Caregiver Burden in Hospice Care: Psychosocial Interventions

Background and Significance

The critical importance of caregivers cannot be overemphasized when it comes to providing care for people with chronic ailments and disabilities. Caregivers play a crucial role in end-of-life struggles: they manage the patient's condition, administer medication, and work toward the highest achievable level of well-being under the circumstances. Because caregivers interact closely — and often personally — with patients throughout the course of illness, they are also prone to physical and psychological morbidities. Mechanisms that provide relief to caregivers are therefore essential.

Providing hospice care has a significant effect on family caregivers' well-being, with the greatest impact on their mental health. The demanding duties, coupled with suboptimal working conditions, can place immense stress on a family caregiver. This stress is exacerbated when the caregiver works with little or no support, preparation, or resources. If left unchecked, prolonged stress deteriorates mental health and, subsequently, physical well-being. The resulting mental health decline manifests as anxiety, depression, mental suffering, feelings of vulnerability, and drops in the quality of care provided (Northouse, Katapodi, Schafenacker, & Weiss, 2012).

There are multiple reasons why the mental suffering reported by caregivers must be addressed. Long-term studies on caregivers and their patients have reported poor patient adjustment to the care given, as the caregiver's emotional distress can become mirrored in the patient over time. Maintaining care quality becomes more challenging for an emotionally unsettled caregiver. Additionally, a caregiver's emotional imbalance triggers changes in the immune system, increasing the risk of autoimmune diseases, impaired glucose regulation, and cardiovascular disease. These developments decrease the caregiver's quality of life and, consequently, reduce the caregiver's ability to function optimally (Northouse, Katapodi, Schafenacker, & Weiss, 2012).

Studies assessing the benefits of psychosocial interventions for caregivers provide clear evidence of the need for such interventions. These interventions relieve the caregiver's pressure and reduce the feelings of emotional disturbance brought on by the protracted stress of caregiving duties. Research into evidence-based interventions can yield profound mental health benefits for caregivers, and maximizing those benefits through well-designed psychosocial programs is a key goal (McMillan et al., 2006).

An estimated 52 million Americans assist an ailing or disabled family member, and high levels of stress in family caregivers have been linked to depression, health problems, and elevated mortality rates. Psychosocial interventions have been examined as a potential solution. Research findings indicate that family caregivers will greatly benefit from such interventions, as they will be better equipped to cope emotionally and physically and will gain practical skills to handle challenges during duty performance. A meta-analysis of the benefits of these interventions for family caregivers revealed significant clinical improvement in caregiver psychological health.

Previous studies on family caregivers attending to hospice patients with incurable cancer reported varying degrees of high distress in 55–90% of family caregivers (FCs). These stress levels were measured at different points during the delivery of care. Data gathered to examine the influence of external factors on FC distress levels drew little inference from the effect of gender. Other psychosocial factors — such as the FC's relationship to the patient and the amount of self-care the FC engaged in — significantly affected distress levels (Oliver et al., 2017).

Data from a short study on family members providing hospice care for terminally ill patients reported high stress levels attributed to the physical, psychological, and economic demands of caregiving, compounded by awareness of the patient's impending death. A majority of family caregivers report an average of 115 hours of caregiving per week, and assessments of these caregivers reveal depression and health problems more typically associated with much later stages of life. Maintaining the caregiver's quality of life during the period of hospice care is necessary, yet little evidence is available on how this can be achieved for FCs attending to patients at the end of life (McMillan et al., 2006).

Assessment of the Phenomena

According to Vanderwerker, Laff, Kadan-Lottick, McColl, and Prigerson (2005), caregiving generally refers to the provision of informal support or unpaid assistance to mentally and/or physically impaired older persons. Caregiving encompasses a variety of functions: emotional support, supervision and monitoring, personal care, and household activity management. Because most caregivers are family members providing informal support, they are frequently unpaid. In cases of terminal illness or complete disability, however, formal caregiving becomes a prerequisite — here, specially educated and trained caregivers provide services. The caregiver burden is one of the main outcome predictors for both patients and caregivers, with anxiety and stress during caregiving sessions being the primary contributing factors.

Although caregiving is a rewarding initiative, caring for hospice patients can be an exceptionally difficult task. Berry, Dalwadi, and Jacobson (2017) emphasize that caregiving involves high risk: its effects on the caregiver include low well-being, impaired immunity, cardiac complications, depression, and increased mortality (p. 86). In assessing the need for support to reduce caregiver burden, it is crucial to examine the psychological, physical, and social dimensions of caregiving. Tasks include medication administration and facilitating personal hygiene for those with terminal ailments.

Caregiving also carries significant psychological and emotional demands. When handling patients with terminal illnesses or disabilities, caregivers often experience anxiety, helplessness, fear, and hopelessness. Burnout can result from long working hours and sleep deprivation. A 2005 study found that approximately 13% of caregivers attending to cancer patients had a psychiatric complication based on DSM-IV criteria (Vanderwerker et al., 2005).

The prevalence of psychiatric disorders in that study was reported as follows: 8% panic disorder, 4.5% major depressive disorder, 4% post-traumatic stress disorder, and 3.5% generalized anxiety disorder (Vanderwerker et al., 2005, p. 14). Risk factors contributing to these complications include sleeplessness and stressors of various kinds.

Beyond these concerns, the social burden on caregivers is considerable. The risk of isolation from friends and family is real: owing to the demanding nature of their work, caregivers are compelled to significantly reduce their recreational time (Vanderwerker et al., 2005). If family members do not understand the demands of caregiving, the problem can worsen, leading to strained social relationships.

These concerns underscore the urgency of establishing effective interventions to help caregivers perform their duties while still maintaining a normal life. Support groups have proved helpful in such situations. Earlier research has confirmed the positive effect of support groups on dementia caregivers (Grabel, Trilling, Donath, & Luttenberger, 2010). The authors note that support groups providing open discussion, the exchange of experiences, advice, and information work well for caregivers (p. 217). It should be noted, however, that these services can only be utilized if caregivers are informed of their availability and importance.

The physical disadvantages a caregiver may encounter include a constant lack of energy, poor sleep patterns, and inadequate nutrition. The emotional stress can encompass anxiety, depressive moods, and a persistently unsettled mental state as the caregiver awaits the patient's inevitable death.

The state of the patient's health before death can also leave a lasting mark on the caregiver. Research on 152 caregivers of cancer patients with unrelieved symptoms found a direct correlation between the number of symptoms the patient manifested and the caregiver's stress levels. Constant attention to relieving the pain caused by multiple symptoms reduced the time available to the caregiver for daily activities (Doris, 2007).

An assessment of the greatest risks caregivers face identified anxiety as the most prevalent concern. Studies of anxiety prevalence rates in caregivers reported values between 32% and 72%. Studies of depression prevalence reported lower values ranging from 16% to 69% (Oechsle et al., 2019). Research by Rumploid (2016), cited in Oechsle et al. (2019), monitored the development and progression of anxiety and depressive symptoms in caregivers and indicated that caregiver anxiety lessened over time from the point of an incurable cancer diagnosis, while depressive symptoms remained stable. These depressive symptoms were linked to self-care practices, the caregiver's mental burden around the patient's impending death, and the patient's overall condition prior to death. The caregiver's sex could not be attributed as a factor in the development of depressive symptoms.

Societal and Historical Perspective

Hospices were designated places to care for those with terminal ailments at the end of the 19th century in England and Ireland. Dr. Cicely Saunders developed the modern concept of hospice in England, and the first modern hospice — St. Christopher's — was established under her direction. The philosophy of end-of-life care and hospice practice has since spread globally. In the United States, hospices were originally managed by volunteers caring for dying patients. In the 1980s, Medicare allowed formal hospice benefits to be covered under medical insurance, and hospice became a core element of Medicare Part A. In the U.S. today, thousands of hospice centers operate and continue to expand as patients live longer with terminal conditions, making hospice an increasingly acceptable option during disease progression. Physicians specializing in hospice practice began receiving board certification in the 1990s. The end of life is a highly sensitive period encompassing financial, interpersonal, psychosocial, spiritual, and medical dimensions; hospice aims to reduce suffering throughout the dying process (Nabili, 2018).

Social support for caregivers is a multidimensional concept that varies widely. The targeted caregiver does not always receive what they regard as sufficient support. Research accounts for a notable portion of the variance in family caregiver quality of life. Whether real or perceived, insufficient support correlates with high psychological and physical exhaustion. Many caregivers report that their social support diminishes over time. Social isolation negatively affects health and well-being, and even when family support is present, patients and family caregivers may still report feelings of increasing isolation, which can exacerbate stress and affect quality of life for everyone involved. Caregivers' deep involvement in patient care can so thoroughly consume their lives that socialization is effectively absent. Contact support from other caregivers, online support groups, social networks, and social media platforms can help bridge this gap (Otis-Green & Juarez, 2012).

Current research into why hospice care patients prefer to receive care at home rather than in a facility shows that this preference is not always motivated by a desire to have family members involved in their care. As reported by the National Hospice and Palliative Care Organization (NHPCO, 2012), 66.4% of hospice care patients chose to receive care at home in 2011. Further study of this preference revealed that some hospice patients chose not to receive care at home precisely because of the emotional stress it would place on family members — they wished to spare their loved ones the pain of watching their deterioration (Broom & Kirby, 2012).

A study examining family members' willingness to accept responsibility for caring for a terminally ill patient found that those who had reservations cited a lack of competence, emotional imbalance, and an inability to cope with death as their primary concerns (Jack et al., 2015). These concerns are generally well-founded: most family caregivers, before assuming the role, have little to no formal preparation. Patients may develop symptoms the caregiver is unsure how to handle, and early caregiving is often tentative. Jack et al. (2015) noted that numerous family caregivers believed no external help was available, which made them hesitant to request assistance. A comparative study found the challenges faced by unprepared FCs in India and the United States to be strikingly similar — primarily difficulty grasping the physical and psychosocial dimensions of caregiving duty.

The caregiver burden is a relatively new concept in the research literature (Hoffmann & Mitchell, 2007), but the practical responsibility and consequences of caring for a family member have existed for centuries. Research intensity on this concept has increased markedly in recent decades. Caregiving has consistently been found to generate anxiety and stress as caregivers perform their duties. Hoffmann and Mitchell (2007) observe that caregiving was historically performed primarily by female family members, though sons and husbands have increasingly taken on the role over time. The Folkman and Lazarus Transactional Model, developed in 1987, attempts to estimate the foundational role played by caregivers and explains how behavioral and cognitive responses are used to manage both external and internal stressors that exceed personal resources (Berry, Dalwadi, & Jacobson, 2017, p. 88).

The practice of providing caregiving services in the patient's home continues to be prevalent in the United States. An enriched home environment is chosen to maximize patient comfort, and the caregiver must operate within this environment — administering medications and facilitating other end-of-life provisions. The caregiver — who may be a spouse, adult child, or other family member — is responsible for the patient's daily care. In some cases, the caregiver becomes so focused on the patient's needs that their own needs go unmet, which can be harmful to the caregiver over time (Engen, 2017).

Caregivers provide vital services in both informal and formal settings across the United States and may be considered a functional component of the broader healthcare system, even though their roles differ significantly across settings. Caregivers can be categorized by the nature of their caregiving — including long-distance and episodic caregiving — particularly in informal contexts where the caregiver is a friend or family member.

According to the AARP Public Policy Institute (2015), 43.5 million American adults provided caregiving services in the prior 12-month period. The survey further established that 14.3% of U.S. adults had offered caregiving services to individuals aged 50 and above. In most cases, 60% of caregivers were female and 40% were male.

Data from the Gallup–Healthways Well-Being Index indicated that caregivers are at greater risk of experiencing negative emotional health outcomes than non-caregivers. Caregivers have a 49% higher likelihood of being diagnosed with depression compared to non-caregivers, and they are more likely to experience stress and worry. According to the survey, 17% of caregivers experienced a decline in general health attributable to their caregiving role. Those caring for a spouse experienced an even higher rate of 27%, while 40–70% of their family members exhibit symptoms of depression. Notably, a quarter of these caregivers are diagnosed with major depression. Caregivers providing full-time services demonstrate poorer emotional health than those without caregiving responsibilities, and the effects of caregiving appear to be most pronounced for individuals under 45 years of age (Whitters, 2012).