‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities

Abstract

ICFInternational Classification of Functioning, Disability and Health QOL Quality of life PODCI Pediatric Outcomes Data Collection Instrument RCT Randomized controlled trial AIM Improving participation of children with disabilities is a priority; however, the participation construct lacks clarity. This systematic review investigated how researchers defined 'participation' and the language used in participation intervention research.METHOD Nine health and education databases were searched for intervention studies of children with disabilities that included a participation outcome. Quantitative data were extracted using a customized form, and participation text data were extracted verbatim. Themes were derived using a thematic coding approach. These participation themes were applied to the outcome measures used in the included studies to compare participation language with the methods used to quantify participation changes. RESULTSOf the 2257 articles retrieved, 25 were included in this review. Five participation themes and nine subthemes were developed. Two themes, attendance and involvement, were directly related to the participation construct. Three additional themes described related concepts: preferences, activity competence, and sense of self.INTERPRETATION Attendance and involvement seem to describe the essence of the participation concept. The related themes may provide important avenues to enhance participation outcomes. This review highlighted the need for researchers to define the construct under investigation clearly and select measures carefully, as measurement choice is the mechanism through which the concept is operationalized in research.The publication of the World Health Organization's International Classification of Functioning, Disability and Health (ICF) has resulted in an intensification of international interest in 'participation' as the ultimate health outcome. 1,2 The ICF defines participation as 'involvement in a life situation' 2 participation restriction is defined as 'problems an individual may experience in involvement in life situations'.2 Because there is no universal acceptance of the definition of participation, a discourse in the literature has developed about how to operationalize the concept. 3,4 This is critical, because without clarity about the concept, defining outcome goals and developing scales and measures to assess participation outcomes will remain open to question as to whether the measures are fit for purpose.One part of the complexity of the conceptual issue is the fact that the World Health Organization did not clearly distinguish between activity and participation within their classification system, offering authors four methods for determining when participation rather than activity was being classified.1,2 This lack of distinction provides ample opportunity for varied interpretations of the concept under investigation and hence varied approaches to measurement, 5 leading to imprecision and confusion in what is found and reported.Several authors describe particip...

Differences between Pre-School Children with and without Special Educational Needs Functioning, Participation, and Environmental Barriers at Home and in Community Settings: An International Classification of Functioning, Disability, and Health for Children and Youth Approach

“…The ICF-CY introduces a framework to understand child functioning with an emphasis on child participation (WHO, 2007). Participation in home and community settings is considered vital in early childhood, especially for young children with Special Educational Needs (SENs), as these are natural learning environments essential to their learning and development (Law, 2002;Dunst et al, 2006;Imms et al, 2016). Therefore, the main purpose of this study is to describe differences between Portuguese pre-school-aged children with and without SEN, characterizing their functioning, based on the frequency of participation in home and community activities and on their parents' perception of environmental barriers, based on an ICF-CY approach.…”

“…The concept of participation has been discussed in current literature as it is considered a major health and functioning outcome (Law, 2002;Imms et al, 2016). Enhancing participation can be considered the ultimate health and functioning intervention goal (Imms et al, 2016), because of its positive relationship with the well-being and quality of life (Law, 2002).…”

“…Enhancing participation can be considered the ultimate health and functioning intervention goal (Imms et al, 2016), because of its positive relationship with the well-being and quality of life (Law, 2002). Moreover, participation is assumed by international guidelines as a fundamental human right of all children (Brown and Guralnick, 2012).…”

“…Authors have been working on a clear definition of participation and on establishing key aspects for measurement purposes, for both research and practice (Coster and Khetani, 2008;Granlund, 2013;Imms et al, 2016). Participation is defined by the ICF as "involvement in life situations" (p. 9, WHO, 2007) and is considered a multidimensional concept (Granlund, 2013;King, 2013), measured in two dimensions: the frequency of attending a life situation and the level of engagement in each life situation.…”

Quality of Life and Psychosocial Well-Being in Youth With Neuromuscular Disorders Who Are Wheelchair Users: A Systematic Review

“…This is surprising, given social participation is an identified priority in youth with NMD 15 and the value of social connectedness to long term health and wellbeing is known 65,77 . Future longitudinal research utilising standardised measures to describe the social worlds of adolescents growing up with progressive, chronic illness is necessary to aid deeper understanding of how health care supports and interventions impact on adolescents' short and long term wellbeing 78 .…”