Perspectives on measuring participation: going forward

Authors

  • G. King

    Corresponding author
    1. Bloorview Research Institute, University of Toronto, Toronto, ON, Canada
    • Correspondence:

      Gillian King, Bloorview Research Institute, 150 Kilgour Road, Toronto, Ontario, Canada M4G 1R8

      E-mail: gking27@uwo.ca

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Where is the field of paediatric rehabilitation with respect to developments in the measurement of the participation of children and youth with disabilities in life situations? The aim of this commentary is to provide an overview of perspectives on this issue, touching on the intents of existing measurement approaches, the scope of measurement and the dimensions assessed, populations targeted by the measures and techniques, and how the measurement is done. This commentary therefore considers the why and what, and who and how of participation measurement. Suggestions are made for future opportunities and fruitful directions for measurement in this area.

Broadening perspectives: Why measure and what to measure?

It is important to acknowledge that there are different reasons why we measure participation, which drive measure development. The intent could be to contribute to the understanding of participation, guide clinical intervention, or provide information appropriate for the generation of policy. This range of purposes is displayed in the articles in this special issue, which reflect measurement for clinical purposes (e.g. the outcomes of participation-oriented interventions) and for research and policy intents.

In addition to practical intents of measurement, theoretical or conceptual bases drive what is measured, and how. In this regard, the International Classification of Functioning, Disability, and Health (World Health Organization 2001) has had appreciable impact on the design of measurement tools. Based on the ICF framework, appropriate measurement of participation is considered to require comprehensive coverage of participation across life domains (Morris et al. 2005; Coster et al. 2012); however, we also need ways to examine participation in-depth in specific life situations (e.g. school, home, community), specific domains (e.g. leisure), and particular activity settings (i.e. the places where children/youth ‘do things’). Participation is intimately tied to context (‘participation in what?’) and so measurement of different environmental or social contextual units of analysis is needed to further our understanding of the nature, variability, and consequences of participation involvement and experiences. I feel there is a place for other conceptual approaches, beyond the ICF framework, to guide the measurement of participation, as ‘participation’ is clearly not a global construct or single variable, and can be conceptualized in a variety of ways. One example is a life span developmental model (Lerner 1998), which is tied more to aims of understanding participation–environment–task interactions over time, thus providing a dynamic perspective on participation, influential factors and processes, and arising benefits.

On a more operational level, there are various types of approaches to participation measurement, including those focusing on proxy (typically parent) reports of participation dimensions (such as frequency), and approaches focusing on barriers and supports, subjective experiences, and behavioural observation. Each approach has strengths reflecting its intent and areas of relative weakness. The ‘frequency’ approach examines participation in life domains and is useful for comparative purposes; however, children/youth may have quite different overall experiences despite similarities in their extent of participation. Participation is not solely about the number of activities that a child or youth does or their frequency of involvement; a crucial aspect is the meaningfulness of participation experiences, which requires self-report (Petrenchik & King 2011). The ‘barriers and supports’ approach assesses whether the environment acts as a facilitator or barrier to participation, and focuses to a large degree on entry into a life situation. This approach, exemplified by the Participation and Environment Measure for Children and Youth (PEM-CY) (Coster et al. 2011), is useful in capturing information for policy purposes. The PEM-CY is a parent-completed, proxy measure of perceived supports and barriers to participation. Self-reports of actual experience in a specific context can, however, be quite different from parents' perceptions of supports and barriers. The ‘experiences’ approach (e.g. Granlund et al. 2012; King et al. 2013) captures the dynamic aspect of individual–environment interaction in specific activity settings, including the personal meanings people attach to these specific engagements (Seekins et al. 2007). The ‘experiences’ approach has the benefit of not relying on extended periods of recall and the advantage of measurement specificity, but provides a less global view of a child's participation, as it focuses on experiences of specific activities or activity settings at specific points in time (rather than aggregated ‘counts’ of participation over time). In rehabilitation, there has been a focus on the broader environment and life participation rather than on more specific contexts and experiences (Noreau & Boschen 2010).

Focusing on hard-to-research populations: Who are we missing?

Measurement appears to be at a stage of increasing specificity regarding populations of interest. Measurement is now targeting the participation of preschoolers (Law et al. 2012), as well as youth and their unique life situations (King et al. 2013). The special issue articles reflect this diversity, ranging from studies involving preschoolers to school age children and youth. Measures such as the LIFE-H (Noreau et al. 2007) and Children's Assessment of Participation and Enjoyment (CAPE) (King et al. 2004, 2006) capture the participation of a broad range of children with physical or developmental disabilities. Measurement is now targeting specific types of diagnoses and functioning difficulties, particularly cerebral palsy, and, as seen in this special issue, children with communication difficulties. These are important developments that can help us to understand children's unique and common participation processes, experiences, and outcomes. More measurement work is needed to explore and understand the participation of children and youth with severe disabilities – a very hard to research population in general. Axelsson and colleagues (2013) use a parent-completed questionnaire to examine the participation of children with profound intellectual and multiple disabilities in family activities. Other recent work includes the development of quantitative measures, qualitative methods (photo-elicitation, observations, electronic interviews, and face-to-face interviews), and physiological measures to assess the participation experiences of severely involved youth with complex continuing care needs and/or youth who communicate using augmentative and alternative communication (B. Gibson et al. submitted; King et al. 2013).

Encouraging innovative approaches: How might we proceed?

Participation measures include parent- and child/youth-completed instruments, and those completed by teachers and health care professionals. The vantage point is typically retrospective – that is, looking back at past participation. One noteworthy direction in the literature is the increasing use of approaches to measure a variety of participation dimensions in-the-moment. Researchers are beginning to use ecological momentary assessment (EMA) and personal data assistants to measure participation (e.g. Seekins et al. 2007; Dunton et al. 2012). This method can combine the frequency, barriers and supports, and experiences approaches, as children and youth can report their activity setting or location, the nature of the activity they are engaged in, social contact or the presence of others, and can also provide ratings of environmental barriers and facilitators, and their experiences. Geographical approaches to measurement using travel and activity diaries also hold promise in providing new insights into participation (e.g. Kemperman & Timmermans 2011). Most of this work on experiential and geographical methods emanates from fields other than paediatric rehabilitation. For example, work on typically developing youths' engagement in organized, outside-of-school-time activities has used experience sampling techniques to capture youths' perceptions of engagement, challenge, and importance (Shernoff 2010). Granlund and colleagues' work exemplifies the experiential approach as applied to paediatric rehabilitation (e.g. Maxwell et al. 2012). A key construct in this work is the notion of ‘engagement’.

Another new direction has been the development of methods to assess physiological signals reflecting the activity of the autonomic nervous system (Kushki et al. 2012). Physiological data provide a language-free measure of engagement, and can therefore add insight into children's experiences beyond what is captured verbally or by standardized questionnaires. The Heat ECG Acceleration Respiration Transdermal (HEART) measurement system uses of a set of non-invasive and inexpensive wireless sensors to collect signals, thus providing episodic descriptions of engagement experiences during an activity (B. Gibson et al. submitted). This work is in the early stage. Interpretation of the physiological signals requires consideration of contextual events and data provided by qualitative and quantitative methods.

Other potentially fruitful directions include: examining how children and youth select activity settings or life spaces in the anticipation of particular participation experiences; the examination of ‘lived experiences’, including virtual participation experiences in chat rooms, gaming, and blogs on the Internet (Kramer et al. 2012); and particularly the social aspects of participation. I also think there is a lot to be gained by measuring conglomerates of participation dimensions in novel ways, such as by combining frequency and ‘with whom’ dimensions of the CAPE to examine youth's social participation (Kang et al. 2010). Examining interrelated sets of participation dimensions will contribute to a more appropriate language to describe participation as a holistic entity rather than in terms of discrete elements. Qualitative and mixed methods approaches will also add to our understanding of how physical, aesthetic, and opportunity-related qualities of activity settings combine with participatory experiences to influence child and youth outcomes and development. There is a greater need for participation outcome measures that are responsive to change, to allow examination of participation-level interventions and natural histories and trajectories of participation over time, as well as process-oriented measures that allow us to capture the dynamic nature of participation.

Summary of future directions

By combining approaches that examine participation in depth in different environmental units of analysis with approaches that examine participation in larger realms of the whole life space, we will enhance knowledge of child and youth participation for multiple purposes, including informing policy and contributing to evidence-based clinical practice. Directions ahead include increased focus on lived experiences and the use of experience sampling methods; the use of qualitative techniques, mixed methods, and physiological methods; and the development of tools and techniques with specific uses and for targeted populations, especially those who are hard to research and whose participation and participatory experiences are not well understood. These directions will provide a more complete understanding of the participation of children and youth with disabilities, enhance the delivery of well-conceived interventions in clinical and real-world settings, optimize participatory experiences and their benefits, and positively influence the lives of children, youth, and families.

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