Information Needs of Breast Cancer Patients: Theory-Generating Meta-Synthesis

Abstract

Background Breast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is urgently needed to improve the quality of health care. However, previous studies related to the information needs of breast cancer patients have focused on different perspectives and have only contributed to individual results. A systematic review and synthesis of breast cancer patients’ information needs is critical. Objective This paper aims to systematically identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients. Methods Web of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019, to collect relevant studies. A Google Scholar search, interpersonal network recommendations, and reference chaining were also conducted. Eligible studies included qualitative or mixed-methods studies focusing on the information needs (across the cancer continuum) of breast cancer patients or their social networks. Subsequently, a Critical Appraisals Skills Programme checklist was used to assess the quality of included research. The results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach. Results Three themes, 19 categories, and 55 concepts emerged: (1) incentives (physical abnormality, inquiry from others, subjective norm, and problems during appointments); (2) types of information needs (prevention, etiology, diagnosis, clinical manifestation, treatment, prognosis, impact and resumption of normal life, scientific research, and social assistance); (3) moderating variables (attitudes, health literacy, demographic characteristics, disease status, as well as political and cultural environment). The studies revealed that the information needs of breast cancer patients were triggered by different incentives. Subsequently, the patients sought a variety of information among different stages of the cancer journey. Five types of variables were also found to moderate the formation of information needs. Conclusions This study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals.

Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data

“…Our findings regarding women’s information needs and their experiences related to missing relevant treatment information and information overload are consistent with the existing literature [ 29 - 31 ]. There is a need for the development and assessment of more interventions that help information seekers manage health information overload [ 3 ] and a need to develop information filters to help information seekers identify relevant web-based health information [ 5 ].…”

“…For example, the app makes it possible to better understand whether certain personal user characteristics, such as age, ethnic background, having children, marital status, and literacy level, influence one’s preference for certain speakers with similar characteristics. In the future, it may also be possible to add other important characteristics that influence information needs [ 29 ], such as preexisting knowledge of the illness and preference for more basic or advanced illness information. A recently developed narrative taxonomy defines three different kinds of narratives: process, experience, and outcome narratives [ 33 ].…”

“…In the future, it may also be possible to add other important characteristics that influence information needs [29], such as preexisting knowledge of the illness and preference for more basic or advanced illness information. A recently developed narrative taxonomy defines three different kinds of narratives: process, experience, and outcome narratives [33].…”

Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data (Preprint)

“…Our findings regarding women's information needs and their experiences related to missing relevant treatment information and information overload are consistent with the existing literature [29][30][31]. There is a need for the development and assessment of more interventions that help information seekers manage health information overload [3] and a need to develop information filters to help information seekers identify relevant web-based health information [5].…”

Husbands’ Knowledge of Breast Cancer and Their Wives’ Attitudes and Practices Related to Breast Cancer Screening in Saudi Arabia: Cross-sectional Online Survey

“…However, the magnitude of the influence that husbands’ knowledge of breast cancer has on their wives’ screening behavior was unclear in earlier studies. Our findings have strengths that might be relevant in addressing the information needs of breast cancer patients [ 26 ] or implementing risk-stratified breast cancer prevention strategies [ 27 ].…”