Virtual Peer-to-peer Support Programme for Carers of MND

Launched by KING'S COLLEGE LONDON · Jan 4, 2021

Keywords

ClinConnect Summary

This clinical trial is studying the effects of an online peer support program designed for family caregivers of individuals with Motor Neuron Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS). The program lasts for 12 weeks and aims to help caregivers improve their mental well-being and cope with the challenges of caring for someone with MND, particularly those who need extra support for breathing and nutrition. Participants will have access to private messaging, weekly chats, and discussion forums, where they can connect with others facing similar challenges.

To be eligible for this trial, participants must be at least 18 years old, care for someone with MND who is receiving specific medical support (like assisted ventilation or feeding), and be able to communicate in English. They also need access to the internet and a device like a computer, tablet, or smartphone. Throughout the study, caregivers will share their experiences and complete surveys to help the researchers understand how well the program works and how it can be improved for future use. This trial is important because it could offer valuable support to caregivers, helping them manage their stress and improve their quality of life.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. age ≥ 18 years;
• 2. family/informal caregiver of an individual with MND living at home who is referred for consideration or receiving any of the following i.e., entering King's clinical staging Stage 4A: nutritional support; or Stage 4B: respiratory support \[51\]:
• • 1. assisted ventilation
• • 2. cough assist
• • 3. gastroscopy and enteral feeding
• • 3. able to speak/read English;
• • 4. has access to a computer, tablet, or smartphone and the internet (we have the ability to provide loan 4G enabled tablets if required); and
• • 5. consents to participation
• Exclusion Criteria:
• • 1. Actively receiving psychiatric/psychologist care identified through self-report.