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. Seven 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. Further research to study the effects of these findings on the quality of life of both patient and their caregiver, as well as how to handle the caregiver issues should be investigated.

The Relationship Between Care Preparedness and Altruism Levels in Caregivers of Stroke Patients

“…Common problems are related to a lack of knowledge about strokes and a lack of attention from the family. 29 No relationship was detected between the caregivers' preparedness to provide care and the level of altruism of stroke patients who participated in the study. Patients are cared for at home by one of their family members because of the strong family ties, opportunities, and traditional structure of families in our society.…”

Effects of Transitional Care Model–Based Interventions for Stroke Patients and Caregivers on Caregivers' Competence and Patient Outcomes

“…The control group's higher perception of personal accomplishment may be due to their previous caregiving experiences. In a qualitative study, caregivers reported that worsening of their patient after stroke led them to experience burnout 46 . Another study reported that the caregiver's education program decreased the burdens of the family caregivers, but these differences were not statistically significant 47 .…”

“…In a qualitative study, caregivers reported that worsening of their patient after stroke led them to experience burnout. 46 Another study reported that the caregiver's education program decreased the burdens of the family caregivers, but these differences were not statistically significant. 47 The failure of the stroke patient to improve should be considered an important risk in terms of caregiver burnout.…”

Information, involvement, self-care and support—The needs of caregivers of people with stroke: A grounded theory approach

“…Family caregivers play a central role in post-stroke care [ 5 ]. However, caregiving is a complex concept and is dependent on the condition of the survivor (i.e., age, impairments and living situations), individual characteristics (i.e.…”