Psychology Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore.
Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore.
BMC Palliat Care. 2020 Aug 20;19(1):132. doi: 10.1186/s12904-020-00638-6.
While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing.
This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers.
Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member's pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member's prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver.
Fulfilling and enhancing one's sense of self-determination appears central to infusing one's caregiving motivations with positive meaning, and consequently nurturing one's wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.
尽管家庭护理的影响已经得到充分证实，但许多此类研究都集中于调查社会经济地位、资源可及性和社会支持可用性等外部因素，将其作为护理人员幸福感结果的主要原因。本文探讨了促使家庭护理人员在临终时支持其家庭成员的动机，并批判性地审视了这些动机的内部评估过程如何对他们的幸福感产生积极和消极的影响。
本研究采用解释现象学分析（IPA）方法，调查了新加坡照顾临终家庭成员的亚洲家庭护理人员的动机和内部评估过程。从一项新的姑息治疗患者及其家庭尊严干预（FDI）的随机对照试验中抽取了 20 对定性对偶访谈数据。抽样人群包括年龄在 21 岁及以上的参与者，他们被确定为预后不足 12 个月的老年姑息治疗患者的主要照顾者。数据收集在患者和家庭护理人员的家中进行。
研究结果揭示了六个主题，这些主题可以滋养或削弱护理人员的幸福感：1）履行忠诚（护理人员有动力承担他们的护理角色，以避免遗憾）；2）减轻痛苦（护理人员有动力减轻他们家人的痛苦）；3）坚持依恋（护理人员有动力与家人共度时光）；4）保持感激（护理人员有动力通过护理表达对家人的感激）；5）适应变化（护理人员有动力相应地适应疾病轨迹的变化）；6）接受死亡（护理人员有动力相应地对家人的预后做出反应）。幸福感决定因素的最后一个主题被认为是自我决定的表现，并被推测会影响护理人员对护理动机的评估。
履行和增强自我决定感似乎是为护理人员的护理动机注入积极意义的核心，从而在临终护理之旅中培养他们的幸福感。这些发现与为姑息治疗患者的家庭护理人员提供建议的医护专业人员进行了讨论。
