School of Nursing, McGill University, Montreal, Quebec, Canada.
J Pain Symptom Manage. 2012 Oct;44(4):563-71. doi: 10.1016/j.jpainsymman.2011.10.016. Epub 2012 Jun 13.
Head and neck cancer patients with dysphagia frequently require tube feeding. Family members are often involved in caring for such patients but feel ill prepared to do so. Health professionals are in a key position to support family members who undertake caregiving responsibilities. The ability to provide support requires that the experiences of family caregivers (FCs) are well understood; however, few studies examining these experiences have been conducted. To address this gap, research is needed that examines and describes the caregiving experience from the perspective of family members themselves. Such work will provide an empirical base to guide health professionals' practice with FCs.
To explicate the lived experience of caring for a dysphagic relative with advanced head and neck cancer receiving tube feeding.
A descriptive phenomenological approach was used. Six FCs participated in two in-depth interviews each. Spiegelberg's three-step approach guided data analysis.
The essence of FCs' experience was "negotiating a new normal" and includes the themes of 1) negotiating changing roles, 2) negotiating an altered lifestyle, 3) negotiating ways of coping, and 4) negotiating the meaning of the feeding tube. Themes 1 and 2 are reported on here.
FCs experience significant challenges. Study findings provide direction for health professionals who work with FCs and underscore the need for future research geared toward developing and testing psychoeducational interventions aimed at supporting FCs in the important and difficult caregiving work they do.
患有吞咽困难的头颈部癌症患者经常需要进行管饲。家庭成员通常参与照顾此类患者，但他们感到自己对此准备不足。卫生专业人员在支持承担护理责任的家庭成员方面处于关键地位。提供支持的能力要求充分了解家庭照顾者（FCs）的经验；然而，很少有研究探讨这些经验。为了解决这一差距，需要进行研究，从家庭成员自身的角度来考察和描述照顾体验。此类工作将为指导卫生专业人员与 FCs 合作提供实践的经验基础。
阐明照顾接受管饲的晚期头颈部癌症伴吞咽困难的亲属的实际体验。
采用描述性现象学方法。6 名 FC 参与者每人进行了两次深入访谈。Spiegelberg 的三步法指导数据分析。
FC 体验的本质是“协商新的常态”，包括以下主题：1）协商角色转变，2）协商生活方式的改变，3）协商应对方式，以及 4）协商饲管的意义。这里报告主题 1 和 2。
FC 面临重大挑战。研究结果为与 FCs 合作的卫生专业人员提供了指导，并强调了未来研究的必要性，以开发和测试旨在支持 FCs 开展他们所承担的重要而困难的护理工作的心理教育干预措施。
