Cohen S Robin, Keats Susan, Cherba Maria, Allen Dawn, MacKinnon Christopher J, Bitzas Vasiliki, Kogan Naomi, Penner Jamie L, Calislar Monica Parmar, Feindel Anna, Lapointe Bernard, Baxter Sharon, O'Brien Suzanne, Stajduhar Kelli
McGill University Lady Davis Institute for Medical Research, Jewish General Hospital.
McGill University.
BMJ Support Palliat Care. 2015 Apr;5 Suppl 1:A3. doi: 10.1136/bmjspcare-2015-000906.8.
Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers.
To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers.
A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections.
Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient).
Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.
家庭照顾者在身体、心理和精神上都承受着痛苦。社区志愿者在为临终患者或丧亲后的 former 照顾者提供支持方面发挥着重要作用。然而，目前尚无专注于维持临终照顾者福祉的志愿服务研究报告。
让志愿者、雇佣的志愿者协调员、医疗服务提供者和研究人员实施并对一项志愿服务进行形成性评估，以使家庭照顾者在提供护理及后续丧亲期间能够维持自身福祉。本报告将重点关注志愿者在该项目中的角色，他们既是服务变革的推动者，也是照顾者的支持者。
采用了由古巴和林肯的第四代评估（1989 年）参与式设计所指导的定性形成性评估。数据通过个人访谈、焦点小组、志愿者支持会议期间的参与观察以及志愿者的书面反思收集。
在志愿者、志愿者协调员和首席研究员之间，相互尊重并对了解项目中每个人的角色和经历感兴趣。这段经历很有意义，因为他们觉得自己帮助了家庭照顾者，并且乐于开发和改进服务以及在一个相互支持的团队中工作。志愿者面临的挑战包括首次与照顾者会面时感到紧张，以及对为保护他们而制定的一些规定感到沮丧（例如不直接帮助照顾者照顾患者）。
志愿者可以成为研究团队的有效组成部分，同时为家庭照顾者维持自身福祉提供宝贵的支持和鼓励。
