Being a PWC's Caregiver: 
Stress and Satisfaction Assessments of CFIDS Caregivers

By Joseph R. Ferrari, PhD, Jennifer Braus and Leonard A. Jason, PhD

Originally published in The CFIDS Chronicle - Fall 1996

It is unlikely that many people who voluntarily care for others are motivated by monetary rewards, public recognition or high levels of prestige.¹ Instead, people who volunteer as caregivers do so because of a desire to serve others, to support their community and to engage in meaningful and satisfying activities.² People select organizations and activities that reflect their concerns and values.³ This paper will discuss a recent survey of caregivers to persons with CFIDS (PWCs). The result of this study may be important to caregivers who wish to establish optimal and appropriate levels of practical and emotional support.⁴

A series of self-report instruments was printed in the Spring 1995 issue of The CFIDS Chronicle. These instruments included a set of demographic items, the Caregiver Scale⁵ (14 items measuring both stress and satisfaction experiences from providing care, in this case to PWCs), the Life Satisfaction Scale⁶ (five items assessing a person's global life satisfaction and subjective well-being) and the Interaction with Disabled Persons Scale7 (20 items measuring a person's relative discomfort in social interactions, here with PWCs). Readers were asked to complete all items and return them by mail to the first author.

Ninety-six completed surveys were returned by 48 men and 48 women who identified themselves as caregivers to PWCs. The caregivers were middle-aged (avg. 46.8 years old), Caucasian (94.6%) and well-educated (60.6%). They reported they had not previously cared for other PWCs, met with their PWC nearly each day and, on average, had been caring for this PWC for over six years. The PWCs tended to be middle-aged (avg. 41.3 years old), Caucasian (94.6%) women (86.5%), had experienced fatigue for over seven years and had been diagnosed with CFIDS for 4.5 years.

There were no significant gender differences on the stress and satisfaction experiences as caregivers to PWCs; in fact, both men and women reported more satisfaction than stress. Moreover, the more life satisfaction caregivers reported, the less stress and the more satisfaction they experienced in caring for their PWC. Caregivers felt that social discomfort in working with the PWC was unrelated to stress or satisfaction as a caregiver.

In addition, caregivers reported that they were grateful not to be a PWC, admired the PWC's ability to cope with the illness and felt sad when the PWC was unable to do tasks he or she previously could perform. Caregivers also reported that they were frustrated on occasion by an inability to help their PWC, and that as caregivers they have become more knowledgeable about the problems of PWCs.

This study suggests that caring for a PWC can be a satisfying experience. The participants in this study seemed pleased with their roles as caregivers, despite the lengthy illness of the PWCs and the number of days per week the caregivers had contact with the PWCs. These findings are of added importance because in a recent survey on the service needs of PWCs, establishing a system of volunteer caregivers was one of the highest-rated needs.^8,9 It is possible a biased sample of caregivers returned their completed survey -- those individuals who were stressed and dissatisfied might have failed to return the instruments. Nevertheless, we thank those individuals who returned our survey. We will be conducting additional evaluations of the data. It seems that being a caregiver to a PWC may reflect love and care to the needing recipient.

This study was an Independent Study project for the second author. Portions of the results were presented at the 1996 Midwestern Psychological Association annual meeting (Chicago IL). We thank Vicki Carpman and readers of The CFIDS Chronicle for their time and assistance in this project. Correspondence concerning the "Caregiver's Scale" should be sent to the first author at the Dept. of Psychology, DePaul University, 2219 N Kenmore Ave, Chicago IL 60614.

References

1. Chambre SM: Being needful: Family, love and prayer among AIDS volunteers. Res Sociol Health Care 1995;12:113-139.
2. Chambre SM: Kindling points of light: Volunteering as public policy. Nonprofit and Voluntary Sector Quarterly 1989;18:249-268.
3. Sundeen RA: Differences in personal goals and attitudes among volunteers. Nonprofit and Voluntary Sector Quarterly 1991;21:271-292.
4. Friedberg F: Coping with Chronic Fatigue Syndrome: Nine Things You Can Do. Los Angeles: New Harbinger, 1995.
5. Ferrari JR, Pantano J, McCown W: Experiencing satisfaction and stress as an AIDS care provider: "The (AIDS) caregivers" scale. Eval and Health Professions 1993;16:295-310.
6. Diener E, Emmons RA, Larsen RJ, Griffin S: The satisfaction with life scale. J Personality Assess 1985;49:71-75.
7. Gething L: The interaction with disabled persons scale. J Soc Behav and Personality 1994;9:23-42.
8. Jason LA, Ferrari JR, Taylor RR, Slavich SP, Stenzel CL: A national assessment of the housing, service and support needs for persons with chronic fatigue syndrome. Eval and Health Professions (in press).
9. Jason LA, Slavich SP, Taylor RR, Ferrari JR, Stenzel CL: Toward an understanding of service and housing needs of people with CFIDS. CFIDS Chron 1994;Summer:10-11.