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Children with Disabilities and Environmental Factors

Presentation at the 60th Anniversary of the Hong Kong Physiotherapy Association conference "Glocalisation of WHO's ICF in Clinical Practice: Worldwide Experience Sharing" https://www.icf-conf2023hk.com

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Children with Disabilities and
Environmental Factors
Use of the International Classification of Functioning, Disability and Health (ICF)
Olaf Kraus de Camargo
Hong Kong, 03 December 2023
Proposition
§ Social Paediatrics/Developmental Paediatrics: “is an approach to child
health that focuses on the child, in illness and in health, within the context
of their society, environment, school, and family.” (Spencer et al., 2005)
§ ICF – International Classification of Functioning, Disability and Health
offers the framework to describe the interactions of a person and their
contextual (incl. environmental) factors
§ Children experiencing disabilities are prototypic examples of the
importance of addressing those contextual factors to improve their
participation
§ We have tools to document and measure the impact of environmental
factors on participation
§ An adoption of the ICF in clinical practice can provide the data for public
health initiatives – “only what is counted counts”
Spencer, N., Colomer, C., Alperstein, G., Bouvier, P., Colomer, J., Duperrex, O., Gokcay, G., Julien, G., Kohler, L.,
Lindstrom, B., Macfarlane, A., Mercer, R., Panagiotopoulos, T., & Schulpen, T. (2005). Social paediatrics. J Epidemiol
Community Health, 59(2), 106-108. https://doi.org/10.1136/jech.2003.017681
Environmental Factors
§ Barriers and Facilitators:
§ Products and technology: assistive devices, medication, food
§ Physical: natural (landscape, climate) and built environment (streets, buildings)
§ Social: access to services, supports, healthcare, education
§ Relationships: family, peers, friends, colleagues
§ Attitudinal: inclusion, acceptance, segregation, discrimination, bullying
Environmental factors: The physical, social and attitudinal environment in which people live and conduct
their lives; these are either barriers to or facilitators of the person’s functioning
Assistive Technology
Livingstone, R. W., Chin, A. J., & Paleg, G.
S. (2023). Power Mobility, Supported
Standing and Stepping Device Use in the
First Two Years of Life: A Case Report of
Twins Functioning at GMFCS V.
Disabilities, 3(4), 507-524.
https://doi.org/10.3390/disabilities304003
Facilitators:
• Wheelchairs
• Standing devices
• Communication Technology
Barriers:
• Curbs
• Doors
• Stairs
Systems
“He was forgotten for two years. All of his therapies
ended. There was no education, he couldn’t do online,
so there was no education, there was no interaction,
there was no respite, there was nothing. It was me and
him…. When everybody went back, he had aged out of
certain programs. We lost Speech altogether. Now
we’re waitlisted to get school-based language support.
Speech was his number one priority of all his therapies,
and we lost all—and during ages of seven, eight, nine,
there was so much that he needed and that’s when we
lost everything. It was terrible…He fell through the
cracks.”
(‘Kora’, mother of two)
Systems
“I like really found myself I’d say through Covid
because it gave me a lot of time to figure myself
out and figure my abilities out and figure my
interests out, so if Covid didn’t happen I don’t know
if this would have happened, I really don’t know.
Because in in-person class I wasn’t the best, and
then online class happened, and I really had more
time to focus on these things and it really helped.”
(‘Michelle’, 12 years old)
“The picture is my screensaver on my iPad. I’m in love with math
and science so it’s STEM… and those are some famous women in
math who started paving the way. The bottom picture is fidgeting
because that really helps me have control during the day”

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Children with Disabilities and Environmental Factors

  • 1. Children with Disabilities and Environmental Factors Use of the International Classification of Functioning, Disability and Health (ICF) Olaf Kraus de Camargo Hong Kong, 03 December 2023
  • 2. Proposition § Social Paediatrics/Developmental Paediatrics: “is an approach to child health that focuses on the child, in illness and in health, within the context of their society, environment, school, and family.” (Spencer et al., 2005) § ICF – International Classification of Functioning, Disability and Health offers the framework to describe the interactions of a person and their contextual (incl. environmental) factors § Children experiencing disabilities are prototypic examples of the importance of addressing those contextual factors to improve their participation § We have tools to document and measure the impact of environmental factors on participation § An adoption of the ICF in clinical practice can provide the data for public health initiatives – “only what is counted counts” Spencer, N., Colomer, C., Alperstein, G., Bouvier, P., Colomer, J., Duperrex, O., Gokcay, G., Julien, G., Kohler, L., Lindstrom, B., Macfarlane, A., Mercer, R., Panagiotopoulos, T., & Schulpen, T. (2005). Social paediatrics. J Epidemiol Community Health, 59(2), 106-108. https://doi.org/10.1136/jech.2003.017681
  • 3. Environmental Factors § Barriers and Facilitators: § Products and technology: assistive devices, medication, food § Physical: natural (landscape, climate) and built environment (streets, buildings) § Social: access to services, supports, healthcare, education § Relationships: family, peers, friends, colleagues § Attitudinal: inclusion, acceptance, segregation, discrimination, bullying Environmental factors: The physical, social and attitudinal environment in which people live and conduct their lives; these are either barriers to or facilitators of the person’s functioning
  • 4. Assistive Technology Livingstone, R. W., Chin, A. J., & Paleg, G. S. (2023). Power Mobility, Supported Standing and Stepping Device Use in the First Two Years of Life: A Case Report of Twins Functioning at GMFCS V. Disabilities, 3(4), 507-524. https://doi.org/10.3390/disabilities304003 Facilitators: • Wheelchairs • Standing devices • Communication Technology Barriers: • Curbs • Doors • Stairs
  • 5. Systems “He was forgotten for two years. All of his therapies ended. There was no education, he couldn’t do online, so there was no education, there was no interaction, there was no respite, there was nothing. It was me and him…. When everybody went back, he had aged out of certain programs. We lost Speech altogether. Now we’re waitlisted to get school-based language support. Speech was his number one priority of all his therapies, and we lost all—and during ages of seven, eight, nine, there was so much that he needed and that’s when we lost everything. It was terrible…He fell through the cracks.” (‘Kora’, mother of two)
  • 6. Systems “I like really found myself I’d say through Covid because it gave me a lot of time to figure myself out and figure my abilities out and figure my interests out, so if Covid didn’t happen I don’t know if this would have happened, I really don’t know. Because in in-person class I wasn’t the best, and then online class happened, and I really had more time to focus on these things and it really helped.” (‘Michelle’, 12 years old) “The picture is my screensaver on my iPad. I’m in love with math and science so it’s STEM… and those are some famous women in math who started paving the way. The bottom picture is fidgeting because that really helps me have control during the day”
  • 7. Environment & Development Hwang, A. W., Liao, H. F., Granlund, M., Simeonsson, R. J., Kang, L. J., & Pan, Y. L. (2014). Linkage of ICF-CY codes with environmental factors in studies of developmental outcomes of infants and toddlers with or at risk for motor delays. Disabil Rehabil, 36(2), 89-104. https://doi.org/10.3109/09638288.2013.777805 “When home environment and birth weight were both considered as the predictors of general development under the ICF-CY based model, home environment could explain 59%... of the variance of infant outcomes, whereas birth weight did not.”
  • 8. Guidelines Kleineke, V. E., Menzel-Begemann, A., Wild, B., & Meyer, T. (2016). [Environmental factors and the promotion of participation. The Perspective of medical rehabilitation]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz, 59(9), 1139-1146. https://doi.org/10.1007/s00103-016- 2405-9 (Umweltfaktoren und Teilhabeförderung. Die Perspektive der medizinischen Rehabilitation.) Only a small portion of environmental factors relevant for everyday activities are being considered in a number of rehabilitation guidelines and ICF core- sets for adults.
  • 9. Measures & Tools § Participation and Environment Measure (PEM) § Versions for Children andYouth,Young Children andYouth,Young Adults § CHIEF-CP – Craig Hospital Inventory of Environmental Factors modified for Children with Cerebral Palsy and other neurodevelopmental disabilities
  • 10. PEM Suite Khetani, M. A. (2015). Validation of environmental content in the Young Children's Participation and Environment Measure. Arch Phys Med Rehabil, 96(2), 317-322. https://doi.org/10.1016/j.apmr.2014.11.016 e215, e225, e240, e255, e260
  • 11. PEM Suite e425, e430 Khetani, M. A. (2015). Validation of environmental content in the Young Children's Participation and Environment Measure. Arch Phys Med Rehabil, 96(2), 317-322. https://doi.org/10.1016/j.apmr.2014.11.016
  • 12. PEM Suite e225, e2250 Khetani, M. A. (2015). Validation of environmental content in the Young Children's Participation and Environment Measure. Arch Phys Med Rehabil, 96(2), 317-322. https://doi.org/10.1016/j.apmr.2014.11.016
  • 13. CHIEF-CP McCauley, D., Gorter, J., Russell, D., Rosenbaum, P., Law, M., & Kertoy, M. (2013). Assessment of environmental factors in disabled children 2– 12 years: development and reliability of the Craig Hospital Inventory of Environmental Factors (CHIEF) for Children–Parent Version. Child: Care, Health and Development, 39(3), 337-344. e210, e225 e5350 e580 e360
  • 14. Disability Evaluation System Hwang, A. W., Yen, C. F., Liou, T. H., Bedell, G., Granlund, M., Teng, S. W., Chang, K. H., Chi, W. C., & Liao, H. F. (2015). Development and validation of the ICF-CY-Based Functioning Scale of the Disability Evaluation System--Child Version in Taiwan. J Formos Med Assoc, 114(12), 1170-1180. https://doi.org/10.1016/j.jfma.2015.11.002
  • 15. Disability Evaluation System Hwang, A. W., Yen, C. F., Liou, T. H., Bedell, G., Granlund, M., Teng, S. W., Chang, K. H., Chi, W. C., & Liao, H. F. (2015). Development and validation of the ICF-CY-Based Functioning Scale of the Disability Evaluation System--Child Version in Taiwan. J Formos Med Assoc, 114(12), 1170-1180. https://doi.org/10.1016/j.jfma.2015.11.002
  • 16. Person – Environment Facilitator:Wheelchair Barrier: lack of pavement Activity & Participation: getting to school DALL-E2
  • 17. Person – Environment Facilitator: Wheelchair, puddle Barrier: none Activity & Participation: being active outdoors and have fun DALL-E2
  • 18. Environment Good intentions are not enough! Kraus de Camargo Kraus de Camargo
  • 19. Functioning is Personal § Any assessment of Functioning needs to consider the whole ICF framework Health Issue BS&F Activity Partn Environt Personal Person Context Functioning/Disability
  • 20. The voices of children § United Nations' Convention on the Rights of Persons with Disabilities (2006): “Children with disabilities have the right to express their views freely on all matters affecting them.” (Art. 7) § Strategy for Patient Oriented Research:“Patients need to be involved in all aspects of research to ensure questions and results are relevant” § World Health Organization:“ICF respects the rights of every person and actively avoids labelling, stigmatisation and discrimination.” § United Nations Convention on the Rights of the Child: “…the right to have their views given due weight in all matters affecting them.” (Art 12)
  • 21. Ethical considerations § Functioning assessment § Collaborative Child rights-based framework (UNCRPD) § Time and Context specific changeable § Documentation & Statistics § Patients/caregivers need access to update their health record § Electronic health records need to be interoperable across providers and services (currently in Ontario exist over 300 EMR providers according to www.getapp.ca) § Health Statistics need to include data about Functioning
  • 22. Ideas to spread: § “Functioning is the third health indicator besides mortality and morbidity” (Bickenbach et al. 2023) § Assessment of Functioning is collaborative § Assessment of Functioning requires assessing the environment § We have the tools for these assessments and the ICF provides a universal language for documentation and health statistics § Only what is counted counts! Bickenbach, J., Rubinelli, S., Baffone, C., & Stucki, G. (2023). The human functioning revolution: implications for health systems and sciences. Frontiers in Science, 1. https://doi.org/10.3389/fsci.2023.1118512 “No data, No problem, No action” (Alfredo Solari)
  • 23. canchild.ca @canchild_ca 905.525.9140 x27850 facebook.com/canchild.ca canchild@mcmaster.ca Institute for Applied Health Sciences, McMaster University 1400 Main Street W., Room 408 Hamilton, ON, Canada ThankYou!
  • 24. References § Bickenbach, J., Rubinelli, S., Baffone, C., & Stucki, G. (2023). The human functioning revolution: implications for health systems and sciences. Frontiers in Science, 1. https://doi.org/10.3389/fsci.2023.1118512 § Chien, C. W., Rodger, S., Copley, J., & Skorka, K. (2014). Comparative content review of children's participation measures using the International Classification of Functioning, Disability and Health-Children and Youth. Arch Phys Med Rehabil, 95(1), 141-152. https://doi.org/10.1016/j.apmr.2013.06.027 § Coster, W., Bedell, G., Law, M., Khetani, M. A., Teplicky, R., Liljenquist, K., Gleason, K., & Kao, Y. C. (2011). Psychometric evaluation of the Participation and Environment Measure for Children and Youth [Research Support, U.S. Gov't, Non-P.H.S.]. Dev Med Child Neurol, 53(11), 1030-1037. https://doi.org/10.1111/j.1469-8749.2011.04094.x § Hwang, A. W., Liao, H. F., Granlund, M., Simeonsson, R. J., Kang, L. J., & Pan, Y. L. (2014). Linkage of ICF-CY codes with environmental factors in studies of developmental outcomes of infants and toddlers with or at risk for motor delays. Disabil Rehabil, 36(2), 89-104. https://doi.org/10.3109/09638288.2013.777805 § Hwang, A. W., Yen, C. F., Liou, T. H., Bedell, G., Granlund, M., Teng, S. W., Chang, K. H., Chi, W. C., & Liao, H. F. (2015). Development and validation of the ICF-CY- Based Functioning Scale of the Disability Evaluation System--Child Version in Taiwan. J Formos Med Assoc, 114(12), 1170-1180. https://doi.org/10.1016/j.jfma.2015.11.002 § Kleineke, V. E., Menzel-Begemann, A., Wild, B., & Meyer, T. (2016). [Environmental factors and the promotion of participation. The Perspective of medical rehabilitation]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz, 59(9), 1139-1146. https://doi.org/10.1007/s00103-016- 2405-9 (Umweltfaktoren und Teilhabeforderung. Die Perspektive der medizinischen Rehabilitation.) § Kraus de Camargo, O., Simon, L., Ronen, G. M., & Rosenbaum, P. L. (2019). ICF - A Hands-on Approach for Clinicians and Families. MacKeith Press. § Livingstone, R. W., Chin, A. J., & Paleg, G. S. (2023). Power Mobility, Supported Standing and Stepping Device Use in the First Two Years of Life: A Case Report of Twins Functioning at GMFCS V. Disabilities, 3(4), 507-524. https://doi.org/10.3390/disabilities3040032 § McCauley, D., Gorter, J., Russell, D., Rosenbaum, P., Law, M., & Kertoy, M. (2013). Assessment of environmental factors in disabled children 2–12 years: development and reliability of the Craig Hospital Inventory of Environmental Factors (CHIEF) for Children–Parent Version. Child: Care, Health and Development, 39(3), 337-344. § Spencer, N., Colomer, C., Alperstein, G., Bouvier, P., Colomer, J., Duperrex, O., Gokcay, G., Julien, G., Kohler, L., Lindstrom, B., Macfarlane, A., Mercer, R., Panagiotopoulos, T., & Schulpen, T. (2005). Social paediatrics. J Epidemiol Community Health, 59(2), 106-108. https://doi.org/10.1136/jech.2003.017681 § World Health Organization. (2001). International classification of functioning, disability and health (Vol. 13.9). World Health Organization,. https://apps.who.int/gb/archive/pdf_files/WHA54/ea54r21.pdf