Health Risk Factors in Caregivers of Terminal Cancer Patients

A Pilot Study

Alice Corà, MS; Manuela Partinico, MS; Marianna Munafò, PhD; Daniela Palomba, MD

Disclosures

Cancer Nurs. 2012;35(1):39-47. 

In This Article

Abstract and Introduction

Abstract

Background: A large body of literature sustains the association between long-lasting caregiving for impaired significant others and increased health risk. Depression, elevated heart rate, and blood pressure at rest are key measures of health risk, mostly cardiovascular, which have been generally studied in caregivers of patients affected by dementia or chronic illness. Limited research has been conducted on emotional and cardiovascular impact of family caregiving for terminally ill cancer patients.
Objective: The aim of the present study was to examine psychological and cardiovascular responses in terminal cancer caregivers. Methods: Twenty relative caregivers who provided in-home or hospice care to terminally ill cancer patients and 20 age- and gender-matched controls were interviewed and assessed for emotional distress. Measures of cardiovascular risk, blood pressure, and heart rate were recorded at rest in 4 separate sessions.
Results: Caregivers reported higher levels of depression, state anxiety, and more sleep dysfunctions than controls. They also revealed heightened systolic and diastolic blood pressure in some measurements. Moreover, elevation of heart rate was associated with caregiving length.
Conclusions: The caregiving stressor is associated with considerable psychological vulnerability, sleep disorders, and risk of alterations in the cardiovascular system, which seem to be modulated by caregiving characteristics.
Implications for Practice: This study shows the importance of screening caregivers for psychological as well as physical symptoms and disorders. An awareness of burden of terminal cancer caregivers could lead to timely proactive preventive interventions on their physical and mental health, to decrease negative outcomes.

Introduction

The role of the caregiver, which has always been recognized as a socioeconomic value to society, will be even more important in the future because the elderly population and prevalence of chronic illness are growing.[1] Given the critical functions that caregivers perform, both government agencies and researchers have been concerned with understanding and preventing caregiving health consequences, based on the assumption that negative responses to caregiving may interfere with the caregiver's ability to provide care or to care for himself/herself.

The stress process model by Pearlin and coworkers[2] and its applications to the context of cancer[3–5] and end-of-life care[6–8] indicate that the core variables in caregiving are primary stressors (eg, caregiving demands) that can proliferate in secondary ones (eg, interpersonal relationship issues, social functioning). Psychological and physical outcomes are modulated not only by caregiver's resources and socioemotional support, but also by contextual variables related to the caregiver (eg, age, education, employment status, health status) and to the patient (eg, stage of cancer, course of illness, and symptoms). Caregivers are commonly family members who undertake the majority of the assistance. Therefore, levels of family cohesion, patient's and family adjustment, and emotional and practical support by relatives influence the family caregiving process.[9]

Caregiving is regarded as a chronically stressful process with potentially negative psychological and physical consequences. Most research concerns caregiving provided by family members of elderly or dementia patients.[10,11] With respect to the psychological outcomes, reviews and meta-analysis reveal increased psychiatric disorders, mostly anxiety disorders and depression, in caregivers than controls.[12–14] Moreover, compared with the general population, caregivers are more likely to access mental health services and to receive psychopharmacological treatments.[14,15] Caregiving is also considered a risk factor for physical health, because it may set forth a cascade of stress responses through activation of the hypothalamic-pituitaryadrenal axis and the sympathetic adrenomedullary axis, involving humoral, immunologic, cardiovascular, and metabolic alterations.[16,17] Caregiving strain has been reported as an independent risk factor for mortality among elderly spousal caregivers.[18] Moreover, a large amount of literature shows an increased risk of coronary heart disease in caregivers of demented patients compared with noncaregivers.[17,19] As regards the cardiovascular risk factors, caregivers, mostly when elderly, show higher systolic blood pressure (SBP) and increased risk for hypertension over time, compared with noncaregivers.[20–22] Risk of cardiovascular alterations can be associated with sleep disorders[23,24] and can be modulated by the caregiver's emotional state, quality of the relationship between caregiver and care recipient, care demands, and perceived social support.[25,26] Hypertensive caregivers also express exaggerated cardiovascular reactivity (blood pressure [BP] and heart rate [HR]) to acute stressors.[27]

Compared with other caregiving contexts (eg, caring for patients with progressive neurological disorders), the framework of cancer caregiving presents distinctive characteristics: caregivers are usually younger and provide care during shorter periods and for younger patients who often show specific symptoms (eg, pain or vomiting).[6,28] Caring for a dying patient creates considerable stress in the life of caregivers, affecting emotional, physical, social, and financial areas. Moreover, in the terminal phase, caregivers are faced with the dual challenges of providing care for the patient and dealing with anticipatory grief. These concerns are well recognized by health organizations that consider patients and families as a unit of care and offer them a support system during the patient's sickness and bereavement.[29] Thus, palliative care also includes psychological support to relatives during bereavement, which is a further stressor that involves physical and mental health consequences.[30–32]

Reviews on cancer caregiving describe increased anxiety, depressive and psychosomatic symptoms, particularly during the late stages of cancer.[33–38] It has been reported that 13% of caregivers of patients with advanced cancer meet the criteria for a psychiatric disorder, and 25% of them access treatment for mental health.[39] Moreover, approximately 40% of significant others of patients dying of lung cancer show symptoms of strain (depression, burden, and decrease in quality of life).[40] Family members involved in caregiving with a strong impact on daily activities often report fatigue and exhaustion associated with cognitive dysfunctions and physical impairments.[41,42]

Unfortunately, only a few studies with caregivers of terminally ill cancer patients have included control groups: Karlin and Retzlaff[43] and Chentsova-Dutton and coworkers[28] showed that caregivers of terminally ill cancer patients have higher levels of anxiety, depression, anger and psychosomatic symptoms than controls. Literature on physical health consequences in caregivers of terminally ill cancer patients is also very limited. Chentsova-Dutton and coworkers[28] reported a higher number of nonpsychiatric hospitalizations in the last year, in caregivers than in controls. Moreover, despite the previously mentioned literature on other forms of caregiving, the association between emotional distress and cardiovascular changes has received no attention in research on caregivers of terminally ill cancer patients. In a single study, these indices have been assessed at the early stage of cancer, and results showed an increased sympathetic cardiac control.[44]

The present study was aimed at analyzing psychological and physical concerns in caregivers of terminally ill cancer patients compared with age- and gender-matched controls. Moreover, unique features of our design include the comparison of both physical health functioning (particularly cardiovascular variables) and emotional distress. Psychological variables (depression and mood disorders, anxiety, and anger) were analyzed. These affective states have also been associated with physical health problems, particularly cardiovascular risk.[45,46] Therefore, BP and HR were measured in rest conditions. A wide literature indicates that resting BP and HR, even if not clinically relevant, are significant precursors of cardiovascular risk.[47–55] Moreover, several studies have suggested a potential association between alterations of these indices and caregiving,[20–22] or depression.[56–58]

We hypothesized the following:

  1. Caregivers would report higher levels of depression, anxiety, anger, and physical concerns than age-matched control subjects.

  2. Caregivers would show higher BP and HR levels than controls. An association between psychological distress, health complaints, and cardiovascular activity was also hypothesized.

  3. Last, a longer caregiving duration was hypothesized to be associated with higher BP and HR and reported distress.

This is a pilot study, part of a longitudinal investigation of the health effects of caregiving and bereavement in the context of palliative care. This article focuses on caregiver adjustment prior to the death of a family member.

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