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
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女,硕士在读,学生

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2022年浙江省爱在延长炎症性肠病基金会青峰科研资助项目(CCCF-QF-2022B78-6)


The lived experience and needs of family caregivers caring for adolescents with inflammatory bowel disease:a qualitative study
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    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 inflammatory bowel disease (IBD),and to provide a reference for development of health education strategies in clinical settings for IBD families. 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 systems (reliance on family support, family solidarity, refusal to be "specially treated" by society), perceived positive changes (adaptation to caregiver roles, reordering of life priorities, adjustment of life style behaviors). Conclusion Family caregivers of IBD adolescent 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-support 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.

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李静依,缪群芳,陈焰,祝览铭,胡婷婷,朱力,杨路路.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[J].护理学杂志,2024,39(8):54-58

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  • 收稿日期:2023-11-15
  • 最后修改日期:2024-01-07
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  • 在线发布日期: 2024-07-27