Conceptualization and Definition of Participation:
There has been tremendous progress in understanding how individuals resume participating in life activities following a health condition. In 2001, when International Classification of Functioning, Disability and Health (ICF) (Gray & Hendershot 2000) replaced the International Classification of Impairments, Disability and Handicap (ICIDH) there was a change from concept handicap to participation. Participation is defined in the ICF as involvement in a life situation and participation restriction is defined as problems an individual may experience while involved in life situations (World Health Organization 2001). This is a significant shift because handicap focused on the disadvantages for an individual in life roles considered normal (i.e. based on age, sex, and social and cultural factors), which was also referred to as a societal perspective. It is important to note that the World Health Organization’s ICIDH and ICF models are just one way to conceptualize measuring life roles/activities. Other disciplines have proposed measuring similar concepts but have used alternate terms, which are conceptually quite similar, and include: social health; social adjustment; social or community re-integration; independent living; instrumental activities of daily living; and quality of life (Dijkers et al. 2000).
Since the concept of measuring involvement in life situations is very broad, there will likely never be consensus, as to what life dimensions should be included and what construct should be addressed (Dijkers et al. 2000). In the ICF, activity and participation domains are listed together and the user of the model decides which ones to consider activity versus participation. Jette et al. (2003) analyzed items based on the ICF concepts activity and participation and demonstrated that they are distinct concepts, with the former assessing basic tasks (e.g. the ability to climb stairs) and the latter assessing more complex life tasks (e.g. preparing meals). It has been recommended that in future revisions of the ICF that these two concepts are better defined (Dijkers et al. 2000; Whiteneck 2006).
The perspective of how to assess participation has also evolved over time. Measures of handicap primarily captured observable information, such as the frequency which an individual performed roles (e.g. hours of paid work) and in this review are called measures assessing objective participation. However, measures of objective participation do not capture the individual’s perspective about the impact of the health condition and the problems they experience when carrying out everyday activities or fulfilling social roles. As a result, developers incorporated the perspective of participation as perceived by the individual which has been termed subjective or person-perceived participation (i.e. cognitive, emotional and motivational aspects of participation) (Noreau et al. 2005). Although the ICF model does not explicitly include a subjective dimension, the replacement of the term handicap with the term participation and the inclusion of a broader range of life roles provide the opportunity to capture subjective information. In this review, the term objective participation will be used to describe handicap and the term subjective participation will describe person perceived participation.
For the purpose of this review, the measures included in this section had questions related to most ICF dimensions of participation, particularly, interpersonal relations/interactions/relationships, major life areas (e.g. education, employment), and/or community/ social/civic life. All of the measures have been tested, to varying degrees on individuals with SCI.
The measurement of participation has been termed the most meaningful outcome of rehabilitation (Cicerone 2004); however, it is probably also the most challenging to measure since there are many things that contribute to a person’s level of participation. It is important not to select an outcome measure just because it is commonly used, but rather consider whether it provides information about the outcome of interest (Backman 2005). In this review consideration was given to the domains (i.e. content) which is frequently determined from the conceptual model, the perspective (i.e. objective versus subjective participation) of a particular measure, the psychometric properties as well as logistical issues (e.g. number of questions, patient burden etc.).
The measures included in this review were based on various conceptual models. Some of the measures have been developed based on the ICIDH model (i.e. CHART) or the ICF model (IPAQ). Other measures have used other models such as the Disability Creation Process model (Life-H). The RNL and the PARA-SCI did not use a specific model, but were developed based on the concepts re-integration and physical activity, respectively. All of the measures included multiple domains (i.e. are generic) with the exception of the PARA-SCI, which just focused on physical activity. The domains included vary depending on how participation was defined. Most measures (except PARA-SCI) included some items on self-care, mobility, family/social relations and work/education a few measures included details on items such as parenting, attending religious services or conducting economic transactions. The content and the measurement properties of the participation measures are designed to be used in the community setting.
The participation perspective varies among the measures. Some measures primarily assess objective participation (CHART, PARA-SCI) while other assess subjective participation (IPAQ, Life-H, RNL). Objective participation measures such as the CHART are primarily useful for research purposes to describe from a societal point of view, how individuals with SCI differ from other patient populations and healthy controls. The CHART is probably the most widely used participation measure for individuals with SCI. However, information provided in the CHART does not include the individual’s perspective and so information about how the person performs the tasks as well as what tasks are important to them is not captured, which is a significant limitation. In contrast, the subjective measures of participation (IPAQ, Life-H, RNL) offer tremendous potential to clinicians and researches working in the area of SCI.
Most of the participation measures have established some aspects of reliability and validity. The IPAQ is a relatively new measures and so not much has been published specifically on individuals with SCI. To date, very little has been published on responsiveness for any of the measures, with the exception of the IPAQ. In Canada, data using the RNL in individuals with SCI will become available since it is part of the NRS, although little work has been done to establish its psychometric properties in this population. Finally, measures as the LIFE-H include information on satisfaction with participation and clinicians and researchers can use this information to identify areas or target interventions to those life activities that are most important to the individual.
Participation measures, particularly ones that measure subjective participation, provide important information for individuals working in the field of rehabilitation since they assess how the individual is doing in the community, which some would argue is the ultimate rehabilitation outcome. Future work establishing the psychometric properties of participation instruments will be essential to ensure the measures are reliable, valid and responsive for assessing participation in individuals with SCI thereby enabling clinicians and researchers to select appropriate measures.