Health Information Systems for Clients with Mild Intellectual and Developmental Disability: A Framework (original) (raw)
Related papers
2018 IEEE International Conference on Healthcare Informatics, 2018
Individuals with intellectual and developmental disability remain among the most vulnerable members of society and frequently face numerous barriers to healthcare services. The purpose of this paper is to review the literature exploring health information access and use for those with intellectual and developmental disability (IDD), identifying barriers they face when using systems. A literature search was conducted to identify studies presenting experiences of individuals with IDD when accessing health information. We identified 28 studies which were published between January 2005 and October 2017. Thematic analysis of included articles resulted in identifying six major barriers: (a) communication skill, (b) patient engagement and satisfaction, (c) training/education for clients with IDD, (d) attitude and knowledge of healthcare providers, (e) clients with IDD being excluded from health promotion and research, and (f) quality of accessing healthcare services. The themes presented here provide a starting point in understanding the accessibility of health information for IDD clients. This will facilitate our future research on health interventions for IDD clients through the use of healthcare technology.
BMC Health Services Research
Background Care for people with an Intellectual Disability (ID) is complex: multiple health care professionals are involved and use different Health Information Systems (HISs) to store medical and daily care information on the same individuals. The objective of this study is to identify the HISs needs of professionals in ID care by addressing the obstacles and challenges they meet in their current HISs. Methods We distributed an online questionnaire amongst Dutch ID care professionals via different professional associations and care providers. 328 respondents answered questions on their HISs. An inventory was made of HIS usage purposes, problems, satisfaction and desired features, with and without stratification on type of HIS and care professional. Results Typical in ID care, two types of HISs are being used that differ with respect to their features and users: Electronic Client Dossiers (ECDs) and Electronic Patient Dossiers (EPDs). In total, the respondents mentioned 52 unique HI...
Disabilities, 2021
People with an intellectual disability experience high levels of social exclusion and a range of health inequalities. Increased inclusion and participation in healthcare decision making have been identified as key to promoting inclusion in health and social care. However, achieving these objectives requires increased recognition of the communication and health literacy needs of individuals with an intellectual disability and consideration of the appropriateness of the information currently provided. In this article, we report the results of a pre-COVID-19 qualitative study exploring the provision and use of accessible information to support the healthcare inclusion of individuals with an intellectual disability. A total of 35 clinicians participated in focus group discussions, and 10 people with intellectual disabilities and 10 carers were interviewed regarding their experiences of using accessible health-related information. Qualitative data analysis using a framework approach high...
Profiling health information of People with Intellectual Disabilities -An analytical study
International Conference on Evidence in Global Disability and Health- London School of Hygiene & Tropical Medicine & IIPH, 2018
Background: People with Intellectual Disabilities suffer from more physical and mental health problems and often die younger compared to general population. There are many causes like discrimination, less access to health services, diagnostic over shadowing, cognitive and communication disabilities, and challenging behaviours results in severe health vulnerabilities among them. Analysing the available data is crucial in identifying the health needs of people with Intellectual Disabilities. This helps plan better preventive care, design individualised health care programmes, and improve organisational and public policy. Methods: This study is an outcome a systematic analysis of the available data in a multipurpose rehabilitation care unit for an academic year; 2016-17. Records of special education and other rehabilitation therapy services are analysed; attendance of each individual as the primary reference point followed by the interviews of special educators and rehabilitation therapists. Results: Of the total 54% shown up low attendance, 46% have one or the significant health problem; 8% suffered from epilepsy, 8% behavioural related problems, 8% GI related illness, 6% thyroid related problems, 4% accidental injuries, 2% Eye infections, 2% Ear infections, 2% dental , 2% obesity and another 4% recurrent fevers of unknown aetiology. Conclusions: Profiling health problems of people with Intellectual Disabilities helps provide better care, reduce irregularity in receiving rehabilitation services, better acquisition of skills and abilities required for independent living, better Quality of Life of them and their families. Data available in the records of rehabilitation facility and interviews of rehabilitation professionals are the important sources of information to analyse and understand the severity and type of health problems of the people with Intellectual Disabilities. Organisations engaged in disability rehabilitation can take up this activity periodically. A structured surveillance system in rehabilitation organisations to track the health of persons with intellectual disabilities is suggested.
Frontiers in Health Services
Persons with intellectual and developmental disabilities (IDD) live 20 fewer years than the average person and almost 40% of their deaths are from preventable causes. They suffer from well-documented disparities in health and healthcare, and much of this inequity is rooted in information transfer failures between patients, their caregivers, and their healthcare providers. Tools to improve communication between these stakeholders, such as health checks and hand-held health records, or health passports, have been implemented in Europe, Australia and Canada with mixed results, and there are no standard information tools currently in widespread use in the U.S. We review the evidence of the effectiveness of these tools, as well as their barriers to adoption, to inform proposed development of next-generation information transfer tools most useful to patients with IDD and their healthcare providers. The repair of health information transfer failures will be a major step toward achieving he...
Disability and Rehabilitation: Assistive Technology, 2016
Access to residential settings for people with intellectual disabilities (ID) contributes to their social participation, but presents particular challenges. Assistive technologies can help people perform activities of daily living. However, the majority of the computerized solutions offered use guidance modes with a fixed, unchanging sequencing that leaves little room for self-determination to emerge. The objective of the project was to develop a flexible guidance mode and to test it with participants, to describe their information organization methods. This research used a descriptive exploratory design and conducted a comparison between five participants with ID and five participants with no ID. The results showed a difference in the information organization methods for both categories of participants. The people with ID used more diversified organization methods (categorical, schematic, action-directed) than the neurotypical participants (visual, action-directed). These organization methods varied depending on the people, but also on the characteristics of the requested task. Furthermore, several people with ID presented difficulties when switching from virtual to real mode. These results demonstrate the importance of developing flexible guidance modes adapted to the users' cognitive strategies, to maximize their benefits. Studies using experimental designs will have to be conducted to determine the impacts of more-flexible guidance modes.
We investigated the long-term effects of an information and communication technology (ICT) training programme for people with intellectual disabilities (ID). A community-based ICT training programme was designed to enhance the computer skills of people with ID and prepare them to make use of ICT in their daily life. Of the 100 who had participated in the original ICT training programme, 59 of them and their caregivers agreed to participate in the follow-up interview. A computer skills checklist was used to assess the ICT competence of the participants before training, after training, and at the 6-month follow-up assessment. All caregivers were interviewed at the 6-month follow-up session to explore the use of ICT by people with ID and their needs for further training. Results from repeated measures ANOVA showed that participants maintained at the 6-month follow-up the basic ICT skills that they acquired during training [F = 13.86, p < 0.001]. Caregivers reported that participants spent more time in using the computers, but still needed occasional guidance. They also reported a need to advance their ICT skills beyond the basic computer training. We concluded that ICT training for people with ID would help them in maximizing the benefits of information technology via computers. #
Health expectations : an international journal of public participation in health care and health policy, 2016
The proliferation of "accessible information" for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. To review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach. Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. We organized the papers into five groups according to similarity in authors...
Health Promotion …, 2004
Two per cent of people in Australia have intellectual disability and the adults in this population often have poor health status. This poor health can be partly attributed to communication difficulties encountered by people with intellectual disability and also health professionals in consultation settings. The design and development processes of an educational intervention to improve communication between patients, general practitioners (GPs) and also advocates in a population of adults with intellectual disability are described. The design process was collaborative and involved adults with intellectual disability, GPs, parents, support workers and other professionals. It was a nine-step development process and led to the final communication tool package, the ask (advocacy skills kit) 5-year health diary and educational session. As a result of the collaborative design and development processes, this diary included qualities not found in most other medical record keeping systems: visual appeal, advice on how to be a health advocate, utility for a range of users, privacy, portability and sufficient capacity to record personal patient information which enhanced communication between doctor, patient and advocate. It is proving to be very popular. Clear implications were found for applying established criteria and incorporating the needs of users in the design of educational interventions in the intellectually disabled population. Health promotion tools aiming to improve the current poor health status of adults with intellectual disability should be developed further.