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
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Basic Information
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COMPLETED
NA
28 participants
INTERVENTIONAL
2019-11-01
2022-10-31
Brief Summary
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Detailed Description
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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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Study Design
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NON_RANDOMIZED
SINGLE_GROUP
SUPPORTIVE_CARE
DOUBLE
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
EMBRACE (relatives)
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
EMBRACE (Health care providers)
Online support program for health care providers
Interventions
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EMBRACE (relatives)
Online support program for both relatives
EMBRACE (Health care providers)
Online support program for health care providers
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
18 Years
ALL
Yes
Sponsors
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Danish Rehabilitation Centre for Neuromuscular Diseases
OTHER
Responsible Party
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Lene Klem Olesen
PhD, Occupational Therapist, MA in Educational psychology
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
Countries
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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.
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.
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.
Other Identifiers
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DanishRebCND
Identifier Type: -
Identifier Source: org_study_id
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