Pesut B, Hooper B P, Robinson C A, Bottorff J L, Sawatzky R, Dalhuisen M
School of Nursing, University of British Columbia, Kelowna, British Columbia, Canada.
School of Nursing, Neufeld Science Centre, Trinity Western University, Langley, British Columbia, Canada.
Rural Remote Health. 2015 Apr-Jun;15(2):3116. Epub 2015 May 4.
Healthcare models for the delivery of palliative care to rural populations encounter common challenges: service gaps, the cost of the service in relation to the population, sustainability, and difficulty in demonstrating improvements in outcomes. Although it is widely agreed that a community capacity-building approach to rural palliative care is essential, how that approach can be achieved, evaluated and sustained remains in question. The purpose of this community-based research project is to test the feasibility and identify potential outcomes of implementing a rural palliative supportive service (RPaSS) for older adults living with life-limiting chronic illness and their family caregiver in the community. This paper reports on the feasibility aspects of the study.
RPaSS is being conducted in two co-located rural communities with populations of approximately 10 000 and no specialized palliative services. Participants living with life-limiting chronic illness and their family caregivers are visited bi-weekly in the home by a nurse coordinator who facilitates symptom management, teaching, referrals, psychosocial and spiritual support, advance care planning, community support for practical tasks, and telephone-based support for individuals who must commute outside of the rural community for care. Mixed-method collection strategies are used to collect data on visit patterns; healthcare utilization; family caregiver needs; and participant needs, functional performance and quality of life.
A community-based advisory committee worked with the investigative team over a 1-year period to plan RPaSS, negotiating the best fit between research methods and the needs of the community. Recruitment took longer than anticipated with service capacity being reached at 8 months. Estimated service capacity of one nurse coordinator, based on bi-weekly visits, is 25 participants and their family caregivers. A total of 393 in-person visits and 53 telephone visits were conducted between January 2013 and May 2014. Scheduled in-person visit duration showed a mean of 67 minutes. During this same time period only 19 scheduled visits were declined, and there was no study attrition except through death, indicating a high degree of acceptability of the intervention. The primary needs that were addressed during these visits have been related to chronic disease management, and the attending physical symptoms were addressed through teaching and support. The use of structured quality of life and family caregiver needs assessments has been useful in facilitating communication, although some participants experienced the nature of the questions as too personal in the early stages of the relationship with the nurse coordinator.
Findings from this study illustrate the feasibility of providing home-based services for rural older adults living with life-limiting chronic illness. The RPaSS model has the potential to smooth transitions and enhance quality of life along the disease trajectory and across locations of care by providing a consistent source of support and education. This type of continuity has the potential to foster the patient- and family-centered approach to care that is the ideal of a palliative approach. Further, the use of a rural community capacity-building approach may contribute to sustainability, which is a particularly important part of rural health service delivery.
为农村人口提供姑息治疗的医疗模式面临一些共同挑战:服务缺口、服务成本与人口的关系、可持续性以及难以证明结果有所改善。尽管人们普遍认为,采用社区能力建设方法开展农村姑息治疗至关重要,但如何实现、评估和维持该方法仍存在疑问。这个基于社区的研究项目旨在测试为患有晚期慢性病的老年人及其家庭照顾者在社区实施农村姑息支持服务(RPaSS)的可行性,并确定其潜在结果。本文报告了该研究的可行性方面。
RPaSS在两个相邻的农村社区开展,每个社区约有10000人,且没有专门的姑息服务。患有晚期慢性病的参与者及其家庭照顾者由一名护士协调员每两周进行一次家访,该协调员负责促进症状管理、教学、转诊、心理社会和精神支持、预先护理计划、社区对实际任务的支持,以及为必须前往农村社区以外就医的个人提供电话支持。采用混合方法收集策略来收集有关访视模式、医疗保健利用、家庭照顾者需求以及参与者需求、功能表现和生活质量的数据。
一个基于社区的咨询委员会与研究团队合作了一年来规划RPaSS,商讨研究方法与社区需求之间的最佳契合点。招募时间比预期长,8个月时达到了服务能力。根据每两周一次的访视,一名护士协调员的估计服务能力为25名参与者及其家庭照顾者。2013年1月至2014年5月期间共进行了393次面对面访视和53次电话访视。预定的面对面访视平均时长为67分钟。在同一时期,只有19次预定访视被拒绝,除因死亡外没有研究对象退出,这表明该干预措施具有高度可接受性。这些访视期间解决的主要需求与慢性病管理相关,通过教学和支持来处理伴随的身体症状。使用结构化的生活质量和家庭照顾者需求评估有助于促进沟通,尽管一些参与者在与护士协调员关系的早期阶段觉得问题的性质过于私人化。
本研究结果表明,为患有晚期慢性病的农村老年人提供居家服务是可行的。RPaSS模式有可能通过提供持续的支持和教育来源,在疾病轨迹和不同护理地点之间平稳过渡并提高生活质量。这种连续性有可能促进以患者和家庭为中心的护理方法,这是姑息治疗方法的理想目标。此外,采用农村社区能力建设方法可能有助于实现可持续性,这是农村卫生服务提供的一个特别重要的部分。