Centro di Riferimento Scienze Comportamentali e Salute Mentale, Istituto Superiore di Sanità, Rome, Italy.
Centro Nazionale Malattie Rare, Istituto Superiore di Sanità, Rome, Italy.
Ann Ist Super Sanita. 2023 Apr-Jun;59(2):122-131. doi: 10.4415/ANN_23_02_05.
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).
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.
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.
This study showed gender specific differences in RD caregiving, which are important for planning personalized health prevention policies.
照料者的性别差异可能决定了家庭照料者（FCs）之间的社会和/或健康不平等。本研究旨在分析属于十种不同罕见病（RD）的 FCs 的负担和生活质量（QoL）的性别特异性差异。
通过学生 t 检验、方差分析和 Kruskal-Wallis 检验，对来自 210 名 RD 患者 FCs 的负担水平和 QoL 数据进行了分析，并对包括性别在内的因素进行了相关性和多元回归分析。
与其他 RD 相比，照顾普拉德威利、X 脆性、黏多糖贮积症和大疱性表皮松解症患者的 FCs 显示出明显更高的负担水平。负担与 FC 的 QoL 有关，通过减少每周用于护理的时间/小时和改善患者的 QoL 可以减轻负担。在所有 FCs 中未观察到性别特异性的负担差异。然而，女性 FCs 每周用于护理的时间/小时明显多于男性，并且与男性相比，她们感受到更多的情绪/身体负担和较差的心理健康。与男性相比，那些更早退休、未就业或家庭主妇的女性，在相同的情况下，负担更重。
本研究表明 RD 照料中存在性别特异性差异，这对于制定个性化的健康预防政策很重要。
