A kaleidoscope of well-being to authentically represent the voices of children and young people with complex cerebral palsy: a case study series

References

• Kerr C, McDowell B, McDonough S, et al. The relationship between gross motor function and participation restriction in children with cerebral palsy: an exploratory analysis. Child Care Health Dev. 2007;33(1):22–27.
   PubMed Web of Science ®Google Scholar
• Park E, Kim W. Relationship between activity limitations and participation restriction in school-aged children with cerebral palsy. J Phys Ther Sci. 2015;27(8):2611–2614.
   PubMedGoogle Scholar
• Acts of of the National Assembly for Wales. Well-being of Future Generations (Wales) Act 2015 available under Open Government licence v.3.0; 2015. [Accessed 11.04.23].
   Google Scholar
• United Nations Children’s Fund. United Nations convention on the rights of the child. New York: UNICEF; 1989.
   Google Scholar
• Welsh Government. Rights of children and young persons (Wales) measure 2011. HMSO; 2011; p. 17. Open Government Licence on the National Archive [Accessed 11.04.23].
   Google Scholar
• Mertens DM, Sullivan M, Stace H. Disability communities: transformative research for social justice. In: Denzin NK, Lincoln YS, editors. The Sage Handbook of qualitative research. 4th ed. London: Sage Publications; 2011; p. 227–242.
   Google Scholar
• Nind M, Vinha H. 2012. Doing research inclusively, doing research well? Report of the study: quality and capacity in inclusive research with people with learning disabilities. University of Southampton. Available from: http://www.southampton.ac.uk/education/research/projects/quality_and_capacity_in_inclusive_research_with_learning_disabilities.
   Google Scholar
• Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol. 2007;109:8–14.
   Google Scholar
• CanChild. 2021. Gross motor function classification system-expanded and revised. Available from: https://canchild.ca/en/resources/42-gross-motor-function-classification-system-expanded-revised-gmfcs-e-r.
   Google Scholar
• Hidecker MJC, Paneth N, Rosenbaum PL, et al. Developing and validating the communication function classification system for individuals with cerebral palsy. Dev Med Child Neurol. 2011;53(8):704–710.
   PubMed Web of Science ®Google Scholar
• World Health Organisation. ICF international classification of functioning, disability and health. Geneva: WHO; 2001.
   Google Scholar
• Stewart DA, Lawless JJ, Shimmell LJ, et al. Social participation of adolescents with cerebral palsy: trade-offs and choices. Phys Occup Ther Pediatr. 2012;32(2):167–179.
   PubMed Web of Science ®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
• Dang VM, Colver A, Dickinson HO, et al. Predictors of participation of adolescents with cerebral palsy: a European multi-centre longitudinal study. Res Develop Disabil. 2015;36:551–564.
   Web of Science ®Google Scholar
• Colver A, Thyen U, Arnaud C, et al. Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study. Arch Phys Med Rehabil. 2012;93(12):2154–2164.
   PubMed Web of Science ®Google Scholar
• Rosenbaum P, Gorter JW. The ‘F-words’ in 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
• Chin C, Reid F. 2015. Health disability sports partnership year two report. Disability Sport Wales.
   Google Scholar
• Pickering DM. Shared perspectives: ‘The embodiment of disabled children and young people’s voices about participating in recreational activities. In: Runswick-Cole K, Liddiard KM, Curran T, editors. The Palgrave handbook of disabled children’s childhood studies. Frankfurt: Palgrave Macmillan; 2017; p. 101–121.
   Google Scholar
• Gibson BE, King G, Teachman G et al. Assembling activity/setting participation with disabled young people. Sociol Health Illn. 2016;39(4):497–512.
   PubMed Web of Science ®Google Scholar
• Swain J, French S. Towards an affirmation model of disability. Disabil Soc. 2000;15(4):569–582.
   Web of Science ®Google Scholar
• Imms C, Adair B, Keen D, et al. ‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev Med Child Neurol. 2016;58(1):29–38.
   PubMed Web of Science ®Google Scholar
• Anaby D, Khetani M, Piskur B, et al. Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice. Disab Rehabil 2022;44(9):1746–1757.
   PubMed Web of Science ®Google Scholar
• Devakumar D, Spencer N, Waterston T. The role of advocacy in promoting better child health. Arch Dis Child. 2016;101(7):596–599.
   PubMed Web of Science ®Google Scholar
• Wickenden M. Talking to teenagers: using anthropological methods to explore identity and the lifeworlds of young people who use AAC. Commun Disorders Q. 2011;32(3):151–163.
   Web of Science ®Google Scholar
• Wickenden M, Kembhavi-Tam G. Ask us too! Doing participatory research with disabled children in the global South. Childhood. 2014;21(3):400–417.
   Web of Science ®Google Scholar
• Watson D, Emery C. Children’s social and emotional well-being in schools: a critical perspective. Bristol: Policy Press; 2012.
   Google Scholar
• Mpundu-Kaambwa C, Chen G, Huynh E, et al. A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy. Qual Life Res. 2018;27(7):1781–1799.
   PubMed Web of Science ®Google Scholar
• Opheim A, Jahnsen R, Olsson E, et al. Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study. Dev Med Child Neurol. 2009;51(5):381–388.
   PubMed Web of Science ®Google Scholar
• Suave K. Pain in children with cerebral palsy. Sunny Hill Health Centre for Children; 2010. Available from: www.childdevelopment.ca.
   Google Scholar
• Voorman JM, Dallmeijer AJ, Van Eck M, et al. Social functioning and communication in children with cerebral palsy: association with disease characteristics and personal and environmental factors. Dev Med Child Neurol. 2010;52(5):441–447.
   PubMed Web of Science ®Google Scholar
• Lyons EA. An exploration of comfort and discomfort amongst children and young people with severe physical, learning and communication difficulties who depend on postural management equipment [PhD thesis]. Northumbria University. 2013.
   Google Scholar
• Simmons B, Watson D. The PMLD ambiguity: articulating the lifeworlds of children with profound and multiple learning disabilities. London: Karnac; 2014.
   Google Scholar
• Beresford B. Working on well-being: researchers’ experiences of a participative approach to understanding the subjective WB of disabled young people. Children Soc. 2012;26:234–240.
   Web of Science ®Google Scholar
• Creswell JW, Poth CN. Qualitative inquiry and research design: choosing among five approaches. Thousand Oaks (CA): Sage publications; 2016.
   Google Scholar
• Yin R. Case study research: designs and methods. 6th ed. Los Angeles: Sage Publications; 2018.
   Google Scholar
• Welsh Government. Welsh index of multiple deprivation. Open Government Licence on the National Archive [Accessed 11.04.23]. Welsh Government; 2014.
   Google Scholar
• Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017;3:13.
   PubMedGoogle Scholar
• National Institute for Health Research (NIHR). Involve; 2015. Available from: www.NIHR/INVOLVE/org.
   Google Scholar
• Hanna SE, Bartlett DJ, Rivard LM, et al. Reference curves for the gross motor function measure: percentiles for clinical description and tracking over time among children with cerebral palsy. Phys Ther. 2008;88(5):596–607.
   PubMed Web of Science ®Google Scholar
• Mannay D. Visual, narrative, and creative research methods: application, reflection and ethics. Oxon: Routledge; 2015.
   Google Scholar
• Spradley JP. Participant observation. Illinois: Waveland Press; 2016.
   Google Scholar
• Flick U. An introduction to qualitative research. 5th ed. London, Thousand Oaks (CA): Sage publications; 2014.
   Google Scholar
• Feldner HA, Logan SW, Galloway JC. Mobility in pictures: a participatory photovoice narrative study exploring powered mobility provision for children and families. Disabil Rehabil Assist Technol. 2019;14(3):301–311.
   PubMed Web of Science ®Google Scholar
• Riley DS, Barber MS, Kienle GS, et al. CARE guidelines for case reports: explanation and elaboration document. J Clin Epidemiol. 2017;89:218–235.
   PubMed Web of Science ®Google Scholar
• Guba E, Lincoln Y. Criteria for assessing the trustworthiness of naturalistic inquiries. ECTJ. 1981;29:75e91.
   Google Scholar
• Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. Los Angeles: Sage; 2013.
   Google Scholar
• Ockelford A. Music in the education of children with severe or profound learning difficulties: issues in current UK provision, a new conceptual framework, and proposals for research. Psychol Music. 2000;28(2):197–217.
   Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.
   PubMed Web of Science ®Google Scholar
• Sandelowski M. Rigor or rigor mortis: the problem of rigor in qualitative research revisited. ANS Adv Nurs Sci. 1993;16(2):1–8.
   PubMed Web of Science ®Google Scholar
• Harré́ R, Langenhove L. Positioning theory: moral contexts of intentional action. Malden (MA): Oxford; 1999.
   Google Scholar
• Langenhove LV, Harré R. Cultural stereotypes and positioning theory. J Theor Soc Behav. 1994;24(4):359–372.
   Web of Science ®Google Scholar
• Harré R. Positioning theory. The International Encyclopaedia of Language and Social Interaction. Chichester: John Wiley and Sons; 1999.
   Google Scholar
• Shields N, King M, Corbett M, et al. Is participation among children with intellectual disabilities in outside school activities similar to their typically developing peers? A systematic review. Dev Neurorehabil. 2014;17(1):64–71.
   PubMed Web of Science ®Google Scholar
• Shields N, Synnot A, Kearns C, et al. The extent, context and experience of participation in out-of-school activities among children with disability. Res Dev Disabil. 2015;47:165–174.
   PubMed Web of Science ®Google Scholar
• Tideman Svensson. Young people with intellectual disability—the role of self-advocacy in a transformed Swedish welfare system. Int J Qual Stud Health Well being. 2015;10(1):25100.
   PubMedGoogle Scholar
• Kolehmainen N, Marshall J, Hislop J, et al. Implementing participation-focused services: a study to develop the method for using audit and feedback in participation implementation (MAPi). Child Care Health Dev. 2020;46(1):37–45.
   PubMed Web of Science ®Google Scholar
• Runswick-Cole K, Curran T, Liddiard K, editors. The Palgrave handbook of disabled children’s childhood studies. London: Palgrave Macmillan; 2018. p. 425–442.
   Google Scholar
• Curran T, Runswick-Cole K. Disabled children’s childhood studies: a distinct approach? Disability and Society. 2014;29(10):1617–1630.
   Web of Science ®Google Scholar