Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers.
Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers.
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DOI：
10.1016/j.jpainsymman.2021.11.007
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发表时间：
2022-04
影响因子：
4.7
通讯作者：
Abshire Saylor M
中科院分区：
文献类型：
--
作者：
Suen JJ;Vo E;Clair CA;Nolan MT;Gallo JJ;Abshire Saylor M
即使病人是一名医生，病人和家庭照顾者在生命末期对护理负担的看法也不同。我们描述了作为潜在患者的老年医生(以下称为“医生-患者”)和医生-患者的家庭照顾者如何看待生命末期的护理负担。作为共同决策研究的一部分，对去世的内科患者(N=28)和家属照顾者(N=26)进行了访谈。这两组人都表达了对生命末期负担的担忧。我们使用归纳和演绎的方法对负担的描述进行编码和分析，以编码子主题，就像定性描述一样。然后，我们创建了一个概念模型，描述了概念之间的关系，返回访谈以验证各自的上下文。两组在疾病轨迹的不同点采取的单边行动表明，对平行发生的负担有不同的担忧。虽然每个人都预料到与生命末期护理相关的负担，但医生和患者做出了法律和经济安排，以最大限度地减少这种负担。然而，几名家庭照顾者描述了他们所经历的负担。我们提出了一个概念模型来指导未来的研究和护理。医生-患者的临床洞察力推动了他们减轻家庭负担的尝试。然而，家庭照顾者仍然承受着负担。认识到负担的平行观点可能会为干预的类型和时机提供信息，从而有效地将负担降至最低，并在生命末期为患者和家属提供体恤关怀。
Patients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican.. We describe how older adult physicians as prospective patients (hereafter “physician-patients”) and family caregivers of physician-patients view burden in care at the end of life. Interviews with physician-patients (N=28) and family caregivers (N=26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts. Unilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care. Physician-Patients ‘ clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.
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影响因子：
3.1
作者：
Holtslander, Lorraine;Baxter, Sharon;Peacock, Shelley
通讯作者：
Peacock, Shelley
影响因子：
3.6
作者：
Tang, Siew Tzuh;Hsieh, Chia-Hsun;Hou, Ming-Mo
通讯作者：
Hou, Ming-Mo
影响因子：
14.6
作者：
Heyland, DK;Dodek, P;Lam, M
通讯作者：
Lam, M
影响因子：
3
作者：
Cousineau, N;McDowell, I;Hébert, P
通讯作者：
Hébert, P
DOI：
10.1097/01.njh.0000289656.91880.f2
发表时间：
2007-09-01
期刊：
Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association
影响因子：
--
作者：
Johnson, Julia Overturf;Sulmasy, Daniel P;Nolan, Marie T
通讯作者：
Nolan, Marie T