Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Instrument
2.2.1. Picture My Participation
2.2.2. Translation of the PMP-Chinese Version
2.3. Study Design and Procedures
2.4. Statistical Analysis
3. Results
3.1. Comparison of Frequency of Participation
3.2. Comparison of Desire-to-Change Activities
3.3. Level of Involvement for Desire-to-Change Activities
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
Abbreviations
ICF | International Classification of Functioning, Health, and Disability |
UNCRC | United Nations Convention on the Rights of the Child |
PMP-C | Chinese version of Picture My Participation |
UNICEF | United Nations Children’s Fund |
AAC | Augmentative and Alternative Communication |
Appendix A
Child No. | Child | Parent | # of Same Selection | |||||
---|---|---|---|---|---|---|---|---|
1st | 2nd | 3rd | 4th | 1st | 2nd | 3rd | ||
1 | 8th | 11th | 16th | 6th | 15th | 18th△ | 0 | |
2 | 4th | 12th | 15th | 15th | 16th | 18th | 1 | |
3 | 9th | 19th | 21th | 3rd | 15th | 21th | 1 | |
4 | 6th | 9th | 18th— | 13th | 18th | 1 | ||
5 | 12th | 8th | 11th | 6th | 18th | 0 | ||
6 | 19th | 9th | 15th | 18th△ | 12th△ | 1st | 0 | |
7 | 11th | 15th | 18th | 19th | 6th | 7th | 5th | 0 |
8 | 7th | 8th | 17th | 3rd | 7th | 21th | 1 | |
9 | 11th | 18th | 21th | 11th | 13th | 21th△ | 2 | |
10 | 3rd— | 5th | 8th | 17th | 5th | 11th | 21th | 1 |
11 | 8th | 19th | 13th | 0 | ||||
12 | 19th | 8th | 18th— | 5th | 6th | 7th | 0 | |
13 | 5th | 6th | 19th | 7th | 18th△ | 21th | 0 | |
14 | 5th | 12th | 16th | 1st △ | 5th | 18th△ | 1 | |
15 | 12th | 11th | 21th | 7th | 15th | 4th | 0 | |
16 | 18th— | 15th | 12th | 3rd | 15th | 21th | 1 | |
17 | 18th | 9th | 5th | 12th | 21th | 0 | ||
18 | 18th— | 13th | 11th | 18th△ | 21th | 1 | ||
19 | 8th | 21th | 15th | 6th | 13th | 7th | 0 | |
20 | 8th | 15th | 21th | 12th | 6th | 13th | 7th | 0 |
21 | 21th | 16th | 5th | 3th | 6th | 4th | 0 | |
22 | 18th — | 21th | 17th— | 6th | 8th | 1st | 0 | |
23 | 15th | 11th | 10th | 21th | 15th | 1 | ||
24 | 9th | 21th | 10th | 11th | 12th | 0 | ||
25 | 21th | 2nd | 5th | 6th | 11th | 0 | ||
26 | 21th | 7th | 8th | 6th | 15th | 18th△ | 0 | |
27 | 21th | 11th | 9th | 4th | 6th | 12th | 0 | |
28 | 15th | 14th | 3rd | 21th | 15th | 11th | 1 | |
29 | 11th | 5th | 6th | 12th | 2nd | 21th | 0 | |
30 | 10th | 16th | 15th | 9th | 0 |
References
- World Health Organization. The International Classification of Functioning, Disability and Health: ICF; World Health Organization: Geneva, Switzerland, 2001. [Google Scholar]
- World Health Organization. The International Classification of Functioning, Disability and Health-Child and Youth: ICF-CY; Health Organization: Geneva, Switzerland, 2007. [Google Scholar]
- Larson, R.W. Toward a psychology of positive youth development. Am. Psychol. 2000, 55, 170–183. [Google Scholar] [CrossRef] [PubMed]
- King, G. The meaning of life experiences: Application of a meta-model to rehabilitation sciences and services. Am. J. Orthopsychiatry 2004, 74, 72–88. [Google Scholar] [CrossRef] [PubMed]
- Darrah, J.; Law, M.C.; Pollock, N.; Wilson, B.; Russell, D.J.; Walter, S.D.; Rosenbaum, P.; Galuppi, B. Context therapy: A new intervention approach for children with cerebral palsy. Dev. Med. Child Neurol. 2011, 53, 615–620. [Google Scholar] [CrossRef] [PubMed]
- Palisano, R.J.; Chiarello, L.A.; King, G.; Novak, I.; Stoner, T.; Fiss, A. Participation-based therapy for children with physical disabilities. Disabil. Rehabil. 2012, 34, 1041–1052. [Google Scholar] [CrossRef] [PubMed]
- Anaby, D.R.; Law, M.C.; Majnemer, A.; Feldman, D. Opening doors to participation of youth with physical disabilities: An intervention study. Can. J. Occup. Ther. 2016, 83, 83–90. [Google Scholar] [CrossRef] [PubMed]
- Bedell, G.; Coster, W.; Law, M.; Liljenquist, K.; Kao, Y.C.; Teplicky, R.; Anaby, D.; Khetani, M.A. Community participation, supports, and barriers of school-age children with and without disabilities. Arch. Phys. Med. Rehabil. 2013, 94, 315–323. [Google Scholar] [CrossRef] [PubMed]
- Law, M.; Anaby, D.; Teplicky, R.; Khetani, M.A.; Coster, W.; Bedell, G. Participation in the home environment among children and youth with and without disabilities. Br. J. Occup. Ther. 2013, 76, 58–66. [Google Scholar] [CrossRef]
- Coster, W.; Law, M.; Bedell, G.; Liljenquist, K.; Kao, Y.C.; Khetani, M.; Teplicky, R. School participation, supports and barriers of students with and without disabilities. Child Care Health Dev. 2013, 39, 535–543. [Google Scholar] [CrossRef]
- Anaby, D.; Hand, C.; Bradley, L.; Direzze, B.; Forhan, M.; Digiacomo, A.; Law, M. The effect of the environment on participation of children and youth with disabilities: A scoping review. Disabil. Rehabil. 2013, 35, 1589–1598. [Google Scholar] [CrossRef]
- United Nations. Convention on the Right of the Child; United Nations: Geneva, Switzerland, 1989. [Google Scholar]
- Brewer, K.; Pollock, N.; Wright, F.V. Addressing the challenges of collaborative goal setting with children and their families. Phys. Occup. Ther. Pediatr. 2014, 34, 138–152. [Google Scholar] [CrossRef]
- Coyne, I.; Hallström, I.; Söderbäck, M. Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. J. Child Health Care 2016, 20, 494–502. [Google Scholar] [CrossRef] [PubMed]
- Eriksson, L.; Granlund, M. Conceptions of participation in students with disabilities and persons in their close environment. J. Dev. Phys. Disabil. 2004, 16, 229–245. [Google Scholar] [CrossRef]
- Missiuna, C.; Pollock, N. Perceived efficacy and goal setting in young children. Can. J. Occup. Ther. 2000, 67, 101–109. [Google Scholar] [CrossRef] [PubMed]
- Coyne, I.; Gallagher, P. Participation in communication and decision-making: Children and young people’s experiences in a hospital setting. J. Clin. Nurs. 2011, 20, 2334–2343. [Google Scholar] [CrossRef] [PubMed]
- Wehmeyer, M. Self-determination as an educational outcome: A definitional framework and implications for intervention. J. Dev.Phys. Disabil. 1997, 9, 175–209. [Google Scholar] [CrossRef]
- Nilsson, S.; Bjorkman, B.; Almqvist, A.L.; Almqvist, L.; Bjork-Willen, P.; Donohue, D.; Enskar, K.; Granlund, M.; Huus, K.; Hvit, S. Children’s voices-differentiating a child perspective from a child’s perspective. Dev. Neurorehabil. 2015, 18, 162–168. [Google Scholar] [CrossRef] [PubMed]
- Liao, Y.T.; Hwang, A.W.; Liao, H.F.; Kang, L.J. Do we hear the child’s voice? Using measures of participation to identify needs for participation of elementary school students with special needs: A case report. Formosa J. Phys. Ther. 2017, 42, 228–233. [Google Scholar]
- Imms, C.; Adair, B.; Keen, D.; Ullenhag, A.; Rosenbaum, P.; Granlund, M. ‘Participation’: A systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev. Med. Child Neurol. 2016, 58, 29–38. [Google Scholar] [CrossRef] [PubMed]
- Imms, C.; Granlund, M.; Wilson, P.H.; Steenbergen, B.; Rosenbaum, P.L.; Gordon, A.M. Participation, both a means and an end: A conceptual analysis of processes and outcomes in childhood disability. Dev. Med. Child Neurol. 2017, 59, 16–25. [Google Scholar] [CrossRef]
- Liao, H.F.; Hwang, A.W.; Kang, L.J.; Liao, Y.T.; Granlund, M.; Simeonsson, R.J. The development of the fundes-child and its implications for the education of taiwanese children. In An Emerging Approach for Education and Care: Implementing a Worldwide Classification of Functioning and Disability; Castro, S., Palikara, O., Eds.; Routledge: London, UK, 2018; pp. 85–111. [Google Scholar]
- Büğüşan, S.; Kahraman, A.; Elbasan, B.; Mutlu, A. Do adolescents with cerebral palsy agree with their caregivers on their participation and quality of life? Disabil. Health J. 2018, 11, 287–292. [Google Scholar] [CrossRef]
- Costa, U.M.; Brauchle, G.; Kennedy-Behr, A. Collaborative goal setting with and for children as part of therapeutic intervention. Disabil. Rehabil. 2017, 39, 1589–1600. [Google Scholar] [CrossRef] [PubMed]
- Adair, B.; Ullenhag, A.; Rosenbaum, P.; Granlund, M.; Keen, D.; Imms, C. Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: A systematic review. Dev. Med. Child Neurol. 2018, 60, 1101–1116. [Google Scholar] [CrossRef] [PubMed]
- Imms, C.; Granlund, M.; Bornman, J.; Elliott, C. Picture My Participation, Research Version 1.0; 2014. Available online: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.12778_58 (accessed on 22 June 2019).
- Arvidsson, P.; Dada, S.; Granlund, M.; Imms, C.; Bornman, J.; Elliot, C.; Huus, K. Content validity and utility of picture my participation for measuring participation in children with intellectual disability in south africa and sweden. submitted.
- Cameron, L.; Murphy, J. Enabling young people with a learning disability to make choices at a time of transition. Br. J. Learn. Disabil. 2002, 30, 105–112. [Google Scholar] [CrossRef]
- Bornman, J.; Murphy, J. Using the ICF in goal setting: Clinical application using talking mats. Disabil. Rehabil. Assist. Technol. 2006, 1, 145–154. [Google Scholar] [CrossRef] [PubMed]
- Mayer-Johnson. Boardmaker [Computer Software]; Mayer-Johnson: Solana Beach, CA, USA, 2009. [Google Scholar]
- Beaton, D.E.; Bombardier, C.; Guillemin, F.; Ferraz, M.B. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine 2000, 25, 3186–3191. [Google Scholar] [CrossRef] [PubMed]
- Liao, Y.T.; Kang, L.J.; Hwang, A.W.; Grandlund, M. Applying picture my participation to support collaborative goals setting for children with special needs: A pilot study. In Proceedings of the P3M Symposium 2017, Melbourne, Australia, 30–31 October 2017. [Google Scholar]
- Kuo, C.C.; Kang, L.J.; Hwang, A.W.; Fu, C.P.; Chen, H.J.; Li, Y.C. Development of the picture my participation-chinese version: Cross-cultural adaptation for school age children in taiwan. J. Taiwan Occup. Ther. Res. Pract. in press.
- Stevelink, S.A.; van Brakel, W.H. The cross-cultural equivalence of participation instruments: A systematic review. Disabil. Rehabil. 2013, 35, 1256–1268. [Google Scholar] [CrossRef]
- Upton, P.; Lawford, J.; Eiser, C. Parent-child agreement across child health-related quality of life instruments: A review of the literature. Qual. Life Res. 2008, 17, 895–913. [Google Scholar] [CrossRef]
- Theunissen, N.C.; Vogels, T.G.; Koopman, H.M.; Verrips, G.H.; Zwinderman, K.A.; Verloove-Vanhorick, S.P.; Wit, J.M. The proxy problem: Child report versus parent report in health-related quality of life research. Qual. Life Res. 1998, 7, 387–397. [Google Scholar] [CrossRef]
- Egilson, S.T.; Olafsdottir, L.B.; Leosdottir, T.; Saemundsen, E. Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports. Autism 2017, 21, 133–141. [Google Scholar] [CrossRef] [PubMed]
- Moore, L.; Kirk, S. A literature review of children’s and young people’s participation in decisions relating to health care. J. Clin. Nurs. 2010, 19, 2215–2225. [Google Scholar] [CrossRef] [PubMed]
Variables | n | % |
---|---|---|
Child’s age | ||
8 years | 2 | 7 |
9 years | 5 | 17 |
10 years | 9 | 30 |
11 years | 6 | 20 |
12 years | 8 | 27 |
Having a disability certificate | ||
Yes, with a mild degree of severity | 13 | 43 |
Yes, with a moderate degree of severity | 4 | 13 |
Yes, with a severe degree of severity | 1 | 3 |
No a | 12 | 40 |
Educational placement | ||
Decentralized resource classes | 27 | 90 |
Centralized special class | 3 | 10 |
Health conditions b | ||
Autism Spectrum Disorder | 14 | 47 |
Learning disability | 8 | 27 |
Developmental delay | 6 | 20 |
Emotional disability | 6 | 20 |
Intellectual disability | 5 | 17 |
Attention Deficit Hyperactivity Disorder | 5 | 17 |
Speech & Language Impairment | 2 | 7 |
Variables | n | % |
---|---|---|
Relationship to the child | ||
mothers | 23 | 82 |
fathers | 4 | 14 |
grandmother | 1 | 4 |
Age (years) | ||
30–39 | 10 | 36 |
40–49 | 14 | 50 |
>50 | 4 | 14 |
Nationality (domicile of origin) | ||
Taiwan | 24 | 86 |
Vietnam | 3 | 11 |
China | 1 | 4 |
Educational background | ||
Illiterate | 1 | 4 |
Elementary school | 2 | 7 |
Junior | 3 | 11 |
High school | 7 | 25 |
Junior college | 4 | 14 |
University | 11 | 39 |
Family annual income c | ||
<300k | 12 | 43 |
300k to 2M | 16 | 57 |
PMP-C | Child | Parent | p Value | ||||
---|---|---|---|---|---|---|---|
25th | Median | 75th | 25th | Median | 75th | ||
Total | 4.49 | 4.65 | 4.86 | 4.55 | 4.80 | 5.01 | 0.040 * |
Home | 4.44 | 4.67 | 5.11 | 4.73 | 5.00 | 5.34 | 0.018 * |
School | 5.00 | 5.50 | 6.00 | 5.00 | 5.25 | 5.5 | 0.079 |
Community | 4.22 | 4.44 | 4.69 | 4.22 | 4.50 | 5.00 | 0.114 |
Number of Activities | Child | Parent |
---|---|---|
Total | 91 (100%) | 80 (100%) |
Home domain | 31 (34%) | 37 (46%) |
School domain | 20 (22%) | 19 (24%) |
Community domain | 40 (44%) | 24 (30%) |
© 2019 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
Share and Cite
Liao, Y.-T.; Hwang, A.-W.; Liao, H.-F.; Granlund, M.; Kang, L.-J. Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study. Int. J. Environ. Res. Public Health 2019, 16, 2217. https://doi.org/10.3390/ijerph16122217
Liao Y-T, Hwang A-W, Liao H-F, Granlund M, Kang L-J. Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study. International Journal of Environmental Research and Public Health. 2019; 16(12):2217. https://doi.org/10.3390/ijerph16122217
Chicago/Turabian StyleLiao, Ya-Tzu, Ai-Wen Hwang, Hua-Fang Liao, Mats Granlund, and Lin-Ju Kang. 2019. "Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study" International Journal of Environmental Research and Public Health 16, no. 12: 2217. https://doi.org/10.3390/ijerph16122217