Centre for Elderly and Nursing Home Medicine, Department of Public Health and Primary Care, University of Bergen, P.O. Box 7800, NO-5020, Bergen, Norway.
Faculty of Health studies, VID Specialized University, Bergen, Norway.
BMC Health Serv Res. 2020 Nov 16;20(1):1045. doi: 10.1186/s12913-020-05913-z.
As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes.
Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention.
We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes.
We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.
随着痴呆症患者人数的增加，人们呼吁为这一群体建立可持续的临床路径，以协调护理和支持。LIVE@Home.Path 试验是一项多成分、多学科的干预措施，结合了学习、创新、志愿者支持和赋权。为了实施干预，市协调员起着至关重要的作用。对多成分干预措施的实施研究很复杂，因此我们进行了一项定性研究，旨在探讨协调员的角色以及协调员如何使痴呆症患者在决策过程中获得赋权。
选择定性方案评估与解释学解释方法相结合作为方法学方法。16 对由痴呆症患者及其主要非正规照顾者组成的 dyad 接受了两名协调员的干预。其中，6 对 dyad、3 名非正规照顾者和 2 名照顾协调员及其负责人共 18 人参加了深入或焦点小组访谈，在干预 6 个月后分享了他们的经验。
我们发现协调员为参与的 dyad 履行了三项职能：充当安全网，这意味着 dyad 目前可能没有什么需求，但与可能在情况发生变化时提供帮助的人建立关系，会感到安全；充当探路者，意味着他们支持 dyad 通过护理和支持服务的复杂系统找到自己的道路；充当情感关怀和支持的来源，这意味着他们在困难时期倾听、认可并提供建议。协调员强调，信任的领导和工作环境对他们履行这些职能至关重要。我们还发现，协调员很难与痴呆症患者建立关系，以便在决策过程中真正赋予他们权力。
我们发现，为痴呆症患者及其非正规照顾者建立赋权协调和可持续护理途径的后续框架是一个可行的起点。应寻求更多协调员与痴呆症患者的接触点，以履行患者参与决策过程的基本权利。
