Department of Rehabilitation Medicine and Physical Therapy, ErasmusMC, University Medical Centre Rotterdam, Rotterdam, the Netherlands.
Disabil Rehabil. 2012;34(12):988-96. doi: 10.3109/09638288.2011.628738. Epub 2011 Dec 9.
To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden.
In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored.
Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%-36% of variance. Living situation was not associated with experienced burden.
Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood.
描述成年期杜氏肌营养不良症（DMD）患者父母的主观照护者负担，并确定与主观负担水平相关的因素。
在一项 80 名成年、严重残疾的 DMD 患者的 57 名父母的横断面研究中，使用照顾者负担量表（CSI）和自我评估负担量表来衡量主观照顾者负担的水平。使用视觉模拟量表来衡量幸福感。使用扩展的 CSI 版本、照顾者 QoL 和开放性问题来更深入地分析照护情况。在单变量和多变量分析中，探讨了客观照护特征、患者特征和照顾者特征与负担的关联。
父母表示负担沉重，但认为照顾是重要且有价值的。主观负担与接受的支持、气管切开术、患者的积极应对以及患者和父母的焦虑有关，共同解释了 34%-36%的变异。居住状况与体验到的负担无关。
照顾成年期患有 DMD 的儿子是有负担的，但也是有回报的。父母的主观照顾者负担可以通过充分的支持和暂息护理、避免气管切开术以及针对焦虑的干预计划和促进患者的积极应对来缓解，这些计划应从儿童时期开始实施。
