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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.
The projects concerns tree studies.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| EMBRACE (Relatives) | Other | Feasibility test of a new palliative rehabilitation blended learning program for relatives of people with ALS/cognitive impairments |
|
| EMBRACE (Health care providers) | Other | Feasibility test of a new palliative rehabilitation blended learning program health care providers helping people with ALS/cognitive impairments |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| EMBRACE (relatives) | Other | Online support program for both relatives |
| |
| Measure | Description | Time Frame |
|---|---|---|
| Coping with ALS and cognitive impairments | Framework of Complex Intervention in Health: MRC-guidelines according to acceptability, implementation and integration | 0-4 month |
| Measure | Description | Time Frame |
|---|---|---|
| Burden | The Zarit Burden Interview (ZBI-22) questionnaires at baseline (Pre and post intervention) | 0-4 month |
| Anxiety and Stress | Hospital Anxiety and Depression Scale (HADS) (Pre and post intervention) |
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Inclusion Criteria: Relatives
Exclusion Criteria:
-
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| Name | Affiliation | Role |
|---|---|---|
| Charlotte Handberg, senior researcher | The National Rehabilitation Center for Neuromuscular Diseases | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| The Danish national Rehabilitation Center for neuromuscular diseases | Aarhus | 8000 | Denmark |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 38343431 | Derived | 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. | |
| 35610609 |
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| EMBRACE (Health care providers) |
| Other |
Online support program for health care providers |
|
| 0-4 month |
| Derived |
| 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. |
| 35187490 | Derived | 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. |
| ID | Term |
|---|---|
| D060825 | Cognitive Dysfunction |
| ID | Term |
|---|---|
| D003072 | Cognition Disorders |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
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| ID | Term |
|---|---|
| D006282 | Health Personnel |
| ID | Term |
|---|---|
| D005159 | Health Care Facilities Workforce and Services |
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