References
- Adair, B., Ullenhag, A., Rosenbaum, P., Granlund, M., Keen, D., & Imms, C. (2018). Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: A systematic review. Developmental Medicine & Child Neurology, 60(11), 1101–1116. https://doi.org/10.1111/dmcn.13959
- Amor, C. J., Spaeth, M. C., Chafey, D. H., & Gogola, G. R. (2011). Use of the Pediatric Outcomes Data Collection Instrument to evaluate functional outcomes in arthrogryposis. Journal of Pediatric Orthopedics, 31(3), 293–296. https://doi.org/10.1097/BPO.0b013e31820cad93
- Anaby, D. R., Campbell, W. N., Missiuna, C., Shaw, S. R., Bennett, S., Khan, S., Tremblay, S., Kalubi‐Lukusa, J.‐C., & Camden, C. (2019). Recommended practices to organize and deliver school-based services for children with disabilities: A scoping review. Child: Care, Health and Development, 45(1), 15–27. https://doi.org/10.1111/cch.12621
- Anaby, D., Mercerat, C., & Tremblay, S. (2017). Enhancing Youth Participation Using the PREP Intervention: Parents’ Perspectives. International Journal of Environmental Research and Public Health, 14(9), 1005. https://doi.org/10.3390/ijerph14091005
- Arksey, H., & O'Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
- Azbell, K., & Dannemiller, L. (2015). A case report of an infant with arthrogryposis. Pediatric Physical Therapy : The Official Publication of the Section on Pediatrics of the American Physical Therapy Association, 27(3), 293–301. https://doi.org/10.1097/PEP.0000000000000148
- Babik, I., Cunha, A., & Lobo, M. (2019). Play with objects in children with arthrogryposis: Effects of intervention with the Playskin LiftTM exoskeletal garment. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 181(3), 393–403. https://doi.org/10.1002/ajmg.c.31719
- Babik, Iryna, Kokkoni, E., Cunha, A. B., Cole Galloway, J., Rahman, T., Lobo, M. A. (2016). Feasibility and effectiveness of a novel exoskeleton for an infant with arm movement. Impairments… [Including commentary by Maureen Donohoe and Michael L. Fink]. J Pediatric Physical Therapy, 28(3), 338–346.
- Badia, M., Longo, E., Orgaz, M. B., & Gómez-Vela, M. (2013). The influence of participation in leisure activities on quality of life in Spanish children and adolescents with Cerebral Palsy. Research in Developmental Disabilities, 34(9), 2864–2871. https://doi.org/10.1016/j.ridd.2013.06.017
- Bagley, A., Gorton, G., Bjornson, K., Bevans, K., Stout, J., Narayanan, U., & Tucker, C. (2011). Factor- and item-level analyses of the 38-item activities scale for kids-performance. Developmental Medicine & Child Neurology, 53(2), 161–166. https://doi.org/10.1111/j.1469-8749.2010.03797.x
- Baksjøberget, P. E., Nyquist, A., Moser, T., & Jahnsen, R. (2017). Having fun and staying active! Children with disabilities and participation in physical activity: a follow-up study. Physical & Occupational Therapy in Pediatrics, 37(4), 347–358. https://doi.org/10.1080/01942638.2017.1281369
- Bender, L. H., & Withrow, C. A. (1989). Arthrogryposis multiplex congenita. Orthopedic Nursing, 8(5), 29–35. https://doi.org/10.1097/00006416-198909000-00009
- Beng Ting Lau, C. (2009). Perceived affordances and constraints: Listening to the voices of children with physical disabilities. University of Alberta.
- Bernstein, R. M. (2002). Arthrogryposis and amyoplasia. The Journal of the American Academy of Orthopaedic Surgeons, 10(6), 417–424. https://doi.org/10.5435/00124635-200211000-00006
- Brown, T., & Chien, C.-W. (2010). Top-down or bottom-up occupational therapy assessment: Which way do we go? British Journal of Occupational Therapy, 73(3), 95–95. https://doi.org/10.4276/030802210X12682330090334
- Cachecho, S., Elfassy, C., Hamdy, R., Rosenbaum, P., & Dahan‐Oliel, N. (2019). Arthrogryposis multiplex congenita definition: Update using an international consensus-based approach. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 181(3), 280–288. https://doi.org/10.1002/ajmg.c.31739
- Dahan-Oliel, N., Shikako-Thomas, K., & Majnemer, A. (2012). Quality of life and leisure participation in children with neurodevelopmental disabilities: A thematic analysis of the literature. Quality of Life Research, 21(3), 427–439. https://doi.org/10.1007/s11136-011-0063-9
- Dalton, C., & Hoyt-Hallett, G. (2013). Enablement through provision of assistive technology: Case reports of two children with physical disabilities. British Journal of Occupational Therapy, 76(2), 108–111. https://doi.org/10.4276/030802213X13603244419356
- Dillon, E., Bjornson, K., Jaffe, K., Hall, J., & Song, K. (2009). Ambulatory activity in youth with arthrogryposis: A cohort study. Journal of Pediatric Orthopaedics, 29(2), 214–217. https://doi.org/10.1097/BPO.0b013e3181990214
- Ejerskov, C., Lasgaard, M., & Østergaard, J. R. (2015). Teenagers and young adults with neurofibromatosis type 1 are more likely to experience loneliness than siblings without the illness. Acta Paediatrica, 104(6), 604–609. https://doi.org/10.1111/apa.12946
- Elfassy, C., Darsaklis, V. B., Snider, L., Gagnon, C., Hamdy, R., & Dahan-Oliel, N. (2019). Rehabilitation needs of youth with arthrogryposis multiplex congenita: Perspectives from key stakeholders. Disability and Rehabilitation, 1–7. https://doi.org/10.1080/09638288.2018.1559364
- Elfassy, C., Darsaklis, B., Snider, L., Gagnon, C., Hamdy, R., & Dahan-Oliel, N. (2019). Rehabilitation needs of youth with arthrogryposis multiplex congenita: Perspectives from key stakeholders. Disability and Rehabilitation, 1–7. https://doi.org/10.1080/09638288.2018.1559364
- Fahy, M. J., & Hall, J. G. (1990). A retrospective study of pregnancy complications among 828 cases of arthrogryposis. Genetic Counseling (Geneva, Switzerland), 1(1), 3–11.
- Farkas, C., Solodiuk, L., Taddio, A., Franck, L., Berberich, F. R., LoChiatto, J., & Solodiuk, J. C. (2015). Publicly available online educational videos regarding pediatric needle pain: A scoping review. The Clinical Journal of Pain, 31(6), 591–598. https://doi.org/10.1097/AJP.0000000000000197
- Fox, S. (2002). Vital decisions: How internet users decide what information to trust when they or their loved ones are sick. Pew Internet & American Life Project.
- Hall, J. G., Agranovich, O., Ponten, E., & van Bosse, H. J. (2015). Summary of the 2nd International Symposium on Arthrogryposis, St. Petersburg, Russia, September 17–19, 2014. American Journal of Medical Genetics Part A, 167(6), 1193–1195. https://doi.org/10.1002/ajmg.a.36938
- Hand, C., Law, M., & McColl, M. A. (2011). Occupational therapy interventions for chronic diseases: A scoping review. American Journal of Occupational Therapy, 65(4), 428–436. https://doi.org/10.5014/ajot.2011.002071
- Hardey, M. (1999). Doctor in the house: The Internet as a source of lay health knowledge and the challenge to expertise. Sociology of Health & Illness, 21(6), 820–835. https://doi.org/10.1111/1467-9566.00185
- Ho, C., & Karol, K. (2008). The utility of knee releases in arthrogryposis. Journal of Pediatric Orthopaedics, 28(3), 307–313. https://doi.org/10.1097/BPO.0b013e3181653bde
- Imms, C. (2008). Review of the Children’s Assessment of Participation and Enjoyment and the Preferences for Activity of Children. Physical & Occupational Therapy in Pediatrics, 28(4), 389–404. https://doi.org/10.1080/01942630802307135
- King, G., Law, M., King, S., Hurley, P., Rosenbaum, P., Hanna, S., Kertoy, M., & Young, N. (2004). CAPE/PAC children’s assessment of participation and enjoyment & preferences for activities of children. Harcourt Assessment, Inc.
- Kohl, I. I. I., & Cook, H. W. (Eds.). (2013). H. D. Educating the student body: Taking physical activity and physical education to school. National Academies Press.
- Kowalczyk, B., & Feluś, J. (2016). Arthrogryposis: an update on clinical aspects, etiology, and treatment strategies. Archives of Medical Science, 1(1), 10–24. https://doi.org/10.5114/aoms.2016.57578
- Larson, E. L. (1954). Experiences of physically handicapped children, ages three through six. The University of Iowa.
- Lauruschkus, K., Hallström, I., Westbom, L., Tornberg, Å., & Nordmark, E. (2017). Participation in physical activities for children with cerebral palsy: Feasibility and effectiveness of physical activity on prescription. Archives of Physiotherapy, 7(1), 1–12. https://doi.org/10.1186/s40945-017-0041-9
- Law, M. (1998). Critical review form – quantitative studies. McMaster University.
- Letts, L. (2007). Critical review form—qualitative studies (version 2.0). McMaster University.
- Levac, D., Colquhoun, H., & O'Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(1), 69. https://doi.org/10.1186/1748-5908-5-69
- Lobo, M., Koshy, J., Hall, M., Erol, O., Cao, H., Buckley, J., Galloway, J., & Higginson, J. (2016). Playskin Lift: Development and initial testing of an exoskeletal garment to assist upper extremity mobility and function. Physical Therapy, 96(3), 390–399. https://doi.org/10.2522/ptj.20140540
- Meriam Library. (2018). Evaluating information: The CRAAP test.
- Moher, D., Liberati, A., Tetzlaff, J., & Altman, D, & The Prisma Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), e1000097. https://doi.org/10.1371/journal.pmed.1000097
- Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., Mcarthur, A., & Aromataris, E. (2018). Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18(1). https://doi.org/10.1186/s12874-018-0611-x
- Novak, I., & Honan, I. (2019). Effectiveness of paediatric occupational therapy for children with disabilities: A systematic review. Australian Occupational Therapy Journal, 66(3), 258–273. https://doi.org/10.1111/1440-1630.12573
- Orr, K., & Arbour-Nicitopoulos, K. P. (2016). Youth sport participation and peer support in the context of physical disability: A qualitative perspective. University of Toronto.
- Ortiz-Castillo, E. M., & Hodge, S. R. (2011). Physical activity patterns and factors influencing physical activity participation among adolescents with physical disabilities in urban communities. The Ohio State University.
- Powell, J. A., Darvell, M., & Gray, J. A. M. (2003). The doctor, the patient and the world-wide web: How the internet is changing healthcare. JRSM, 96(2), 74–76. https://doi.org/10.1258/jrsm.96.2.74
- Pritchard-Wiart, L., Bragg, E., & Thompson-Hodgetts, S. (2019). The young movers project: A case series describing modified yoy car use as an early movement option for young children with mobility limitations. Physical & Occupational Therapy in Pediatrics, 39(6), 598–613. https://doi.org/10.1080/01942638.2019.1585403
- Riner, W. F., & Sellhorst, S. H. (2013). Physical activity and exercise in children with chronic health conditions. Journal of Sport and Health Science, 2(1), 12–20. https://doi.org/10.1016/j.jshs.2012.11.005
- Sells, J. M., Jaffe, K. M., & Hall, J. G. (1996). Amyoplasia, the most common type of arthrogryposis: The potential for good outcome. Pediatrics, 97(2), 225–231.
- Shum, K. T. I. (1982). The social interaction of disabled and nondisabled children in an integrated early childhood program. University of Southern California.
- Silva, J., & Klatsky, J. (1985). Body image and physical activity. Physical & Occupational Therapy in Pediatrics, 4(3), 85–92. https://doi.org/10.1080/J006v04n03_09
- Sodergard, J., Hakamies-Blomqvist, L., Sainio, K., Ryoppy, S., & Vuorinen, R. (1997). Arthrogryposis multiplex congenita: Perinatal and electromyographic findings, disability, and psychosocial outcome. Journal of Pediatric Orthopaedics B, 6(3), 167–171. https://doi.org/10.1097/01202412-199707000-00003
- Spencer, H. T., Bowen, R. E., Caputo, K., Green, T. A., & Lawrence, J. F. (2010). Bone mineral density and functional measures in patients with arthrogryposis. Journal of Pediatric Orthopaedics, 30(5), 514–518. https://doi.org/10.1097/BPO.0b013e3181df6185
- Staheli, L. (1998). Arthrogryposis: A text atlas (1st ed.). Cambridge University Press.
- Tan, S. S.-L., & Goonawardene, N. (2017). Internet health information seeking and the patient-physician relationship: A systematic review. Journal of Medical Internet Research, 19(1), e9–e9. https://doi.org/10.2196/jmir.5729
- Townsend, E. A., & Polatajko, H. J. (2007). Enabling occupation II: Advancing an occupational therapy vision of health, well-being, and justice through occupation. CAOT Publications ACE.
- Tyndall, J. (2010). AACODS checklist. Flinders University.
- Wingate, I. A., Bedini, L., & Ra, A. (2005). Children without disabilities’ attitudes toward and involvement in the recreation of their siblings with disabilities. The University of North Carolina at Greensboro.
- World Health Organization. (2001). International classification of functioning, disability and health: ICF. WHO.
- World Health Organization. (2007). International classification of functioning, disability and health-children and youth version: ICF. WHO.