Care experience of caregivers of children with craniopharyngioma-related hypothalamic obesity: a qualitative study based on the chronic illness trajectory model
10.3760/cma.j.cn211501-20240110-00092
- VernacularTitle:慢性疾病轨迹模式下颅咽管瘤相关下丘脑性肥胖患儿照顾者照护体验的质性研究
- Author:
Weijie WANG
1
;
Yingying DENG
;
Ying REN
;
Jiaying HUANG
;
Jing ZHANG
;
Lei SHI
Author Information
1. 南方医科大学护理学院，广州 510515
- Keywords:
Qualitative research;
Craniopharyngioma;
Hypothalamus obesity;
Caregivers;
Caregiving experience
- From:
Chinese Journal of Practical Nursing
2024;40(23):1774-1780
- CountryChina
- Language:Chinese
-
Abstract:
Objective:To understand the real experience of caregivers of children with craniopharyngioma-associated hypothalamic obesity (CP-HO) based on the chronic disease trajectory model, so as to provide a reference for formulating corresponding disease management plans.Methods:From May 2023 to July 2023, semi-structured interviews were conducted with 17 caregivers of children with CP-HO who were admitted to the Department of Neurosurgery, Nanfang Hospital, Southern Medical University through purposive sampling. The interview data were analyzed by Colaizzi 7-step analysis method.Results:The 17 caregivers of children with CP-HO were 24 to 46 years old, including 3 males and 14 females. A total of 3 themes were extracted. Prodromal phase of weight: lack of disease cognition and weakening of self-concept; during the period of weight increase, the demand burden became prominent and the life pattern changed; weight stability: pressure, hope, and insight into the value of life.Conclusions:For promoting a good disease response of caregivers and improving the weight management effect of children and the quality of family life, medical staff should pay attention to and understand the disease care experience of children with CP-HO, and provide comprehensive and systematic solution strategies.
