What do family caregivers of patients with life-threatening diseases need from healthcare professionals? A qualitative study.

OBJECTIVES

To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient's partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories.

DESIGN

Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed.

SETTING/

PARTICIPANTS

63 family caregivers of 65 patients were interviewed. Of the patients, 36 (55%) had COVID-19 and 29 (45%) had other life-threatening diseases (eg, advanced cancer, dementia). The majority of family caregivers were women (83%) and children of the patient (56%).

RESULTS

Three themes were developed regarding family caregivers' core needs across their different roles: (1) 'feeling seen and valued', (2) 'experiencing trust in the provided care' and (3) 'experiencing guidance and security'. Actions of healthcare professionals that meet those needs relate to their contact and relationship with family caregivers, information provision, practical and emotional support, the care for the patient and facilitating the connection between family caregivers and patients.

DISCUSSION: Healthcare professionals should be trained in meeting family caregivers' core needs, in which their (collaborative) relationship with them plays an important role. Efforts to meet the core needs should be incorporated into healthcare organisations' workflows, and future research should investigate related barriers and facilitators.