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Research Papers

Community participation in youth with craniofacial microsomia

ORCID Icon, , ORCID Icon, ORCID Icon & ORCID Icon
Pages 253-260 | Received 22 Aug 2019, Accepted 01 May 2020, Published online: 01 Jun 2020

References

  • Gorlin RJ, Cohen MM, Hennekam RC. Syndromes of the head and neck. 4th ed. Oxford (UK): Oxford University Press; 2001.
  • Lauritzen C, Lilja J, Jarlstedt J. Airway obstruction and sleep apnea in children with craniofacial anomalies. Plast Reconstr Surg. 1986;77(1):1–6.
  • Poswillo D. The pathogenesis of the first and second branchial arch syndrome. Oral Surgery, Oral Med Oral Pathol Oral Radiol. 1973;35(3):302–328.
  • Cohen N, Cohen E, Gaiero A, et al. Maxillofacial features and systemic malformations in expanded spectrum hemifacial microsomia. Am J Med Genet. 2017;173(5):1208–1218.
  • Strömland K, Miller M, Sjögreen L, et al. Oculo-auriculo-vertebral spectrum: associated anomalies, functional deficits and possible developmental risk factors. Am J Med Genet. 2007;143A(12):1317–1325.
  • Caron C, Pluijmers BI, Joosten KFM, et al. Feeding difficulties in craniofacial microsomia: a systematic review. Int J Oral Maxillofac Surg. 2015;44(6):732–737.
  • Caron C, Pluijmers BI, Joosten KFM, et al. Obstructive sleep apnoea in craniofacial microsomia: a systematic review. Int J Oral Maxillofac Surg. 2015;44(5):592–598.
  • Luquetti DV, Brajcich MR, Stock NM, et al. Healthcare and psychosocial experiences of individuals with craniofacial microsomia: patient and caregivers perspectives. Int J Pediatr Otorhinolaryngol. 2018;107:164–175.
  • Collett BR, Speltz ML, Cloonan YK, et al. Neurodevelopmental outcomes in children with hemifacial microsomia. Arch Pediatr Adolesc Med. 2011;165(2):319–335.
  • Dufton LM, Speltz ML, Kelly JP, et al. Psychosocial outcomes in children with hemifacial microsomia. J Pediatr Psychol. 2011;36(7):794–805.
  • Khetani MA, Collett BR, Speltz ML, et al. Health-related quality of life in children with hemifacial microsomia. J Dev Behav Pediatr. 2013;34(9):661–668.
  • Speltz ML, Wallace ER, Collett BR, et al. Intelligence and academic achievement of adolescents with craniofacial microsomia. Plast Reconstr Surg. 2017;140(3):571–580.
  • Wallace ER, Collett BR, Heike CL, et al. Behavioral-social adjustment of adolescents with craniofacial microsomia. Cleft Palate-Craniofacial J. 2018;55(5):664–675.
  • Crerand CE, Sarwer DB, Kazak AE, et al. Body image and quality of life in adolescents with craniofacial conditions. Cleft Palate-Craniofacial J. 2017;54(1):2–12.
  • Topolski TD, Edwards TC, Patrick DL. Quality of life : How do adolescents with facial differences compare with other adolescents ? Cleft Palate-Craniofacial J. 2005;42(1):25–33.
  • Hamilton KV, Ormond KE, Moscarello T, et al. Exploring the medical and psychosocial concerns of adolescents and young adults with craniofacial microsomia. Cleft Palate-Craniofacial J. 2018;55(10):1430–1439.
  • Johns AL, Luquetti DV, Brajcich MR, et al. In their own words: caregiver and patient perspectives on stressors, resources, and recommendations in craniofacial microsomia care. J Craniofac Surg. 2018;29(8):1–8.
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development and the NIH Medical Rehabilitation Coordinating Committee. National Institutes of Health (NIH) research plan on rehabilitation: moving the field forward. Bethesda (MD): U.S. Department of Health and Human Services National Institutes of Health; 2016. Available from: https://www.nichd.nih.gov/sites/default/files/publications/pubs/Documents/NIH_ResearchPlan_Rehabilitation.pdf
  • Mcintyre S, Novak I, Cusick A. Consensus research priorities for cerebral palsy: a Delphi survey of consumers, researchers, and clinicians. Dev Med Child Neurol. 2010;52(3):270–275.
  • Gorter JW, Stewart D, Woodbury-Smith M. Youth in transition: care, health and development. Child Care Health Dev. 2011;37(6):757–763.
  • Bedell G, Coster W, Law M, et al. Community participation, supports, and barriers of school-age children with and without disabilities. Arch Phys Med Rehabil. 2013;94(2):315–323.
  • Anaby D, Law M, Coster W, et al. The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Arch Phys Med Rehabil. 2014;95(5):908–917.
  • 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. 2017;59(1):16–25.
  • Albrecht EC, Khetani MA. Environmental impact on young children’s participation in home-based activities. Dev Med Child Neurol. 2017;59(4):388–394.
  • Khetani MA, Albrecht EC, Jarvis JM, et al. Determinants of change in home participation among critically ill children. Dev Med Child Neurol. 2018;60(8):793–800.
  • American Occupational Therapy Association. Occupational therapy practice framework: domain & process. 3rd ed. Bethesda (MD): AOTA Press; 2014.
  • Werler MM, Sheehan JE, Hayes C, et al. Demographic and reproductive factors associated with hemifacial microsomia. Cleft Palate-Craniofacial J. 2004;41(5):494–500.
  • Werler MM, Sheehan JE, Hayes C, et al. Vasoactive exposures, vascular events, and hemifacial microsomia. Birth Defects Res A Clin Mol Teratol. 2004;70:389–395.
  • Coster W, Law M, Bedell G. Participation and environment measure – children and youth version. Boston (MA): Boston University; 2010. Available from: https://canchild.ca/en/shop/2-pem-cy-participation-and-environment-measure-children-and-youth.
  • Coster W, Bedell G, Law M, et al. Psychometric evaluation of the participation and environment measure for children and youth. Dev Med Child Neurol. 2011;53(11):1030–1037.
  • Khetani MA, McManus BM, Arestad K, et al. Technology-based functional assessment in early childhood intervention: a pilot study. Pilot Feasibility Stud. 2018;4(1):65.
  • Jarus T, Anaby D, Bart O, et al. Childhood participation in after-school activities: what is to be expected? Br J Occup Ther. 2010;73(8):344–350.
  • Law M, King G, King S, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol. 2006;48(05):337.
  • Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. New York (NY): Lawrence Erlbaum Associates; 1988.
  • Rosenthal R. Meta-analytic procedures for social research. Newbury Park (CA): SAGE Publications, Inc; 1991.
  • Fontenot K, Semega J, Kollar M. Income and poverty in the United States: 2017. Current Population Reports. United States Census Bureau; 2018. (P60–263). Available from: https://www.census.gov/content/dam/Census/library/publications/2018/demo/p60-263.pdf
  • Kaelin VC, Wallace ER, Werler MM, et al. Caregiver perspectives of school participation among students with craniofacial microsomia. Am J Occup Ther. Forthcoming.
  • Law M, Anaby D, Teplicky R, et al. Participation in the home environment among children and youth with and without disabilities. Br J Occup Ther. 2013;76(2):58–66.
  • Coster W, Law M, Bedell G, et al. School participation, supports and barriers of students with and without disabilities. Child Care Health Dev. 2013;39(4):535–543.
  • Angell AM, Carroll TC, Bagatell N, et al. Understanding self-determination as a crucial component in promoting the distinct value of occupational therapy in post-secondary transition planning. J Occup Ther Sch Early Interv. 2019;12(1):129–143.
  • Anaby D, Mercerat C, Tremblay S. Enhancing youth participation using the PREP intervention: parents’ perspectives. Int J Environ Res Public Health. 2017;14(9):1–10.
  • Kramer JM, Roemer K, Liljenquist K, et al. Formative evaluation of project TEAM (teens making environment and activity modifications). Intellect Dev Disabil. 2014;52(4):258–272.
  • Hemmingsson H, Borell L. Accommodation needs and student-environment fit in upper secondary schools for students with severe physical disabilities. Can J Occup Ther. 2000;67(3):162–172.
  • Adair B, Ullenhag A, Rosenbaum P, et al. Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review. Dev Med Child Neurol. 2018;60(11):1101–1116.

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