Nurse, Ph.D. in Nursing, Titular Professor of Federal University of Santa Maria, Nursing Department, 1000 Roraima Avenue, Building 26, Office Room 1306, Camobi, Santa Maria, RS 97105-900, Brazil.
Nurse, Ph.D. in Nursing, Federal University of Santa Maria, Nursing Department, 1000 Roraima Avenue, Building 26, Office Room 1306, Santa Maria, RS 97105-900, Brazil.
J Pediatr Nurs. 2023 Nov-Dec;73:e83-e92. doi: 10.1016/j.pedn.2023.07.017. Epub 2023 Aug 16.
To examine the quality of life of children who depend on health technologies as expressed in their own words.
A parallel and convergent mixed methods design was employed with 30 aged five to 12 year old children who depend on health technologies. Data collection was done through a characterization form, Pediatric Quality of Life Inventory 4.0 questionnaire with the total sample in quantitative phase; semi-structured interviews with a subset of nine participants in qualitative phase. Quantitative and qualitative data were analyzed using descriptive statistics and deductive thematic content analyses, respectively.
Findings from PedsQL 4.0 showed that quality of life for children who depend on health technologies is average. However, data integration through mixed methods showed that this average goes beyond quantitative data through hearing the children's own voices. The results from data integration pointed out that children recognize their limitations and adapt to them; what most affects their quality of life is the emotional domain; children reported suffering prejudice due to their physical limitations; and that the school positively impacts their quality of life.
Data integration highlighted that children acknowledge their limitations and pain generated by these devices. Concerns about the future and the ability to do things that other children the same age can do was the most impactful aspect on their quality of life.
Nursing care plans should consider that what affects most children who depend on health technologies' quality of life is anxiety for the future of being incapacitated or dependent.
用儿童自己的语言来检验依赖健康技术的儿童的生活质量。
采用平行和汇聚混合方法设计，纳入 30 名年龄在 5 至 12 岁之间依赖健康技术的儿童。通过特征描述表、儿科生活质量量表 4.0 问卷进行定量阶段的资料收集；对 9 名参与者进行半结构化访谈，进行定性阶段的资料收集。使用描述性统计和演绎主题内容分析分别对定量和定性数据进行分析。
PedsQL 4.0 的结果显示，依赖健康技术的儿童的生活质量处于平均水平。然而，通过混合方法进行数据整合表明，通过听取儿童自己的声音，这种平均水平超越了定量数据。数据整合的结果指出，儿童认识到自己的局限性并适应了这些局限性；对他们生活质量影响最大的是情感领域；儿童报告因身体限制而遭受偏见；学校对他们的生活质量有积极影响。
数据整合强调，儿童承认他们的局限性和这些设备带来的痛苦。对未来的担忧和无法完成同龄儿童能够完成的事情的能力，是对他们生活质量影响最大的方面。
护理计划应考虑到影响依赖健康技术的大多数儿童生活质量的最主要因素是对未来残疾或依赖的焦虑。
