Department of Cardiology Children's Hospital of Chongqing Medical University, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Pediatrics, Chongqing, China.
Department of Nursing Children's Hospital of Chongqing Medical University, China.
J Pediatr Nurs. 2023 Nov-Dec;73:e36-e42. doi: 10.1016/j.pedn.2023.07.006. Epub 2023 Jul 20.
To explore the experience of family management among parents of children with chronic heart failure.
Qualitative descriptive phenomenology was used as the research design. The sample included 16 parents. For data collection, semi-structured interviews were conducted. Colaizzi's seven-step analysis method was used for data analysis. Themes were encoded and created with Nvivo 12.0 Plus software.
Three themes and ten sub-themes were identified: (1) weakened family socialization (diminished parental role in social education and insufficient socialization of children), (2) experience of five psychological stages (resistance, self-blame, worry, exhaustion, acceptance), and (3) family management dilemmas (low social awareness of the disease, heavy economic burden, and limited coping style).
The experience of parents of children with chronic heart failure is complex. The children have low socialization and face public prejudice. Parents are stressed by social education, economics, and the five psychological stages they have experienced. Families face difficulties such as heavy economic burdens and limited coping styles.
To address these complexities, pediatric nursing staff should take steps to improve family management and, as a result, children's quality of life. Our study provides a resource for pediatric nursing staff when implementing family management interventions.
探讨慢性心力衰竭患儿父母的家庭管理体验。
采用定性描述现象学研究设计。样本包括 16 名家长。采用半结构式访谈收集数据。使用 Colaizzi 的七步分析法进行数据分析。使用 Nvivo 12.0 Plus 软件对主题进行编码和创建。
确定了三个主题和十个子主题:(1)家庭社会化减弱(父母在社会教育中的角色减弱,孩子的社会化不足);(2)经历五个心理阶段(抵抗、自责、担忧、疲惫、接受);(3)家庭管理困境(疾病的社会认知度低、经济负担重、应对方式有限)。
慢性心力衰竭患儿父母的体验复杂,孩子社会化程度低,面临公众偏见。父母承受着社会教育、经济和所经历的五个心理阶段带来的压力。家庭面临着经济负担重、应对方式有限等困难。
为了解决这些复杂性,儿科护理人员应采取措施改善家庭管理,从而提高儿童的生活质量。本研究为儿科护理人员实施家庭管理干预提供了资源。