Real experience of caregivers for children with rare diseases: a qualitative study
10.3760/cma.j.cn115682-20230130-00293
- VernacularTitle:罕见病患儿照顾者真实体验的质性研究
- Author:
Guangyan HUO
1
;
Yan ZHAN
Author Information
1. 首都医科大学宣武医院儿科，北京 100053
- Keywords:
Nursing;
Rare diseases;
Caregivers;
Qualitative research
- From:
Chinese Journal of Modern Nursing
2024;30(2):233-237
- CountryChina
- Language:Chinese
-
Abstract:
Objective:To explore the real experience of caregivers for rare disease patients, so as to provide reference for targeted health services.Methods:This study was qualitative. From April 2019 to December 2021, purposive sampling was used to select 14 caregivers of rare disease children hospitalized in the Department of Pediatrics of Xuanwu Hospital of Capital Medical University as the research subject. The data was collected through semi-structured interviews, and analyzed using the Colaizzi 7-step analysis method.Results:The real experience of caregivers for rare disease patients was summarized into five themes, including complex psychological feelings, excessive care burden, fragile family function, desire to obtain disease-related information, and actively facing problems.Conclusions:Caregivers for children with rare diseases bear various burdens in the process of taking care of them. Related staff should provide professional knowledge and skills guidance and psychological counseling to caregivers, help them establish positive coping styles, and reduce their care burden.
