Cancer-related information needs and treatment decision-making experiences of people with dementia in England: a multiple perspective qualitative study
Cancer-related information needs and treatment decision-making experiences of people with dementia in England: a multiple perspective qualitative study
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DOI：
10.1136/bmjopen-2017-020250
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发表时间：
2018-04-01
期刊：
影响因子：
2.9
通讯作者：
Yorke, Janelle
中科院分区：
文献类型：
--
作者：
McWilliams, Lorna;Farrell, Carole;Yorke, Janelle
目的对痴呆症患者的癌症经历和支持需求知之甚少。特别是，目前没有证据证明该患者群体和参与其护理的肿瘤学医疗保健专业人员（HCP）可能存在复杂的决策过程。本研究的目的是探讨癌症相关的信息需求和决策经验的患者与癌症和共病痴呆症，他们的非正式照顾者和肿瘤HCPs.Design横断面定性研究。半结构化访谈进行了面对面的参与者。访谈进行录音和转录前thematic analysis.Setting与癌症和痴呆症的诊断患者，他们的非正式照顾者和参与他们的护理的肿瘤学HCP，都从区域治疗癌症centre.Participants招募有目的的样本10例诊断为癌症-痴呆症的患者，非正式照顾者（n=9）和肿瘤学HCP（n=12）。（1）导致初始咨询-HCP在与患者会面之前需要关于痴呆症的功能影响以及它如何影响癌症治疗选择的更详细信息;（2）传达临床相关信息-依赖非正式护理人员提供患者信息，为患者辩护并支持决策;（3）癌症护理的调整-痴呆症患者在家人的帮助下完成治疗;（4）癌症治疗结束后，有持续的信息需求。肿瘤HCP讨论了他们需要咨询专家在痴呆症护理，以支持treatment decision-making.Conclusions虽然癌症痴呆患者参与他们的治疗决策，非正式的照顾者一般是至关重要的，在支持这一进程。必须在痴呆症预后的背景下考虑与癌症相关的个体患者需求和情况，突出这一人群决策的复杂性。肿瘤学团队应努力让具有痴呆症专业知识的医护人员尽早参与癌症途径。
Objectives Little is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.Design Cross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.Setting Patients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.Participants Purposeful sample of 10 patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).Results Four themes were identified: (1) leading to the initial consultation-HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information-informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care-patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment-there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.Conclusions Although patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.