Abstract
Background This qualitative study examined the experiences and perspectives of caregivers of homebound elderly patients.
Methods We performed in-depth, semistructured interviews with 22 caregivers (average age 59 years) of homebound elderly patients and analyzed them to determine major themes. The homebound patients were part of a house call program of a US academic medical center in Baltimore, Maryland.
Results Caregiver relationships in our study were diverse: 41% were spouses or children, and 41% were unrelated to the homebound patient; 36% were male. We identified 3 themes: (1) caregiving has both positive and negative aspects, (2) caregiver motivation is heterogeneous, and (3) caregivers sometimes undergo transformation as a result of their caregiving experience.
Conclusion Caregiver experience is varied. Interviewees reported a variety of motivations for becoming caregivers and both positive and negative aspects of the experience. Caregivers in this study were diverse with respect to sex and relationship to the patient, suggesting the pool of potential caregivers may be larger than previously thought.
When thinking about long-term home care for the chronically ill elderly, many people automatically imagine a spouse or child as the primary caregiver. In our study, however, 41% of the caregivers interviewed were unrelated to the person receiving the care. In addition to this diversity, we found that motivations for providing care varied among participants; that their different experiences ranged from positive to negative, or a little of both; and that a few caregivers felt their attitudes changed for the better over the course of giving assistance.
We must plan for an aging population
In 2000, 35 million people, or 8% of the US population, were 65 years of age or older. In 2040, there will be 80 million seniors, or 20.4% of the US population.1 The National Long Term Care Survey found that in 1999, 3.9 million Medicare enrollees with a chronic disability were receiving care in their homes. A significant portion of caregiving burden is borne by patients’ relatives and friends; more than 90% of homebound patients were receiving some degree of informal, unpaid assistance.2 As the population ages, more caregivers will be needed to tend chronically ill elders, and most will be informal caregivers.
The reason for our study
Research over the past few decades has found that the burden is significant for those caring for older adults.3-6 Daily challenges and stressors increase the burden caregivers feel in their role.7,8 More recent work has also examined interventions to alleviate caregiver burden.9 Studies of caregivers—published predominately in the social science and nursing literature—have seldom reported on the positive aspects of the role.10-12 Only 1 study in the US medical literature, a national survey, noted positive aspects of the caregiving role.13
Through in-depth interviews, we sought to learn more fully about the experiences of caregivers of chronically ill homebound elderly people.
Methods
Design, setting, study population
This qualitative study of caregivers, a focused ethnography,14 was part of a larger project that interviewed the patients and their doctors. We conducted the study through the Johns Hopkins Geriatrics Center Elder Housecall Program (EHP) from 1997 to 2001. Since 1979, EHP has provided medical and nursing care to generally frail, homebound elderly (mean age 77), predominantly white (82%) and female (69%) patients in a largely blue-collar community in east Baltimore. Annual mortality for patients is 25%.15 We selected a qualitative approach because we wanted to learn more about the experiences and perspectives of the caregivers.
Sampling
The parent study used a purposive and probabilistic sampling strategy to select patients, as described elsewhere.16,17 We found subjects for our caregiver study through the patients, who identified the individuals who assist them. The range of caregiver responsibilities included, but was not limited to, coordinating services, managing medical and financial affairs, and directing such activities as bathing, dressing, and meal preparation. All caregivers we invited to participate did so.
Measurements
We conducted in-depth, semistructured interviews lasting approximately 1 hour. We also collected demographic information. As a starting point for each interview, we used the following brief guide:
- What has your experience as a caregiver for the patient been like?
- Do you recall any particular examples of rewarding aspects of the role?
- Do you recall any particular examples of difficult aspects of the role?
- Are there any particular challenges or important issues in your relationship with the patient that you wish to share?
An investigator trained in qualitative research (JC) asked additional questions, as needed, to further explore caregiver responses. We gave interviewees considerable latitude in commenting on points or topics they considered relevant.