Experiences of non-family paid helpers providing palliative care to stroke patients : the toll of professional informal caregiving in a job lacking recognition

Abstract

Background: Employing non-family paid helpers has become a prevalent practice across North America, Europe, and Asia, which families adopt to alleviate the stroke care burden, allowing family to take a break from their obligations and perform other social activities. However, paid helpers’ experiences of providing palliative care to stroke patients are under-explored. This study aimed to explore the caregiving experiences of non-family paid helpers providing palliative care to stroke patients. Method: A qualitative descriptive study was undertaken using purposive sampling and semi-structured individual in-depth interviews. Thematic analysis was used for data analysis. Results: Seventeen participants (mean age: 51.23 years) were included, predominantly being female (88%), and their caregiving experiences with patients ranged from four to 26 years. Participants shared that monetary compensation offset the exhaustion, familial and health sacrifices of palliative caregiving. They emphasized emotional self-management through accepting and coping or avoiding and distancing, and appreciated rewarding appraisals from stroke patients and family members. They also expressed a lack of recognition from the public, being invisible to the healthcare system/professionals, and insecurity in employment rights. Conclusions: Findings support the need for governmental initiatives to subsidize families in employing helpers to provide palliative care. Helpers perceived monetary compensation and a reciprocal caregiving relationship as the primary motives for providing care. Public recognition of this role as a helper in caregiving, contractual employment rights, and being recognized by the healthcare system and healthcare professionals are considerations in promoting quality care and alleviating a health care burden. The findings may contribute to further understanding of the experiences of non-family paid helpers in a job lacking recognition when delivering palliative care in a hospital for stroke patients. Evidence-based interventions that enhance reciprocity and recognition should be considered as part of the global initiatives to support paid helpers in palliative care.