Co-development of the CMAP Book: a tool to enhance children’s participation in pediatric rehabilitation

References

• World Health Organization. International classification of functioning, disability and health. Geneva: WHO; 2001.
   Google Scholar
• World Health Organization. International classification of functioning, disability and health: children and youth version: ICF-CY. Geneva: WHO; 2007.
   Google Scholar
• Rosenbaum P, Gorter J. The ’F-words’ on childhood disability: I swear this is how we should think. ! Child Care Health Dev. 2012;38(4):457–463.
   PubMed Web of Science ®Google Scholar
• Vargus-Adams JN, Majnemer A. International classification of functioning, disability and health (ICF) as a framework for change: revolutionizing rehabilitation. J Child Neurol. 2014;29(8):1030–1035.
   PubMed Web of Science ®Google Scholar
• Vroland‐Nordstrand K, Eliasson A, Jacobsson H, et al. Can children identify and achieve goals for intervention? A randomized trial comparing two goal-setting approaches. Dev Med Child Neurol. 2016;58(6):589–596.
   PubMed Web of Science ®Google Scholar
• Goldstein D, Cohn E, Coster W. Enhancing participation for children with disabilities: application of the ICF enablement framework to pediatric physical therapist practice. Pediatr Phys Ther. 2004;16(2):114–120.
   PubMedGoogle Scholar
• Palisano R, Chiarello L, King G, et al. Participation-based therapy for children with physical disabilities. Disabil Rehabil. 2012;34(12):1041–1052.
   PubMed Web of Science ®Google Scholar
• Anaby D, Law M, Majnemer A, et al. Opening doors to participation of youth with physical disabilities: an intervention study. Can J Occup Ther. 2016;83(2):83–90.
   PubMed Web of Science ®Google Scholar
• Kangas J. Enhancing children’s participation in early childhood education through the participatory pedagogy [dissertation]. Helsinki: University of Helsinki; 2016.
   Google Scholar
• United Nations [Internet]. Convention on the rights of the child. General Assembly resolution 44/25 of 20 November 1989; [cited 2021 Apr 29]. Available from: https://www.ohchr.org/EN/ProfessionalInterest/Pages/CRC.aspx.
   Google Scholar
• Shier H. Pathways to participation: openings, opportunities and obligations. Child Soc. 2001;15(2):107–117.
   Google Scholar
• Hart R. Children’s participation. From tokenism to citizenship. UNICEF International Child Development Centre. Innocenti Essays. 1992;4:1–44.
   Google Scholar
• Järvikoski A. Monimuotoinen kuntoutus ja sen käsitteet. [Multifaceted rehabilitation and its concepts] Helsinki: Sosiaali- ja terveysministeriö, Sosiaali- ja terveysministeriön raportteja ja muistioita; 2013. 43. Finnish.
   Google Scholar
• Reedman S, Boyd R, Trost S, et al. Efficacy of participation-focused therapy on performance of physical activity participation goals and habitual physical activity in children with cerebral palsy: a randomized controlled trial. Arch Phys Med Rehabil. 2019;100(4):676–686.
   PubMed Web of Science ®Google Scholar
• Anaby D, Law M, Majnemer A, et al. The effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention: improving participation of adolescents with physical disabilities. Dev Med Child Neurol. 2018;60(5):513–519.
   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. 2017; 59(1):16–25.
   PubMed Web of Science ®Google Scholar
• The Social Insurance Institution [Internet]. Place: Publisher; 2020 [cited 2020 Dec 14]. Available from: http://www.kela.fi.
   Google Scholar
• Rissanen P. Kuntoutussuunnitelma [Rehabilitation plan]. In: Rissanen P, Kallaranta T, Suikkanen A, editors. Kuntoutus [Rehabilitation]. Helsinki: Kustannus Oy Duodecim; 2008. p. 625–646. Finnish.
   Google Scholar
• Øien I, Fallang B, Østensjø S. Goal-setting in paediatric rehabilitation: perceptions of parents and professionals. Child Care Health Dev. 2010;36(4):558–565.
   PubMed Web of Science ®Google Scholar
• Jeglinsky I, Brogren Carlberg E, Autti-Rämö I. How are actual needs recognized in the content and goals of written rehabilitation plans? Disabil Rehabil. 2014; 36(6):441–451.
   PubMed Web of Science ®Google Scholar
• Jeglinsky I, Kaakkuriniemi E, Veijola A, et al. Profiles of functioning of children with cerebral palsy in Finland: analysis of multi-professional family meetings. Disabil Rehabil. 2019;2019:1–7.
   Google Scholar
• Jeglinsky I, Salminen A-L, Brogren Carlberg E, et al. Rehabilitation planning for children and adolescents with cerebral palsy. J Pediatr Rehabil Med. 2012;(5):203–215.
   PubMedGoogle Scholar
• Jyrkämä J. Toimijuus, ikääntyminen ja arkielämä. Hahmottelua teoreettismetodologiseksi viitekehykseksi. [Agency, ageing and daily living. Outlining framework for theoretical methodology]. Gerontologia. 2008;(4):190–203. Finnish.
   Google Scholar
• Järvikoski A, Martin M, Autti-Rämö I, et al. Shared agency and collaboration between the family and professionals in medical rehabilitation of children with severe disabilities. Int J Rehabil Res. 2013;36(1):30–37.
   PubMed Web of Science ®Google Scholar
• Rezze BD, Law M, Eva K, et al. Therapy behaviours in paediatric rehabilitation: essential attributes for intervention with children with physical disabilities. Disabil Rehabil. 2014;36(1):16–22.
   PubMed Web of Science ®Google Scholar
• Kemmis S, Wilkinson M. Participatory action research and the study of practice. In Bill Atweh, Stephen Kemmis, Patricia Weeks, editors. Action research in practice: partnerships for social justice in education. London: Routledge; 1998. pp. 21–36.
   Google Scholar
• Vänskä N, Pollari K, Sipari S. Lasten osallistumista ja toimijuutta vahvistavat kuntoutuksenhyvät käytännöt kirjallisuudessa. Kuvaileva kirjallisuuskatsaus. [Good rehabilitation practices to enhance children’s participation and agency in the literature. Descriptive literature review.] Kelan työpapereita 94/2016. Finnish.
   Google Scholar
• Sipari S, Vänskä N, Pollari K. Lapsen edun toteutuminen kuntoutuksessa. Osallistumista ja toimijuutta vahvistavat hyvät käytännöt. [Realization of the best interests of the child in rehabilitation. Good practices to strengthen participation and agency]. Helsinki: Kela, Sosiaali- ja terveysturvan raportteja 5/2017. Finnish.
   Google Scholar
• Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–115.
   PubMed Web of Science ®Google Scholar
• Sipari S, Vänskä N, Pollari K. Lapselle merkityksellinen toiminta kuntoutumisessa – Lapsen Metkut. [Children’s Meaningful Activities and Participation in rehabilitation – Child’s MAP.] Metropolia University of Applied Sciences, Right of the child to participate in his/her rehabilitation – Assessing the child’s best interests (LOOK) – project, 2017. Available: metropolia.e-julkaisu.com/lapsen-metkut. Finnish.
   Google Scholar
• Vänskä N, Sipari S, Pollari K, et al. Lapsen oikeus osallistua kuntoutukseensa. LOOK-hankkeen arviointiraportti. [The child’s right to participate in his or her rehabilitation. LOOK project evaluation report.]. Helsinki: Kuntoutuksen kehittäminen, Kela; 2018. Finnish.
   Google Scholar
• Costa U, Brauchle G, Kennedy-Behr A. Collaborative goal setting with and for children as part of therapeutic intervention. Disabil Rehabil. 2017;39(16):1589–1600.
   PubMed Web of Science ®Google Scholar
• Vänskä N, Sipari S, Haataja L. What makes participation meaningful? Using photo-elicitation to interview children with disabilities. Phys Occup Ther Pediatr. 2020;40(6):595–609.
   PubMed Web of Science ®Google Scholar
• UN General Assembly, Convention on the Rights of Persons With Disabilities: Resolution/Adopted by the GeneralAssembly, January 24, 2007. A/RES/61/106; [cited 2021 Apr 29]. Available from: http://www.refworld.org/docid/45f973632.html
   Google Scholar
• Shikako-Thomas K, Kolehmainen N, Ketelaar M, et al. Promoting leisure participation as part of health and well-being in children and youth with cerebral palsy. J Child Neurol. 2014;29(8):1125–1133.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Ketelaar M, Smits DW, Meeteren K, et al. Involvement of young people and families in all stages of research; what, why and how? In: Imms C, Green D, editors. Participation, optimizing outcomes in childhood-onset neurodisability. London: Mac Keith Press; 2020. p. 105–118.
   Google Scholar
• Smits DW, Meeteren K, Klem M, et al. Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Res Involv Engagem. 2020;6:30.
   PubMedGoogle Scholar
• Bartlett D, Chiarello LA, Hjorngaard T, et al. Moving from parent "consultant" to parent "collaborator": one pediatric research team’s experience. Disabil Rehabil. 2016;39(21):2228–2235.
   PubMed Web of Science ®Google Scholar
• Bailey S, Boddy K, Briscoe S, et al. Involving disabled children and young people as partners in research: a systematic review. Child Care Health Dev. 2014;41(4):505–514.
   PubMed Web of Science ®Google Scholar
• Gonzales M, Phoenix M, Saxena S, et al. Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review. Disabil Rehabil. 2020;30:1–13.
   Google Scholar