McCauley Rachel, Ryan Karen, McQuillan Regina, Foley Geraldine
Discipline of Occupational Therapy, School of Medicine (R.McC, G.F.), Trinity College Dublin, Dublin, Ireland.
St. Francis Hospice (K.R., R.McQ), Dublin, Ireland; Mater Misericordiae University Hospital (K.R.), Dublin, Ireland; University College Dublin (K.R.), Dublin, Ireland.
J Pain Symptom Manage. 2023 Nov;66(5):570-577. doi: 10.1016/j.jpainsymman.2023.08.002. Epub 2023 Aug 5.
Patients and informal caregivers in palliative care can reciprocate in supporting one another. However, how reciprocal support among patients and informal caregivers in palliative care impacts on their decision making for care is not well understood.
To identify how reciprocal support among patients with advanced illness and their informal caregivers in specialist palliative care impacts on their decision making for care.
Between July 2021 and May 2022, 30 qualitative interviews were conducted with 14 patient and caregiver dyads, seven nondyad caregiver participants and one nondyad patient participant (total n = 36), recruited from a large regional specialist palliative care service. Data were analyzed using Corbin and Strauss grounded theory method.
Reciprocal support among patients and informal caregivers was underpinned by obligation and choice. Caregivers who felt obliged to care had difficulty communicating with the patient about the patient's preferences for care and their own wishes for patient care. Patients who felt obliged to accept support from their caregiver tended to minimize caregiver participation in decision making which made caregivers feel disempowered in discussions about patient care. Caregivers tended to be more involved in decision making when caregivers assumed caregiving duties by choice and when the patient did not feel restricted by their reliance on their caregiver. Open communication between patients and caregivers made patients more trusting of their caregiver.
Patient and caregiver dyadic interventions in specialist palliative care involving decision making need to account for how obligation and choice manifest and function between the patient and caregiver.
姑息治疗中的患者和非正式照护者可以相互支持。然而，姑息治疗中患者和非正式照护者之间的相互支持如何影响他们的护理决策，目前尚不清楚。
确定晚期疾病患者及其非正式照护者在专科姑息治疗中的相互支持如何影响他们的护理决策。
2021年7月至2022年5月期间，对从一家大型地区专科姑息治疗服务机构招募的14对患者与照护者、7名非配对照护者参与者和1名非配对患者参与者（共36人）进行了30次定性访谈。采用Corbin和Strauss扎根理论方法对数据进行分析。
患者和非正式照护者之间的相互支持以义务和选择为基础。感到有义务提供照护的照护者在与患者沟通患者对护理的偏好以及他们自己对患者护理的愿望时存在困难。感到有义务接受照护者支持的患者往往会尽量减少照护者参与决策，这使得照护者在关于患者护理的讨论中感到无权。当照护者出于选择承担照护职责且患者不觉得因依赖照护者而受到限制时，照护者往往更参与决策。患者与照护者之间的开放沟通使患者对照护者更信任。
专科姑息治疗中涉及决策的患者与照护者二元干预需要考虑义务和选择在患者与照护者之间如何体现和发挥作用。
