Social support and associated factors among family caregivers of older people in North-East Peninsular Malaysia

Study Design

This study utilized a descriptive cross-sectional design by recruiting family caregivers from two districts: Kota Bharu and Pasir Mas in Kelantan, Malaysia. Kelantan is a state located in the North-East Region of Peninsular Malaysia. These two districts in Kelantan recorded the highest proportion of older people from urban to rural localities, which served as the justification for selecting both districts. Thus, it is expected that the rise in the number of older people has also increased the demand for caregiving in these districts.

Samples/Participants

The sample size was computed using the single population proportion formula (Naing et al., 2006).

Sample size, $N=\frac{\text{Z}2P(1-P)}{d2}$

Z = Z value (1.96 for 95% confidence level)

P = proportion in population expressed as a decimal

d = 0.05

In this study, the sample size was calculated to be 138 using Z= 1.96, P = 95.2% (Bassah et al., 2018), and d = 0.05. Considering the issues of missing data, potential dropouts, and unusable questionnaires, this study aimed for a sample size of 10%, which was more than 138. Finally, the total sample size was 152. In this study, participants were selected using convenience sampling through advertisements shared on social media platforms. Altogether 231 participants answered the survey. Five inclusion criteria were as follows: 1) being a primary family caregiver for an older person aged ≥ 60, 2) being responsible for the care of older people for at least six months, 3) aged ≥18 years old, 4) living in the same household as the older people, 5) not being paid for the care provided. The exclusion criteria included: 1) unable to read, speak and understand English or Malay.

Instruments

The study instrument was self-administered by the researcher. The first section covered demographic characteristics such as age, race, gender, marital status, job, education status, number of children, health status (record and type of medical illness), caregivers’ present perceived health, household income, relationship with older people, the total of years spent in caregiving, caregiving for others, assistance from others, and caregiver training records.

Age was categorized into three-year groups (18–32 years, 33–45 years, and 45 years and above). Gender was grouped into male and female. Race was originally classified as Malay, China, Indian, and others (e.g., Malaysian Siamese). Unfortunately, no Chinese caregivers were willing to participate in this study. Marital status included single, married, divorced/separated, and widowed. The number of children was categorized into three-year groups (none, 1 – 3, and 4 and above). The occupation was grouped into six categories: full-time work, part-time work, retired, unemployed, student, and housewife. Education level was classified into primary, secondary, certificate/skill, and college/university. Underlying medical illness was assessed as yes or no.

Firstly, the caregiver’s self-rated perceived health was categorized into “very good,” “good,” “fair,” and “poor” (Aman et al., 2020). However, no participants perceived themselves as “poor” in this study. Relationship with older people was grouped as a spouse, son/daughter, son-/daughter-in-law, siblings, and others (e.g., niece and grandchildren). Household income was categorized into three-year groups: <RM1000, RM1000 - RM4999, and >RM5000. The caregiving period was divided into four categories: <1 year, 1 - 5 years, 5 - 10 years, and >10 years. Assistance from others was asked with received or did not receive assistance. Finally, caregiving for others and receiving caregiver training were assessed by yes or no, respectively. Content validity for the demographic characteristics was obtained in terms of accuracy and appropriateness for the healthcare context in Malaysia. The content validity experts consisted of two gerontology nursing lecturers and two medical-surgical nursing lecturers, and no modifications were required.

The second section examined participants’ social support. To assess the perceived social support from family, friends, and other important personalities, the Multi-dimensional Scale of Perceived Social Support (MSPSS) was utilized (Zimet et al., 1988). It has 12 items. Each item receives a 7-point rating (ranging from 1 to 7). The total scores ranged from 12 to 84, with the highest score indicating high social support. The scale’s alpha coefficient ranged from 0.85 to 0.91, indicating strong internal consistency (Zimet et al., 1988). The study utilized a validated Malay version with a Cronbach’s Alpha coefficient of 0.89, considered acceptable (Ng et al., 2010). The original developer approved the formal usage of this instrument via email before commencing the study. A high Cronbach’s Alpha coefficient of 0.95 was attained in this study. A questionnaire with Cronbach’s Alpha coefficient value of 0.70 or higher indicated that the questionnaire demonstrated satisfactory reliability (Nunnally & Bernstein, 1994).

Data Collection

Data were collected by a research assistant who was trained to conduct the study procedures so that the variability in the data collection method was minimized. The study was conducted between June to December 2021. Firstly, bulk emails were sent to the researchers through their social media contacts (WhatsApp). After that, other eligible participants also began to receive the messages. Those who wished to be involved in the study were directed to the researchers. Eligible participants have been briefed on the research objectives and given an information sheet containing the procedures and details of the study. Next, the participants were physically instructed to either circle or tick their most preferred options. Then, they were told to contact the researcher if they had any questions and to provide their own answers. The research assistant ensured that participants were not rushed, distracted, or talking with other people while filling out the questionnaire. The participants took about 15 to 20 minutes to complete the questionnaires.

Data Analysis

The caregivers and the perceived social support characteristics were reported using descriptive statistics. Frequencies and percentages were used to define the categorical data, while means and standard deviations represented the continuous variables. The normality test was achieved using a skewness and kurtosis value. For data to be considered normal, the value ranged from ‐2 to +2 of skewness and ‐7 to +7 of kurtosis (Byrne, 2010). A skewness and kurtosis value for MSPSS were 0.085 and - 0.186, respectively. Hence, this can be concluded that the data were normally distributed. The relationship between social support and demographic variables was assessed using independent t-tests and one-way analysis of variance (ANOVA) depending on the number of groups. A p-value of less than 0.05 was considered statistically significant. IBM SPSS Statistics was employed to examine all the gathered data (version 25).

Ethical Considerations

Ethical approval for this study was obtained from the International Islamic University Malaysia Research Ethics Committee (IREC) (reference number: IIUM/504/14/11/2/IREC 2021- 083) on 20 April 2021. The participants were approached with an information sheet, and informed consent was obtained before data were collected. The participants’ involvement in the study was voluntary, and their confidentiality was protected. In order to preserve participant privacy and anonymity, the researchers kept the data confidential. Therefore, identifiers like names or identity card numbers were not used in the questionnaires.

Demographic Characteristics of Participants

Table 1 summarizes the descriptive outcome of the participants and their demographic characteristics. This study involved 231 participants whose mean age was 39.2 ± 12.6 years. Most participants were females (74.0%), married (61.0%), and Malay (98.3%). The mean number of children was 2.48 ± 2.35. Over half of the participants had completed tertiary education (58%). Most of them worked full time while they provided care for older people (55.4%) with a monthly household income between RM1000 - RM4999 (49.4%). The family caregiver perceived their health as good (52%) and had no underlying medical illness (67.1%). The relationship between the caregivers and older people was parent-children, either son or daughter (61.5%). The years of caregiving ranged from 1-5 years (39.4%). Unfortunately, slightly over half of the caregivers did not receive assistance from others (53.2%), and a majority did not carry out caregiving for others (61%). Meanwhile, most did not receive any caregiver training (90.5%).

Social Support Sources among Family Caregivers

The caregivers were advised to receive social support from three main sources: family members, friends, and significant others. Table 2 shows the mean score of social support sources in detail. Resultantly, the family caregivers perceived the highest support from family and significant others (Mean = 5.44, SD = 0.969 and Mean = 5.25, SD = 1.123, respectively) but received less support from friends (Mean = 4.84, SD = 1.094). Regarding support from family, the item “I can talk about my problems with my family” recorded a mean of 5.26, which is considered low. Meanwhile, the item “My family is willing to help me make decisions” recorded the highest mean score (5.52).

As for receiving support from significant others, the item “there is a special person who I can share my joys and sorrows with” recorded the highest mean of 5.31. On the other hand, the item “I have a special person who gives me comfort” recorded the lowest mean of 5.20. Lastly, as for support from friends. The item “I have friends who I can share my joys and sorrows with” recorded the highest mean of 5.01, while the item “I can rely on my friends when things go wrong” recorded the lowest mean of 4.77.

Relationships between Social Support and Demographic Variables

There was a significant difference in social support and demographic characteristics (Table 3). The results revealed that social support was significantly different according to gender (p = 0.006). That is, males had statistically significantly higher mean social support scores compared to females. Also, the mean social support scores were statistically significantly different across study participants among the four levels of the duration of caregiving (p = 0.001). Tukey HSD post hoc test indicated a significant difference between the below 1-year caregiving group and the 1 - 5 years caregiving group (p = 0.045). Furthermore, a significant difference was observed between the below-1-year caregiving group and the over 10 years caregiving group (p = 0.000). This finding suggests that the individuals in the below 1-year caregiving and 1 - 5 years caregiving groups scored significantly lower mean social support scores than the over 10 years caregiving group.

Finally, no significant difference was identified between social support and race; marital status; occupation; level of education; underlying medical illness; current perceived health of caregiver; relationship with older people; household income; assistance from others; caregiving for others; received caregiver training; age and the number of children.

Demographic Characteristics of Participants

The current study involved a total of 231 caregivers for older people. The mean age of the participants was 39.24 years, manifesting a relatively young group of people taking care of their older people. The results showed that most of the participants were female (74%), consistent with the studies by Aman et al. (2020) and Vun et al. (2020). This is common in Malaysia, an Asian country where women are frequently responsible for caring for the young and the old while men do the earnings to support the family. The findings revealed that most of the caregivers were Malay (98.3%), which may be due to the study location, Kelantan state in Malaysia, with a high population of Malay (Department of Statistics Malaysia, 2020). Hence, it explains why Malay is the ethnicity with the highest percentage of participants.

Traditionally, in Asia, children are responsible for caring for older people. In this study, most caregivers were either the sons or daughters of older individuals (61.5%), consistent with previous local studies (Ahmad Zubaidi et al., 2020; Ghazali et al., 2015). Nevertheless, this result is expected since Malaysian children have been bred to care for their aged or sick parents. As a result, adult children are always responsible for caring for their parents. Apart from that, most of the participants were married (61%), full-time workers (55.4%), and university graduates (58%). The results showed the potential conflict when caring for older people as they had other commitments to be fulfilled.

The findings of the current study also showed that almost half (49.4%) of the participants had a monthly income between RM1000 - RM4999; just over half (52%) perceived their health as good; approximately two-thirds (67.1%) had no underlying medical illness; just over a third (39.4%) spent caregiving from 1-5 years; over a half (53.2%) did not receive any assistance; almost two-thirds (61%) did not do any caregiving for others, and a significant majority (90.5%) did not receive any caregiver training. These reports are similar to prior research on caregivers of older persons in Malaysia, reporting that the majority of caregivers receive a monthly income of RM 1000 to RM 4999 (Ahmad Zubaidi et al., 2020). The latter study also revealed that most caregivers were unqualified to care for older people, while one-third had no chronic medical condition (Ahmad Zubaidi et al., 2020). The majority of 166 caregivers had good health and had been providing care to older people for more than two years; however, most of them had assistance in caregiving (Ghazali et al., 2015), and the majority of the 128 caregivers did not receive any caregiver training (Tan et al., 2020).

Social Support Sources among Family Caregivers

Caregivers received maximum support from family and significant others but perceived less support from friends. This result is supported by several studies in which caregivers received less social support from friends and other social network members (Akosile et al., 2018; Haya et al., 2019; Yu et al., 2013). Similar to this study’s results, the caregivers reported that they perceived the support was mainly from family members. This is much expected, as most caregivers in Malaysia were children of older people. The studies mentioned above depicted that caregivers are expected to care for their parents, regardless of their income or any associated factors that may affect this caregiving responsibility. Contrasted to the western country, a lack of nursing homes in the respondents’ areas creates a heavier burden for family caregivers.

Moreover, it is an abomination in Malaysia to send the elderly to nursing homes (Jantan & Hussin, 2015). As a result, caregivers are obliged to fully provide their parents with the support they require. According to the data on the caregivers’ characteristics, the caregivers in this study have had 1 – 5 years of experience in caregiving for older people. This experience has exposed the caregivers to a variety of stressors on a daily basis, training them to be responsive and provide the best response. Furthermore, the caregivers’ success in providing care and support for 1 – 5 years has fueled their desire to continue providing their older people with the best support to achieve the best health and quality of care.

Furthermore, many people hold a cultural belief in the concept of filial piety, whereby children are expected to respond to the needs of their family by sacrificing their own interests physically, financially, and socially for the benefit of their parents (Kristanti et al., 2021). In many Asian countries, including Malaysia, children must take care of their parents, especially those suffering from chronic medical illnesses. Regarding filial piety and gaps in caregiving, Makhtar and Samsudin (2020) explored the association between loneliness and filial piety expectations among older people in Kuantan, Pahang. The study’s results showed that older people typically have very high expectations for their children’s filial piety. This can be interpreted that the older people in this study believed and expected that they should be well taken care of by their children and other family members. Filial piety is the behavior of respecting and affection to parents, carrying out responsibilities, supporting the family, paying debts, and making other sacrifices.

Besides the concept of filial piety, the majority of the participants were Malays, who are Muslims. Therefore, accepting their role as caregivers and the challenges that come with it is consistent with the Islamic philosophy of faith in predestination (Qada Wa Qadar) (Abu Bakar et al., 2014). It urges Muslims to be content and happy even in the face of hardship and adversity. According to this teaching, Allah has predestined each person’s lifespan and happiness or unhappiness (Abu Bakar et al., 2014). Therefore, believers must accept the decision of their God.

Relationships between Social Support and Demographic Variables

A significant difference was detected between social support and two demographic variables: years of caregiving and years. According to the literature, male caregivers are less likely than female caregivers to accept help from friends, family, or community organizations. However, the results indicated that males received more social support than females from family and friends because of the broad diversity of the male caregivers’ networks. A possible explanation is that women work outdoors less often and are more likely to stay at home, which should not result in a “higher number of good friends.” Another possibility is that, in Asian society, women are typically regarded as natural caretakers born with caring traits and raised or nurtured to be caring, compared to men. Men, therefore, appear to find it easier to seek assistance from those in their close social circles, whether they be co-workers, friends, or neighbors. Additionally, they see this support as legitimate because they fill an unprepared role (Rodríguez-Madrid et al., 2019).

There was a significant difference in caregivers’ years of caregiving on the social support scores, as caregivers whose caregiving of more than 10 years received higher social support than others whose caregiving was less than 1 year and between 1 - 5 years. This indicates that the caregivers received a higher amount of social support with a longer duration of caregiving. Indeed, most caregivers have become used to the caregiving duties incorporated into their daily activities. In addition, the caregivers received more social support from family and friends because of the broad diversity of the caregivers’ networks.

Most caregivers in this study were daughters or sons of older people. As mentioned earlier, all cultures in the Malaysian population still adhere strictly to filial obligations and the societal norm that families should be given the duty of caring for older people who are in need of assistance (Aman et al., 2020). In contrast, no significant relationship was observed between social support and the gender of caregivers for older people.

Additionally, the educational level of caregivers was not associated with social support in this study, contradicting the result from a cross-sectional study conducted in Bangalore (Thirumoorthy et al., 2016). This result is thought to be related to the fact that the majority of caregivers in this study graduated from college or university. Therefore, caregivers with higher education levels are likely to have been more active in participating in caregiving activities. In addition, they are more willing to learn new and appropriate caregiving knowledge and gain information about elderly care services. Thus, they were more aware of the available resources and knew how to use these resources to support their caregiving role.

In addition, this study found no significant difference between social support and race, marital status, occupation, underlying medical illness, current perceived health of the caregiver, household income, assistance from others, caregiving for others, received caregiver training, age, and the number of children. This could be because the current study’s sample size is smaller than that of other research. Additionally, the homogeneity of the study participants’ backgrounds, including their marital status, occupation, and race, may have contributed to the study’s insignificant findings.

Implications for Nursing Practice

Family caregivers are often the primary caregivers for older adults, and they endure a huge responsibility. These caregivers have encountered challenges when performing various caregiving chores (Giovannetti et al., 2012). Adequate and sufficient support must be offered to older adults as well as to the people who care for them. Although the findings in this study indicated caregivers rated that they had received high support from family, this support may not fully help the caregivers deal with some crises in the caregiving of older people. Nurses are advised to assess the family’s community-based resources to provide a social network that may help alleviate the caregivers’ burden and challenges.

The current study also explains the association of perceived social support with gender and duration of caregiving. With this information, nurses should be able to recognize potential risk factors for caregivers who do not receive adequate social support. Additionally, it will help in deciding when intervention might be required. Such an intervention should specifically focus on addressing caregiver stress, burden, and a lack of knowledge and skills in providing care for older persons. Thus, nurses must be aware of the significance of social support as a strategy and care plan that may be used to enhance the quality of life and reduce the burden on the caregiver.

Limitations and Recommendations for Future Studies

This study has some key limitations that might have affected the results. First, overall, the present findings are insufficient to make any causal inference since the study employed a cross-sectional design. Second, the COVID-19 outbreak may have influenced the result as changes in participants’ behaviors and lifestyles. Third, the sample size in this study might have a bias in the data collection process. It is due to the lack of cooperation from participants from other races. The final limitation was the use of convenience sampling, which limits the generalizability of the study and increases the risk of bias. Furthermore, using a qualitative research approach might produce more robust results and enable researchers to gain a broader knowledge of the caregivers’ emotions and experiences. Future research should expand the number of the sample to gain generalization by using the probability sampling method and increasing the number of settings to gain a better insight into family caregivers of older people.