Understanding patient experience of an ICD support group
Research type
Research Study
Full title
Understanding patient experience of an ICD support group: preferences towards education and support modalities and the impact of Covid-19 upon support provision
IRAS ID
274856
Contact name
Peter Pugh
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Research Summary
ICDs are implanted to treat people who have, or are at risk of having, dangerously abnormal heart rhythms which cause cardiac arrest. An ICD sends an electrical shock to the heart and this treatment can be life-saving, but patients may find it distressing.
Some patients with an ICD experience feelings of anxiety, stress and depression after their implant which can significantly affect their quality of life. Studies have shown that support groups provide significant benefit to patients with cancer and other long term health conditions, however we do not know if patients with an ICD benefit from the same format of group in the same way due to the unique situation of potentially receiving a shock from the ICD.
The most effective format for ICD support groups is currently unknown. The format of the current ICD support group was originally decided by consensus based on the format of similar groups in other areas, however it is currently restricted to online video conferencing due to Covid-19.
We therefore wish to undertake a study to investigate the experiences of patients attending the ICD support group, exploring the perceived benefits of those who access the group, and how the format of the group and involvement of health care professionals influences this experience, and how this has been impacted by Covid-19. We aim to explore whether patients who have and have not received a shock from their ICD have different support needs. We plan to develop a theory and recommendations regarding the most effective group format and how and when it is beneficial to involve health care professionals in a patient-led support group.
The results of this study could benefit patients by improving our understanding of how to effectively support those who are living with ICDs through the implementation of patient-led support groups.
Summary of Results
People who have an Implantable Cardioverter Defibrillator (ICD) implanted may experience feelings of worry, stress or depression after their implant. This can affect their quality of life and even increase their risk of being readmitted to hospital. Improving patients’ well-being, confidence and ability to live a normal life with their ICD is important because mental ill-health is the largest cause of disability in the UK with a significant cost to the health service and wider economy.
Patient support groups offer a low-resource option to improve the lives of patients living with an ICD. Previous medical studies have shown that patients find support groups beneficial through the sharing of their experiences and gaining meaningful information about their ICD. However, few support groups exist in practice and there are no specific guidelines regarding how they should be delivered. This research project was designed to explore not only the perceived benefit of attending an ICD support group, but also how the format of the group, together with the involvement of health care professionals, might influence group members’ experience.
A support group was developed for patients with ICDs by a committee of patients with ICDs and a cardiac clinical scientist. The cardiac clinical scientist was undertaking a doctoral research qualification and also carried out the research in this study, which was sponsored by Cambridge University Hospitals and supervised by Manchester Metropolitan University. Patients with ICDs were interviewed to explore their attitudes and perceptions of attending an ICD support group. After the interviews were complete, a questionnaire was designed to further explore the influence of support group format and involvement of heath care professionals.A four-person patient and public involvement group was involved throughout the study: three of whom had personal experience of living with an ICD and two had experience of involvement in support groups. This group applied their lived experience to the design of the interview guide, analysis of the interview transcripts, and design of a patient questionnaire.
This research found that making connections with other ICD patients, access to information and reassurance, and advice from healthcare professionals were important perceived benefits of the support group. Support groups can provide patients with the opportunity to learn and utilise coping skills required to adapt to their life with an ICD. There was more agreement from participants regarding what a support group should provide (e.g. healthcare professional-provided education, peer support) rather than how the support should be provided (e.g. peer support via one-to-one vs group settings). The research findings from this project allowed the development of recommendations to ensure support groups meet the needs of as many patients as possible. A flexible format of in-person community meetings, online forums, healthcare professional-provided education and opportunities for patient-patient interaction is recommended. Importantly, participants identified that access to support groups should not be time-limited to allow patients to attend when it is most likely to be of benefit to them.
Improving the delivery of a support group for patients with ICDs is important because it helps them to adapt to their new life without living in fear. Education and knowledge provided by healthcare professionals is an important aspect of support groups, however, defining the boundaries of professional involvement with the support group is equally essential to ensure the patient-led aims and objectives are respected. Combining in-person and online support will allow the group to support more patients in line with their individual preferences. Finally, it is important that healthcare professionals raise awareness of support groups and their value so that all patients are allowed the opportunity to access a group before and after their ICD implant.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
20/EE/0233
Date of REC Opinion
2 Nov 2020
REC opinion
Further Information Favourable Opinion