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The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

The problem of this study was to better understand spouse caregivers' leisure involvement, experience, and barriers and their relationships with perceived burden. Thirty-six wife and 19 husband caregivers of persons with Alzheimer's disease and related disorders volunteered to participate in this study, either by mailed questionnaire or interview. Respondents were primarily female, white, with an average age of 72 years. The conclusions of the study were: (a) caregivers significantly reduce both their leisure involvement; (b) self-reported health, perceived social supports, income level, use of paid help, and leisure activity patterns are major factors associated with caregivers' leisure; and (c) leisure barriers are a significant contributor to caregivers' perceived burden. Recommendations were presented for caregivers, practitioners, and future study.

Etude 1 – Cette étude de validation du CGSQ-21 en langue française a permis d’étudier les propriétés psychométriques d’une échelle évaluant le fardeau chez les parents d’enfants avec Troubles du Spectre de l’Autisme (TSA). Il est retrouvé que le modèle à trois facteurs est le plus adapté à la structure du FCGSQ-21. Le fardeau objectif ainsi que le fardeau subjectif internalisé et externalisé sont retrouvés comme les trois facteurs de cette échelle. L’homogénéité du FCGSQ-21 dans cette étude est excellente avec un alpha de Cronbach à 0,90. Etude 2 – L’objectif est d’étudier le bien-être psychologique des parents ayant un enfant avec un Trouble du Spectre de l’Autisme (TSA) en comparaison avec celui des parents ayant un enfant avec un Syndrome de Down (SD) mais aussi ayant un enfant au développement typique (DT). Il existe des différences significatives au niveau du fardeau perçu par les parents des trois échantillons de cette étude (F (2,56) = 18,34 ; p ≤ 0,001), de l’anxiété et de la dépression (F (2,56) = 5,30 ; p =0,008 ; F (2,56) = 4,72 ; p = 0,013). Il est retrouvé également des différences significatives entre le vécu des parents d’enfants avec TSA et avec SD au niveau de l’ensemble des variables de cette étude, notamment au niveau de la sous-échelle « Coordination Globale des Soins » (M SD = 6,7 ; ET = 1,82, M TSA = 5,24 ; ET = 1,67 ; t = 2,76, p = 0,009). Etude 3 – Dans un premier temps, le modèle transactionnel-intégratif-multifactoriel (TIM) adapté à la situation de parents d’enfants avec TSA a été testé et dans un second temps, des profils de parents ont été mis en lumière en lien avec leur bien-être psychologique face au handicap de leur enfant. La disposition à l’optimisme apparaît être une variable explicative du bien-être psychologique et l’anxiété et la dépression viennent se positionner en variables médiatrices entre la disposition à l’optimisme et la perception du fardeau chez les parents. Trois profils de parents ont été mis en évidence. Un profil de parents (n=63) présente un bien-être altéré. Le 2e profil (n=29), montre des parents avec un bien-être psychologique préservé. Enfin, le 3e profil (n=75) est un profil homogène.Etude 4 – Cette recherche a pour but d’explorer le vécu des parents d’enfants avec TSA selon le genre : mères et pères face au TSA. Les comparaisons de moyennes des pères et des mères aux différents questionnaires montrent un score de satisfaction de la coordination des soins et du soutien respect des soins plus élevé chez les mères. Aussi elles obtiennent un score de coping dyadique délégué (partenaire) et de coping dyadique commun plus élevé que celui des pères. L’analyse qualitative a révélé que les pères et les mères n’occupent pas, le plus souvent, la même place auprès de l’enfant. / Study 1 – This validation study aims to investigate the psychometric properties of the French version of the 21-item Caregiving Strain Questionnaire (FCGSQ-21), which evaluates caregivers of children with Autism Spectrum Disorder’s burden. A three-factor model was found to best fit the structure of this scale. Those factors include the objective burden as well as the internalized and externalized subjective burdens. In the present study, the FCGSQ-21’s homogeneity is excellent with a Cronbach’s alpha of .90. Study 2 –This study aims at investigating the psychological well-being of parents of children with Autism Spectrum Disorder (ASD) while comparing it to that of parents of children with Down Syndrome (SD) as well as that of parents of typically developing children (DT). Significant differences appear between parents of those different groups for perceived burden (F (2,56) = 18,34 ; p ≤ 0,001), and anxiety and depression (F (2,56) = 5,30 ; p =0,008 ; F (2,56) = 4,72 ; p = 0,013). Other significant differences are observed between parents of children with ASD and SD on all variables in this study, most notably for the sub-scale “Global Coordination of Care” (M SD = 6,7 ; ET = 1,82, M TSA = 5,24 ; ET = 1,67 ; t = 2,76, p = 0,009).Study 3 – First, the transactional integrative and multifactorial Model (TIM) adapted to parents of children with ASD was tested. Then, different profiles of parents linked to their psychological well-being in face of their child’s disorder were highlighted. It appears that dispositional optimism is an explicative variable of psychological well-being and anxiety and depression appear as mediating variables between dispositional optimism and burden perception. Three profiles of parents were highlighted. One profile of parents (n=63) displays reduced psychological well-being. The second profile (n=29) includes parents who maintained high psychological well-being. The last profile (n=75) is homogenous. Study 4 – This study aims to explore how mothers and fathers of children with ASD live with their child’s disorder. The mean comparisons between fathers and mothers highlight a higher care satisfaction, coordination and respect for mothers. Mothers also have a higher delegated dyadic coping (partner) and common dyadic coping than fathers do. The qualitative analysis revealed that fathers and mothers often do not have the same role with their child.