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

Danish Rehabilitation Centre for Neuromuscular Diseases

Status: Completed

Conditions: Rehabilitation; Cognitive Impairment; Health Care Providers; Relatives

Treatments: Other: EMBRACE (Health care providers); Other: EMBRACE (relatives)

Study type: Interventional

Funder types: Other

Identifiers

NCT04638608

DanishRebCND

Details and patient eligibility

About

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.

Full 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.

Enrollment: 28 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion and exclusion criteria

Inclusion Criteria: Relatives

• 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

Exclusion Criteria:

Trial design

Primary purpose: Supportive Care

Allocation: Non-Randomized

Interventional model: Single Group Assignment

Masking: Double Blind

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28 participants in 2 patient groups

EMBRACE (Relatives)

Other group

Description:

Feasibility test of a new palliative rehabilitation blended learning program for relatives of people with ALS/cognitive impairments

Treatment:

Other: EMBRACE (relatives)

EMBRACE (Health care providers)

Other group

Description:

Feasibility test of a new palliative rehabilitation blended learning program health care providers helping people with ALS/cognitive impairments

Treatment:

Other: EMBRACE (Health care providers)