Understanding patient experience of an implantable cardioverter defibrillator support group and preferences towards education and support modalities

Patients with implantable cardioverter defibrillators (ICDs) are known to experience high levels of psychological distress, which is associated with shocks. Current national guidelines recommend the use of patient support groups to address this in clinical practice despite a relative paucity of research evidence regarding support groups for ICD patients.

Qualitative studies have reported that patients perceive benefit from the opportunity to share their experiences and meaningful information. There is a larger body of research evidence in support of such groups for patients with other conditions, however the extent to which the findings are generalisable to ICD patients is not clear because the risk of recurrent shock delivery is unique to this patient group.

For all groups, the most effective format and way in which to involve health care professionals has not yet been established. A local ICD support group has been initiated by a group of patients in partnership with cardiology clinical staff. The format and aims of the group was chosen by the patients based on their own experiences and perceived needs.

We propose a study to explore how this group is experienced by patients with ICDs: the aims of the project are to assess whether needs and perceived benefit differ between patients who have and have not had previous shocks, and develop increased understanding of what format of group and level of health care professional involvement may provide the greatest benefit. We will utilise a flexible multi-strategy design. Data will be collected through semi-structured interviews. Interviews will initially be undertaken with patient participants of the support group, however theoretical sampling may lead to recruitment of others with relevant experience depending on the emerging themes from the interviews. Interview transcripts will be analysed thematically and iteratively using the constant comparison method. Once qualitative data analysis is complete, a questionnaire will be developed from the results and issued to a convenience sample of 50 patients and carers who attend the support group. This will challenge our interpretations of the interview and check that our findings are representative of the wider patient group. The results will be used to develop recommendations for ICD support group provision, format, and involvement of health care professionals, and submitted for dissemination at our national conference.