背景:有效症状管理的概念模型以前是通过对在英国收容所工作的多学科医疗保健专业人员(HCP)的访谈而开发的。在这里,我们旨在回答以下问题:HCP数据衍生模型是否代表晚期癌症患者和护理人员的经验?
方法:对6名晚期癌症患者和6名护理人员进行了半结构化访谈,以深入了解他们的症状管理经验。分析基于框架方法;转录,熟悉程度,编码,应用分析框架(概念模型),绘制图表,解释。归纳框架分析用于将数据与现有模型中的主题对齐。还使用了演绎方法来确定新主题。
结果:患者和护理人员的体验与参与的关键步骤相一致,决策,基于HCP的模型中的伙伴关系和交付。数据与23个主题中的18个保持一致。这些是;角色定义和界限,多学科团队决策,服务/工作人员的可用性,临床医师与患者的关系/融洽,患者偏好,患者特征,生活质量与治疗需求的关系,员工时间/负担,心理支持-非正式,适当的理解,期望,接受和目标-患者,适当的理解,期望,接受和目标-HCPs,适当的理解,期望,接受和目标-家庭朋友,看护者,专业,服务和转介因素,持续的护理,多学科团队合作,姑息治疗哲学和文化,物理环境和设施,转诊过程和延误。确定了另外四个患者和护理人员衍生的主题:护理人员负担,Communication,药品管理和COVID-19。不一致的建筑是(员工的)经验,培训(工作人员),指导方针和证据,心理支持(对工作人员)和正式心理支持(对患者)。
结论:基于医疗保健专业的有效症状管理概念模型与晚期癌症患者及其护理人员的经验非常吻合。鉴定了其他域。我们对这项研究带来的变化提出了四点建议。对照顾者负担的常规评估和确认,医学管理任务和以前的医疗保健角色经验;改善了员工沟通技能培训的机会,并审查了患者的沟通需求。进一步的研究应该探索独居者的症状管理经验,以及如何更好地支持这些人。
BACKGROUND: A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer?
METHODS: Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes.
RESULTS: The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients).
CONCLUSIONS: A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.