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World J Clin Oncol. Apr 10, 2016; 7(2): 214-219
Published online Apr 10, 2016. doi: 10.5306/wjco.v7.i2.214
Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research
Sara L Douglas, Polly Mazanec, Amy Lipson, Mary Leuchtag
Sara L Douglas, Polly Mazanec, Amy Lipson, Mary Leuchtag, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH 44106-4904, United States
Author contributions: Douglas SL analyzed the data; Douglas SL and Mazanec P wrote the paper and contributed equally to this work; Douglas SL, Mazanec P, Lipson A and Leuchtag M designed the research; Lipson A and Leuchtag M performed the research.
Conflict-of-interest statement: Sara L Douglas, Polly Mazanec, Amy Lipson and Mary Leuchtag declare they have no conflicting interests (including but not limited too commercial, personal, political, intellectual or religious interests) related to the work submitted for publication.
Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Correspondence to: Sara L Douglas, PhD, RN, Professor and Assistant Dean for Research, Frances Payne Bolton School of Nursing, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH 44106-4904, United States. sld4@case.edu
Telephone: +1-216-3680702 Fax: +1-216-3685989
Received: May 29, 2015
Peer-review started: May 21, 2015
First decision: December 28, 2015
Revised: January 28, 2016
Accepted: February 16, 2016
Article in press: February 17, 2016
Published online: April 10, 2016
Processing time: 314 Days and 6.9 Hours
Abstract

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient’s condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members’ well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

Keywords: Distance caregivers; Caregiving; Cancer caregivers; Long distance caregivers; Caregivers

Core tip: Distance caregivers (DCGs) are an important subset of family caregivers who are understudied and receive little attention from clinical providers. The limited research has identified that this growing population of caregivers experience anxiety, mood disturbances and distress, yet few, if any interventions for them exist. There is a need for more research to identify the benefits and burdens of DCGs and the impact of this burden on the caregivers, patient and family. Interventions providing support and education for this subset of caregivers must be designed and tested. Advanced technology offers unique strategies to deliver these interventions.