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Day 6: Caregiving from Afar

November 6, 2011

By Sean Coffey

A study earlier this year focused on the issues of caregiving from a distance for adult children whose parents were diagnosed with cancer. In an interview with one of the authors (scroll down to May 2011), Polly Mazane, PhD, ACNP, AOCN, she explained that there is a joke about adult children caregivers and their nickname of “seagulls” because they fly into town, make a mess out of everything, and then fly out. While she was joking, she also touched on many of the difficult issues for adult children caregivers who live in another city or state but are now confronting health or long-term care issues for their parents.

The authors of the paper explain that there will be an estimated 14 million long-distance caregivers by 2012, and that they can present unique challenges as compared to caregivers who live in the same area. They interviewed 14 caregivers (whose parents had been diagnosed with cancer), and the first theme from the interviews was that of benefits and burdens. The burdens included the fact that it could be difficult (i.e. a long plane ride) to get to parents if they were needed. Caregivers felt that the benefits were that the situation may have brought them closer together, and one caregiver felt that not being in the same town made her mother’s cancer diagnosis easier because she wasn’t facing it every single day.

Other themes included uncertainty about how a parent was doing with the treatment, and uncertainty about the disease. Many caregivers felt they didn’t have enough information and would seek out more information, including from the internet. The authors explain: “All participants wanted more information. They wanted to know more about the disease, treatments, and what their parents actually were experiencing.”

Several caregivers talked about parents who would share incomplete information as a means to “protect” their adult children, though it appeared adult children would also do the same and withhold bad information while their parent was going through treatment.

The authors conclude by explaining that all of the caregivers stressed the importance of communication- not just between family members, but the distance caregivers also wanted to communicate with the nurses and doctors who were handling their parent’s medical care.

Long-distance caregivers may have siblings in the same town as the ill parent and who provide the daily “hands-on” care. We will discus caregiving with siblings on another posting later their month because there are some “rules for the road” that can be helpful when there are multiple siblings caring for a parent.

FCA’s “Hand-Book for Long-Distance Caregivers” provides a good overview of things to consider as a long-distance caregiver. The handbook can serve as a guide for determine what types of help you and your loved one may need and how to obtain those services.

Note: The study referenced in this posting is from the May 2011 Issue (Vol. 38, No. 3) of Oncology Nursing Forum: “Lack of Communication and Control: Experiences of Distance Caregivers of Parents With Advanced Cancer”
Available here: http://ons.metapress.com/content/lq33u02r116t47h7/fulltext.pdf

The interview is on the Oncology Nursing Society website (scroll down to May 2011):
Available here: http://www.ons.org/Publications/ONF/Features/Podcast