重型β-地中海贫血患儿照顾者照护感受与需求的质性研究

Qualitative research on caregiving feelings and needs of caregivers of children withβ-thalassemia major

目的探讨重型β-地中海贫血(简称重型β-地贫)患儿照顾者的照顾感受与需求。方法对2022年12月—2023年3月在右江民族医学院附属医院进行治疗的14名重型β-地贫患儿照顾者进行半结构式访谈,采用Colaizzi 7步分析法分析资料。结果重型β-地贫患儿照顾者照护感受为承受较大照护负担,包括身心健康状况下降、日常生活节奏紊乱、经济负担沉重;照护需求包括心理情感支持需求、患儿身心健康指导需求、确保稳定血源需求、医疗与社会支持需求。结论重型β-地贫患儿照顾者照护负担较重,在日常照护患儿过程中面临多方面照护困境,医务人员应积极采取措施满足其照护需求,提高其照护质量与生活质量。

Objective To explore the caregiving feelings and needs of caregivers of children withβ-thalassemia major.Methods A semi-structured interview was conducted with 14 caregivers of children withβ-thalassemia major who were treated at the Affiliated Hospital of Youjiang Medical University for Nationalities from December 2022 to March 2023,and the data were analyzed using the Colaizzi 7-step analysis method.Results Caregivers of children withβ-thalassemia major felt a greater burden of care,including declining physical and mental health,disruption of daily life rhythms and heavy financial burden.And their caregiving needs included psychological and emotional support,guidance on the physical and mental health of children,assurance of a stable blood supply and medical and social support.Conclusions Caregivers of children withβ-thalassemia major have a heavy burden of care and face various nursing difficulties in the daily care of children.Medical staff should actively take measures to meet their care needs and improve their care quality and quality of life.