Mockford Carole, Jenkinson Crispin, Fitzpatrick Raymond
NHS National Centre for Involvement, University of Warwick, 7 Vanguard Centre, Coventry, UK.
Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):463-9. doi: 10.3109/17482960802455408.
Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's alpha, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers' health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers' support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40-0.66). The development and testing of the MNDCQ indicates that as the carers' score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments' ability to detect change over time.
我们的目标是开发一份经过验证的问卷，用以衡量关怀的各个维度对运动神经元病患者照料者健康的影响程度。最初的190项问卷是通过对照料者进行深入访谈、焦点小组讨论以及两项试点研究编制而成的。对从英国一项大型调查中获得的数据应用因子分析，以确定关怀的潜在维度。使用克朗巴哈系数对新形成的量表进行信度测试，并进行结构效度检验。SF36-v2作为基准工具，通过与之建立相关性来确定与照料者健康的关系。最终开发出一份包含34个条目的问卷，该问卷在六个量表方面展现出了良好的内部信度和效度证据，这六个量表分别为：情绪幸福感、身体幸福感、自我照料、睡眠障碍、照料者的支持需求以及法定服务。研究发现，该问卷与SF-36v2的心理成分得分总结量表具有高度相关性（0.40 - 0.66）。运动神经元病照料者问卷（MNDCQ）的开发与测试表明，随着照料者在MNDCQ上的得分增加，意味着负担水平更高，他们报告健康状况不佳的可能性就越大。还需要进一步开展纵向研究，以进一步检验该问卷检测随时间变化情况的能力。
