The World Health Organisation’s (WHO) International Classification of Impairment, Disability and Health (ICF)) defines ‘participation’ as ‘involvement in a life situation’. However, when people started to study participation, we found there were many ways that people thought about it. There was no agreement or clarity, about what participation was.

Our research involved a series of systematic reviews of research and theory on childhood disability. From this work we created a framework called the ‘family of Participation Related Constructs (fPRC)’.

In the fPRC, participation is defined as having two essential elements: attendance and involvement.

• Attendance is defined as ‘being there’ – being able to be physically (or virtually) present in a situation or activity.
• Involvement is defined as the experience of participation while attending.

Because participation always happens in a context or activity setting, the fPRC also describes how attendance and involvement are influenced by aspects within the individual (activity competence, sense-of-self and preferences) and aspects external to the individual (the environment and the context in which participation is happening). The fPRC says all these ideas about participation work together to make participation a good experience or not.

For us to work together to improve the lived experience of participation by people with childhood-onset disability, we have to understand what influences participation and then carefully consider how best to make changes.

You might also want to watch our Doodly cartoon, called ‘Let’s Talk About Participation’, linked below in associated resources.

The figure below encapsulates the fPRC.

Figure: The family of participation-related constructs. Panel A displays the person-focused processes and Panel B displays the environment-focused processes. From: Imms, C., Granlund, M., Wilson, P.H., Steenbergen, B., Rosenbaum, P., & Gordon, A. (2016). Participation – both a means and an end. A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine & Child Neurology, 59(1), 16-25. DOI: 10.1111/dmcn.13237

The international team that developed the fPRC have published several papers that explain it. Two key ones are:

• A systematic review and analysis of language and measures used in intervention research to discuss and describe participation (Imms et al 2016)*. This systematic review of language resulted in an early form of the fPRC described as ‘participation, and participation related constructs’.
• A conceptual review of health and psychological literature exploring the extent to which there was evidence in support of the preliminary framework (Imms et al 2017)*.

The outcome of this conceptual review was the current version of the fPRC. Both the systematic review of language (2016) and the conceptual review (2017) have been frequently cited since publication. Professor Christine Imms presented on this research at the Participation Inclusion in Action Conference (PIAC) 2024 held in Singapore.

Access the video recording of the presentation through this link :

PIAC 2024 Presentation on Participation (used with permission from PIAC).

Given 7-8 years of use, it is timely to explore what can be learned from how the fPRC has been used in the literature.

We are currently working on a citation mapping study which aims to identify where, how, by whom and for what purpose the fPRC has been used since it was published. We want to know how widely it has been taken up, and if it is useful to researchers and practitioners.

*Plain language resource for these journal articles are linked below in ‘Associated Resources’.