BURDEN OF FAMILY CAREGIVER IN CARING FOR STROKE PATIENTS: A MIXED METHOD RESEARCH

Stroke is the fifth leading cause of death in the world, stroke does not only have a negative impact on patients but also has an impact on family caregivers. This study aims to describe the burden experienced by family caregivers in caring for stroke patients. This research uses a mixed method with sequential explanatory approach. The research was conducted from August to October 2019 involved 106 family caregivers using a purposive sampling technique. Burden experienced was measured with the Zarit Burden Interview (ZBI) questionnaire. Quantitative data analysis was performed by SPSS and qualitative data analysis with Opencode. Burden experienced was at a mild level, there was a significant relationship to education variables (p = 0.007, r = -0.297), family relationships (p = 0.001, r = 0.001), number of caregivers (p = 0.001, r = 0.364), and the patient's duration of stroke (p = 0.006, r = -0.322). There are three themes in this study, that is difficulties in caring, motivation for caring and sources of support. Conclusion: Although quantitatively the family caregiver experiences a mild burden, qualitatively the family caregiver reports complaints in caring for almost all aspects, so treatment is needed to resolve this burden.


Introduction
Stroke is a condition of neurological dysfunction caused by neurological infarction or rupture of blood vessels (Sacco et al, 2013) .Stroke is caused by impaired cerebral blood flow which is characterized by histopathological changes in the area of the brain that result in nerve death .This causes physical, cognitive, and behavioral changes in patients, according to the location of the injury to the brain (Caro et al., 2018).Stroke is a health problem at the global level which is the fifth most common cause of death and disability in many developing countries such as Asia (Turana et al., 2021).The highest incidence of stroke in Asia occurred in Japan, namely 422 cases per 100,000 inhabitants.Taiwan is the second highest country in stroke cases in Asia, namely 330 per 100,000 people.Malaysia is the country with the lowest stroke cases in Asia with a stroke incidence rate of 67 cases per 100,000 people (Venketasubramanian et al., 2017).
In Indonesia, there were 479,243 Indonesians who had suffered a stroke, or around 46.1% of the total number of diseases in Indonesia (Indonesian Ministry of Health, 2018).The prevalence of stroke patients continues to increase every year..The prevalence of stroke in Central Java province in 2017 was 12.41 per 1,000 population, consisting of non-hemorrhagic stroke of 9.36 per 1,000 population and hemorrhagic stroke of 3.05 per 1,000 population (Setyopranoto et al., 2019).These results have increased from 2016, where in that year there were 5.58 non-hemorrhagic stroke sufferers per 1,000 population and 2.68 hemorrhagic stroke sufferers per 1,000 population (Central Java Health Office, 2017).
In Indonesia there has not been much research related to the burden experienced by family caregivers in caring for stroke patients.Previous studies related to stroke focused more on patients, while research on families who cared for stroke patients (family caregivers) had not been Copyright ©2023, Nursing Journal of Respati Yogyakarta, p-ISSN: 2088-8872; e-ISSN: 2541-2728 carried out much.Therefore researchers are interested in researching the burden of family caregivers in caring for stroke patients.
The purpose of this study is to determine the burden experienced of family caregivers in caring for stroke patients, to determine the burden based on the demographic characteristics of family caregivers, the burden of family caregivers based on the characteristics of stroke patients and the level of burden experienced by family caregivers in caring for stroke patients.

Method
This research is a mixed method research with a sequential explanatory research design.This research was conducted from August to October 2019.The number of respondents in this study were 106 respondents who were family caregivers for stroke patients undergoing treatment in the Dahlia ward (Stroke Unit) and Aster 5 Ward (Internal and neurological disease Unit) at the General Hospital Tidar City of Magelang, Indonesia.
The data collection used purposive sampling technique.The sample was taken based on inclusion criteria, while the inclusion criteria in this study were over 18 years of age, accompanying patients for at least one hour a day, able to communicate well, and willing to be respondents.The exclusion criteria in this study were family caregivers with psychological disorders.The instrument used to measure the burden on family caregivers used the Indonesian version of the Zarit Burden Interview (ZBI) 22 items.Quantitative data analysis by SPSS .Qualitative research results analysis with Opencode.
This research has received a research permit from Tidar Hospital Magelang and approval for research ethical feasibility from the ethics commission of FK-KMK UGM issued on August 21 2019 with number KE/FK/0979/EC/2019.The problem or difficulty that arose during this study was that not all stroke diagnoses were listed in the medical records, so researchers needed time to ask health workers.For participants who were in the Aster Ward, several participants were single caregivers so that participants refused to be interviewed because they could not leave the patient alone, so the researcher had to make a time contract with the participant before the interview.The weakness of this research is that it does not examine the patient's length of stay which may have an impact on the burden experienced by family caregivers.

Quantitative Research Results
Table 1 shows that the age of the respondent is 26-45 years (54%), female (71.7%), has a high school education level (42.5%), works as a private employee (33.0%) and has an income below the Magelang Regional Minimum Wage (57 %).Most of the family caregivers have a biological child relationship (47.2%), the number of caregivers is 2-3 people for 1 stroke patient (59.4%) and the caregivers live in the same house with the patient with a duration of caring for more than 6 hours each day.Based on patient characteristics, the majority were male (55%), the age of stroke patients was in the range of 14 to 85 years or an average age of 58.9 years, they were in the elderly age category, namely 63.3% and the duration of stroke was less than 6 month (48.1%).The majority of patients experience a stroke for the first time, namely as much as 80.2% and depend on other people to perform ADLs (71.7%).The relationship between the characteristics of family caregivers and patients with the burden they experience.Table 3 shows that family caregiver education, family relationships, number of caregivers, and duration of caring for patients are related to the burden experienced by family caregivers.The variable level of education obtained a correlation coefficient of -0.297 which can be interpreted that the higher the family caregiver's education, the burden experienced is lower, as well as seen from the significance value obtained p-value = 0.007, it can be concluded that there is a relationship between the level of education and burden experienced by the family caregiver.The family relationship variable has a strong correlation with the incidence of burden (p-Copyright ©2023, Nursing Journal of Respati Yogyakarta, p-ISSN: 2088-8872; e-ISSN: 2541-2728 value 0.001).incidence of heavy burden experienced by biological children of stroke patients (7.5%).The duration of caring for patients with a p value of 0.001 and r value of 0.712 means that family caregivers who care for stroke patients with a duration of ≥ 6 hours per day experience a heavy burden, the longer the duration of caring for the patient, the higher the burden experienced by the patient.

Burden level of family caregivers
The patient's demographic characteristics do not correlate with the burden experienced by the family caregiver except for the patient's length of illness.the length of time caring for patients is considered to have a significant relationship to the burden experienced by family caregivers.the value of r -0.322 indicates that there is a negative relationship to the length of caring for the burden experienced by family caregivers.This shows that the longer the patient is sick, the higher the burden they will experience.

Qualitative Research Results
General description of interview subjects Interviews conducted with seven participants revealed 3 themes, namely difficulties in caring for, motivation for caring for and sources of support.

Difficulty Caring
All participants in this study revealed difficulties in treating stroke patients.Researchers divided the difficulties experienced by the participants into four categories, namely physical complaints, mental unrest, financial difficulties and social limitations.

a) Physical complaints
Participants revealed that they experienced physical complaints while caring for stroke patients, physical complaints expressed by participants such as a lack of manpower to care for, lack of sleep, fatigue and disease recurrence.This was expressed by the participants as follows: "... sometimes I can sleep, sometimes I can't, there are so many people passing by..." (P1, 60 years old, wife)

b) Discomfort of the soul
The mental unrest experienced by the participants was in the form of worry about the patient's disease prognosis, fear of the patient's death and other feelings that are difficult to express.These conditions were expressed by participants as follows: "Yes..that one thing I'm afraid of (death)" (P3, 48 years old, wife)

c) Cost difficulties
Five participants in this study revealed financial complaints felt by family caregivers since the patient had a stroke.This was expressed by the participants as follows: "... if it's (cost) that's heavy, it's been a week here (hospital) no family has helped, while I'm not working" (P7, 19 years old, daughter)

d) Limited socialization
Limitations in socializing felt by participants such as not being able to participate in activities in the surrounding environment, unable to attend invitations from relatives, recitations, and visiting parents.This was expressed by the participants as follows: "....make it impossible for (the patient) to be left behind...not to mention if there is an event, there are gatherings (meetings).. well, it's just a hassle" (P3, 48 years old, wife).

Motivation to care
All participants expressed their underlying motivation for caring for families who had suffered a stroke.The researchers divided these reasons into three categories, namely as a form of devotion, affection and belief.

a) Devotion
Participants stated that caring was an obligation for the wife and an opportunity to be devoted to the parents who had raised the participants.This was expressed by the participants in the following quote:

Discussion
Most of the family caregivers (FC) who care for stroke patients are female (71.7%).This is in line with research conducted by (Vidyanti et al., 2022) which states that the majority of family caregivers in Indonesia are female and have a relationship as daughter (47.2%) ), another study conducted Tosun & Temel, (2017) which states that parenting is mostly done by female family members, this is because caring is only woman's role.Although quantitatively there was no correlation between the caregiver's gender and the burden experienced (p value 0.30), in fact some female caregivers said they had difficulty and had limited staff to care for patients so they needed help from other people such as other patient attendants and nurses.
The majority of family caregivers' relationships with stroke patients are as children (47.3%).Caring for and providing assistance to parents is a custom that has deep roots in Indonesian society.This is in line with the qualitative research conducted that caring for parents is a child's obligation to repay parents who have cared for them when they were young.There is a negative and very significant relationship between family relationships and the burden experienced by family caregivers (r = -0.328,p value 0.002 ).The majority of the burden experienced by families is related to unclear information related to the prognosis of the patient's disease and fear of death from the patient.
The age of the family caregivers in this study ranged from 18 to 67 years and almost half of the total respondents were in adulthood with the majority having high school education (37.6%).FC age has a weak correlation to burden on family caregivers (p value 0.05).The age of the adult family caregiver is considered capable and proficient in making decisions related to the care to be performed on stroke patients, while the level of education is considered to influence the family caregiver in obtaining information and knowledge related to the care of stroke patients.Most of the family caregivers had high school education (37.6%) and there was a very significant correlation between education and the burdens experienced (r=0.315,p=0.005).The results of this study are in accordance with qualitative data conducted by Zhu & Jiang, (2019), family caregivers with elementary school education tend to be burdened and lack understanding regarding the care to be carried out.Copyright ©2023, Nursing Journal of Respati Yogyakarta, p-ISSN: 2088-8872; e-ISSN: 2541-2728 Most of the family caregiver jobs in this study were private employees, namely as many as 32.3% and more than half (57%) earned below the regional minimum wage in Magelang City.based on interviews conducted with family caregivers, families find it difficult to pay for treatment of stroke patients even though some of the costs of treatment at the hospital are covered by health insurance.This is in accordance with research conducted by Mishra et al., which said that financial costs are closely related to the burden experienced by family caregivers in caring for stroke patients.
The majority of family caregivers cared for stroke patients with a duration of more than six hours per day as much as 72% and the duration of stroke patients was less than six months with an average number of strokes of 1.67 attacks.Based on the results of the bivariate analysis, it was found that there was a relationship between the length of time the patient had suffered a stroke and the burden experienced by the family caregiver with a p value of 0.02.The results of this study are in line with research conducted by (Vincent-onabajo et al., 2018) in Nigeria, the results of this study stated that there was a significant relationship between the duration of care and the burden experienced by family caregivers (p value <0.05).Likewise with the research conducted by Jaracz et al., regarding the burden experienced by family caregivers, in this study it was found that the main caregivers who cared for stroke patients for more than six hours per day tended to experience the burden.Family caregivers who care for stroke patients for more than 6 hours per day are prone to physical problems such as fatigue, difficulty sleeping and resting.
Patient characteristics are considered to contribute to the incidence of burden experienced by family caregivers (FC).In quantification there were no patient characteristic variables related to the burden on FC except for the length of time the patient had a stroke (p = 0.001).The duration of stroke patients has a significant relationship to the burden experienced by FC.This is because the majority of family caregivers who care for patients for more than 6 months tend to experience boredom, feelings of pressure and embarrassment because they are considered unable to care for patients properly.This research is in line with the research conducted.

Conclusions and suggestions
The conclusion of this study is that there is a family caregiver who cares for this patient, that stroke has a light burden level.There is a relationship between family caregiver education, number of caregivers, duration of caring for patients with the burden experienced by family caregivers.There are three themes related to the burden experienced by family caregivers, namely 1) difficulties experienced by caregivers 2) caring motivation and 3) sources of support and 4) Norms subjective

Acknowledgments
We would like to thank to every individual, respondents and institutions who had contributed for the complection of this research.

Table 2 .
Level of Family Caregiver Burden

Table 3 .
The relationship between the characteristics of family caregivers and patients with the burden they experience

Table 4 .
General description of the interview subject