Virtual Peer-to-peer Support Programme for Carers of MND
Motor Neuron Disease, Amyotrophic Lateral Sclerosis
About this trial
This is an interventional supportive care trial for Motor Neuron Disease focused on measuring caregiver
Eligibility Criteria
Inclusion Criteria:
- age ≥ 18 years;
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]:
- assisted ventilation
- cough assist
- gastroscopy and enteral feeding
- able to speak/read English;
- has access to a computer, tablet, or smartphone and the internet (we have the ability to provide loan 4G enabled tablets if required); and
- consents to participation
Exclusion Criteria:
1. Actively receiving psychiatric/psychologist care identified through self-report.
Sites / Locations
- Bedfordshire Hospitals NHS Foundation TrustRecruiting
- Airedale NHS Foundation TrustRecruiting
- University Hospitals Sussex NHS Foundation TrustRecruiting
- Pilgrims HospiceRecruiting
- Coventry Community Specialist Palliative Care TeamRecruiting
- University Hospitals Coventry and Warwickshire NHS TrustRecruiting
- Ninewells HospitalRecruiting
- Royal Devon University Healthcare NHS Foundation TrustRecruiting
- Phyllis Tuckwell HospiceRecruiting
- Medway Community HealthcareRecruiting
- Kingston Hospital NHS FoundationRecruiting
- The Leicestershire & Rutland Organisation for the Relief of Suffering - LOROSRecruiting
- The Walton Centre NHS Foundation TrustRecruiting
- Guy's and St Thomas' NHS Foundation TrustRecruiting
- Lancashire Teaching Hospitals NHS Foundation TrustRecruiting
- Marie Curie HospiceRecruiting
- Nottinghamshire Healthcare NHS Foundation TrustRecruiting
- Royal Stoke University Hospital/University Hospitals NorthRecruiting
- Swansea Bay University Health BoardRecruiting
- University Hospitals Plymouth NHS trustRecruiting
- Sheffield Teaching Hospitals NHS Foundation TrustRecruiting
- Severn HospiceRecruiting
- St Margaret's HospiceRecruiting
- Hounslow and Richmond Community HealthcareRecruiting
- Compton CareRecruiting
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
Virtual Peer-to-Peer Support
Control
Those participants randomised to the intervention arm will have access to a 12-week virtual peer-to-peer support programme which entails: weekly audio, video, or text private messaging with a peer supporter; synchronous weekly discussion forum attended by peer supporters and family caregiver participants moderated by the research team. These forums will discuss specific topics (e.g. caregiver self-care, the emotional impact of caregiving). Ask the expert forums will be moderated by clinical experts every 6 weeks (meaning all participants will have access to 2 ask the expert sessions); asynchronous discussion forums in which participants can post questions; and access to informational resources.
Those participants randomised to the control arm will receive usual care which comprises self-directed access to the MND Association Visitors programme and MND Association educational resources via their website.