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Section 14
Negative Emotions in AIDS Caregivers

Question 14 | Test | Table of Contents

There has been some attempt to compare informal caregiving and distress of the caregivers of people with different chronic illnesses. Caregivers of people with dementia and cancer have been compared, as have caregivers of people with dementia and AIDS (Clipp & George, 1993; Turner & Catania, 1997). More studies have been called for to determine whether a model of nursing assistance to caregivers might be developed (Zeller, Swanson, & Cohen, 1993). The current study is the first we know of that describes caregivers of people with AIDS, ARD, and CA. Our purpose is to describe distressing emotions--specifically depressive mood, anxiety, and anger--and sleep problems in these three groups of caregivers.

Distressing emotions and sleep problems occurred among all caregivers, but there were important differences among the three groups. Notably, more of the caregivers of people with cancer were experiencing anxiety and anger, problems with staying asleep and restless sleep. Caregivers of people with AIDS were experiencing more depressive mood symptoms, loneliness, crying, and feeling life had been a failure. They also were experiencing restless sleep. Despite their older age and longer number of years of caregiving, fewer caregivers of people with age-related dementias were experiencing distressing emotions and sleep problems.

Some possible reasons for these findings may be related to the age of the care receivers with CA and AIDS: They were younger, and the age of death may have seemed more untimely. In the case of people with cancer and AIDS, caregiver anger may be related to this untimeliness and the seeming unjustness of the age of death. The younger age of AIDS and CA caregivers also may account for their sleep problems. Although the literature reports sleep problems in the elderly, younger caregivers and those at midlife may be experiencing sleep problems related to menstruation and perimenopause.

Higher levels of anxiety in AIDS and CA caregivers may be related to the intensity of caregiving in the months before death for people with AIDS and CA. With cancer and AIDS, caregiving may not be stretched over a long period and may occur only when death is near. Sleep problems in AIDS and CA caregivers also may be related to this intensity and may be related to waking often to provide care and pain medication. In the case of AIDS there also is stigma, prejudice, and insensitivity toward with people with AIDS, which might account for feelings of anger, loneliness and isolation, and depressive mood.

Overall, ARD caregivers experienced fewer distressing emotions than either HIV or CA caregivers. With ARD, caregiving occurs over many years, during which caregivers may have time to adjust emotionally to the situation. Others have reported this seeming adjustment in ARD caregivers as well (Rabins, Fitting, Eastham, & Zabors, 1990). Additionally, the fact that fewer ARD caregivers reported sleep problems may be due to the emotional adjustment that occurs over time and a lessening of distressing emotions experienced. Furthermore, death at an older age may seem more acceptable, expected, and normal, explaining the lessening distress felt by ARD caregivers. Finally, differences in who provides caregiving may account for differences in distress. ARD caregivers were mostly spouses, and some investigators have reported recently that spouses experience less distress than other relatives (Li, Seltzer, & Greenberg, 1997).
This study is limited by convenience sampling, the number of participants involved, and the settings of the study. Findings may not apply to participants and settings that differ widely. Nevertheless, the study provides new information by providing a description of three groups of caregivers who have not been discussed before in terms of their similarities and differences.

Clinical Implications
Due to the limitations of this study, clinical recommendations are made with caution. However, distressing emotions in caregivers have been reported repeatedly and require nursing assessment and treatment. Depressive mood has been reported with the most consistency and frequency. Anxiety and anger have been reported with less frequency, but have been recognized by most mental health professionals as often accompanying depressive mood.

Sleep problems in caregivers are reported with less frequency, but both intuitively and physiologically, there are compelling reasons that sleep problems occur. Caregiving requires constant and nighttime attention to physical care and pain management. The depressive mood, anxiety, and anger that accompany the illness and approaching death of a loved one have a dynamic synergy with sleep problems. Each exacerbates the other.

Assessment of caregivers must incorporate information such as age, gender, ethnicity, socioeconomic status, relationship to care receiver, and life-cycle phase of both caregiver and care receiver. All these factors may influence the caregiver's emotions and distress. In addition, prior social and psychiatric history and use of alcohol and nonprescribed drugs should be assessed. Those with prior psychiatric and drug-use histories are more likely to have extended effects from the stresses of caregiving and may experience a psychiatric disorder. Caregivers without a prior psychiatric history will more likely experience a transient and circumscribed period of intense anxiety, anger, and depressive mood.

A variety of therapies and assistive services is available for providing mental health nursing to informal caregivers. Depending on the caregiver's psychosocial, cultural, and economic situation, any and all of these therapies might be needed. Mental health nurses can be actively involved in treating depressive mood, anger, anxiety, and sleep problems. One approach is the use of cognitive-behavioral therapy, which may be especially useful in relieving the caregiver's distress. Techniques within this model include reframing, role reversal, clarifying the meaning of the caregiving situation, relaxation, distraction, biofeedback, and graded task management (Lovejoy & Matteis, 1997). Successful therapy is evidenced in the caregiver's ability to demonstrate self-promoting behaviors and constructive thought patterns.

Distressing emotions may be managed by the caregivers themselves using complementary/alternative methods such as meditation, relaxation exercises, and visual imaging. These techniques require the active involvement of caregivers in managing their own distress. Many mental health nurses are expert in these techniques and can teach them to caregivers or refer them to other experts. Included in this approach should be a program of regular physical exercise. Exercise improves sleeping and decreases stress. Along with regular exercise is the need for regular (scheduled) rest and sleep. For some people, sleep programs must be designed that will allow them to fall asleep and stay asleep (McEnany et al., 1996).

Expressive-supportive counseling may be an especially useful part of therapy. This counseling may be provided by the mental health nurse and/or by assisting caregivers to be involved in social support groups, spiritual and religious activities, and relaxation and recreational activities, as noted above. Special attention should be given to the benefits of expression of basic emotions such as fear, anger, anxiety, and sadness. Providing an avenue for emotional expression in mental health counseling or helping caregivers find additional avenues for expressing emotion in their relationships with family, friends, social groups, clergy, and religious groups may enhance both physical and mental health.

A final aspect of therapy may include the provision of instrumental support to caregivers. A lack of instrumental services may create situations that exacerbate anxiety, anger, depression, and lack of sleep. Caregivers may need economic assistance; help with housekeeping, shopping, and chores; transportation; and respite care. Caregivers may need education and skills training to provide physical and emotional care to the person with ARD, AIDS, or CA. Mental health nurses can provide for these needs through direct care, referral, advocacy, consultation, and case management services. A comprehensive approach to mental health therapy and treatment may best serve the needs of caregivers and help keep distressing emotions at bay. Comprehensive care may include psychotherapy, pharmacologic treatment, social and instrumental support, caregiver education and skills training, home care, and physical health care. All of these nursing interventions are congruent with the scope of practice of the mental health nurse.
- Flaskerud, Jacquelyn H.; Distressing Emotions in Female Caregivers of People With AIDS, Age-Related Dementias; Perspectives in Psychiatric Care; Oct-Dec2000; Vol. 36 Issue 4

Personal Reflection Exercise #7
The preceding section contained information about negative emotions in AIDS caregivers.  Write three case study examples regarding how you might use the content of this section in your practice.
Reviewed 2023

Peer-Reviewed Journal Article References:
Prati, G., & Pietrantoni, L. (2019). Bifactor and item response theory analyses of health care workers’ attitudes toward HIV-infected people.European Journal of Psychological Assessment, 35(2), 156–163.

Rooks-Peck, C. R., Adegbite, A. H., Wichser, M. E., Ramshaw, R., Mullins, M. M., Higa, D., Sipe, T. A., & The Prevention Research Synthesis Project, Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention. (2018). Mental health and retention in HIV care: A systematic review and meta-analysis. Health Psychology, 37(6), 574–585.

Sauceda, J. A., Lisha, N. E., Dilworth, S. E., Johnson, M. O., Christopoulos, K. A., Wood, T., Koester, K. A., Mathews, W. C., Moore, R. D., Napravnik, S., Mayer, K. H., Crane, H. M., Fredericksen, R. J., Mugavero, M. J., & Neilands, T. B. (2020). Measuring engagement in HIV care: Measurement invariance in three racial/ethnic patient groups. Health Psychology, 39(7), 622–631.

QUESTION 14
In Flaskerud’s study, why is it likely that caregivers of AIDS patients experienced more negative symptoms than caregivers of Alzheimer’s patients? To select and enter your answer go to Test.

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