Lady Davis Institute, Jewish General Hospital, Montreal, QC, Canada.
Department of Psychology, McGill University, Montreal, QC, Canada.
Disabil Rehabil. 2020 Aug;42(16):2304-2310. doi: 10.1080/09638288.2018.1557268. Epub 2019 Jan 29.
To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation = 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers.Implications for rehabilitationMany caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort.Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease.The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences.
为了评估非专业照护者在照顾系统性硬化症（SSc）患者时所面临的不同挑战的重要性，并确定可能需要开发的支持服务的优先级。来自三大洲的 SSc 患者的照护者完成了一份在线问卷，对可能的照护者挑战的重要性和使用不同形式的支持服务的可能性进行评分。挑战的重要性和使用支持服务的可能性从 1（不重要；不太可能使用）到 4（非常重要；非常可能使用）。共有 202 名非专业照护者完成了调查（79 名女性，123 名男性）。平均年龄为 58 岁（标准差=13）。最重要的挑战与支持有情绪和身体不适的照护对象有关。照护者表示，他们更有可能使用涉及在线或印刷信息资源的支持服务，包括在诊断后不久提供的支持服务，而不是与他人互动的支持服务。支持照护对象应对情绪和身体不适是照护者面临的重要挑战。通过硬拷贝或在线资源提供的干预措施，包括在照护对象诊断后不久提供的干预措施，被评为最有可能被照护者使用的干预措施。
康复意义
许多系统性硬化症患者的照护者报告说，他们在支持有情绪和身体不适的照护对象方面遇到了困难。康复专业人员可以帮助开发照护者认为可能会使用的支持服务，并将照护者转介到他们认为有帮助的资源，如关于疾病的教育信息。支持服务的发展应侧重于照护者认为最具挑战性的方面，并以考虑到照护者偏好的格式提供。
