Patrick Fougeyrollas

Social consequences of long term impairments and disabilities: conceptual approach and assessment of handicap.

OBJECTIVES To present a conceptual model of disablement adapted from the WHO model and to conduct a pilot study with a measurement tool (LIFE-H) of the concepts of life habits and handicap situations. DESIGN Content validity and test-retest reliability study. SETTING General community. PARTICIPANTS A panel of 12 experts of rehabilitation for the process of content validity and 49 individuals with spinal cord disorders (adults and children) for the reliability study. OUTCOMES MEASURES a persons life habits (activities of daily living and social roles). RESULTS The LIFE-H questionnaire was designed to assess the handicap situations observed in daily life of individuals with disability. The experts concluded that the LIFE-H items covered most of a persons life habits (ADL and social roles) and that it could be used to determine the appearance of handicap situations. The LIFE-H total score showed a good level of reliability for the children and the adult samples (ICC = 0.73 and 0.74, respectively). Taken individually, a majority of life habit categories have shown a moderate to high reliability level (ICC > or = 0.50) while a few life habit categories such as the interpersonal relationship or nutrition showed a lower reliability level. CONCLUSION The development of LIFE-H allows fulfillment of the need to determine the disruptions in life habits of persons with disabilities.

Measuring social participation: reliability of the LIFE-H in older adults with disabilities

Purpose: Much more attention should be paid to instruments documenting social participation as this area is increasingly considered a pivotal outcome of a successful rehabilitation. The purpose of this study was to document the reliability of a participation measure, the Assessment of Life Habits (LIFE-H), in older adults with functional limitations. Methods: Eighty-four individuals with physical disabilities living in three different environments were assessed twice with the LIFE-H, an instrument that documents the quality of social participation by assessing a persons performance in daily activities and social roles (life habits). Results: The intraclass correlation coefficients (ICC) computed for intrarater reliability exceeded 0.75 for seven out of the 10 life habits categories. For interrater reliability, the total score and daily activities subscore are highly reliable (ICC ⩽ 0.89), and the social roles subscore is moderately reliable (ICC = 0.64). ‘Personal care’ is the category with the highest ICC, and for five other categories ICCs are moderate to high (< 0.60). Conclusion: LIFE-H is a valuable addition to instruments that mostly emphasize the concepts of function or functional independence. It is particularly meaningful to evaluate the participation of older adults in significant social role domains such as recreation and community life. It may be considered among the instruments having the best fit with the ICF definition of participation (the persons involvement in a life situation) and a majority of its related domains.

Measuring participation in children with disabilities using the Assessment of Life Habits

The objectives of this study were: (1) to examine the psychometric properties of the Assessment of Life Habits (LIFE‐H) for children; and (2) to draw a profile of the level of participation among children of 5 to 13 years of age with various impairments. The research team adapted the adult version of the LIFE‐H in order to render it more appropriate for the daily life experiences of children. Content validity was verified by an expert panel of 29 people, made up of parents, paediatric clinicians, and researchers. Reliability and construct validity of the LIFE‐H for children (interview‐administered form) was tested during an experiment that comprised three sessions of interviews with a group of 94 parents of children with disabilities (36 males, 58 females; mean age 8y 10mo [SD 2y 6 mo]; diagnostic groups: cerebral palsy, myelomeningocoele, sensory‐motor neuropathy, traumatic brain injury, and developmental delay). Overall, the LIFE‐H showed high intrarater reliability with intraclass correlation coefficient values of 0.78 or higher for 10 out of 11 categories. The correlations between the LIFE‐H and the tools used in pediatric rehabilitation varied, and categories with similar constructs generally led to higher correlations. The psychometric properties of the LIFE‐H are appropriate and its content allows a complete description of participation among children with disabilities.

Participation after spinal cord injury: the evolution of conceptualization and measurement.

The increasing life expectancy after spinal cord injury has given social participation a new recognition as one of the ultimate goals of a comprehensive rehabilitation process. Recent evolution of the concept suggests 2 different approaches to document participation after spinal cord injury and a careful appraisal of the related outcome measures is important as discrepancies of results between the 2 approaches can be significant. Literature on objective participation reports a large variability in several dimensions that are particularly influenced by intrinsic factors such as severity of injury and secondary impairments. The direct influence of the environmental factors remains to be demonstrated by empirical studies. There are fewer tools available to evaluate subjective impressions of participation but recent investigations support the importance of taking account of the persons perceived restrictions participation in order to get better understandings of an individuals specific needs and problems. The aim of this article is to present the evolution of the conceptualization and measurement of the two approaches and to describe the level of participation of individuals with SCI.

Interaction of Environment with Individual Characteristics and Social Participation: Theoretical Perspectives and Applications in Persons with Spinal Cord Injury

Understanding the role of environment in the creation of diseases and traumas and their organic, functional, and social consequences is at the heart of theoretical and practical debates in rehabilitation and disability studies. Starting with an analysis of recent conceptual evolution, we exemplify the environmental and systemic approach in individuals with spinal cord injury in three heuristic ways: (a) quality of participation as an outcome of interaction between personal factors and environment, (b) occurrence of secondary impairments and disabilities as an outcome of interaction between environment and participation profile, and (c) environmental adaptation as an outcome of organic, functional profile and participation profile.

Perceived Influence of the Environment on Social Participation Among Individuals with Spinal Cord Injury

There is a need to better understand the influence of environment in the lives of persons with spinal cord injury (SCI) so that interventions can be proposed to enhance life satisfaction. The purpose of the study was to identify the major perceived environmental facilitators and obstacles to social participation. Data collected with the Measure of Quality of Environment suggest that most primary environmental facilitators are social, whereas the main obstacles are physical. Moreover, the perceived influence of the environment varies among individuals according to their personal characteristics (age, gender, level of injury), which illustrates the dynamics of the interactive process between personal (intrinsic) and environmental (extrinsic) factors.

Toward an explanatory model of social participation for adults with traumatic brain injury.

ObjectiveTo identify resiliency factors that could improve social participation for adults with traumatic brain injury. DesignCross-sectional single measurement, correlational and exploratory study, including quantitative and qualitative data. ParticipantsFifty-three community-dwelling people with sequelae of traumatic brain injury, individually interviewed, which included filling out questionnaires and answering open-ended questions. Main MeasuresSocial participation, self-efficacy, and positive mental states. ResultsDynamism, self-efficacy, and will account for 51% of the variance in social participation and are the main resiliency factors. Fatigue is one of the sequelae that pose the greatest challenge to self-efficacy and limit social participation. ConclusionResiliency factors constitute a target for research and intervention for this population.

The Caring-Disability Creation Process model: a new way of combining 'Care' in nursing and 'Rehabilitation' for better quality of services and patient safety

In an effort to continuously improve the quality of the services provided to persons in rehabilitation and patient safety, this article presents a model for the development of a Caring-Disability Creation Process that combines two elements that, in the past, have often been separated: care in nursing and rehabilitation. This new model and its underlying concepts introduce to a comprehensive approach in the recognition of the added value of caring by the contribution of rehabilitation nurses making an optimal development of the individuals potential and achieving successful social participation.

Continuer à s’engager dans des loisirs après avoir été infecté au VIH : entre quête de normalité et prescription sociale

Avec le développement des trithérapies et l’allongement de la durée de vie avec le VIH, de nouvelles questions se posent aujourd’hui quant à l’impact du diagnostic, et de la prise en charge à laquelle il confronte. Quand certains parviennent à résister aux injonctions biomédicales à la prise en charge et à préserver les loisirs d’avant le diagnostic, d’autres interrompent ces activités sociales et de loisirs, ou s’engagent dans des dispositifs associatifs où les loisirs deviennent un outil de prise en charge. L’article présente des données recueillies dans deux enquêtes : une sur l’engagement dans les loisirs physiques et sportifs des personnes vivant avec le VIH (PVVIH), par questionnaire (n = 619), et une sur la participation sociale, par entretien semi-directif (n = 21) et par observation participante des dispositifs de loisirs proposés par quatre associations du Languedoc-Roussillon. Elles montrent que les trajectoires de loisirs sont à la fois liées aux situations sanitaires et sociales et au type d’expérience du VIH. Les loisirs ne dérogent pas à l’alternative entre deux logiques, une de préservation d’une vie « normale » et une d’appropriation du statut de malade chronique, qui traversent par ailleurs tous les domaines de l’existence des PVVIH.

Disability, Rehabilitation Research and Post-Cartesian Embodied Ontologies – Has the Research Paradigm Changed?

Abstract Purpose Since the mid-1990s, the social model of disability has come under scrutiny. Several researchers have examined the role of ontology (philosophical ideas about the nature of what it means to be human) in relation to disability. In this paper, we situate this burgeoning understanding of disability within the set of post-cartesian ontologies, which disrupt the separation of the mind from the body and its attendant dichotomies. Furthermore, we seek to show how such a change can carry through to the research paradigm and therefore affect tangible outcomes of disability research. Design/methodology/approach A commitment to an embodied ontology requires first and foremost that researchers rethink what is being studied by focusing on the diverse characteristics of being and its actualization within the world. This will involve an emphasis on the lived experience of the body, including issues of affect, identity and movement, as well as broader issues of embodied being. Findings Using a research program currently underway at the Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS) as a detailed example, we draw on the ontological framework to help articulate the way research can be re-organized. We show how projects at different scales can be brought to work together, and highlight how a focus on embodiment issues facilitates such multi-disciplinary, inter-project collaboration. We note that adopting such an ontology-based framework will accomplish three major outcomes: (1) increase the relevance and effectiveness of new projects with regard to the overall vision; (2) enhance cross-project synergies and ensure stronger ties between research and practice; and (3) contribute to shifting the underlying ontology from a more cartesian approach to a post-cartesian embodied perspective. Originality/value The new ontologies embrace, integrate and extend the earlier social and biomedical perspectives, and offer a critical perspective on technology. The embodied approach recognizes not only the embodiment of research subjects, but also the embodied experience of the researchers themselves. In addition, the approach leads to a more holistic organization of research within a global, interconnected structure of projects rather than simply a collection of separate projects organized into thematic areas, as was done in previous decades. This reorganization of research enhances the ability to engage academic researchers with practitioners not just in the hospital and clinical settings, but also within the wider community.