Providing care to relatives with mental illness: reactions and distress among primary informal caregivers

Several socio-demographic correlates of reactions to caregiving were identified in this study including age, education level, employment status, income, and ethnicity. All four domains of caregiving reactions: impact on schedule and health, impact on finance, lack of family support, and caregiver esteem were associated with psychological distress as assessed by the PHQ-9. The associations remained significant even after controlling for socio-demographic variables. Some of the findings reported here are consistent with results from other studies in the literature [27, 28].

In our study, caregivers in the age group of 35–49 years perceived significantly higher impact in terms of disrupted schedule and affected health as compared to caregivers between 21 and 34 years old. One possible explanation could be that caregivers in this age group are more likely to have taken on multiple social roles with greater commitments. Besides being a caregiver, he/she might be a parent, a spouse and an employee with more responsibilities. Demands and responsibilities stemming from these various assumed roles might have contributed to the perceived impact of caregiving on schedule and health [43].

Being unemployed was associated with stronger impact in the domain of finance and this association had taken into account the level of income earned. Additional analysis conducted found that unemployed caregivers also perceived greater impact on finance as compared to economically inactive caregivers. Caregivers categorized as economically inactive in this study were housewives, students or retired individuals who probably felt less of an obligation to be employed and to contribute to caregiving expenses. This might suggest that rather than the financial resources, it was the expectation or the obligation of the caregiver to have a job that contributed to the impact felt.

Caregivers earning less than $2000 a month felt a greater lack of family support than caregivers who were earning $4000 and above. Given that past literature review found respite care services beneficial for caregivers [44] and another study that reported an inverse association between receiving assistance from a foreign domestic helper and negative reaction from caregiving [32], a plausible explanation to the association could be that caregivers in the former category were not as financially competent to engage such additional help for the caregiving task, and thus required more assistance from their family members. Future studies can look into the pathways through which having help from external support in the form of respite care services or domestic helpers can reduce negative reactions to caregiving.

An interesting ethnic difference emerged in the positive domain of reactions to caregiving. Compared to caregivers of Indian and Malay ethnicity, Chinese caregivers perceived lower caregiver esteem. One way of looking at this may be through the construct of filial piety (i.e. respect and care for one’s elders). Although this construct originated from traditional Chinese Confucian values, there is evidence that it is not unique to Chinese culture. A study found that Chinese Singaporeans endorsed traditional values such as filial piety less than their non-Chinese counterparts (i.e. Malays and Indians) [45]. Additionally, a study examining filial piety among Chinese in Singapore pointed out the symbolic status of the construct as a possible mere display for the purpose of ‘face saving’ in certain cases [46]. Taking these findings in context, it suggests that Chinese caregivers might have a stronger sense of obligation to provide care for their relatives and this could have influenced their feeling of esteem in that providing care was not of altruistic intention but out of duty. Having a stronger sense of obligation was in fact found to be positively associated with subjective burden in caregivers [47].

Another main finding from this study was that each of the domains of caregiving was associated with caregiver distress. It is possible that caregivers who were distressed had poorer coping abilities and hence had stronger reactions from caregiving. It was found that caregivers with higher depressed mood had more difficulties performing physical tasks [48], which might have affected their ability to participate in activities that promote their health and overall well-being. It is also plausible to conceive that caregivers with elevated distress were unable to manage their finances or to effectively communicate their needs to family members. The association can also be understood using Pearlin et al’s stress process model where caregiving duties act as secondary role strains that are in conflict with other domains of life, thus causing an impact on the mental well-being of caregivers [49]. For instance a reduction in engagement in social and physical activities due to competing time, which could have attenuating effects on chronic stress from caregiving, can possibly precipitate depressive symptoms in caregivers [50‐52].

Findings from this study have several important implications for caregivers. Firstly, our results would suggest that educating caregivers on effectively managing their schedule, attending to their health issues, addressing their financial needs, facilitating support from their family members in caregiving tasks, and enhancing their esteem might be useful in reducing their distress. For example, health awareness initiatives can help to draw attention to the impact of caregiving on caregiver’s mental well-being and possible ways to alleviate the effects. Given the findings from this study, such initiatives could target caregivers with certain demographics- those in the late thirties to forties and those who are unemployed as they were caregivers who perceived greater impact from caregiving. Chinese caregivers could also potentially benefit from interventions that serve to enhance the way they appraise their caregiving role and thereby increasing their esteem as a caregiver. This could be attained through positive encouragement and acknowledgement of the contributions made by caregivers in improving the lives of patients, possibly through affirmative communication with healthcare professionals or even their own family members [53, 54]. Secondly, these efforts and initiatives should be complemented with a dissemination of information on respite care services. Given that studies have found the positive impact of respite care services on caregivers’ quality of life [55] and depressive symptomatology [56], these services can provide caregivers with a temporary relief from their caregiving duties to attend relevant activities or handle personal matters. Last but not least, psychoeducation for distressed caregivers can now be understood in the context of the impact of reactions to caregiving on their mental health. Counselling goals can be targeted to address needs in the various domains, for instance managing expectations of family members’ assistance in caregiving tasks.

Besides involving caregivers themselves as the main agent of change, the wider public and policymakers have a role to play. An increase in the public awareness of the challenges faced by caregivers can serve to generate more supportive social responses for better caregiver support, possibly advocating it as a national social agenda. For example, employers can take the lead by allowing some flexibility in the work arrangements of employees who are caregivers. This could help caregivers in managing their schedule to accommodate caregiving responsibilities. Our findings suggest that unemployed caregivers and those with lower education merit more attention due to the greater impact on these groups of caregivers. These results can thus help in crafting social policies targeted at these groups of caregivers, possibly through subsidies for paid care services or care support educational programs. Recognising that taking on a caregiver role can occur at any point in life and having policies ascribed to the role, rather than looking at the status of being a working adult, is what a care-centred policy should be like and it would be needed to provide adequate support for caregivers [57].

However, the results and implications should be considered in view of the limitations of the study. The study being a cross-sectional survey limits the ability to draw conclusions regarding causality. Patient characteristics such as age and depressive symptoms were not explored in this study which could have an impact on caregiver reactions [30, 58] and distress [59, 60]. Analysis by diagnosis of patients could not be conducted due to an insufficient sample size in some diagnostic groups. The main intention of this study was to focus on caregiver characteristics rather than other factors such as patient demographics and caregiving tasks. Future studies can thus examine the effects of patient profile and caregiving tasks on caregiver reactions and distress. Given that the caregivers of our study sample co-resided with the care recipient, this may limit the generalisability of our findings to countries where co-residency among caregivers and care recipient is not a norm. This may have an effect on the hours spent on caring and subsequently the level of distress on the caregivers [61, 62]. These limitations notwithstanding, one major strength of this study lies in utilizing an instrument (i.e. the Caregiver Reaction Assessment) that was previously validated in the local setting. Additionally, participants from different ethnic groups were included in the study and this enhanced the reliability of the findings.