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Qualitative Assessment of Unmet Information Management Needs of Informal Cancer Caregivers: Four Themes to Inform Oncology Practice. JCO Clin Cancer Inform 2020 Jun;4:521-528



Pubmed ID




Scopus ID

2-s2.0-85086523444   5 Citations


PURPOSE: Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era.

METHODS: This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes.

RESULTS: Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8%, were predominantly women; 10 of 13 (76.9%) were educated, 10 of 13 (76.9%) had graduated from college; and of modest means, six of 13 (46.2%) had household incomes < $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self-care.

CONCLUSION: This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just-in-time information availability or dedicated caregiver check-ins may provide relief within the stress of caregiving.

Author List

Crotty BH, Asan O, Holt J, Tyszka J, Erickson J, Stolley M, Pezzin LE, Nattinger AB


Bradley H. Crotty MD Associate Professor in the Medicine department at Medical College of Wisconsin
Ann B. Nattinger MD, MPH Associate Provost, Professor in the Medicine department at Medical College of Wisconsin
Liliana Pezzin PhD, JD Professor in the Institute for Health and Equity department at Medical College of Wisconsin
Melinda Stolley PhD Center Associate Director, Professor in the Medicine department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Information Management
Medical Oncology
Qualitative Research