Being a close relative of a patient with a left ventricular assist device

Abstract

Background:

Every year in Sweden, between five and ten patients receive a mechanical heart pump due to grave heart failure. One such pump is the left ventricle assist device (LVAD). At home they need much support from their family.

Aim:

To investigate the close relatives’ experience of their role in relation to patients with an LVAD.

Methods:

An exploratory study using unstructured interviews with six close relatives of patients with an LVAD. The interviews consisted of one open question: ‘What is it like to be the close relative of a patient with an LVAD?’ The interviews were analysed using thematic content analysis.

Results:

The time before LVAD surgery was described as a time of emotional ups and downs, and compared to ‘being on an emotional rollercoaster ride’. The nearest relatives were in shock, felt anxiety and uncertainty, and wished to be near the patient. The time after surgery was described as a period in which they had to ‘cope with the new situation.’ During this period, the staff was experienced as a resource and the relatives described feelings of gratitude, willpower, and acceptance. The stay at home with a person with an LVAD was described as a ‘new orientation phase’ with limited freedom and the need for respite care. The interviewees expressed the need for support, especially once the patient was at home.

Conclusion:

It is important to also offer long-term professional support to the nearest relatives of patients with an LVAD.