Exploring participation in family activities among Serbian children with cerebral palsy and children with typical development: diversity, frequency, children’s presence, and engagement

References

• Dunst CJ, Bruder MB, Trivette CM, et al. Characteristics and consequences of everyday natural learning opportunities. Topics Early Child Spec Educ. 2001;21(2):68–92.
   Web of Science ®Google Scholar
• Bronfenbrenner U. Ecology of the family as a context for human development: research perspectives. Dev Psychol. 1986;22(6):723–742.
   Web of Science ®Google Scholar
• Bronfenbrenner U. Environments in developmental perspective: theoretical and operational models. In: Friedman SL, Wachs TD, editors. Measuring environment across the life span: emerging methods and concepts. Washington (DC): American Psychological Association; 1999. p. 3–28.
   Google Scholar
• Axelsson AK, Wilder J. Frequency of occurrence and child presence in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. Int J Dev Disabil. 2014;60(1):13–25.
   Web of Science ®Google Scholar
• World Health Organization. International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY). Geneva (Switzerland): World Health Organization; 2007.
   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
• Imms C. The nature of participation. In: Imms C, Dido G, editors. Participation: optimising outcomes in childhood-onset neurodisability. London: Mac Keith Press; 2020. p. 5–11.
   Google Scholar
• Granlund M, Arvidsson P, Niia A, et al. Differentiating activity and participation of children and youth with disability in Sweden: a third qualifier in the International Classification of Functioning, Disability, and Health for Children and Youth? Am J Phys Med Rehabil. 2012;91(13):S84–S96.
   PubMed Web of Science ®Google Scholar
• Oskoui M, Coutinho F, Dykeman J, et al. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2013;55(6):509–519.
   PubMed Web of Science ®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;49(109):8–14.
   Google Scholar
• Arakelyan S, Maciver D, Rush R, et al. Family factors associated with participation of children with disabilities: a systematic review. Dev Med Child Neurol. 2019;61(5):514–522.
   PubMed Web of Science ®Google Scholar
• Palisano RJ, Chiarello LA, King GA, et al. Participation-based therapy for children with physical disabilities. Disabil Rehabil. 2012;34(12):1041–1052.
   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
• Schlebusch L, Huus K, Samuels A, et al. Participation of young people with disabilities and/or chronic conditions in low- and middle-income countries: a scoping review. Dev Med Child Neurol. 2020;62(11):1259–1265.
   PubMed Web of Science ®Google Scholar
• Pejovic-Milovancevic M, Stankovic M, Mitkovic-Voncina M, et al. Perceptions on support, challenges and needs among parents of children with autism: the Serbian experience. Psychiatr Danub. 2018;30(6):354–364.
   PubMedGoogle Scholar
• Mihic I, Rajic M, Krstic T, et al. “Naša priča” – program podrške roditeljima dece sa smetnjama u razvoju: primer dobre prakse u predškolskim ustanovama [“Our story”: support program for parents of children with disabilities: example of good practice in preschool institutions]. Spec Eduk i Rehabilitacija. 2016;15(4):477–498.
   Google Scholar
• Milačić-Vidojević I, Tošković O, Dragojević N, et al. Experienced and anticipated discrimination in persons with physical disabilities in Serbia. Eur j Interdiscip Stud. 2017;7(2):66.
   Google Scholar
• Milačić‐Vidojević I, Čolić M, Tošković O, et al. People with physical disability in Serbia: relationship between internalized stigma, experienced and anticipated discrimination, and empowerment. Scand J Psychol. 2020;61(2):290–296.
   PubMed Web of Science ®Google Scholar
• Kovačević J, Maćešić-Petrović D. Inclusive education – Empirical experience from Serbia. Int J Educ Dev. 2012;32(3):463–470.
   Web of Science ®Google Scholar
• Disability Rights International, Mental Disability Rights Initiative of Serbia [Internet]. Serbia’s Forgotten Children (June 2021). Belgrade (Serbia): Disability Rights International; 2021 [cited 2021 Jun 29]. Available from: https://www.driadvocacy.org/report-serbias-forgotten-children/
   Google Scholar
• Kaljača S, Dučić B, Cvijetić M. Participation of children and youth with neurodevelopmental disorders in after-school activities. Disabil Rehabil. 2019;41(17):2036–2048.
   PubMed Web of Science ®Google Scholar
• Milićević M. Home participation of children with and without cerebral palsy in Serbia: an exploratory study. Disabil Rehabil. 2020;42(25):3696–3706.
   PubMed Web of Science ®Google Scholar
• Milićević M. Community participation of children with cerebral palsy in Serbia: conceptual considerations and evaluation. Belgrade (Serbia): Institute of Criminological and Sociological Research; 2020.
   Google Scholar
• Milićević M, Nedović G. The relationship between family-centeredness of service delivery and parental satisfaction with home and community participation of their children with cerebral palsy. Spec Eduk i Rehabilitacija. 2020;19(1):27–41.
   Google Scholar
• Van Keer I, Van Leeuwen K, Maes B. Exploring family activities and child engagement: a study on children with a significant cognitive and motor developmental delay. J Appl Res Intellect Disabil. 2019;32(4):779–791.
   PubMed Web of Science ®Google Scholar
• Axelsson AK, Granlund M, Wilder J. Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. Child Care Health Dev. 2013;39(4):523–534.
   PubMed Web of Science ®Google Scholar
• Axelsson AK. Children with profound intellectual and multiple disabilities and their participation in family activities [dissertation]. Jönköping (Sweden): Jönköping University; 2014.
   Google Scholar
• Axelsson AK. The role of the external personal assistants for children with profound intellectual and multiple disabilities working in the children’s home. J Appl Res Intellect Disabil. 2015;28(3):201–211.
   PubMed Web of Science ®Google Scholar
• Stevelink SAM, van Brakel WH. The cross-cultural equivalence of participation instruments: a systematic review. Disabil Rehabil. 2013;35(15):1256–1268.
   PubMed Web of Science ®Google Scholar
• Ministry of Labor, Employment, Veterans and Social Affairs. Law on Social Protection [Internet]. Belgrade (Serbia): Ministry of Labor, Employment, Veterans and Social Affairs; 2011 [cited 2020 Jul 25]. 75 p. Available from: https://www.minrzs.gov.rs/sites/default/files/2018-11/Zakon%20o%20socijalnoj%20zastiti.pdf
   Google Scholar
• Palisano RJ, Rosenbaum P, Bartlett D, et al. Gross Motor Function Classification System – Expanded and Revised. Hamilton (Canada): CanChild Centre for Childhood Disability Research, McMaster University; 2007.
   Google Scholar
• Eliasson A-C, Krumlinde-Sundholm L, Rösblad B, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol. 2006;48(7):549–554.
   PubMed Web of Science ®Google Scholar
• Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol. 2007;44(5):309–316.
   Google Scholar
• World Health Organization. International statistical classification of diseases and related health problems (ICD10). Geneva (Switzerland): WHO; 2004.
   Google Scholar
• Fritz CO, Morris PE, Richler JJ. Effect size estimates: current use, calculations, and interpretation. J Exp Psychol Gen. 2012;141(1):2–18.
   PubMed Web of Science ®Google Scholar
• Cohen J. Statistical power analysis for the behavioral sciences. Hillsdale (NJ): Lawrence Earlbaum Associates; 1988.
   Google Scholar
• Milićević M. Promena dinamike porodičnih aktivnosti u porodicama dece s cerebralnom paralizom [Changes in family activities dynamics in families of children with cerebral palsy]. Zbornik Instituta za Kriminološka i Sociološka Istraživanja. 2016;35(3):19–32.
   Google Scholar
• Shikako-Thomas K, Majnemer A, Law M, et al. Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review. Phys Occup Ther Pediatr. 2008;28(2):155–169.
   PubMedGoogle Scholar
• Milićević M, Nedović G. Comparative study of home and community participation among children with and without cerebral palsy. Res Dev Disabil. 2018;80:74–83.
   PubMed Web of Science ®Google Scholar
• Kalleson R, Jahnsen R, Østensjø S. Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment? Disabil Rehabil. 2021 [cited 2021 Apr 21]; [11 p.]. DOI:https://doi.org/10.1080/09638288.2021.1894608.
   Google Scholar
• King G, Law M, King S, Rosenbaum P, et al. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr. 2003;23(1):63–90.
   PubMedGoogle Scholar
• World Bank Global Poverty Working Group [Internet]. Poverty headcount ratio at national poverty lines (% of population). Belgrade (Serbia): World Bank; 2021 [cited 2021 June 25]. Available from: https://data.worldbank.org/indicator/SI.POV.NAHC?locations=RS
   Google Scholar
• Statistical Office of the Republic of Serbia [Internet]. Survey on income and living conditions. Stat Release. Belgrade (Serbia): Statistical Office of the Republic of Serbia; 2016 [cited Jun 29]. Available from: https://publikacije.stat.gov.rs/G2016/PdfE/G20161084.pdf
   Google Scholar
• Statistical Office of the Republic of Serbia. Statistical Yearbook of Serbia 2015. Revised ed. Belgrade (Serbia): Statistical Office of the Republic of Serbia; 2015.
   Google Scholar
• Davey H, Imms C, Fossey E. “Our child’s significant disability shapes our lives”: experiences of family social participation. Disabil Rehabil. 2015;37(24):2264–2271.
   PubMed Web of Science ®Google Scholar
• Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehabil. 1987;68(12):828–832.
   PubMed Web of Science ®Google Scholar
• Cosbey J, Johnston SS, Dunn ML. Sensory processing disorders and social participation. Am J Occup Ther. 2010;64(3):462–473.
   PubMed Web of Science ®Google Scholar
• Taub DE, Greer KR. Physical activity as a normalizing experience for school-age children with physical disabilities: implications for legitimation of social identity and enhancement of social ties. J Sport Soc Issues. 2000;24(4):395–414.
   Google Scholar
• Ballin L, Balandin S. An exploration of loneliness: communication and the social networks of older people with cerebral palsy. J Intellect Dev Disabil. 2007;32(4):315–327.
   PubMed Web of Science ®Google Scholar
• Batorowicz B, King G, Mishra L, et al. An integrated model of social environment and social context for pediatric rehabilitation. Disabil Rehabil. 2016;38(12):1204–1215.
   PubMed Web of Science ®Google Scholar
• Bulić D, Oreb Nikolić JI. Angažman majki djece s teškoćama u razvoju u aktivnostima svakodnevnog života [Engagement of mothers of children with disabilities in the activities of daily life]. Hrvatska Revija za Rehabilitacijska Istraživanja. 2012;48(2):1–12.
   Google Scholar
• Luijkx J, van der Putten AAJ, Vlaskamp C. Time use of parents raising children with severe or profound intellectual and multiple disabilities. Child Care Health Dev. 2017;43(4):518–526.
   PubMed Web of Science ®Google Scholar
• Dutra LR, Coster WJ, Neves JAB, et al. Determinants of time to care for children and adolescents with disabilities. OTJR. 2021;41(1):15–23.
   PubMed Web of Science ®Google Scholar
• Phares V, Fields S, Kamboukos D. Fathers’ and mothers’ involvement with their adolescents. J Child Fam Stud. 2009;18(1):1–9.
   Web of Science ®Google Scholar
• Blažević Simić A, Đurašin M. Oprostite, čije slobodno vrijeme?! Iskustvo slobodnog vremena obitelji djeteta s teškoćama u razvoju [Excuse me, whose leisure time?! Perceptions of family leisure amongst families with children with developmental disabilities. Hrvatska revija za rehabilitacijska istraživanja. 2020;56(1):104–132.
   Google Scholar
• Dunn L, Gardner J. Household task participation of children with and without physical disability. Am J Occup Ther. 2013;67(5):e100–e105.
   PubMedGoogle Scholar
• Harr N, Dunn L, Price P. Case study on effect of household task participation on home, community, and work opportunities for a youth with multiple disabilities. Work. 2011;39(4):445–453.
   PubMedGoogle Scholar
• do Amaral MF, Drummond AdF, Coster WJ, et al. Household task participation of children and adolescents with cerebral palsy, Down syndrome and typical development. Res Dev Disabil. 2014;35(2):414–422.
   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
• Chien C-W, Lin C-Y. Community participation of school-age children: who is at risk of restricted participation? Phys Occup Ther Pediatr. 2021 [cited 2021 Apr 21]; [17 p.]. DOI:https://doi.org/10.1080/01942638.2021.1900489.
   Google Scholar
• 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.
   Web of Science ®Google Scholar
• Imms C, Mathews S, Nicola Richmond K, et al. Optimising leisure participation: a pilot intervention study for adolescents with physical impairments. Disabil Rehabil. 2016;38(10):963–971.
   PubMed Web of Science ®Google Scholar
• Lim CY, Law M, Khetani M, et al. Participation in out-of-home environments for young children with and without developmental disabilities. OTJR Occup Particip Heal. 2016;36(3):112–125.
   PubMed Web of Science ®Google Scholar
• 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(5):337–342.
   PubMed Web of Science ®Google Scholar
• Imms C, King G, Majnemer A, et al. Leisure participation-preference congruence of children with cerebral palsy: a Children’s Assessment of Participation and Enjoyment International Network descriptive study. Dev Med Child Neurol. 2017;59(4):380–387.
   PubMed Web of Science ®Google Scholar
• Alghamdi MS, Chiarello LA, Palisano RJ, et al. Understanding participation of children with cerebral palsy in family and recreational activities. Res Dev Disabil. 2017;69:96–104.
   PubMed Web of Science ®Google Scholar
• Keogh BK, Garnier HE, Bernheimer LP, et al. Models of child-family interactions for children with developmental delays: Child-driven or transactional? Am J Mental Retard. 2000;105(1):32–46.
   PubMedGoogle Scholar
• King G, Petrenchik T, Law M, et al. The enjoyment of formal and informal recreation and leisure activities: a comparison of school-aged children with and without physical disabilities. Int J Disabil Dev Educ. 2009;56(2):109–130.
   Web of Science ®Google Scholar
• King G, Law M, Hanna S, et al. Predictors of the leisure and recreation participation of children with physical disabilities: a structural equation modeling analysis. Child Heal Care. 2006;35(3):209–234.
   Web of Science ®Google Scholar
• Willis C, Girdler S, Thompson M, et al. Elements contributing to meaningful participation for children and youth with disabilities: a scoping review. Disabil Rehabil. 2017;39(17):1771–1784.
   PubMed Web of Science ®Google Scholar