Beyond Exploratory: A Tailored Framework for Assessing Rigor in Qualitative Health Services Research

Objective: To propose a framework for assessing the rigor of qualitative research that identifies and distinguishes between the diverse objectives of qualitative studies currently used in patient-centered outcomes and health services research (PCOR and HSR). Study Design: Narrative review of published literature discussing qualitative guidelines and standards in peer-reviewed journals and national funding organizations that support PCOR and HSR. Principal Findings: We identify and distinguish three objectives of current qualitative studies in PCOR and HSR: exploratory, descriptive, and comparative. For each objective, we propose methodological standards that can be used to assess and improve rigor across all study phases—from design to reporting. Similar to quantitative studies, we argue that standards for qualitative rigor differ, appropriately, for studies with different objectives and should be evaluated as such. Conclusions: Distinguishing between different objectives of qualitative HSR improves the ability to appreciate variation in qualitative studies as well as appropriately evaluate the rigor and success of studies in meeting their own objectives. Researchers, funders, and journal editors should consider how adopting the criteria for assessing qualitative rigor outlined here may advance the rigor and potential impact of qualitative research in patient-centered outcomes and health services research

Age-Related Differences in Experiences With Social Distancing at the Onset of the COVID-19 Pandemic: A Computational and Content Analytic Investigation of Natural Language From a Social Media Survey

BackgroundAs COVID-19 poses different levels of threat to people of different ages, health communication regarding prevention measures such as social distancing and isolation may be strengthened by understanding the unique experiences of various age groups. ObjectiveThe aim of this study was to examine how people of different ages (1) experienced the impact of the COVID-19 pandemic and (2) their respective rates and reasons for compliance or noncompliance with social distancing and isolation health guidance. MethodsWe fielded a survey on social media early in the pandemic to examine the emotional impact of COVID-19 and individuals’ rates and reasons for noncompliance with public health guidance, using computational and content analytic methods of linguistic analysis. ResultsA total of 17,287 participants were surveyed. The majority (n=13,183, 76.3%) were from the United States. Younger (18-31 years), middle-aged (32-44 years and 45-64 years), and older (≥65 years) individuals significantly varied in how they described the impact of COVID-19 on their lives, including their emotional experience, self-focused attention, and topical concerns. Younger individuals were more emotionally negative and self-focused, while middle-aged people were other-focused and concerned with family. The oldest and most at-risk group was most concerned with health-related terms but were lower in anxiety (use of fewer anxiety-related terms) and higher in the use of emotionally positive terms than the other less at-risk age groups. While all groups discussed topics such as acquiring essential supplies, they differentially experienced the impact of school closures and limited social interactions. We also found relatively high rates of noncompliance with COVID-19 prevention measures, such as social distancing and self-isolation, with younger people being more likely to be noncompliant than older people (P<.001). Among the 43.1% (n=7456) of respondents who did not fully comply with health orders, people differed substantially in the reasons they gave for noncompliance. The most common reason for noncompliance was not being able to afford to miss work (n=4273, 57.3%). While work obligations proved challenging for participants across ages, younger people struggled more to find adequate space to self-isolate and manage their mental and physical health; middle-aged people had more concerns regarding childcare; and older people perceived themselves as being able to take sufficient precautions. ConclusionsAnalysis of natural language can provide insight into rapidly developing public health challenges like the COVID-19 pandemic, uncovering individual differences in emotional experiences and health-related behaviors. In this case, our analyses revealed significant differences between different age groups in feelings about and responses to public health orders aimed to mitigate the spread of COVID-19. To improve public compliance with health orders as the pandemic continues, health communication strategies could be made more effective by being tailored to these age-related differences

Understanding Asian Patients\u27 Lower Satisfaction With Health Care

Background/Aims: Asians now exceed Latinos as the highest proportion of new immigrants in the United States, totaling over 18 million. Asian patients report lower satisfaction with their health care than do non-Hispanic white (NHW) patients. The goal of this comparative, mixed-methods study was to explore Asian patients’ expectations and experiences with health care compared to NHW patients as well as how cultural norms related to evaluation may contribute to lower patient satisfaction among Asians. Methods: From July 2014 to August 2015 we conducted a comparative mixed-methods study with Chinese, South Asian and NHW patients from a large multispecialty clinic in Northern California. Electronic health records were used to select patients for recruitment, and invitations were sent via letter, phone and/or email. Chinese patients include those whose preferred language was Mandarin, Cantonese or English. As English is widely spoken among the South Asian patient population, these patients were screened for acculturation at recruitment to include equal numbers of high- and low-acculturation patients. Patients participated in either a focus group or cognitive interview, and all participants completed surveys including demographics and standardized measures of acculturation, health care expectations and satisfaction. Focus group participants discussed their expectations and experiences of care, while cognitive interview participants shared the cognitive processes underlying their evaluation of a standardized health care visit vignette. Focus groups and surveys for Chinese patients were conducted in their preferred language. All cognitive interviews were conducted in English. Results: We conducted focus groups with 58 Chinese (21 English-, 21 Mandarin-, and 16 Cantonese-speaking), 27 South Asian (14 high and 13 low acculturation) and 12 NHW patients, and cognitive interviews with 11 Chinese, 13 South Asian and 10 NHW patients (total N = 131). A comparative mixed-methods analysis is currently underway, employing descriptive and bivariate statistics and an integrated deductive and inductive thematic analysis. Results will compare subgroups of Asian and NHW patients in terms of: 1) expectations and experiences with health care, and 2) cognitive processes underlying evaluation of health care experiences. Conclusion: Pending results will provide a comparative examination of differences between Asian and NHW patients’ reported satisfaction with care and the factors underlying these differences

Beyond exploratory: a tailored framework for designing and assessing qualitative health research

The objective of this commentary is to develop a framework for assessing the rigour of qualitative approaches that identifies and distinguishes between the diverse objectives of qualitative health research, guided by a narrative review of the published literature on qualitative guidelines and standards from peer-reviewed journals and national funding organisations that support health services research, patient-centered outcomes research and other applied health research fields. In this framework, we identify and distinguish three objectives of qualitative studies in applied health research: exploratory, descriptive and comparative. For each objective, we propose methodological standards that may be used to assess and improve rigour across all study phases—from design to reporting. Similar to hierarchies of quality of evidence within quantitative studies, we argue that standards for qualitative rigour differ, appropriately, for studies with different objectives and should be evaluated as such. Distinguishing between different objectives of qualitative health research improves the ability to appreciate variation in qualitative studies and to develop appropriate evaluations of the rigour and success of qualitative studies in meeting their stated objectives. Researchers, funders and journal editors should consider how further developing and adopting the framework for assessing qualitative rigour outlined here may advance the rigour and potential impact of this important mode of inquiry.Patient-Centered Outcomes Research Institute (PCORI) AwardPatient-Centered Outcomes Research Institute - PCORI [ME-1409-22996]Open access journalThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study

Background: Social media provides a potential avenue for genetic counselors to address gaps in access to reliable genetics information for rare disease communities. However, only limited research has examined patient and family attitudes toward engaging with genetic counselors through social media. Objective: Our study assessed the attitudes of members of rare disease social media groups toward engaging with genetic counselors through social media, characteristics associated with greater interest, and the benefits and potential pitfalls of various approaches to such engagement. Methods: We conducted a mixed methods survey of patients and family members recruited from a systematic sample of rare disease Facebook groups. Patient characteristics and their associations with interest in engagement with genetic counselors were evaluated using univariate and bivariate statistics. Responses to open-ended questions were analyzed using thematic content analysis. Results: In total, 1053 individuals from 103 rare disease groups participated. The median overall interest in engaging with genetic counselors on social media was moderately high at 7.0 (IQR 4.0-9.0, range 0-10). No past experience with a genetic counselor was associated with greater interest in engaging with one through social media (µ=6.5 vs 6.0, P=.04). Participants expressed greatest interest (median 9.0, IQR 5.0-10.0) in engagement models allowing direct communication with genetic counselors, which was corroborated by the majority (n=399, 61.3%) of individuals who responded to open-ended questions explicitly stating their interest in 1-on-1 interactions. When asked what forms of support they would request from genetic counselors through social media, participants desired individualized support and information about how to access services. However, participants also expressed concerns regarding privacy and confidentiality. Conclusions: Patients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area.ISSN:1438-887

Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study

BackgroundSocial media provides a potential avenue for genetic counselors to address gaps in access to reliable genetics information for rare disease communities. However, only limited research has examined patient and family attitudes toward engaging with genetic counselors through social media. ObjectiveOur study assessed the attitudes of members of rare disease social media groups toward engaging with genetic counselors through social media, characteristics associated with greater interest, and the benefits and potential pitfalls of various approaches to such engagement. MethodsWe conducted a mixed methods survey of patients and family members recruited from a systematic sample of rare disease Facebook groups. Patient characteristics and their associations with interest in engagement with genetic counselors were evaluated using univariate and bivariate statistics. Responses to open-ended questions were analyzed using thematic content analysis. ResultsIn total, 1053 individuals from 103 rare disease groups participated. The median overall interest in engaging with genetic counselors on social media was moderately high at 7.0 (IQR 4.0-9.0, range 0-10). No past experience with a genetic counselor was associated with greater interest in engaging with one through social media (µ=6.5 vs 6.0, P=.04). Participants expressed greatest interest (median 9.0, IQR 5.0-10.0) in engagement models allowing direct communication with genetic counselors, which was corroborated by the majority (n=399, 61.3%) of individuals who responded to open-ended questions explicitly stating their interest in 1-on-1 interactions. When asked what forms of support they would request from genetic counselors through social media, participants desired individualized support and information about how to access services. However, participants also expressed concerns regarding privacy and confidentiality. ConclusionsPatients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area