背景:支持的自我管理可以改善癌症患者的临床和社会心理结果;对于通常具有复杂支持需求的低度神经胶质瘤(LGG)患者实施自我管理支持(SMS)所需的考虑因素尚不清楚。我们旨在通过规范化过程理论(NPT)的镜头来识别和理解这些实施考虑因素,从医疗保健专业人员(HCP)和LGG患者的角度来看。
方法:我们对支持成人脑肿瘤的HCP进行了半结构化访谈(n=25;12个不同的医疗保健专业),以及完成主要治疗的LGG患者(n=28;男性n=16,平均年龄54.6岁,自诊断以来的平均时间8.7年),来自英国各地。对访谈进行转录和归纳开放编码,在演绎映射到NPT的结构之前。我们首先绘制了HCP数据,然后整合来自LGG人员的数据,以探索经验和观点的一致性。
结果:我们为所有四个NPT结构和相关子结构生成了支持证据,即:\'一致性\',\'认知参与\',\'集体行动\'和\'自反监控\'。来自HCP和LGG患者的数据清楚地表明,有效的SMS构成了集体活动。关键的实施考虑因素包括:确保意识到,和访问,支持;建立牢固的HCP支持收件人关系;并谨慎地纳入亲密的家人和朋友。我们确定了相关的挑战,例如确定支持需求(受LGG人员参与寻求帮助的程度影响),对支撑的阻力(例如,技术素养),HCP和HCP合作培训。
结论:这项研究表明,并提供对个人角色的洞察,支持自我管理。我们概述了操作的考虑因素,维持和评估LGG人群SMS的实施情况。
■脑肿瘤患者,和非正式的照顾者,参与了信息材料和主题指南的开发,以确保可访问性和针对性。他们也有机会对采访结果发表评论。
BACKGROUND: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG.
METHODS: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives.
RESULTS: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: \'Coherence\', \'Cognitive participation\', \'Collective action\' and \'Reflexive monitoring\'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation.
CONCLUSIONS: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG.
UNASSIGNED: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.