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.
Highlights
Caring for stroke survivors is a long-term experience that could influence a person’s quality of life.[1]
In Asian population, the responsibility of caring the post-stroke patients mostly relies on family members, the spouse or offspring who can provide caregiving in home-bound setting.[8]
Caregivers play an essential role in connecting patients with medical personnel and other family members, as well as maintaining the patient's physical and psychological condition
Summary
Caring for stroke survivors is a long-term experience that could influence a person’s quality of life.[1]. Caregivers can be either formal or informal caregivers.[6] Formal care is delivered by professionals, such as nurses, physiotherapists, or speech and occupational therapists. Unpaid informal caregivers are family members, friends, or relatives, paid informal ones are domestic helpers or trained individuals.[6] Caregiving services can be provided in a home-based setting, a rehabilitation facility, or a nursing home.[7] In Asian population, the responsibility of caring the post-stroke patients mostly relies on family members, the spouse or offspring who can provide caregiving in home-bound setting.[8]. Formal care is delivered by professionals, such as nurses, physiotherapists, or speech and occupational therapists. Caregivers play a central role in post-stroke patients' care. This study aims to explore the roles and problems of caregivers in post- stroke patients’ care. 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 version 2
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