Sarmento Vera P, Gysels Marjolein, Higginson Irene J, Gomes Barbara
Department of Palliative Care, Policy and Rehabilitation, King's College London, Cicely Saunders Institute, London, UK.
Department of Medicine, Hospital do Espírito Santo de Évora, Évora, Portugal.
BMJ Support Palliat Care. 2017 Dec;7(4):0. doi: 10.1136/bmjspcare-2016-001141. Epub 2017 Feb 23.
To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users.
We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services.
28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home.
Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care.
了解患者及其家庭照护者接受居家姑息治疗服务的体验,以识别、探索并整合塑造服务使用者体验的关键照护要素。
我们按照系统评价报告的PRISMA建议,对定性证据进行了元民族志研究。通过使用3个术语及其同义词(“姑息治疗”、“居家照护”、“定性研究”)并结合“AND”,在5个电子数据库(MEDLINE、EMBASE、PsycInfo、BNI、CINAHL)中检索研究,并辅以其他检索策略。我们纳入了探索成年患者和/或其家庭照护者(≥18岁)面临有姑息治疗需求的生命有限疾病、由专科或中级居家姑息治疗服务在家中照护的原始定性研究。
纳入了28篇报告19项研究的论文,共有814名参与者。其中,765名是家庭照护者,90%受晚期癌症影响。根据参与者的描述,居家姑息治疗有两个总体要素:随时在场(全天候可用及家访)和能力(有效的症状控制及熟练的沟通),有助于满足安全感的核心需求。感到安全对于每个要素带来的益处至关重要,使患者和家庭照护者能够专注于在家中生活和准备离世的双重过程。
居家姑息治疗团队通过提供称职的照护和随时在场,改善了患者和照护者在家中面对生命有限疾病时的安全感体验。因此,这些团队应广泛设立,并配备资源以随时在场并提供称职的照护。