Medical care services for people with intellectual disabilities living in the general community: A cross-sectional survey of inpatient care utilization in Taiwan, 2001

Background. The medical care needs and problems of persons with intellectual disabilities (ID) living in the general community have received limited attention in previous studies. The aim of this article is to describe aspects of medical care utilization among people with ID living in the general community, with particular emphasis on examining the type and determinants of inpatient care utilization in Taiwan.

Methods. A cross-sectional survey of people with intellectual disabilities was employed. A total of 997 respondents who provided fully completed data concerning inpatient care utilization were recruited into the analysis.

Results. A total of 12.4% of individuals with intellectual disabilities had used inpatient care in the 7 months prior to the survey. The average number of inpatient care visits in that time was 1.43, with an average hospital stay of 16.91 days. Surgery, fever, gastrointestinal disorders, psychiatric disorders, and accident were the main causes of inpatient care utilization. A stepwise logistic model showed that the factors of holding a Major Illness Card, regular medicine-taking and self-perceived health status were statistically significant to inpatient care utilization of people with intellectual disabilities.

Conclusions. Medical care providers and policy makers need to be aware that many people with intellectual disabilities have increased medical care needs that may require modification of standard medical care practices and service models in society.     

Current perspective regarding adults with intellectual and developmental disabilities accessing computer technology

Purpose: This article was written to summarize current efforts in the research community in regards to assisting adults with severe developmental and intellectual disabilities to access a computer. Method: A literature search was conducted to determine contemporary research that has been conducted to enable computer use in persons with significant developmental disabilities utilizing databases such as ERIC or PubMed. Results: Although various assistive technology devices and interventions have been developed for persons with all types of disabilities, a lack of research into methods to help persons with severe developmental disabilities access a computer is evident. This perpetuates the underutilization of computers in this population such as those attending day programs or residing in residential facilities. Conclusions: Persons with developmental disabilities, particularly adults, are often overlooked and are not thought to be capable of using a personal computer. Though communities have endeavored to further enhance participation by persons with disabilities in many aspects of mainstream society, there is a scarcity of research pertaining to how adults with intellectual disabilities can access a computer, especially those with severe impairments. Once formal schooling is over, there appears to be scant interest in supporting adults using computers.

Implications for Rehabilitation

• Helping a person to access a computer use should be considered to be within the purview of rehabilitation professionals, even when an individual has an intellectual disability.

• Research into methods to enable access to computer technology should incorporate persons with severe intellectual disabilities, including adults.

• Assistive technology devices, including those associated with computer technology should be developed with persons with severe developmental disabilities in mind to facilitate access.

• Rehabilitation professionals such as speech therapists, occupational therapists and physical therapists should work in concert to develop guidelines and protocols founded on research to aid persons with severe and multiple disabilities who want to access a computer.

     

Community Habilitation and Integration of Adults with Psychiatric Disorders and Mental Retardation: Development of a Clinically Responsive Environment

Ten individuals with mental retardation and psychiatric disorders who failed in their community placements due to aggression, property destruction, and suicidal ideation were provided an environment emphasizing a network of mental health and developmental disabilities services. The focus of programing was the application of psychiatric rehabilitation principles and environmental behavior support strategies. Components of the treatment model included goal-setting, comprehensive case management, social skills training, positive reinforcement, crisis intervention, competency-based skills teaching, medication monitoring, data-based outcome measurement, and community-living arrangements. Results indicated that in contrast to their preintervention status, all individuals demonstrated significant reductions in targeted behaviors, maintained extended placement within the community without emergency hospitalizations, developed effective and adaptive social skills, secured job placement, and reported satisfaction with their quality of life.     

Assessment of GPs' beliefs relating to the care of people with intellectual disabilities: A Taiwan-based,opportunity-guided approach

Purpose. This study was designed to investigate general practitioners' (GPs) beliefs about the perceived importance of their role in, and their satisfaction with, providing healthcare to people with intellectual disabilities. The identification of healthcare issues with potential for improvement was assessed using gap analysis and an opportunity-guided method.

Method. A cross-sectional census survey by a mail-structured questionnaire recruited 331 GPs (response rate = 16%) who provided information on healthcare for people with intellectual disabilities in 2006 in Taiwan.

Results. The results indicated that GPs considered their role in providing healthcare for people with intellectual disabilities to be important (mean score 7.2 – 8.3). However, the respondents generally did not feel satisfied (mean score 4.6 – 5.5) with their achievements in treating patients with intellectual disabilities. We found that the gender and educational level of the respondents were statistically correlated to the perceived importance they considered their work to have, while the factors of age, medical practice setting and training experience in intellectual disability were statistically correlated to GPs' perceived satisfaction in providing healthcare to people with intellectual disabilities (p < 0.05). Those healthcare issues of ‘training and experience in intellectual disability’, ‘multi-disciplinary and multi-sectoral cooperation’, ‘adequate competence in disability diagnosis’, ‘genetic consulting services’, ‘duty of disease prevention and health promotion’, and ‘adequate medical consultation time’ were the five most promising areas to be improved in healthcare for people with intellectual disabilities according to the opportunity-guided analysis.

Conclusions. This study highlights that health professionals need to examine carefully healthcare issues pertaining to people with ID, and that much more effort is required to develop appropriate healthcare policies based on the opportunity-guided health issues identified here.     

Addressing the need for education: curriculum development for nurses about intellectual and developmental disabilities

People with disabilities and national and international agencies are voicing their views, forcing health care providers to look at how people with disabilities are treated in the health care system and to find ways to help them achieve equal access to quality care. Education about nursing care of patients with I/DD is limited in basic nursing education programs and for nurses who are in practice. A number of developmental disabilities nursing projects are addressing this need with curriculum development that has validated the need for education and has begun testing the various methods of instruction. As the curriculum is disseminated in written or Internet-accessible formats, nurses in education and practice will be able to find resources that target a specific topic area or a set of comprehensive instructions to acquire a better understanding of the comprehensive needs of people with I/DD and better ways to provide care. There is a need for a greater integration of curriculum about nursing care of people with developmental disabilities into basic nursing education at all levels and further evaluation of the impact of this curriculum on nursing care for people with I/DD. The hope is that these efforts can improve the education of nurses and other health care providers for the direct benefit of individuals with intellectual disabilities.     

Toward mainstream nursing roles specialising in the care of people with intellectual and developmental disability

ProblemThere is international evidence that people with intellectual and developmental disabilities experience barriers to health care and inequalities in health. Nurses are well placed to assist in reducing these inequalities, but countries differ in the way they prepare nurses to meet the needs of people with intellectual and developmental disabilities. Concerns have been expressed regarding a lack of appropriate educational preparation and the impact that this has on the health of this population.AimThis discussion paper describes and explores the model of specialist nursing in Wales, UK with a specific focus on the role of community nurses and the hospital liaison nurse. This is then compared with the current situation in Australia which, it is argued, is fragmented and uncoordinated.DiscussionAlthough some promising developments are noted, it is argued that to effectively identify and meet the health needs of Australians with intellectual and developmental disabilities, a transformation is required to the educational preparation and recruitment of nurses.ConclusionModels of care that are widespread in Wales, UK, offer insights into how mainstream health services in Australia can accommodate specialist intellectual and developmental disability roles for nurses.     

DVD-based stories of people with developmental disabilities as resources for inter-professional education

Purpose.?The use of DVD stories about people with developmental disabilities within inter-professional education (IPE) across healthcare disciplines was evaluated.

Methods.?First year healthcare students (n?==?241) from an IPE unit responded to an attitude scale before and after viewing and discussing a DVD portraying the life and healthcare needs of an adult with cerebral palsy; a third round of data collection occurred later. Qualitative data were obtained from four first year and six second year tutors who discussed student reactions to the DVD. Six first year and four second year students participated in focus groups following viewing of a second DVD, about a young girl with developmental disabilities and complex health needs.

Results.?ANOVA of the attitude scores did not show significant differences from pre- to post-viewing and discussion of the DVD, nor at a third round of data collection. Qualitative analysis revealed that the DVDs did cause students to shift assumptions, perceptions and understanding of the disabilities depicted, and to learn about their own and other professions.

Conclusions.?DVD scenarios of real people with developmental disabilities in real settings offer a means of providing IPE opportunities. The data also point to the need and directions for the development of a new attitudinal measure.     

Food on Film: Pilot Test of an Innovative Method for Recording Food Intake of Adults with Intellectual Disabilities Living in the Community

Background Adults with intellectual or developmental disabilities need dietary monitoring but are not likely to be able to provide accurate dietary intake data via traditional methods. Pilot study efforts to meet their support needs with a novel and practical approach to dietary intake data collection are described in this brief report. Materials and Method Still photography kits were used by nine adult volunteer participants with intellectual disabilities who lived in group homes or in semi‐independent living arrangements to capture images of the food they consumed over 24 h. Results Use of photographs during dietary intake interviews improved the reliability of the participants’ responses. Mean reliability ratings improved from ‘Indiscernible/Poor’ (mean range 1.0–1.7) to ‘Good/Excellent’ (mean range 3.6–5.0). Conclusions Our preliminary data imply that Food on Film is an effective and appropriate tool for use in community settings and warrants further testing.     

Implementation of inclusive education for children with intellectual and developmental disabilities in African countries: a scoping review

Abstract

Purpose: To advance understanding of practices that support inclusion of children with intellectual and developmental disabilities in inclusive education classrooms in Africa by conducting a review of the extant literature.

Methods: Five academic databases were searched supplemented by a hand search of key journals and references of included studies. Two authors independently screened studies via a reference manager (Covidence) which allowed for blinding. A third author was consulted in cases of conflict.

Results: Thirty articles that provided empirical evidence of inclusive education implementation were included. Eight articles highlighted practices that support inclusion of children with intellectual and developmental disabilities. Using Bronfenbrenner’s bioecological framework, findings revealed that inclusive education implementation is influenced by factors on the bio level, micro level, meso level, and macro level. Recommendations for promoting inclusive education implementation are provided.

Conclusions: Inclusion goes beyond teachers and requires strong commitment of other stakeholders such as families and governments. To guarantee the smooth inclusion of children with special education needs and particularly with intellectual and developmental disabilities, a set of practices validated through rigorous research as supportive and unique and that can be universal to Africa is wise.

• Implications for rehabilitation

• A number of strategies were identified that can improve the classroom inclusion of children with intellectual and developmental disabilities. Development of policies that support such strategies could improve implementation.

• Inclusion goes beyond teachers. Rehabilitation professionals (i.e. occupational therapists) and educational professionals should partner to identify practical solutions to the challenges of creating inclusive environments for children with special education needs.

• Committing more resources and time towards the development and implementation of special education policies can advance the successful inclusion of children with special education needs.

     

Are there differences in factors influencing access and continued use of assistive products for people with intellectual disabilities living in group homes?

Abstract

Background: The World Health Organization has launched a program to promote Global Cooperation on Assistive Technology (GATE) to implement those parts of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) referring to assistive technology and products. A particular vulnerable group deeply affected by health inequity affecting access to assistive products are people with intellectual disabilities.

Objective: The objective of this study is to understand the barriers and facilitators to effectively access and continuously use essential assistive products for people with intellectual disabilities.

Materials and methods: Face-to-face interviews with 15 adults with a mild to profound intellectual disability and 15 providers of assistive products were conducted to gain insights about current use, needs, knowledge, awareness, access, customization, funding, follow-up, social inclusion, stigma and policies around assistive products and intellectual disability. The technique of constant comparative analysis was used to analyze the data.

Results and conclusion: An overview of factors is presented that fit within seven domains for access and eight domains for continuous use of assistive products for people with intellectual disabilities. It illustrates that access and continuous use are influenced by different barriers and facilitators. These different influences should be taken into account in country policies and frameworks that seek to implement the UNCRPD through assistive technology.

• Implications for rehabilitation

• Proactive assessment for assistive products by health professionals is rare and the vast majority of people with intellectual disabilities depend on carers to signal the need .

• A lack of education for carers around available assistive products and the benefits of assistive products for people with intellectual disabilities may lead to an underutilization for this group.

• The paternalistic attitude of care providers towards people with intellectual disabilities limits access and use to certain (high-tech) assistive products.

• The segmented and disjointed aspect of public funding to support assistive products found in this study is a key issue for policymakers who aspire to adhere to implementing the UNCRPD equally in all areas of their country.

     

An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: the importance of belonging,fun, and control and choice

Abstract

Purpose: The aim was to examine the leisure activity setting experiences of two groups of youth with severe disabilities – those with complex continuing care (CCC) needs and those who have little functional speech and communicate using augmentative and alternative communication (AAC). Method: Twelve youth took part in a mixed methods study, in which their experiences were ascertained using qualitative methods (observations, photo elicitation and interviews) and the measure of Self-Reported Experiences of Activity Settings (SEAS). Data integration occurred using a “following a thread” technique and case-by-case analysis. Results: The analysis revealed several highly valued aspects of leisure activity setting experiences for youth, including engagement with others, enjoying the moment, and control and choice in selection and participation in activity settings. Conclusions: The findings provide preliminary insights into the nature of optimal activity settings for youth with severe disabilities, and the mediators of these experiences. Compared to other youth, the data illustrate both the commonalities of experiences and differences in the ways in which these experiences are attained. Implications for research concern the utility of mixed methods approaches in understanding the complex nature of participation experiences. Implications for clinical practice concern the importance of not assuming the nature of youths’ experiences.

• Implications for Rehabilitation

• Service providers can lose sight of the importance of broader concepts of belonging, fun, and control and choice when providing interventions that focus on “participating” in an “activity” to build specific skills.

• In addition to the skill-based outcomes for youth with disabilities that are valued by the rehabilitation system, we suggest that consideration needs to be given to other types of outcomes that matter to youth, such as participating in a leisure activity for the sake of belonging or having fun.

• It is important not to assume that youth with severe disabilities are not enjoying their participation or are not benefiting from their leisure experiences.

• It is important not to “over-therapize” youth with disabilities and promote a balanced approach to therapy and leisure participation, by discussing with youth and families the beneficial developmental outcomes that can accrue from leisure activities.

     

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract

People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.     

Preliminary Assessment of Friendship,Problem Behavior,and Social Adjustment in Children with Disabilities in an Inclusive Education Setting

Children with mild disabilities may experience complications in friendship development. This study examined variables related to friendship among third- and fifth-grade students with (n = 12) and without (n = 18) disabilities in inclusion classrooms. Thirty students completed sociometric nominations and identified a preferred best friend. Additionally, students with disabilities completed a self-competence questionnaire and teachers rated them on social and behavioral dimensions. Students with disabilities showed adequate self-competence and tended to nominate other peers with disabilities on sociometric assessments, but did not select a peer with a disability as a preferred best friend. Teachers ranked students with disabilities higher on behavior problems and rated them lower on classroom adjustment, social integration, and academic performance when compared to non-disabled peers. Although students with disabilities identified preferred friends, they may be at risk for a number of negative socio-behavioral outcomes, suggesting the need for both social skills and academic-related interventions.     

Reducing ‘Challenging’ Behavior by Training Support Staff to Promote Dignity and Respect

The occurrence of ‘challenging’ behavior is commonly documented amongst people with intellectual and developmental disabilities (IDD). Since behavior is not only a form of communication, but often in response to environmental conditions, it stands to reason that one mechanism to reduce ‘challenging’ behaviors would be to draw attention to people’s environmental conditions and well-being, such as people’s physical and mental health, and lack of opportunities and exclusion, and by treating people with dignity and respect. This research study aims to explore the relationship between ‘challenging’ behavior, and dignity and respect, particularly by exploring the role support staff can play in promoting dignity and respect. We had the following research question: what is the relationship between support staff being trained to promote dignity and respect and ‘challenging’ behaviors? To explore this research question, we analyzed Basic Assurances^® and ‘challenging’ behavior data from 74 human service organizations that supported 6982 unduplicated people with IDD annually. Our findings revealed that, regardless of the agency size or geographic location, when support staff were trained to promote dignity and respect and to recognize each person as a unique individual, the number of ‘challenging’ behaviors people with IDD exhibited reduced significantly. While not all ‘challenging’ behavior may be reduced by staff being trained to promote dignity and respect alone, findings from our study suggest this training may be one mechanism to reduce the incidence of ‘challenging’ behaviors, and by extension, the need for behavior intervention services which can be controversial and costly.

     

A Rare Cause of Septic Shock in the Emergency Department in an Intellectually-Disabled Child

BackgroundSepsis in older children is often associated with the presence of developmental abnormalities and cerebral palsy. While relatively uncommon, surgical abdomen in these patients is associated with a high rate of mortality. Few reports have been described of sepsis caused by isolated cecal necrosis.Case ReportWe report a 13-year-old child with cerebral palsy and global developmental delay who presented to the emergency department with acute worsening abdominal distention that the mother attributed to chronic constipation. Clinical evaluation revealed that she was in severe septic shock and needed immediate stabilization after which she underwent an exploratory laparotomy. Operative findings revealed cecal necrosis that necessitated an ileocecectomy.Why Should an Emergency Physician be Aware of This?Children with intellectual disabilities presenting with sepsis to the emergency department can be particularly challenging given the communication barriers and the time-sensitive nature of the condition. When evaluating these patients, a thorough history and examination are often the only tools that assist in the early identification of the infectious source, leading to improved clinical outcomes.© 2019 Elsevier Inc.     

Attitudes to Bereavement and Intellectual Disabilities in an Irish Context

Background The influence of grief and bereavement on the lives of people with intellectual disabilities is currently receiving much interest. Many of the long‐standing rituals associated with bereavement are still practised in Ireland, probably more than in many other Western countries. The present authors were interested in studying the experience of bereavement for people with intellectual disabilities in Ireland, and in making international comparisons. Method This mixed method study was carried out using two questionnaires. The first was used to study national service and organisational approaches to bereavement. The second questionnaire (based on Murray et al. 2000 ) was used to study a staff group working in Ireland, assessing staff knowledge and understanding of the grieving process. The results were compared with a UK staff group who were assessed using the same questionnaire ( Murray et al. 2000 ). Results Staff and service attitudes were found to be very positive in supporting people with intellectual disabilities who have been bereaved. There is considerable understanding of the needs of bereaved individuals, and there is a high level of support in the participation in grief rituals. When compared with a UK staff group, Irish staffs were more inclined to encourage individuals to take part in bereavement rituals, though they had less actual experience in supporting bereaved people. Only one service had written bereavement guidelines. Conclusions There appears to be cultural differences in the experience of bereavement for people with intellectual disabilities. This is important in the context of staff training and policy development in grief and bereavement.     

Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF

Purpose: The purpose of this review was to describe literature relating to transition for young people with an intellectual disability and identify gaps within the current knowledge base. Method: A narrative literature review was undertaken. Searches of databases Medline, CINAHL, PsycINFO, ERIC, ISI Web of Science and ProQuest 500 International provided relevant research articles. The search terms used were intellectual disability, transition, employment, and ICF as well as other terms derived from the ICF. Manual searches of reference lists identified additional studies. Furthermore, government websites were searched for relevant reports and policies. Results: Transition literature was explored by ICF domains; body functions and structures, activity and participation and contextual factors. Studies were identified in some but not all areas and included literature describing self-determination and participation in leisure activities for those with mild intellectual disability. However, significant gaps were found particularly for those with severe intellectual disability. Conclusions: The ICF is a useful tool in framing a review of transition literature for young people with intellectual disability due to the complexity and multi-faceted nature of transition. The important influence of environmental factors including family systems, post-school services and access to transport were highlighted as having considerable impacts on transition outcomes.

Implications for Rehabilitation

• The ICF is a useful tool in framing transition research to identify gaps.

• The current body of literature in transition from school for young adults with intellectual disabilities is too singularly focused and rarely considers those with moderate to severe intellectual disability.

• There has been little research on this topic in low and middle income countries.

• The scale of the impact of environmental factors on young people transitioning from school to post-school is currently under-represented.

• A holistic approach to post-school outcomes needs to be undertaken in future research.

     

Experiences of adults with complex communication needs receiving and using low tech AAC: an Australian context

Abstract

Purpose: We explored the experiences of adults who received aids through the Non-Electronic Communication Aids Scheme (NECAS). Methods: Fifteen adults aged 21–74 years, with complex communication needs (nine males) associated with developmental (n?=?10) or acquired disabilities (n?=?5) who received NECAS aids, and 12 support people participated. Interviews provided data for thematic analysis. Results: Participants used multi-modalities, reflecting that there is more than one way to communicate, but differed in using their augmentative and alternative communication (AAC) aids according to time and place. How NECAS and other forms of AAC, including electronic devices, were meeting communication needs varied, and reviewing needs was needed. Participants reported being empowered through reducing frustration, increasing independence and facilitating relationships. There were varied preferences for low versus high tech, according to speed of communication and tolerance for breakdowns. They differed in being concerned about what other people think when aids were used in the community, and reactions and attitudes of others. Owning the process emerged through varying degrees of participation in developing and updating their NECAS and other aids. Conclusions: The results are discussed in terms of the benefits of multimodal options, consumer-desired outcomes in research into the effectiveness of AAC and need for ongoing supports.

• Implications for Rehabilitation

• AAC includes both high (assistive)-technology and low-technology options.

• In order to implement best practice, AAC provision of low- and/or high-tech options must be driven by individual needs rather than service limitations.

• In this qualitative study, the benefits of access to various low- and high-tech AAC options to address needs and preferences are demonstrated.

     

Managing Challenging Behaviors at Home without Services: the Perspective of Parents Having Young Children with Intellectual and Developmental Disability

Families of young children with intellectual and developmental disabilities (IDD) experience challenges that may be exacerbated by challenging behavior (CB) and a lack of specialized support services. While waiting for services, families must implement strategies on their own, while taking arduous steps to access supports to eventually meet their needs. Through an online survey, 60 families reported on their experiences managing CBs in the absence of specialized services, including strategies adopted, challenges encountered in implementing interventions, perceptions regarding their efficacy, steps taken to access services, and needs in terms of specialized services and external supports. More than half reported feeling inadequate to the task. These families identified needs in relation to both technical and psychological support. We suggest options that could be offered to families waiting for services to strengthen the sense of parental competence, help to better manage CBs with parent-mediated interventions, and support families’ psychological well-being.