Gender and burden differences in family caregivers of rare disease patients



Objectives. Gender differences in caregiving may determine social and/or health inequalities
among family caregivers (FCs). This study aimed to analyse gender specific differences    of burden and quality of life (QoL) in FCs belonging to ten different rare diseases (RD).
Methods. Burden levels and QoL data, derived from a sample of 210 FCs of RD patients, were analysed by student t-test, Anova and Kruskal-Wallis followed by multiple comparisons and evaluation of factors, including sex, by correlation and multiple regression analyses.
Results. FCs caring for Prader Willi, X-fragile, mucopolysaccharidosis and epidermolysis
bullosa patients showed significant higher levels of burden as compared to other RDs.
Burden is related to FC’s QoL and can be down modulated by the reduction of the number of hours/week devoted to care and by the improvement of patient’s QoL. No gender-specific burden differences were observed among all FCs. However, female FCs devoted to care significant more numerous hours/week than men and perceived more emotional/physical burden and poorer psychological health than males. Women, who are more frequently early retired from work, not occupied or homemakers than men, suffered more burden as compared to men in the same conditions.
Conclusions. This study showed gender specific differences in RD caregiving, which are important for planning personalized health prevention policies.

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Flavia Chiarotti

Yllka Kodra

Marta De Santis

Maria Bellenghi

Domenica Taruscio

Alessandra Carè

Marina Petrini - Istituto Superiore di sanità

How to Cite
Chiarotti, F., Kodra, Y. ., De Santis, M., Bellenghi, M., Taruscio, D., Carè, A., & Petrini, M. (2023). Gender and burden differences in family caregivers of rare disease patients. Annali dell’Istituto Superiore Di Sanità, 59(2), 122–131.
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