NCT04638608

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

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

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 28 (actual)
• Sponsor: Danish Rehabilitation Centre for Neuromuscular Diseases · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

Summary

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.

Detailed description

The projects concerns tree studies. 1. 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. 2. Developing a palliative rehabilitation blended learning program for relatives of people with ALS and cognitive impairments and for the health care providers. 3. 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.

Conditions

• Relatives
• Health Care Providers
• Cognitive Impairment
• Rehabilitation

Interventions

Type	Name	Description
OTHER	EMBRACE (relatives)	Online support program for both relatives
OTHER	EMBRACE (Health care providers)	Online support program for health care providers

Timeline

• Start date: 2019-11-01
• Primary completion: 2022-10-31
• Completion: 2022-10-31
• First posted: 2020-11-20
• Last updated: 2023-02-16

Locations

1 site across 1 country: Denmark