The Challenge of Gaining Access to Informal Caregivers in the AdvancedHeart Failure Population in Ireland

Aim: Explore the palliative care (PC) needs and quality of life (QoL) of patients with heartfailure (HF) and their caregivers on the island of Ireland.Methods: A sequential confirmatory mixed methods study consisting of a postal survey withpatients and caregivers followed by a semi-structured interview with caregivers wasundertaken. Databases within HF clinics in Northern Ireland and the Republic of Ireland weresearched to identify advanced HF patients. Patients deemed physically and mentallysuitable, ≥18 years, New York Heart Association Classification III-IV, ejection fraction <40%and(i) brain natriuretic peptide > 400 pg/ml or(ii) ≥ 1 unscheduled hospital admission in the previous 12 months or(iii) on IV diuretics during the previous 12 months were invited to take part.Access to the caregivers was via the patients. Data was collected on demographics,depression, anxiety, QoL, patients’ perceived social support and illness beliefs, caregiverburden, needs assessment and preparedness for caregiving.Results: The postal survey response rate was 50% and 36% for patients and caregiversrespectively. Given that access to the caregivers was via the patients, caregiver’s participationwas mediated not only by the patient’s gatekeepers but additionally by the patientsthemselves.Conclusions / lessons learned: Advanced HF is a population who would benefit from PCservices and it is widely accepted that caregivers play a vital role in facilitating the care andtherefore the carer’s experiences is a research priority. Albeit, undertaking research in thispopulation of caregiver’s is extremely challenging. Currently in Ireland, people caring for HFpatients are not widely known to services and given the number of gatekeepers tocaregivers, when recruiting via patients, gaining access to this population of carers isproblematic. In order to adequately explore caregiver’s experiences more innovativeapproaches are needed to recruit this group on to research studies.