Everyday Life Situations of School-Aged Children with Severe Disabilities: What are the Goals for the Future? An Exploratory Study

Authors

  • Margareta Adolfsson CHILD, School of Education and Communication, Jönköping University, The Swedish Institute for Disability Research, Jönköping University, Box 1026, SE-551 11 Jönköping, Sweden
  • Christina Westerberg Department of Special Education, Faculty of Social Sciences, Stockholm University, SE-106 91 Stockholm, Sweden
  • Kerstin Möller The Swedish Institute for Disability Research, Örebro University, School of Health and Medical Science, Örebro University, The University Hospital, Centre for Audiological Research, Örebro, SE-701 82 Örebro, Sweden

DOI:

https://doi.org/10.6000/2292-2598.2014.02.01.3

Keywords:

Children, classification, disability, everyday life situation, ICF-CY, involvement, participation, special education

Abstract

This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure environments for a group of school-aged children with severe disabilities, including complex disorders and a combination of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version (ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and participation in school or work were of highest importance, but few reported ELS involved directly interacting with other children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore, interventions would be focused on the overall goal that children with severe disabilities take initiatives to become independent and to form relationships with others.

References

Adolfsson M. Applying the ICF-CY to identify everyday life situations of children and youth with disabilities, in School of Education and Communication, Jönköping University: Jönköping 2011.

Guralnick MJ. Connections between mental health and peer relationships for young children with developmental delays, in Regional ISEI conference I.S.o.E. Intervention, Editor 2013; St Petersburg.

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 Develop 2013; 39(4): 523-34. http://dx.doi.org/10.1111/cch.12044 DOI: https://doi.org/10.1111/cch.12044

Cowart BL, et al. Social skills and recreational preferences of children with and without disabilities. North Am J Psychol 2004; 6(1): 27-42.

Luttropp A, Granlund M. Interaction - it depends - a comparative study of interaction in preschools between children with intellectual disability and children with typical development. Scand J Disability Res 2010; 12(3): 151-64. http://dx.doi.org/10.1080/15017410903175677 DOI: https://doi.org/10.1080/15017410903175677

Guralnick MJ. Early intervention approaches to enhance the peer-related social competence of young children with developmental delays. Infants Young Children 2010; 23(2): 73-83. http://dx.doi.org/10.1097/IYC.0b013e3181d22e14 DOI: https://doi.org/10.1097/IYC.0b013e3181d22e14

Granlund M, et al. Differentiating activity and participation of children and youth with disability in Sweden: A third qualifier in ICF-CY? Am J Phys Med Rehabilit 2012; 91(13): S84-S96. http://dx.doi.org/10.1097/PHM.0b013e31823d5376 DOI: https://doi.org/10.1097/PHM.0b013e31823d5376

Wilder J. Proximal processes of children with profound multiple disabilities, in Psychology, Stockholm University: Stockholm 2008.

Guralnick MJ, et al. Promoting the peer-related social development of young children with mild developmental delays: Effectiveness of comprehensive intervention. Am J Mental Retardat 2006; 111(5): 336-56. http://dx.doi.org/10.1352/0895-8017(2006)111[336:PTPSDO]2.0.CO;2 DOI: https://doi.org/10.1352/0895-8017(2006)111[336:PTPSDO]2.0.CO;2

WHO, International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY), Geneva: World Health Organization 2007.

Eriksson L. Participation and disability - a study of participation in school for children and youth with disabilities, Stockholm: Karolinska institutet, Department of Woman and Child Health, Child and Adolescent Psychiatric Unit 2006.

Simeonsson RJ, et al. Disability, health, secondary conditions and quality of life: Emerging issues in public health, in Issues in disability & health. The role of secondary conditions & quality of life, Simeonsson RJ, McDevitt LN, Ed. University of North Carolina: Chapel Hill: NC. 1999; pp. 239-255.

Maxwell G, Granlund M. How are conditions for participation expressed in education policy documents? A review of documents in Scotland and Sweden. Eur J Special Needs Educ 2011; 26(2): 251-72. http://dx.doi.org/10.1080/08856257.2011.563610 DOI: https://doi.org/10.1080/08856257.2011.563610

Almqvist L, Uys CJE, Sandberg A. The concepts of participation, engagement and flow: A matter of creating optimal play experiences. South Afr J Occupat Therapy 2007; 37(3): 8-13.

Piškur B, et al. Participation and social participation: are they distinct concepts? Clinical Rehabilitation 2013; (Early online August 29). http://dx.doi.org/10.1177/0269215513499029 DOI: https://doi.org/10.1177/0269215513499029

King G, et al. Out-of-school time activity participation profiles of children with physical disabilities: a cluster analysis. Child: care. Health Develop 2010; 36(5): 726-41. http://dx.doi.org/10.1111/j.1365-2214.2010.01089.x DOI: https://doi.org/10.1111/j.1365-2214.2010.01089.x

Heah T, et al. Successful participation: The lived experience among children with disabilities. Can J Occupat Therapy 2007; 74: 38-47. http://dx.doi.org/10.2182/cjot.06.10 DOI: https://doi.org/10.2182/cjot.06.10

Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child: care. Health Develop 2012; 38(4): 457-63. http://dx.doi.org/10.1111/j.1365-2214.2011.01338.x DOI: https://doi.org/10.1111/j.1365-2214.2011.01338.x

Rosenbaum P, et al. A report: the definition and classification of cerebral palsy. Develop Med Child Neurol 2007; 49(s109): 8-14. DOI: https://doi.org/10.1111/j.1469-8749.2007.tb12610.x

Aicardi J, Bax M. Cerebral Palsy, in Diseases of the Nervous System in Childhood. Aicardi J, Ed. Mac Keith Press: London 1998; pp. 210-244.

Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Develop Med Child Neurol 2002; 44(5): 309-16. http://dx.doi.org/10.1111/j.1469-8749.2002.tb00816.x DOI: https://doi.org/10.1111/j.1469-8749.2002.tb00816.x

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 Develop Disabilit 2013; 59(1): 1-18. DOI: https://doi.org/10.1179/2047387712Y.0000000008

Tellevik JM, Elmerskog B. Activitybased intervention for multiple-disabled visually impaired people. Br J Visual Impairment 2009; 27(3): 204-20. http://dx.doi.org/10.1177/0264619609106361 DOI: https://doi.org/10.1177/0264619609106361

Raghavendra P, et al. School participation and social networks of children with complex communication needs, physical disabilities, and typically developing peers. Augmentative Alternative Commun 2012; 28(1): 33-43. http://dx.doi.org/10.3109/07434618.2011.653604 DOI: https://doi.org/10.3109/07434618.2011.653604

Law M, et al. Participation of children with physical disabilities: relationships with diagnosis, physical function, and demographic variables. Scand J Occup Ther 2004; 11(4): 156-62. http://dx.doi.org/10.1080/11038120410020755 DOI: https://doi.org/10.1080/11038120410020755

Lee AM. Using the ICF-CY to organise characteristics of children's functioning. Disabil Rehabil 2011; 33(7): 605-16. http://dx.doi.org/10.3109/09638288.2010.505993 DOI: https://doi.org/10.3109/09638288.2010.505993

Simeonsson RJ. Defining and classifying disability in children, in Workshop on Disability in America, a New Look: summary and papers, Field MJ, Jette AM, Martin L, Eds. The National Academies Press Washington, DC 2006; pp. 67-87.

Harty M, Joseph L, Wilder J. Social networks and support of families: towards positive family functioning. South Afr J Occupat Therapy 2007; 37(3): 18-23.

Bronfenbrenner U. Ecological systems theory. Ann Child Develop 1989; 22: 723-42.

Bornman J, Rose J. Believe that all can achieve. Increasing classroom participation in learners with special support needs, Pretoria: Van Shaik 2010.

Cardol M, De Jong BA, Qard CD. On autonomy and participation in rehabilitation. Disabil Rehabil 2002; 24(18): 970-74. http://dx.doi.org/10.1080/09638280210151996 DOI: https://doi.org/10.1080/09638280210151996

Government office. Swedish disability policy. 2004 Dec 10, 2010 [cited 2011 Apr 3 www.regeringen.se/sb/d/2197/ a/15254].

Stenhammar A-M, Lyssna på mig! Barn & ungdomar med funktionsnedsättningar vill vara delaktiga i möten med samhällets stödsystem En systematisk kunskapsöversikt [Listen to me! Children & young people with disabilities want to be involved in meetings with community support systems. A systematic review], in School of Health and Society, [Master thesis]. Halmstad University: Halmstad 2010.

SOSFS, Ändring i föreskrifterna och allmänna råden (SOSFS 2007:10) om samordning av insatser för habilitering och rehabilitering [Changes in regulations and guidelines (SOSFS 2007:10) coordinating the efforts of habilitation and rehabilitation], Socialstyrelsen [The Swedish National Board of Health and Welfare] 2008; 20.

PSM, Rullstolsmobility. Ett samverkansprojekt där målet är att säkra barn och ungdomars aktivitet, delaktighet och involvering i livssituationer.[Wheelchair mobility. A collaborative project aiming to ensure children and young people's activity, participation and involvement in life situations.], 2011, Specialpedagogiska Skolmyndigheten (SPSM) [National Agency for Special Needs Education and Schools], Riksförbundet för Rörelsehindrade Barn och Ungdomar (RBU) [National Association for Disabled Children and Young People], Synskadades Riksförbund (SRF) [Visually Impaired Association], and Allmänna Arvsfonden [The Swedish Inheritance Fund Commission].

Cieza A, et al. ICF linking rules: an update based on lessons learned. J Rehabilit Med 2005; 37(4): 212-18. http://dx.doi.org/10.1080/16501970510040263 DOI: https://doi.org/10.1080/16501970510040263

Simeonsson RJ, et al. Developmental and health assessment in rehabilitation with the ICF for Children and Youth, in Rehabilitation and health assessment. Applying ICF guidelines, Mpofu E, Oakland T, Ed. Springer: New York 2010; pp. 27-46.

Klang Ibragimova N, et al. Using content analysis to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for Children and Youth (ICF-CY). J Rehabilit Med 2011; 43(8): 728-33. http://dx.doi.org/10.2340/16501977-0831 DOI: https://doi.org/10.2340/16501977-0831

Colver A. What are we trying to do for disabled children? Curr Paediatr 2006; 16(7): 501-505. http://dx.doi.org/10.1016/j.cupe.2006.08.014 DOI: https://doi.org/10.1016/j.cupe.2006.08.014

Imms C. Children with cerebral palsy participate: A review of the literature. Disabil Rehabil 2008; 30(24): 1867-84. http://dx.doi.org/10.1080/09638280701673542 DOI: https://doi.org/10.1080/09638280701673542

Shogren KA, et al. Understanding the construct of self-determination: Examining the relationship between the Arc´s self-determination scale and the American institutes for research self-determination scale. Assess Effect Intervent 2008; 33: 94-107. http://dx.doi.org/10.1177/1534508407311395 DOI: https://doi.org/10.1177/1534508407311395

Carter EW, et al. Promoting self-determination for transition-age youth: Views of high school general and special educators. Exceptional Children 2008; 75(1): 55-70. DOI: https://doi.org/10.1177/001440290807500103

UNESCO, Open file on inclusive education: support materials for managers and administrator, Paris: UNESCO 2003.

Schenker R, Coster WJ, Parush S. Participation and activity performance of students with cerebral palsy within the school environment. Disabil Rehabil 2005; 27(10): 539-52. http://dx.doi.org/10.1080/09638280400018437 DOI: https://doi.org/10.1080/09638280400018437

Bedell G, 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(3): 273-84. http://dx.doi.org/10.5014/ajot.59.3.273 DOI: https://doi.org/10.5014/ajot.59.3.273

Majnemer A, et al. Determinants of life quality in school-age children with cerebral palsy. J Pediatr 2007; 151(5): 470-475.e3. DOI: https://doi.org/10.1016/j.jpeds.2007.04.014

Perenboom RJM, Chorus AMJ. Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2003; 25(11-12): 577-87. http://dx.doi.org/10.1080/0963828031000137081 DOI: https://doi.org/10.1080/0963828031000137081

Bornman J, Murphy J. Using the ICF in goal setting: Clinical application using Talking Mats. Disabil Rehabil Assist Technol 2006; 1(3): 145-54. http://dx.doi.org/10.1080/17483100612331392745 DOI: https://doi.org/10.1080/17483100612331392745

Lidström H. Möjligheter och hinder för barn med funktionshinder att vara delaktiga inför en intervention [Possibilities and obstacles for children with disabilities to participate in intervention planning], in Institutionen för Samhälls- och Beteendevetenskap, [Master thesis]. Mälardalens högskola: Västerås 2005.

SFS. Education act. Swedish governement offices. 2010; 800.

UN, UN Convention on the Rights of the Child, United Nations: New York 1989.

Badley EM. Enhancing the conceptual clarity of the activity and participation components of the International Classification of Functioning, Disability, and Health. Social Sci Med 2008; 66(11): 2335-45. http://dx.doi.org/10.1016/j.socscimed.2008.01.026 DOI: https://doi.org/10.1016/j.socscimed.2008.01.026

Lebeer J, et al. Identifying special educational needs: putting a new framework for graded learning support to the test. Eur J Special Needs Educ 2010; 25(4): 375-87. http://dx.doi.org/10.1080/08856257.2010.513542 DOI: https://doi.org/10.1080/08856257.2010.513542

Reindal SM. Disability, capability, and special education: towards a capability‐based theory. Eur J Special Needs Educ 2009; 24(2): 155-68. http://dx.doi.org/10.1080/08856250902793610 DOI: https://doi.org/10.1080/08856250902793610

Downloads

Published

2014-05-06

How to Cite

Adolfsson, M., Westerberg, C., & Möller, K. . (2014). Everyday Life Situations of School-Aged Children with Severe Disabilities: What are the Goals for the Future? An Exploratory Study. Journal of Intellectual Disability - Diagnosis and Treatment, 2(1), 21–32. https://doi.org/10.6000/2292-2598.2014.02.01.3

Issue

Section

General Articles