West C A, Besier T, Borth-Bruhns T, Goldbeck L
Nachsorgeklinik Tannheim, Rehabilitationsklinik, VS-Tannheim, Germany.
Klin Padiatr. 2009 Jul-Aug;221(4):241-6. doi: 10.1055/s-0029-1216364. Epub 2009 Jul 23.
Parents of chronically ill children face numerous burdens in daily life, which can impair their quality of life (QoL) significantly. Therefore in family-oriented rehabilitation, not only the children themselves, but also their parents receive interventions. These aim at stabilizing parents both mentally and physically to enable them to support their children in the best possible way. This study investigates the effects of an inpatient family-oriented rehabilitation program on the QoL of parents of chronically ill children.
A consecutive sample of 231 mothers and 155 fathers of children suffering from cancer, cardiac diseases or cystic fibrosis participated in the study.
In a prospective longitudinal study, parental QoL was repeatedly assessed using the Ulm Quality of Life Inventory for Parents (ULQIE) at three different time points: admission to the rehabilitation clinic, discharge after four weeks of inpatient treatment, and at a six-month follow-up.
Parental QoL increased markedly during rehabilitation treatment (mothers eta (2)=.326, fathers eta (2)=.249). Moreover, six months after the intervention, parental quality of life was still markedly improved compared to baseline assessment (mothers eta (2)=.259, fathers eta (2)=.069). The child's diagnosis had no effect on the level and course of parental QoL.
Taking part in family-oriented rehabilitation can improve the QoL of parents of children suffering from cancer, cardiac diseases or cystic fibrosis. Such programs could be expected to affect the way chronically ill children cope with their condition and this should be examined in future studies.
慢性病患儿的父母在日常生活中面临诸多负担,这会显著损害他们的生活质量(QoL)。因此,在以家庭为导向的康复治疗中,不仅患儿自身,其父母也会接受干预。这些干预旨在使父母在心理和身体上都保持稳定,以便他们能够以最佳方式支持自己的孩子。本研究调查了住院式家庭导向康复项目对慢性病患儿父母生活质量的影响。
连续抽取了231名患癌症、心脏病或囊性纤维化患儿的母亲和155名父亲参与本研究。
在一项前瞻性纵向研究中,使用乌尔姆父母生活质量量表(ULQIE)在三个不同时间点对父母的生活质量进行反复评估:进入康复诊所时、住院治疗四周后出院时以及六个月随访时。
在康复治疗期间,父母的生活质量显著提高(母亲η² =.326,父亲η² =.249)。此外,干预六个月后,与基线评估相比,父母的生活质量仍有显著改善(母亲η² =.259,父亲η² =.069)。孩子的诊断对父母生活质量的水平和变化过程没有影响。
参与家庭导向的康复治疗可以提高患癌症、心脏病或囊性纤维化患儿父母的生活质量。可以预期此类项目会影响慢性病患儿应对自身疾病的方式,这一点应在未来研究中加以考察。