急性白血病患儿照顾者照顾能力的现状调查与分析——基于混合研究视角

Investigation on caring ability of caregivers of children with acute leukemia--based on mixed methods perspective

目的:调查急性白血病患儿照顾者照顾能力现状,探讨其影响因素。方法:采用便利抽样法选取2021年3月至2021年6月在某三甲医院确诊的急性白血病患儿的主要照顾者为研究对象,采用恶性血液病家庭照顾者照顾能力量表进行照顾能力的调查,采用半结构式访谈法对其中10例急性白血病患儿照顾者进行访谈。结果:回收有效问卷117份,照顾能力总分(48.23±16.75)分,平衡照顾需求和个人需求得分(11.29±4.52)分,按需照护技能得分(9.26±3.55)分,情感管理能力得分(7.89±3.28)分,寻求利用支持资源能力得分(7.36±2.96)分,疾病认知能力得分(7.20±2.70)分,基础照顾技能得分(5.24±2.45)分。各维度的影响因素主要包括家庭月收入、性别、年龄、居住地。访谈结果显示,照顾者心理感受复杂、缺乏疾病相关的照顾知识和技能、个人需求缺失、呼吁社会制定相应政策,给予一些补助。结论:急性白血病患儿照顾者照顾能力有待提高,应准确评估照顾者的心理状况及照顾需求,制定有针对性的干预措施,提高其照顾能力,改善患儿生活质量。

Objective:To investigate the caring ability of caregivers of children with acute leukemia,and to analyze its influencing factors.Methods:The convenience sampling method was used to select the main caregivers of children with acute leukemia diagnosed in a grade A tertiary hospital from Mar 2021 to Jun 2021 as the research objects.The hematological malignancies family caregiver skills scale was used to investigate the caring ability.A qualitative study was conducted based on 10 caregivers of children with acute leukemia using semi-structured interviews.Results:A total of 117 effective questionnaires were collected.The total score of care ability was(48.23±16.75),balancing care demands and personal needs score was(11.29±4.52),on-demand care skills score was(9.26±3.55),emotion management ability score was(7.89±3.28),score of ability to use support resources was(7.36±2.96),disease cognition ability score was(7.20±2.70),and basic care skills score was(5.24±2.45).The influencing factors of each dimension included monthly family income,gender,age and residence.The interview results showed that the caregivers had complex psychological experience,and lacked disease-related care knowledge and skills and personal needs.They hoped the society could formulate corresponding policies and provide some subsidies.Conclusios:The caring ability of caregivers of children with acute leukemia needs to be improved.The psychological status and care needs of caregivers should be accurately evaluated,and targeted intervention measures should be formulated to improve their caring ability and the quality of life of children.