姑息治疗中患者和家庭护理人员之间的相互支持:一项定性研究。
Mutual support between patients and family caregivers in palliative care: A qualitative study.
发表日期:2023 Oct 13
作者:
Rachel McCauley, Karen Ryan, Regina McQuillan, Geraldine Foley
来源:
PALLIATIVE MEDICINE
摘要:
接受姑息治疗服务的患者通常主要被视为家庭护理人员支持的接受者。姑息治疗中缺乏关于姑息治疗中患者与其家庭护理人员之间相互支持的证据。确定姑息治疗中患者与其家庭护理人员之间相互支持的过程。包括半结构化访谈的定性研究。使用扎根理论程序对数据进行分析。从大型区域性临终关怀医院招募了 15 名晚期疾病患者(癌症 n = 14,神经退行性疾病 n = 1)和 21 名家庭护理人员。患者和家庭护理人员之间的相互支持包括两种主要模式,其中提供并收到了支持。相互支持涉及患者和家庭护理人员相互提供类似类型的支持,通常表现为情感支持。然而,当患者通过向家庭护理人员提供情感支持来补偿他们认为无法再提供的其他形式的支持时,也会发生相互支持。患者通过让家庭护理人员参与护理决策来支持他们,患者和家庭护理人员的偏好都受到对彼此的义务的影响。相互支持包括公开和隐瞒。患者希望让家庭护理人员参与患者护理决策,以帮助家庭护理人员适应护理角色。研究结果为姑息治疗中患者和家庭护理人员制定和实施心理社会干预措施提供了信息,旨在促进他们之间的支持关系。
Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care.To identify processes of mutual support between patients and family caregivers in palliative care.Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures.Fifteen patients with advanced illness (cancer n = 14, neurodegenerative n = 1) and 21 family caregivers recruited from a large regional-based hospice.Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role.The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.