Assessing pain in children with intellectual disabilities

Children with intellectual and developmental disabilities suffer more often from pain than their typically developing peers. Their pain can be difficult to manage, and assessment is often complicated by their limited communication skills, multiple complex pain problems and the presence of maladaptive behaviours. However, current research does provide some guidance for assessing their pain. Although self-report is an alternative for a small number of higher-functioning children, observational measures have the most consistent evidence to support their use at this time. For this reason, the Non-communicating Children’s Pain Checklist – Postoperative Version is recommended for children and youth 18 years of age or younger. However, other measures should be consulted for specific applications. Changes in function and maladaptive behaviour should also be considered as possible reflections of pain. In addition, children’s coping skills should be considered because improving these may reduce the negative impact of pain

Parental assessment of pain coping in individuals with intellectual and developmental disabilities

International audienc

Stratégies de faire face à la douleur chez des adolescents atteints de déficience intellectuelle

International audienceL’objectif de cette étude est de comprendre les mécanismes utilisés par les adolescents atteints de déficience intellectuelle lorsqu’ils font face à une douleur et en particulier s’ils changent de stratégie aux alentours de la 15e année comme le font les adolescents typiques. La population est constituée de 56 adolescents de 13 à 17 ans (m = 15,3), dont 28 adolescents atteints de déficience intellectuelle légère à moyenne, et 28 adolescents typiques appariés en genre et âge chronologique. Cette étude est qualitative et utilise l’entretien semi-directif afin de saisir l’expérience de la personne en se centrant sur les éléments subjectifs. La répartition des stratégies évoquées est significativement différente dans les deux populations. Les adolescents typiques passent de stratégies centrées sur l’émotion à des stratégies centrées sur le problème aux alentours de 15 ans. Cette modification de la répartition des stratégies en fonction de l’âge n’apparaît pas de façon significative chez les adolescents atteints de déficience intellectuelle. Les adolescents atteints de déficience intellectuelle disposent donc d’un potentiel qui semble avoir été sous-estimé jusqu’alors. Néanmoins, la présence d’un proche semble nécessaire pour les accompagner dans le choix et la mobilisation d’une stratégie adaptée, notamment lorsque la douleur est incontrôlable par le sujet lui-même

Stratégies de faire face à la douleur chez des adolescents atteints de déficience intellectuelle

International audienceL’objectif de cette étude est de comprendre les mécanismes utilisés par les adolescents atteints de déficience intellectuelle lorsqu’ils font face à une douleur et en particulier s’ils changent de stratégie aux alentours de la 15e année comme le font les adolescents typiques. La population est constituée de 56 adolescents de 13 à 17 ans (m = 15,3), dont 28 adolescents atteints de déficience intellectuelle légère à moyenne, et 28 adolescents typiques appariés en genre et âge chronologique. Cette étude est qualitative et utilise l’entretien semi-directif afin de saisir l’expérience de la personne en se centrant sur les éléments subjectifs. La répartition des stratégies évoquées est significativement différente dans les deux populations. Les adolescents typiques passent de stratégies centrées sur l’émotion à des stratégies centrées sur le problème aux alentours de 15 ans. Cette modification de la répartition des stratégies en fonction de l’âge n’apparaît pas de façon significative chez les adolescents atteints de déficience intellectuelle. Les adolescents atteints de déficience intellectuelle disposent donc d’un potentiel qui semble avoir été sous-estimé jusqu’alors. Néanmoins, la présence d’un proche semble nécessaire pour les accompagner dans le choix et la mobilisation d’une stratégie adaptée, notamment lorsque la douleur est incontrôlable par le sujet lui-même

Pain burden in children with cerebral palsy (CPPain) survey : Study protocol

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media

Pain burden in children with cerebral palsy (CPPain) survey: Study protocol

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media