Preparedness among Family Caregivers of Patients with Non- Communicable Diseases in Indonesia

Background: Family caregivers spend 24 hours a day looking after and assisting patients. However, they are not always adequately prepared for all the problems they face. There is a lack of evidence exploring caregivers’ preparedness among family caregivers of patients with non-communicable diseases in Indonesia. Purpose: This study aimed to identify caregivers’ preparedness among family caregivers of patients with non-communicable diseases. Methods: This cross-sectional study was conducted on 120 Indonesian family caregivers for patients with non-communicable diseases, who were selected using a purposive sampling technique. Data were collected using the Indonesian version of the Preparedness for Caregiving Scale (PCS) which had been validated before its use. The possible scores of this tool ranged from 0.00 to 4.00. The higher the score, the more prepared the family caregivers were. Data were analyzed using one way ANOVA. Results: Family caregivers reported the feeling of moderately prepared for caregiving. The score of family caregivers’ preparedness for patients with diabetes, cancer, and chronic kidney disease were 2.97±0.42, 2.83±0.40, and 2.89±0.49, respectively with a possible range from 0.00 to 4.00. There were no differences in the preparedness among family caregivers of patients with non-communicable diseases (p=0.387). Conclusion: Caregivers’ preparedness is an essential element of patient care. Nurses have to be proactive in assessing each family caregiver’s preparedness to enhance the quality of life of both the family caregivers and the patients themselves so that they can be empowered as a source of nursing care.

The family caregiver is an individual who looks after patients as an extension of the health care provider, and who provides care related to the functional status of family members suffering from an illness (Given, Given, & Sherwood, 2012). They can be the spouse, parents, daughters or sons, or other relatives (Effendy et al., 2014). The studies conducted in East Java (Werdani & Silab, 2020), and Yogyakarta and Central Java (Sari, Warsini, & Effendy, 2018), Indonesia, showed that the patients have their nuclear family as their support system. Taking care of NCD patients has been transformed from curing the disease to offering comfort and a better quality of life. This situation is a challenge for family caregivers who take responsibility for caring for patients who suffer from NCDs (Rha, Park, Song, Lee, & Lee, 2015;Wolff & Jacobs, 2015). The challenge is that family caregivers spend 24 hours a day helping and assisting patients with their physical and psychological conditions, as well as financial and autonomous problems (Effendy et al., 2014;Machado, Dahdah, & Kebbe, 2018). The study conducted by Sari et al. (2018) on 178 family caregivers of advanced cancer patients in Yogyakarta and Central Java showed that the burden was higher for family caregivers who spent more time each day looking after their sick family members.
The complicated problems among family caregivers are usually not balanced with their preparedness (Maheshwari & Mahal, 2016). Their preparedness includes how ready the family caregivers see themselves for the tasks and roles demanded from them when looking after family members who suffer from illness, including the provision of physical care and emotional support, preparing support services at home, and compensating for the burden of responsibility (Gonzales, Polansky, Lippa, Gitlin, & Zauszniewski, 2014;Petruzzo et al., 2017). It is also about dealing with the stress of the care process (Gonzales et al., 2014). Less-prepared caregivers feel anxious about the caring process, feel burdened, stressed, and have mood swings (Carter, Lyons, Stewart, Archbold, Scobee, 2010;Grant et al., 2013;Schumacher, Stewart, & Archbold, 2007). Furthermore, they have poorer health than caregivers who are better prepared (Ahn, Hochhalter, Moudouni, Smith, & Ory, 2012). In contrast, well-prepared caregivers with appropriate skills and knowledge feel happy about the care they provide; they have better hope (Henriksson, Pearson-r values higher than 0.320, and the Cronbach's alpha coefficient value was 0.933. I-PCS consisted of eight questions with five answer choices using a Likert scale ranging from 0 (not at all prepared) to 4 (very well prepared) and one open question about the specific preparedness desirable in the caregiving process. The possible score ranged from 0.00 to 4.00. The higher the score, the more prepared the family caregivers were.

Data collection
The family caregivers for cancer and CKD who met eligibility criteria were identified through the ward manager based on the medical record. Meanwhile, the family caregivers for diabetes were identified through data from the public health centre by cadres in that area. They were fully informed about the study's aim and signed the informed consent after they were identified as potential respondents. Then, the family caregivers completed the instruments, including the socio-demographic and caregiver preparedness questionnaires. The completed forms were corrected and clarified again to the respondents before they were processed and analyzed. Four research assistants administered the data collection.

Data analysis
The Statistical Package for Social Sciences (SPSS) version 21 software package (IBM SPSS, Chicago, IL, USA) was used for data entry and analysis. Descriptive statistics were used to summarize the demographic characteristics and caregivers' preparedness. The Shapiro Wilk normality test was used to describe the normality of the numerical data. The result showed that caregivers' preparedness in each group had a normal distribution (p>0.05), so a one-way ANOVA test was used to assess the differences on caregivers' preparedness for cancer, diabetes, and CKD patients. A p-value of <0.05 was considered to be significant.

Ethical issues
The Health Research Ethics Committee, Faculty of Health, Universitas Jenderal Achmad Yani Yogyakarta, approved all the materials and protocols used in this study (Number: SKep/05/KEPK/II/2020). Family caregivers were fully informed about the aims of the study. They signed an informed consent form and were informed that they could withdraw from the study at any time. They were also assured that all collected data would be kept confidential.

Demographic characteristics of the respondents
The respondents' characteristics are shown in Table 1. There were 40 consenting family caregivers for each disease included in the final analysis. The mean age of the family caregivers for diabetes, cancer, and CKD patients was 48.26±15.13, 39.54±12.30, and 47.95±12.17 years old, respectively. The majority of family caregivers were female for diabetes and male for cancer and CKD, Moslem, and married. Most family caregivers for diabetes and CKD were spouses, and for cancer, they were parents. Most of them had a senior high school education, and a low-income level. Only 85.0% and 80% had ever received health education about diabetes and CKD, respectively, while 82.5% had no health education for cancer. The majority of the treatment experienced by diabetes patients' caregivers was in seeking medical treatment (80.0%), while it was chemotherapy for cancer caregivers (40.0%), and hemodialysis for CKD caregivers (100%). They all had good health and had been taking care of the patients for approximately a minimum of two months up to two years.  The specific desirable preparedness in the caregiving process is shown in Figure 1. From this result, it can be concluded that financial preparedness is the principal preparedness that is desirable by the family caregivers (63.0%).

The comparison of caregivers' preparedness of NCD patients
The comparison of caregivers' preparedness among family caregivers for diabetes, cancer, and CKD is shown in Table 3. There were no differences on the caregivers' preparedness among family caregivers for diabetes, cancer, and CKD (p=0.387).  (Otto et al., 2020). The previous study in Ohio family caregivers showed a lower range of preparedness for the admission phase than this current study (2.65±0.78). However, during the post-discharge phase, the score escalated and had the same range as this current study (2.97±0.72) (Mazanec et al., 2018).
In the Asian context and especially in the Indonesian culture, there is a large family structure called an extended family (Subandi, 2011) with a strong bond between each other (Subandi, 2011;Yoon, Kim, Jung, Kim, & Kim, 2014). Although NCDs require a caregiving process, it is still considered to be a "normal condition" for people in Indonesia. Looking after sick family members, such as by providing personal care, daily need, and health management (Kaye, Harrington, & LaPlante, 2010) is, in Indonesian culture, accepted as a duty that should not be questioned (Funk, Chappell, & Liu, 2011;Kristanti et al., 2017). To be a caregiver for their loved ones suffering from illness is natural. This condition makes the family caregivers feel more prepared to look after their family members, so they become more confident in doing this (Vellone et al., 2020).
This study demonstrates a contrasting result with Maheswari & Mahal (2016) for 226 family caregivers of cancer patients in India. The mean of their preparedness was at a low level (13.56±2.8) with a possible range from 9.00 to 22.00. A lack of caregivers' preparedness was also an issue for Italian family caregivers who cared for heart failure patients. Their PCS score was 2.13±0.77 (Petruzzo et al., 2018) and 2.11±0.76 (Vellone et al., 2020) with a possible range of 0.00 to 4.00. Contrary to this current study, a study of Chinese family caregivers for stroke patients demonstrated a considerably low score for their preparedness (M=4.42 of 32.00), indicating that the family caregivers were not well prepared (Liu et al., 2020). The low level of preparedness occurred due to family caregivers' inadequate training for their caregiving skills and education (Maheswari & Mahal, 2016). The significant factors that affected the low preparedness were low educational background and caregiving experience. The low educational level could affect the family caregivers' ability to communicate effectively with the health care providers. The higher the degree of education, the greater the preparedness since they had a more excellent opportunity to improve awareness and expertise and gain more accurate caregiving information (Liu et al., 2020).
Surprisingly, there were no differences on caregivers' preparedness for diabetes, cancer, and CKD patients in this current study. It means that all the family caregivers who look after family members suffering from chronic illnesses have the same moderate preparedness. The moderate level of preparedness means that the family caregivers feel prepared but, on the other hand, also need help in certain situations. This may happen because all chronic illnesses, including cancer, CKD, and diabetes, have the same problems that must be faced by a family caregiver. The problems include physical and psychological aspects (Effendy et al., 2014;Machado et al., 2018). The family caregivers must prepare for caring process, such as preparedness to provide physical care, emotional support, support services at home, and compensation for the burden of care resulting from the caring process (Petruzzo et al., 2017).
Interestingly, the cancer family caregivers had the lowest preparedness compared to the others in this study. Uncertainty about cancer is considered a significant source of psychological distress (Guan, Santacroce, Chen, & Song, 2020). Besides this, the degree of severity of the disease also influences the caregivers' preparedness (Liu et al., 2020;White, Barrientos, & Dunn, 2014). The family caregivers felt severe pressure, burdened, and anxiety about their patients' disease. They could not predict whether the healthcare team would provide help, which would have a significant impact on the caregivers' preparedness (White et al., 2014).
The additional question (item number 9 of the I-PCS) showed that the family caregivers want to be better prepared for the financial aspects of illness. The family caregivers in this study faced financial problems because they had low-income levels. Although they received some funding from National Insurance programmes (i.e., BPJS or KIS), there were still other expenses that the insurance could or would not cover. These expenses, such as for specific drugs, specific diagnostic procedures, accommodation and other needs, such as food, occur during the process of seeking treatment (Kristanti et al., 2017).
This study has limitations such as having no data about what kind of caring the family caregivers give to their loved ones. The kind of caring would be valued data for comparing the caregivers' preparedness on each disease. The data in this study were collected at one-time period, so any dynamic changes could not be evaluated. However, this study is relatively heterogeneous because it captures three problems and has a low level of missing data indicating the accurate preparedness score.

CONCLUSION
In conclusion, caregiver preparedness is an essential element of care. Caregiver's preparedness in this study was in moderate level. The healthcare team needs to screen the preparedness of family caregivers because this is a critical step as they are an excellent source for optimized quality of care. As family caregivers also play an essential role in