A Complex Intervention Study on a Palliative Rehabilitation Blended Learning Program to Support Relatives and Health Care Providers of People With ALS and FTD in Coping With Challenges
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 28
- 试验地点
- 1
- 主要终点
- Coping with ALS and cognitive impairments
研究概览
简要总结
A complex intervention study on a palliative rehabilitation blended learning program to support relatives and health care providers of people with ALS and cognitive impairments in coping with challenges.
详细描述
The projects concerns tree studies.
- Identifying experience-based evidence of relative of deceased people with ALS/cognitive impairments and health care providers (working with these persons) and develop an intervention program.
- Developing a palliative rehabilitation blended learning program for relatives of people with ALS and cognitive impairments and for the health care providers.
- Feasibility testing of the two palliative rehabilitation blended learning programs for relatives and health care providers.
Though online palliative rehabilitation the intervention aims to support both relatives of people with ALS/cognitive impairments and health care providers in coping with challenges related to the diseases.
The intervention consists of blended learning through online videos and virtual group meetings, where peer-support play an essential role. The videos consists of a psycho education, mindfulness based stress reduction, relationship changes, intimacy, sorrow and grief, control management, planning the future, how to communicate, hope, creating memories, external support offers. Besides the videos and group meetings, the relatives are given the possibility to make Ecomaps and diary reflections.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- Double (Participant, Care Provider)
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •relatives (spouse or partner) living with a person with ALS and cognitive impairments (rated on the ALS-FTD-Q by the relative, cut-off >22) Able to talk and understand proficient danish referred to the national rehabilitation center for neuromuscular diseases and have had a visit from an als-consultant
排除标准
- 未提供
研究组 & 干预措施
EMBRACE (Relatives)
Feasibility test of a new palliative rehabilitation blended learning program for relatives of people with ALS/cognitive impairments
干预措施: EMBRACE (relatives) (Other)
EMBRACE (Health care providers)
Feasibility test of a new palliative rehabilitation blended learning program health care providers helping people with ALS/cognitive impairments
干预措施: EMBRACE (Health care providers) (Other)
结局指标
主要结局
Coping with ALS and cognitive impairments
时间窗: 0-4 month
Framework of Complex Intervention in Health: MRC-guidelines according to acceptability, implementation and integration
次要结局
- Burden(0-4 month)
- Anxiety and Stress(0-4 month)
研究者
Lene Klem Olesen
PhD, Occupational Therapist, MA in Educational psychology
Danish Rehabilitation Centre for Neuromuscular Diseases