Clinical Support

Lightning Talk: Research Abstract

Informational Needs of Individuals Who Experienced a Terminal Cancer Diagnosis of a Loved One: An Exploratory Research Study

Monday, May 6
3:00 PM - 3:05 PM
Room: Columbus KL (East Tower, Ballroom/Gold Level)

Objectives : This exploratory research investigated the information needs of family of terminal cancer patients through quantitative methods. The definition of "terminal cancer" for this study was a prognosis that included a predicted lifespan (e.g. 5 months, 2 years, etc.).


Methods : This study was approved by the Human Research Ethics Board at the State University of New York at New Paltz. An online survey was designed using Qualtrics that consisted of 40 questions with a combination of Likert-scale and open-ended questions. It was administered to those who dealt with a terminal cancer patient. The survey explored the types of information resources that were used, anticipated information uses, obstacles in obtaining information, and fluctuation of information needs. The survey was distributed to a university listserv, library organization listservs and message boards, and local medical facilities with an average of 63 responses per question. Participation was anonymous and no identifying information was collected. Survey responses were collected between August 1, 2018 – November 30, 2018.


Results : Most respondents were parents (31%) and children (24%), with 45% representing other family members like spouses/partners, siblings, grandparents or grandchildren. The data revealed that respondents always used doctors (41%), family (36%), and nurses (32%) as their main information resources followed by often used resources like medical websites (45%), cancer organization websites (35%), and Google (33%). The least used resources were phonebooks (90%), Twitter (89%), Snapchat (89%), and Instagram (88%). The data suggested that respondents used the information in order to better understand the disease (32%), cope with illness (26%), communicate with physicians (23%), and to make medical decisions (17%).


Conclusions : Results suggest that family members of terminal cancer patients have vast and diverse information needs that may vary along the cancer journey. The resources frequently used among this population are similar to those used by cancer patients, such as physicians, other health-care professionals, and internet resources. Family members have information needs that pertain to themselves and also the cancer patient. As the results indicate, they use the information for their own understanding about the disease and treatments and to seek clarification from the physicians. Family members also use the information on behalf of the cancer patient since they are often their advocates and responsible for many of the medical decisions.

Megan Coder

Associate Librarian
State University of New York at New Paltz
New Paltz, New York

Megan Coder, MLIS, is an Associate Librarian at the State University of New York at New Paltz where she has been employed since 2005. She has held positions in reference, instruction, and technical services. This research project materialized from her experience with her father's terminal cancer diagnosis. Her other professional interests include cataloging, metadata, and sustainability.

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