Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences

References

• Dunst CJ, Bruder MB, Trivette CM, Hamby DW. Everyday activity settings, natural learning environments, and early intervention practices. J Pol Pract Intellect Disabil 2006:3:3–10
   Google Scholar
• Nakken H, Vlaskamp C. Joining forces: supporting individuals with profound multiple learning disabilities. Learn Disabil Rev 2002:7:10–15
   Google Scholar
• Nakken H, Vlaskamp C. A need for a taxonomy for profound intellectual and multiple disabilities. J Pol Pract Intellect Disabil 2007:4:83–7
   Google Scholar
• United Nations General Assembly. Convention on the rights of the child. New York: United Nations. (Resolution adopted by the general assembly/united nations,); 1989
   Google Scholar
• SFS 1993:387. Lagen om stöd och service till vissa funktionshindrade (LSS) [act on support and service to certain disabled individuals]. Stockholm: Socialdepartementet
   Google Scholar
• SFS 2010:110. Socialförsäkringsbalk [social insurance code]. Stockholm: Socialdepartementet [Ministry of Health and Social Affairs]
   Google Scholar
• Wilder J. Proximal processes of children with profound multiple disabilities [dissertation]. Stockholm: Stockholm University; 2008
   Google Scholar
• Spagnola M, Fiese BH. Family routines and rituals: a context for development in the lives of young children. Infant Young Child 2007:20:284–99
   Web of Science ®Google Scholar
• Dunst CJ, Bruder MB, Trivette CM, et al. Characteristics and consequences of everyday natural learning opportunities. Top Early Child Spec Educ 2001:21:68–92
   Web of Science ®Google Scholar
• Badley EM. Enhancing the conceptual clarity of the activity and participation components of the international classification of functioning, disability, and health. Soc Sci Med 2008:66:2335–45
   PubMed Web of Science ®Google Scholar
• World Health Organization. International classification of functioning, disability and health: children and youth version: ICF-CY. Geneva: World Health Organization; 2007
   Google Scholar
• Coster W, Khetani MA. Measuring participation of children with disabilities: issues and challenges. Disabil Rehabil 2008:30:639–48
   PubMed Web of Science ®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 2012:91:84–96
   PubMed Web of Science ®Google Scholar
• Maxwell G. Bringing more to participation: participation in school activities of persons with disability within the framework of the international classification of functioning, disability and health for children and youth (ICF-CY) [dissertation]. [Jönköping]: Jönköping University; 2012
   Google Scholar
• Granlund M, Wilder J, Almqvist L. Severe multiple disabilities. In: Wehmeyer M, ed. The Oxford handbook of positive psychology and disability. NewYork: Oxford University Press; 2013:452–74
   Google Scholar
• McWilliam RA. Children’s engagement questionnaire. Chapel Hill, NC: Frank porter Graham Child Development Center, University of North Carolina at Chapel Hill; 1991
   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 2013:59:1–18
   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 2013:39:523–34
   PubMed Web of Science ®Google Scholar
• McWilliam RA, Scarborough AA, Kim H. Adult interactions and child engagement. Early Educ Dev 2003:14:7–27
   Google Scholar
• Kramer JM, Hammel J. “I do lots of things”: children with cerebral palsy’s competence for everyday activities. Int J Disabil Dev Ed 2011:58:121–36
   Web of Science ®Google Scholar
• King G, Law M, King S, et al. Measuring children’s participation in recreation and leisure activities: construct validation of the CAPE and PAC. Child Care Health Dev 2005:33:28–39
   Web of Science ®Google Scholar
• King G, Law M, King S, et al. Children’s assessment of participation and enjoyment (CAPE) and preferences for activities of children (PAC). San Antonio (TX): Harcourt Assessment, Inc; 2004
   Google Scholar
• Maxwell G, Augustine L, Granlund M. Does thinking and doing the same thing amount to involved participation? Empirical explorations for finding a measure of intensity for a third ICF-CY qualifier. Dev Neurorehabil 2012:15:274–83
   PubMed Web of Science ®Google Scholar
• Simeonsson RJ, Leonardi M, Lollar D, et al. Applying the IUnternational Classification of Functioning, Disability and Health (ICF) to measure childhood disability. Disabil Rehabil 2003:25:602–10
   PubMed Web of Science ®Google Scholar
• Horn E, Kang J. Supporting young children with multiple disabilities: what do we know and what do we still need to learn? Top Early Child Spec Educ 2012:31:241–8
   PubMed Web of Science ®Google Scholar
• Heah T, Case T, McGuire B, Law M. Successful participation: the lived experience among children with disabilities. Can J Occup Ther 2007:74:38–47
   PubMedGoogle Scholar
• Whaley KT, Bennett TC. Promoting engagement in early childhood special education. Teach Except Child 1991:23:51–4
   Google Scholar
• Bedell GM, Cohn ES, Dumas HM. Exploring parents’ use of strategies to promote social participation of school-age children with acquired brain injuries. Am J Occup Ther 2005:59:273–84
   PubMed Web of Science ®Google Scholar
• Krippendorff K. Content analysis: an introduction to its methodology. 3rd ed. Thousand Oaks (CA) London: SAGE; 2013
   Google Scholar
• Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs 2008:62:107–15
   PubMed Web of Science ®Google Scholar
• Atlas.ti. The qualitative data analysis & research software. 2012. Available from: http://www.atlasti.com/index.html [last accessed 14 May 2012]
   Google Scholar
• Maxwell G, Granlund M. How are conditions for participation expressed in education policy documents? A review of documents in Scotland and Sweden. Eur J Spec Needs Educ 2011:26:251–72
   Google Scholar
• Hammel J, Magasi S, Heinemann A, et al. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil 2008:30:1445–60
   PubMed Web of Science ®Google Scholar
• Kramer JM, Olsen S, Mermelstein M, et al. Youth with disabilities’ perspectives of the environment and participation: a qualitative meta-synthesis. Child Care Health Dev 2012:38:763–77
   PubMed Web of Science ®Google Scholar
• Arvidsson P, Granlund M, Thyberg M. Factors related to self-rated participation in adolescents and adults with mild intellectual disability–a systematic literature review. J Appl Res Intellect Disabil 2008:21:277–91
   Web of Science ®Google Scholar
• Wilder J, Granlund M. Behaviour style and interaction between seven children with multiple disabilities and their caregivers. Child Care Health Dev 2003:29:559–67
   PubMed Web of Science ®Google Scholar
• Dunst CJ, Trivette CM, Raab M, Masiello TL. Early child contingency learning and detection: research evidence and implications for practice. Exceptionality 2008:16:4–17
   Web of Science ®Google Scholar
• Sameroff AJ. The transactional model of development: how children and contexts shape each other. 1 ed. Washington, DC: American Psychological Association; 2009
   Google Scholar
• Verdugo MA, Schalock R, Keith K, Stancliffe R. Quality of life and its measurement: important principles and guidelines. J Intellect Disabil Res 2005:49:707–17
   PubMed Web of Science ®Google Scholar
• Coster W, Law M, Bedell G, et al. Development of the participation and environment measure for children and youth: conceptual basis. Disabil Rehabil 2012:34:238–46
   PubMed Web of Science ®Google Scholar