Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Dublin, Ireland.
St. Francis Hospice Dublin, Dublin, Ireland.
Palliat Med. 2023 Dec;37(10):1520-1528. doi: 10.1177/02692163231205130. Epub 2023 Oct 13.
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.
SETTING/PARTICIPANTS: Fifteen patients with advanced illness (cancer = 14, neurodegenerative = 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.
接受姑息治疗服务的患者通常主要被视为其家庭照顾者提供支持的对象。姑息治疗领域缺乏关于姑息治疗中患者和他们的家庭照顾者之间相互支持包含哪些内容的证据。
确定姑息治疗中患者和家庭照顾者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。
地点/参与者：从一家大型地区临终关怀机构招募了 15 名患有晚期疾病的患者（癌症 14 例，神经退行性疾病 1 例）和 21 名家庭照顾者。
患者和家庭照顾者之间的相互支持包括提供和接受支持的两种主要模式。相互支持涉及患者和家庭照顾者相互提供相似类型的支持，通常表现为情感支持。然而，当患者通过向他们的家庭照顾者提供情感支持来弥补他们认为自己无法提供的其他形式的支持时，相互支持也会发生。患者通过让他们参与照顾决策来支持家庭照顾者，并且患者和家庭照顾者的偏好都受到他们对彼此的义务的影响。相互支持包括披露和隐瞒。让家庭照顾者参与患者的护理决策，是患者帮助他们适应护理角色的意图。
这些发现为姑息治疗中的患者和家庭照顾者提供了心理社会干预措施的制定和实施的信息，旨在促进他们之间的支持关系。
