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

NCT ID: NCT04638608

Last Updated: 2023-02-16

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

28 participants

Study Classification

INTERVENTIONAL

Study Start Date

2019-11-01

Study Completion Date

2022-10-31

Brief Summary

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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

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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

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Relatives Health Care Providers Cognitive Impairment Rehabilitation

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

SINGLE_GROUP

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

DOUBLE

Participants Caregivers

Study Groups

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EMBRACE (Relatives)

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

Group Type OTHER

EMBRACE (relatives)

Intervention Type OTHER

Online support program for both relatives

EMBRACE (Health care providers)

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

Group Type OTHER

EMBRACE (Health care providers)

Intervention Type OTHER

Online support program for health care providers

Interventions

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EMBRACE (relatives)

Online support program for both relatives

Intervention Type OTHER

EMBRACE (Health care providers)

Online support program for health care providers

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* 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

\-
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Danish Rehabilitation Centre for Neuromuscular Diseases

OTHER

Sponsor Role lead

Responsible Party

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Lene Klem Olesen

PhD, Occupational Therapist, MA in Educational psychology

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Charlotte Handberg, senior researcher

Role: STUDY_CHAIR

The National Rehabilitation Center for Neuromuscular Diseases

Locations

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The Danish national Rehabilitation Center for neuromuscular diseases

Aarhus, , Denmark

Site Status

Countries

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Denmark

References

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Olesen LK, la Cour K, Nimmon L, With H, Handberg C. Experiences of an Online Palliative Rehabilitation Programme for Spousal Caregivers of People With Amyotrophic Lateral Sclerosis and Cognitive and/or Behavioural Impairments: A Qualitative Interpretive Study. Adv Rehabil Sci Pract. 2024 Feb 9;13:27536351241227860. doi: 10.1177/27536351241227860. eCollection 2024 Jan-Dec.

Reference Type DERIVED
PMID: 38343431 (View on PubMed)

Olesen LK, la Cour K, With H, Mahoney AF, Handberg C. A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments. BMC Health Serv Res. 2022 May 24;22(1):697. doi: 10.1186/s12913-022-07986-4.

Reference Type DERIVED
PMID: 35610609 (View on PubMed)

Olesen LK, la Cour K, With H, Handberg C. Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study. Palliat Care Soc Pract. 2022 Feb 15;16:26323524221077702. doi: 10.1177/26323524221077702. eCollection 2022.

Reference Type DERIVED
PMID: 35187490 (View on PubMed)

Other Identifiers

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DanishRebCND

Identifier Type: -

Identifier Source: org_study_id

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