Pain in Children and Adults with Developmental Disabilities - Softcover

Softcover

ISBN 10: 1557668698 ISBN 13: 9781557668691

Publisher: Brookes Publishing, 2006

Synopsis

For clinicians, recognizing and correctly interpreting any patient's expression of pain is a challenge — but a necessity for timely and appropriate health care. If that patient has a developmental disability and self-report is unavailable, that challenge is magnified. That's why every clinician needs this landmark volume. The first to synthesize research about this critical topic, this book will help ensure that healthcare professionals are better prepared to assess and manage pain in children and adults with a range of disabilities. International experts cover quality of life concerns, health care issues, and best practices in pain management for individuals from infancy through adulthood, giving readers up-to-date information on

• the functional impact of pain on a person's quality of life
• how pain might instigate or intensify challenging behavior
• issues surrounding pharmacological treatment of pain, such as selecting medication, considering adverse interactions with other medications, and monitoring effects
• neurobiological and neuropsychological processes involved in pain
• current epidemiological research on pain in individuals with disabilities
• pain in people with specific developmental disabilities: motor disorders, cognitive impairments, social/emotional impairments, and other neurological disorders
• current assessment strategies and technologies
• challenges in pharmacological management of pain
• the future of pain management in research, policy, and practice

Essential reading for a wide range of professionals across disciplines — including physicians, nurses, psychologists, rehabilitation therapists, direct care staff, and special educators — this research-based book will help professionals deliver the best possible pain management and improve the quality of life for children and adults with developmental disabilities.

About this title

About the Author:

Tim F. Oberlander, M.D., FRCPC, is a developmental pediatrician at British Columbia Children’s Hospital (BCCH) in Vancouver. He is Associate Professor in the Department of Pediatrics, University of British Columbia (UBC), and the inaugural recipient of the R. Howard Webster Professorship in Child Development. He is supported by a Senior Scholar Award from the Human Early Learning Partnership (HELP) at UBC and is a faculty member of the Centre for Community Child Health Research. Dr. Oberlander completed medical school training at Queen’s University in Kingston and a residency in pediatrics at Montreal Children’s Hospital/McGill University. Fellowship training included developmental pediatrics in Montreal and pediatric pain management in Boston at Children’s Hospital. He joined the UBC Department of Pediatrics in 1993 and is a clinician with the Child Development and Rehabilitation Program as well as an attending physician with the Complex Pain Service at BCCH. As a clinician he works with children with complex pain and developmental disabilities as well as infants and children with prenatal alcohol and drug exposure. Dr. Oberlander’s research focuses on two areas: The first is directed at understanding the influence of early biological and environmental factors on childhood development. This work seeks to understand how prenatal exposure to psychotropic medications and drugs (e.g., antidepressants, alcohol) and depressed maternal mood alter the developing brain and contribute to development and behavior during infancy and childhood. A second area of research focuses on understanding pain in children with developmental disabilities. With colleagues he is studying pain reactivity in infants and children following neonatal intensive care and pain in children with cognitive and social impairments. Dr. Oberlander’s work has been supported by funding from the Canadian Institutes of Health Research, Michael Smith Foundation for Medical Research, HELP, and the March of Dimes Foundation.

Primary research activities of Frank J. Symons, Ph.D., are supported by the National Institute of Child Health and Human Development (NICHD), and they focus on improving the assessment and treatment of severe self-injurious behavior among individuals with developmental disabilities and pervasive developmental disorders. Dr. Symons was a research scientist at the Frank Porter Graham Child Development Center at the University of North Carolina at Chapel Hill and a postdoctoral fellow at the John F. Kennedy Center at the Peabody College of Vanderbilt University in Nashville, Tennessee. He is the co-author of Behavioral Observation: Technology and Applications in Developmental Disabilities (Paul H. Brookes Publishing Co., 2000).

Dick Sobsey, Ed.D., Professor Emeritus, Educational Psychology, University of Alberta, Edmonton, Alberta, Canada

Dr. Sobsey has worked with children and adults with severe and multiple disabilities since 1968 as a nurse, teacher, and researcher. He taught courses on teaching students with severe disabilities and inclusive education at the University of Alberta from 1982 to 2005. He also served as Director of the J.P. Das Centre on Developmental and Learning Disabilities from 1994‐2008 and the John Dossetor Health Ethics Centre from 2006 to 2011. He is the father of an adult son with severe and multiple disabilities due to MECP2 (methyl CpG binding protein 2) duplication syndrome.

Excerpt. © Reprinted by permission. All rights reserved.:

Until recently, pain in people with developmental disabilities received very little scientific attention. Individuals with developmental disabilities have been systematically excluded as study participants from research studies on pain, and little was known about the pain in daily life, the expression of pain in the absence of words, or the challenges of pain management in the context of a substantial neurological injury. Expression of pain by individuals with developmental disabilities can be ambiguous, and its recognition by caregivers and health care providers can be highly subjective. Even when pain- specific behaviors are present, such behaviors may be regarded as altered or blunted, may be confused with other sources of generalized stress or arousal, or, in the extreme, may be misinterpreted as a behavior disorder of psychiatric origin. This presents a tremendous challenge to the individual, caregiver, clinician, and researcher alike.

Pain is a universal biological experience that is essential to promoting health (it alerts us to danger), but it is also associated with tremendous suffering that compromises the quality of life when underrecognized or poorly treated. There is no reason to believe that pain is any less frequent in the lives of those with developmental or acquired disabilities that alter the way they communicate or that such individuals would be insensitive or indifferent to pain. Regardless of the degree of the disability and the underlying neurological condition, functional limitations frequently confound the presentation of pain that is often a part of daily life for individuals with developmental disabilities. How can pain be assessed and managed when typical means of verbal or nonverbal communication or cognition are altered or absent? In the absence of easily recognized verbal or motor-dependent forms of communication, it remains uncertain if the pain experience itself is different or only the expressive manifestations are altered. Indeed, without easily recognizable means of communication or motor skills, pain may not be recognized or treated. In spite of the potential for altered nociception and pain expression, there is no evidence that individuals with cognitive or motor impairments are spared any of the miseries of a noxious experience. In this book, we review progress and a number of key challenges facing this field. These include aspects of the definition of pain as it relates to the unique challenges faced by individuals with developmental disabilities, the epidemiology and functional impact of pain in people with disabilities, issues in the management of pain, pain in individuals with self-injurious and severe behavior disorders, and the difficulties of assessing pain the history and changing definition of pain in general and in relation to developmental disabilities. Chapter 3 provides an essential forum on ethical issues raised by historical problems created by the conventional definition of pain, including a discussion of research participation and health care implications. Chapter 4 is a primer laying out the detailed phenomenology of pain in relation to underlying brain mechanisms.

The second section (Pain: Epidemiological, Developmental, and Functional Issues) discusses what is known about the prevalence and nature of pain conditions in developmental disabilities and provides a review of developmental and functional issues posed by chronic pain and disability. Our poor understanding of the epidemiology of pain across the spectrum of disabilities continues to limit research and clinical care. What is known suggests that pain is common and poorly treated among adults and children with disabilities. There is good reason to believe that pain is much more a part of the daily lives of most of these individuals than is the case for people without disabilities. At present, there are no satisfactory epidemiological data regarding the incidence or prevalence of chronic or acute pain in children with disabilities. Although the etiologies of the underlying conditions vary, making this a heterogeneous population, the additive effects of pain in the presence of a disability are common to many of the conditions associated with a developmental disability. Therefore, even by crude, indirect methods, it might be reasonable to estimate that pain is more common in children with developmental disabilities than among children in general, highlighting this as an area for urgent discussion and future study. Similarly, efforts to understand pain require an evaluation of the functional impact of the pain, its role in quality of life, and its compounding interaction with the disability itself. Studies of pain typically focus on describing symptoms, duration, and intensity of pain without accounting for the functional consequences of the symptom, even though pain is likely to have a major impact on the individual. The measurement of functional disability related to adult pain outcomes has received considerable attention because of issues related to work and cost-related effects; however, analogous research in pediatric and adolescent populations with developmental disabilities is limited, further highlighting the urgent need for a critical evaluation of what we know and what we need to know.

The third section (Pain: Assessment and Treatment Issues) focuses on the myriad research and clinical complexities in reliably and validly assessing pain in developmental disabilities and in the delivery of efficacious and effective treatment. Typically the "afferent component" of pain is perceived or experienced before "efferent responses" such as self-report or behavior changes occur. Feeling and reporting pain are often parallel and related phenomena, but self-report, nonverbal expression, and evidence of tissue damage can be highly discordant, particularly among individuals with disabilities. Many developmental disabilities are associated with painful conditions that require recurrent noxious and invasive procedures, resulting in increased pain during daily life. This is compounded by difficulties in communicating distress and by motor impairments inhibiting actions needed to solicit help, which in turn may lead to increased incidence, severity, and duration of pain. Thus, current knowledge about measurement of pain in developmental disability, including a critical examination of state-of'the-art assessment technologies, is reviewed for pediatric and adult populations. Finally, there is evidence that individuals may be denied appropriate and timely pain management because caregivers may not accept that the pain is real when the ability to communicate the experience with discrete words and motor movements is limited. Consequently, detailed information has been included to provide a balanced review of available treatment and pain management options and their corresponding empirical support.

In sum, this book aims to raise topics and review current knowledge to stimulate further discussion about, recognition of, and research into the problem of pain in individuals with developmental disability. If this volume improves clinical practice, then we will have accomplished our goal. The chapters were written by recognized international authorities, many of whom have pioneered work in the assessment and management of pain in pediatric and other populations. We believe this edited volume addresses one of the most profound aspects of developmental human experience, and it is our hope that it will be a valuable addition to a growing literature.

Excerpted from Chapter 1 of Pain in Children and Adults with Developmental Disabilities,edited by Tim F. Oberlander, M.D., & Frank J. Symons, Ph.D.

Copyright © 2006 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

About this edition

• Publisher: Brookes Publishing
• Publication date: 2006
• ISBN 10: 1557668698
• ISBN 13: 9781557668691
• Binding: Paperback
• Edition number: 1
• Number of pages: 264
• Editor: Oberlandander M.D. Tim, Symons M.Ed. Ph.D. Dr. Frank J.