Examining the needs of informal caregivers of patients with an implantable cardioverter defibrillator (ICD)

Abstract Background Evidence shows informal caregivers require information pre and post device implantation, to support family members at home (Cassidy etal. 2021). Education on practical aspects, such as remote monitoring and exercise, while others, termed ‘co-survivors’(Douma etal. 2021), require psychological support after witnessing of shock therapy (Hill etal. 2019). As ICD implantations increase, there is an urgent need to examine the needs of informal caregivers. Purpose To examine the preparedness, experience and knowledge of informal caregivers of patients with an ICD. Methods Cross sectional descriptive online survey, incorporating a brief demographic questionnaire and four validated tools. The Caregiver Preparedness Scale (Archbold etal., 1990) The Zarit Burden Interview, The Bakas Caregiving Outcomes Scale , ICD-recipients' experiences, attitudes, and knowledge (Thylén etal., 2014) Ethics approval was given by OREC Cambridge Central (348928). Recruitment followed a sequential process, through social media, Patient and Public Involvement (PPI) groups, and finally within clinical settings. Social media and recruitment from PPI commenced in June 2025. Informal caregivers accessed the online survey, via Microsoft form, via a link. Data was anonymized and no IP addresses were collected. Participants were invited to review the information sheet and provide consent, before accessing the survey. Results 35 participants consented, with 18 completing the full survey. Those who did not complete, three duplicated consent and twelve were lost to follow-up. Two participants changed their mind after consenting. Mean age or participants 46 years, with majority female (n=16, 89%) and all were family members. Sixteen participants lived with the patient, two lived separately. Six participants reported additional caregiving responsibilities for other family members. The majority (n=13; 72.2%) felt underprepared for their role. Over a third (n=7; 38.9%) believed their relatives depended on them for daily tasks, with 66.7% (n=12) afraid of what the future holds. The majority (n=16, 88.9%) reported a reduction in emotional well-being and reduced ability to tolerate stress, as their daily life changed to accommodate the self-care needs of the patient. Some (n=12; 66.7%) stated they had less time for other family members. However, despite this, most perceived their caregiving role positively. There was mixed understanding of the ICD with 61% (n=11) aware the device was externally turned off by a programmer, while a third (38.9% n=7) did not know if the device would fire a shock at the end of life. Conclusions Informal caregivers play an important role in the lives of patients with an ICD. These preliminary results show many are unprepared, lacking knowledge and are emotionally challenged as they juggle the change in family dynamics. Importantly, this study provides an insight into the lives of informal caregivers and the potential need for a future intervention.