青少年炎症性肠病患者家庭照顾者照护体验及需求的质性研究
The lived experience and needs of family caregivers caring for adolescents with in-flammatory bowel disease:a qualitative study
李静依 1缪群芳 2陈焰 3祝览铭 4胡婷婷 1朱力 1杨路路1
作者信息
- 1. 杭州师范大学护理学院(浙江杭州,311121);杭州师范大学附属医院
- 2. 杭州师范大学附属医院临床医学院
- 3. 浙江大学医学院附属第二医院消化科
- 4. 杭州师范大学附属医院消化内科
- 折叠
摘要
目的 深入了解青少年炎症性肠病患者家庭照顾者的照护体验及需求,为临床制定针对炎症性肠病家庭健康教育策略提供参考.方法 采用 目的抽样法,于2023年7月选取青少年炎症性肠病患者家庭照顾者16名,以现象学研究方法对其进行半结构式访谈收集资料,应用Colaizzi现象学7步分析法归纳分析并提炼主题.结果 共提炼出5个主题和14个亚主题,即承受复杂的心理负担(不相信和不接受、担忧和焦虑、自责和愧疚),面临沉重的家庭照护负担(家庭经济陷入困境、家庭氛围紧张、家庭生活节奏打乱),需要充足的内部知识储备(提升疾病相关知识、沟通能力),需要完善的外部支持系统(依赖家庭的支持、相同经历的家庭抱团取暖、拒绝被社会"特殊化"),感知的积极变化(适应照顾者角色、人生要素重新排序、生活行为调整).结论 青少年炎症性肠病患者家庭照顾者存在复杂的心理体验和沉重的照护负担,医护人员应重视照顾者心理负担,加强疾病相关知识、技能的宣教,并联合家庭和社会多支持系统,帮助照顾者识别积极的照护体验,从而改善其心理状态,减轻照护负担,提升照护质量.
Abstract
Objective To deeply understand the lived experience and needs of family caregivers caring for adolescents with inflamma-tory bowel disease(IBD),and to provide a reference for development of health education strategies in clinical settings for IBD fami-lies.Methods Purposive sampling method was used to select 16 family caregivers of IBD adolescents in July 2023.The participants were interviewed in a semi-structured approach,and the interview data were collected using phenomenological research methodology.Then themes were distilled by applying Colaizzi's 7-step phenomenological analysis.Results A total of 5 themes and 14 sub-themes were extracted,namely,complex psychological burdens(disbelief and non-acceptance,worry and anxiety,self-blame and guilt),heavy family caregiving burdens(family financial difficulties,family tension,disruption of family life),adequate internal knowledge base(enhancement of disease-related knowledge,communication skills),well-developed external support sys-tems(reliance on family support,family solidarity,refusal to be"specially treated"by society),perceived positive changes(adap-tation to caregiver roles,reordering of life priorities,adjustment of life style behaviors).Conclusion Family caregivers of IBD ado-lescent have complex psychological experiences and heavy caregiving burdens.Healthcare professionals should pay attention to caregivers psychological burdens,strengthen disease-related knowledge and skills education,and unite family and social multi-sup-port systems to help caregivers foster positive caregiving experiences,so as to improve their psychological status,reduce their caregiving burdens,and enhance the quality of caregiving.
关键词
青少年/炎症性肠病/家庭照顾者/照护负担/照护体验/照护技能/支持系统/质性研究Key words
adolescent/inflammatory bowel disease/family caregivers/caregiving burden/caregiving experience/caregiving skills/support system/qualitative research引用本文复制引用
基金项目
浙江省爱在延长炎症性肠病基金会青峰科研项目(2022)(CCCF-QF-2022B78-6)
出版年
2024
NETL
NSTL
万方数据