The role of the caregiver in patients with an implantable cardioverter
Research type
Research Study
Full title
What are the needs of caregivers of patients with implantable cardioverter defibrillators and how can they be supported and prepared for this role? A mixed methods study.
IRAS ID
348928
Contact name
Mark Linden
Contact email
Sponsor organisation
Queens University Belfast
Clinicaltrials.gov Identifier
NA, NA
Duration of Study in the UK
0 years, 5 months, 22 days
Research summary
Title: What are the needs of caregivers of patients with implantable cardioverter defibrillators and how can they be supported and prepared role? A mixed methods study.
Background: Implantable cardioverter defibrillator devices (ICD) are used in people with heart rhythm issues. When the heart does not pump in rhythm, it can cause problems such as shortness of breath, chest pain, fatigue, and ultimately, for some people, sudden cardiac death. To treat this problem, a cardiologist will insert an ICD in the muscle below the left collar bone. The ICD has wires leading to the heart. The ICD device can detect when the heart is not beating properly and give the heart a small electrical shock to make the heart return to a normal rhythm, which may save the person's life.
Using these devices affects not only the patient, but also the day-to-day lives of those who live closely with them. These caregivers, who are often close friends or relatives, may have to face an emergency, or experience stress and anxiety from witnessing the patient getting a shock from the ICD. We want to find out more about the experiences and needs of caregivers so that we can know how to prepare and support them better.Methods: We will review the scientific literature on the experiences and needs of caregivers. Then we will ask up to 200 caregivers to fill out a questionnaire about their experiences, knowledge, and needs in relation to caring for someone with an ICD. Finally, we will interview 13 caregivers and then 13 healthcare professionals to get a deeper understanding of how caregivers can be supported.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
25/EE/0030
Date of REC Opinion
26 Mar 2025
REC opinion
Further Information Favourable Opinion