Roles and problems of stroke caregivers: A qualitative study in Yogyakarta, Indonesia

Background: Caregivers play a central role in post-stroke patients care. However, the role of and problems managed by caregivers have not been widely studied, particularly in Indonesia. This study aims to explore the roles and problems of caregivers in post- stroke patients’ care.

Method: This was a qualitative study. Caregivers of post-stroke patients from the homecare clinic of Dr Sardjito General Hospital were purposely selected during January 2017 to June 2018. Focus group discussions were conducted to explore the roles and problems of caregiving.

Results: Themes related to caregivers’ roles were: connecting patients with medical personnel and other family members, maintaining patients’ health conditions by fulfilling basic needs and assisting rehabilitation, as well as maintaining patients’ psychological conditions by encouraging conversation, telling jokes, or recreation. On the other hand, themes related to caregivers’ problems were: lack of knowledge caused by education inadequacy, underappreciated and unconcerned family, suboptimal service including limited physiotherapy and pharmacy resource, and unthorough administration, lack of communication, physical limitations and burnout, as well as uncooperative patients.

Conclusions: Caregivers play essential roles as communicators and help to maintain patient's health conditions. Common problems are related to a lack of knowledge about strokes and a lack of attention from family. Understanding the roles and problems of caregivers may help facilitate better management and increase the quality of life for both patients and their caregivers.