Informal caregivers’ experiences of care dependency in patients with advanced cancer treated palliatively

Abstract

Background: Being a carer for a dependent person entails serious responsibilities, often with physical, psychological and emotional consequences. As a terminally ill cancer patient enters the palliative phase, informal caregivers (ICs) need support to cope with the growing care dependency (CD) needs of the patient. Aim: This study aimed to explore informal caregivers’ experiences of CD in patients with advanced cancer treated palliatively. Research design: A qualitative research design with an Interpretative Phenomenological Analysis (IPA) approach. Participants: Purposive sampling of ICs caring for patients with advanced cancer being treated with palliative intent at home but who have had at least one admission to the in-patient palliative unit (IPU) during the last 12 months. Method: Data was collected through recorded semi-structured interviews and transcribed verbatim. Analysis was guided by the IPA approach. Results: Findings resulted in three main themes, namely (1) The experience of being an IC, (2) ICs’ experience of healthcare services, and (3) Taking life one day at a time. Conclusions: The findings reflected the helplessness, and isolation that ICs experience when confronted with the patients’ CD needs. Notwithstanding, most coped well with the emotional turmoil by adopting various survival techniques. ICs successfully exploited several informal support channels as an integral part of their coping strategy. Participants highlighted issues with formal support channels and unveiled the practical challenges in accessing various services required by patients. Hence, the principle recommendations were to introduce a system whereby different services are coordinated under one roof, as well as establish more accessible medical backup which could, in turn, avoid re-admissions to the IPU.