ABSTRACT
INTRODUCTION: Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life. OBJECTIVES: This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD. METHODS: This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice. RESULTS: The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report. CONCLUSION: Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.
Subject(s)
Developmental Disabilities , Intellectual Disability , Child , Developmental Disabilities/therapy , Humans , Intellectual Disability/diagnosis , Intellectual Disability/therapy , Language , Pain Measurement , Quality of LifeABSTRACT
INTRODUCTION: Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life. OBJECTIVES: This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD. METHODS: This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice. RESULTS: The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report. CONCLUSION: Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.
ABSTRACT
AIM: To investigate the application of skin-to-skin care (SSC) in the Nordic countries, the existence of guidelines for SSC and the attitudes of neonatal staff towards SSC. METHODS: One questionnaire was distributed at unit level and one at staff level in all Nordic neonatal intensive care units (n = 109). RESULTS: The unit questionnaire was answered by 95 (87%) units and the staff questionnaire by 1446 staff members (72%). All units offered SSC to various degrees, but guidelines only existed at 47% of them. Units in Denmark, Norway and Sweden seemed to use SSC earlier, longer and in more medically complicated situations than units in Finland and Iceland. Seventy-seven per cent of the units had private rooms where parents and infants could stay together, still the physical environment of the units limited the use of SSC. Medical risks were considered the main barrier for further implementation of SSC, while general development and early interaction were the most frequently mentioned benefits. CONCLUSION: Skin-to-skin care is implemented in all Nordic neonatal units, but offered to various degrees, to various populations and to varying extents. Danish, Norwegian and Swedish units are offering SSC more extensively than units in Finland and Iceland.
