Summary :
Background. Social isolation is a major health issue, affecting nearly one in six people (WHO, 2025), with direct impacts on physical and mental health (Holt-Lunstad et al., 2015). Spousal caregivers of individuals with progressive neurodegenerative disease are among the most vulnerable populations in this regard, as the growing burden of the caregiving role drastically reduces their social participation (Li, 2023).
Objective. This study aims to examine how the social participation of spousal caregivers evolves in relation to the disease progression.
Method. A netnographie allowed the observation and analysis of testimonies of collaborating spousal caregivers published on forums and social networks. A corpus of thirty testimonies from spousal caregivers was collected. The data were analysed thematically.
Results. Four themes have been identified: the reduction of social participation, caregiver burnout, the weakening of the couple relationship and coping strategies. The analysis highlighted a gradual deterioration in the social participation of spousal caregivers.
Conclusion. As the disease progresses, spousal caregivers experience a gradual reduction in their social interactions and meaningful social activities.
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Article rédigé par :
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Marie Le Roch
Ergothérapeute DE
marie.leroch23@gmail.com
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Marielle André
Ergothérapeute DE, PhD
Univ Rennes, CHU Rennes,
Living Lab Vieillissement et vulnérabilités (service de gériatrie), Rennes, France
Centre de recherche sur le Vieillissement, Université de Sherbrooke, Sherbrooke, Canada
marielle.andre@univ-rennes2.fr