title: The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders.
abstract: In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age=50.4; SD=9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers' experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers.
authors: Department of Pathophysiology and Transplantation, University of Milano, Via F. Sforza, 35, 20146 Milano, Italy. Electronic address: andrea.fianco@unimi.it.
authors: Andrea
authors: A
authors: Fianco
authors: Department of Pathophysiology and Transplantation, University of Milano, Via F. Sforza, 35, 20146 Milano, Italy. Electronic address: raffaela.sartori@unimi.it.
authors: Raffaela D G
authors: RD
authors: Sartori
authors: Department of Pathophysiology and Transplantation, University of Milano, Via F. Sforza, 35, 20146 Milano, Italy. Electronic address: luca.negri@unimi.it.
authors: Luca
authors: L
authors: Negri
authors: IRCCS Fondazione Don Carlo Gnocchi, Centro IRCSS "S. Maria Nascente", Via A. Capecelatro, 66, 20148 Milano, Italy.
authors: Saverio
authors: S
authors: Lorini
authors: IRCCS Fondazione Don Carlo Gnocchi, Centro IRCSS "S. Maria Nascente", Via A. Capecelatro, 66, 20148 Milano, Italy. Electronic address: gvalle@dongnocchi.it.
authors: Giovanni
authors: G
authors: Valle
authors: Department of Pathophysiology and Transplantation, University of Milano, Via F. Sforza, 35, 20146 Milano, Italy. Electronic address: antonella.dellefave@unimi.it.
authors: Antonella
authors: A
authors: Delle Fave
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003072:Cognition Disorders / Q000451:nursing*; D003863:Depression / Q000523:psychology*; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000451:nursing*; D010290:Parents / Q000523:psychology*; D010549:Personal Satisfaction; D055500:Resilience, Psychological; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*; D055815:Young Adult
keywords: Burden; Caregivers; Disability; Resilience; Resources; Satisfaction; Well-being