Health Disparities and Intellectual Disabilities

 
 
Academic Press
  • 1. Auflage
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  • erschienen am 29. Juli 2015
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  • 284 Seiten
 
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International Review of Research in Developmental Disabilities is an ongoing scholarly look at research into the causes, effects, classification systems, and syndromes of developmental disabilities. Contributors come from wide-ranging perspectives, including genetics, psychology, education, and other health and behavioral sciences.
  • Provides the most recent scholarly research in the study of developmental disabilities
  • A vast range of perspectives is offered, and many topics are covered
  • An excellent resource for academic researchers
2211-6095
  • Englisch
  • San Diego
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  • USA
Elsevier Science
  • 4,38 MB
978-0-12-802484-3 (9780128024843)
0128024844 (0128024844)
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  • Front Cover
  • International Review of Research in Developmental Disabilities
  • Serial Editors
  • International Review of Research in Developmental DisabilitiesHealth Disparities and Intellectual DisabilitiesEdited byChri ...
  • Copyright
  • Contents
  • Contributors
  • Preface
  • Introduction: Health Disparities, Health Inequity, and People with Intellectual Disabilities
  • References
  • Health Inequity and Children with Intellectual Disabilities
  • 1. Introduction
  • 2. The Nature and Extent of Health Inequities Experienced by Children with Intellectual Disabilities
  • 3. The Determinants of Inequities in Child Health
  • 3.1 Social Stratification and SEP
  • 3.2 Differential Exposure
  • 3.3 Differential Vulnerability and Resilience
  • 4. SEP and Children with Intellectual Disabilities
  • 4.1 The Association between SEP and Intellectual Disabilities
  • 4.2 The Association between SEP and Health among Children with Intellectual Disabilities
  • 4.3 Physical Health
  • 4.4 Mental Health
  • 4.5 Health Behaviors
  • 5. Risk of Exposure to Specific Material and Psychosocial Hazards
  • 5.1 Nutrition
  • 5.2 Housing Conditions
  • 5.3 Environmental Toxins
  • 5.4 Violence
  • 5.5 Parental Well-Being, Parenting, and Family Functioning
  • 5.6 Life Events
  • 5.7 Summary
  • 6. Vulnerability and Resilience
  • 6.1 Individual Capabilities
  • 6.2 Individual Characteristics
  • 6.3 Positive Relationships
  • 6.4 Access to Resources
  • 6.5 Differential Resilience?
  • 7. Conclusions
  • Acknowledgments
  • References
  • Discrimination and the Health of People with Intellectual Disabilities
  • 1. Introduction
  • 2. Conceptual and Methodological Issues
  • 2.1 Conceptualizing Interpersonal or Individual Discrimination
  • 2.2 Methodological Issues
  • 2.2.1 Self-Reporting of Discrimination Requires an Understanding of What Is "Fair"
  • 2.2.2 Other Factors Influence Self-Reporting
  • 2.2.3 Limitations to the Qualitative Evidence Base
  • 3. Discrimination and Health
  • 4. Intellectual Disability: Exposure to Interpersonal Discrimination
  • 4.1 Public Attitudes
  • 4.2 The Prevalence of Exposure to Interpersonal Discrimination
  • 4.3 The Experience of Interpersonal Discrimination
  • 5. Intellectual Disability: The Association between Discrimination and Health
  • 6. Interventions to Reduce the Exposure to or Impact of Interpersonal Discrimination
  • 7. Priorities for Future Research
  • 7.1 What Is the Nature and Extent of Interpersonal Discrimination Experienced by People with Intellectual Disabilities?
  • 7.2 Who Is Most at Risk of Experiencing Different Forms of Interpersonal Discrimination?
  • 7.3 How Does This Vary across Time and Place?
  • 7.4 In What Ways Do People with Intellectual Disabilities Change Their Lives in Response to Interpersonal Discrimination?
  • 7.5 What Is the Impact of Interpersonal Discrimination on the Health and Well-being of People with Intellectual Disabilities?
  • 7.6 Why Are Some People with Intellectual Disabilities More Resilient and Others More Vulnerable to the Negative Outcomes Assoc ...
  • 7.7 What Works to Reduce Exposure to Interpersonal Discrimination and to Help People Be More Resilient?
  • References
  • Health Surveillance and People with Intellectual Disabilities
  • 1. Introduction
  • 2. Case Studies
  • 2.1 Improving Health and Lives: England's Specialist Public Health Observatory on Intellectual Disabilities for England
  • 2.1.1 Background
  • 2.1.2 Description
  • 2.1.2.1 Public Health Knowledge and Intelligence
  • 2.1.2.2 Identifying and Addressing Gaps in Information and Knowledge
  • 2.1.2.3 Advice and Support
  • 2.1.3 Barriers to/Facilitators of Impact
  • 2.2 Expanding Public Health Surveillance for People with Intellectual and Developmental Disabilities in the USA
  • 2.2.1 Background
  • 2.2.2 Extant Health Assessment Tools
  • 2.2.3 CDC Activities Associated with Expanding Surveillance for Intellectual Disabilities and Developmental Disabilities
  • 2.2.4 Summary
  • 2.3 Health-Care Access and Developmental Disabilities Research Program in Ontario, Canada
  • 2.3.1 Background
  • 2.3.2 Description
  • 2.3.3 Barriers to/Facilitators of Impact
  • 3. Methodological Challenges
  • 3.1 Identifying People with Intellectual Disabilities in Administrative Databases
  • 3.2 Identifying People with Intellectual Disabilities in Population-Based Surveys
  • 3.2.1 Data Linkage
  • 3.2.2 Cognitive Testing
  • 3.2.3 Self- or Informant Report
  • 3.2.4 Sampling Issues
  • 3.3 Specific Intellectual Disability Surveys
  • 3.4 Challenges in Measuring Health
  • 4. Conclusions: From Health Surveillance to Policy Impact?
  • 5. Disclaimer
  • References
  • Adults with Cerebral Palsy: Physical and Mental Health Issues and Health Service Use Patterns
  • 1. Introduction
  • 2. Methods
  • 3. Results
  • 3.1 Chronic Physical Health Issues in Adults with CP
  • 3.2 Mental Health Issues in Adults with CP
  • 3.3 Health Service Use in Adults with CP
  • 4. Discussion
  • 4.1 Health Disparities among Adults with CP
  • 4.1.1 Adults with CP and Children with CP
  • 4.1.2 Adults with CP and Other Clinical Populations
  • 4.1.3 Adults with CP and the General Population
  • 5. Conclusions
  • Acknowledgments
  • References
  • A Review of Health Surveillance in Older Adults with Intellectual and Developmental Disabilities
  • 1. Introduction
  • 2. Part 1: Literature Review
  • 2.1 Population Aging
  • 2.1.1 Changes in Life Expectancy
  • 2.1.2 Changes in Living Arrangements
  • 2.2 Aging and Health
  • 2.2.1 Multimorbidity
  • 2.2.2 Frailty
  • 2.3 Aging and Health Care
  • 2.3.1 Hospital Services
  • 2.3.2 Community-Based Health Care
  • 2.3.3 Long-Term Care Services
  • 2.3.4 Prescription Medication
  • 2.4 Health Surveillance of Aging with IDD
  • 2.4.1 Ongoing Surveys: National Core Indicators in the United States of America
  • 2.4.2 Registries: Denmark and Leicestershire, England
  • 2.4.2.1 Denmark
  • 2.4.2.2 Leicestershire
  • 2.4.2.3 Finnish Survey
  • 2.4.2.4 HA-ID in the Netherlands
  • 2.4.2.5 POMONA in Europe
  • 2.4.3 Confidential Inquiry into Premature Deaths in the UK
  • 2.4.4 Indicators for Health Surveillance of Aging in Intellectual and Developmental Disabilities
  • 3. Part 2: A Canadian Initiative
  • 3.1 Objectives
  • 3.2 Methods
  • 3.2.1 Cohort Creation
  • 3.2.2 Indicators
  • 3.2.3 Analysis
  • 3.3 Results
  • 3.3.1 The Cohort
  • 3.3.2 Health Care Use (Home Care and Long-Term Care)
  • 3.3.3 Frailty and Medical Instability
  • 3.4 Discussion
  • 3.5 Conclusion
  • 3.5.1 Special Considerations
  • 3.5.2 Future Directions for Surveillance in Ontario and Beyond
  • 3.5.2.1 Ontario
  • 3.5.2.2 Canada
  • 3.5.2.3 International
  • Acknowledgments
  • References
  • Identifying and Addressing Disparities in Mortality: US and UK Perspectives
  • 1. Introduction
  • 2. Assessing Patterns in Mortality
  • 2.1 Overall Mortality
  • 2.1.1 Life Expectancy
  • 2.1.2 Crude Mortality Rate
  • 2.1.3 Standardized Mortality Ratios
  • 2.2 Mortality and Age
  • 2.3 Mortality and Gender
  • 2.4 Mortality and Cause of Death
  • 2.4.1 Immediate versus Underlying Cause of Death
  • 2.4.2 Trends over Time in Causes of Death
  • 2.4.3 Common Causes of Mortality in People with Intellectual and Developmental Disabilities
  • 2.4.3.1 Cancer
  • 2.4.3.2 Respiratory Diseases
  • 2.4.3.3 Nervous Disorders: Seizures
  • 2.4.3.4 Nervous Disorders: Dementia and Alzheimer's Disease
  • 2.4.3.5 Injuries
  • 3. Potentially Modifiable Determinants of Mortality
  • 3.1 Premature Mortality in People with Intellectual Disabilities
  • 3.1.1 Challenges with Traditional Measures
  • 3.2 Preventable and Amenable Mortality
  • 3.2.1 Risk Factors for Premature Mortality
  • 3.2.1.1 Biological Factors
  • 3.2.1.2 Social Factors
  • 4. Reflections on Current Challenges
  • 4.1 The Quality of Available Mortality Data
  • 4.1.1 Accuracy of Death Certificates
  • 4.1.1.1 The Accuracy of Death Certificates for People with Intellectual and Developmental Disabilities
  • 4.1.1.2 Limitations of the Use of Underlying Causes of Death
  • 4.1.1.3 Autopsies or Postmortem Investigations
  • 4.2 The Quality of Available Demographic Data
  • 4.2.1 Challenges in Defining and Capturing Level of Disability
  • 4.2.2 Identification of People with Intellectual and Developmental Disabilities through Death Certificates
  • 4.3 The Value of Individual Case Reviews
  • 5. Future Priorities
  • 5.1 The Identification of People with Intellectual and Developmental Disabilities in National Population-Level Data Sets
  • 5.2 Addressing Current Inequalities in Health in People with Intellectual and Developmental Disabilities
  • 5.3 The Collection of Internationally Comparable Data about Mortality
  • References
  • Index
  • Contents of Volumes in This Series
Chapter One

Introduction


Health Disparities, Health Inequity, and People with Intellectual Disabilities


Chris Hatton* and Eric Emerson*,§,1     *Centre for Disability Research, Lancaster University, Lancaster, Lancashire, UK     §Centre for Disability Research and Policy, University of Sydney, NSW, Australia
1 Corresponding author: e-mail address: eric.emerson@lancaster.ac.uk 

Abstract


In this chapter, we provide a brief overview of what is known about disparities in the health of people with intellectual disabilities when compared to those in their non-intellectual disabled peers and current approaches to conceptualizing the causes of these differences. We then provide an overview of the six chapters that form the core of this edited volume on the health disparities (and inequities) experienced by people with intellectual disabilities.

Keywords


Developmental disabilities; Health; Health disparities; Health inequity; Health measurement; Intellectual disability Extensive evidence from high-income countries in Europe, North America, and Australasia indicates that people with intellectual disabilities experience substantially poorer health outcomes than their nonintellectually disabled peers (Anderson et al., 2013; Emerson & Hatton, 2014; Krahn & Fox, 2014; Krahn, Hammond, & Turner, 2006; O'Hara, McCarthy, & Bouras, 2010; Oeseburg, Dijkstra, Groothoff, Reijneveld, & Jansen, 2011; Prasher & Janicki, 2003; Scheepers, Kerr, O'Hara, Bainbridge, & Cooper, 2005; Sutherland, Couch, & Iacono, 2002; Taggart & Cousins, 2014; Van Schrojenstein Lantman-de Valk, 2005). They are more likely to die at an earlier age (e.g., Bittles et al., 2002; Emerson, Glover, Hatton, & Wolstenholme, 2014; Glover & Ayub, 2010; Heslop et al., 2014; Hollins, Attard, van Fraunhofer, McGuigan, & Sedgwick, 1998; McGuigan, Hollins, & Attard, 1995), to have poor rated general health (e.g., Emerson & Hatton, 2007a, 2007c; Emerson, Hatton, Robertson, & Baines, 2014; Haider, Ansari, Vaughan, Matters, & Emerson, 2013; Havercamp & Scott, 2015; Larson, Lakin, Anderson, & Kwak, 2001), and to live with a wide range of complex health conditions such as, epilepsy (e.g., Beange, McElduff, & Baker, 1995; Cardoza & Kerr, 2010; Schieve et al., 2012; Straetmans, van Schrojenstein Lantman-de Valk, Schellevis, & Dinant, 2007); sensory impairments (e.g., Beange et al., 1995; Nielsen, Skov, & Jensen, 2007; Oeseburg et al., 2011; van Splunder, Stilma, Bernsen, & Evenhuis, 2006); respiratory disorders (e.g., Oeseburg et al., 2011; Schieve et al., 2012; Straetmans et al., 2007); obesity (e.g., Beange et al., 1995; Melville, Hamilton, Hankey, Miller, & Boyle, 2007); diabetes (e.g., Straetmans et al., 2007); oral health problems (e.g., Davies, 2012; Morgan et al., 2012); disorders of the digestive system (e.g., Böhmer et al., 1999; Davis, 2010; Schieve et al., 2012; Straetmans et al., 2007); osteoporosis (e.g., Center, Beange, & McElduff, 1998; Jaffe, Timell, & Gulanski, 2001); mental health problems (e.g., Cooper, Smiley, Morrison, Williamson, & Allan, 2007; Einfeld, Ellis, & Emerson, 2011; Emerson, 2011). Historically, the poorer health of people with intellectual disabilities has been primarily understood as being caused by the biological bases of syndromes or conditions associated with intellectual disability. More recently, these disparities in health status have begun to be conceptualized as examples of health inequity, differences in health status that, being caused by environmental factors beyond the control of individuals concerned, are avoidable, unfair, and unjust (Emerson & Durvasula, 2005; Emerson & Hatton, 2014; Graham, 2005; Krahn et al., 2006; Ouellette-Kuntz, 2005). Evidence that supports an inequity perspective has emerged from disparate sources including investigations by government agencies on the health and healthcare of people with intellectual disabilities (e.g., Disability Rights Commission, 2006; Michael, 2008; NHS Health Scotland, 2004; Parliamentary and Health Service Ombudsman and Local Government Ombudsman, 2009; US Department Health & Human Services, 2002) and research studies that have investigated such issues as access to appropriate healthcare and health promotion programs (Alborz, McNally, & Glendinning, 2005; Hayden, Kim, & DePaepe, 2005; Norwood & Slayton, 2013; Osborn et al., 2012; Parish & Saville, 2006) and the quality of management of health conditions among people with intellectual disabilities (Balogh, Brownell, Ouellette-Kuntz, & Colantonio, 2010; Bowley & Kerr, 2000; Janicki et al., 2002; Jensen, Taylor, & Davis, 2013; Lunsky et al., 2014; McDermott et al., 2005); lifestyle factors (e.g., lack of exercise and poor nutrition) associated with poorer health among people with intellectual disabilities (Bartlo & Klein, 2011; Robertson, Emerson, Baines, & Hatton, 2014; Robertson et al., 2000); exposure to environmental factors (e.g., poverty and violence) associated with poorer health among people with intellectual disabilities (Emerson, 2010, 2013; Emerson & Hatton, 2007b, 2007c, 2007d; Emerson, Hatton et al., 2014); The aim of this volume of International Review of Research in Developmental Disabilities is to summarize what is known (and what needs to be known) about the impact of this "cascade of disparities" (Krahn et al., 2006) on the health and well-being of people with intellectual disabilities. In Chapter 2, Emerson and Spencer review the existing knowledge about the determinants of health inequities experienced by children with intellectual disabilities. They argue that the limited evidence that is available indicates that children with intellectual disabilities are at an increased risk of exposure to all of the major categories of social determinants of poorer physical and mental health. They are more likely to live in households characterized by low socioeconomic position and poverty, and to be exposed to recurrent poverty. They are more likely to be exposed to a wide range of material and psychosocial hazards that are detrimental to their health, including inadequate nutrition, poor housing conditions, exposure to environmental toxins, family, peer and community violence, poor parenting and family instability. They are also less likely to have access to the resources necessary to build resilience in the face of adversity. However, the literature in this area is highly variable in its scope and quality. In order to better identify and understand health inequities in this group of children, they suggest three priorities for future research: (1) longitudinal studies using the extensive network of cohort studies in high-income countries to elucidate pathways and mechanisms in the association of low family socioeconomic position with childhood intellectual disability and to strengthen the evidence base on the combined impact of socioeconomic position and intellectual disability on health and well-being across the life course; (2) cross-sectional and longitudinal studies in different country settings to strengthen the evidence base in areas where it is weak; (3) controlled interventions designed to test approaches to reducing discrimination and strengthening resilience at both an individual and societal level. In Chapter 3, Lauer, Heslop, and Hoghton present a comprehensive review of premature mortality among people with intellectual disabilities, with a particular focus on data from the United States and the United Kingdom. They highlight some of the major challenges to obtaining mortality data concerning people with intellectual disabilities, including reliably identifying people with intellectual disabilities in administrative information systems (see also Chapter 4), and obtaining consistent and valid information on the cause of death. Whilst life expectancy is increasing for people with intellectual disabilities, it is not approaching the life expectancy for the rest of the population, with median age of death at least 20 years younger for people with intellectual disabilities compared to that for the general population. The major causes of death are similar to those for the general population but more diverse among people with intellectual disabilities. Furthermore, much of the excess mortality associated with many causes of death for people with intellectual disabilities is preventable through better access to effective healthcare and support, or amenable through better public health measures to improve healthy lifestyles. The authors conclude with priorities for ensuring better mortality data, and its effective use to drive improvements in healthcare for people with intellectual disabilities. In Chapter 4, Hatton and colleagues use case studies from the United States, Canada, and England to frame a...

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