‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context
This Auckland-based group of researchers explored family and whānau carers’ experiences of the financial impact of caring within a palliative care context. Semi-structured interviews were held with 30 family/whānau caregivers who were either currently caring for a person with palliative care needs or had done so in the past year. The data were analysed using narrative analysis, which identified impacts and costs at the personal, interpersonal, sociocultural and structural levels. Participants reported significant costs involved in caregiving, resulting in debt for some people or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, there was confusion among caregivers as to what statutory (government) help was available in the context of ‘being palliative’.
A really important and considered description of the wider ripples of impact that caregiving has for whānau.
Reference: Palliat Med. 2015;29(6):518-28