Palliative care utilisation: family carers' behaviours and determinants-a qualitative interview study

Most research on starting palliative care focuses on the role of healthcare services and professional carers. However, patients and their family carers may also play a role. Especially opportunities for starting palliative care might exist among family carers. This study focused on family carers by identifying their behaviours and underlying determinants that might contribute to starting palliative care.

A qualitative study with 16 family carers of deceased persons who used palliative care was conducted using semistructured, face-to-face interviews. Constant comparison analysis was used to identify groups of behaviours that influenced starting palliative care and related determinants. The behavioural determinants were matched with concepts in existing behavioural theories. A preliminary behavioural model was developed.

Most reported behaviours regarding starting palliative care were related to communicating with the seriously ill person, other family members and professional carers; seeking information and helping the seriously ill person process information from professional carers; and organising and coordinating care. Determinants facilitating and hindering these behaviours included awareness (eg, of poor health), knowledge (eg, concerning palliative care), attitudes (eg, negative connotations of palliative care) and social influences (eg, important others' opinions about palliative care).

This study identified relevant family carers' behaviours and related determinants that can contribute to starting palliative care. As these determinants are changeable, the palliative care behavioural model that resulted from this study can serve as a basis for the development of behavioural interventions aiming at supporting family carers in performing behaviours that might contribute to starting palliative care.