Information seeking is a cornerstone of patient activation in chronic disease self-management. To... more Information seeking is a cornerstone of patient activation in chronic disease self-management. To date, there are few brief and literacy-sensitive tools to measure intrinsic barriers of health information seeking. The Health Information National Trends Survey includes four items from the Information Seeking Experiences scale to measure frustration, effort, concern, and comprehension of information sought during a recent medical/health information search. Limited evidence exists for its construct validity and use in primary data collection in chronic disease. This measurement study examines the psychometric properties of the scale. Qualtrics Panelists with at least one chronic disease (N = 684) participated in an online survey. The average score was M = 12.85 (SD = 3.97), indicating a moderate degree of health information seeking challenges. Confirmatory factor analysis of data collected using this scale supported unidimensionality (RMSEA = .03; CFI/TLI = .99/.99). There was adequate scale (ω = .83) and item (value = .98) reliabilities. Rasch analyses showed optimal measurement error and response predictability with item-fit (values = .80–1.20). Response option “agree” was less likely to be selected than any other response option, although not posing a threat to scale reliability. Results demonstrate that this brief scale has sufficient measurement properties for its use as a measure of intrinsic health information seeking barriers among patients with chronic disease.
The purpose of this pilot study was to determine if a cancer research study website increased com... more The purpose of this pilot study was to determine if a cancer research study website increased comprehension among patients and caregivers and if website evaluations differed across patient and caregiver groups. Participants (N = 200) were cancer patients and caregivers living in the USA. Comprehension was determined by the number of correct responses to a series of questions about key characteristics of cancer research studies that are frequently unknown or misinterpreted by patients and/or caregivers. Quantitative and qualitative analyses were conducted to determine participant evaluations across four domains: perceived website credibility, perceived website attractiveness, perceived information effectiveness, and perceived information clarity. Patients and caregivers perceived the website as highly credible and attractive and the information as both easy to understand and moderately effective in helping them make decisions about CCTs. Qualitative feedback underscores the importance of testimonials to website credibility. However, the range in the number of correct responses of certain items across participants coupled with discrepancies in comprehension between patients and caregivers suggests the need for stronger mechanisms evaluating knowledge outcomes.
Background: Although research participants are generally interested in receiving results from stu... more Background: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants.
Guided by Communicated Narrative Sense-making Theory (CNSM), the current study investigated menta... more Guided by Communicated Narrative Sense-making Theory (CNSM), the current study investigated mental illness (MI) narratives told within families and the lessons younger members learned from these stories. Individual, semi-structured interviews with young adults (N = 24) revealed that family members, mainly parents, share stories about the MIs of individual family members and narratives reflected themes of struggle and caution. Participants reported learning important lessons from these MI narratives (i.e., MI awareness, importance of understanding MI). Findings illuminate the ways family narratives about MI teach younger members lessons and expectations for managing MI despite some- times reinforcing MI stigma. Limitations, future directions, and implications for narrative interventions are also discussed.
Introduction. There is a dearth of literature providing guidance on how to effectively communicat... more Introduction. There is a dearth of literature providing guidance on how to effectively communicate about clinical research (CR). Methods. Using the transactional model of communication, a content analysis of the investigator (n = 62) and participant (n = 18) Web sites of institutions funded through the National Institutes of Health Clinical and Translational Science Award (CTSA) was conducted to identify their strategies (e.g., messages) for communicating about CR participation. Results. CTSAs targeted investigators with CR participation content across the main Web sites, although most CTSAs (n = 55; 88.7%) also included CR participation content for participants. In total, 18 CTSAs (29%) hosted participant Web sites. Participant sites included 13 message types about CR participation (e.g., registry enrollment) and 5 additional channels (e.g., email, phone number) to communicate about CR. However, many CTSA participant Web sites excluded information explaining the CR process and offered CR content exclusively in English. Conclusion. CTSAs should identify their target audience and design strategies (e.g., messages, channels) accordingly.
Introduction: Although registries can rapidly identify clinical study participants, it is unknown... more Introduction: Although registries can rapidly identify clinical study participants, it is unknown which follow up methods for recruiting are most effective. We examined the efficacy of three communication strategies for recruiting and enrolling patients who were identified via a contact registry (i.e., registry linked to a consent to re-contact program) into a clinical study. Methods: Patients who met the study criteria were identified via the contact registry and targeted for recruitment. In condition 1, patients established in the university hepatology specialty clinics were contacted one time via phone call by the study coordinator and asked to participate (C1). In condition 2, non-established specialty clinic patients were mailed an IRB-approved letter with study information and instructions for calling the study coordinator to participate (C2). Condition 2A included patients who called within two weeks of receiving the letter (C2A); condition 2B included patients who did not call after receiving the letter but were subsequently contacted via phone call. Results: A registry identified 1060 patients, of which 661 were eligible and targeted for recruiting. All 37 patients were reached in C1 and 17 (45.9%) were recruited. Nineteen of the 624 patients in C2A were reached and 10 were recruited whereas 120 of the 605 patients in C2B were reached and 53 (8.7%) were recruited. Seventy patients enrolled with C2B being the most effective (total, cost) recruitment strategy (n = 50) (p < .001). Conclusion: The efficacy of enrolling patients identified via a contact registry into clinical trials varies based on the communication strategies used for recruiting.
Couples who cohabit and then become engaged often participate in nontraditional living arrangemen... more Couples who cohabit and then become engaged often participate in nontraditional living arrangements and traditional marriage proposals. Because understandings of tradition and nontradition are constituted in discourse, we employed relational dialectics theory to examine the interplay of competing discourses in the talk of married participants who cohabited before engagement. Through retrospective interviews, we investigated the discursive struggles in participants’ talk across three contexts: pre-engagement cohabitation, the marriage proposal ritual, and the (re)telling of the proposal story to friends and family. Analysis of participant interviews illustrated three discursive struggles: (a) pragmatism and risk in cohabitation, (b) romance and partnership in the proposal ritual, and (c) privacy and revealment in the proposal ritual and (re)telling. We discuss how tradition and nontradition interplayed to redefine the engagement tradition, create new discursive meaning, and constitute couples’ shared identities.
Information seeking is a cornerstone of patient activation in chronic disease self-management. To... more Information seeking is a cornerstone of patient activation in chronic disease self-management. To date, there are few brief and literacy-sensitive tools to measure intrinsic barriers of health information seeking. The Health Information National Trends Survey includes four items from the Information Seeking Experiences scale to measure frustration, effort, concern, and comprehension of information sought during a recent medical/health information search. Limited evidence exists for its construct validity and use in primary data collection in chronic disease. This measurement study examines the psychometric properties of the scale. Qualtrics Panelists with at least one chronic disease (N = 684) participated in an online survey. The average score was M = 12.85 (SD = 3.97), indicating a moderate degree of health information seeking challenges. Confirmatory factor analysis of data collected using this scale supported unidimensionality (RMSEA = .03; CFI/TLI = .99/.99). There was adequate scale (ω = .83) and item (value = .98) reliabilities. Rasch analyses showed optimal measurement error and response predictability with item-fit (values = .80–1.20). Response option “agree” was less likely to be selected than any other response option, although not posing a threat to scale reliability. Results demonstrate that this brief scale has sufficient measurement properties for its use as a measure of intrinsic health information seeking barriers among patients with chronic disease.
The purpose of this pilot study was to determine if a cancer research study website increased com... more The purpose of this pilot study was to determine if a cancer research study website increased comprehension among patients and caregivers and if website evaluations differed across patient and caregiver groups. Participants (N = 200) were cancer patients and caregivers living in the USA. Comprehension was determined by the number of correct responses to a series of questions about key characteristics of cancer research studies that are frequently unknown or misinterpreted by patients and/or caregivers. Quantitative and qualitative analyses were conducted to determine participant evaluations across four domains: perceived website credibility, perceived website attractiveness, perceived information effectiveness, and perceived information clarity. Patients and caregivers perceived the website as highly credible and attractive and the information as both easy to understand and moderately effective in helping them make decisions about CCTs. Qualitative feedback underscores the importance of testimonials to website credibility. However, the range in the number of correct responses of certain items across participants coupled with discrepancies in comprehension between patients and caregivers suggests the need for stronger mechanisms evaluating knowledge outcomes.
Background: Although research participants are generally interested in receiving results from stu... more Background: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants.
Guided by Communicated Narrative Sense-making Theory (CNSM), the current study investigated menta... more Guided by Communicated Narrative Sense-making Theory (CNSM), the current study investigated mental illness (MI) narratives told within families and the lessons younger members learned from these stories. Individual, semi-structured interviews with young adults (N = 24) revealed that family members, mainly parents, share stories about the MIs of individual family members and narratives reflected themes of struggle and caution. Participants reported learning important lessons from these MI narratives (i.e., MI awareness, importance of understanding MI). Findings illuminate the ways family narratives about MI teach younger members lessons and expectations for managing MI despite some- times reinforcing MI stigma. Limitations, future directions, and implications for narrative interventions are also discussed.
Introduction. There is a dearth of literature providing guidance on how to effectively communicat... more Introduction. There is a dearth of literature providing guidance on how to effectively communicate about clinical research (CR). Methods. Using the transactional model of communication, a content analysis of the investigator (n = 62) and participant (n = 18) Web sites of institutions funded through the National Institutes of Health Clinical and Translational Science Award (CTSA) was conducted to identify their strategies (e.g., messages) for communicating about CR participation. Results. CTSAs targeted investigators with CR participation content across the main Web sites, although most CTSAs (n = 55; 88.7%) also included CR participation content for participants. In total, 18 CTSAs (29%) hosted participant Web sites. Participant sites included 13 message types about CR participation (e.g., registry enrollment) and 5 additional channels (e.g., email, phone number) to communicate about CR. However, many CTSA participant Web sites excluded information explaining the CR process and offered CR content exclusively in English. Conclusion. CTSAs should identify their target audience and design strategies (e.g., messages, channels) accordingly.
Introduction: Although registries can rapidly identify clinical study participants, it is unknown... more Introduction: Although registries can rapidly identify clinical study participants, it is unknown which follow up methods for recruiting are most effective. We examined the efficacy of three communication strategies for recruiting and enrolling patients who were identified via a contact registry (i.e., registry linked to a consent to re-contact program) into a clinical study. Methods: Patients who met the study criteria were identified via the contact registry and targeted for recruitment. In condition 1, patients established in the university hepatology specialty clinics were contacted one time via phone call by the study coordinator and asked to participate (C1). In condition 2, non-established specialty clinic patients were mailed an IRB-approved letter with study information and instructions for calling the study coordinator to participate (C2). Condition 2A included patients who called within two weeks of receiving the letter (C2A); condition 2B included patients who did not call after receiving the letter but were subsequently contacted via phone call. Results: A registry identified 1060 patients, of which 661 were eligible and targeted for recruiting. All 37 patients were reached in C1 and 17 (45.9%) were recruited. Nineteen of the 624 patients in C2A were reached and 10 were recruited whereas 120 of the 605 patients in C2B were reached and 53 (8.7%) were recruited. Seventy patients enrolled with C2B being the most effective (total, cost) recruitment strategy (n = 50) (p < .001). Conclusion: The efficacy of enrolling patients identified via a contact registry into clinical trials varies based on the communication strategies used for recruiting.
Couples who cohabit and then become engaged often participate in nontraditional living arrangemen... more Couples who cohabit and then become engaged often participate in nontraditional living arrangements and traditional marriage proposals. Because understandings of tradition and nontradition are constituted in discourse, we employed relational dialectics theory to examine the interplay of competing discourses in the talk of married participants who cohabited before engagement. Through retrospective interviews, we investigated the discursive struggles in participants’ talk across three contexts: pre-engagement cohabitation, the marriage proposal ritual, and the (re)telling of the proposal story to friends and family. Analysis of participant interviews illustrated three discursive struggles: (a) pragmatism and risk in cohabitation, (b) romance and partnership in the proposal ritual, and (c) privacy and revealment in the proposal ritual and (re)telling. We discuss how tradition and nontradition interplayed to redefine the engagement tradition, create new discursive meaning, and constitute couples’ shared identities.
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Papers by Elizabeth Flood-Grady