Caring for carers of people with advanced cancer at hospital discharge (CARENET): A single-arm open label feasibility trial.

Abstract

Objectives: Carers are critical to support discharge home from hospital at end of life yet remain under-represented in health service initiatives to assist this transition. A carer-focused intervention embedded into practice may facilitate hospital discharge. This open-labeled, single-arm phase 2 study aimed to determine the feasibility of (1) delivering a multi-staged intervention (CARENET) to carers of advanced cancer patients in a hospital setting and (2) the study design to inform a phase 3 trial.

Methods: CARENET, delivered before and after discharge to address carer support needs, was tested in an Australian specialist cancer hospital. Eligible participants included carers of advanced cancer inpatients with planned discharge home. The primary outcome was intervention and trial feasibility (recruitment and adherence). Secondary outcomes were eligibility and effects of intervention on outcomes including carer preparedness.

Results: Of the 382 potential patient-carer dyads, 25 were recruited within required time frames. The intervention adherence outcome feasibility threshold of 80% of carer participants completing all 3 core components of CARENET was not achieved (60% completion). Trends in improvement in overall carer levels of preparedness were observed from baseline to discharge home (n = 12; mean [95% CI]) 0.5 [-0.0007, 1.007]). However, a downward trend in preparedness to provide emotional care after discharge was observed (n = 12; mean [95% CI] 0.25 [-0.30, 0.80]).

Significance of results: Delivering all elements of the CARENET intervention to address carers' needs in the discharge planning context was not feasible. However, some elements were feasible, including identifying and responding to carer need, whilst completing elements after discharge were less feasible. Findings can be explained by problems with adherence, eligibility, and clinician barriers to fitting a multi-staged carer intervention into an acute healthcare setting. Future research should test a more adaptable intervention and delivery model that is accessible to all carers across and compatible with acute care settings.