Cañedo-Ayala Mara, Rice Danielle B, Levis Brooke, Carrier Marie-Eve, Cumin Julie, Malcarne Vanessa L, Hagedoorn Mariët, Thombs Brett D
Lady Davis Institute of the Jewish General Hospital, Montreal, Canada.
Department of Psychology, McGill University, Montreal, Canada.
Disabil Rehabil. 2020 Feb;42(3):394-399. doi: 10.1080/09638288.2018.1500647. Epub 2018 Aug 19.
Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons with systemic sclerosis (also known scleroderma).as A questionnaire was developed and administered online from December 2016 to June 2017 to informal caregivers of people with scleroderma, including the Patient Health Questionnaire-9 to assess depressive symptoms. Multiple linear regression was used to identify factors associated with depressive symptoms. Caregivers ( = 202) were 60.9% male. Average age was 57.2 years (standard deviation = 14.4 years). Most caregivers were partners (72.3%), children (11.9%), or parents (7.4%), of care recipients. Self-reported caregiving burden (standardized regression coefficient [Formula: see text] = 0.54, < 0.001) and hours of care per week ([Formula: see text] = 0.17, = 0.005) were significantly associated with greater symptoms of depression. Depressive symptoms were primarily associated with caregiving burden among a sample of scleroderma caregivers. There is need to develop interventions targeting caregivers in scleroderma. Rehabilitation professionals should consider the specific needs of scleroderma caregivers and should provide or refer to support services as appropriate.Implications for RehabilitationMost people diagnosed with scleroderma are cared for by an informal caregiver and the majority of these caregivers experience mild symptoms of depression.For caregivers that experience moderate to severe symptoms of depression, the ability to provide care to a loved one with scleroderma may be more difficult.Rehabilitation professionals should be aware of the burden faced by caregivers of persons with scleroderma and provide support services or referrals as appropriate.
我们的研究旨在确定与系统性硬化症（又称硬皮病）患者的非正式照料者抑郁症状相关的照料者特征（性别、年龄、职业状况、教育程度、与受照料者的关系）、受照料者特征（年龄、疾病亚型）以及照料因素（照料时长、感知到的照料负担）。2016年12月至2017年6月，我们编制了一份问卷并在线发放给硬皮病患者的非正式照料者，其中包括用于评估抑郁症状的患者健康问卷-9。我们使用多元线性回归来确定与抑郁症状相关的因素。照料者（n = 202）中男性占60.9%。平均年龄为57.2岁（标准差 = 14.4岁）。大多数照料者是受照料者的配偶（72.3%）、子女（11.9%）或父母（7.4%）。自我报告的照料负担（标准化回归系数β = 0.54，P < 0.001）和每周照料时长（β = 0.17，P = 0.005）与更严重的抑郁症状显著相关。在硬皮病照料者样本中，抑郁症状主要与照料负担相关。有必要针对硬皮病照料者制定干预措施。康复专业人员应考虑硬皮病照料者的特殊需求，并应酌情提供或推荐支持服务。
康复启示
大多数被诊断为硬皮病的患者由非正式照料者照顾，这些照料者中的大多数都有轻度抑郁症状。
对于那些有中度至重度抑郁症状的照料者来说，照顾患有硬皮病的亲人可能会更加困难。
康复专业人员应意识到硬皮病患者照料者所面临的负担，并酌情提供支持服务或转介。
