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Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study.
Supportive Care in Cancer ( IF 2.8 ) Pub Date : 2021-09-22 , DOI: 10.1007/s00520-021-06569-z
Stephanie White 1 , Jane Phillips 2, 3 , Erin Turbitt 1 , Chris Jacobs 1
Affiliation  

PURPOSE A proportion of people with palliative care needs unknowingly have a genetic predisposition to their disease, placing relatives at increased risk. As end-of-life nears, the opportunity to address genetics for the benefit of their family narrows. Clinicians face numerous barriers addressing genetic issues, but there is limited evidence from the palliative care clinician perspective. Our aims are to (1) explore the views and experiences of palliative care clinicians in addressing genetics with patients and their families and (2) generate suggested strategies that support integration of genetics into palliative care. METHODS An interpretive descriptive qualitative study using semi-structured interviews with palliative care doctors and nurses (N = 14). RESULTS Three themes were identified: (1) Harms and benefits of raising genetics: a delicate balancing act, (2) Navigating genetic responsibility within the scope of palliative care and (3) Overcoming practice barriers: a multipronged approach. Participants described balancing the benefits of addressing genetics in palliative care against potential harms. Responsibility to address genetic issues depends on perceptions of relevance and the scope of palliative care. Suggestions to overcome practice barriers included building genetic-palliative care relationships and multi-layered genetics education, developing clinical resources and increasing organisational support. CONCLUSIONS Integrating aspects of genetics is feasible, but must be balanced against potential harms and benefits. Palliative care clinicians were uncertain about their responsibility to navigate these complex issues to address genetics. There are opportunities to overcome barriers and tailor support to ensure people nearing end-of-life have a chance to address genetic issues for the benefit of their families.

中文翻译:

姑息治疗临床医生与个人和家庭解决遗传学问题的观点和经验:一项定性研究。

目的 有一部分需要姑息治疗的人在不知不觉中具有遗传易感性,从而使亲属面临更高的风险。随着生命终结的临近,为家人的利益解决遗传学问题的机会越来越少。临床医生在解决遗传问题方面面临许多障碍,但从姑息治疗临床医生的角度来看,证据有限。我们的目标是 (1) 探讨姑息治疗临床医生在与患者及其家属解决遗传学问题方面的观点和经验,以及 (2) 提出支持将遗传学整合到姑息治疗中的建议策略。方法 对姑息治疗医生和护士(N = 14)进行半结构化访谈的解释性描述性定性研究。结果 确定了三个主题:(1)提高遗传学的危害和益处:一个微妙的平衡行为,(2)在姑息治疗范围内导航遗传责任和(3)克服实践障碍:多管齐下的方法。参与者描述了在姑息治疗中解决遗传学问题与潜在危害之间的平衡。解决遗传问题的责任取决于对相关性的看法和姑息治疗的范围。克服实践障碍的建议包括建立基因姑息治疗关系和多层次的遗传学教育、开发临床资源和增加组织支持。结论 整合遗传学的各个方面是可行的,但必须平衡潜在的危害和益处。姑息治疗临床医生不确定他们有责任解决这些复杂问题以解决遗传学问题。
更新日期:2021-09-22
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