In research with children with disabilities, improved participation is often regarded as the ultimate goal of a treatment or intervention. This emphasis on participation aligns with the introduction of the ICF-model of the World Health Organization. Here, participation is defined as ‘involvement in a life situation’. However, this definition leads to a variety of interpretations. Professor Christine Imms from the Australian Catholic University in Melbourne is one of the world leading experts on participation research in children with disabilities. She recently published an article about the different definitions and constructs for participation that are used in intervention research with these children. When she visited our lab group last month we were able to pick her brain about the meaning of participation, how we might include it in our project, how we can measure it, and how we can incorporate more important aspects of this complex construct.
Why is participation such an important outcome, what does it mean for individual children?
‘Ultimately, participation is about the life we live, as infants, children, adolescents and adults. Participation describes all the things we want to, have to, or need to do, so as an all-encompassing construct it is, of course, the aspect of a child’s life that we want to impact the most when we offer an intervention – even when that intervention is directed at fitness, or bone structure or brain functioning.’
Which aspects truly relate to participation, and what other constructs are often (wrongly) measured in research focused on participation?
‘In our work, we describe participation as having two essential constructs: attendance and involvement. Attendance is defined as being there, and measured as frequency of attending and/or the range of activities done. Involvement is the experience of participation while attending including elements of persistence, motivation and affect, and it may or may not involve an experience of social connection.
The related constructs that are often measured include activity competence, sense of self (for example self-determination, self-perception) and preferences. Each of these might change as a result of participation, and each might influence future participation, but they are not, in and of themselves, participation.’
What “mistakes” are often made when researchers want to measure participation?
‘In the recent systematic review we undertook, we found that few authors defined what they meant by participation, which is fine if we all hold a clear and consistent understanding of the word. However, the language used to describe participation in research was inconsistent, confirming that we don’t have a single shared view. There was also a disconnect between participation language and the outcome measures chosen in the research. Some authors did measure attendance, and some measured aspects of involvement, but many measured constructs that we think are related to participation but are not, in and of themselves participation. The most common measure chosen within the review of 25 papers that aimed to provide an intervention to promote participation was activity competence – that is performing the task as expected.’
In our project we are predominantly concerned with “activity competence” as a construct related to participation, but we also try to include elements of motivation and self-efficacy which is more related to involvement. Which aspects do you believe to be most important for determining sports participation for children and youth with motor disabilities?
‘In all research you need to consider what your intervention is targeted at, and what you anticipate will change either because it is the primary target of the intervention, or there is a good rationale to suggest secondary effects. So, if your intervention is aimed at improving activity competence in sports, then certainly that should be measured. If the aim is also to improve participation then that can be considered from the two elements – attendance and involvement. Motivation while attending is related to involvement, motivation to attend, is more about preferences. Self-efficacy is one of the aspects of the construct ‘sense-of-self’ and, may also change with improved competence and/or participation, but is not, within the model we describe, participation.’
Taken together, when a project is aimed at improving participation of children with disabilities, researchers should be clear on which constructs they directly intervene, and what can be considered as more secondary outcomes. This consideration should be translated to the actual measures used. Elements related to participation are not less important, but cannot be directly interpreted as participation itself. We will use these new insights in the designs of our upcoming studies and to discuss if and how we can directly include measures of participation.
With many thanks to:
Professor of Occupational Therapy;
Director of Centre for Disability and Development Research
Australian Catholic University
References to the papers being referred to:
- 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. Developmental Medicine & Child Neurology. 2015. DOI: 10.1111/dmcn.12932
- Adair B, Ullenhag A, Keen D, Granlund M, Imms C. The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review. Dev Med Child Neurol. 2015. DOI: 10.1111/dmcn.12809