Wirral University Teaching Hospital, Wirral, UK.
Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, UK.
Psychooncology. 2024 Oct;33(10):e9308. doi: 10.1002/pon.9308.
PURPOSE: The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice. METHODS: Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual. RESULTS: Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes). CONCLUSION: New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool. IMPLICATIONS FOR CANCER SURVIVORS: With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.
目的:由于大多数支持系统都针对患者,因此头颈部癌症(HNC)患者照顾者的需求往往得不到很好的满足。本系统综述综合了成年 HNC 患者照顾者的现有定性证据,以探讨他们的经验和需求,为 HNC 照顾者的初始开发提供依据,以便在常规临床实践中使用。
方法:从创建之初到 2022 年 11 月,我们在七个电子数据库中进行了搜索,并通过引文链接和滚雪球法进行了补充。纳入了使用访谈法报告 HNC 患者照顾者经历的主要定性或混合方法研究。两名研究人员独立进行了筛选和选择、数据提取和质量评估(批判性评估技巧计划检查表)。使用归纳主题合成法对数据进行分析,并使用 GRADE CERQual 评估置信度。
结果:符合纳入标准的研究有 30 项。出现了两个总体主题和九个子主题:(i)作为照顾者所经历的与失去相关的经历(失去:角色和日常生活、导致情绪困扰的确定性、因复发恐惧而导致的安全感、财务状况、亲密关系和团聚、享受社交活动);以及(ii)促进应对和适应照顾者角色的因素(信息、支持机制、个人属性)。
结论:对 HNC 照顾者的经历的新认识为 HNC 照顾者提示工具的项目生成提供了基础。
对癌症幸存者的影响:由于存在如此多的潜在未满足的需求,因此开发提示清单应该有助于引出这些需求,并提供额外的有针对性的支持手段。
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