The number of caregivers providing instrumental and emotional support to an ill loved one who is geographically distant is expected to reach approximately 14 million by 2012. A study of the new and complex phenomenon of distance caregiving in the advanced cancer population revealed the stressors that burden distance caregivers, and suggested ways in which nurses might be able to help these persons.
In interviewing 14 adult children who were the distance caregivers of parents with advanced lung, gastrointestinal, and gynecologic malignancies, a nursing team found that the participants were quick to report the negative aspects of distance—largely feeling guilty, helpless, and stressed because they lived at least 100 miles away from the patient. The majority of participants were secondary caregivers who had local family members relaying patient information to them secondhand.
Polly Mazanec, PhD, ACNP, AOCN, and colleagues reported that the caregivers:
- struggled emotionally about when to visit or call the patient
- felt concerned when they were uncertain what was happening with the patient
- wanted more information from the healthcare professionals managing the patient
- withheld information from the patient to protect the patient or reduce the patient’s stress; the patient often withheld information from the caregiver for the same reasons (Oncol Nurs Forum. 2011;38:307-313; http://ons.metapress.com/content/lq33u02r116t47h7/fulltext.pdf).
All interviewees wanted more information on the disease, treatments, and what their parent was actually experiencing. The investigators reported that as the healthcare team members most likely to be able to lessen distance caregiver distress, nurses may be able to provide information about the disease process, treatment experience, and side effects by means of telephone or computer. In addition, written tips and information on home care, meal delivery, housekeeping, and other resources in the patient’s geographic community could equip the distance caregivers with tools for supporting the patient.
In a statement summarizing the findings, Mazanec—an assistant professor at the Frances Payne Bolton School of Nursing at Case Western Reserve University and an advance practice oncology nurse at University Hospitals Case Medical Center’s Seidman Cancer Center, both in Cleveland, Ohio—noted that what she and her fellow researchers found requires a change in the way information is delivered to distance caregivers. With new technologies available, Mazanec hopes to design a program that closes the distance gap.
According to the researchers, another possible solution is to develop Web-accessible virtual tours that would allow the distance caregivers to see where their loved one is receiving treatment.
“More technologically complex interventions, such as the computer-based technology of webcams, might provide the opportunity for distance caregivers to be present at physician visits, possibly improving communication and decreasing fears of not knowing,” observed the authors.