Pain management for children with cerebral palsy in school settings in two cultures: action and reaction approaches

References

• Vargus-Adams JN, Martin LK. Domains of importance for parents, medical professionals and youth with cerebral palsy considering treatment outcomes. Child Care Health Dev. 2011;37:276–281.
   PubMed Web of Science ®Google Scholar
• Novak I, Hines M, Goldsmith S, et al. Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics. 2012;130:e1285–e1312.
   PubMed Web of Science ®Google Scholar
• Colver A, Rapp M, Eisemann N, et al. Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis. Lancet. 2015;385:705–716.
   PubMed Web of Science ®Google Scholar
• Dang VM, Colver A, Dickinson HO, et al. Predictors of participation of adolescents with cerebral palsy: a European multi-centre longitudinal study. Res Dev Disabil. 2014;36C:551–564.
   PubMedGoogle Scholar
• Novak I. Evidence-based diagnosis, health care, and rehabilitation for children with cerebral palsy. J Child Neurol. 2014;29:1141–1156.
   PubMed Web of Science ®Google Scholar
• Breau L. A new reminder that pain hurts. Dev Med Child Neurol. 2011;53:974–975.
   PubMed Web of Science ®Google Scholar
• Castle K, Imms C, Howie L. Being in pain: a phenomenological study of young people with cerebral palsy. Dev Med Child Neurol. 2007;49:445–449.
   PubMed Web of Science ®Google Scholar
• Berrin SJ, Malcarne VL, Varni JW, et al. Pain, fatigue, and school functioning in children with cerebral palsy: a path-analytic model. J Pediatr Psychol. 2007;32:330–337.
   PubMed Web of Science ®Google Scholar
• Breau L, Stevens B, Grunau RE. Developmental issues in acute and chronic pain in developmental disabilities. In: Oberlander TF, Symons FJ, editors. Pain in children and adults with developmental disabilities. Baltimore (MD): Paul Brookes Publishing Company; 2006. p. 89–107.
   Google Scholar
• Fowler EG, Kolobe THA, Damiano DL, et al. Promotion of physical fitness and prevention of secondary conditions for children with cerebral palsy: section on pediatrics research summit proceedings. Phys Ther. 2007;87:1495–1510.
   Google Scholar
• Westbom L, Hägglund G, Nordmark E. Cerebral palsy in a total population of 4–11 year olds in southern Sweden. Prevalence and distribution according to different CP classification systems. BMC Pediatr. 2007;7:41.
   PubMedGoogle Scholar
• Kingsnorth S, Orava T, Provvidenza C, et al. Chronic pain assessment tools for cerebral palsy: a systematic review. Pediatrics. 2015;136:e947–e960.
   PubMed Web of Science ®Google Scholar
• Swiggum M, Hamilton ML, Gleeson P, et al. Pain in children with cerebral palsy: implications for pediatric physical therapy. Pediatr Phys Ther. 2010;22:86–92.
   PubMed Web of Science ®Google Scholar
• Kent RM. Cerebral palsy. Handb Clin Neurol. 2013;110:443–459.
   PubMedGoogle Scholar
• Rivi E, Filippi M, Fornasari E, et al. Effectiveness of standing frame on constipation in children with cerebral palsy: a single-subject study. Occup Ther Int. 2014;21:115–123.
   PubMed Web of Science ®Google Scholar
• Imms C, Granlund M. Participation: are we there yet…. Aust Occup Ther J. 2014;61:291–292.
   PubMed Web of Science ®Google Scholar
• Imms C, Granlund M, Wilson PH, et al. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol. 2016;59:16–25.
   PubMed Web of Science ®Google Scholar
• Maxwell G, Alves I, Granlund M. Participation and environmental aspects in education and the ICF and the ICF-CY: findings from a systematic literature review. Dev Neurorehabil. 2012;15:63–78.
   PubMed Web of Science ®Google Scholar
• Simeonsson RJ, Bailey DB, Scandlin D. Disability in secondary conditions and quality of life: emerging issues in public health. In: Simeonsson RJ, McDevitt LN, editors. Issues in disability & health the role of secondary conditions & quality of life. Chapel Hill (NC): University of North Carolina; 1999. p. 239–255.
   Google Scholar
• Granlund M. Participation-challenges in conceptualization, measurement and intervention. Child Care Health Dev. 2013;39:470–473.
   PubMed Web of Science ®Google Scholar
• Maxwell G. Bringing more to participation. Participation in school activities of persons with disability within the framework of the ICF-CY. Jönköping: School of education and communication; 2012.
   Google Scholar
• Anaby D, Hand C, Bradley L, et al. The effect of the environment on participation of children and youth with disabilities: a scoping review. Disabil Rehabil. 2013;35:1589–1598.
   PubMed Web of Science ®Google Scholar
• Colver A, Dickinson HO. Study protocol: determinants of participation and quality of life of adolescents with cerebral palsy: a longitudinal study (SPARCLE2). BMC Public Health. 2010;10:280.
   PubMed Web of Science ®Google Scholar
• Hammal D, Jarvis S, Colver A. Participation of children with cerebral palsy is influenced by where they live. Dev Med Child Neurol. 2004;46:292–298.
   PubMed Web of Science ®Google Scholar
• GEOHIVE. Global Population Statistics. 2015 [cited 2015 June 21]. Available from: http://www.geohive.com.
   Google Scholar
• OECD. OECD Economic Surveys: South Africa 2013. 2013 [cited 2015 June 22]. Available from: http://dx.doi.org/10.1787/eco_surveys-zaf-2013-en.
   Google Scholar
• UN. UN Convention on the Rights of the Child. New York: United Nations; 1989.
   Google Scholar
• Saloojee G, Phohole M, Saloojee H, et al. Unmet health, welfare and educational needs of disabled children in an impoverished South African peri-urban township. Child Care Health Dev. 2007;33:230–235.
   PubMed Web of Science ®Google Scholar
• SFS. The Swedish Education Act (2010:800). Stockholm: Swedish National Agency for Education; 2010.
   Google Scholar
• Donohue D, Bornman J. The challenges of realising inclusive education in South Africa. SAJE. 2014;34:1–14.
   Google Scholar
• Skolverket. Elever i obligatoriska skolan läsåret 2012/13 [Pupils in compulsory education 2012/13]. Dnr 71-2013:299. Stockholm: Swedish National Agency for Education; 2013.
   Google Scholar
• Nortjé N, Albertyn R. The cultural language of pain: a South African study. S Afr. Fam Pract. 2015;57:24–27.
   Web of Science ®Google Scholar
• Finnström B, Söderhamn O. Conceptions of pain among Somali women. J Adv Nurs. 2006;54:418–425.
   PubMed Web of Science ®Google Scholar
• Johnson E, Nilsson S, Adolfsson M. Eina! Ouch! Eish! professionals’ perceptions of how children with cerebral palsy communicate about pain in South African school settings: implications for the use of AAC. Augment Altern Comm. 2015;31:325–335.
   PubMed Web of Science ®Google Scholar
• Nilsson S, Johnson E, Adolfsson M. Professionals perceptions about the need for pain management interventions for children with cerebral palsy in South African school settings. Pain Manag Nurs. 2016;17:249–261.
   PubMed Web of Science ®Google Scholar
• Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res. 2009;18:1263–1278.
   PubMed Web of Science ®Google Scholar
• Wibeck V, Abrandt Dahlgren M, Öberg G. Learning in focus groups: an analytical dimension for enhancing focus group research. Qual Res. 2007;7:249–267.
   Google Scholar
• Brotherson MJ. Interactive focus group interviewing: a qualitative research method in early intervention. TECSE. 1994;14:101–118.
   Google Scholar
• Obert C, Forsell M. Fokusgrupp – ett enkelt sätt att mäta kvalitet [Focus groups – an easy method to measure quality]. Helsingborg: Kommunlitteratur; 2000.
   Google Scholar
• White MA, Verhoef MJ. Toward a patient-centered approach: incorporating principles of participatory action research into clinical studies. Integr Cancer Ther. 2005;4:21–24.
   PubMedGoogle Scholar
• Hsieh H, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–1288.
   PubMed Web of Science ®Google Scholar
• Bornman J, Sevcik RA, Romski MA, et al. Successfully translating language and culture when adapting assessment measures. J Policy Pract Intellect Disabil. 2010;7:111–118.
   Web of Science ®Google Scholar
• Pena E. Lost in translation: methodological considerations in cross-cultural research. Child Dev. 2007;78:1255–1264.
   PubMed Web of Science ®Google Scholar
• Jóźźwiak M, Harasymczuk P, Koch A, et al. Incidence and risk factors of hip joint pain in children with severe cerebral palsy. Disabil Rehabil. 2011;33:1367–1372.
   PubMed Web of Science ®Google Scholar
• Hägglund G, Alriksson-Schmidt A, Lauge-Pedersen H, et al. Prevention of dislocation of the hip in children with cerebral palsy: 20-year results of a population-based prevention programme. Bone Joint J. 2014;96-B:1546–1552.
   PubMed Web of Science ®Google Scholar
• Twycross A, Collins S. Nurses’ views about the barriers and facilitators to effective management of pediatric pain. Pain Manag Nurs. 2013;14:e164–e172.
   PubMed Web of Science ®Google Scholar
• Johnson E, Bornman J, Tönsing KM. An exploration of pain-related vocabulary: implications for AAC use with children. Augment Altern Commun. 2016;32:249–260.
   PubMed Web of Science ®Google Scholar
• Vles G, Soudant D, Hoving M, et al. Long-term follow-up on continuous intrathecal Baclofen therapy in non-ambulant children with intractable spastic Cerebral Palsy. Eur J Paediatr Neurol. 2013;17:639–644.
   PubMed Web of Science ®Google Scholar
• Ramstad K, Jahnsen R, Skjeldal OH, et al. Characteristics of recurrent musculoskeletal pain in children with cerebral palsy aged 8 to 18 years. Dev Med Child Neurol. 2011;53:1013–1018.
   PubMed Web of Science ®Google Scholar
• RSA. Medicines and Related Substances Amendment Act, 2002. Republic of South Africa: South African Government; 2003.
   Google Scholar
• Patil S, Willett O, Thompkins T, et al. Botulinum toxin: pharmacology and therapeutic roles in pain states. Curr Pain Headache Rep. 2016;20:15.
   PubMed Web of Science ®Google Scholar
• Pavone V, Testa G, Restivo D, et al. Botulinum toxin treatment for limb spasticity in childhood cerebral palsy. Front Pharmacol. 2016;7:29.
   PubMed Web of Science ®Google Scholar
• Karaca B, Unlu E, Kose G, et al. Outcomes of botulinum toxin type A injection followed by rehabilitation in cases of cerebral palsy with upper extremity involvement. J Child Neurol. 2016;31:357–363.
   PubMed Web of Science ®Google Scholar
• Pin T, Elmasry J, Lewis J. Efficacy of botulinum toxin A in children with cerebral palsy in gross motor function classification system levels IV and V: a systematic review. Dev Med Child Neurol. 2013;55:304–313.
   PubMed Web of Science ®Google Scholar
• Lidman G, Nachemson A, Peny-Dahlstrand M, et al. Botulinum toxin A injections and occupational therapy in children with unilateral spastic cerebral palsy: a randomized controlled trial. Dev Med Child Neurol. 2015;57:754–761.
   PubMed Web of Science ®Google Scholar
• Schwabe A. Botulinum toxin in the treatment of pediatric upper limb spasticity. Semin Plast Surg. 2016;30:24–28.
   PubMed Web of Science ®Google Scholar
• Overgard T, Kjaersgaard-Hansen L, Soe M, et al Positive experience with intrathecal baclofen treatment in children with severe cerebral palsy. Dan Med J. 2015;62:A4999.
   PubMed Web of Science ®Google Scholar
• Gray N, Morton R, Brimlow K, et al. Goals and outcomes for non ambulant children receiving continuous infusion of intrathecal baclofen. Eur J Paediatr Neurol. 2012;16:443–448.
   PubMed Web of Science ®Google Scholar
• Papavasiliou AS. Management of motor problems in cerebral palsy: a critical update for the clinician. Eur J Paediatr Neurol. 2009;13:387–396.
   PubMed Web of Science ®Google Scholar
• Ullenhag A, Bult MK, Nyquist A, et al. An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands. Dev Neurorehabil. 2012;15:369–385.
   PubMed Web of Science ®Google Scholar
• Göransson K, Nilholm C. Conceptual diversities and empirical shortcomings – a critical analysis of research on inclusive education. Eur J Spec Needs Educ. 2014;29:265–280.
   Web of Science ®Google Scholar
• Noel M, Chambers CT, McGrath PJ, et al. The influence of children’s pain memories on subsequent pain experience. Pain. 2012;153:1563–1572.
   PubMed Web of Science ®Google Scholar
• Karande S, Patil S, Kulkarni M. Impact of an educational program on parental knowledge of cerebral palsy. Indian J Pediatr. 2008;75:901–906.
   PubMed Web of Science ®Google Scholar
• Arora SK, Aggarwal A, Mittal H. Impact of an educational film on parental knowledge of children with cerebral palsy. Int J Pediatr. 2014;2014:573698.
   PubMedGoogle Scholar
• Björck-Åkesson E, Granlund M. Early intervention in Sweden. A developmental systems perspective. In: Guralnick MJ, editor. The developmental systems approach to early intervention. Baltimore (MD): Paul H. Brookes; 2005. p. 571–592.
   Google Scholar
• Dunst CJ, Dempsey I. Family-professional partnerships and parenting competence, confidence, and enjoyment. Int J Disabil Dev Educ. 2007;54:305–318.
   Google Scholar
• McWilliam RA, Triveffe CM, Dunst CJ. Behavior engagement as a measue of efficacy of early intervention. Anal Interv Dev Disabil. 1985;5:33–45.
   Web of Science ®Google Scholar
• UNESCO. Open file on inclusive education: support materials for managers and administrator. Paris: UNESCO; 2003.
   Google Scholar
• Shikako-Thomas K, Shevell M, Lach L, et al. Are you doing what you want to do? Leisure preferences of adolescents with cerebral palsy. Dev Neurorehabil. 2015;18:234–240.
   PubMed Web of Science ®Google Scholar
• Böling S, Varho T, Kiviranta T, et al. Quality of life of Finnish children with cerebral palsy. Disabil Rehabil. 2016;38:683–688.
   PubMed Web of Science ®Google Scholar
• Adair B, Ullenhag A, Keen D, et al. The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review. Dev Med Child Neurol. 2015;57:1093–1104.
   PubMed Web of Science ®Google Scholar
• Graneheim Hällgren U, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105–112.
   PubMed Web of Science ®Google Scholar
• Kottner J, Audige L, Brorson S, et al. Guidelines for reporting reliability and agreement studies (GRRAS) were proposed. Int J Nurs Stud. 2011;48:661–671.
   PubMed Web of Science ®Google Scholar