Themes and sub-themes from patients’ interviews.

Backgrounds
Caregivers are essential in the care of a patient with digestive cancer. Considering their experience and needs is crucial.
Objectives
To explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers.
Methods
A mixed-methods study with a cross-sectional prospective and a comprehensive qualitative dimension was performed in a medical oncology unit in a French tertiary hospital. Dyads made of patients with digestive cancer and their caregiver were recruited. The Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC) questionnaires were distributed to caregivers. The CRA was used to measure the caregiver burden and the SCNS-PC was used to identify the unmet supportive care needs of caregivers. Semi-structured interviews with the dyads were conducted. Qualitative interviews addressed various dimensions of the caregiver’s experience from each dyad’s member perspective.
Results
Thirty-two caregivers completed the questionnaires. Responses showed high self-esteem, schedule burden, and a need for care and information services. Ten dyads participated in the interviews. Three themes emerged from the caregiver’s interviews: illness is an upheaval; loneliness and helplessness are experienced; caring is a natural role with positive outcomes. Four themes emerged from patient’s interviews: the caregiver naturally assumes the role and gets closer; he is the patient’s anchor; his life is disrupted; anxiety and guilt accompany the desire to protect him. In comparing patient and caregiver data, the main theme of disagreement was their relationship.
Conclusions
Caregiver care does not appear to be optimal, particularly in terms of their need for information. Patients have a fairly good representation of their experience, but the caregivers’ opinion need to be considered.

研究背景
消化道癌症患者的照护者在其诊疗照护中扮演着不可或缺的角色，充分考量其照护体验与实际需求至关重要。

研究目标
本研究旨在探究消化道癌症患者照护者的照护体验，并对比患者与照护者二者的认知视角差异。

研究方法
本研究在法国某三级医院肿瘤内科病房开展，采用结合横断面前瞻性研究与综合定性研究的混合方法研究设计。研究招募消化道癌症患者及其照护者组成配对研究对象，向照护者发放照护反应评估量表（Caregiver Reaction Assessment, CRA）以及伴侣与照护者支持照护需求调查问卷（Supportive Care Needs Survey for Partners and Caregivers, SCNS-PC）：其中CRA用于量化评估照护者的负担程度，SCNS-PC用于明确照护者尚未得到满足的支持照护需求。随后对配对研究对象开展半结构化访谈，定性访谈从配对双方的视角出发，全面覆盖照护者体验的多个维度。

研究结果
共计32名照护者完成了调查问卷，结果显示照护者普遍具有较高的自我认同感，同时承受着日程安排受限带来的沉重负担，且存在对专业照护服务与信息咨询的迫切需求。另有10对配对研究对象参与了访谈：针对照护者的访谈共提炼出3个核心主题，分别为「疾病带来人生剧变」「深陷孤独与无助感」「照护是兼具正向结果的天然职责」；针对患者的访谈则提炼出4个核心主题，分别为「照护者主动承担职责并与患者关系愈发紧密」「照护者是患者的精神支柱」「照护行为彻底打乱了其原本的生活节奏」「在渴望守护患者的同时，内心伴随焦虑与愧疚感」。对比患者与照护者的访谈数据后发现，二者认知分歧的核心主题集中在双方的亲密关系层面。

研究结论
当前消化道癌症患者的照护服务尚未达到最优水平，尤其在信息供给方面未能充分满足照护者的需求。患者对自身诊疗体验的认知较为清晰，但照护者的真实想法仍需得到充分重视与考量。