Family carers' experiences regarding patient transfers between care settings in palliative care: an interview study.

Background: To understand how family carers experienced the illness trajectory of their next of kin related to transfers taken place between care settings in palliative care, their experiences and attitude regarding the transfer decision and their experiences regarding patient transfers across settings.

Methods: Semi-structured interviews were held with 21 family carers. A constant comparative approach was used to analyze data.

Results: Three themes were identified after data analysis: (I) patient transfer dynamics, (II) experiences regarding the changed care environment and (III) impact of the transfer on the family carer. The dynamics of the patient's transfer were affected by the balance between the care provision (professional and informal care) and the changes in the patient's needs. Experiences regarding patient transfers strongly varied depending on the setting and were based on the personnel's conduct and the quality of receiving information. Study results revealed shortcomings in perceived inter-professional communication and continuity of information during a patient's hospitalization. Concomitant feelings of relief, anxiety or feeling insecure could arise in situations of a patient's transfer.

Conclusions: This study highlighted the adaptability of family carers when caring for their next of kin with palliative care needs. To support carers in coping with their role as caregivers and to share the responsibility of caregiving, involved healthcare professionals should timely evaluate family carers' preferences and needs and adapt the care organization accordingly. A pro-active attitude, which anticipates on the possibility of an impending decompensation of the family carer, is recommended. When the decision for a patient's transfer is taken, multiple factors influenced the choice of the care setting. Healthcare professionals need to take these factors into account when discussing, with patients and carers, the need for a transfer. Continuity of information can be improved. Further development and evaluation of interventions, aimed at improving informational continuity can be recommended.