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.
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.
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
DOUBLE
Enrollment
28
Online support program for both relatives
Online support program for health care providers
The Danish national Rehabilitation Center for neuromuscular diseases
Aarhus, Denmark
Coping with ALS and cognitive impairments
Framework of Complex Intervention in Health: MRC-guidelines according to acceptability, implementation and integration
Time frame: 0-4 month
Burden
The Zarit Burden Interview (ZBI-22) questionnaires at baseline (Pre and post intervention)
Time frame: 0-4 month
Anxiety and Stress
Hospital Anxiety and Depression Scale (HADS) (Pre and post intervention)
Time frame: 0-4 month
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