Caregiver Burden: Support Groups and Mental Health Impact

Introduction

The relevance of caregivers in assisting persons with disabilities or chronic illnesses cannot be overstated. Caregivers play a vital role in ensuring the continuous care of their patients — particularly in ensuring that all prescriptions are filled and that the patient has access to all necessary tools (such as medical equipment including wheelchairs and oxygen machines) and services to promote their wellbeing and comfort. The responsibilities shouldered by caregivers are therefore immense. Owing to their close interaction with patients and the effort invested in that role, caregivers are prone to both psychological and physical morbidity. It follows that when it comes to alleviating caregiver burden, the importance of having formal support mechanisms targeting caregivers cannot be overstated.

Assessment of the Phenomena

In the words of Vanderwerker, Laff, Kadan-Lottick, McColl, and Prigerson (2005), "caregiving has been broadly defined as the act of providing unpaid or informal support and assistance to an older person with physical, mental impairment, or both" (p. 12). As the authors further observe, such care can encompass a wide range of functions including monitoring and supervision, household activity management, emotional support, and personal care. In most instances, caregivers are family members and therefore unpaid. However, there are also formal caregivers who have received special training and education in providing care to terminally ill or disabled patients. One of the main outcome predictors — for both persons requiring caregiver support and the caregivers themselves — is caregiver burden, which refers to the stress and anxiety encountered by caregivers in the caregiving scenario.

Despite being rewarding, providing care to hospice patients can be an onerous task. In the words of Berry, Dalwadi, and Jacobson (2017), "caregiving also is a high-risk occupation whose effects on the caregiver have been linked empirically to diminished quality of life, depression, impaired immunity, heart disease, and early death" (p. 86). In seeking to assess the need for support groups in minimizing caregiver burden, it is prudent to first highlight the negative impact of the caregiving role and the toll it takes on the psychological, social, and physical wellbeing of caregivers.

Caregiving comes with numerous medical and physical responsibilities. Examples include medication administration and provision of personal hygiene to persons with terminal illnesses. In some cases, terminally ill patients have increasingly demanding needs that grow over time. Terminal cancer is a clear example: changes in patient status, medication and equipment management, and comfort maintenance can all become pressing concerns for caregivers. The effect of working long hours and addressing demanding situations can also result in deteriorating physical health.

Caregiving also carries significant psychological and emotional demands. When dealing with terminally ill patients or patients with disabilities, caregivers are likely to experience anxiety, feelings of helplessness and hopelessness, and fear. Burnout can result from long working hours and sleep deprivation. In a 2005 study of caregivers providing care to cancer patients, it was found that 13 in 100 caregivers had a psychiatric disorder as per the DSM-IV criteria (Vanderwerker et al., 2005). According to the authors, "the prevalence of psychiatric disorders was as follows: panic disorder, 8.0%; major depressive disorder, 4.5%; post-traumatic stress disorder, 4.0%; and generalized anxiety disorder, 3.5%" (Vanderwerker et al., 2005, p. 14). It should also be noted that in the course of caregiving, caregivers are often exposed to a wide range of risk factors that can disturb or aggravate their mental health, including multiple stressors and chronic sleeplessness.

In addition to these concerns, caregivers must also contend with social burden. Owing to the demanding nature of their roles and responsibilities, caregivers risk becoming isolated from family, friends, and loved ones. According to Vanderwerker et al. (2005), caregivers are sometimes forced to reduce or eliminate recreational and social outings due to the demands of their role. This problem can be compounded by a lack of understanding on the part of family and friends, and if left unaddressed over the long term, it can result in strained social relationships.

On the basis of these factors, there is a need to explore appropriate interventions to ensure that caregivers can successfully fulfill their roles while being adequately protected from adverse outcomes. One approach that has proven effective is the use of support groups. Past research has demonstrated this to be the case among dementia caregivers (Grabel, Trilling, Donath, and Luttenberger, 2010). In the words of the authors, "support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers" (Grabel et al., 2010, p. 217). It is important to note, however, that as the authors further point out, these services can only be utilized if caregivers are made aware of their relevance. It is within support groups that caregivers can share their strains and stresses and receive the emotional support they need within an information-exchange framework.

Historical and Societal Perspective

According to Hoffmann and Mitchell (2007), although the caregiver burden "concept is relatively new in the literature, the responsibility and ultimately consequences of caring for another family member has existed for centuries" (p. 8). As the authors further point out, research on this concept has grown considerably over the last few decades. In basic terms, caregiver burden has been conceptualized as the anxiety and stress that caregivers experience in the course of executing their roles and responsibilities. For this reason, the importance of evaluating stressors in a subjective manner cannot be overstated. As Hoffmann and Mitchell (2007) observe, caregiving was historically a role played predominantly by female family members; however, over time, other family members — including sons and husbands — began to take on this role.

At the conceptual foundation of caregiver burden evaluation is Lazarus and Folkman's Transactional Model. Developed in 1987, the model "explained coping as a phenomenon that involves both cognitive and behavioral responses that individuals use in an attempt to manage internal and/or external stressors perceived to exceed their personal resources" (Berry, Dalwadi, and Jacobson, 2017, p. 88). This model provides a useful conceptual basis for evaluating the caregiving scenario and understanding how caregivers respond to the demands placed upon them.