Foley Geraldine, Timonen Virpi, Hardiman Orla
a Trinity College Dublin and.
b Trinity College Dublin and Beaumont Hospital Dublin , Ireland.
Amyotroph Lateral Scler Frontotemporal Degener. 2016 Jul-Aug;17(5-6):351-7. doi: 10.3109/21678421.2016.1143512. Epub 2016 Feb 9.
Research has shown that family caregivers of ALS patients encounter carer burden. Studies that have investigated the impact of caring on family in ALS have reported predominantly from the family caregiver perspective. We undertook in-depth qualitative interviews with a diverse group of ALS patients (n = 34) sampled from the Irish ALS population-based register and explored their experiences of receiving care from family members and from formal service providers. Interviews were audio recorded and transcribed and data were coded to identify psychosocial processes. Findings showed that patients perceived their care as a burden on family and had concerns about the adverse effects that caring had on family caregivers. However, participants also resisted being a burden on family and they provided emotional support to their family. Participants felt a strong sense of obligation towards family and their concern about family members shaped their expressed preferences for care. We identified that the caring process between ALS patients and their family is often bi-directional, leading in some cases to the patient experiencing carer burden. In conclusion, greater attention in ALS research and practice to patients' supportive roles in family is required to counterbalance the already strong focus on family caregiver burden.
研究表明，肌萎缩侧索硬化症（ALS）患者的家庭护理人员会承受护理负担。调查护理对ALS患者家庭影响的研究主要是从家庭护理人员的角度进行报道的。我们对从爱尔兰基于人群的ALS登记册中抽取的34名不同的ALS患者进行了深入的定性访谈，探讨了他们接受家庭成员和正规服务提供者护理的经历。访谈进行了录音和转录，并对数据进行编码以识别心理社会过程。研究结果表明，患者认为自己的护理是家庭的负担，并担心护理对家庭护理人员产生的不利影响。然而，参与者也抗拒成为家庭的负担，并且他们为家人提供情感支持。参与者对家庭有强烈的责任感，他们对家庭成员的关心塑造了他们表达出的护理偏好。我们发现，ALS患者与其家人之间的护理过程往往是双向的，在某些情况下会导致患者承受护理负担。总之，在ALS研究和实践中，需要更多地关注患者在家庭中的支持作用，以平衡目前对家庭护理人员负担的高度关注。
