Walshe Catherine, Algorta Guillermo Perez, Dodd Steven, Hill Matthew, Ockenden Nick, Payne Sheila, Preston Nancy
International Observatory on End of Life Care, Division of Health Research, Lancaster University, Bailrigg, Lancaster, LA1 4YW, UK.
Division of Health Research, Lancaster University, Bailrigg, Lancaster, LA1 4YW, UK.
BMC Palliat Care. 2016 Jul 13;15:60. doi: 10.1186/s12904-016-0134-3.
Compassionate support at the end of life should not be the responsibility of health and social care professionals alone and requires a response from the wider community. Volunteers, as community members, are a critical part of many end-of-life care services. The impact of their services on important outcomes such as quality of life is currently poorly understood. The purpose of this study is to evaluate a series of social action initiatives which use volunteers to deliver befriending services to people anticipated to be in their last year of life. The aim is to determine if receiving care from a social action volunteer befriending service plus usual care significantly improves quality of life in the last year of life.
METHODS/DESIGN: The research questions will be addressed through a wait-list randomised controlled trial (WLRCT) and qualitative case study evaluation across 12 sites in England. Participants will be randomly allocated to either receive the social action volunteer befriending service straight away or receive the intervention after a four week wait (wait-list arm). The impact of the intervention on end-of-life experience (quality of life as primary outcome, loneliness, social support) will be measured. Repeated assessments will be carried out at baseline and weeks 4 and 8 for the intervention arm and weeks 4, 8 and 12 for the wait-list arm. For selected sites case study evaluation will include interviews, observation and documentary analysis to understand the mechanisms underpinning any found impact.
This study will address the need to both provide services which use social action models to support end-of-life care in community settings, and to robustly evaluate these models to determine if they influence the experience of end-of-life care. Such services could work to reduce isolation, help meet emotional needs and maintain a sense of connectedness to the community. ISRCTN 12929812 Registered 20.5.15.
临终关怀不应仅是健康和社会护理专业人员的责任，还需要更广泛的社区做出回应。志愿者作为社区成员，是许多临终关怀服务的关键组成部分。目前人们对他们的服务对生活质量等重要结果的影响了解甚少。本研究的目的是评估一系列社会行动倡议，这些倡议利用志愿者为预计处于生命最后一年的人提供陪伴服务。目的是确定接受社会行动志愿者陪伴服务加常规护理是否能显著提高生命最后一年的生活质量。
方法/设计：研究问题将通过等待名单随机对照试验（WLRCT）以及对英格兰12个地点的定性案例研究评估来解决。参与者将被随机分配，要么立即接受社会行动志愿者陪伴服务，要么在等待四周后接受干预（等待名单组）。将测量干预对临终体验（以生活质量为主要结果、孤独感、社会支持）的影响。干预组将在基线、第4周和第8周进行重复评估，等待名单组将在第4周、第8周和第12周进行重复评估。对于选定的地点，案例研究评估将包括访谈、观察和文献分析，以了解任何已发现影响背后的机制。
本研究将满足以下两方面需求，一是提供利用社会行动模式支持社区临终关怀的服务，二是对这些模式进行严格评估，以确定它们是否会影响临终关怀体验。此类服务有助于减少孤立感，满足情感需求，并维持与社区的联系感。国际标准随机对照试验编号12929812，于2015年5月20日注册。
