Roles and Problems of Stroke Caregivers: A Qualitative Study in Yogyakarta, Indonesia

Abstract

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, 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.

Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study

“…This demonstrated that, despite the widespread use of the Internet, many caregivers continued to seek information and knowledge in managing stroke patients, which was lacking, incomplete, and difficult to obtain from traditional sources, primarily rehabilitation centers. Previous research found that a lack of specific knowledge and information on the illness and the patient's issues and needs were indeed common issues for family caregivers [37][38][39]. This includes social support, such as the availability of welfare aids, which is commonly associated with a lack of longterm support or stroke aftercare [40] and a perceived lack of attention regarding patients' social recovery [41][42][43], as revealed by this study.…”

Correlation Between Knowledge and Self-Efficacy with Family Skills in Exercising Range of Motion for Post-Stroke

“… 7 , 8 Based on research from the hospital, there are suboptimal services due to limited physiotherapy facilities and resources. 9 In the hospital, physiotherapy is carried out by officers during working hours; then, the staff teaches the family to be able to do it. However, when the patient has returned home, the Range of Motion (ROM) exercise is not carried out by the patient’s family due to the lack of knowledge and family self-efficacy.…”

“…However, when the patient has returned home, the Range of Motion (ROM) exercise is not carried out by the patient’s family due to the lack of knowledge and family self-efficacy. 9 It was regarding the concepts and techniques for doing ROM exercises, even though they must be done as early as possible and as often as possible. Not all families can perform ROM exercises on patients after they go home.…”

“…10 This is because the family lacks knowledge and has low self-efficacy, which impacts the family’s abilities and skills in doing ROM exercises. 9 , 10…”

“…10 This is because the family lacks knowledge and has low self-efficacy, which impacts the family's abilities and skills in doing ROM exercises. 9,10 Family plays a vital role in the recovery process and in optimizing the motor skills of post-stroke clients. 10 The family is the primary support system for direct service providers to every condition (health-sickness) of family members.…”