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Pain

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Handbook of Intellectual Disabilities

Part of the book series: Autism and Child Psychopathology Series ((ACPS))

Abstract

People with developmental disabilities commonly experience pain and may be at a higher risk than the general population in this regard. Although pain relief is a human right, pain is frequently missed and discounted in this population. Limitations in cognitive abilities, communication, and comorbidities lend complexity to the expression and experience of pain in people with developmental disabilities. Starting with a general overview of pain, this chapter provides a comprehensive, up-to-date review of pain in people with developmental disabilities including incidence, prevalence, special considerations, and current issues. Pain assessment approaches, tools, and management strategies are reviewed and demonstrated through clinical case examples and research illustrations. Future research directions such as focusing on education and pain management are also discussed.

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Notes

  1. 1.

    Currently under review with a peer reviewed journal, this resource as developed by Genik this resource as developed by Genik, Millett, and McMurtry (2016) addresses initial feasibility and usability of the resource in respite care settings. Future work will also include implementation of this resource in secondary care settings.

References

  • American Academy of Pediatrics. (2001). The assessment and management of acute pain in infants, children, and adolescents. Pediatrics, 108(3), 793–797.

    Article  Google Scholar 

  • Baldridge, K. H., & Andrasik, F. (2010). Pain assessment in people with intellectual or developmental disabilities. AJN The American Journal of Nursing, 110(12), 28–35.

    Article  Google Scholar 

  • Bandstra, N. F., Johnson, S. A., Filliter, J. H., & Chambers, C. T. (2012). Self-reported and parent-reported pain for common painful events in high-functioning children and adolescents with autism spectrum disorder. The Clinical Journal of Pain, 28(8), 715–721.

    Article  Google Scholar 

  • Barney, C. C., Feyma, T., Beisang, A., & Symons, F. J. (2015). Pain experience and expression in Rett syndrome: Subjective and objective measurement approaches. Journal of Developmental and Physical Disabilities, 27(4), 417–429.

    Article  Google Scholar 

  • Beacroft, M., & Dodd, K. (2011). ‘I Feel Pain’–audit of communication skills and understanding of pain and health needs with people with learning disabilities. British Journal of Learning Disabilities, 39(2), 139–147.

    Article  Google Scholar 

  • Benini, F., Trapanotto, M., Gobber, D., Agosto, C., Carli, G., Drigo, P., et al. (2004). Evaluating pain induced by venipuncture in pediatric patients with developmental delay. The Clinical Journal of Pain, 20(3), 156–163.

    Article  Google Scholar 

  • Birnie, K. A., Chambers, C. T., Taddio, A., McMurtry, C. M., Noel, M., Riddell, R. P., & Shah, V. (2015). Psychological interventions for vaccine injections in children and adolescents: Systematic review of randomized and quasi-randomized controlled trials. The Clinical Journal of Pain, 31(Suppl 10), S72.

    Article  Google Scholar 

  • Bodfish, J. W., Harper, V. N., Deacon, J. R. & Symons, F. J. (2001). Identifying and measuring pain in persons with developmental disabilities: A manual for the Pain and Discomfort Scale (PADS).. Western Carolina Center Research Reports.

    Google Scholar 

  • Boerlage, A. A., Valkenburg, A. J., Scherder, E. J., Steenhof, G., Effing, P., Tibboel, D., & van Dijk, M. (2013). Prevalence of pain in institutionalized adults with intellectual disabilities: A cross-sectional approach. Research in Developmental Disabilities, 34(8), 2399–2406.

    Article  Google Scholar 

  • Bottos, S., & Chambers, C. T. (2006). The epidemiology of pain in developmental disabilities. In F. Symons & T. Oberlander (Eds.), Pain in children and Adults with Developmental Disabilities (pp. 67–87). Baltimore: Paul H. Brookes.

    Google Scholar 

  • Breau, L. M., & Burkitt, C. (2009). Assessing pain in children with intellectual disabilities. Pain Research and Management, 14(2), 116–120. https://doi.org/10.1155/2009/642352

    Article  Google Scholar 

  • Breau, L. M., & Camfield, C. S. (2011). Pain disrupts sleep in children and youth with intellectual and developmental disabilities. Research in Developmental Disabilities, 32(6), 2829–2840.

    Article  Google Scholar 

  • Breau, L. M., Camfield, C. S., McGrath, P. J., & Finley, G. A. (2003). The incidence of pain in children with severe cognitive impairments. Archives of Pediatrics & Adolescent Medicine, 157(12), 1219–1226.

    Article  Google Scholar 

  • Breau, L. M., Camfield, C. S., McGrath, P. J., & Finley, G. A. (2007). Pain’s impact on adaptive functioning. Journal of Intellectual Disability Research, 51(2), 125–134.

    Article  Google Scholar 

  • Berde, C. B., & Sethna, N. F. (2002). Analgesics for the treatment of pain in children. New England Journal of Medicine, 347(14), 1094–1103.

    Article  Google Scholar 

  • Breau, L. M., Finley, G. A., McGrath, P. J., & Camfield, C. S. (2002). Validation of the non-communicating children’s pain checklist–postoperative version. Anesthesiology: The Journal of the American Society of Anesthesiologists, 96(3), 528–535.

    Article  Google Scholar 

  • Breau, L. M., Lotan, M., & Koh, J. L. (2011). Pain in individuals with intellectual and developmental disabilities. In Neurodevelopmental Disabilities (pp. 255–276). Dordrecht: Springer.

    Chapter  Google Scholar 

  • Breau, L. M., MacLaren, J., McGrath, P. J., Camfield, C. S., & Finley, G. A. (2003). Caregivers’ beliefs regarding pain in children with cognitive impairment: Relation between pain sensation and reaction increases with severity of impairment. The Clinical Journal of Pain, 19(6), 335–344.

    Article  Google Scholar 

  • Breau, L. M., McGrath, P. J., Camfield, C. S., & Finley, G. A. (2002). Psychometric properties of the non-communicating children’s pain checklist-revised. Pain, 99(1–2), 349–357.

    Article  Google Scholar 

  • Breau, L. M., McGrath, P. J., & Zabalia, M. (2006). Assessing pediatric pain and developmental disabilities. In F. Symons & T. Oberlander (Eds.), Pain in children and adults with developmental disabilities (pp. 67–87). Baltimore: Paul H. Brookes.

    Google Scholar 

  • Burkitt, C., Breau, L. M., Salsman, S., Sarsfield Turner, T., & Mullan, R. (2009). Pilot study of the feasibility of the Non-Communicating Children’s Pain Checklist Revised for pain assessment for adults with intellectual disabilities. Journal of Pain Management, 2(1), 37–49.

    Google Scholar 

  • Carr, E. G., & Owen-DeSchryver, J. S. (2007). Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities. Journal of Autism and Developmental Disorders, 37(3), 413–424.

    Article  Google Scholar 

  • Carter, B., Arnott, J., Simons, J., & Bray, L. (2017). Developing a sense of knowing and acquiring the skills to manage pain in children with profound cognitive impairments: Mothers’ perspectives. Pain Research and Management, 2017.

    Google Scholar 

  • Carter, B., McArthur, E., & Cunliffe, M. (2002). Dealing with uncertainty: Parental assessment of pain in their children with profound special needs. Journal of Advanced Nursing, 38(5), 449–457.

    Article  Google Scholar 

  • Carter, B., Simons, J., Bray, L., & Arnott, J. (2016). Navigating uncertainty: Health professionals’ knowledge, skill, and confidence in assessing and managing pain in children with profound cognitive impairment. Pain Research and Management.https://doi.org/10.1155/2016/8617182

  • Cautela, J. R., & Groden, J. (1978). Relaxation: A Comprehensive Manual for Adults, Children, and Children with Special Needs. Champaign: Research Press Company.

    Google Scholar 

  • Chen-Lim, M. L., Zarnowsky, C., Green, R., Shaffer, S., Holtzer, B., & Ely, E. (2012). Optimizing the assessment of pain in children who are cognitively impaired through the quality improvement process. Journal of Pediatric Nursing, 27(6), 750–759.

    Article  Google Scholar 

  • Clarke, Z. J., Thompson, A. R., Buchan, L., & Combes, H. (2008). Parents’ experiences of pain and discomfort in people with learning disabilities. British Journal of Learning Disabilities, 36(2), 84–90.

    Article  Google Scholar 

  • Cohen, L. L., Cousins, L. A., & Martin, S. R. (2014). Procedural pain distraction. In P. J. McGrath, B. J. Stevens, S. M. Walker, & W. T. Zempsky (Eds.), Oxford Textbook of Paediatric Pain (pp. 553–559). Oxford: Oxford University Press.

    Google Scholar 

  • Collignon, P., & Giusiano, B. (2001). Validation of a pain evaluation scale for patients with severe cerebral palsy. European Journal of Pain, 5(4), 433–442.

    Article  Google Scholar 

  • Courtemanche, A., Schroeder, S., Sheldon, J., Sherman, J., & Fowler, A. (2012). Observing signs of pain in relation to self-injurious behaviour among individuals with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 56(5), 501–515.

    Article  Google Scholar 

  • Craig, K. D. (2009). The social communication model of pain. Canadian Psychology, 50, 22–32. https://doi.org/10.1037/a0014772

    Article  Google Scholar 

  • Craig, K. D., Versloot, J., Goubert, L., Vervoort, T., & Crombez, G. (2010). Perceiving pain in others: Automatic and controlled mechanisms. The Journal of Pain, 11(2), 101–108. https://doi.org/10.1016/j.jpain.2009.08.008

    Article  Google Scholar 

  • Crosta, Q. R., Ward, T. M., Walker, A. J., & Peters, L. M. (2014). A review of pain measures for hospitalized children with cognitive impairment. Journal for Specialists in Pediatric Nursing, 19(2), 109–118.

    Article  Google Scholar 

  • de Knegt, N. C., Lobbezoo, F., Schuengel, C., Evenhuis, H. M., & Scherder, E. J. (2016). Self-reporting tool on pain in people with intellectual disabilities (STOP-ID!): A usability study. Augmentative and Alternative Communication, 32(1), 1–11. https://doi.org/10.3109/07434618.2015.1100677

    Article  Google Scholar 

  • de Knegt, N. C., Pieper, M. J., Lobbezoo, F., Schuengel, C., Evenhuis, H. M., Passchier, J., & Scherder, E. J. (2013). Behavioral pain indicators in people with intellectual disabilities: A systematic review. The Journal of Pain, 14(9), 885–896. https://doi.org/10.1016/j.jpain.2013.04.016

    Article  Google Scholar 

  • Defrin, R., Pick, C. G., Peretz, C., & Carmeli, E. (2004). A quantitative somatosensory testing of pain threshold in individuals with mental retardation. Pain, 108(1–2), 58–66.

    Article  Google Scholar 

  • Doody, O., & Bailey, M. E. (2017). Pain and pain assessment in people with intellectual disability: Issues and challenges in practice. British Journal of Learning Disabilities, 45(3), 157–165.

    Article  Google Scholar 

  • Doth, A. H., Hansson, P. T., Jensen, M. P., & Taylor, R. S. (2010). The burden of neuropathic pain: A systematic review and meta-analysis of health utilities. Pain, 149(2), 338–344.

    Article  Google Scholar 

  • Down, J., Geranton, S. M., Bebbington, A., Jacoby, P., Bahi-Buisson, N., Ravine, D., et al. (2010). Linking MECP2 and pain sensitivity: the example of Rett syndrome. American Journal of Medical Genetics, 152A, 1197–1205.

    Article  Google Scholar 

  • Dubois, A., Capdevila, X., Bringuier, S., & Pry, R. (2010). Pain expression in children with an intellectual disability. European Journal of Pain, 14(6), 654–660.

    Article  Google Scholar 

  • Duivenvoorden, H. J., Tibboel, D., Koot, H. M., van Dijk, M., & Peters, J. W. B. (2006). Pain assessment in profound cognitive impaired children using the Checklist Pain Behavior; Is item reduction valid? Pain, 126(1–3), 147–154.

    Article  Google Scholar 

  • Eccleston, C., Palermo, T. M., Williams, A. C. D. C., Lewandowski Holley, A., Morley, S., Fisher, E., & Law, E. (2014). Psychological therapies for the management of chronic and recurrent pain in children and adolescents. The Cochrane Library, 5, 1–78. https://doi.org/10.1002/14651858.CD003968.pub4

    Article  Google Scholar 

  • Eland, J. M., & Anderson, J. E. (1977). The experience of pain in children (pp. 453–473). Pain: A source book for nurses and other health professionals.

    Google Scholar 

  • Ely, E., Chen-Lim, M. L., Carpenter, K. M., Wallhauser, E., & Friedlaender, E. (2016). Pain assessment of children with autism spectrum disorders. Journal of Developmental & Behavioral Pediatrics, 37(1), 53–61.

    Article  Google Scholar 

  • Fanurik, D., Koh, J. L., Schmitz, M. L., Harrison, R. D., Roberson, P. K., & Killebrew, P. (1999). Pain assessment and treatment in children with cognitive impairment: A survey of nurses’ and physicians’ beliefs. The Clinical Journal of Pain, 15(4), 304–312.

    Article  Google Scholar 

  • Findlay, L., Williams, A. C. D. C., Baum, S., & Scior, K. (2015). Caregiver experiences of supporting adults with intellectual disabilities in pain. Journal of Applied Research in Intellectual Disabilities, 28(2), 111–120.

    Article  Google Scholar 

  • Genik, L. M., McMurtry, C. M., & Breau, L. M. (2017). Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions. Research in Developmental Disabilities, 62, 197–208.

    Article  Google Scholar 

  • Genik, L. M., McMurtry, C. M., Breau, L. M., Lewis, S. P., & Freedman-Kalchman, T. (2017). Pain in children with developmental disabilities: Development and preliminary effectiveness of a pain training workshop for respite workers. The Clinical Journal of Pain.https://doi.org/10.1097/AJP.0000000000000554

  • Hadjistavropoulos, T., Craig, K. D., Duck, S., Cano, A., Goubert, L., Jackson, P. L., … Fitzgerald, T. D. (2011). A biopsychosocial formulation of pain communication. Psychological Bulletin, 137, 910–939. https://doi.org/10.1037/a0023876

    Article  Google Scholar 

  • Hagberg, B. (2002). Clinical manifestations and stages of Rett syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 8, 61–65.

    Article  Google Scholar 

  • Haraldstad, K., Sørum, R., Eide, H., Natvig, G. K., & Helseth, S. (2011). Pain in children and adolescents: Prevalence, impact on daily life, and parents’ perception, a school survey. Scandinavian Journal of Caring Sciences, 25(1), 27–36.

    Article  Google Scholar 

  • Heifetz, M., & Lunsky, Y. (2018). Implementation and evaluation of health passport communication tools in emergency departments. Research in Developmental Disabilities, 72, 23–32.

    Article  Google Scholar 

  • Hennequin, M., Morin, C., & Feine, J. S. (2000). Pain expression and stimulus localisation in individuals with Down’s syndrome. The Lancet, 356(9245), 1882–1887.

    Article  Google Scholar 

  • Hester, N., Foster, R., & Kristensen, K. (1990). Measurement of pain in children: Generalizability and validity of the pain ladder and poker chip tool. Advanced Pain Research and Therapy, 15, 79–84.

    Google Scholar 

  • Hicks, C. L., von Baeyer, C. L., Spafford, P. A., van Korlaar, I., & Goodenough, B. (2001). Faces Pain Scale-Revised: Toward a common metric in pediatric pain measurement. Pain, 93, 173–183. https://doi.org/10.1016/S0304-3959(01)00314-1

    Article  Google Scholar 

  • Hodgkinson, I., Jindrich, M. L., Duhaut, P., Vadot, J. P., Metton, G., & Berard, C. (2001). Hip pain in 234 non-ambulatory adolescents and young adults with cerebral palsy: A cross-sectional multicentre study. Developmental Medicine and Child Neurology, 43(12), 806–808.

    Article  Google Scholar 

  • Houlihan, C. M., O’Donnell, M., Conaway, M., & Stevenson, R. D. (2004). Bodily pain and health-related quality of life in children with cerebral palsy. Developmental Medicine and Child Neurology, 46(5), 305–310.

    Article  Google Scholar 

  • Hunt, A., Goldman, A., Seers, K., Crichton, N., Mastroyannopoulou, K., Moffat, V., … Brady, M. (2004). Clinical validation of the paediatric pain profile. Developmental Medicine and Child Neurology, 46(1), 9–18.

    Article  Google Scholar 

  • Hunt, A., Mastroyannopoulou, K., Goldman, A., & Seers, K. (2003). Not knowing—the problem of pain in children with severe neurological impairment. International Journal of Nursing Studies, 40(2), 171–183.

    Article  Google Scholar 

  • Hunt, K. A., & Franck, L. S. (2011). Special needs require special attention: A pilot project implementing the paediatric pain profile for children with profound neurological impairment in an in-patient setting following surgery. Journal of Child Health Care, 15(3), 210–220.

    Article  Google Scholar 

  • International Association for the Study of Pain (IASP). (2012). IASP Taxonomy. http://www.iasp-pain.org/Content/NavigationMenu/GeneralResourceLinks/PainDefinitions/default.htm

  • Johansson, M., Carlberg, E. B., & Jylli, L. (2010). Validity and reliability of a Swedish version of the non-communicating children’s pain checklist–postoperative version. Acta Paediatrica, 99(6), 929–933.

    Article  Google Scholar 

  • Johannes, C. B., Le, T. K., Zhou, X., Johnston, J. A., & Dworkin, R. H. (2010). The prevalence of chronic pain in United States adults: Results of an Internet-based survey. The Journal of Pain, 11(11), 1230–1239.

    Article  Google Scholar 

  • Kennedy, S., O’Higgins, S., Sarma, K., Willig, C., & McGuire, B. E. (2014). Evaluation of a group based cognitive behavioural therapy programme for menstrual pain management in young women with intellectual disabilities: Protocol for a mixed methods controlled clinical trial. BMC Women’s Health, 14(1), 107.

    Article  Google Scholar 

  • King, S., Chambers, C. T., Huguet, A., MacNevin, R. C., McGrath, P. J., Parker, L., & MacDonald, A. J. (2011). The epidemiology of chronic pain in children and adolescents revisited: A systematic review. Pain, 152(12), 2729–2738.

    Article  Google Scholar 

  • Kleinknecht, M. (2007). Reliability and validity of the German language version of the “NCCPC-R”. Pflege, 20(2), 93–102.

    Article  Google Scholar 

  • Koh, J. L., Fanurik, D., Harrison, R. D., Schmitz, M. L., & Norvell, D. (2004). Analgesia following surgery in children with and without cognitive impairment. Pain, 111(3), 239–244.

    Article  Google Scholar 

  • Koller, D., & Goldman, R. D. (2012). Distraction techniques for children undergoing procedures: A critical review of pediatric research. Journal of Pediatric Nursing: Nursing Care of Children and Families, 27(6), 652–681.

    Article  Google Scholar 

  • Leadley, R. M., Armstrong, N., Lee, Y. C., Allen, A., & Kleijnen, J. (2012). Chronic diseases in the European Union: the prevalence and health cost implications of chronic pain. Journal of Pain & Palliative Care Pharmacotherapy, 26(4), 310–325.

    Article  Google Scholar 

  • Logan, D. E., Coakley, R. M., & Barber Garcia, B. N. (2014). Cognitive behavioural interventions. In P. J. McGrath, B. J. Stevens, S. M. Walker, & W. T. Zempsky (Eds.), Oxford Textbook of Paediatric Pain (pp. 519–530). Oxford: Oxford University Press.

    Google Scholar 

  • Lotan, M., Ljunggren, E. A., Johnsen, T. B., Defrin, R., Pick, C. G., & Strand, L. I. (2009). A modified version of the Non-Communicating Children Pain Checklist-Revised, adapted to adults with intellectual and developmental disabilities: Sensitivity to pain and internal consistency. The Journal of Pain, 10(4), 398–407. https://doi.org/10.1016/j.jpain.2008.09.006

    Article  Google Scholar 

  • Lotan, M., Moe-Nilssen, R., Ljunggren, A. E., & Strand, L. I. (2009). Reliability of the non-communicating adult pain checklist (NCAPC), assessed by different groups of health workers. Research in Developmental Disabilities, 30(4), 735–745.

    Article  Google Scholar 

  • Lynch, M. E. (2011). The need for a Canadian pain strategy. Pain Research and Management, 16(2), 77–80.

    Article  Google Scholar 

  • Mackey, E., & Dodd, K. (2010). Evaluation and effectiveness of pain recognition and management training for staff working in learning disability services. British Journal of Learning Disabilities, 39(3), 243–251.

    Article  Google Scholar 

  • Malviya, S., Voepel-Lewis, T., Burke, C., Merkel, S., & Tait, A. R. (2006). The revised FLACC observational pain tool: Improved reliability and validity for pain assessment in children with cognitive impairment. Pediatric Anesthesia, 16(3), 258–265.

    Article  Google Scholar 

  • Malviya, S., Voepel-Lewis, T., Merkel, S., & Tait, A. R. (2005). Difficult pain assessment and lack of clinician knowledge are ongoing barriers to effective pain management in children with cognitive impairment. Acute Pain, 7(1), 27–32.

    Article  Google Scholar 

  • Malviya, S., Voepel-Lewis, T., Tait, A. R., Merkel, S., Lauer, A., Munro, H., & Farley, F. (2001). Pain management in children with and without cognitive impairment following spine fusion surgery. Pediatric Anesthesia, 11(4), 453–458.

    Article  Google Scholar 

  • McGrath, P. A. (1990). Pain in children: Nature, assessment, and treatment. New York: Guilford.

    Google Scholar 

  • McGuire, B. E., Daly, P., & Smyth, F. (2010). Chronic pain in people with an intellectual disability: Under-recognised and under-treated? Journal of Intellectual Disability Research, 54(3), 240–245. https://doi.org/10.1111/j.1365-2788.2010.01254.x

    Article  Google Scholar 

  • McManus, S., Treacy, M., & McGuire, B. E. (2014). Cognitive behavioural therapy for chronic pain in people with an intellectual disability: A case series using components of the Feeling Better programme. Journal of Intellectual Disability Research, 58(3), 296–306.

    Article  Google Scholar 

  • Meir, L., Strand, L. I., & Alice, K. (2012). A model for pain behavior in individuals with intellectual and developmental disabilities. Research in Developmental Disabilities, 33(6), 1984–1989.

    Article  Google Scholar 

  • Merskey, H., & Bogduk, N. (1994). Classification of chronic pain: Descriptions of chronic pain syndromes and definitions of pain terms. Seattle, WA: IASP Press.

    Google Scholar 

  • Nader, R., Oberlander, T. F., Chambers, C. T., & Craig, K. D. (2004). Expression of pain in children with autism. The Clinical Journal of Pain, 20(2), 88–97.

    Article  Google Scholar 

  • Nagasako, E. M., Oaklander, A. L., & Dworkin, R. H. (2003). Congenital insensitivity to pain: An update. Pain, 101(3), 213–219. https://doi.org/10.1016/S0304-3959(02)00482-7

    Article  Google Scholar 

  • Nahin, R. L. (2015). Estimates of pain prevalence and severity in adults: United States, 2012. The Journal of Pain, 16(8), 769–780.

    Article  Google Scholar 

  • Neul, J. L., Kaufmann, W. E., Glaze, D. G., Christodoulou, J., Clarke, A. J., Bahi-Buisson, N., … Percy, A. K. (2010). Rett syndrome: Revised diagnostic criteria and nomenclature. Annals of Neurology, 68(6), 944–950.

    Article  Google Scholar 

  • Nilsson, S., Johnson, E., & Adolfsson, M. (2016). Professionals’ perceptions about the need for pain management interventions for children with cerebral palsy in South African school settings. Pain Management Nursing, 17(4), 249–261.

    Article  Google Scholar 

  • Oberlander, T. F., O’Donnell, M. E., & Montgomery, C. J. (1999). Pain in children with significant neurological impairment. Journal of Developmental and Behavioral Pediatrics: JDBP, 20(4), 235–243.

    Article  Google Scholar 

  • Palermo, T. M. (2000). Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. Journal of Developmental and Behavioral Pediatrics, 21(1), 58–69.

    Article  Google Scholar 

  • Palermo, T. M., Eccleston, C., Lewandowski, A. S., Williams, A. C. D. C., & Morley, S. (2010). Randomized controlled trials of psychological therapies for management of chronic pain in children and adolescents: An updated meta-analytic review. Pain, 148(3), 387–397.

    Article  Google Scholar 

  • Pedersen, L. K., Rahbek, O., Nikolajsen, L., & Møller-Madsen, B. (2015). The revised FLACC score: Reliability and validation for pain assessment in children with cerebral palsy. Scandinavian Journal of Pain, 9, 57–61.

    Article  Google Scholar 

  • Perquin, C. W., Hazebroek-Kampschreur, A. A., Hunfeld, J. A., Bohnen, A. M., van Suijlekom-Smit, L. W., Passchier, J., & van der Wouden, J. C. (2000). Pain in children and adolescents: A common experience. Pain, 87(1), 51–58.

    Article  Google Scholar 

  • Phan, A., Edwards, C. L., & Robinson, E. L. (2005). The assessment of pain and discomfort in individuals with mental retardation. Research in Developmental Disabilities, 26, 433–439.

    Article  Google Scholar 

  • Quinn, B. L. (2016). ‘It’s Not Easy’: School nurse pain assessment practices for students with special needs. Pain Management Nursing, 17(2), 119–131.

    Article  Google Scholar 

  • Quinn, B. L., Seibold, E., & Hayman, L. (2015). Pain assessment in children with special needs: A review of the literature. Exceptional Children, 82(1), 44–57.

    Article  Google Scholar 

  • Quinn, B. L., & Serna, R. W. (2017). Educators’ experiences identifying pain among students in special education settings. The Journal of School Nursing. https://doi.org/10.1177/1059840517747974

  • Quinn, B. L., & Smolinski, M. (2017). Improving school nurse pain assessment practices for students with intellectual disability. The Journal of School Nursing. https://doi.org/10.1177/1059840517722591

  • Rakel, B., & Barr, J. O. (2003). Physical modalities in chronic pain management. Nursing Clinics of North America, 38, 477–494.

    Article  Google Scholar 

  • Regnard, C., Reynolds, J., Watson, B., Matthews, D., Gibson, L., & Clarke, C. (2007). Understanding distress in people with severe communication difficulties: Developing and assessing the Disability Distress Assessment Tool (DisDAT). Journal of Intellectual Disability Research, 51(4), 277–292.

    Article  Google Scholar 

  • Riddell, R. P., Taddio, A., McMurtry, C. M., Shah, V., Noel, M., & Chambers, C. T. (2015). Process interventions for vaccine injections: Systematic review of randomized controlled trials and quasi-randomized controlled trials. The Clinical Journal of Pain, 31(Suppl 10), S99.

    Article  Google Scholar 

  • Schiavenato, M., & Craig, K. D. (2010). Pain assessment as a social transaction: Beyond the “gold standard”. The Clinical Journal of Pain, 26(8), 667–676.

    Article  Google Scholar 

  • Schopflocher, D., Taenzer, P., & Jovey, R. (2011). The prevalence of chronic pain in Canada. Pain Research and Management, 16(6), 445–450.

    Article  Google Scholar 

  • Scott, J., & Huskisson, E. C. (1976). Graphic representation of pain. Pain, 2(2), 175–184.

    Article  Google Scholar 

  • Sessle, B. J. (2012). The pain crisis: what it is and what can be done. Pain Research and Treatment, 2012, 1–6. https://doi.org/10.1155/2012/703947

    Article  Google Scholar 

  • Shinde, S. K., & Symons, F. (2007). Educator perceptions and ratings of pain in school-age children with mental retardation and developmental disabilities. Education and Training in Developmental Disabilities, 224–229.

    Google Scholar 

  • Sinatra, R. (2010). Causes and consequences of inadequate management of acute pain. Pain Medicine, 11(12), 1859–1871.

    Article  Google Scholar 

  • Slifer, K. J., Hankinson, J. C., Zettler, M. A., Frutchey, R. A., Hendricks, M. C., Ward, C. M., & Reesman, J. (2011). Distraction, exposure therapy, counterconditioning, and topical anesthetic for acute pain management during needle sticks in children with intellectual and developmental disabilities. Clinical Pediatrics, 50(8), 688–697.

    Article  Google Scholar 

  • Sobsey, D. (2006). Pain and disability in an ethical and social context. In F. Srymons & T. Oberlander (Eds.), Pain in Children and Adults with Developmental Disabilities (pp. 19–39). Baltimore: Paul H. Brookes.

    Google Scholar 

  • Solodiuk, J. C., Scott-Sutherland, J., Meyers, M., Myette, B., Shusterman, C., Karian, V. E., … Curley, M. A. (2010). Validation of the Individualized Numeric Rating Scale (INRS): A pain assessment tool for nonverbal children with intellectual disability. Pain, 150(2), 231–236.

    Article  Google Scholar 

  • Solodiuk, J., & Curley, M. A. (2003). Pain assessment in nonverbal children with severe cognitive impairments: The individualized numeric rating scale (INRS). Journal of Pediatric Nursing, 18(4), 295–299.

    Article  Google Scholar 

  • Stallard, P., Williams, L., Lenton, S., & Velleman, R. (2001). Pain in cognitively impaired, non- communicating children. Archives of Disease in Childhood, 85(6), 460–462.

    Article  Google Scholar 

  • Stallard, P., Williams, L., Velleman, R., Lenton, S., McGrath, P. J., & Taylor, G. (2002). The development and evaluation of the pain indicator for communicatively impaired children (PICIC). Pain, 98(1–2), 145–149.

    Article  Google Scholar 

  • Steingrímsdóttir, Ó. A., Landmark, T., Macfarlane, G. J., & Nielsen, C. S. (2017). Defining chronic pain in epidemiological studies: A systematic review and meta-analysis. Pain, 158(11), 2092–2107.

    Article  Google Scholar 

  • Stevens, B. J., Abbott, L. K., Yamada, J., Harrison, D., Stinson, J., Taddio, A., … Campbell, F. (2011). Epidemiology and management of painful procedures in children in Canadian hospitals. Canadian Medical Association Journal, 183(7), E403–E410.

    Article  Google Scholar 

  • Stevens, B. J., & Zempsky, W. T. (2013). Prevalence and distribution of pain in children. In P. J. McGrath, B. J. Stevens, S. M. Walker, & W. T. Zempsky (Eds.), Oxford Textbook of Paediatric Pain (pp. 12–19). Oxford: Oxford University Press.

    Chapter  Google Scholar 

  • Symons, F. J., Byiers, B., Tervo, R., & Beisang, A. (2013). Parent reported pain in rett syndrome. The Clinical Journal of Pain, 29(8), 744–746.

    Article  Google Scholar 

  • Symons, F. J., Harper, V. N., McGrath, P. J., Breau, L. M., & Bodfish, J. W. (2009). Evidence of increased non-verbal behavioral signs of pain in adults with neurodevelopmental disorders and chronic self-injury. Research in Developmental Disabilities, 30(3), 521–528.

    Article  Google Scholar 

  • Symons, F. J., Shinde, S. K., & Gilles, E. (2008). Perspectives on pain and intellectual disability. Journal of Intellectual Disability Research, 52(4), 275–286.

    Article  Google Scholar 

  • Taddio, A., McMurtry, C. M., Shah, V., Riddell, R. P., Chambers, C. T., Noel, M., … Bleeker, E. V. (2015). Reducing pain during vaccine injections: Clinical practice guideline. Canadian Medical Association Journal, 187, 975–982. https://doi.org/10.1503/cmaj.150391

    Article  Google Scholar 

  • Taddio, A., & Oberlander, T. F. (2006). Pharmacological management of pain in children and youth with significant neurological impairments. In Pain in Children and Adults with Developmental Disabilities (pp. 193–211). Baltimore, MD: Paul H. Brookes Publishing Co.

    Google Scholar 

  • Temple, B., Dubé, C., McMillan, D., Secco, L., Kepron, E., Dittberner, K., & Vipond, G. (2012). Pain in people with developmental disabilities: A scoping review. Journal on Developmental Disabilities, 18, 73–86.

    Google Scholar 

  • Terstegen, C., Koot, H. M., de Boer, J. B., & Tibboel, D. (2003). Measuring pain in children with cognitive impairment: Pain response to surgical procedures. Pain, 103(1–2), 187–198.

    Article  Google Scholar 

  • Tudor, M. E., Walsh, C. E., Mulder, E. C., & Lerner, M. D. (2015). Pain as a predictor of sleep problems in youth with autism spectrum disorders. Autism, 19(3), 292–300.

    Article  Google Scholar 

  • Tupper, S. M., Swiggum, M. S., O’Rourke, D., & Sangster, M. L. (2013). Physical therapy interventions for pain in childhood and adolescence. In P. J. McGrath, B. J. Stevens, S. M. Walker, & W. T. Zempsky (Eds.), Oxford Textbook of Paediatric Pain (pp. 581–589). Oxford: Oxford University Press.

    Chapter  Google Scholar 

  • Turk, D. C. (2003). Cognitive-behavioral approach to the treatment of chronic pain patients. Regional Anesthesia and Pain Medicine, 28(6), 573–579.

    Article  Google Scholar 

  • Twycross, A., Voepel-Lewis, T., Vincent, C., Franck, L. S., & Von Baeyer, C. L. (2015). A debate on the proposition that self-report is the gold standard in assessment of pediatric pain intensity. The Clinical Journal of Pain, 31(8), 707–712.

    Article  Google Scholar 

  • Uman, L. S., Birnie, K. A., Noel, M., Parker, J. A., Chambers, C. T., McGrath, P. J., & Kisely, S. R. (2013). Psychological interventions for needle-related procedural pain and distress in children and adolescents.. The Cochrane Library.

    Book  Google Scholar 

  • Valkenburg, A. J., Tibboel, D., & Dijk, M. (2015). Pain sensitivity of children with Down syndrome and their siblings: Quantitative sensory testing versus parental reports. Developmental Medicine & Child Neurology, 57(11), 1049–1055. https://doi.org/10.1111/dmcn.12823

    Article  Google Scholar 

  • Valkenburg, A. J., van Dijk, M., de Klein, A., van den Anker, J. N., & Tibboel, D. (2010). Pain management in intellectually disabled children: Assessment, treatment, and translational research. Developmental Disabilities Research Reviews, 16(3), 248–257.

    Article  Google Scholar 

  • Valrie, C. R., Bromberg, M. H., Palermo, T., & Schanberg, L. E. (2013). A systematic review of sleep in pediatric pain populations. Journal of Developmental and Behavioral Pediatrics, 34(2), 120–128.

    Article  Google Scholar 

  • van der Putten, A., & Vlaskamp, C. (2011). Pain assessment in people with profound intellectual and multiple disabilities; A pilot study into the use of the Pain Behaviour Checklist in everyday practice. Research in Developmental Disabilities, 32(5), 1677–1684.

    Article  Google Scholar 

  • von Baeyer, C. L., Chambers, C. T., Forsyth, S. J., Eisen, S., & Parker, J. A. (2013). Developmental data supporting simplification of self-report pain scales for preschool-age children. The Journal of Pain, 14(10), 1116–1121.

    Article  Google Scholar 

  • Walsh, M., Morrison, T. G., & McGuire, B. E. (2011). Chronic pain in adults with an intellectual disability: prevalence, impact, and health service use based on caregiver report. Pain, 152(9), 1951–1957. https://doi.org/10.1016/j.pain.2011.02.031

    Article  Google Scholar 

  • Weissman-Fogel, I., Roth, A., Natan-Raav, K., & Lotan, M. (2015). Pain experience of adults with intellectual disabilities–caregiver reports. Journal of Intellectual Disability Research, 59(10), 914–924.

    Article  Google Scholar 

  • Williams, A. C. D. C., Eccleston, C., & Morley, S. (2012). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 11, 1–108. https://doi.org/10.1002/14651858.CD007407.pub3

    Article  Google Scholar 

  • Wong, D. L., & Baker, C. M. (1988). Pain in children: Comparison of assessment scales. Pediatric Nursing, 14(1), 9–17.

    Google Scholar 

  • Zabalia, M., Breau, L. M., Wood, C., Lévêque, C., Hennequin, M., Villeneuve, E., … Breau, G. (2011). Validation of the French version of the non-communicating children’s pain checklist-postoperative version. Canadian Journal of Anaesthesia= Journal canadien d’anesthesie, 58(11), 1016–1023.

    Google Scholar 

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Authors and Affiliations

  1. Department of Psychology, University of Guelph, Guelph, ON, Canada

    Lara M. Genik, Kaytlin Constantin & C. Meghan McMurtry

  2. Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA

    Frank J. Symons

  3. Pediatric Chronic Pain Program, McMaster Children’s Hospital, Hamilton, ON, Canada

    C. Meghan McMurtry

  4. Department of Paediatrics, Western University, London, ON, Canada

    C. Meghan McMurtry

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  1. Lara M. Genik
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  2. Kaytlin Constantin
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  3. Frank J. Symons
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  4. C. Meghan McMurtry
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Correspondence to Lara M. Genik .

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  1. Department of Psychology, Louisiana State University, Baton Rouge, LA, USA

    Johnny L. Matson

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Genik, L.M., Constantin, K., Symons, F.J., McMurtry, C.M. (2019). Pain. In: Matson, J.L. (eds) Handbook of Intellectual Disabilities. Autism and Child Psychopathology Series. Springer, Cham. https://doi.org/10.1007/978-3-030-20843-1_53

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