Long-term changes in participation after stroke.(Grand Rounds)

Background and purpose: People who have had a stroke may have difficulty resuming some of their previous activities, which leads to a decline in their participation in daily activities and social roles. The purposes of this study were to compare participation 6 months (T1) and between 2 and 4 years (T2) after discharge from a rehabilitation unit and to verify if any changes were associated with changes in personal and environmental factors. Method: Participation of people who had had a stroke was measured at T1 and T2 with the Assessment of Life Habits. Results: A significant reduction (p < .001) in participation in daily activities was observed, specifically in the following categories: nutrition, p < .001; fitness, p = .004; personal care, p < .001; and housing, p = .001. However, participation in social roles was maintained during this period (p = .10). The increased perception of technology as a facilitator (environmental factor) over time explained a part of the decline in participation ([R.sup.2] = 0.1 3). Conclusion: Factors associated with the reduction in participation in daily activities should be further studied in order to prevent this decline. Key words: handicap, longitudinal study, participation, stroke

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Strokes are the third leading cause of long-term disability, (1) and their incidence increases markedly with advancing age. (2) With improvements in health care, the poststroke survival rate has risen considerably. However, many people who have had a stroke present persistent physical, psychological, and functional sequelae (3) that have an impact on their daily activities and quality of life, which cannot be ignored. For example, some activities related to mobility, personal care, leisure, and work will be difficult if not impossible to do in some cases. To reduce the impact of stroke sequelae, intensive functional rehabilitation programs are offered in the subacute phase. Even with these interventions, some people will not be able to resume their previous activities, (4) leading to a restriction of participation in their daily activities and social roles.

Despite this finding, intensive functional rehabilitation is essential in many cases after the acute phase of the disease; its purpose is to minimize the appearance of handicap situations and encourage more active participation. Therefore, returning to an optimal living environment is an important aspect of rehabilitation, but, paradoxically, it is also the most difficult and problematic phase. (5) When patients return to their environment, they are confronted with their limitations, some of which are attributable to residual impairments and disabilities (personal factors) while others may be a function of their social and physical living environment (environmental factors). It has been found that many stroke survivors do not resume a normal social life even when their physical disabilities cease to be an obstacle. (5,6) In such situations, obstacles in the person's environment can restrict daily activities or social roles that the person values.

Over the last two decades, theoretical work has led to a better understanding of the construct related to participation. In the 1990s, Fougeyrollas and his team (7) made a substantial contribution to the advancement of knowledge about this concept by developing the Disability Creation Process (DCP) model (Figure 1). This model comes from the work of the Quebec International Classification of Impairment, Disability and Handicap (ICIDH) Committee, which had led to the development of the current International Classification of Functioning, Disability and Health (ICF). The DCP is well known and used not only in Canada but also in many European countries; it was developed in both French and English. In the DCP model, participation refers to the accomplishment of or engagement in daily activities and social roles resulting from the interaction between the individual's characteristics (personal factors: identity [such as age, gender, education] and the individual's organic system and capabilities) and the physical and social components of his/her life milieu (environmental factors) that modulate the accomplishment of valued activities. In this model, participation is operationalized by the concept of life habits, which are defined as daily activities and social roles valued by the person in his or her sociocultural environment. Life habits are grouped into 12 categories, 6 of which relate to daily activities (nutrition, fitness, personal care, communication, housing, and mobility) and the other six to social roles (responsibilities, interpersonal relationships, community life, employment, education, and leisure). These activities or social roles ensure the survival and development of a person in society throughout his or her life. The most recent version of the ICF (8) defines participation as the person's involvement in a life situation and presents a list of nine participation domains that have similarities (e.g., communication, self-care, mobility, domestic life, interpersonal interactions and relationships, and community, social, and civil life) with the 12 DCP life-habits categories.

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Although we have some general knowledge about the impact of strokes on personal factors (impairment and disability) after intensive functional rehabilitation, little information is available about their long-term effects on participation. People are usually discharged from rehabilitation when they are independent in personal care and mobility but often without any planned systematic interventions to help them when they return to their living environment. This may be partly attributable to the current socio-health system that requires rehabilitation professionals to prioritize improvement in independence in activities of daily living (ADLs) and mobility in order to discharge clients as soon as possible.

Reduction in participation is a significant consequence for people with a chronic disabling …