Challenges encountered by patients with end-stage kidney disease in accessing symptom management services: A narrative inquiry.

AIM

To understand the storied experiences of accessing symptom management services of patients with end-stage kidney disease (ESKD) who are receiving maintenance dialysis.

DESIGN

Narrative inquiry.

METHODS

Ten patients with ESKD who were receiving dialysis were recruited at two regional hospitals in Hong Kong and interviewed three times each between July 2017-July 2018 to capture their narratives. The data were analysed using the narrative inquiry approach from the perspective of Levesque's framework of access to care.

RESULTS

Five themes emerged from the participants' narratives. The first theme illustrated access to care as a process by which symptom management needs were met. However, clinicians occasionally identified patients based on their diseases instead of their needs and this process was affected differently by interpersonal and system factors. The themes 'building trust' and 'facilitating communication' described interpersonal factors that were essential to maintaining a constructive patient-clinician partnership. The themes 'balancing efficiency' and 'navigating fragmented system' described system-related factors.

CONCLUSIONS

This study identified the factors that influenced the delivery and/or reception of symptom management services for patients with ESKD who were receiving dialysis. The results suggest that healthcare services should be streamlined based on patients' needs and that this process should address the important elements of trust and communication.

IMPACT

The study's results suggest potential improvements to symptom management services that would enable patients' needs to be addressed in a timely and humanistic manner.