Coping Strategies among Family Caregivers of Patients with Chronic Illness: A Qualitative Grounded Theory Study

INTRODUCTION

The global burden of chronic illnesses such as cardiovascular diseases, cancer, diabetes and chronic respiratory diseases has escalated which then positioning them as the foremost cause of death globally.^[1] The prevalence of chronic illnesses continues to increase each year, exerting a significant impact on the range of sectors, including the economy in many countries.^[2] This rising load has led to an increased patients’ reliance on their caregivers. Caregivers play an important role in supporting patients’ daily functioning by offering a range of assistance, including emotional, physical and social support.^[3] Nonetheless, the caregiving role is often associated with considerable burdens, such as financial issues,^[4] emotional and psychological strain,^[5] health issues,^[6] and social isolation. Lack of emotional and social support received by caregivers intensifies the burden that they carry. All the challenges encountered by caregivers are closely linked to their overall quality of life.^[7] In the absence of appropriate coping strategies, caregivers are likely to experience significant mental health challenges. Therefore, it is essential to determine effective coping strategies for caregivers. However, it should be acknowledged that the coping strategies are not one size that fits all; they must be adapted to suit individuals’ varying life situations and personal strengths.

Caregivers often face considerable emotional demands; hence, coping strategies play an important role in buffering caregivers from psychological stress and emotional burden. Studies have consistently found that the use of adaptive coping mechanisms such as positive reframing and acceptance is effective in reducing stress. Conversely, maladaptive coping responses such as substance abuse and self-distraction tend to exacerbate stress and burnout.^[8] While caregivers adopted effective coping practices, their mental stability and well-being improved, enabling them to provide effective care to the patient. Over time, coping skills serve as an important preventative measure against mental health issues among caregivers. Understanding the coping strategies adopted by caregivers is therefore essential, as it has a positive impact on both the caregiver and the care recipient. However, while caregiving is a common experience, there remains a limited understanding of how Malaysian caregivers manage the persistent stress associated with chronic illness caregiving.

Research in coping strategies among Malaysian caregivers remains sparse and insufficiently grounded in the local cultural and healthcare context. Caregivers in Malaysia may utilise a range of coping strategies that are deeply shaped by cultural and religious norms. However, the persistent burden and mental health challenges among caregivers point to the urgent need for more targeted research to inform culturally relevant and effective support systems. Therefore, this study sought to investigate the coping strategies used by family caregivers of chronic illness patients through an inductive lens, by employing a grounded theory approach. Consistent with grounded theory principles, the initial review of literature and theoretical frameworks was deliberately limited, focusing solely on general aspects of chronic illness and the methodological foundations of grounded theory. This approach was adopted to minimise the potential influence of pre-existing theories or findings on the researcher’s analytical perspective.^[9]

MATERIALS AND METHODS

This study received ethical approval from the University Research Ethics Unit (UM.TNC2/UMREC-996). Caregivers were informed about the study’s objectives, procedures, ethical considerations and other important aspects, and all of them signed the informed consent. We employed the classic grounded theory (Glasserian) method to develop a framework that elucidates the coping strategies of family caregivers. This approach was chosen due to its ability to generate a framework directly from data, which is particularly useful to investigate less-studied experiences such as caregiving. It allows researchers to develop new and original insights based on participants’ lived experiences, without relying on pre-existing models.

RESULTS

DISCUSSION

Support systems play a vital role in promoting the well-being and emotional resilience of caregivers, particularly those caring for chronically ill patients. Support systems consist of family members, friends, employers and a caregiver support group. Family members fulfil both emotional and physical needs, thereby helping to alleviate caregiver stress. Friends often serve as informal sources of support, providing a platform for social interaction. In addition, employers are essential to provide various forms of job benefits such as unrecorded leave, flexible working arrangements and other workplace benefits. Support groups made up of fellow caregivers offer a valuable coping strategy, allowing caregivers to exchange experiences and thoughts, gain insights and acquire new knowledge among those who face similar challenges.^[12] On the other hand, practising positive behavioural strategies such as self-care is important. The practice of self-care, such as seeking professional help from counsellors or therapists who can offer psychological support, is one of the strategies that can help caregivers in maintaining their well-being. In addition, caregivers reported that they engaged in stress management techniques in difficult situations. Caregivers also allowed themselves to acknowledge and express their feelings through various platforms, such as journal writing. Undeniably, practising self-care behaviours has been linked to improved caregiver well-being, greater preparedness and enhanced decision-making.^[13,14] These strategies not only benefit the caregivers themselves but also indirectly enhance the quality of care provided to patients.

Our findings also highlighted that religious coping strategies are among the most common strategies practised by caregivers. Some caregivers who have good trust in God believe that God knows what is best for them, even in a hard time. They learnt to accept what God has determined for them. In difficult times, caregivers often return to God by practising religious acts such as prayer and dhikr. By doing that, they get a sense of peacefulness that they did not get through other means. The inner peacefulness helped them in finding meaning in the purpose of the caregiving role, thereby fostering the inner strength in facing caregiving challenges.^[15,16] Meanwhile, the ability of caregivers to adjust themselves in difficult situations is crucial. Self-adjustment can be defined as an individual’s ability to regulate emotions, thoughts and behaviours to respond more effectively to caregiving demands. This ability includes the ability to manage own emotions, such as sadness, anger, frustration and guilt. All of these emotions, if left untreated, can be a risk factor for mental issues, thereby affecting the quality of care provided. In addition, cognitive coping strategies such as accepting reality and finding meaning in the caregiving journey may substantially contribute to stabilising emotion and well-being.^[17]

The current findings offer several theoretical implications. Notably, there is a meaningful connection with Pearlin’s Stress Process Model for Caregivers.^[18] This model identifies multiple sources of caregivers’ stress, including contextual factors, and both primary and secondary stressors, which are reflected in the emerging themes in our analysis. However, these sources do not necessarily lead to significant stress if caregivers possess effective coping skills. In the present study, we illustrated how coping strategies were applied in the lived experiences of caregivers, which could potentially mitigate the impact of stressors. This also indicates Pearlin’s premise that coping strategies as mediators between stress and caregiver outcome, which can enhance resilience. Second, the support systems as a coping strategy by caregivers can be reflected with structural family therapy (SFT).^[19] Family dynamics are integral to the caregiving context. Each family subsystem, such as the marital, parental and sibling subsystems, plays its role in the family. Well-functioning family systems may serve as vital support sources and become a powerful coping strategy for caregivers. This supports the SFT proposition that the functionality of family subsystems is not only a structural element within the family but also a determining factor in a caregiver’s coping.

An in-depth understanding of the coping strategies of family caregivers is crucial. The insights of lived experiences of family caregivers and their coping strategies may help counsellors in their counselling process, as they provide a basic guideline for counsellors and other caregivers in understanding the caregivers’ struggles. Furthermore, other caregivers may consider adopting or adapting these coping strategies to manage their caregiving responsibilities more effectively. The findings also contribute meaningfully to the enhancement of nursing practices in the management of chronic illness. The coping strategies identified through this study may inform nursing professionals of approaches that can be integrated into their practice when dealing with patients and supporting caregivers. This information can also be communicated to patients and their families as part of the preparation and support provided for caregiving tasks, ultimately promoting better caregiver well-being and patient care outcomes.

In this study, we identified a few limitations that need consideration for future researchers interested in conducting a similar study. This study is conducted within Malaysia’s sociocultural context, which is characterised by collectivist norms and strong religious beliefs. These norms and values shaped the caregiving roles and coping strategies of caregivers. However, the predominance of Malay and Islamic participants impedes the breadth and representativeness of the findings. In light of these limitations, future research should therefore consider undertaking comparative studies involving caregivers from different cultural backgrounds. Such comparisons could yield more comprehensive and culturally grounded insights into caregiving practices. Inclusion of the voices of care recipients would allow for data triangulation and enrich the understanding of the caregiver-patient dynamic and the extended care network. Targeted recruitment in multi-ethnic and religious groups can ensure the inclusion of a broader study population.

CONCLUSION

This study offers detailed insight into the coping strategies used by family caregivers in managing the care of patients with chronic illnesses in Malaysia. The grounded theory method was used to document their lived experiences, which are influenced by multiple circumstances. The findings suggest that there is no single, universally effective coping strategy that is equally successful for all caregivers. Instead, these strategies should be tailored to individual preferences and context. Therefore, it is important to begin with the dissemination of relevant knowledge, sharing caring experiences and providing accessible psychoeducation to empower and support caregivers in their roles. Integrating culturally sensitive coping strategies into nursing practice and community-based services could strengthen caregiver resilience, thereby contributing to improved patient care quality in Malaysia.