Dunia Keperawatan: Jurnal Keperawatan dan Kesehatan DOI: 10.
20527/dk.
Received June 2025.
Accepted November 2025
@JDK 2025
eISSN: 2541Ae5980.
pISSN: 2337-8212 Caregiver Burden and Family Autonomy in Long-Term Elderly Care:
A Correlational Study Brillian Yunita Adiratna1.
Nur Melizza2*.
Nadin Budiarti3.
Suyesti Yossi4.
Berlyan Surya S5.
Roby Putra Hermanto6
1,2,3,4,5,6
Nursing Science Study Program.
Faculty of Health Sciences.
Universitas Muhammadiyah Malang.
Bendungan Sutami Street No.
Sumbersari.
Lowokwaru District.
Malang City.
East Java.
Indonesia, 65145 *Corresponding email: melizza@umm.
ABSTRACT
The increasing number of elderly people in Indonesia poses a major challenge in the provision of long-term care services.
The elderly tend to experience a decline in physical and mental function so that they depend on the family as the main caregiver.
However, the role as a caregiver can cause psychological, physical, economic, and social burdens known as caregiver burden.
The purpose of this study was to analyze the relationship between caregiver burden and family independence in long-term care of the elderly.
This study used a quantitative approach with a cross-sectional design, conducted from September 2024 to May 2025 in Malang City.
A total of 59 family members who care for the elderly were selected through accidental sampling technique.
The instruments used were the Zarit Burden Interview and the Family Independence Level questionnaire.
Data analysis was performed with the Spearman Rank test using SPSS version 25.
The majority of respondents came from large families .
%) and were female .
%).
Most families showed high independence (KM .
, while caregiver burden was classified as mild to moderate.
Statistical analysis showed no significant relationship between caregiver burden and family independence .
= 0.
r = -0.
Although some caregivers experienced burden, families were still able to care for the elderly Caregiver burden is not the only factor that influences family independence and quality in providing services and long-term care for the elderly.
Emotional support, family togetherness, and cultural values are thought to play a role in maintaining family independence.
Keywords: Caregiver Burden.
Family Independence.
Long-term Care.
The Elderly Cite this as: Adiratna BY.
Melizza N.
Budiarti N.
Yossi S.
Surya B and Hermanto RP.
Caregiver Burden and Family Autonomy in Long-Term Elderly Care: A Correlational Study.
Dunia Keperawatan.
DOI: 10.
20527/dk.
INTRODUCTION
complex and sustainable health services has also increased.
This situation has created a significant economic burden, not only for individuals and families but also for national health .
Aging is a natural process characterized by a decline in physical and social functioning in older adults.
As they age, the elderly tend to experience a decline in health, resulting in increased dependence on others, especially on family members as primary caregivers .
This condition is in line with changes in the demographic structure in Indonesia.
Indonesia has now entered an era of population aging, marked by an increase in the number of people aged 60 and above .
The increase in the global population, particularly in developing countries, the need for The increase in the elderly population is a global phenomenon that is significantly felt in developing countries.
As the elderly population grows, the challenges faced by governments in providing adequate healthcare services become increasingly complex.
According to the Indonesian Statistics Agency .
, the experience an increase.
In 5 decades, it Dunia Keperawatan.
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, with the elderly female population 92% .
, exceeding the elderly male population .
2%).
Currently, the elderly population structure is concentrated in eight provinces with an aging rate of 10%, namely the Special Region of Yogyakarta at 15.
East Java around 52%.
Central Java 14.
North Sulawesi Bali Lampung 10.
22%, and West Java around 8% .
assistance provided can include helping with daily activities, providing emotional support, organizing and taking care of their needs .
The role of caregiver often causes psychological, physical, social, and economic burdens known as caregiver burden.
Caregiver burden is described as the stress experienced by someone who cares for elderly parents, the sick, or people with limitations and disabilities.
According to Zarit .
, caregiver burden is defined as a subjective feeling and negative impact experienced by caregivers in terms of psychological, physical, economic, and social issues.
Additionally, this burden includes other symptoms experienced by caregivers, such as , sleep disturbances, fatigue, anxiety, depression, and social isolation, which can persist even after the caregiving period has ended .
Independence in older adults is influenced by various interrelated factors, such as increasing age, general health conditions including chronic socioeconomic status, as well as mental conditions that include symptoms of depression and cognitive function .
A number of studies show that as they age, older adults tend to experience increased limitations in performing Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL), which are related to a decline in physical and mental function .
, 13, .
A study in Singapore showed that 3% of caregivers experienced stress, 24.
7% experienced an increase in social burden, and disruptions to their daily routines as a result of their caregiving role (Loo et al.
Caregivers caring for patients with dementia have a high prevalence of burden, around 49.
26% .
A study conducted in the Netherlands found that around 39% of elderly caregivers who came to the emergency unit experienced high caregiving burden, which was related to cognitive impairment and patient dependence .
These findings are reinforced by a global meta-analysis stating that these factors play a significant role in the occurrence of ADL and IADL dysfunction in elderly populations in various countries .
Additionally, daily health behaviors, including physical activity levels and the presence of chronic diseases, have also been reported to be associated with older adults' ability to maintain independence in daily activities .
The activities of the elderly are highly dependent on the social support they receive from their families or the people around them.
In this context, family independence is an important aspect in meeting the needs of family members or the elderly without assistance from Many children who have families of their own must care for their parents In these circumstances, families play a central role as the primary providers of emotional, physical, and practical support for older adults in their daily lives .
In this case, families act as Caregivers are individuals who provide assistance to older adults with health or functional limitations.
The Adiratna BY.
Melizza N.
Budiarti N.
, et al.
Caregiver Burden and.
as well as their immediate families.
This situation is common in developing countries, including Indonesia .
families or caregivers.
Therefore, this study aims to analyze the relationship between caregiver burden and family independence in long-term care for the elderly, in order to contribute to the development of independent and sustainable elderly care strategies.
Understanding the relationship between caregivers and family independence is very important for identifying the factors that influence the burden on caregivers and the impact on the quality of elderly In the context of family independence, the ability to meet daily needs without relying on others is very However, the role of the family as a caregiver carries its own burden in caring for the elderly.
The burden experienced by caregivers is a multidimensional response to the pressures felt by caregivers in the form of physical, emotional, and psychosocial .
METHODS
This study applies a quantitative approach with a cross-sectional design to analyze the relationship between independence in long-term care for the The research was conducted from September 2024 to May 2025 in Malang City.
The population in this study was families living with elderly people in long-term care.
The sampling technique used in this study was accidental sampling with the criteria of families living with elderly people, minimum age of 17 years, and willingness to participate as respondents in the study.
The role of the family is very important in long-term care.
If family dysfunction occurs, the caregiver's burden will increase, which will potentially result in a decline in the quality of care for the elderly .
Therefore, it is important to examine the relationship between independence in order to understand the factors that influence the quality of longterm care for the elderly .
When caregivers must bear the entire responsibility without assistance from other family members, the caregiving Therefore, the active role of the family is crucial to support caregivers so they do not feel alone, reduce stress, and improve the quality of care for the elderly .
The instruments used in this study consisted of two questionnaires.
The first instrument was the 12-item Zarit Burden Interview (ZBI), which was used to This instrument covered physical, emotional, and psychosocial dimensions, such as fatigue in caregiving, emotional pressure, stress, and the impact of the caregiving role on the social life and health of caregivers.
Each item is rated using a 0Ae4 Likert scale with the following scoring criteria: Total score range: 0 to 48, 0Ae10: no to mild burden, 10Ae20: mild to moderate burden, >20:
high burden .
This instrument has been tested for validity and reliability and is considered suitable for measuring caregiver burden in this study.
Based on the above discussion, it can be concluded that the increasing elderly population in Indonesia poses a challenge in providing healthcare services and long-term care.
Elderly individuals who experience a decline in physical and mental condition will become increasingly dependent on their The second instrument used the Family Independence Level Questionnaire, which was used to assess the level of Dunia Keperawatan.
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This instrument consists of four levels, namely Family Independence Level 1 to Family Independence Level 4, which describe the family's ability to recognize health problems, make decisions, provide care, and utilize health services.
The data were analyzed using the Spearman Rank statistical test with SPSS 0 software.
adults to elderly, came from large families, and had sufficient educational and economic backgrounds to support their role in caring for the elderly at Table 2 shows the relationship between caregiver burden , and family independence in caring for the elderly.
The majority of respondents with high
(KM
experienced a light burden .
, followed by a moderate burden .
, and only a few experienced a heavy burden .
Meanwhile, in the KM 1 to KM 3 independence categories, the RESULTS AND DISCUSSION Table 1 shows that caregivers in this study were generally women who were Table 1.
Demographic Characteristics of Respondents Respondent Characteristics Frequency Percentage (%) Caregiver age
17 Ae 25
26 Ae 35
36 Ae 45
46 Ae 55
56 Ae 65
>65
Gender Male Female Family Type Nuclear family Extended family Single parent Income Below Minimum Wage Minimum wage Above minimum wage Highest level of education No schooling Elementary Junior High School High School College Ethnic Javanese Madura Religion Islam Catholic Protestan Work Working Not working Adiratna BY.
Melizza N.
Budiarti N.
, et al.
Caregiver Burden and.
Table 2.
Caregiver Burden Level and Family Independence Level Factor
Factor Caregiver Burden
Mild
Moderate High
KM 1
KM 2
KM 3
KM 4
number of respondents was smaller and the distribution of burdens varied.
The statistical test results showed a significant value of 0.
> 0.
meaning that there was no significant relationship between caregiver burden and family independence.
A correlation 044 also indicated a very weak and negative relationship.
In other words, even though some caregivers felt burdened, families were still able to be independent in caring for the elderly.
Sig.
0,741
-0,044
The majority of respondents in this study had been caring for the elderly for a long period of time, ranging from more than one year to more than ten years.
However, the burden of caregiving does not always increase over time.
In some situations, the burden can remain the same or decrease, depending on the condition of the elderly and the caregiver's situation .
These findings are in line with the conditions in Indonesian society, where family ties encourage families to continue providing care for the elderly.
The results of the study indicate that there is no significant relationship between the burden felt by caregivers and the level of independence of families in caring for the elderly .
= 0.
This finding is in line with previous studies which show that the burden of caregiving is not entirely determined by the level of independence of the elderly , but is more influenced by health conditions or chronic diseases .
Thus, family independence is not the only determining factor in the perception of the burden felt by caregivers.
In this study, most respondents came large families and were predominantly women who had an emotional closeness to the elderly they cared for.
In large family structures, the responsibility of caregiving is often not borne by one individual alone, but is shared collectively, thereby lightening the burden.
A study shows that women from migrant communities, such as the Ahmadiyya Pakistanis in Norway, often become the primary caregivers for the This role is influenced by family responsibilities, religious teachings, and cultural values.
These findings confirm that gender roles and social norms have a major influence on patterns of elderly care in various cultural settings .
In general, the burden experienced by caregivers does not always reduce the quality of care provided by the family.
This is due to several supporting factors.
Research by Cai et al.
shows that familism and social support can act as mediators, enabling caregivers to provide optimal care despite facing Family support and strong family ties help caregivers manage the stress that arises while performing their roles .
Cultural and religious factors also play an important role in explaining the findings of this study.
Almost all backgrounds that uphold the value of respect for elders.
This value is reflected in the strong practice of mutual cooperation and family solidarity.
Dunia Keperawatan.
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group was considered to be more emotionally prepared to face the demands of elderly care .
Emotional togetherness are key elements in the sustainability of elderly care.
The social support provided by families generally includes emotional support, appreciation, practical assistance, and the provision of information, reflecting the strong cultural values in Indonesian society, where caring for parents is seen as a moral and social responsibility inherent in family life .
In addition, around 70% of them have an income above the minimum wage, which supports them in meeting care needs and accessing health services.
Furthermore, most caregivers in this study have an income above the regional minimum wage, making them relatively more capable of meeting elderly care needs and accessing the necessary health This condition is an important resource for families in maintaining the sustainability of care.
In this context, religious values also contribute to shaping caregivers' coping Research on Islamic coping shows that faith and religious teachings play a role in strengthening caregivers' psychological resilience when facing severe emotional stress .
Similarly, the appreciation of local cultural values, such as those developed in Javanese society, also influences how individuals interpret life experiences, including the process of caregiving and loss.
These findings indicate that the burden of caregiving arising from the condition of the elderly does not necessarily reduce the quality or independence of care when caregivers receive adequate social support.
The involvement of other family members, particularly through good communication and a clear division of roles, helps reduce the psychological pressure felt by caregivers, such as stress and emotional exhaustion.
This family support plays a role in managing caregivers' psychological responses to caregiving demands, enabling them to cope with the burden in a more adaptive manner .
Thus, an optimally functioning family can act as a independence in elderly care even when caregivers face considerable caregiving demands .
The cultural value of nrimo ing pandum reflects an attitude of acceptance towards the conditions faced, which can help ease the emotional burden of caregivers and strengthen their resilience in providing long-term care .
However, the effectiveness of cultural and religious support is also influenced by the individual characteristics of caregivers and the availability of socioeconomic resources within the In addition, adaptive coping strategies and acceptance of the role as caregiver as a form of family responsibility can reduce the perception of the burden Adaptive coping strategies, such as focusing on emotions positively, seeking social support, and giving new meaning to the caregiving experience, help caregivers become mentally stronger in carrying out their roles with a better quality of life .
Emotional Most caregivers in this study were aged 46Ae65 years, a group that generally has better emotional maturity in performing the role of elderly caregiver.
This finding is in line with a study in Taiwan which reported that the majority of caregivers were in the 50 to 59 age range, with an average age of 53.
1 years, and this age Adiratna BY.
Melizza N.
Budiarti N.
, et al.
Caregiver Burden and.
support from other family members and flexibility in the decision-making process also contribute to lightening the caregiver's responsibilities, so that the burden felt is not too heavy.
norms and values of filial piety towards their parents.
LIMITATIONS
The results of this study need to be interpreted with consideration of the existing limitations.
Respondents in this study exhibited relatively homogeneous characteristics, with almost all caregivers being of Javanese ethnicity and Muslim This condition limits the generalizability of the findings, as the results of the study are strongly influenced by a specific cultural and social context and may not necessarily reflect the experiences of caregivers with In a study by Zhang et al.
, it was shown that family resilience and perceived social support play an important role in reducing caregiver burden and increasing caregiving These findings emphasize the need for interventions that not only focus on the individual caregiver but also aim to strengthen family resilience and the social support system as part of efforts to optimize long-term care .
In nursing practice, nurses play a strategic role through comprehensive assessments of family conditions, providing education on long-term care, and facilitating families in accessing available social support resources.
In addition, most caregivers had incomes above the regional minimum wage and came from large families, indicating the availability of relatively good economic and social support.
This condition has the potential to cause sample bias, as caregivers with more adequate resources tend to be able to maintain family independence even when faced with the burden of caregiving.
This may be one explanation for why the relationship between caregiver burden and family independence did not show significant results in this study.
Thus, even though caregivers face pressure in caring for the elderly, strong family support, cultural and religious values, and stable economic and psychological conditions are protective factors that support family independence in long-term care.
The role of nurses in strengthening these factors is important to ensure sustainable and family-oriented However, insignificant results also need to be reviewed for possible romanticization Researchers are aware of the potential for respondents to give socially desirable answers.
This study also has limitations in its cross-sectional design, which cannot explain cause-and-effect relationships, as well as a sample size that is not representative of the wider population.
In the Indonesian cultural context, complaining about the burden of caring for parents is often perceived as taboo or Therefore, the low reported burden scores may not only reflect the role of culture and religion as protective factors, but also reflect the respondents' reluctance to reveal their actual
difficulties in order to maintain social
RESEARCH ETHICS
This study has obtained ethical approval with ethical number E.
a/011/KEPKUMM/I/2024.
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CONFLICT OF INTEREST
There is no conflict of interest in this ACKNOWLEDGEMENTS The author would like to express their Universitas Muhammadiyah Malang for the support and opportunity provided to conduct this Gratitude is also extended to the elderly caregivers who were willing to spare their time and participate in the CONCLUSION This study shows that the burden felt by caregivers is not the only factor that affects the independence of families in providing long-term care for the elderly.
Despite facing pressure in the caregiving process, many families are still able to carry out this role independently with the support of culture, extended family Further recommended using a longitudinal design and considering additional variables such as social support and On the other hand, health workers are caregiving skills training, and emotional support for families.
The formation of support groups in the community and the detection of caregiver burnout are also important to maintain the sustainability and quality of care for the elderly in a family environment.
REFERENCES