The lived experience of caregivers of persons with heart failure: A phenomenological study

Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy.

To describe the lived experience of the caregivers of HF patients.

A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness.

Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient.

The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

Heart failure; caregivers; lived experience; phenomenology.