1.1

Materials and methods

1.2

Results

Table 1 shows the participants’ clinical characteristics and cognitive and psychological test scores. Most of the participants were single men. Although the mean age was higher in the SD group than in the TBI group, this difference was not statistically significant. With respect to recently collected normative data for France , the cognitive tests showed normal or slightly subnormal mean performance levels for most of the measured functions. In particular, the low WAIS III coding score (−1.7 SD) suggested significant cognitive slowing. The self-esteem scores were within the normal range. On the whole, the results were very similar in the SD and TBI groups, with the exception of a longer mean Stroop test completion time, a lower SSA score, a lower SSS score and slightly lower self-esteem in the SD group. However, these differences were not statistically significant.

In the G-MAP, the internal consistency of the activity limitation and participation restriction scores (evaluated for the set of items as a whole) was satisfactory, with a Cronbach’s α coefficient of 0.89 for each of these two dimensions. For activity limitations, the items in each of the six categories (please refer to the interview checklist for details) were generally homogeneous: the Cronbach α coefficients ranged from 0.40 (“community life”) to 0.80 (“social productivity”). For participation restrictions, the internal consistency of the various categories was lower; Cronbach’s α coefficient ranged from 0.17 (“community life”) to 0.77 (“self care”).

Table 2 presents the mean activity limitation and participation restriction scores for each of the 26 G-MAP items. The participation restrictions were severe for balancing the domestic budget, spousal and sexual relationships, educational activities, paid employment, non-remunerative employment and all the “community, social and civic life” items: engaging in charitable organizations, service clubs or professional social organizations, civic life, voting, religion and spirituality. Participation restrictions were present but less severe for relationships with parents, siblings, friends and acquaintances and for leisure activities. The “self care” and “domestic life” categories were less affected.

Table 3 presents the mean (SD) scores for activity limitations and participation restrictions in the six G-MAP categories. Activity limitations were above all present for “productivity” (notably financial independence) and “community life” (notably spiritual life). In contrast, activity limitations were minimal for “self care”. The “domestic life”, “interpersonal interactions and relationships” and “leisure” categories fell between these two extremes. The activity limitations were more marked for the interpersonal relationships ( P = 0.006) and “productivity” ( P = 0.011) categories in the SD group than in the TBI group. For “self care”, leisure and “community life”, the mean scores were very similar in the two groups (with a non-significant difference in a Mann-Whitney U test). Likewise, participation restrictions for interpersonal relationships ( P = 0.005), “productivity” ( P = 0.012) and “domestic life” ( P = 0.045) were more severe in the SD group than the TBI group. Hence, participation restrictions were always more marked in participants suffering from schizophrenic disorders. However, it is noteworthy that the “participation restrictions” ranking was exactly the same in the two groups.

The environmental factors “interpersonal interactions and relationships”, “attitudes” and “services, systems and policies” were analyzed descriptively for each of the 26 items. The score distribution varied strongly as a function of the items and subjects; this demonstrates the relevance of the checklist for a detailed, personalized assessment. The distribution often differed when comparing the two groups, which suggests that the effect of environmental factors varies according to the aetiology. An exhaustive analysis would be fastidious, given the number of factors and the number of items . Fig. 1 provides a few examples ( Fig. 1 ). Considering the G-MAP’s SSA factor, a larger number of social support categories was cited by the SD group than by the TBI group. In contrast, the TBI group mainly cited the “healthcare professionals” category (see Fig. 1 A, for example) as the most important category. In terms of the SSS factor, all types of response (from ‘very dissatisfied’ to ‘very satisfied’) were observed in the two groups and there was no particular predominance. The “attitudes” factor had a generally moderate role and was twice as likely to be rated as a facilitator than as a barrier. However, there were large inter-individual differences (for the “parents’, siblings’ and children’s attitudes” item, for example [ Fig. 1 B]). For the “seeking work or training” item, participants in the TBI group stated that attitudes were predominantly barriers ( Fig. 1 C). In contrast, participants in the SD group were indifferent to the above-mentioned attitudes. It is noteworthy that this item was never considered to be a facilitator. The “services, systems and policies” factor clearly had a more significant role and was variously judged to be a facilitator (for “domestic life”), a barrier (for “interpersonal relationships” and “productivity”) or both (for “leisure”). The facilitating effect of “administrative procedures” was mentioned by participants in the SD group but not those in the TBI group ( Fig. 1 D). The same difference was seen for the “financial independence” item.

Examples of the distribution of the environmental factor scores. SSD: social support availability; ATT: attitudes; SPol: systems and policies. A. Factor: social support availability, item: looking for work/training. B. Factor: attitudes, item: parents, siblings and children. C. Factor: attitudes, item: looking for work/training. D. Factor: systems and policies, item: administrative procedures.

1.3

Discussion

The present study sought to evaluate the relevance of the ICF’s theoretical model in a detailed, personalized analysis of the social integration difficulties faced by people with psychological and/or cognitive disabilities. We also took account of the role of the medical condition, as described by the interviewees. The ICF essentially focuses on the consequences of disability and does not imply direct causality.

However, we considered that it was important not to totally ignore the role of the medical condition and the putative link between the underlying condition and its consequences. Indeed, we found that a certain number of interviewees:

• •
  

  were very well aware of their difficulties;

  
  
• •
  

  talked about these difficulties freely and;

  
  
• •
  

  knowingly adapted to this situation ( Appendix 3 ).

Despite the very preliminary nature of the present study, our results indicated that:

• •
  

  the data agreed with the opinions held by clinicians and representatives of patient associations, which is an argument in favour of the validity of the assessment tool’s content;

  
  
• •
  

  taking account of environmental factors and specific aspects of a psychological and/or cognitive disability facilitates the provision of new information that is more accurate and more personalized than that provided by literature questionnaires – most of which were designed empirically or are based on other theoretical models.

Traumatic brain injuries and schizophrenic disorders were chosen here to illustrate the ICF model’s ability to analyze the same consequences (in terms of activity limitations and participation restrictions) for very different medical conditions and impairments. We intend to study other clinical situations in the future.

In the study population, activity limitations and participation restrictions primarily concerned productivity, such as looking for (or returning to) paid or non-remunerative employment, training and financial independence. It is well known that professional activity is one of the most important factors in the reintegration of TBI victims, since it provides financial independence, self-esteem, social integration and quality of life . The return to work is often considered as a return to psychosocial normality and marks the successful rebuilding of the person’s identity. Indeed, patients have great expectations in this respect . In industrialised countries, several TBI-specific back-to-work programmes have been implemented, including the UEROS network in France and holistic programs in the USA . Similar programmes are being developed for people suffering from chronic schizophrenic disorders . The programmes take account of impairments that restrict work capacities and there are specific rehabilitation measures for cognitive and behavioural impairments . By emphasizing the importance of environmental factors, our study provided novel information that complements the results of conventional surveys. Social support was stated as being available for some items (such as education, training and job seeking) by participants in the TBI group – perhaps as a positive effect of the UEROS programme – but was judged to be insufficient by participants with chronic schizophrenic disorders. The attitudes held by the general public and employers (considered to be a barrier by all the TBI victims) constitute a telling example of this. However, the marked inter-individual variability and inter-item variability are especially noteworthy. Now more than ever, professional integration programmes must take account of the different facets of person’s life situation.

The activity limitations and participation restrictions also applied to community life (i.e. involvement in voluntary organisations and clubs, administrative procedures and civic, religious and spiritual life). The scientific and medical literature accords less importance to these fields and data are scarce – which enhances the value of our present results. However, the very low value of Cronbach’s α coefficient for this category (0.17) suggests that it is heterogeneous and should be interpreted with caution until data for the general population become available. Indeed, it would be interesting to collect validated data in the general population in order to establish the extent to which integration problems are related to (for example) the high complexity or poor availability of support schemes, the poor attribution of resources or, more generally, the economic problems encountered in today’s society.

A study in healthy controls (with validation of the selected categories and items) is underway.

In the “economic and social productivity” and “community, social and civic life” categories, participation restrictions were generally more severe than the activity limitations. This suggests that the participants considered that the environment hardly acts as a facilitator: they would be able to do something (if pushed) but do not attempt to do so!

Lastly, participation restrictions were also more marked than activity limitations for interpersonal relations (notably spousal and sexual relationships) and leisure, suggesting that the participants considered that the environment could be a barrier. However, our analysis of the data on the four environmental factors did not enable us to identify a causal relationship for any given factor in particular; the situations are very individualized and vary from one person to another. It would be interesting to adopt a therapeutic approach that takes account of the family system as a whole (the neurosystems approach, for example ).

In view of the small sample size, it was not possible to draw definite conclusions on the specificity of participation restrictions as a function of the underlying medical condition (TBI vs. schizophrenia). In the present work, the underlying condition was merely a way of designating the two study groups. In the spirit of the ICF, the underlying condition is not, of course, the “cause”. Schizophrenia and TBI translate into a certain way of life – a certain way of “functioning” that can be described objectively through the activities that people are able (or not able) to perform.

The TBI participants appeared to have a clearer view of how social support can be organised. They also had a higher opinion of the efficacy of this support (in a greater variety of categories) than people suffering from schizophrenic disorders did. The TBI group was also more satisfied with the support that they actually received. This is undoubtedly related to the fact that most of the interviewees knew about or were participating in a UEROS programme and thus may indicate inclusion bias.

On the whole, activity limitations and participation restrictions appeared to be more severe in the SD group than in the TBI victims. In contrast, the cognitive test results were almost identical in the two groups. This observation suggests that:

• •
  

  there was a difference between the two groups in terms of how they modulated or coped with their impairments and;

  
  
• •
  

  the impairments in schizophrenia are not exclusively cognitive.

However, the difference appears to be purely quantitative, since the G-MAP checklist did not reveal any disease-specific restrictions or those due to the presence of a medical condition. This last point agrees with the fact that the ICF focuses on the interaction between the different fields on one hand and personal functioning on the other. The G-MAP checklist accurately reports on individual needs in terms of compensation, human assistance and financial assistance and could therefore be of significant value to the social services running these operations. The G-MAP checklist appears to be highly compatible with the procedure currently used by county council social services in France to attribute compensation and could provide some valuable, additional information.

Of course, the impact of the present pilot study should not be over-extrapolated, in view of the sampling bias and the limitations of the assessment tool (which has not yet been fully validated). The data collection procedure, the inter-observer reproducibility, the sensitivity to change and to demographic variables (notably age and educational level), the role played by certain factors (such as the participants’ awareness of their medical condition) is now being documented. The distinction between activity limitations and participation restrictions is difficult to score for some items, such as family relationships, sexuality and spirituality. Normative data in healthy control populations would be useful and are now being collected. Much larger samples will, of course, be necessary for going beyond an individual, personalized assessment and highlighting some general trends. We intend to pursue this work because our preliminary results appear to be encouraging. “Functioning” (as defined by the ICF) certainly appears to result from a dynamic interaction between the functional and social consequences of a person’s health problems on one hand and environmental factors on the other. In fact, the environmental factors interact with all the components of functioning and disability. This notion of interaction between individual and environmental dimensions as a guide to a disability situation raises questions about the nature and influence of environmental factors that facilitate or prevent social participation.

Our present analysis of selected environmental factors showed that the latter are sensitive and discriminant. Furthermore, the selected environmental factors were readily understood by the participants and are relevant – suggesting face validity. At the end of each interview, each interviewee was asked to give his/her opinion on how appropriate the questions were. A large number of people stated that they had never been asked this type of question before and that the questions were thought-provoking. On the basis of these interviews, our general impression is that the participants identified quite closely with the various difficulties resulting variously from environmental factors, personal factors, difficulties in doing or participating in an activity and the conjunction of several fields.

The inter-item variability in the scores for these factors suggests their impact depends on the field of disability and emphasizes the relevance of an item-by-item evaluation (rather than a general evaluation). We consider that item-by-item evaluation provides an accurate description of the interviewee’s actual functioning.

This result supports the ICF model , and provides more information than the tools generally used to evaluate a disabled person’s reintegration into society. The issue of personal factors remains and we suspect that they may have a significant role in psychological disability situations. Although this aspect is not addressed in the ICF, we invited each interviewee to draw their family’s genogram at the beginning of each interview. This information was very frequently “coupled” to the interviewee’s statements, in order to provide more precise information or expand on an answer.

1.4

Conclusion

France’s 2005 Disabled Persons Act defines disability as “any limitation or participation restriction in life in society… resulting from a substantial alteration… in one or more cognitive or psychological functions”.

Seven years on, there is still relatively little accurate information in the literature concerning the social and professional integration of people with cognitive or psychological disabilities, when compared with people with physical disabilities. The ICF’s multidimensional model appears to be a very valuable, relevant theoretical framework for developing research in this field. We intend to continue our validation of the G-MAP checklist, which appears to be compatible with existing procedures in France and is well suited to detailed, individualized assessments of participation.

Disclosure of interest

The authors declare that they have no conflicts of interest concerning this article.

Acknowledgments

This research was funded by the French Ministry of Research (grant 2008/90). The authors wish to thank J. Delbecq, F. Weber and all the people who worked on the call for tenders. The authors also wish to thank MC. Cazals (Vice-Chairman of the UNAFTC) and H. Roustan (Chairman of the Gironde section of the UNAFAM) for making themselves available and providing advice and encouragement and Dr X. Debelleix for help with patient recruitment.

2.1

Matériel et méthodes

2.2

Résultats

Le Tableau 1 présente les caractéristiques cliniques des patients et les résultats des tests cognitifs et psychologiques. Les sujets sont surtout des hommes, célibataires. La moyenne d’âge est plus élevée dans le groupe de patients souffrant de troubles schizophréniques, mais de façon non significative. Par rapport aux normes francophones récentes , les tests cognitifs montrent des performances moyennes normales ou légèrement abaissées dans la plupart des fonctions mesurées. On peut cependant souligner la faiblesse du score standard au Code de la WAIS III (−1,7 ET), qui suggère un ralentissement cognitif significatif. L’estime de soi se situe dans la norme. Globalement, les résultats sont très comparables entre les 2 groupes, à l’exception d’un temps moyen plus long au test de Stroop, d’un soutien social jugé moins disponible et moins satisfaisant et d’une estime de soi légèrement inférieure chez les patients souffrant de troubles schizophréniques. Ces différences ne sont cependant pas significatives.

À la G-MAP, la consistance interne des limitations d’activité et des restrictions de participation, évaluée sur la totalité des items, est satisfaisante avec des valeurs du coefficient α de Cronbach de 0,89 pour chacune de ces deux dimensions. Pour les limitations d’activité, les items de chacune des 6 catégories (pour le détail des rubriques abordées, voir l’exemplaire de la grille d’entretien) sont globalement à peu près homogènes : les coefficients α de Cronbach vont de 0,40 (catégorie vie communautaire) à 0,80 (catégorie productivité). Pour les restrictions de participation, la consistance interne des différentes catégories est plus faible : α de Cronbach de 0,17 (catégorie vie communautaire) à 0,77 (catégorie soins personnels).

Le Tableau 2 présente les scores moyens de limitations d’activité et de restrictions de participation pour chacun des 26 items de la G-MAP. Les restrictions de participation sont sévères vis-à-vis de la gestion du budget, la vie de couple, les relations sexuelles, les études, le travail ou les activités bénévoles, et tous les items de vie communautaire : participation au milieu associatif, gestion administrative, vie citoyenne et vote, spiritualité. Elles sont présentes mais moins sévères vis-à-vis des relations avec les parents, la fratrie, les amis et les connaissances, et vis-à-vis des loisirs. Les catégories soins personnels et vie domestique sont moins concernées.

Le Tableau 3 présente les scores moyens et écarts-types obtenus aux limitations d’activité et restrictions de participation pour les 6 catégories de la G-MAP. En ce qui concerne les limitations d’activité, on observe qu’elles sont surtout présentes pour productivité, notamment l’indépendance financière, et vie communautaire, notamment la vie spirituelle, et qu’elles sont au contraire minimales pour soins personnels. Les catégories vie domestique, relations et loisirs sont en position intermédiaire. Les limitations d’activité sont plus marquées chez les personnes souffrant de troubles schizophréniques que chez les traumatisés crâniens pour les catégories relations interpersonnelles ( p = 0,006) et productivité ( p = 0,011). Pour soins personnels, loisirs et vie communautaire, les scores moyens sont proches (U de Mann-Withney non significatifs). De la même façon, les restrictions de participation sont plus importantes chez les personnes souffrant de troubles schizophréniques que chez les traumatisés crâniens pour les catégories relations interpersonnelles ( p = 0,005), productivité ( p = 0,012) et vie domestique ( p = 0,045). Les deux groupes sont donc différents dans la sévérité des restrictions qui apparaissent systématiquement plus marquées chez les personnes souffrant de troubles schizophréniques. Cependant, il est intéressant de noter que l’ordre d’importance des catégories de restrictions de participation est exactement le même dans les deux groupes.

En ce qui concerne les facteurs environnementaux, les trois facteurs : soutien social, attitudes, systèmes et politiques ont été analysés de manière descriptive pour chacun des 26 items. La distribution des scores apparaît très variable en fonction des items et des sujets, ce qui montre la pertinence de la grille pour une évaluation personnalisée détaillée. La distribution est, le plus souvent, différente entre les groupes, ce qui suggère que l’effet des facteurs d’environnement varie selon le type d’étiologie. Une analyse exhaustive serait fastidieuse étant donné le nombre de facteurs : 4, multiplié par le nombre d’items : 26. La Fig. 1 en donne quelques exemples ( Fig. 1 ). Quand on observe le facteur « disponibilité du soutien social » évalué par la G-MAP, on remarque qu’un plus grand nombre de catégories de soutien social est cité par les personnes souffrant de troubles schizophréniques que par les personnes victimes de traumatisme crânien. Par contre, ces derniers citent majoritairement la catégorie « professionnels » (par exemple, Fig. 1A ), celle-ci étant vécue comme la catégorie dominante. Pour le facteur « satisfaction du soutien social », tous les types de réponse de « insatisfait » à « satisfait » s’observent dans les deux groupes, sans prédominance particulière . Le facteur « attitudes » joue un rôle globalement modéré, jugé deux fois plus souvent facilitateur qu’obstacle, mais avec de grosses variations d’un sujet à l’autre, par exemple pour l’item attitudes des « parents, fratrie, enfants » ( Fig. 1B ). Pour l’item « recherche de travail ou formation », les attitudes jouent très majoritairement un rôle d’obstacle pour les personnes ayant subi un traumatisme crânien ( Fig. 1C ). Quand les personnes souffrant de troubles schizophréniques sont concernées, elles peuvent en revanche être indifférentes aux attitudes, ce qui n’est pas le cas des traumatisés crâniens. Pour cet item, il est intéressant de souligner que la réponse « rôle facilitateur » n’a jamais été donnée. Le facteur « systèmes et politiques publiques » joue un rôle nettement plus important, tantôt jugé facilitateur (vie domestique), tantôt obstacle (relations interpersonnelles, productivité), tantôt les deux (loisirs). L’effet facilitateur dans le domaine des « démarches administratives » est mentionné par les personnes souffrant de troubles schizophréniques, mais pas par les traumatisés crâniens ( Fig. 1D ). On observe la même différence pour l’item « indépendance financière ».

Only gold members can continue reading. Log In or Register to continue

Share this:

• Click to share on Twitter (Opens in new window)
• Click to share on Facebook (Opens in new window)

Related

Related posts:

The assessment and treatment of postural disorders in cerebellar ataxia: A systematic review Effect of cardiac rehabilitation on left atrial functions in patients with acute myocardial infarction Rehabilitation of a hemiplegic patient with cardiac assistive device Effort training in Parkinson’s disease: A systematic review Parent–Professional Partnership The Bedside Examination in Dysphagia

Stay updated, free articles. Join our Telegram channel

Join