von Gontard A, Rudnik-Schöneborn S, Zerres K
Klinik für Kinder- und Jugendpsychiatrie und Psychotherapie, Universitätsklinikum des Saarlandes, Homburg, Germany.
Klin Padiatr. 2012 Jul;224(4):247-51. doi: 10.1055/s-0032-1304577. Epub 2012 Apr 13.
Chronic illness and disability is not only associated with higher rates of behavioural problems in children, but also parental stress which requires active coping. The aim of the study was to analyse stress and coping, as well as their mediating variables, in parents of children and adolescents with Spinal Muscular Atrophy (SMA).
96 children and adolescents with SMA aged 6;0 to 18;11 years were compared to 59 age, sex and SES matched controls.
Parental stress was measured with the QRS, coping with the F-COPES and social support with the F-SOZU questionnaires.Parental stress was significantly higher in the SMA families for the total score and all subscales of the QRS. Stress was higher in families with severely affected SMA types I and II. The greatest percentage of variance contributing to stress could be explained by lack of social support, degree of disability and behavioural problems in the child. Although social support was reduced, the actual coping abilities of the families did not differ.
Families with children and adolescents with SMA show high degrees of stress and strain which are associated with the severity of the disease, reduced social support and child behaviour. Despite these stresses they manage and cope no differently from families with healthy children.
慢性病和残疾不仅与儿童行为问题发生率较高有关，还与需要积极应对的父母压力有关。本研究的目的是分析脊髓性肌萎缩症（SMA）患儿和青少年父母的压力与应对方式及其中介变量。
将96名年龄在6岁0个月至18岁11个月的SMA患儿和青少年与59名年龄、性别和社会经济地位相匹配的对照组进行比较。
采用QRS量表测量父母压力，F-COPES量表测量应对方式，F-SOZU问卷测量社会支持。SMA家庭在QRS总分及所有子量表上的父母压力显著更高。I型和II型严重受影响的SMA家庭压力更高。导致压力的最大方差百分比可由社会支持不足、残疾程度和儿童行为问题来解释。尽管社会支持减少，但家庭的实际应对能力并无差异。
SMA患儿和青少年家庭表现出高度的压力和紧张，这与疾病的严重程度、社会支持减少和儿童行为有关。尽管存在这些压力，但他们的应对方式与健康儿童家庭并无不同。
