Dataset Information

Understanding cancer survivors' information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study.

ABSTRACT:

Objective

The research examined complementary and alternative medicine (CAM) information-seeking behaviors and preferences from short- to long-term cancer survival, including goals, motivations, and information sources.

Methods

A mixed-methods approach was used with cancer survivors from the "Assessment of Patients' Experience with Cancer Care" 2004 cohort. Data collection included a mail survey and phone interviews using the critical incident technique (CIT).

Results

Seventy survivors from the 2004 study responded to the survey, and eight participated in the CIT interviews. Quantitative results showed that CAM usage did not change significantly between 2004 and 2015. The following themes emerged from the CIT: families' and friends' provision of the initial introduction to a CAM, use of CAM to manage the emotional and psychological impact of cancer, utilization of trained CAM practitioners, and online resources as a prominent source for CAM information. The majority of participants expressed an interest in an online information-sharing portal for CAM.

Conclusion

Patients continue to use CAM well into long-term cancer survivorship. Finding trustworthy sources for information on CAM presents many challenges such as reliability of source, conflicting information on efficacy, and unknown interactions with conventional medications. Study participants expressed interest in an online portal to meet these needs through patient testimonials and linkage of claims to the scientific literature. Such a portal could also aid medical librarians and clinicians in locating and evaluating CAM information on behalf of patients.

SUBMITTER: Scarton LA

PROVIDER: S-EPMC5764598 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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Publications

Understanding cancer survivors' information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study.

Scarton Lou Ann LA Del Fiol Guilherme G Oakley-Girvan Ingrid I Gibson Bryan B Logan Robert R Workman T Elizabeth TE

Journal of the Medical Library Association : JMLA 20180102 1

<h4>Objective</h4>The research examined complementary and alternative medicine (CAM) information-seeking behaviors and preferences from short- to long-term cancer survival, including goals, motivations, and information sources.<h4>Methods</h4>A mixed-methods approach was used with cancer survivors from the "Assessment of Patients' Experience with Cancer Care" 2004 cohort. Data collection included a mail survey and phone interviews using the critical incident technique (CIT).<h4>Results</h4>Seven ...[more]

PMID: 29339938

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Project description:BackgroundMany parents choose support such as Complementary and Alternative Medicine (CAM) for themselves and their children who have cancer. The aim of this paper is to describe, how parents who have children with cancer communicated with conventional health care providers about CAM, and what types and sources of information they would like to receive about CAM when the child was ill.MethodThis focused ethnography draws from in-depth, semi-structured interviews conducted with 22 families in Norway with 24 adult participants (two couples), including two individuals who had had cancer themselves. Four domains were explored in the data analysis: the use of CAM, advice from laypeople about CAM, communication with conventional health care providers about CAM, and parents' information needs about CAM.ResultsMany of the participants had personal experiences with CAM before the child received the cancer diagnosis. The health care providers did not raise the question about CAM in the consultations. However, when the parents raised the question, they were mostly met in a positive way. The participants did not receive any information about CAM at the hospital, which they would have appreciated. Instead, they received recommendations about CAM from laypersons, which were mostly rejected, as the advice was not in line with their health values/philosophy.ConclusionThe reason participants did not disclose CAM use is that physicians did not ask them about it. However, positive communication about conventional treatment facilitated fruitful conversations about CAM. The participants wanted information about CAM from authoritative sources, primary from health care providers at the hospital and the Children's Cancer Society. They demand information about risks and benefits when using CAM as well as whether CAM can improve the immune system, fight the cancer, and improve the quality of life of the family. An evidence-based decision aid is warranted to enable health care providers and parents of children with cancer to make well-informed decisions about CAM.

Project description:BACKGROUND:Current medical professions involve an extensive knowledge of the latest validated scientific data to implement disease diagnosis, therapeutic strategies, and patient care. Although clinicians can refer to a growing number and type of information sources to keep current with new scientific achievements, there are still various concerns about medical information validity, quality, and applicability into clinical practice. Novel strategies are required to identify physicians' real-life needs with the final aim to improve modern medical information delivery. OBJECTIVE:Our research used an innovative tool to collect real-time physician queries in order to investigate information needs and seeking behavior of Italian neurologists treating patients with multiple sclerosis (MS) and migraine. METHODS:The study was designed as an exploratory mixed methods (ie, qualitative and quantitative) study involving 15 consecutive days of observation. A total of 50 neurologists (n=25 MS and n=25 migraine specialists) were recruited. Data were collected using an instant messaging mobile app designed for this research. At each information-seeking event, moderators triggered a computer-assisted personal interview including both semistructured interview and close-ended questions. Interactions and physician queries collected using the mobile app were coded into emerging themes by content analysis. RESULTS:Neurologist queries were relevant to the following major themes: therapy management (36/50, 71%) and drug-related information (34/50, 67%), followed by diagnostic strategies and procedures (21/50, 42%). Quantitative analysis indicated online resources were preferentially used by clinicians (48/50, 96%) compared with offline sources (24/50, 47%). A multichannel approach, in which both online and offline sources were consulted to meet the same need, was adopted in 33% (65/198) of information-seeking events. Neurologists more likely retrieved information from online relative to offline channels (F=1.7; P=.01). MS specialists were 53% more likely to engage in one information-seeking event compared with migraine neurologists (risk ratio 1.54; 95% CI 1.16-2.05). MS specialists tended to be more interested in patient-related content than migraine clinicians (28% [7/25] vs 10% [2/25], P=.06), who conversely more likely sought information concerning therapy management (85% [21/25] vs 60% [15/25], P=.05). Compared with MS clinicians, migraine specialists had a harder time finding the required information, either looking at online or offline channels (F=12.5; P=.01) and less frequently used offline channels (30% [8/25] vs 60% [15/25] of information-seeking events, P=.02). When multiple sources needed to be consulted to retrieve an information item, a reduced satisfaction rate was observed both among migraine and MS specialists (single source vs multiple sources P=.003). CONCLUSIONS:This study provides a detailed description of real-life seeking behavior, educational needs, and information sources adopted by Italian MS and migraine neurologists. Neurologist information needs and seeking behavior reflect the specific characteristics of the specialty area in which they operate. These findings suggest identification of time- and context-specific needs of clinicians is required to design an effective medical information strategy.

Dataset Information

Understanding cancer survivors' information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study.

Objective

Methods

Results

Conclusion

Publications

Understanding cancer survivors' information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study.

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