1. Objectifs

Intentions :
«This research paper aims to [explore] the significance of the intersection of culture and social inclusion/exclusion in a group of PWDs [persons with dementia] and caregivers. More specifically, it focuses on how culture influences the moments, situations and places in which these persons experienced social inclusion/exclusion.» (p. 829)

2. Méthode

Échantillon/Matériau :
The study was conducted «in a non-profit organization that provides services for PWDs and their caregivers in culturally diverse neighborhood of a major Canadian city. […] Ethnographic methods, including participant observation and ethnographic interviews, were used in a sample of individuals (n=49) who were recruited through purposive sampling […]. Additionally, core participants (n=12) were followed through their everyday routines at the organization to further understand their experience of situations and moments of inclusion and exclusion. Visits to the field occurred between one and four times per week and lasted between four and eight hours per day, for a total of approximately 220 hours of observation.» (p. 829-830)
Instruments :
- Guide d’entretien semi-directif
- Grille d’observation

Type de traitement des données :
Analyse de contenu

3. Résumé

«Although [the] participants reported overwhelming difficulties and responsibilities associated with caring for PWDs, none considered it as a burden. Italian, Caribbean and Jewish caregivers all described their cultures as “family-oriented” and reported a sense of personal fulfillment for being able to give back to their loved ones. These results contrast with the findings of studies in other family-oriented cultural groups, where tensions arising from the coexistence of traditional filial mandates and modern transformations of family structures […] cause stress and burden for the caregivers […]. Despite the fact that most PWDs in this study were cared for by only a few members of their nuclear families […], it is possible that these caregivers’ extensive use of external resources for dementia care – in particular among Jews – had protected them from experiencing their caregiver role as a burden. […] In addition, [the] results suggest diverse and contrasting experiences of social inclusion and exclusion between cultural communities. On the one hand, participants of Jewish origin reported having access to a comprehensive network of social and health institutions that they consider socially inclusive. […] On the other hand, Italian and Caribbean carers stated that stigma towards and lack of understanding of dementia were common in their cultural communities, creating tensions against the ingrained mandate of caring for the elderly and the expectation of inclusion.» (p. 837-838)