Distance Caregivers for advanced cancer patients have special needs

In 2012, will be an estimated 14 million people serve as distance caregivers family members across the country, in the entire region, even in the whole country.

"No longer families live just around the corner from each other," says Polly Mazanec, an assistant professor at the Frances Payne Bolton School of nursing and an advance practice Oncology nurse at University hospitals case Medical Center Seidman Cancer Center.

The distance is a challenge as members of the family work to get information about their loved ones and to participate in their cancer care. But it's also a challenge to the local carers, nurses, doctors and local family members who are in the short term to these external caregivers special needs must adapt. In hospitals across the country, such challenges distance caregivers be tagged "seagulls" and "Doves" references to family members who fly, make a mess and fly out.

Distance caregivers win in numbers, according to Mazanec, who is lead researcher of the study, "Distance Caregiving a parent with advanced cancer." In the Oncology Nursing Forum article, "lack of communication and control: experience of distance caregivers of patients," she reports on qualitative findings of the study.

Mazanec says what she and her fellow researchers found requires that a change in the way information is delivered to distance caregivers. Nurses, she says, a role in relieving some of the emotional stress experienced by distant relatives.

Most of the distance secondary caregivers are caregivers with local family members by providing information for the patient used and often by telephone, said Mazanec.

With dispersed usage information available to help these individuals, wanted to first Mazanec effort to understand what these caregivers and then developing an intervention in the loop of patient care.

The study, part of a larger look at distance caregiving, involved telephone interviews with health care providers for patients with Advanced Lung, stomach and gynecologic malignancies. Each interviewee 100 miles or more away from their family member lived and three open questions that were included and later transcribed.

Common themes were a lack of control and information, but what emerge outside these important concerns were the following:

--Distance caregivers struggle emotionally about the right time to visit or call their family members. Many carers have families with young children and possibly limited financial resources to travel.

--Uncertainty over what happened to their family members also involved caregivers happened.

--Although high trained caregivers were asked a lot and information online, they still wanted more information from the health professionals.

--Although parents of these carers were sick, they still wanted to protect their children through the withholding of information that sons and daughters wanted to know. Children also withheld the information to protect or reduce the stress of their sick parents.

--Caregivers felt it was important to stay connected.

Mazanec says that with new technologies available, that she wants a design program the distance gap is closed.

To collaborate on the article were: Barbara Daly, Professor Perkins Oliva in Oncology; Maryjo Prince Paul, Assistant professor, at the Frances Payne Bolton School of nursing; and Betty Rolling Ferrell, researcher at the city of hope National Medical Center in Duarte, Calif.

The study had funding from a National Research Service Award from the National Institute of Health.

Source: Case Western Reserve University