Nakken Nienke, Janssen Daisy J A, van den Bogaart Esther H A, Wouters Emiel F M, Franssen Frits M E, Vercoulen Jan H, Spruit Martijn A
Dept of Research and Education, CIRO, Horn, The Netherlands
Dept of Research and Education, CIRO, Horn, The Netherlands Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
Eur Respir Rev. 2015 Sep;24(137):498-504. doi: 10.1183/16000617.00010114.
The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status.
慢性阻塞性肺疾病(COPD)给社会带来的负担正在增加。医疗保健系统应支持慢性阻塞性肺疾病患者实现最佳生活质量,同时限制护理成本。因此,从医院护理转向家庭护理似乎不可避免。因此,患者将不得不更大程度地依赖非正式护理人员。慢性阻塞性肺疾病患者及其非正式护理人员在日常生活活动中面临多种限制。非正式护理人员的存在对于提供实际帮助和情感支持很重要。然而,护理人员可能会过度保护,这可能会使患者更加依赖。非正式护理可能会导致焦虑、抑郁、社会孤立等症状以及与患者关系的改变。护理人员的主观负担是护理影响的主要决定因素。因此,护理人员对患者健康的认知是一个重要因素。本文综述了目前关于慢性阻塞性肺疾病患者这些非正式护理人员的知识、慢性阻塞性肺疾病对他们生活的影响以及他们对患者健康状况的认知。