Australian Occupational Therapy Journal (2014) 61, 291–292
doi: 10.1111/1440-1630.12166
Editorial
Participation: Are we there yet. . . Involvement in life situations, that is participation, can be seen as a positive expression of health and has been a recurring theme in policy documents, for example the Convention of Children’s Rights (UN General Assembly, 1989), and laws and regulations in different countries. This focus on participation is also very visible in the International Classification of Functioning, Disability and Health (ICF; World Health Organisation, 2001). In the 13 years since the ICF was published, the model of functioning and disability has been almost universally taken up by health care researchers. The early and unique value of the ICF was in its focus on peoples’ involvement in everyday life using a multi-dimensional model that described a dynamic relationship between a health condition, body structure, body function, activity and participation and also acknowledged the impact of environmental and personal factors on an individual’s participation. For occupational therapists, the ICF model provides an interdisciplinary language that is readily assimilated because our professional theoretical models are also typically founded on ecological (person-environment-occupation) frameworks aimed at supporting peoples’ participation in everyday life situations. One of the long-standing criticisms of the ICF, however, relates to the lack of distinction between activity and participation (Dijkers, 2010). Although both terms are defined and illustrated in the conceptual model the classification system does not distinguish between them. The ICF manual provides four possible methods to classify activity and participation, but providing varying approaches introduces considerable room for misinterpretation and miss-communication. Development of measurement tools and intervention strategies that capture the construct of participation are hampered in the absence of a clear, distinct and agreed definition. Participation measures developed following publication of the ICF commonly focused on measuring the frequency of attendance at a range of activities deemed appropriate or necessary. Often these tools also captured the degree of support required to attend, or achieve an activity outcome, which confounds a participation intervention with the outcome. More recently measurement has sought to capture both attendance (being there) and engagement (involvement in the task while there). This second element of the construct, engagement, is critical as it speaks to the accommoda-
© 2014 Occupational Therapy Australia
tions that may be required to enable an individual to take part beyond simply attending. The fully engaged individual will experience a level of acceptance of, and by, others and is the ultimate in participation outcomes. Measures of participation are, however, always contextualised, thus measures of participation do need to be combined with measuring environmental prerequisites for participation. Attendance is strongly influenced by the availability, affordability and accessibility of appropriate and necessary activities. Each of these aspects can be advocated for at policy and service levels (Maxwell, Alves & Granlund, 2012). Engagement however requires accommodation and acceptance by others and cannot be legislated but must be negotiated with and between individuals. Kramer, Olsen, Mermelstein, Balcells and Liljenquist (2012) meta-synthesis of youth with disability articulated the distinctions between levels of participation in their model in which youth described full participation as doing what “everyone else is doing” because modifications and accommodations have enabled their participation. This level of engagement contrasted to the participants descriptions of being engaged in “fringe participation;” or “watching and waiting;” or worse still “doing something different”. Being there and, in some instances engagement, have been assessed with measurement tools newly developed or under construction (for example, Coster et al., 2011). When combined with measures of environmental prerequisites the generated information provides examples of a lack of available, accessible venues for those with significant impairments and the importance of attitudes for those requiring additional support to engage (Colver et al., 2012; Davey, 2012). These environmental barriers restrict our community in two ways. First they prohibit attendance of disabled people in a range of community activities and second because these individuals are not there, they restrict the development of accommodations and acceptances that would enhance engagement of all. In Australia, studies have shown that young people with cerebral palsy aspire to full satisfying lives including participation in education, employment, leisure and domestic life (Cussen, Howie & Imms, 2012), and that unfortunately, young adults with cerebral palsy do not achieve these life-goal outcomes commensurate with their peers (Reddihough et al., 2013). Optimal, positive participation is both a process and outcome desired by those at disadvantage and their social circles as well as by professionals spanning edu-
292
EDITORIAL
cation, health and human service sectors and policy makers. This generation of youth with disability may well be strong advocates of their own ambitions and we will need to meet them with a readiness to advance universal design and to listen, learn and adapt ourselves as they articulate their perspectives. The challenge for the next decade is to collect evidence for meaningful and efficient participation interventions that improve participation both in terms of being there and engagement when there. Christine Imms1 & Mats Granlund2 Professor of Occupational Therapy, Australian Catholic University, Australia, 2 Professor of Psychology, Jonkoping University, Sweden E-mail: [email protected]
1
References Colver, A., Thyen, U., Arnaud, C., Beckung, E., Fauconnier, J., Marcelli, M. et al. (2012). Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: A cross-sectional multicenter European study. Archives of Physical Medicine and Rehabilitation, 93, 2154– 2164. Coster, W., Bedell, G., Law, M., Khetani, M., Teplicky, R., Liljenquist, K. et al. (2011). Psychometric evaluation of
© 2014 Occupational Therapy Australia
the participation and environment measure for children and youth. Developmental Medicine and Child Neurology, 53, 1030–1037. doi: 10.1111/j.1469-8749.2011.04094 Cussen, A., Howie, L. & Imms, C. (2012). Looking to the future: Adolescents with cerebral palsy talk about their aspirations - a narrative study. Disability and Rehabilitation, 34, 2103–2110. Davey, H. (2012). Social participation in families who have a severely physically disabled child: Parents’ perspectives. Master of Occupational Therapy, La Trobe University, Melbourne, Australia. Dijkers, M. P. (2010). Issues in the conceptualization and measurement of participation: An overview. Archives of Physical Medicine and Rehabilitation, 91 (9 Suppl), S5–S16. Kramer, J. M., Olsen, S., Mermelstein, M., Balcells, A. & Liljenquist, K. (2012). Youth with disabilities’ perspectives of the environment and participation: A qualitative metasynthesis. Child: Care, Health and Development, 38, 763–777. Maxwell, G., Alves, I. & Granlund, M. (2012). Participation and environmental aspects in education and the ICF and the ICF-CY: Findings from a systematic literature review. Developmental Neurorehabilitation, 15, 63–78. Reddihough, D. S., Jiang, B., Lanigan, A., Reid, S. M., Walstab, J. E. & Davis, E. (2013). Social outcomes of young adults with cerebral palsy. Journal of Intellectual Developmental Disability, 38, 215–222. UN General Assembly. (1989). Convention on the rights of the child. Treaty Series, 1577, 3. World Health Organisation. (2001). International classification of functioning, disability and health. Geneva: WHO.
doi: 10.1111/1440-1630.12166
Editorial
Participation: Are we there yet. . . Involvement in life situations, that is participation, can be seen as a positive expression of health and has been a recurring theme in policy documents, for example the Convention of Children’s Rights (UN General Assembly, 1989), and laws and regulations in different countries. This focus on participation is also very visible in the International Classification of Functioning, Disability and Health (ICF; World Health Organisation, 2001). In the 13 years since the ICF was published, the model of functioning and disability has been almost universally taken up by health care researchers. The early and unique value of the ICF was in its focus on peoples’ involvement in everyday life using a multi-dimensional model that described a dynamic relationship between a health condition, body structure, body function, activity and participation and also acknowledged the impact of environmental and personal factors on an individual’s participation. For occupational therapists, the ICF model provides an interdisciplinary language that is readily assimilated because our professional theoretical models are also typically founded on ecological (person-environment-occupation) frameworks aimed at supporting peoples’ participation in everyday life situations. One of the long-standing criticisms of the ICF, however, relates to the lack of distinction between activity and participation (Dijkers, 2010). Although both terms are defined and illustrated in the conceptual model the classification system does not distinguish between them. The ICF manual provides four possible methods to classify activity and participation, but providing varying approaches introduces considerable room for misinterpretation and miss-communication. Development of measurement tools and intervention strategies that capture the construct of participation are hampered in the absence of a clear, distinct and agreed definition. Participation measures developed following publication of the ICF commonly focused on measuring the frequency of attendance at a range of activities deemed appropriate or necessary. Often these tools also captured the degree of support required to attend, or achieve an activity outcome, which confounds a participation intervention with the outcome. More recently measurement has sought to capture both attendance (being there) and engagement (involvement in the task while there). This second element of the construct, engagement, is critical as it speaks to the accommoda-
© 2014 Occupational Therapy Australia
tions that may be required to enable an individual to take part beyond simply attending. The fully engaged individual will experience a level of acceptance of, and by, others and is the ultimate in participation outcomes. Measures of participation are, however, always contextualised, thus measures of participation do need to be combined with measuring environmental prerequisites for participation. Attendance is strongly influenced by the availability, affordability and accessibility of appropriate and necessary activities. Each of these aspects can be advocated for at policy and service levels (Maxwell, Alves & Granlund, 2012). Engagement however requires accommodation and acceptance by others and cannot be legislated but must be negotiated with and between individuals. Kramer, Olsen, Mermelstein, Balcells and Liljenquist (2012) meta-synthesis of youth with disability articulated the distinctions between levels of participation in their model in which youth described full participation as doing what “everyone else is doing” because modifications and accommodations have enabled their participation. This level of engagement contrasted to the participants descriptions of being engaged in “fringe participation;” or “watching and waiting;” or worse still “doing something different”. Being there and, in some instances engagement, have been assessed with measurement tools newly developed or under construction (for example, Coster et al., 2011). When combined with measures of environmental prerequisites the generated information provides examples of a lack of available, accessible venues for those with significant impairments and the importance of attitudes for those requiring additional support to engage (Colver et al., 2012; Davey, 2012). These environmental barriers restrict our community in two ways. First they prohibit attendance of disabled people in a range of community activities and second because these individuals are not there, they restrict the development of accommodations and acceptances that would enhance engagement of all. In Australia, studies have shown that young people with cerebral palsy aspire to full satisfying lives including participation in education, employment, leisure and domestic life (Cussen, Howie & Imms, 2012), and that unfortunately, young adults with cerebral palsy do not achieve these life-goal outcomes commensurate with their peers (Reddihough et al., 2013). Optimal, positive participation is both a process and outcome desired by those at disadvantage and their social circles as well as by professionals spanning edu-
292
EDITORIAL
cation, health and human service sectors and policy makers. This generation of youth with disability may well be strong advocates of their own ambitions and we will need to meet them with a readiness to advance universal design and to listen, learn and adapt ourselves as they articulate their perspectives. The challenge for the next decade is to collect evidence for meaningful and efficient participation interventions that improve participation both in terms of being there and engagement when there. Christine Imms1 & Mats Granlund2 Professor of Occupational Therapy, Australian Catholic University, Australia, 2 Professor of Psychology, Jonkoping University, Sweden E-mail: [email protected]
1
References Colver, A., Thyen, U., Arnaud, C., Beckung, E., Fauconnier, J., Marcelli, M. et al. (2012). Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: A cross-sectional multicenter European study. Archives of Physical Medicine and Rehabilitation, 93, 2154– 2164. Coster, W., Bedell, G., Law, M., Khetani, M., Teplicky, R., Liljenquist, K. et al. (2011). Psychometric evaluation of
© 2014 Occupational Therapy Australia
the participation and environment measure for children and youth. Developmental Medicine and Child Neurology, 53, 1030–1037. doi: 10.1111/j.1469-8749.2011.04094 Cussen, A., Howie, L. & Imms, C. (2012). Looking to the future: Adolescents with cerebral palsy talk about their aspirations - a narrative study. Disability and Rehabilitation, 34, 2103–2110. Davey, H. (2012). Social participation in families who have a severely physically disabled child: Parents’ perspectives. Master of Occupational Therapy, La Trobe University, Melbourne, Australia. Dijkers, M. P. (2010). Issues in the conceptualization and measurement of participation: An overview. Archives of Physical Medicine and Rehabilitation, 91 (9 Suppl), S5–S16. Kramer, J. M., Olsen, S., Mermelstein, M., Balcells, A. & Liljenquist, K. (2012). Youth with disabilities’ perspectives of the environment and participation: A qualitative metasynthesis. Child: Care, Health and Development, 38, 763–777. Maxwell, G., Alves, I. & Granlund, M. (2012). Participation and environmental aspects in education and the ICF and the ICF-CY: Findings from a systematic literature review. Developmental Neurorehabilitation, 15, 63–78. Reddihough, D. S., Jiang, B., Lanigan, A., Reid, S. M., Walstab, J. E. & Davis, E. (2013). Social outcomes of young adults with cerebral palsy. Journal of Intellectual Developmental Disability, 38, 215–222. UN General Assembly. (1989). Convention on the rights of the child. Treaty Series, 1577, 3. World Health Organisation. (2001). International classification of functioning, disability and health. Geneva: WHO.
