Stajduhar Kelli I, Nickel Dawn D, Martin Wanda L, Funk Laura
Centre on Aging, University of Victoria, BC, Canada.
Soc Sci Med. 2008 Dec;67(11):1789-97. doi: 10.1016/j.socscimed.2008.09.012. Epub 2008 Oct 14.
Since the inception of the modern hospice movement, the patient and family caregiver (FCG) have been considered the unit of care; family members are identified as 'clients' within palliative care philosophy. Little research has focused on how FCGs define their roles within the hospice palliative care (HPC) system. The aim of this study was to describe how FCGs of dying cancer patients view their roles in relation to the HPC system. Secondary analysis of interviews with 36 bereaved FCGs in Western Canada, guided by interpretive descriptive methods, found that FCGs perceived themselves as having two roles: client and co-worker. FCGs situated themselves as clients, where they actively sought help from the health care system. FCGs at times also perceived they had been situated as clients by health care providers, and were more resistant to accepting help. In other comments FCGs situated themselves as co-workers, seeking out an active role within the HPC team, whereas in other instances, felt they were situated as co-workers by a health care system with limited financial and human resources. Findings suggest that greater emphasis be placed on helping family members identify suitable interventions depending on how they view their roles within the HPC system. How we define family members in relation to the HPC system may also require reconsideration to reflect a more current conceptualization of realities in end-of-life care.
自现代临终关怀运动兴起以来,患者和家庭照顾者(FCG)一直被视为护理单元;在姑息治疗理念中,家庭成员被认定为“客户”。很少有研究关注家庭照顾者如何在临终关怀姑息治疗(HPC)系统中界定自己的角色。本研究的目的是描述临终癌症患者的家庭照顾者如何看待他们在HPC系统中的角色。在诠释性描述方法的指导下,对加拿大西部36位失去亲人的家庭照顾者的访谈进行二次分析,发现家庭照顾者认为自己有两个角色:客户和同事。家庭照顾者将自己定位为客户,积极寻求医疗保健系统的帮助。家庭照顾者有时也觉得自己被医疗保健提供者定位为客户,并且更抗拒接受帮助。在其他评论中,家庭照顾者将自己定位为同事,在HPC团队中寻求积极的角色,而在其他情况下,他们觉得自己被一个资金和人力资源有限的医疗保健系统定位为同事。研究结果表明,应更加强调根据家庭成员如何看待自己在HPC系统中的角色来帮助他们确定合适的干预措施。我们如何界定家庭成员与HPC系统的关系可能也需要重新考虑,以反映临终护理现实的更新概念。