Macho P, Bohac M, Fedeles J, Fekiacova D, Fedeles J
Bratisl Lek Listy. 2017;118(6):370-373. doi: 10.4149/BLL_2017_070.
The aim of the study was to evaluate the impact of cleft lip/palate children together with consequent treatment on quality of family life using standardized questionnaire. Different to previous studies the evaluation of quality of family life by questionnaire was realized twice in the same group of families (before the reconstructive surgery and several months after palatoplasty).
The study was conducted in 40 families divided in two groups: 20 families with children with cleft lip (CL), 20 families with children with cleft lip and palate (CLP). The questionnaire of the Impact on Family Scale was used for evaluation of the influence of orofacial clefts on parent´s quality of life. Evaluations were made at the second month of child´s life and at one year of child´s life with reciprocally comparison.
The higher impact of children with CLP on quality of family life was noted at 2 months and 1 year of child's age as compared to the impact of children with CL. The reduction of impact on quality of life after surgical correction was observed in families of children with CL at one year of child's age. This decrease of influence on family quality of life was due to significantly lower impact in strain and economic dimensions in families with CL children after operation. However, in the group of families with CLP children no significant changes in the impact on family quality of life were noted when compared to the values before and shortly after the reconstructive surgery.
This study showed that orofacial clefts in children influence markedly the quality of their family life. The higher impact of children with CLP on quality of family life as compared to children with CL was noted and this impact in CLP group was not influenced shortly after reconstructive surgery. It is suggested that appropriate medical care in Cleft Centre with special psychological support may lead to improvement in quality of life for families with cleft lip and palate children (Tab. 2, Fig. 2, Ref. 14).
本研究旨在使用标准化问卷评估唇腭裂患儿及其后续治疗对家庭生活质量的影响。与以往研究不同的是,在同一组家庭中(重建手术前和腭裂修复术后数月)通过问卷对家庭生活质量进行了两次评估。
该研究在40个家庭中进行,分为两组:20个家庭的孩子患有唇裂(CL),20个家庭的孩子患有唇腭裂(CLP)。使用家庭影响量表问卷来评估口面部裂隙对父母生活质量的影响。在孩子出生后第二个月和一岁时进行评估,并进行相互比较。
与唇裂患儿相比,唇腭裂患儿在2个月和1岁时对家庭生活质量的影响更大。在孩子1岁时,观察到唇裂患儿家庭在手术矫正后对生活质量的影响有所降低。对家庭生活质量影响的这种降低是由于唇裂患儿家庭术后在压力和经济方面的影响显著降低。然而,与重建手术前后的值相比,唇腭裂患儿家庭组对家庭生活质量的影响没有显著变化。
本研究表明,儿童口面部裂隙对其家庭生活质量有显著影响。与唇裂患儿相比,唇腭裂患儿对家庭生活质量的影响更大,并且这种影响在重建手术后不久并未受到影响。建议在腭裂中心提供适当的医疗护理并给予特殊的心理支持,可能会改善唇腭裂患儿家庭的生活质量(表2,图2,参考文献14)。