以IIFAR为基础的信息支持对神经母细胞瘤患儿家属疾病不确定感、心理弹性及正念水平的影响

Influence of IIFAR-based information support on illness uncertainty, resilience and mindfulness in family members of children with neuroblastoma

目的 探讨以IIFAR为基础的信息支持对神经母细胞瘤患儿家属疾病不确定感、心理弹性及正念水平的影响。方法 将2020年1月至2020年10月南京医科大学附属儿童医院收治的54例神经母细胞瘤患儿的家属纳入对照组,2020年11月至2021年8月收治的54例神经母细胞瘤患儿的家属纳入观察组。对照组给予常规的健康教育,观察组给予以IIFAR为基础的信息支持方案。采用疾病不确定感父母量表(PPUS)评估患儿家属的疾病不确定感,心理弹性量表(CD-RISC)评估患儿家属的心理弹性,正念注意觉知量表(MAAS)评估患儿家属的正念水平。比较两组患儿家属疾病不确定感、心理弹性、正念水平以及健康教育满意度。结果 干预后,对照组和观察组患儿家属的疾病不确定感各项评分均降低,且与对照组相比,观察组疾病不确定感更低(P<0.05)。干预后,两组患儿家属的坚韧性、力量、乐观性评分均升高,且与对照组相比,观察组家属的坚韧性、力量、乐观性评分更高(P<0.05)。两组患儿家属干预后的MAAS评分均升高,且与对照组相比,观察组MAAS评分更高(P<0.05)。对照组患儿家属健康教育满意度明显低于观察组(79.63%vs 96.30%)(χ^(2)=7.083,P=0.008)。结论 对神经母细胞瘤患儿家属实施以IIFAR为基础的信息支持能够有效降低患儿家属的疾病不确定感,提高心理弹性及正念水平,且患儿家属健康教育满意度高,有临床推广价值。

Objective To investigate the effect of IIFAR-based information support on illness uncertainty, resilience and mindfulness in family members of children with neuroblastoma. Methods The family members of 54 children with neuroblastoma treated in our hospital from January 2020 to October 2020 were included in the control group, and the family members of 54 children with neuroblastoma treated in our hospital from November 2020 to August 2021 family members were included in the observation group. The control group was given routine health education, and the observation group was given an IIFAR-based information support program. The parents’ perception of uncertainty about illness(PPUS) was used to evaluate the uncertainty of illness in children’s family members, the resilience scale(CD-RISC) used to evaluate the psychological resilience of children’s family members, and the mindfulness-attention awareness scale(MAAS) was used to evaluate the level of mindfulness of family members. The uncertainty of illness, psychological resilience, mindfulness level and health education satisfaction of family members of the two groups were compared. Results After intervention, the scores of illness uncertainty in the family members of the children in the control group and the observation group were decreased, and the scores of illness uncertainty in observation group were lower compared with control group(P<0.05). After intervention,the scores of toughness, strength and optimism of the families of the children in the two groups were increased, and the scores of toughness, strength and optimism of the family members of the observation group were higher compared with control group(P<0.05). The MAAS scores of the families of the children in the two groups were increased after intervention, and the MAAS scores of the observation group were higher compared with control group(P<0.05). The health education satisfaction of the children in the control group was lower compared with observation group(79.63% vs 96.30%)(χ^(2)=7.083, P=0.008).Conclusion Implementing IIFAR-based information support for the families of children with neuroblastoma can effectively reduce the uncertainty of the disease, improve the level of psychological resilience and mindfulness, and have high satisfaction with health education, which has clinical promotion value.