may be specific to assessments in this population. It follows that to manage potential bias, triangulating information from multi-informant, multi-method, interdisciplinary assessment strategies is likely to be necessary.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2023-01-28T03:37:34Z
      DOI: 10.1177/17446295231154119
       
  • Bullying and intellectual disability from the perspective of students

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      Authors: Esther Vela Llauradó, Ana López Estévez
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Bullying has been a recurrent phenomenon throughout the history of education. Among those most vulnerable are those with intellectual disabilities who tend to suffer greater levels of victimisation. The purpose of this research is to analyse the prevalence of bullying of students with intellectual disability in ordinary schools compared to special education schools. The project used a nonexperimental, descriptive and correlational methodology with a sample of 99 students who completed the validated European Bellying Intervention Project Questionnaire measurement tool. The results show that the majority of students who were victimised by bullies left their ordinary school during secondary education. Within ordinary schools, students with disabilities are more likely to experience bullying in the role of victim while in special education schools the most frequent role is that of observer.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2023-01-23T05:34:55Z
      DOI: 10.1177/17446295231154109
       
  • “The change was as big as night and day”: Experiences of professors
           teaching students with intellectual disabilities

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      Authors: Gavin W. Watts, Eric J. López, Mariya T. Davis
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Since the inception of the Higher Education Opportunity Act in 2008, there has been an increase in the number of post-secondary education institutions in the United States that have established inclusive postsecondary programs for individuals with intellectual disabilities to attend college and achieve higher levels of employment. Previous studies have investigated the development and outcomes of these programs, however, less has been explored related to professors' experiences and perceptions regarding this unique student population, particularly within Hispanic Serving Institutions (HSI). The current study focused on professors teaching inclusive courses within a new Comprehensive Transition and Postsecondary Program at a HSI and aimed to identify their perceptions and experiences related to instructing students with intellectual disabilities. Six professors participated in pre- and post-semester in-depth interviews. Findings from applied thematic analysis included: (a) barriers to success; (b) academic supports and strategies; (c) successful outcomes and (d) considerations for future, related programming.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2023-01-12T07:33:58Z
      DOI: 10.1177/17446295221148791
       
  • Different types of combined training programs to improve postural balance
           in single and dual tasks in children with intellectual disability

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      Authors: Hiba Kachouri, Ghada Jouira, Rabeb Laatar, Rihab Borji, Haithem Rebai, Sonia Sahli
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The study explored the effects of two combined training (Strength-Proprioceptive versus Cognitive-Balance) programs on postural balance during single-task and dual-task conditions in children with intellectual disability. The postural balance and the second cognitive-task performances were evaluated before and after 8-week of training in two groups: Strength-Proprioceptive Group (n = 12) and Cognitive-Balance Group (n = 10). Results showed that, in both groups and regardless of the training effect, the postural balance performance was significantly (p < 0.05) altered in the dual-task condition compared to the single-task one. After-training session, postural balance performance was improved significantly (p < 0.001) for all task conditions. After training session, the second cognitive-task performance was improved in the Strength-Proprioceptive Group (p < 0.001) and Cognitive-Balance Groupe (p < 0.05). In conclusion, the combined training programs, Strength-Proprioceptive and Cognitive-Balance, improved postural balance performance in single-task and dual-task conditions in children with intellectual disability.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-12-26T10:53:32Z
      DOI: 10.1177/17446295221148585
       
  • Understanding quality of life in people with complex and multiple
           communicative disabilities: A narrative overview of the empirical research
           literature

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      Authors: Nina Wolters-Leermakers, Kim J. H. M. Van den Bogaard, Merel Prins
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The fundamental characteristics of quality of life (QoL) are considered the same for all people. However, the relative importance of QoL domains may vary for specific populations. No studies have focused on understanding QoL for people with intellectual disabilities with additional communicative disabilities (developmental language disorder or hearing impairment), who experience complex and multiple communicative disabilities (CMCD). This study provides a narrative overview of QoL domains and indicators for this population, highlighting the role of communication. The 16 selected studies proved to be heterogeneous in study design, objective and conceptualization of QoL. The eight domains of QoL by Schalock and Verdugo (2002) are recognized, but few studies specify the importance of communication related to QoL for people with CMCD. The current overview attempts to emphasize not only the indirect role of communication for every QoL domain, but also the importance of acknowledging communication as a prerequisite for QoL in general.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-12-14T02:22:57Z
      DOI: 10.1177/17446295221146849
       
  • Perceived Impact of the COVID-19 Pandemic on Adults with Intellectual and
           Developmental Disability: A Qualitative Study

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      Authors: Kristina N. Randall, Georgia L. McKown
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The current study examined the impact that the COVID-19 pandemic and resulting restrictions have had on individuals with intellectual and developmental disability. Semi-structured focus groups were conducted to collect data from participants who attended day programming by local community agency. Results indicate that the COVID-19 pandemic and its safety restrictions impacted participants’ knowledge of the disease, programming and work, relationships, activities, and emotions in ways that were both similar to and different from other findings in other populations. Implications of these findings for research and practice are discussed.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-12-14T02:10:38Z
      DOI: 10.1177/17446295221146352
       
  • Using a hospital passport from the perspective of adults with intellectual
           

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      Authors: Freda McCormick, Lynne Marsh, Laurence Taggart, Michael Brown
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This article explores the experiences of the use of the Regional Health and Social Care Hospital Passport (Regional Hospital Passport) in Northern Ireland from the perspectives of adults with intellectual disabilities, family carers and health professionals. From semi-structured interviews three themes emerged: usefulness; facilitators; and barriers to the use of the Regional Hospital Passport. There were clear benefits of the Hospital Passport when used across hospital services and clinical practice settings such as dental and General Practices. There was participant agreement that communication and the person-centred care experiences were enhanced. Findings suggest that providers of health and social care services need to take greater responsibility and accountability for ensuring Regional Hospital Passports are promoted and used across all settings. There is a requirement to develop the wider use and uptake of hospital passports to support adults with intellectual disabilities, with potential for use with other patient groups.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-12-12T08:04:53Z
      DOI: 10.1177/17446295221145996
       
  • Covid 19 Pandemic Experiences Among Caregivers of Persons with
           Intellectual Disability

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      Authors: Mousumi Bhaumik, Yashvinder Kapil, Jayanthi Narayan
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      An online survey on experiences of 47 caregivers of persons with intellectual disability during COVID 19 pandemic was carried out to find out their experiences, with the aim to understand the focus areas of challenges, so as to organise need-based support systems. A validated questionnaire was used to collect data. The participants belonged to different states of India with varied socio-economic backgrounds. The results revealed that most of them experienced challenges in supporting persons with intellectual disability. Many found online classes beneficial, while some caregivers had difficulty in keeping the person occupied or managing challenging behaviour. Some caregivers were happy to get more time to spend with the person with intellectual disability at home. The outcome of this study suggests that irrespective of the background, the families faced challenges, the needs were varied and therefore specific efforts are to be taken to support the families so that they are prepared.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-12-09T08:30:39Z
      DOI: 10.1177/17446295221140178
       
  • The desire for parenthood among individuals with intellectual disabilities
           : systematic review

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      Authors: Tamara Guénoun, Aziz Essadek, Christophe Clesse, Marion Mauran-Mignorat, Estelle Veyron-Lacroix, Albert Ciccone, Barbara Smaniotto
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background: This qualitative systematic review provides an overview of existing studies on the desire for parenthood of people with intellectual disabilities. Method: The scientific studies were identified following the Prisma protocol on 18 databases using keywords relating to sexuality and parenting. Results: Sixteen studies have been included and three categories identified: the obstacles and motivations to becoming a parent; parents’ decision making during pregnancy; and the social construction of a parental identity. The results from these studies show that people with intellectual disabilities have a genuine desire for children, which is repressed because of an unfavorable social context. Conclusion: Further clinical and participatory research is needed to better understand the singular modes of expression of people’s intimate desires and how to better accompany them on this issue.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-11-28T12:23:41Z
      DOI: 10.1177/17446295221141946
       
  • Enablers to enhance school-based adolescents with intellectual
           disabilities’ learning: A narrative approach

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      Authors: Rakgadi Grace Malapela, Gloria Thupayagale-Tshweneagae
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Society has always understood individuals with intellectual disabilities from a stance of deficiency, resulting in limited expectations and prospects for school-going adolescents with intellectual disabilities. The study used the social model of disability to explore teachers’ perceptions of enablers to enhance school-based adolescents with intellectual disabilities’ learning and took cognisance of a wave of policies aimed at including adolescents with intellectual disabilities in mainstream education. A qualitative narrative approach was used for the study. Using a narrative methodological framework, unstructured interview questions were posed to elicit teachers’ perceptions of enablers to enhance adolescents with intellectual disabilities’ learning. A non-probability purposive sampling method was used to select teachers working with school-based learners with intellectual disabilities. Five themes emerged from the analysis: therapeutic setting; learners’ resilience; parental support; teaching strategies; and community involvement as enablers for enhancing learning for adolescents with intellectual disabilities. Policy implications are also provided in the study.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-11-25T04:50:23Z
      DOI: 10.1177/17446295221141947
       
  • Facilitators and impediments in inclusive education for students with
           intellectual developmental disability: Perceptions of school staff and
           parents in Israel

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      Authors: Tali Heiman, Gilada Avissar
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Students with intellectual developmental disability (IDD) may have impairments in conceptual, social, and daily life areas that will require support when these students are included in mainstream settings. In order to examine the facilitators and impediments involved in inclusion of students with IDD in regular schools in Israel, we interviewed six parents of students with IDD who were enrolled in inclusive classes, five teachers of inclusive classes, one teaching assistant and two school principals. Analysis of the interview transcripts revealed the perceptions regarding the included students, by their parents and the school staff. The school staff perceived family involvement and the connection between them and the parents as the most important. Parents perceived the possibility of studying in an inclusive class as an opportunity for social integration and scholastic advancement. All the participants indicated the social aspect as crucial to the inclusion of students with IDD.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-31T09:16:27Z
      DOI: 10.1177/17446295221136355
       
  • Sexual health and safety of adolescents with intellectual disability:
           Challenges and concerns among special educators in India

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      Authors: Vaishnavi Jeyachandran, S P Divya Ranjelin, Aneesh Kumar
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Sexual health education among adolescents with intellectual disabilities is an area of concern among parents and educators. Special educators play a vital role in teaching sexual health and safety to their students with disabilities. The present study explores special educators' concerns in teaching sexual health among adolescents with intellectual disabilities. The participants included 35 special educators working with adolescents with intellectual disabilities in India. Summative content analysis of the data collected using a semi-structured interview schedule highlights the neglect of the issues related to sexual health among adolescents with disabilities. Special educators reported the challenges in providing sexual health education. Teachers lacked skills in imparting sexual health education. Developmentally and culturally appropriate sexual health education can help adolescents with a disability learn healthy life skills. The paper emphasizes the need for professional support and training among special educators on sexual health education.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-27T01:38:38Z
      DOI: 10.1177/17446295221136224
       
  • Concerns and needs of people with intellectual disabilities and their
           caregivers during the COVID-19 pandemic in Japan

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      Authors: Sawako Furukawa, Nobutoshi Nawa, Yui Yamaoka, Takeo Fujiwara
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundPeople with intellectual disabilities (IDs) and their caregivers face difficulties during the COVID-19 pandemic. However, limited studies have comprehensively investigated their challenges, especially in Japan. We aimed to clarify the concerns and needs of people with IDs and their caregivers during the COVID-19 pandemic in Japan.MethodFrom March to August 2021, 27 in-depth interviews were conducted with principal caregivers of people with moderate to profound IDs in Japan. We then transcribed the interviews and conducted deductive coding using predetermined codes focused on their daily life difficulties. Inductive coding was used to ensure that no important themes were overlooked.ResultsWe found four concerns and four needs among people with IDs and their caregivers as significant themes.ConclusionsOur results provide useful information for supporting people with IDs and their caregivers, especially among those who need medical or social care in accordance with the infection control and social-distancing policies.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-26T11:45:13Z
      DOI: 10.1177/17446295221135274
       
  • The challenges of mental health of staff working with people with
           intellectual disabilities during COVID-19––A systematic review

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      Authors: Yaohua Chen, Andrew P. Allen, Marianne Fallon, Niamh Mulryan, Philip McCallion, Mary McCarron, Fintan Sheerin
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundThe COVID-19 pandemic has posed a great risk to the mental health of health workers (HWs). There are likely to be particular concerns for staff working with adults with an intellectual disability, where infection control may be more challenging.MethodWe conducted a systematic review of original research examining the mental health of HWs working with people with intellectual disability, published between March 2020 and July 2021.ResultsFive original research studies were included. A high proportion of HWs working with people with intellectual disability reported having had poor mental health including stress, anxiety, and depression. This manifested in similar patterns as for other HWs and also some specific patterns seen as the need to manage increased rates of mental health issues of the people they support. Sources of support and resilience were also identified.ConclusionThe support system should target risk factors, answer unmet needs, and build resilience. More research is also required on the ongoing and long-term effects.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-26T08:11:02Z
      DOI: 10.1177/17446295221136231
       
  • Adverse events and contradictory effects of benzodiazepine in a case with
           intellectual disability and challenging behaviour

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      Authors: Ulrich Elbing, Sebastian Appelbaum, Thomas Ostermann
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study aims to contribute to the knowledge about lacking or contradictory effects of benzodiazepine on hyperaroused or aggressive behaviour in persons with intellectual disability (ID). We conducted a retrospective and natural case study in a person with mild ID and multiple adverse childhood experiences (ACE), using routine diary data consisting of 275 days including 113 consecutive days under benzodiazepine medication. The medication effects were documented as “calm / relaxed”, “fretful / distressed” and “sleep / doze”. Transitions between these were modelled using Markov chains. Differences in transitions were analysed using Chi-Square test for homogeneity. The results show a significantly reduced stability of mood and increased distressed behaviour under benzodiazepine. This is in line with reports about the effects of psychotropic medication in patients with ID and challenging behaviour. Besides other influences on unexpected medication effects, a possible dissociative identity disorder is discussed as an additional explanation.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-25T07:22:18Z
      DOI: 10.1177/17446295221134420
       
  • Development and implementation of a longitudinal clinical database for
           down syndrome in a large pediatric specialty clinic: Methodology and
           feasibility

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      Authors: Nicole T. Baumer, Margaret A. Hojlo, Angela M. Lombardo, Anna L. Milliken, Katherine G. Pawlowski, Sabrina Sargado, Cara Soccorso, Emily J. Davidson, William J. Barbaresi
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Down syndrome (DS) is a complex condition associated with multiple medical, developmental, and behavioral concerns. A prospective, longitudinal clinical database was integrated into a specialty Down Syndrome Program, with the goals of better understanding the incidence, course, and impact of co-occurring medical, neurodevelopmental, and mental health conditions in DS. We describe the process of developing the database, including a systematic approach to data collection and database infrastructure, and report on feasibility, challenges, and solutions of initial implementation. Between March 2018 and November 2021, data from 842 patients (ages 4.8 months to 26 years) was collected. Challenges included caregiver form completion as well as time and personnel required for successful implementation. With full integration into clinical visit flow, the database proved to be feasible. The database enables identification of patterns of development and health throughout the lifespan and it facilitates future data sharing and collaborative research to advance care.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-15T11:00:15Z
      DOI: 10.1177/17446295221133874
       
  • Building high-quality interpersonal staff-client relationships with people
           with severe to profound intellectual disabilities and challenging
           behavior: Insights of professionals and relatives

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      Authors: Maaike Hermsen, Rianne Simons, Hennie van Veen, Angela Prudon, Lina Rooijackers, Roy Otten, Renske Koordeman
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background: Staff-client relationships impact the quality of support and life of people with severe to profound intellectual disabilities and challenging behavior, but are challenging to build due to clients’ intense, complex and varying support needs. The present study explores the perspectives of professionals and relatives on what affects these interpersonal relationships. Method: 17 professionals and 11 relatives participated in focus groups and interviews. Data collection and analysis was performed in collaboration with a co-researcher. Data were synthesized thematically. Results: Interpersonal relationships constituted equivalence, striving for mutual understanding, trust and exploring clients’ potential. The combination of staff characteristics (enthusiasm/passion, patience, resilience, creativity/humor, flexibility) and expertise (knowledge, vulnerability/sincerity, self-reflection) enabled staff to build these relationships. The importance of involving relatives was addressed. Contextual influences included the team (cooperation, flexibility, culture), organization (cooperation, boundary conditions) and setting (predictability, interior/atmosphere). Conclusions: The findings make practical knowledge explicit and scientifically underpinned for this specific population.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-06T01:29:49Z
      DOI: 10.1177/17446295221131443
       
  • Assessing the effectiveness of a comprehensive menstrual health education
           program for preadolescent girls with intellectual disability and high
           support needs in Japan

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      Authors: Satoko Tsuda, Satoshi Takada
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The menarche age in girls with intellectual disability and high support needs (HSN) is approximately the same as in girls with typical development. However, there is no clear teaching procedure for menstrual hygiene management (MHM) skills before menarche. This study examined whether a menstrual education program that focuses on visual support affects the MHM skills of girls with intellectual disability/HSN. The study comprised 11 preadolescent girls with intellectual disability/HSN in their pre-menarche age. They were asked to change napkins on a doll three times: before, immediately following, and one month after attending the program. Fifteen MHM items were measured. The participants’ scores were significantly higher after attending the program. There was no significant difference in the mean scores for each of the 15 items among the levels of intellectual disability. The program that utilized visual materials was effective, and the effect was not influenced by age or intellectual level.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-03T01:43:45Z
      DOI: 10.1177/17446295221130423
       
  • Specific personality traits and psychosocial adjustment in people with
           intellectual disability

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      Authors: Michal Gacek, Lukasz Krzywoszanski
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      In this study we examined how specific personality traits are related to psychosocial adjustment in people with intellectual disability. We studied 73 students with mild intellectual disability and 25 students with moderate intellectual disability who attended special schools in Poland. Personality traits were assessed with the Revised Edward Zigler-Yale Questionnaire (EZPQ-16R) and to assess adjustment we used a total-difficulties score in Strengths and Difficulties Questionnaire (SDQ). We hypothesized a predictive relationship between the specific personality traits and adjustment. The relation between personality and adjustment was stronger in people with moderate intellectual disability than in people with mild intellectual disability. In students with moderate intellectual disability the relation between personality and adjustment was significant for each of the studied traits and in students with mild intellectual disability it was significant for negative-reaction tendency, and assignment alacrity. Obtained results indicate that specific traits are important to adjustment of people with intellectual disability.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-10-01T01:41:33Z
      DOI: 10.1177/17446295221130418
       
  • Family factors associated with physical activity in children with
           intellectual disability: A systematic review

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      Authors: Yaru Hao, Rizal Razman
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This systematic review aimed to explore the influence of family factors on physical activity in children with intellectual disability. How and what family factors that specifically influence physical activity has not been compiled and reviewed previously. In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, a systematic search was performed for articles published in English and Chinese without any year limits in six databases. Ten studies met the eligibility criteria and were included in the review. All studies were qualitatively integrated to identify and compare positive and negative family factors. A total of 1135 participants, of which 497 were children with intellectual disability while the other 638 participants were family members (parents, siblings and caregivers). The family factors of 6 themes and 18 sub-themes (10 positive, 7 negative and 1 inconclusive factors) were extracted. Overall, these results highlight the importance of encouragement, support and involvement by family members, concurrently it points out that parental psychological factors, socioeconomic status, responsibilities and electronic devices could both promote and hinder engagement in physical activity for children with intellectual disability. The findings accentuate the role of the family unit in helping determine the activity levels of children with intellectual disability. Future studies should include a wider range of participants and be longitudinal in nature, utilizing more accurate monitoring tools.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-09-29T09:36:01Z
      DOI: 10.1177/17446295221130913
       
  • Correlates of Social Participation of Adults with Intellectual and
           Developmental Disabilities

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      Authors: Iulia Mihaila, Kelly Hsieh, Kruti Acharya
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Social participation has been linked to healthy aging, yet little is known about social participation during extended periods of time for adults with intellectual and developmental disabilities. The social participation of 777 adults with intellectual and developmental disabilities (aged 18-77 years), during a 4-year period, was examined. Sociodemographic, physical, and behavioral health-related correlates of engagement in social participation were investigated. Findings indicated that the majority of adults with intellectual and developmental disabilities engaged in at least a moderate level of social participation during the 4-years. Employment status, physical health, and Special Olympics participation were associated with a higher level of social participation. Findings have implications for supports and services seeking to promote social participation opportunities for adults with intellectual and developmental disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-09-29T03:30:06Z
      DOI: 10.1177/17446295221130556
       
  • Gynecological Care for Women With Intellectual Disabilities: A Brazilian
           Study

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      Authors: Tainá de Mattos Leão, Raquel Barbosa Paula Soares, Cesar Augusto Capellari, Renato Nisihara
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      We aimed to identify the main challenges in the gynecological care and management of patients with intellectual disability by gynecologists. Gynecologists answered to online questionnaires about situations in which the professional reports their confidence in caring for patients with intellectual disability. Were studied 143 responses, 75% women. Among them, 53.8% felt apprehensive to conduct a routine gynecological screening, 60% were confident in advising about contraceptive services and examining the genitals. The greatest difficulty was indicating drugs to suppress menstruation and managing patients with severe intellectual disability. The female doctors were more prepared in the care of disability patients and recent certified gynecologists were more insecure. The main difficulty was time for examinations (39.2%) and the main solution was to improve medical training (64.2%). The main challenges of the gynecologist included the amount of time needed to provide clinical services, the lack of knowledge and skill; and ethical concerns.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-09-03T12:25:23Z
      DOI: 10.1177/17446295221123871
       
  • Validity and reliability of the persian version of the world health
           organization quality of life disabilities module

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      Authors: Nasibe Sorkhi, Isa Akbarzade, Saharnaz Nedjat, Mohammad Khosravi, Maryam Nazemipour, Amir-Hossein Memari, Mohammad Ali Mansournia
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study aimed to assess the validity and reliability of the world health organization quality of life questionnaire for people with intellectual disability (WHOQOL-DIS-ID). This was a cross-sectional study of 118 adults with intellectual disability. Internal consistency and temporal reliability were evaluated using Cronbach's alpha and intraclass correlation coefficient (ICC), respectively. Construct validity of the structure was assessed using confirmatory factor analysis. Multiple linear regression analysis was performed to determine the factors associated with the quality of life. Cronbach's alpha for all, but not for discrimination area, as well as ICC for all questions except for 23 and 6, were higher than 0.7. The variables such as periodic check-up, number of friends, entertainment outside the home, parental separation, physical activity, unmet needs score, caregiver's mental health status, and available facilities were the predictors of QOL. The Persian version of the WHOQOL-DIS-ID shows acceptable validity and reliability.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-09-01T07:56:37Z
      DOI: 10.1177/17446295221123867
       
  • Evaluation of factors affecting body mass index of children with
           intellectual disability

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      Authors: Özlem ÖZTÜRK ŞAHİN, Aysel TOPAN, Zeynep AKÖZLÜ, Tuğçe KOLUKISA
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study was conducted to evaluate the BMI of the children with intellectual disability and the factors affecting their BMI. This descriptive and cross-sectional study was carried out between March 2016 and April 2016 in Turkey and consisted of 135 children. Children's anthropometric measurements were and their BMI values were calculated. Categorization of children by BMI percentile according to AAP reference values was performed. There was a significant difference between the BMI categories of the children (p < 0.05) and the education level of children’s father (x2 = 8.960; p = 0.028), the degree of intellectual disability (x2 = 16.113; p = 0.008), the presence of other disabilities (x2 = 22.013; p = 0.000), type of disability (x2 = 21.359; p = 0.001), the nutrient intake (x2 = 38.935; p = 0.000) and the presence of nutritional problems (x2 = 7.687; p = 0.042). Father's education level, children's degree of disability, child’s having presence of other disabilities, child’s being dependent in the view of nutrient intake, and child’s having nutritional problems were determined as factors affecting BMI.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-09-01T06:30:53Z
      DOI: 10.1177/17446295221123866
       
  • Is epilepsy related to psychiatric disorders in people with intellectual
           disability' A systematic review

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      Authors: Carlos Peña-Salazar, Miqueu Alfonso-Ramos, Paula Arroyo-Uriarte, Antoni Serrano-Blanco, Ignacio Aznar-Lou
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The prevalence of psychiatric disorders in people with Intellectual Disability (ID) is statistically higher than in the general population. There is a lack of consensus on the role that epilepsy plays in psychiatric disorders in people with ID. We carried out a systematic review of articles published between 1960 and 2022, focusing on high-quality, case-control original research studies that only included adult populations. The primary outcome was the prevalence of psychiatric disorders in people with intellectual disability with and without epilepsy. Six articles were finally included. Results were varied; some reported a statistical increase, whereas others did not find any statistical difference. Due to the current controversy on the role of epilepsy in psychiatric disorders in people with ID and the small number of publications on the topic, we cannot affirm a relationship between epilepsy and psychiatric disorders in people with ID.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-08-04T05:20:32Z
      DOI: 10.1177/17446295221116506
       
  • Early numeracy profiles in young children with intellectual disabilities:
           The role of cognitive functions

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      Authors: Garyfalia Charitaki, Anastasia Alevriadou, Spyridon-Georgios Soulis
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Exploring individual differences and looking beyond averaged parameters of early numeracy in young children with mild intellectual disabilities has become an area of interest to many researchers worldwide. This study aimed to identify the different profiles of early numeracy skills in young children with mild intellectual disabilities. For this purpose, we assessed early numeracy through Utrecht early numeracy test and learning aptitude through Detroit Test, in a sample of 135 children diagnosed with intellectual disabilities. The mean of their mental age was 5:09 (years:months). Two-step cluster analysis identified four homogenous groups of children with distinct early numeracy profiles as follows:C1 were fluent in relational and numerical skills up to 20, C2 were fluent in relational skills and numerical skills up to 10, C3 had basic knowledge of relational skills and inconsistent numerical skills up to 10 and C4 had inconsistent relational skills and numerical skills. Results are discussed with reference to their educational implications.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-08-02T03:12:50Z
      DOI: 10.1177/17446295221117021
       
  • Communication partners experiences of communicating with adults with
           severe/profound intellectual disability through augmentative and
           alternative communication: A mixed methods systematic review

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      Authors: Edina Hanley, Anne-Marie Martin, Caroline Dalton, Elaine Lehane
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      People with severe/profound intellectual disability experience challenges in communicating and require their communication partners to adapt to their means of communication. Augmentative and Alternative Communication (AAC) is recognised as a potential means to meet their communication needs. Interventions need to be aimed at both the individual and their communication partners. We conducted a mixed methods systematic review of the literature to synthesise evidence on communication partners experience of communicating with adults with severe/profound intellectual disability through AAC. Eight publications met the inclusion criteria, they underwent thematic synthesis where four themes emerged. A shared commitment to communication partnership is fundamental for the effective and efficient use of AAC. However, there was a disconnect between communication partners perceptions of their roles and responsibilities. This review prompts further research to explore communication partners perceptions of their roles and responsibilities in the use of AAC with people with severe/profound intellectual disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-07-19T02:08:57Z
      DOI: 10.1177/17446295221115914
       
  • A model for fostering community capacity to support adults with
           intellectual disabilities who engage in challenging behaviour: A scoping
           review

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      Authors: Laura Mullins, Victoria Scott
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Developmental support agencies support many adults with intellectual disabilities in the community. Unfortunately, these adults often exhibit high rates of challenging behaviour, which present significant pressures on these service providers. Agencies need to develop effective means of increasing their capacity to provide quality support. Previous systematic reviews found that training staff in positive behaviour supports can improve outcomes; however, the factors facilitating training’s effects, long-term effectiveness, and outcomes for service users have yet to be determined. We conducted a scoping review of 98 journal articles and book chapters to develop a model for fostering capacity development drawing from Organizational Behaviour Management and Knowledge Translation theories. Some relevant factors include features of the inner and outer organizational contexts, training approaches (e.g., behavioural skills training & in-situ coaching), ongoing support and feedback. This model may lead to more effective and enduring treatment programs and improved support for adults with intellectual disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-07-16T10:28:27Z
      DOI: 10.1177/17446295221114619
       
  • Irish social policy to family carers of adults with an intellectual
           disability: A critical analysis

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      Authors: Damien Brennan, Maureen D’eath, Nikki Dunne, Mary-Ann O’Donovan, Philip McCallion, Mary McCarron
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This paper explores contemporary Irish social policy for family caregivers with specific focus on the dynamic between the individual, the family and the state in terms of the social contract for care provision for people with intellectual disability. Drawing from Bacchi’s analytical framework (Bacchi, 2009), the Irish National Carers’ Strategy is interrogated specifically with regards to how it frames and assumes the social contract for family care provision for adults with an intellectual disability. We suggest that Irish social policy constructs family caregiving as the assumed natural and neutral point of departure for providing care within society, and this constructed identify is subsequently reinforced through the provisions contained with the policies themselves that seek to support such caregivers. A fundamental reconsideration of the social contract for such care provision and support with society would appear warranted.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-07-15T02:20:32Z
      DOI: 10.1177/17446295221115296
       
  • An integrated practical placement programme for students with disability:
           A pilot study

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      Authors: Debra Kiegaldie, Louise Shaw, Stuart Hunter, Jan Davis, Helen Siddel, Mike O’Brien
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Supported work internship programmes for young adults with disability are an evidence-based model, leading to greater employment outcomes. This mixed methods pilot study evaluated the experiences of students, supervisors and a project coordinator, who participated in an Integrated Practical Placement (IPP) programme for students with disability in Australia. Intervention students (n = 10) completed 3, 9-week rotations, and accessed personal placement support and employment coaches. Comparison students (n = 38) completed 3, 2-week placements without additional support. Intervention students perceived significantly greater initial changes in work skills (p < 0.01) and work readiness (p < 0.05). Intervention students reported development of communication and self-organisational skills and stressed the value of staff support. Post programme 70% of intervention students gained employment, compared with 15.4% of comparison students. The findings suggest an evidence-based supported employment programme emphasising personalised assessment and training, could provide individuals with disability the required skills to enable successful employment.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-07-13T03:49:58Z
      DOI: 10.1177/17446295221114490
       
  • Social workers’ perceptions of assessing the parental capacity of
           

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      Authors: Jerry Norlin, Eva Randell
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      AimParental capacity is one of the main aspects assessed by social workers as part of child protection investigations. The aim of this study is to explore the social workers’ perceptions of assessing the parental capacity of parents with intellectual disabilities in child protection investigations.Design/methodologyFour focus group interviews were conducted with twelve social workers in May-October 2021. Data were analysed using an inductive, conventional qualitative content analysis.ResultsOne overarching theme, “Parental capacity in relation to the child’s needs was assessed, not disability of parents” was created. Three main categories and ten sub-categories were identified exploring the social workers’ perceptions of assessing parental capacity.ConclusionsThe study shows that social workers perceive the assessment of parental capacity in parents with intellectual disabilities as demanding and complex, in which the assessment of what is good enough is perceived as the most difficult task.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-07-12T12:06:28Z
      DOI: 10.1177/17446295221113717
       
  • Developing and evaluating a toolkit of strategies to support remote
           inclusive research teams

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      Authors: Jessica M. Kramer, Ariel Schwartz, Taye Hollack, Raine Myrvold, I-Ting Hwang, Beth Pfeiffer
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Research teams must collaborate with people with intellectual and developmental disabilities to identify effective and inclusive responses to COVID-19 and other public health emergencies. Collaborating remotely requires telecommunication and other technologies. We designed and evaluated a digital “Toolkit for Remote Inclusive Research” to provide research teams with evidence-informed strategies to make remote research accessible to and inclusive of people with intellectual and developmental disabilities. First, we completed a rapid scoping review to identify technology used by people with intellectual and developmental disabilities on collaborative research teams. Second, we designed a digital toolkit featuring 23 strategies identified in the review. Third, six inclusive researchers evaluated the toolkit. We illustrate how our team used these evidence-informed strategies during the past year to develop this and other tools to support inclusive research.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-28T06:42:09Z
      DOI: 10.1177/17446295221110390
       
  • Down syndrome: Parental experiences of a postnatal diagnosis

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      Authors: Fiona Mc Grane, Fiona Lynn, Joanne Balfe, Eleanor Molloy, Lynne Marsh
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundGlobally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this qualitative study aimed to explore the experiences of Irish parents receiving a postnatal diagnosis of Down syndrome.MethodA qualitative research approach was used through semi structured interviews. Eight parents of a baby diagnosed postnatally with Down syndrome participated in this study sharing their stories of their postnatal diagnosis experiences.ResultsFive overarching themes emerged using a descriptive thematic analysis; 1. prenatal screening, pregnancy and delivery; 2. how the diagnosis was delivered; 3. setting and emotional experiences; 4. moving on with the postnatal diagnosis and 5. Future recommendations from parents’ perspectives.ConclusionThis study highlighted the importance of the need for clinicians to ensure that partners are present at the time of the disclosure, that ample time is allocated and that verbal and written communications are provided to parents using less medical jargon when delivering the postnatal diagnosis of Down syndrome. These reasonable adjustments could alleviate parental anxiety at this critical juncture in their lives. Online resources and support forums were also identified as an integral support for families on discharge from the maternity centres and in the early months and years.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-14T08:18:23Z
      DOI: 10.1177/17446295221106151
       
  • A scoping review of clusters of multiple long-term conditions in people
           with intellectual disabilities and factors impacting on outcomes for this
           patient group

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      Authors: Claire Mann, Gyuchan T Jun, Freya Tyrer, Reza Kiani, Gemma Lewin, Satheesh K Gangadharan
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      People with intellectual disabilities (ID) are vulnerable to multiple long-term conditions (MLTC). However, in the UK, there are no individual strategies tailored for them. This study synthesised evidence on prevalence of MLTC in people with ID alongside risk factors, outcomes and preventative strategies. The scoping review used the tool Abstrackr to search retrieved articles from three bibliographic databases. Of 933 articles initially screened and further identified, 20 papers met our inclusion criteria. Our findings revealed significant data on prevalence of MLTC in people with ID across the studies, but very limited data on clusters or patterns of co-occurrence in this population. The majority of papers explored risk factors and strategies for prevention of MLTC, but far fewer compared outcomes by MLTC. The identified gaps in the literature indicate the need for further research to identify clusters of MLTC and tailored prevention strategies to reduce poor outcomes in this population.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-13T11:58:20Z
      DOI: 10.1177/17446295221107275
       
  • Physical health effects of sedentary behaviour on adults with an
           intellectual disability: A scoping review

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      Authors: Louise Lynch, Mary McCarron, Jessica Eustace-Cook, Éilish Burke, Phillip McCallion
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This literature review was designed to establish the effects of sedentary behaviour on the physical health of adults with an intellectual disability. Sedentary behaviour is defined as any waking behaviour characterized by an energy expenditure of ≤1.5 METs while in a sitting, lying or reclining posture. An extensive search was executed in six databases: EMBASE, Medline, CINAHL, PsycINFO, ASSIA and Web of Science. Following screening, 18 articles remained for inclusion in the review. A thematic analysis using the Braun and Clarke six step process resulted in the identification of seven broad health areas. Studies showed a prevalence of obesity, multimorbidity and metabolic syndrome as well as elevated levels of sedentary behaviour in adults with an intellectual disability. This literature review demonstrated that sedentary behaviour could be a contributor to the poor health which is common in adults with an intellectual disability. However to date the body of evidence does not confirm a cause-and-effect relationship.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-13T05:41:23Z
      DOI: 10.1177/17446295221107281
       
  • No ordinary adult life: Living conditions from the perspective of adults
           with intellectual disabilities

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      Authors: Õie Umb Carlsson, Päivi Adolfsson
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study focuses on the subjective experience of the living conditions of adults with intellectual disabilities as related to the Uppsala Quality of Life model (UQoL2). Eleven semi-structured interviews were conducted to study issues raised by people with intellectual disabilities. Study participants had their own home, either in an ordinary dwelling or group home. The findings show that the dependence on support in daily life infringes on the sense of adult social status and control of life. Staff and family had a mandate to define Quality of Life, which countered the possibilities of a life based on the preferences of those with intellectual disabilities. Knowledge about factors that affect living conditions, one of the social determinants of health, has implications for public health in general and the development of society’s efforts for people who are in lifelong dependence on support and service from others.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-11T02:25:37Z
      DOI: 10.1177/17446295221107284
       
  • Mindfulness for adults with autism spectrum disorder and intellectual
           disability: A pilot study

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      Authors: Helena Gandía-Abellán, Carmen Nieto, Carlos García-Rubio
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The present study aims to examine the effects of the MindfulTEA program, an Mindfulness-based Interventions (MBIs) specifically designed for adults with Autism Spectrum Disorder (ASD) and Intellectual Disability, to reduce behavioural problems. MBIs are effective in improving well-being in people with high-functioning ASD, but little is known about the impact of the MBIs on people with ASD and intellectual disability associated. Fourteen adults (age 18 to 44) with ASD and intellectual disability participated in the program. Results showed a significant decrease in self-injurious and aggressive/destructive behaviours after the MBI. Stereotyped behaviour did not show significant change. Results suggest that the MindfulTEA program could effectively reduce some types of behaviour problems in people with ASD and intellectual disability. MBIs could be a useful alternative to traditional behaviour management interventions for reducing behaviour problems in this population.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-08T06:04:54Z
      DOI: 10.1177/17446295221107283
       
  • Navigating the care of families with a child or children with autistic
           spectrum disorder

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      Authors: Professor Clare Harvey, Emeritus Professor Eileen Willis, Dr Janie Brown, Amy-Louise Byrne, Associate Professor Adele Baldwin, David Heard, Wendy Augutis
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The aim of this project was to better understand nurse navigators work with children and families who are living with severe autism spectrum disorder to achieve improved health and wellbeing outcomes. Nurse navigators were introduced into the public health sector in Queensland in 2016, with 400 navigators currently working across 16 health services in diverse geographic and demographic settings. Narrative inquiry was used to explore one nurse navigator’s journey working with children and families living with severe Autism. The challenges of rigid health systems to adapt to the requirements of children with special needs, particularly in relation to care in the emergency department and where interventional procedures are necessary were apparent. Nurse navigators can effectively co-ordinate the care of an extremely vulnerable patient cohort and provide essential advocacy in a health system that is rigid and lacking the flexibility to deal with individual needs.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-04T08:34:26Z
      DOI: 10.1177/17446295221106001
       
  • Patient safety and quality care for children with intellectual disability:
           An action research study

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      Authors: Natalie Ong, Brendan Loo Gee, Janet C Long, Jerzy Zieba, Gail Tomsic, Pankaj Garg, Caleb Lapointe, Natalie Silove, Valsamma Eapen
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Children with intellectual disability experience significant challenges in accessing and receiving high-quality healthcare leading to poorer health outcomes and negative patient experiences. Families of these children often report a need for healthcare staff to better understand, communicate, and collaborate for better care while staff acknowledge a lack of training. To address this, we utilised an action research framework with a pre- and post- survey to evaluate an integrated continuing professional development and quality improvement program combining strategies from education, behavioural psychology and quality improvement that was delivered in two departments within a tertiary children’s Hospital in Metropolitan Sydney in 2019-2020. Parents reported noticeable changes in the clinical practice of staff, and staff acknowledged and attributed their shift in behaviour to raising awareness and discussions around necessary adaptations. The program demonstrates a novel method for knowledge translation to practice and systems improvements.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-03T02:26:29Z
      DOI: 10.1177/17446295221104619
       
  • Examining the Impacts of the COVID-19 Pandemic on Service Providers
           Working with Children and Youth with Neuro-developmental Disabilities and
           their Families: Results of a Focus Group Study

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      Authors: David B. Nicholas, Wendy Mitchell, Jill Ciesielski, Arisha Khan, Lucyna Lach
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background: The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). Methods: We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service providers offering support to children/youth with NDD and their families. Results: Results highlight substantial service changes and challenges, as observed by service providers. Service closures and program delivery modification resulted in the rapid adoption of virtual services and reduced program delivery. Service providers have faced heightened workloads, personal weariness and ‘burn out’, and new levels of conflict at work, yet with little opportunity and support for self-care. Beyond challenges, new learning and growth have emerged, with heightened collaboration amongst organizations. Conclusion: Strains in service delivery during the pandemic have exposed programming and systems gaps, for which proactive capacity building is warranted and recommended.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-02T01:57:07Z
      DOI: 10.1177/17446295221104623
       
  • Using Attachment and Biobehavioral Catch-up with young children with
           developmental delays: A multiple-baseline trial of attachment,
           sensitivity, and cortisol

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      Authors: Ahmed Riaz Mohamed, Paula Sterkenburg, Joshua G. Yeatman, Esmé van Rensburg, Carlo Schuengel
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The Attachment and Biobehavioral Catchup intervention potentially offsets psychosocial risks facing dyads in which children have intellectual disability or developmental delays. In this single-case multiple-baseline study the efficacy of this intervention was tested across three such South African families. Maternal sensitivity, attachment security, and child affect regulation were measured weekly during a baseline and intervention period, using the Ainsworth Maternal Sensitivity Scales, Attachment Q-sort and salivary cortisol, respectively. Furthermore, post-intervention interviews invited parents’ and intervenors’ evaluations of the intervention. Visual analysis broadly indicated improvement in maternal sensitivity and attachment security across subjects over time following the introduction of the intervention, although randomisation tests were not statistically significant. Effects on affect regulation were not clearly observed and may have been influenced by case-specific variables. Parent-participants and intervenors also identified particularly helpful contributions from the intervention. Findings underscore the importance of individual-level effects evaluation, especially when implementing interventions outside the original population.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-06-01T05:18:06Z
      DOI: 10.1177/17446295221104614
       
  • Knowledge, Attitudes, and Practices Towards Fetal Alcohol Spectrum
           Disorder in New Zealand Educators: An Online Survey

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      Authors: Joanna Ting Wai Chu, Jessica C. McCormack, Samantha Marsh, Chris Bullen
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background:Fetal alcohol spectrum disorder (FASD) is a common form of developmental disability but may be poorly understood by professionals working with people with FASD. The aim of the research is to understand the FASD knowledge, attitudes, awareness, and practices among people employed by the education sector in Aotearoa New Zealand and identify gaps in knowledge. Methods: We conducted an online survey of New Zealand Education professionals. The survey focused on the following areas: Awareness of FASD; Knowledge and beliefs about FASD; Impact of FASD on professional practice; and Training needs. Results: Of the 419 participants, most had some knowledge of FASD and its effects on learning; however, there are still gaps that need to be addressed so educators can provide support to individuals living with FASD. Conclusion: There is a need to improve workforce capacity and develop guidelines that address the needs of front-of-line staff working with children with FASD in education settings.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-30T04:31:10Z
      DOI: 10.1177/17446295221104618
       
  • Perspectives of Adults without Disabilities on their Friendships with
           Individuals with Intellectual and Developmental Disabilities

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      Authors: Cynde Katherine Josol, Marisa H. Fisher, Lindsay S. Athamanah
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Friendships contribute to positive social outcomes such as the promotion of prosocial behaviors and social well-being and can lead to an overall healthy quality of life. Despite the importance of friendships, little is known about how individuals without disabilities develop and maintain friendships with individuals with intellectual and developmental disabilities. Using a phenomenological research design, the current study explored the lived experiences of 17 adults without disabilities who discussed the development and maintenance of their friendship with an individual with intellectual and developmental disabilities. Semi-structured interviews were conducted and subsequently collaborative, open coding was used to identify codes and themes across participants. Three main themes emerged related to 1) factors that facilitated friendship development; 2) factors that contributed to friendship maintenance; and 3) impacts of the friendship for both individuals with and without intellectual and developmental disabilities. Implications of the results are discussed as well as future directions for research.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-28T04:25:07Z
      DOI: 10.1177/17446295221104621
       
  • Family dynamics, trauma, and child-related characteristics: examining
           factors associated with co-occurring mental health problems in
           clinically-referred children with and without an intellectual (and
           developmental) disability

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      Authors: Shannon L Stewart, Hiten P Dave, Natalia Lapshina
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Psychiatric disorders are common in youth with intellectual and developmental disabilities. This is a vulnerable group of children whose behavioural problems often have more complicated care needs than other children, which can place a great deal of stress on their families. However, the association of family mental health issues, level of intellectual ability, and diagnostic co-morbidity in children is relatively under-studied. In the present study, we investigated the relationship among child diagnoses, family mental health problems, risk for self-injury, and disruption in care among children with (N = 517) and without (N = 517) intellectual and developmental disabilities. A negative binomial regression showed that mental health problems in multiple family members, self-injurious behaviour, and self-reported abuse/trauma was related to greater likelihood of provisional diagnoses of co-occurring psychiatric disorders in both a clinically referred sample and a sample with IDD. Implications for care-planning are discussed.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-18T06:40:34Z
      DOI: 10.1177/17446295221093967
       
  • Remote cognitive training for children with congenital brain malformation
           or genetic syndrome: a scoping review

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      Authors: Claudia Corti, Viola Oldrati, Fabio Storm, Alessandra Bardoni, Sandra Strazzer, Romina Romaniello
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Increased attention is arising on the delivery of remote cognitive interventions, which allow performing exercises in everyday settings, favouring rehabilitation continuity. The present study offers an overview of remote cognitive training programs for children with congenital brain malformation or genetic syndrome affecting the central nervous system, included in papers published in the time period 2011-2021. A total of 13 records was found and discussed including efficacy studies, feasibility studies and study protocols. Many studies have focused on a specific diagnosis, such as cerebral palsy, Down Syndrome, Fragile X Syndrome, while no or little evidence has been gathered on more rare diseases or brain malformations. Interventions were found to generate benefits on some cognitive functions, but problems with adherence were highlighted, especially due to excessive cognitive load from the training or clinical comorbidities. Conclusions remain tentative due to heterogeneity in training, study and patients characteristics, and methodological limitations of studies.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-18T06:12:45Z
      DOI: 10.1177/17446295221095712
       
  • Comparison of Menstrual Care Skills Training Programs Provided to Girls
           with Intellectual Disabilities By a Healthcare Professional and
           Caregivers: A Randomized Controlled Trial

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      Authors: Gamze Aktaş, Emine Öncü
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Objective: To compare the effectiveness of the training provided by the professional and caregivers in developing menstrual care skills of girls with intellectual disabilities. Methods: A randomized controlled trial was conducted with 22 moderate girls with intellectual disabilities randomly assigned to G-I and G-II. Both groups received training program using chaining technique and modeling on a doll and on itself for 8 weeks. Assessments were made on the 1, 15, 30 and 60 days. Results: The girls’ median age was 15 (14–18) years. Scores skill of menstrual care were significantly increased in both groups (p < .05; effect size = 0.61). G-I’s a pad placement and changing dirty pad skill scores were higher than G-II (p = 0.05; effect size = 0.44). Conclusion: The training process performing by caregivers can be affected by the complexity of the menstrual self-care skills. School-parents cooperation-based reproductive health programs may be facilitated the teaching of complex menstrual care skills of girls with intellectual disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-16T09:57:24Z
      DOI: 10.1177/17446295221101759
       
  • Qualitative Insights from A Novel Staff-Led Oral Health Champions Program
           Within a Residential Service For People With Intellectual and
           Developmental Disability

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      Authors: Nathan J Wilson, Zhen Lin, Margery Pithouse, Bonnie Morrison, Bashir Sumar, Ajesh George
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The oral health of people with intellectual and developmental disability is poorer than that of the general community. Any solution for people with intellectual and developmental disability living in residential services needs to include disability support workers (DSWs). Previous studies have used either didactic or train-the-trainer approaches to enhance DSW knowledge and skills. Taking a different approach, a novel program used DSWs as embedded oral health champions. This model provided educational opportunities for DSWs to learn about good oral health and then share with peers and provide benefits to people with intellectual and developmental disability that they support. Interviews with a sample of these champions were conducted and analysed using content analysis. Findings suggest that DSWs are capable of affecting change with the right type and depth of training, management and organisational support. A DSW-led champions model has merit, however requires ongoing expert support to help maintain and sustain benefits over time.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-12T06:08:34Z
      DOI: 10.1177/17446295221095654
       
  • Associations between executive functions, intelligence and adaptive
           behaviour in children and adolescents with mild intellectual disability

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      Authors: Sissel Gravråkmo, Alexander Olsen, Stian Lydersen, Jo Magne Ingul, Lucy Henry, Merete G Øie
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background: The purpose of this study was to explore the role of everyday executive functions in relation to intelligence and adaptive behaviour in children and adolescents with mild intellectual disability. Method: A group of children and adolescents, previously diagnosed with mild intellectual disability were assessed according to intelligence, everyday executive functions and adaptive behaviour. The association between everyday executive functions and intelligence was examined, and it was explored whether intelligence or everyday executive functions would best predict adaptive behaviour. Results: Adaptive behaviour was significantly predicted by executive functions, but not by intelligence. Nor was intelligence significantly related to everyday executive functions in this group. Conclusions: Although fundamental in diagnosing intellectual disability, intelligence cannot predict adaptive behaviour. Assessing everyday executive functions and adaptive behaviour, as well as acknowledging the strong association between them, provides valuable information in the process of optimizing developmental support for children and adolescents with mild intellectual disability.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-11T08:58:15Z
      DOI: 10.1177/17446295221095951
       
  • Reflections of Adult Children of Mothers with Intellectual Disability

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      Authors: Tammy Bachrach
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This multiple case study explores the phenomena of being raised by parents with intellectual disabilities from the adult child’s perspective. Autoethnographic data was collected from the author and 4 non-disabled adults who were raised by mothers who had intellectual disabilities. The significance of the parent’s disability, parent/child relationship and the social factors that either hindered or facilitated the family are discussed. This study found that the majority of the families were at risk of losing custody of their children and that extended family or support services protected the family unit and provided valuable support to the children. It was common for the participants to have additional responsibilities growing up. All of the adult children achieved typical adult outcomes. The adult children interviewed typically did not define their maternal relationships in terms of disability or limitations and all maintained a strong relationship with their mothers.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-11T02:29:16Z
      DOI: 10.1177/17446295221096930
       
  • Quality of life of Brazilian families who have children with Williams
           syndrome

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      Authors: Rafaela Catelan Martins Pereira, Aline Apis, Thamires Rosa dos Santos, Lucimar Retto da Silva de Avó, Rui Fernando Pilotto, Carla Maria Ramos Germano, Débora Gusmão Melo
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This cross-sectional and descriptive study examined the family quality of life (FQoL) among 72 Brazilian families who have children with Williams syndrome, a rare genetic disorder in which most individuals have an intellectual disability, usually mild. Data were collected using sociodemographic and clinical data forms and the Beach Center FQoL Scale. The overall FQoL score was 3.90 ± 0.45, below the limit of four points considered satisfactory. Families felt more satisfied with the family interaction (4.11 ± 0.57), parenting (4.07 ± 0.42), and disability-related support (3.94 ± 0.62) domains, and less satisfied with the family’s emotional (3.49 ± 0.73) and physical/material well-being (3.73 ± 0.74) domains. Paternal education, children’s cardiopathy and autonomy in activities of daily living explained 24.5% of the variance in the overall FQoL. Measures are necessary to improve the emotional and physical/material well-being of families to reduce the family burden. Monitoring the child’s cardiac condition and promoting independence in activities of daily living are also the main procedures.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-11T02:13:13Z
      DOI: 10.1177/17446295221079583
       
  • Support needs of older people with intellectual disabilities: An
           exploratory study among psychologists in the Netherlands

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      Authors: Marloes Thalen, Wietske MWJ van Oorsouw, Karin M Volkers, Petri JCM Embregts
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background: Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs. Method: A mixed-method design was conducted, in which 11 semi-structured interviews were held with psychologists to gain insight into the support needs of older people with intellectual disabilities. Results: The data provide an overview of the support needs of older people with intellectual disabilities in all quality-of-life (QoL) domains. Physical well-being, emotional well-being, interpersonal relationships and self-determination were identified as the most important domains for older people with intellectual disabilities. Conclusions: The findings of this study may guide the development of a specific training for support staff and constitute a valuable contribution to raising awareness among support staff concerning the broad range of support needs existing among older people with intellectual disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-09T07:24:39Z
      DOI: 10.1177/17446295211062399
       
  • Post-high school outcomes of students with autism spectrum disorder and
           students with intellectual disability: Utilizing predictive analytics and
           state data for decision making

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      Authors: Scott H Yamamoto, Charlotte Y Alverson
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study analyzed the post-high school outcomes of exited high-school students with intellectual disability and autism spectrum disorder from a southwestern U.S. state. A predictive analytics approach was used to analyze these students’ post-high school outcomes data, which every state is required to collect each year under U.S. special-education law. Data modeling was conducted with machine learning and logistic regression, which produced two main findings. One, the strongest significant predictors were (a) students spending at least 80% of their instructional days in general education settings and (b) graduating from high school. Two, machine learning models were consistently more accurate in predicting post-high school education or employment than were multilevel logistic regression models. This study concluded with the limitations of the data and predictive-analytic models, and the implications for researchers and state and local education professionals to utilize predictive analytics and state-level post-high school outcomes data for decision making.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-09T07:01:01Z
      DOI: 10.1177/17446295221100039
       
  • (Extra) ordinary parenting: Parents of children with disabilities in the
           context of disability stigma and pride

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      Authors: Jakub Niedbalski
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Introduction/backgroundThe research focuses primarily on how parents construct images of themselves and their children that diverge from the narrative of disability as a life tragedy and focus on emphasizing dignity and self-esteem.MethodsThe research was qualitative. A technique of an unstructured interview conducted with parents of people with intellectual disabilities was used to collect data. The analysis and interpretation were based on the procedures of the grounded theory.Results and conclusionParents talk about their children as a source of pride, pointing to positive social experiences, social relationships and interactions in the public sphere. At the same time, parents emphasized the painful and exhausting experience of dealing with various types of institutions, thus highlighting the negative role of stigma in their lives and those of their children. Parents resisted framing their children’s 'deficits' and their own lives in terms of mere tragedy or misfortune.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-09T01:56:23Z
      DOI: 10.1177/17446295221100037
       
  • Perceived health and wellbeing among community-dwelling older Australians
           with intellectual disability: A comparison with age peers

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      Authors: Stuart Wark, Rafat Hussain, Matthew P. Janicki, Marie Knox, Trevor Parmenter
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Data specifically comparing outcomes for people with and without intellectual disability is limited. This paper reports perceived health and wellbeing of older Australians resident in metropolitan and rural locations in New South Wales and Queensland. Respondents were community-residing individuals with intellectual disability and mainstream age peers [age ≥ 60]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-06T02:41:16Z
      DOI: 10.1177/17446295221100040
       
  • Young people with intellectual disability and the internet: Challenges and
           opportunities in qualitative research

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      Authors: Åsa Borgström
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Conducting qualitative research on young people with intellectual disability and the Internet poses methodological challenges as well as opportunities. Based on memos from a qualitative study, this article focuses on identified gaps related to the challenges of informed consent, access to Internet arenas and using stimulus materials. Opportunities, in terms of flexibility and relationships, are discussed and problematized. The discussion shows that researchers may need to move out of their comfort zone and try nonconventional methods of data collection. It is important to be creative and innovative but also to look after the rights and interests of participants. Furthermore, take a non-directive approach and assume young people with intellectual disability to be experts on their own lives. Finally, the power imbalance between a researcher and participant should be considered and the researcher should ask him-/herself which perspective he/she wishes to present or ‘whose side are we on'’
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-05T12:32:50Z
      DOI: 10.1177/17446295221095714
       
  • The quality of life of individuals with intellectual disability:
           Differences between Denmark and Japan

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      Authors: Mizuho Tatsuta, Norimune Kawai, Michio Ushiyama
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Despite recent developments in measurement tools to assess the quality of life of individuals with intellectual disability, little is known about the cultural aspects that affect their quality of life. This study examined the universal and cultural characteristics of the quality of life of individuals with intellectual disability in Denmark and Japan through a factor analysis of the Personal Outcomes Scale and analysing qualitative comments in both self-report and report-of-others components of the scale. Factor analysis and qualitative comments in self-report showed that personal development and self-determination, as well as well-being and social participation, were experienced as important components of quality of life in Denmark. Conversely, personal development and self-determination were less frequently mentioned in Japan. The findings reflect the general characteristics of quality of life in each culture and the current conditions of independence and available support for individuals with intellectual disability in Denmark and Japan.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-04T02:16:01Z
      DOI: 10.1177/17446295221088706
       
  • “Is it my job'” An exploratory qualitative analysis of medical
           specialists’ adaptation strategies when addressing the health needs of
           people with intellectual disabilities

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      Authors: Romina Rinaldi, Elise Batselé
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Access to equal healthcare is a priority for people with intellectual disabilities. Most studies have focused on primary care providers; however, the administration of inclusive healthcare also relies on medical specialists, who should be considered a specific group because their practice varies significantly in this regard. Semi-directive interviews were conducted with 12 medical specialists to explore their representations regarding the care of people with intellectual disabilities. An inductive thematic analysis was applied to the data. The results highlighted a significant heterogeneity between practitioners’ representations of people with intellectual disabilities in healthcare, current practices, and their perceptions and expectations in the process of ensuring quality care. This study highlights the importance of considering medical specialists’ awareness raising and training to handle consultations with people with intellectual disabilities. From a broader perspective, a clear political framework to guide healthcare practices at the national level should be developed.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-05-03T06:12:01Z
      DOI: 10.1177/17446295221095706
       
  • Music-based interventions for people with profound and multiple learning
           disabilities: A systematic review of the literature

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      Authors: Rosie Rushton, Lila Kossyvaki, Emmanouela Terlektsi
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Music is motivational, accessible and engaging for individuals with learning disabilities. Several systematic reviews have addressed the effects of music activity on people with learning disabilities; however, none has specifically reviewed the use of musical activity with people with profound and multiple learning disabilities.This review aimed to: 1. identify peer-reviewed studies and describe the characteristics of evidence-based musical activity used with people with profound and multiple learning disabilities and 2. evaluate and analyse the effectiveness of these music-based interventions and identify gaps within current research. A systematic search was conducted in April 2021 identifying seven peer-reviewed studies which included music-based interventions with at least one person with profound and multiple learning disabilities.Findings reveal the interventions varied in their frequency, duration and content. The outcome of most (n=6) interventions documented the development of the participants’ social skillset. Interventions were predominantly (n=6) implemented by facilitators with musical expertise. The diverse and novel nature of the reviewed studies highlights a need to expand and enhance research with this population.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-29T10:10:07Z
      DOI: 10.1177/17446295221087563
       
  • Tablet-Supported Self-Assessment in a Class for Students with Intellectual
           Disability

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      Authors: Lauri M. O. Räty, Tanja Vehkakoski, Raija A. Pirttimaa
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Self-assessment has been shown to have positive effects on students’ self-regulated learning strategies and academic achievement. However, self-assessment and self-assessment instruction are under-researched areas among students with intellectual disability. This data-driven qualitative study aimed at examining the self-assessment expressions students with intellectual disability documented in their learning diaries and how the teacher and teaching assistants used video recordings to facilitate students’ self-assessments in one Finnish special needs education class. The naturally occurring research data consisted of both students’ tablet-based learning diaries (N = 6) and video recordings of students’ self-assessment situations (N = 17). The results show that students’ self-assessment expressions varied from short and vague expressions to argumentative and reflective assessments. The use of video recordings served various functions, such as directing and instructing students, demonstrating assessment and providing feedback. The outcomes of this study demonstrate how the self-assessment practices of students with intellectual disabilities can be facilitated by using video.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-27T12:56:27Z
      DOI: 10.1177/17446295221088163
       
  • When you are not here, I cannot do what I want on the tablet – The use
           of ICT to promote social participation of young people with intellectual
           disabilities

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      Authors: Elisabet Björquist, Nina Tryggvason
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Most youths use Information and Communication Technology (ICT) for socialising, but there is a discussion about whether using ICT promotes social participation for youths with intellectual disabilities (IDs). Employing the concepts of social participation and self-determination together with the youths’ perspectives, as conveyed by staff, we examine how social participation might be promoted for youths with ID in institutional settings in Sweden.The findings revealed three overarching themes. The first theme, Developing skills, self-determination and becoming less reliant, illustrates the basic use of ICT. The second theme, Sharing events, socialising and participating with others, draws attention to how youths take technology a step further to interact with others. The third theme, Resources and attitudes, concerns the youths’ need and desires for adequate support and equipment and the mindset of surrounding communities concerning ICT. Our conclusion is that ICT has the potential to promote social participation if the youths have access to personalised equipment and supportive staff.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-27T10:47:39Z
      DOI: 10.1177/17446295221087574
       
  • Piloting attachment psychoeducation provided to parents of children with
           severe disabilities: Testing the feasibility of a digital
           micro-intervention

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      Authors: Sien Vandesande, Guy Bosmans, Paula Sterkenburg, Carlo Schuengel, Bea Maes
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundA digital micro-intervention offering attachment psychoeducational videos was explored regarding its feasibility in parents of children with severe disabilities. Method: A mixed-methods study (including daily diaries and one-time questionnaires) with 16 parents (75.0% female) of children with severe disabilities (up to 10 years of age) was done during a three-week intervention. Results: Parents were positive about the video series and almost no drop-out occurred. The videos stimulated their learning and thinking and offered parents some personal meaning. Preliminary efficacy tests showed no major changes in parents’ parenting self-efficacy (PSE) or perceptions of statements on parent–child attachment. Conclusions: The study showed promising results regarding the micro-interventions’ acceptability and implementation. The limited efficacy testing did not show major changes in parents’ PSE. Further research is needed to investigate the differential relevance of the micro-intervention, based on parents’ needs, as well as its optimal embeddedness in a broader intervention trajectory.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-24T11:26:26Z
      DOI: 10.1177/17446295221087564
       
  • Family Support for (Increasingly) Older Adults with Down Syndrome: Factors
           Affecting Siblings’ Involvement

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      Authors: Lise Lemoine, Benoît Schneider
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundLife expectancy for people with Down syndrome is increasing, but older adults with Down syndrome are at greater risk of developing certain pathologies associated with ageing. When ageing parents can no longer look after their child with Down syndrome, their other children are often expected to shoulder this responsibility.MethodWe asked 120 adult siblings of a person with Down syndrome to complete a questionnaire on their current and anticipated relationships.ResultsMost respondents considered these relationships to be positive, but they expressed concerns about the effects of ageing and about having to organise their sibling with Down syndrome’s future life. We investigated the impact of factors relating to the respondents and to their sibling with Down syndrome (age, gender, social inclusion, protection regime) on these general tendencies.ConclusionSiblings need to be given support, for example, via discussion groups, to facilitate the transition to becoming caregivers.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-23T02:43:04Z
      DOI: 10.1177/17446295221082725
       
  • Supporting Social Inclusion in Neighbourhoods of Adults with Intellectual
           Disabilities: Service Providers’ Practice Experiences

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      Authors: Geraldine Boland, Suzanne Guerin
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Deinstitutionalisation has increased the likelihood of adults with intellectual disabilities residing in neighbourhoods either in staff-supported accommodation or in their family home. However, it raises the question of whether national policies on disability have translated into practice actions by service providers that result in positive social inclusion outcomes for individuals. This study examined the practice initiatives supporting social inclusion in neighbourhoods in specialist state-funded service providers for adults with intellectual disabilities. Using a mixed methods design, CEOs/service leaders of 40 organisations completed an online survey. Follow-up interviews were completed with a randomised sample. Shifting towards new service models and strategic links with mainstream organisations were most often mentioned as furthering social inclusion goals. A wide range of service initiatives were reported, with positive outcomes alongside a range of challenges. Service providers play an important role in providing individualised supports that foster local engagement. However, the service context is complex and service leaders have reported many challenges that may impede progress on social inclusion.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-21T07:06:41Z
      DOI: 10.1177/17446295221085479
       
  • Stress Levels and Coping Strategies of Families of Adults With
           Intellectual Disability and Challenging Behaviours During the COVID-19
           Pandemic in Qatar

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      Authors: Mohamed El Tahir, Bushra Elhusein, Hassan Elamin, Hesham Rustom, Shuja Reagu, Hanan Bedhiaf, Salwa Abdirahman, Majid Alabdulla
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study investigated the perceived stress levels and coping strategies of caregivers of adults with intellectual disability and challenging behaviours during the COVID-19 pandemic in Qatar. A cross-sectional survey was conducted from June 7 to September 7, 2020 for caregivers of adults diagnosed with intellectual disability and challenging behaviours. Perceived stress levels and coping strategies were assessed using the Perceived Stress Scale and Brief Coping Orientation to Problems Experienced inventory. Results showed moderate to high perceived stress levels in most caregivers (69%). The most frequent coping strategy was religion, followed by acceptance and active coping. Substance use and self-blame were less frequently used. The study revealed that emotional support, informational support and venting coping strategies were significant predictors of perceived stress levels. Restrictions on physical activity and social mobility caused by pandemic-related lockdowns have placed tremendous pressure on caregivers. Appropriate supportive measures should be implemented for the caregivers.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-15T05:33:39Z
      DOI: 10.1177/17446295211062381
       
  • The role of familiarity with the experimenter on cognitive performance,
           metacognition, pro-social behaviors, and the well-being of adults with
           moderate to severe intellectual disabilities

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      Authors: Suzanne Igier, Pennequin Valérie
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundFew studies have evaluated the explanatory factors of poor performance and the effects of context in adults with intellectual disabilities. The aim of this study is to assess the role of a familiar experimenter on their cognitive performance, well-being, metacognitive experiences, and social behaviors.MethodParticipants with moderate to severe intellectual disability were recruited into two groups, one with a familiar and one with an unfamiliar experimenter. They carried out a categorization task. Before and after they reported their metacognitive experiences and level of well-being. The experimenter observed their pro-social behavior.ResultsPerformance and some social behaviors were better when the participant knew the experimenter. However, he did not affect the level of well-being. The participants’ metacognitive experiences were poor, whether or not they knew the experimenter.ConclusionsThe familiarity of the experimenter plays a determining role, both on the participants’ performance, and on their compliance with certain pro-social behavior.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-15T02:17:51Z
      DOI: 10.1177/17446295221087544
       
  • Virtual reality and augmented reality as strategies for teaching social
           skills to individuals with intellectual disability: A systematic review

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      Authors: María M. Montoya-Rodríguez, Vanessa de Souza Franco, Clementina Tomás Llerena, Francisco J. Molina Cobos, Sofía Pizzarossa, Ana C. García, Vanesa Martínez-Valderrey
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Virtual reality (VR) and augmented reality (AR) programs have proliferated significantly in recent years and they are finding their way into different educational and therapeutic purposes. This systematic review aims at analyzing the virtual reality and augmented reality programs designed to promote the development of social skills in individuals with intellectual disability. Searches were carried out in the Scopus, Science Direct, Springer and Web of Science databases in the period from 2005 to 2020. A total of six articles met the inclusion criteria. A descriptive data analysis was performed. The results show that the clinical profile of the individuals who participated in the interventions is diverse. It can be concluded that there is some scientific evidence that points to the usefulness of VR and AR in the development of intervention programs to improve the social skills of individuals diagnosed with developmental deficits. However, it is necessary to acknowledge methodological limitations such as the lack of control groups, follow-up measures and of generalization of the results.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-14T07:53:46Z
      DOI: 10.1177/17446295221089147
       
  • One School’s Management of Students With Intellectual Disabilities
           During the COVID-19 Outbreak in Japan: A Study Based on Interviews With
           Teachers

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      Authors: Yusuke Kusumi, Mitsuaki Tominaga, Hironobu Nagasawa, Azusa Fujii
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study aimed to elucidate how school employees caring for students with intellectual disabilities managed emergencies caused by the COVID-19 pandemic. It attended to decision-making by school managers as well as the engagement of local teachers in the outcome resolution process. A total of 10 teachers employed in different positions were purposefully selected from a school for students with intellectual disabilities in Osaka, Japan, and interviews were conducted with them via Zoom. The thematic analysis identified six significant premises: sensemaking, emergency responsive organization, high morale, planning through prioritization, risk management, and recovery from adverse incidents. The findings suggest distributed leadership functions to successfully sustain security in educational practices. Additionally, the empirical study consisting of interviews with staff in multiple positions reveals that all of the staff’s proactive participation in decision-making and the communication process enabled the school to cope with the pandemic crisis as a united organization.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-13T02:03:16Z
      DOI: 10.1177/17446295221082731
       
  • Increasing Sight-Phrase Reading with an iPad intervention for Two Students
           with Intellectual Disability

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      Authors: Kathleen B Aspiranti, Mark E Dula, Sara Ebner, Angela Hilton-Prillhart
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Sight-word interventions are often implemented when students show delays in word recognition. However, few studies have investigated the effects of teaching sight words using phrases. The current study investigated the effects of a tablet-based flashcard intervention on the acquisition of sight phrases. A multiple-baseline design across word sets was used for two students with intellectual disability who were included in the general education classroom for the majority of the day. For each phrase, students used an iPad flashcard program and were prompted to see the phrase, say the phrase, tap the screen to hear the phrase, and then say the phrase again before moving on to the next phrase. Results showed that both students quickly acquired the ability to read the previously unknown sight phrases across three different sets of phrases. Discussion focuses on using tablet-based interventions for students with intellectual disability, particularly those included within a general education classroom.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-12T02:02:40Z
      DOI: 10.1177/17446295221083148
       
  • How Implementation of Cognitive Assistive Technology in Home-Based
           Services for Young Adults with Intellectual Disabilities Influences
           Support Staff`s Professional Practice

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      Authors: Sylvia Söderström, Hege Bakken, May Østby, Karl E. Ellingsen
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The implementation of technology in home-based services takes place in contextualised socio-material practices negotiated through interactions between a diversity of actors. Prerequisites for succeeding in this process are time and competence, and that use of the technology is experienced as meaningful, for both the support staff and the resident. In this article, we investigate how implementation of cognitive assistive technology (CAT) in home-based services for young adults with intellectual disabilities influences the support staff`s professional practice. The participants are eight support staff members, five women and three men. Data were collected through two group interviews, the second one 8 months after the first one. The data were analysed according to a systematic text condensation (STC) approach. Result: Implementation of CAT is a demanding process, revealing different perspectives on professionalism and changing power relations, and entails a new way of working for the support staff.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-04-01T09:41:45Z
      DOI: 10.1177/17446295221083137
       
  • “We’re in the same book, but we’re in different parts of the
           book”: Dominant and sub-group narratives of life following a Down
           syndrome determination

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      Authors: Sarah L. Sangster, Kailey J. DeLucry, Karen L. Lawson
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Parents of children with Down syndrome (DS) were interviewed about if their experiences raising their children matched their initial assumptions about parenting a child with DS. A dominant narrative was identified, wherein most parents described initially having negative assumptions, which did not come to fruition; parenting their child was not very different from parenting a typical child. There was also a sub-group of participants who disputed the dominant narrative; parenting their child was challenging and the dominant narrative marginalizes that experience. The findings indicate that although for many parents, having a child with DS is like “taking the scenic route” (i.e., it involves a few more hurdles, but often more rewards), this framing is not always applicable. Therefore, health care providers and support organizations should promote a narrative that encompasses the diversity of parenting a child with DS.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-03-27T12:33:46Z
      DOI: 10.1177/17446295221079584
       
  • Putting participation into practice: An ethnographic study of sheltered
           workshops in the Netherlands and Portugal

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      Authors: Melissa Sebrechts, Evelien Tonkens
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Full participation is recognized as fundamental for the inclusion and wellbeing of people with intellectual disabilities. Only few studies have identified subjective meanings of participation from the perspective of people with intellectual disabilities themselves. Three cross-cutting themes that arise in the few studies that have are choice, social interaction and making a contribution. This ethnographic study of sheltered workshops in the Netherlands and Portugal takes this body of work a step further by investigating to what extent the ideal of participation is put into practice in such a way that it indeed contributes to these three elements. By including contrasting cases, it scrutinizes different ways of institutionalizing participation and the consequences this bears for the lived experiences of people with mild intellectual disabilities. The results show that there is a tension between choice on the one hand, and social interaction and making a contribution on the other.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-03-27T12:17:59Z
      DOI: 10.1177/17446295211062391
       
  • Virtual care during the pandemic: Multi-family group sessions for Hong
           Kong Chinese families of adolescents with intellectual disabilities

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      Authors: Julia Wing Ka Lo, Joyce Lai Chong Ma, Mooly Mei Ching Wong, Monica Lai Tuen Yau-Ng
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The suspension of social services in Hong Kong during the COVID-19 pandemic increased the caregiver strain for families of adolescent children with intellectual disabilities, possibly aggravating their family relationships. This article reports on an online Multi-Family Group (MFG) conducted during the pandemic for Hong Kong Chinese families of adolescents affected by mild-to-moderate intellectual disabilities. A thematic analysis of the experiences of the participating service users revealed three positive effects of the intervention model: improved family relationships, mutual helpful influences occurring among families, and a new understanding of family members with intellectual disabilities. The therapeutic group process used to promote family development is illustrated by a group vignette. The challenges and the practical considerations for conducting an MFG online are discussed.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-03-27T05:20:30Z
      DOI: 10.1177/17446295221076693
       
  • Restrictive Practices and the ‘Need’ for Positive Behaviour Support
           (PBS): A Critical Discourse Examination of Disability Policy Beliefs

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      Authors: Brent A. Hayward, Lisa McKay-Brown, Shiralee Poed
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundFew studies have considered policies which underpin the promotion of positive behaviour support (PBS). The present study examined policy beliefs about PBS and their relationship to restrictive practices.MethodsDiscourse network analysis (a combination of critical discourse analysis and social network analysis) was used.ResultsA total of 11 policies were examined from which 38 belief statements were coded. One cluster was identified which promoted 13 dominant beliefs. Dominant discourses related to law, safety and the environment were evident. A conceptual representation of the shared PBS beliefs demonstrated contradictions in PBS policy.ConclusionsThere is evidence that PBS policies have become informal rules for using restrictive practices, not reducing them. They are also acting as surrogates to debate conflicts between political, personal and bureaucratic interests. Three recommendations for improved PBS policy are provided.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-03-12T09:01:32Z
      DOI: 10.1177/17446295211062383
       
  • Facilitators of Sense of Belonging Among People With Intellectual and
           Developmental Disabilities: A Systematic Review

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      Authors: Ayelet Gur, Rena Bina
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Background: This review synthesizes the available literature regarding factors which facilitate a sense of belonging in people with intellectual and developmental disabilities, and provide a comprehensive integrative view of the subject. Methods: Four electronic databases were searched, and 13 studies met inclusion criteria for review. The “standard quality assessment criteria for evaluating primary research papers from a variety of fields” indicated satisfactory quality. Factors which facilitate a sense of belonging in people with intellectual and developmental disabilities were analyzed into themes. Results: Sense of belonging is enhanced by feeling respected, accepted, and valued (Subjectivity). These experiences are more likely to be achieved in a familiar and safe environment (Dynamism), and with access to platforms for social interactions (Groundedness), where a sense of relatedness and connectedness achieved by shared experiences with others (Reciprocity). Sense of belonging is associated with committed action of people with disability, taking assertive action or being agentic (Self-determination). Conclusion: Sense of belonging is a unique concept that should be addressed in disability research and practice.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-03-11T12:55:07Z
      DOI: 10.1177/17446295211068424
       
  • Better Health, Better Lives' 10-Years on From the World Health
           Organization’s Declaration on the Health of Children With Intellectual
           Disabilities

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      Authors: Nathaniel Scherer, Roger Banks, Melita Murko, Daniel Chisholm
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      It is now 10 years since the European Declaration on the Health of Children and Young People with Intellectual Disabilities and their Families: Better Health – Better Lives was adopted by the World Health Organization. Through discussions with key informants and an online literature review, we reflect on actions and progress made in line with this Declaration to improve the health and wellbeing of children with intellectual disabilities and their families. Despite finding positive examples of policy, legislation and practice in support of children with intellectual disabilities, there are clear gaps and areas for improvement. Countries must continue to take action, as supported by the World Health Organization and other such organisations, in order to support children with intellectual disabilities in realising their fundamental human rights.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-03-09T07:36:25Z
      DOI: 10.1177/17446295221076687
       
  • Family physicians’ and trainees’ experiences regarding cancer
           screening with patients with intellectual disability: An interpretive
           description study

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      Authors: Genevieve Breau, Sally Thorne, Jennifer Baumbusch, T Greg Hislop, Arminee Kazanjian
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      People with intellectual disability receive breast, cervical, and colorectal cancer screening at lower rates relative to the general population, although the reasons for this disparity are largely unknown. Research, both with the general population and specific to people with intellectual disability, has revealed that a family physician’s recommendation for cancer screening or continuity of primary care may increase screening rates. We interviewed family physicians and family medicine trainees regarding their experiences recommending cancer screening to patients with intellectual disability. We concluded that the decision to recommend cancer screening is complex, and includes physicians weighing their clinical judgement as to the best provision of care for patients with a patient’s eligibility for screening, while continuing to respect patients’ autonomy. This patient-physician interaction occurs within the larger medical environment. Further research with experienced family physicians is warranted to better understand this complex phenomenon.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-22T09:03:24Z
      DOI: 10.1177/17446295211044041
       
  • The Kamishibai theatre in work with children with intellectual disability

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      Authors: Agata Marciniak, Gabriela Dobińska
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The Kamishibai theatre is a traditional Japanese method of storytelling using illustrated boards successively taken out of a small wooden chest used as a screen. Although the method has a significant educational and therapeutic potential, researchers devote little attention to it, focusing mainly on its connection with developing language competency and promotion of reading. However, the Kamishibai theatre constitutes an excellent form of working with children with intellectual disability, as we try to demonstrate in this article. The article is devoted to the issues of using Kamishibai theatre in working with children with intellectual disabilities and the role the teacher plays in implementing this stimulation method. Considerations made are based on the results of two previous scientific projects oriented around the epiphanies and key experiences in the biographies of educators and the impact of various forms of communication within the Kamishibai theatre method on the perception of the content presented to children with intellectual disabilities. The article presents the results of our research, supplements the analysis with the indications regarding the role of the teacher conducting art therapy classes and an in-depth reflection on the predispositions a teacher should possess.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-22T09:01:44Z
      DOI: 10.1177/17446295211036558
       
  • The impact of intellectual disability and sport expertise on cognitive and
           executive functions

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      Authors: D Van Biesen, T Van Damme, RC Pineda, J Burns
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Our aim was to identify the suitability of three assessment tools (i.e., Flanker test, Updating Word Span, and Color Trails Test) for future inclusion in the classification process of elite Paralympic athletes with intellectual disability and to assess the strength of the relation between Executive function (EF) and intelligence. Cognitive and EF assessments were performed on 59 participants, divided into four groups according to their cognitive level (with versus without intellectual disability) and sport expertise (athlete versus novice). Inhibition and working memory update skills were implicated in people with intellectual disability. For set-shifting, a more nuanced picture was observed. Strong associations between EF and intelligence was found in people with intellectual disability. Working memory updating and set-shifting are relevant EF skills to assess in the context of elite sport; however, culture-free alternatives for the Updating Word Span test are needed, and alternatives to the Color Trails Test, less reliant on literacy skills are required.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-18T09:38:19Z
      DOI: 10.1177/17446295211036331
       
  • Perceptions and responses of staff to the sexuality of adults with
           intellectual disabilities at facilities in the Western Cape Province of
           South Africa

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      Authors: Callista K Kahonde
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This study explored perceptions and responses of staff members working at facilities for adults with intellectual disabilities in the Western Cape of South Africa toward the adults’ sexuality. Semi-structured interviews were conducted with 12 staff members from four facilities. The data was analyzed using reflexive thematic analysis. Perceptions of service providers were mostly determined by their facility’s ethos and policy on sexuality issues. Some staff members regarded sexuality as a human right and supported all aspects of it while others acknowledged sexuality as a right but perceived the adults as incapable and suppressed their sexuality. Attitudes of the adults with intellectual disabilities’ families were the biggest hurdle faced by the staff who supported the adults’ sexuality. Staff members from different facilities need to learn from each other and direct engagement between the facilities and families is needed to ensure support of the adults with intellectual disabilities to experience sexual autonomy.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-16T09:16:00Z
      DOI: 10.1177/17446295211048743
       
  • The use of the cambridge neuropsychological test automated battery for
           people born with Down syndrome and those born premature: A comparative
           systematic review

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      Authors: Rosana M Tristão, Lucas A Scafutto Marengo, Julia Feminella Duarte da Costa, Ana Luísa dos Santos Pires, Elvio M Boato
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      This review aimed to investigate the use of the Cambridge Neuropsychological Automated Testing Battery (CANTAB) for people at risk of cognitive impairment, especially those born with Down syndrome and those born preterm. Six databases were searched according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards, in addition to the bibliography index listed in the CANTAB site. Twenty four studies regarding Down syndrome and 17 regarding prematurity were reviewed and are here described. Both cognitive profiles were described, and their performance was compared on specific tasks and CANTAB tests. In this battery of tests, people with Down syndrome usually present impaired key cognitive domains, such as episodic memory and recognition memory. Results were presented considering general aspects described in the studies, specific findings such as dementia, the role of genetics, and cognitive profile, among other descriptions. Comparability between both populations in future studies is discussed.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-15T02:26:08Z
      DOI: 10.1177/17446295211050460
       
  • Oral health status and quality of life of the parental caregivers of
           children with Down syndrome: A case-control study

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      Authors: Carolina Schwertner, Caroline Dias da Silva, Débora Grando, Juliana Balbinot Hilgert, Lina Naomi Hashizume
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The aim of this study was to investigate the oral health status and quality of life (QOL) of the parental caregivers of individuals with Down syndrome (DS), and to evaluate whether there is an association between these variables. The sample of this cross-sectional study was composed by parental caregivers of children with DS (CCDS) and parental caregivers of children without DS (CNDSC). Oral examination was undertaken and a questionnaire was given to participants. QOL was evaluated by WHOQOL-Bref. CCDS presented a higher number of dental prosthesis users and higher gingival bleeding index compared to CNDSC. When oral health was associated with QOL, the use of dental prosthesis was associated with physical domain and the variables having chronic disease and family income were associated with the social domain for both caregivers. The results suggest that caregivers of children with DS have similar oral health and QOL compared to caregivers of children without DS. In both caregivers, oral health status is associated with QOL.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-11T09:30:30Z
      DOI: 10.1177/17446295211048737
       
  • Maternal perspectives: The needs of Saudi families of children with
           Down’s syndrome

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      Authors: Waleed Alabri
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Down syndrome (DS) is a chromosomal condition that is affecting an increasing number of infants born in Saudi Arabia. This study investigates the needs of families with children with DS in Saudi Arabia from mothers’ perspectives and in a cultural and religious context. An exploratory qualitative research design was used, and semi-structured interviews were conducted with 14 mothers of children with DS. Interview data were thematically analyzed. The most important need was found to be financial or tangible support. An increase in benefits or monthly financial allowances and social security insurance would address these concerns. Societal support is also needed; mothers want DS to be perceived differently and require more support, including better rehabilitation and education services. Informational support is needed to improve the conditions of children with DS. Recommendations for improving the quality of life of children with DS are discussed.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-11T09:28:30Z
      DOI: 10.1177/17446295211044406
       
  • Past, Present and Future: Perspectives on an Oral History of Intellectual
           Disability Nursing

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      Authors: Carmel Doyle, Colin Griffiths, Su McAnelly, Helen Atherton, Michelle Cleary, Sandra Fleming, Bob Gates, Paul Keenan, Paul Sutton
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Thirty-one participants engaged in this oral history research study aimed at exploring the lived experience of intellectual disability nurses and healthcare assistants’ knowledge of the trajectory of intellectual disability nursing over the last 30 years in the Republic of Ireland and England. This paper documents some of these experiences offering perspectives on intellectual disability nursing and what is important for the future. Findings from Ireland consider the nature of intellectual disability services and the registered nurse in intellectual disability. Findings from England focus on opportunities and restrictions in intellectual disability nursing, shared visions, the changing context within which work took place and also the internal and external supports that impacted their roles. It is evident that intellectual disability nurses must be responsive to the changing landscape of service provision and also the requirements for contemporary new roles to meet the changing needs of people with intellectual disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-10T11:25:38Z
      DOI: 10.1177/17446295211065195
       
  • Development of a scale to assess the determinants of positive coping in
           parents of children with intellectual disability

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      Authors: Vasudha Hande, Parvathy Jayan, M Thomas Kishore, Binukumar Bhaskarapillai, John Vijay Sagar Kommu
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Identifying the determinants of positive coping is a critical step in empowering the parents of children with intellectual disability. In this context, this study aims to develop a scale to assess the determinants of positive coping. Accordingly, culturally relevant items were pooled, got validated by experts and refined. The scale was administered to 150 parents of children with intellectual disability. Factor analysis done through polychoric correlation helped reduce the items. Cronbach’s alpha coefficients were established for reliability testing. The validity of the new scale was examined with the subjective wellbeing on a visual analogue scale and Family Interview for Stress and Coping in Mental Retardation. The new scale has a Cronbach’s alpha of 0.71 and an intraclass correlation of 0.64. After factor analysis, 12 items were retained in the final version. This study also identified specific factors associated with positive coping. The new scale can be used with parents of children with intellectual disabilities to identify the determinants of positive coping.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-07T09:25:00Z
      DOI: 10.1177/17446295211056824
       
  • Exploring needs, barriers, and facilitators for promoting physical
           activity for children with intellectual developmental disorders: A
           qualitative focus group study

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      Authors: Charlotte Boman, Susanne Bernhardsson
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      BackgroundMany children with intellectual developmental disorders are insufficiently physically active and do not reach recommendations for physical activity. Pediatric healthcare providers play a key role in addressing these children’s needs, including promoting interventions for physical activity.AimTo explore pediatric healthcare providers’ perceived needs, barriers, and facilitators for promoting physical activity for children with intellectual developmental disorders.MethodsSemi-structured focus groups, analyzed using qualitative content analysis. Sixteen healthcare providers participated.ResultsMain findings are the importance of parental support and engagement, need for structure, and stakeholder collaboration to bridge the gap between pediatric organizations and external stakeholders.ConclusionThe study highlights the need for developing and implementing strategies to promote physical activity for children with intellectual developmental disorders in pediatric health care, and for producing guidelines regarding physical activity interventions for this vulnerable group.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-02-05T10:59:48Z
      DOI: 10.1177/17446295211064368
       
  • “Connectedness” between people with intellectual disabilities and
           challenging behaviour and support staff: Perceptions of psychologists and
           support staff

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      Authors: T Tournier, AHC Hendriks, A Jahoda, RP Hastings, PJCM Embregts
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have ‘a real connection’ with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection. In conclusion: joint engagement in an activity appears to be a context that fosters opportunities for real connection. Furthermore, support staff should adopt a sensitive attitude and create a safe atmosphere, to establish real connections.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-01-28T01:01:18Z
      DOI: 10.1177/17446295211056820
       
  • The Perspective of Administrators of Intellectual Disability Organizations
           on the COVID-19 Pandemic

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      Authors: M. Courtney Hughes, Jennifer A. Gray, Jinsook Kim
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Objective: To learn about the challenges, policies, and needed resources to serve people with intellectual disability and protect staff during the COVID-19 pandemic. From the perspective of intellectual disability service providers. Methods: We conducted in-depth qualitative interviews with 16 intellectual disability organization administrators throughout Illinois, USA from November 2020 through February 2021. We coded and analyzed the data using thematic analysis. Results: Three major themes emerged: (1) COVID-19 caused considerable challenges to people with intellectual disability and staff and service providers, (2) intellectual disability organizations reinvented service provisions in response to COVID-19 challenges, and (3) the interrelatedness of intellectual disability organizations, public policies, and community entities became evident. Conclusions: Exhibiting responsiveness to needs and developing innovative solutions were strategies championed by intellectual disability organizations during the pandemic. Fostering collaboration with community entities may assist these organizations in navigating pandemic challenges and developing resilient infrastructure for future environmental threats.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-01-17T11:32:25Z
      DOI: 10.1177/17446295211062400
       
  • Advancing inclusive research with people with profound and multiple
           learning disabilities through a sensory-dialogical approach

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      Authors: Anita Gjermestad, Synne N Skarsaune, Ruth L Bartlett
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research—even when intending to be inclusive—tends to operate within criteria that exclude people with profound and multiple learning disabilities. The aim of this article is to provide a state-of-the-art review of the topic of inclusive research involving people with profound disabilities and thereby challenge traditional assumptions of inclusive research. The review presents themes that will inform a discussion on how to challenge the criteria in ways that make it possible to understand inclusive research for people who communicate in unconventional ways. We argue that a fruitful way of rethinking inclusive research is by applying a sensory-dialogical approach that privileges the dialogical and sensory foundations of the research. We suggest this might be a way to understand inclusive research that regards the person’s communicative and cognitive distinctiveness.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-01-11T05:48:03Z
      DOI: 10.1177/17446295211062390
       
  • Diversity training for health professionals: Preparedness to competently
           address intellectual disability in the Western Cape Province, South Africa
           

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      Authors: Mario R Smith, Maryam Papadakis, Erica Munnik
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Diversity training for health professionals in South Africa has traditionally been conceptualized as differences in gender, race or ethnicity, culture and sexual orientation. More recently physical disability and mental illness was included as a dimension. Intellectual disabilities received lip service as a diversity concern. This paper reports on health professionals' perceptions of the extent to which diversity training prepared them to competently deal with intellectual disabilities. This explorative study included a purposive sample of 18 health care professionals experienced in intellectual disability services. Two focus groups were facilitated over three sessions. Transcripts were analysed thematically. Health professionals felt inadequately prepared to consider intellectual disabilities as a diversity issue. They could not effectively advocate for reasonable accommodation. There was a differential familiarity with issues related to diversity and intellectual disability with profession constituting an additional intersecting dimension of diversity. Health professions did not perceive their diversity training to prepare them to deal competently with intellectual disabilities.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-01-07T05:49:37Z
      DOI: 10.1177/17446295211050468
       
  • “Life-altering”: A qualitative analysis of social media birth stories
           from mothers of children with Down syndrome

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      Authors: Rebecca R Kammes, E Megan Lachmar, Sarah N Douglas, Hannah Schultheiss
      First page: 919
      Abstract: Journal of Intellectual Disabilities, Ahead of Print.
      Perinatal depression/anxiety is a significant concern for mothers of children with Down syndrome. This is influenced by the way the Down syndrome diagnosis is shared with parents. This study examined social media posts from mothers regarding experiences of the birth of their child with Down syndrome. Forty-three total stories were coded using thematic content analysis. Results highlighted the experiences of mother’s who received a diagnosis of Down syndrome for their newborn. Two themes were found with relevant subthemes (i.e., receiving the diagnosis—mother’s intuition, confirmation of the diagnosis, influence of potential health concerns, initial emotions, impact of the medical professional; Processing the diagnosis—life-altering, child not meeting expectations, reframing the diagnosis, impact of partner and others). Findings highlight the need for medical personnel to understand this identity-changing process, as perinatal depression/anxiety looks different for these mothers. There is also a need to help them engage in services accordingly.
      Citation: Journal of Intellectual Disabilities
      PubDate: 2022-07-28T05:52:20Z
      DOI: 10.1177/17446295211025960
       
 
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