Abstract
Background:
Family caregivers care for their family members with diseases and encounter significant changes in their daily lives, but few studies have explored it.
Aim:
This study aimed to identify the factors associated with the quality of life in family caregivers.
Design:
This study adopted a cross-sectional design. Questionnaires were used for data collection. Data were analyzed using SPSS 23.0.
Participants:
Eight-seven high-burden family caregivers and 87 non-high-burden caregivers were recruited.
Results:
Female caregivers are the primary family caregivers. High-burden family caregivers’ self-efficacy and quality of life were significantly lower than those of non-high-burden caregivers (p < .05, p < .001). Family caregivers’ self-efficacy and burden explained 29% to 43% of the variance in different domains of quality of life among family caregivers.
Conclusion:
Self-efficacy and high burden are associated with quality of life in family caregivers.
Keywords: quality of life, correlational research, gerontology, long-term care
What is Already Known About the Topic
The surge in older adults suggests growing demands for care.
Elderly family caregivers are a growing issue.
What This Paper Adds
The proportion of family caregivers who participated in supporting groups is low.
Most family caregivers were female and were care recipient’s children or daughter-in-law.
Implications for Practice, Theory, or Policy
High-burden family caregivers need psychological support. Psychological supporting groups or activities can be designed for family caregivers.
Self-efficacy is associated with quality of life in family caregivers. It is recommended that activities of self-efficacy can be designed for family caregivers.
Future research can employ qualitative interviews to gain a more comprehensive understanding of the caregiving journey.
Introduction
With the advancement of medical care and the living environment, the life expectancy of humans has increased, resulting in a continuous expansion of older adults globally. The number of people aged 60 years and older globally was 1 billion in 2019, which will increase to 1.4 billion by 2030 and 2.1 billion by 2050 (World Health Organization, 2020). The surge in older adults suggests growing demands for care. In the context of family, a family member suffering from a disease that results in incapacity and the requirement of care from the family imposes great changes to the life and burden to the family caregiver. Caregiver burden is the caregiving experience with a complex response to physical, psychological, emotional, social, and financial stressors (Kunkle et al., 2021). High-burden caregivers might be at risk of adverse mental health, have worse life satisfaction, and report higher levels of stress than non-caregivers. (Ekström et al., 2020).
There were approximately 260 million family caregivers around the world in 2021 (International Alliance of Carer Organizations, 2021). Britain has been one of the first countries to study caregivers’ critical role. Approximately 20% of the population in Britain cares for a family member (Carers UK, 2023). To support the caregivers of those who may be physically and mentally disabled, ill, or elderly, Carers UK provides assessments for health, work, interpersonal relationships, and social activities and assists them with services and opportunities for monetary benefits (Carers UK, 2023). In Australia, family caregivers account for 10.6% of the population in 2021 (International Alliance of Carer Organizations, 2021). The nation lists unremunerated young caregivers as high-burden caregivers, providing them with coaching, resources, networking events, and annual scholarships (Australian Government Department of Social Services, 2023). In Taiwan, there are about 760,000 families who have one or more family members with disabilities, dementia, or mental and physical challenges; 30% of these families hire foreign caregivers, less than 20% use long-term care resources provided by the government, and more than half choose caregiving provided by a single family member (Taiwan Association of Family Caregivers, 2018), indicating that the family caregivers are the primary source in Taiwan. These data have demonstrated the significant contribution of family caregivers to the field of care work. Additionally, some countries have attached great importance to high-burden family caregivers and provided benefits to support them, showing that these high-burden family caregivers are a group that requires solicitude.
One study has shown that the physical and mental quality of life are worse in family caregivers than in family members who do not care for others (P. Y. Chen et al., 2017). By contrast, a study found that family caregivers score the highest in the physical health domain of quality of life, female caregivers’ mental health is worse than male, and spousal caregivers and full-time caregivers are significantly lower than others in all domains of quality of life (Sie et al., 2023). These findings suggested that the quality of life in family caregivers is an important issue because it impacts the quality of care. Moreover, some studies have indicated that the quality of life in caregivers is associated with care burden (Kim et al., 2022). Over 70% of family caregivers express distress and stress while caring for a family member (Ministry of Health and Welfare, 2017). One-third of family caregivers described themselves as bearing high burdens (Swartz & Collins, 2019), revealing that family caregivers are an overlooked population requiring support. In summary of the studies mentioned above, family caregivers’ burden and quality of life are issues that need to be addressed. Further research is needed on factors associated with family caregivers’ quality of life.
In Taiwan, people aged 65 and over accounted for 17.6% of the population in 2022, corresponding to the definition of an aged society classified by the WHO (National Development Council, 2022). Cultural customs in Taiwan promote filial piety, which prompts family members to engage in family care by themselves (W. P. Wang et al., 2021). Taking care of a family does not have a set off-hour. Long-term caregiving can impose significant stress on the caregiver. If the stress is not relieved or adequately addressed, the caregiver can be the next member requiring care from others. Some researchers have mentioned many tragedies originating from the family caregivers’ unawareness and lack of action to call for help (D. A. Chen et al., 2019). The starting point of many caregiving tragedies derives not from the care recipient but from the caregiver, and many of these caregivers are bearing moderate to high burdens (Rosas & Neri, 2019), implying that family caregivers are a group that requires social attention. The limited number of studies on high-burden family caregivers highlights the need for further exploration. This study aimed to explore the factors associated with the quality of life in family caregivers.
Methods
Design
This study adopted a cross-sectional design. Data were collected through questionnaires between June and September 2022.
Sample and Setting
Purposive sampling was used to recruit participants from Taoyuan city in northern Taiwan. There are 21,000 family caregivers (Taoyuan City Government, 2021) and 4,300 high-burden families in Taoyuan city (Ministry of Health and Welfare, 2023). We surveyed two different populations: high-burden family caregivers and non-high-burden caregivers. G-power 3.1.9.6 was used to calculate the sample size required, a linear multiple regression: Fixed model, R2 deviation from 0 with 19 predictors requires a sample size of 87 participants in each group for a total of 174 participants to achieve an 80% statistical power at 5% significance level. The inclusion criteria for participants were (1) family caregivers aged 20 years and above; (2) the care recipient received long-term care services from the government; and (3) willingness to participate in the study after signing a consent form. Exclusion criteria included (1) caregivers who were unable to communicate.
Ten indicators were developed by the Ministry of Health and Welfare (2021) for screening high-burden family caregivers in Taiwan. They are (1) family caregivers who had suicidal attempts or thoughts; (2) those who had experienced domestic violence; (3) those who did not have a substitute caretaker; (4) those who were taking care of two or more people; (5) those who were also a patient; (6) those who were taking care of a patient with dementia; (7) those who were elderly; (8) those who applied for governmental assistance but were deemed ineligible; (9) those who experienced changes to the patient’s care conditions; (10) those who did not have experience with caretaking. Participants who meet any of the following indicators are considered high-burden family caregivers: (A) (1) or (2) plus any one of (3) to (10); (B) Any three items from (3) to (10). This study adopted this criterion to classify high-burden family caregivers.
Instruments
The Zarit Burden Interview
The Chinese version of the Zarit Burden Interview (CZBI) (Ko et al., 2008) was used to evaluate the burden level of family caregivers. This questionnaire was adapted from Zarit et al. (1985) and contained 22 items. The total score ranged from 0 to 88 points. The internal consistency reliability of the scale demonstrated a Cronbach’s α of .89 (Ko et al., 2008). Higher scores signified a greater caregiving burden. Scoring less than 21 points, 21 to 40 points, 41 to 60 points, and 61 to 88 points indicated no or minor, mild, moderate, and severe burden, respectively (Ko et al., 2008).
Revised Scale for Caregiving Self-Efficacy
The Chinese version of the Revised Scale for Caregiving Self-Efficacy (RSCSE) was used to evaluate family caregiver’s self-efficacy. The Scale for Caregiver Self-Efficacy was revised by Steffen et al. (2002) using the scale from Zeiss et al. (1999), which included three subscales: (1) Self-Efficacy for Obtaining Respite (SE-OR); (2) Self-Efficacy for Responding to Disturbing Behaviors (SE-DB); (3) Self-Efficacy for Controlling Upsetting Thoughts about Caregiving (SE-CT). Each subscale was composed of five items, a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree). A higher score represented a higher self-efficacy. The scale had a Cronbach’s α of .85 (SE-OR), 0.82 (SE-DB), and .85 (SE-CT) (Steffen et al., 2002).
The World Health Organization Quality of Life Scale
The Taiwanese brief version of the World Health Organization Quality of Life Scale (WHOQOL-BREF) was used to evaluate the quality of life in family caregivers and comprised 6 domains and 28 items. The domains included overall quality of life, overall health, physical health, psychological, social relationships, and environment. The scale’s internal consistency showed a high value, with Cronbach’s α at .95 (Sie et al., 2023).
The scoring system of this questionnaire took the mean score of all items in each of the physical health, psychological, social relationships, and environment domains and multiplied it by 4, resulting in a score for that domain. The score ranged from 4 to 20 points. A higher score indicated a better quality of life (The Whoqol-Taiwan Group, 2000).
Case-Mix System
The long-term care support in Taiwan was categorized using the case-mix system (CMS). CMS is the basis for resource allocation of long-term care services. The classification was based on the care recipients’ scores and levels of challenges in the Activities of Daily Living scale (ADLs), instrumental activity of daily living (IADL), intellectual disability, special care, emotional problems, and behavior. The categories were established as seven levels: levels 2 to 8. A higher level implied a greater need for long-term care services (Ministry of Health and Welfare, 2022). Cases using long-term care services will be evaluated once a year (except for those who have been evaluated as long-term care needs in level 8 for two consecutive times, the re-evaluation period is adjusted to 24 months). In this study, we categorized the levels into mild (levels 2 and 3), moderate (levels 4–6), and severe (levels 7 and 8).
Activities of Daily Living Scale
Mahoney and Barthel (1965) developed the ADLs adopted in this study. This scale described the basic skills and activity abilities required for independent self-care (Edemekong et al., 2019). The ADLs assessed 10 categories: feeding, bathing, grooming, dressing, bowel and bladder continence, toileting, transferring, ambulating, and taking the stairs. The total score was 100; the higher the score, the better the ability to function. It was classified into five levels: 0 to 20 points indicating total dependence, 21 to 60 points indicating requiring extensive assistance, 61 to 90 points indicating requiring limited assistance, 91 to 99 indicating requiring supervision, and 100 indicating independence. The original scale had Cronbach’s α of .95 (Hsueh et al., 2001).
Disease Types
According to the care management assessment scale on the service management platform (Ministry of Health and Welfare, 2022), disease types included 22 categories. For statistical analysis, we categorized the disease types into no, physical, psychological, and physical and psychological diseases.
Data Collection
Eight research assistants were involved in data collection. First, to ensure the accuracy of the data collection process, the first author trained research assistants before recruiting participants. Subsequently, the first author and research assistants recruited the participants together to ensure that the research assistants were familiar with the process before conducting the process independently. We encouraged the participants to fill out the questionnaires by themselves. If the participants could not complete the questionnaires themselves, the questionnaires were collected through interviews by research assistants.
Data Analysis
Data were analyzed using the SPSS 23.0. Descriptive statistics, independent t-test, ANOVA, Pearson’s correlation, and multiple regression were carried out for data analysis.
Ethical Considerations
This study was reviewed and approved by the research ethics committee of the Landseed International Hospital, Taiwan (Reference No. 22-018-B1). We obtained verbal and written consent from family caregivers before collecting data. All participants were told that they could withdraw from the study anytime for any reason.
Results
Characteristics of Family Caregivers
The mean age of family caregivers was 55.89 years old and 30.1% of family caregivers were older adults. Female caregivers accounted for the majority, which was 133 (76.4%). Comparing the differences between the characteristics of high-burden family caregivers and non-high-burden caregivers, gender, employment status, participation in support groups, and recipients of service centers of family caregivers showed statistically significant differences (p < .05), as shown in Table 1.
Table 1.
Characteristics of Family Caregivers (N = 174).
| Variables | All (N = 174) | High-burden FCG (n = 87) | Non-high-burden FCG (n = 87) | t/x2 | p |
|---|---|---|---|---|---|
| M ± SD/n (%) | M ± SD/n (%) | M ± SD/n (%) | |||
| Age | 55.89 ± 13.50 | 56.86 ± 13.66 | 54.92 ± 13.34 | 0.949 | .344 |
| ≤64 | 121 (69.6) | 60 (69.8) | 61 (70.3) | ||
| ≥65 | 52 (30.1) | 26 (30.2) | 25 (29.7) | ||
| Gender | 14.072 | <.001*** | |||
| Male | 41 (23.6) | 10 (11.5) | 31 (35.6) | ||
| Female | 133 (76.4) | 77 (88.5) | 56 (64.4) | ||
| Educational level | 0.105 | .746 | |||
| Junior High school or below | 56 (32.2) | 27 (31.0) | 29 (33.3) | ||
| Senior High school or above | 118 (67.8) | 60 (69.0) | 58 (66.7) | ||
| Marital status | 1.800 | .407 | |||
| Single | 24 (13.8) | 15 (17.2) | 9 (10.3) | ||
| Married | 120 (69.0) | 57 (65.5) | 63 (72.4) | ||
| Widowed or divorced | 30 (17.2) | 15 (17.2) | 15 (17.2) | ||
| Employment | 6.459 | .040* | |||
| Full-time | 55 (31.6) | 20 (23.0) | 35 (40.2) | ||
| Part-time | 24 (13.8) | 12 (13.8) | 12 (13.8) | ||
| Unemployed | 95 (54.6) | 55 (63.2) | 40 (46.0) | ||
| Relationship to care recipient | 2.991 | .393 | |||
| Spouse | 46 (26.4) | 28 (32.2) | 18 (20.7) | ||
| Children | 77 (44.3) | 36 (41.4) | 41 (47.1) | ||
| Daughter-in-law | 22 (12.6) | 10 (11.5) | 12 (13.8) | ||
| Others | 29 (16.7) | 13 (14.9) | 16 (18.4) | ||
| Participation in support groups | 59 (33.9) | 49 (56.3) | 10 (11.5) | 39.006 | <.001*** |
| Receive caring from SCFCG | 59 (33.9) | 59 (67.8) | 0 |
Note. FCG = family caregivers; SCFCG = service centers of family caregivers.
p < .05, ***p < .001.
Characteristics of Care Recipients
Characteristics of care recipients demonstrated that households with a stable income accounted for the majority of 127 participants (73.0%). Sixty-four care recipients (36.8%) had a severe degree of disability (CMS levels 7 and 8), 99 (56.9%) had a physical disease, and 64 (36.8%) required extensive assistance, accounting for the majority. Compared to non-high-burden caregivers, high-burden caregivers showed significant differences in care recipients’ disease types (p < .05), as shown in Table 2.
Table 2.
Characteristics of Care Recipients (N = 174).
| Variables | All (N = 174) | High-burden FCG (n = 87) | Non-high-burden FCG (n = 87) | ||
|---|---|---|---|---|---|
| M ± SD/n (%) | M ± SD/n (%) | M ± SD/n (%) | t/x2 | p | |
| Category of long-term care benefits | 5.589 | .061 | |||
| Low income | 31 (17.8) | 19 (21.8) | 12 (13.8) | ||
| Middle to low-income | 16 (9.2) | 4 (4.6) | 12 (13.8) | ||
| Stable-income | 127 (73.0) | 64 (73.6) | 63 (72.4) | ||
| Case-mix system (CMS) | 3.029 | .220 | |||
| Mild (Grades 2–3) | 33 (19.0) | 12 (13.8) | 21 (24.1) | ||
| Moderate (Grades 4–6) | 77 (44.3) | 41 (47.1) | 36 (41.4) | ||
| Severe (Grades 7 and 8) | 64 (36.8) | 34 (39.1) | 30 (34.5) | ||
| Types of disease | 10.175 | .017* | |||
| No disease | 3 (1.7) | 2 (2.3) | 1 (1.1) | ||
| Psychological disease | 13 (7.5) | 6 (6.9) | 7 (8.0) | ||
| Physical disease | 99 (56.9) | 40 (46.0) | 59 (67.8) | ||
| Physical and psychological diseases | 59 (33.9) | 39 (44.8) | 20 (23.0) | ||
| ADLs | 42.01 ± 31.28 | 38.22 ± 30.21 | 45.80 ± 32.04 | −1.607 | .110 |
| Total dependence | 62 (35.6) | 33 (37.9) | 29 (33.3) | 3.203 | .524 |
| Extensive assistance | 64 (36.8) | 35 (40.2) | 29 (33.3) | ||
| Limited assistance | 34 (19.5) | 13 (14.9) | 21 (24.1) | ||
| Supervision | 8 (4.6) | 3 (3.4) | 5 (5.7) | ||
| Independence | 6 (3.4) | 3 (3.4) | 3 (3.4) |
Note. FCG = family caregivers.
p < .05.
Comparison of the Caregiver Burden, Self-Efficacy, and Quality of Life Between High-Burden Caregivers and Non-High-Burden Caregivers
An independent t-test analysis revealed that the average caregiver burden score in the high-burden FCG was higher than the non-high-burden FCG, showing a statistical significance in Table 3 (p < .001). An ANOVA analysis found that among all disease types, the average caregiver burden score in the group of physical and psychological diseases was higher than others. However, the difference was not significant between high-burden FCG and non-high-burden FCG (p = .415, p = .191), as shown in Table 3.
Table 3.
Comparisons of Caregiver Burden in Different Types of Disease Between Two Groups (N = 174).
| Types of disease | High-burden FCG (n = 87) | Non-high-burden FCG (n = 87) | ||||
|---|---|---|---|---|---|---|
| n | M ± SD | n | M ± SD | t | p | |
| No | 2 | 27.00 ± 5.66 | 1 | 37.00 ± 0.00 | −1.443 | .386 |
| Psychological | 6 | 47.00 ± 22.63 | 7 | 34.14 ± 18.58 | 1.125 | .284 |
| Physical | 40 | 51.78 ± 16.80 | 59 | 32.61 ± 13.88 | 6.188 | <.001*** |
| Physical and psychological | 39 | 53.44 ± 17.41 | 20 | 39.10 ± 16.33 | 3.056 | .003** |
| All | 51.62 ± 17.59 | 34.28 ± 14.84 | 7.030 | <.001*** | ||
| F | 0.962 | 1.618 | ||||
| p | 0.415 | .191 | ||||
p < .05, ***p < .001.
Using an independent t-test and comparing high-burden caregivers to non-high-burden caregivers, it showed that high-burden caregivers’ self-efficacy and quality of life in the physical health, psychological, social relationship, and environment domains were significantly lower than those of non-high-burden caregivers (p < .05, p < .001), as shown in Table 4. High-burden caregivers scored lowest in the SE-CT and the psychological domain in quality of life, indicating that it is an important issue in high-burden caregivers’ psychological needs.
Table 4.
Comparisons of Self-Efficacy and Quality of Life Between Two Groups (N = 174).
| Variables | Rang | All (N=174) | High burden FCG (n = 87) | Non-high-burden FCG (n = 87) | ||
|---|---|---|---|---|---|---|
| M ± SD | M ± SD | M ± SD | t | p | ||
| Self-efficacy | ||||||
| SE-OR | 5–25 | 13.79 ± 5.58 | 12.43 ± 5.85 | 15.15 ± 4.97 | −3.310 | .001** |
| SE-DB | 5–25 | 15.24 ± 5.07 | 14.30 ± 5.46 | 16.18 ± 4.50 | −2.487 | .014* |
| SE-CT | 5–25 | 13.66 ± 4.48 | 12.06 ± 5.08 | 15.25 ± 4.03 | −4.598 | <.001*** |
| Quality of life | ||||||
| Overall quality of life | 1–5 | 2.83 ± 0.90 | 2.57 ± 1.03 | 3.08 ± 0.65 | −3.871 | <.001*** |
| General health | 1–5 | 2.71 ± 0.91 | 2.41 ± 0.94 | 3.00 ± 0.78 | −4.498 | <.001*** |
| Physical health | 4–20 | 12.40 ± 2.94 | 11.32 ± 2.90 | 13.48 ± 2.58 | −5.212 | <.001*** |
| Psychological | 4–20 | 11.63 ± 3.10 | 10.36 ± 2.98 | 12.90 ± 2.67 | −5.911 | <.001*** |
| Social relationship | 4–20 | 12.51 ± 2.95 | 11.57 ± 3.09 | 13.45 ± 2.48 | −4.409 | <.001*** |
| Environment health | 4–20 | 12.62 ± 2.83 | 11.86 ± 2.97 | 13.39 ± 2.47 | −3.704 | <.001*** |
Note. FCG = family caregivers.
p < .05, **p < .01, ***p < .001.
Correlations Between Burden, Self-Efficacy, and Quality of Life in High-Burden Caregivers
Analyzing the correlation between family caregivers’ age, caregiver burden, self-efficacy, and quality of life using Pearson correlation showed that the correlations between caregiver burden and the physical health, psychological, social relationship, and environment domains of quality of life were moderately negatively correlated (r = −.65 to −.48, p < .001) and that those between self-efficacy and the physical health, psychological, social relationship, and environment domains of quality of life were moderately positively correlated (r = .36–.55, p < .001; Table 5).
Table 5.
Correlation Analysis of Family Caregivers’ Care Burden, Self-Efficacy, and Quality of Life (N = 174).
| Variables | Age | Burden | SE-OR | SE-DB | SE-CT | Physical health | Psychological | Social | Environment |
|---|---|---|---|---|---|---|---|---|---|
| Age | 1.00 | ||||||||
| Burden | −0.02 | 1.00 | |||||||
| SE-OR | 0.09 | −0.48*** | 1.00 | ||||||
| SE-DB | 0.14 | −0.53*** | 0.42*** | 1.00 | |||||
| SE-CT | 0.14 | −0.57*** | 0.45*** | 0.58*** | 1.00 | ||||
| Physical health | −0.13 | −0.63*** | 0.55*** | 0.36*** | 0.52*** | 1.00 | |||
| Psychological | −0.04 | −0.65*** | 0.46*** | 0.48*** | 0.52*** | 0.79*** | 1.00 | ||
| Social | 0.03 | −0.48*** | 0.42*** | 0.42*** | 0.39*** | 0.66*** | 0.68*** | 1.00 | |
| Environment | 0.07 | −0.56*** | 0.47*** | 0.45*** | 0.52*** | 0.76*** | 0.77*** | 0.74*** | 1.00 |
p < .001
Multiple Regression Analysis of Factors Associated With Quality of Life in Family Caregivers
In this study, three subscales of self-efficacy (SE-OR, SE-DB, and SE-CT) and high-burden family caregiver were independent variables, and four domains (physical health, psychology, social relations, and environment) of quality of life were outcome variables. The analysis revealed no collinearity among the variables, as indicated by variation inflation factor (VIF) values ranging from 1.14 to 1.74. Table 6 shows the associations between each variable and four domains (physical health, psychology, social relations, and environment) of quality of life. Self-efficacy and high burden explained 29 to 43% of the variance in different domains in quality of life among family caregivers (Table 6).
Table 6.
Multiple Regression Analysis of Factors Associated with Quality of Life in Family Caregivers (N = 174).
| Variables | Physical health | Psychological | Social | Environment | ||||
|---|---|---|---|---|---|---|---|---|
| β | p | β | p | β | p | β | p | |
| Constant | 7.79 | <.001*** | 6.85 | <.001*** | 8.57 | <.001*** | 7.41 | <.001*** |
| SE-OR | .20 | <.001*** | .11 | .003** | .13 | .002** | .13 | <.001*** |
| SE-DB | −.01 | .844 | .14 | .003** | .14 | .005** | .09 | .040* |
| SE-CT | .18 | <.001*** | .14 | .006** | .05 | .316 | .17 | <.001*** |
| High-burden FCG (reference group: Non-high-burden FCG) | −1.05 | .004** | −1.53 | <.001*** | −1.11 | .007** | −.47 | .202 |
| R 2 | .43 | .42 | .29 | .37 | ||||
| Adjusted R2 | .42 | .40 | .27 | .35 | ||||
| F | 31.684 | 30.135 | 17.283 | 24.632 | ||||
| p | <.001*** | <.001*** | <.001*** | <.001*** | ||||
p < .05, **p < .01, ***p < .001.
Discussion
The majority of family caregivers in this study were unemployed, middle-aged, women, children-to-care recipients, and possessing senior high school. These characteristics are consistent with previous research (Ministry of Health, 2017; Swartz & Collins, 2019). Specifically, 77 (88.5%) of the high-burden family caregivers in this study were women, corroborating previous research showing that female caregivers often shoulder a more significant caregiving burden (Zwar et al., 2023). It also highlights that women are the primary workforce responsible for long-term caregiving at home. It is therefore recommended that relevant agencies focus on enhancing support tailored specifically to female family caregivers. The majority of family caregivers were care recipient’s children or daughter-in-law. This is consistent with the traditional culture of filial piety, which prompts children to engage in family care in Taiwan (W. P. Wang et al., 2021). In addition, 30.1% of family caregivers were older adults in this study. It revealed that older adults play the role of caregiver, an issue that needs attention and more research is needed.
The result shows that 66.1% of family caregivers had never participated in family support groups, and 32.2% family caregivers with high burden were not receiving services from Family Caregiver Support Centers. This observation is consistent with previous research highlighting low participation rates among family caregivers in support groups (C. F. Chen & Fang, 2022). The challenge for family caregivers is that it is difficult to have free time to participate in activities. It is therefore recommended that relevant agencies employ diverse strategies to encourage family caregiver participation in activities. Potential strategies include establishing caregiver support services, such as arranging caregiver substitutes and providing respite services; collaborating with other long-term care groups to establish a local cooperative resource network, which could involve organizing family support activities within Day Care Centers and encouraging caregivers to participate alongside care recipients; and offering activities in smaller areas, such as villages, to reduce transportation time for family caregivers in remote areas and enhance their willingness to participate in these activities.
Among high-burden family caregivers, 39 (44.8%) cared for recipients with both physical and psychological diseases; among general family caregivers, only 20 (23.0%) provided such care. It revealed that as the conditions of care recipients become more complex, caregivers become more likely to experience higher levels of burden. This finding aligns with previous research indicating that caregiver burden tends to increase with the deteriorating physical condition and the number of chronic diseases of the care recipient (Leung et al., 2020). It is thus essential for relatives, friends, and family caregivers to remain vigilant when the physical and mental conditions of the care recipient worsen. If the burden on the caregiver escalates, engaging in discussions with family members and professionals is advisable to explore potential solutions, which may involve locating substitute caregivers or adjusting the caregiving approach.
The caregiver burden experienced by family caregivers in this study was assessed as moderate. This finding aligns with the research results by Rosas and Neri (2019) concerning family caregivers who care for older adults. However, Y. F. Cheng et al. (2019) reported a moderate to severe burden for caregivers of two older adults with intellectual disabilities. This difference can be attributed to the higher attention and care needs of individuals with behavioral and mental health issues, which results in a more significant caregiver burden for family caregivers. Notably, this study revealed that the average caregiver burden for high-burden family caregivers (51.62 ± 17.59) was higher than that of non-high-burden family caregivers (34.28 ± 14.84). It indicates that high-burden family caregivers were aware of and understood their burden. Previous studies have shown that respite services can effectively reduce the burden and anxiety of caregivers while enhancing their overall quality of life (S. Y. Cheng et al., 2022; Tien et al., 2019). It is suggested that high-burden family caregivers can use respite services effectively to reduce burden.
Compare the caregiver burden in different types of disease, the result showed that the caregiver burden was not significantly different in all disease types both in high-burden and non-high-burden family caregivers (F = 0.962, F = 0.415, Table 3). It revealed that the caregiver burden may depend more on whether one is a high-burden caregiver in rather than the disease type of the care recipient. The findings of this study can provide a reference for future policies to help family caregivers. Due to the smaller sample size in the groups of psychological diseases (n = 13) and no disease (n = 3). It is recommended that future research conduct comparative studies on family caregiver burden with varying types of disease in a larger sample.
In this study, high-burden family caregivers exhibited moderate to above-average levels of self-efficacy. Notably, their SE-DB scores were the highest, followed by SE-OR and SE-CT scores. This result of self-efficacy differs from the findings of Tan et al. (2021), who reported that caregivers for those with dementia had higher SE-CT scores and lower SE-OR scores. This discrepancy may be because the participants of this study primarily cared for individuals with physical diseases. High-burden family caregivers exhibited above-average confidence when dealing with physical diseases that require regular monitoring, likely a result of their prior caregiving experience. However, when faced with prolonged caregiving responsibilities, their confidence in managing negative thoughts diminished. It is therefore recommended that providing mental support is considered when designing intervention resources. Caregivers’ self-efficacy can enhance their ability to manage negative emotions, and encouraging self-efficacy through effective intervention measures can instill caregivers with a more positive and resilient outlook on life (Ritter et al., 2022). Individuals with high self-efficacy tend to invest more effort into problem-solving and achieving their goals when faced with challenging tasks (S. C. Wang et al., 2020); this approach has also been shown to effectively reduce stress (Y. J. Chen, 2020). Given these findings, organizing activities aimed to enhance caregivers’ self-efficacy is advisable; such initiatives can empower family caregivers with the confidence to manage their caregiving responsibilities effectively.
The result showed that high-burden family caregivers experienced a lower quality of life across all domains than non-high-burden family caregivers. Among these high-burden caregivers, 59 (67.8%) had received services offered by Service Centers for Family Caregivers, although their quality of life remained lower than that of general home caregivers. This finding is consistent with previous research showing a correlation between a family caregiver with a higher burden and a lower quality of life (Rosas & Neri, 2019). Notably, the caregivers in this study exhibited the lowest scores in the psychological domain. This observation aligns with the findings of T. H. Chen and Liu (2022), which emphasize the impact of inadequate and insufficient support on family caregivers’ quality of life. Psychological support for family caregivers is thus essential, and it is recommended that encouraging family caregivers to engage in activities can provide them a respite from the high-pressure caregiving environment and create opportunities for them to connect with peers facing similar challenges via support groups. These interactions allow family caregivers to openly discuss caregiving difficulties, learn from experienced family caregivers, and acquire additional caregiving skills or emotional stress relief techniques. These interactions can also provide emotional support that improves quality of life. It is recommended that government agencies organize activities that can cooperate with daycare centers and long-term care institutions to facilitate family caregivers who cannot leave care recipients. This collaboration can involve organizing activities that enable family caregivers to participate while still being able to oversee care recipients. Additionally, video conferences or webpages can allow family caregivers to access emotional support from the comfort of their homes.
In this study, a positive correlation was observed between the quality of life of family caregivers and their self-efficacy. In contrast, a negative correlation was found between their quality of life and the caregiving burden they experienced. Family caregivers’ self-efficacy and being a high-burden family caregiver emerged as correlation factors across the four major domains of quality of life. These findings align with prior research results (Jia et al., 2021; Rosas & Neri, 2019). Furthermore, a previous study has highlighted the significance of resilience in assisting caregivers to adapt effectively to their roles (Lin & Lin, 2019). Resilience is a coping strategy that empowers individuals to recover when confronted with challenges proactively, and it can be nurtured through training and environmental modifications (Lopez et al., 2018). Lin and Lin (2019) emphasized that while heavy caregiving burdens can hinder caregivers’ personal and familial development, cultivating self-efficacy and resilience can empower them to overcome crises from a positive psychology perspective. It implies that family caregivers have the potential to enhance their resilience by observing the behaviors of others, reflecting on their own past experiences, and engaging in personal introspection. By doing so, they can foster resilience and ultimately improve their quality of life. Therefore, professionals seeking to enhance family caregivers’ quality of life can focus on reducing caregiving burdens and cultivating self-efficacy. Additionally, caregivers can be encouraged to participate in caregiving planning, sharing their successful experiences in seminars, providing mutual support among peers, and inviting experienced caregivers to share their past caregiving experiences. Such activities can help caregivers build confidence in their caregiving roles, enhance their resilience, and improve their quality of life.
Limitations
This study was conducted in a single area of Taiwan, and the care recipients require long-term care, making it challenging to generalize the findings to other regions or family caregivers of patients with acute diseases. Future research should consider expanding data collection to encompass multiple regions and increasing the number of participants to improve generalizability. This study is also limited in that the psychological caregiving process of family caregivers is solely portrayed through questionnaire-based data. It is recommended that future research can employ qualitative interviews to gain a more comprehensive understanding of the caregiving journey. This approach could offer insights into the caregiving experiences of various family caregivers, ranging from novice caregivers to those with extensive experience.
Conclusion
The findings of this study revealed that the quality of life in high-burden caregivers was lower than in general family caregivers. It was observed that an increase in the caregiving burden of family caregivers or a decrease in their self-efficacy reduced their quality of life. Notably, the self-efficacy of family caregivers and being a high-burden family caregiver were identified as associated factors linked to quality of life. In light of these findings, it is recommended that relevant agencies take measures to enhance the quality of life for family caregivers, which can involve alleviating their caregiving burden and boosting their self-efficacy.
Acknowledgments
The authors express special thanks to all participants who shared their valuable experiences in this study.
Footnotes
ORCID iD: Yi-Ya Chang 
https://orcid.org/0000-0003-1098-3373
Ethical Considerations: This study was reviewed and approved by the Research Ethics Committee (Reference No. 22-018-B1) at Landseed International Hospital, Taiwan.
Author Contributions: Chia-Yuan Lin: Conceptualization, methodology, data analysis, project administration, and writing – original draft, revised draft, review, and editing. Shu-Hung Chang: Data analysis, and original draft writing. Chih-Ming Lin: revised draft, review, and editing. Yi-Ya Chang: Methodology, data analysis, and writing – original draft, revised draft, review, and editing.
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The author(s) received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. The publication of this article was supported by Chang Gung University of Science and Technology.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
HIPAA: The privacy of all participants in this study is guaranteed to be protected and meets HIPAA requirements.
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