Accepted Manuscript Title: Weblogs: a Complex Data Source for Qualitative Research Author: Melissa I. Owen, Lynne T. Braun, Rebekah J. Hamilton, Kathleen L. Grady, Rebecca A. Gary, Tammie E. Quest PII: DOI: Reference:
S1071-9164(17)31156-9 http://dx.doi.org/doi: 10.1016/j.cardfail.2017.08.453 YJCAF 4040
To appear in:
Journal of Cardiac Failure
Please cite this article as: Melissa I. Owen, Lynne T. Braun, Rebekah J. Hamilton, Kathleen L. Grady, Rebecca A. Gary, Tammie E. Quest, Weblogs: a Complex Data Source for Qualitative Research, Journal of Cardiac Failure (2017), http://dx.doi.org/doi: 10.1016/j.cardfail.2017.08.453. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Title: Weblogs: A complex data source for qualitative research Authors: Melissa I. Owen, PhD, RN Rush University College of Nursing 600 S. Paulina Street Suite 1080 Chicago, Illinois 60612 [email protected] Permanent Address: Nell Hodgson Woodruff School of Nursing, Emory University 1520 Clifton Road Room 336 Atlanta, Georgia 30322 Lynne T. Braun, PhD, CNP Rush University College of Nursing 600 S. Paulina Street Suite 1080 Chicago, Illinois 60612 [email protected] Rebekah J. Hamilton, PhD Rush University College of Nursing 600 S. Paulina Street Suite 1080 Chicago, Illinois 60612 [email protected] Kathleen L. Grady, PhD, RN Feinberg School of Medicine, Northwestern University NMH/Arkes Family Pavilion Suite 650 676 N Saint Clair Chicago IL 60611 [email protected] Rebecca A. Gary, PhD, RN Nell Hodgson Woodruff School of Nursing, Emory University 1520 Clifton Road Room 438 Atlanta, Georgia 30322 [email protected] Tammie E. Quest, MD Emory University School of Medicine 100 Woodruff Circle Atlanta, Georgia 30322
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[email protected] Corresponding Author: Melissa I. Owen, PhD, RN Nell Hodgson Woodruff School of Nursing, Emory University 1520 Clifton Road Room 336 Atlanta, Georgia 30322 404-727-5307 [email protected]
The authors confirm the following statements: 1. that there has been no duplicate publication or submission elsewhere of any part of the work (excluding abstracts) 2. that all authors have read and approved the manuscript 3. that there are no financial or other relations that could lead to a conflict of interest*
Abstract: Background: Social media has allowed patients and families to document the chronic illness experience though first person narratives in the form of blogs. Blogs give insight in the experience through a first-person perspective. Blogs can be used in qualitative research, but the methodology may be complicated. Method and Results: A study exploring the experience of heart transplant candidates was conducted using blog and interview analysis. Specific questions to be answered related to blog methodology included privacy concerns, sample size, missing demographics, and lack of opportunity for clarification. Findings included more personal disclosures of psychological concerns through interviews as compared to blogs. Conclusions: Blogs can be used in research, however, methodological concerns need to be explored and clarified prior to using this data source. Keywords: social media patient narrative
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To the Editor: Patients and families use blogs as illness narratives to describe and cope with chronic illness.1 Blogs are a website that is updated with posts usually written by a single author, and contain unsolicited, first-person perspectives on a particular subject.1-2 Patient blogs offer insight into living with chronic illness from a first-person perspective. Blogs can be a data source for providers to increase their knowledge of challenges experienced by patients, and also a data source for qualitative research. In this letter, we aim to describe considerations associated with blog research and to describe our experience using blogs for a qualitative study of heart transplant candidates’ palliative care needs. Blog research methodology is advantageous, yet complicated. Advantages to using blogs include the ability to obtain diverse perspectives without geographical limitations and a longitudinal perspective of the illness.3,4 However, the availability of blogs leads to concerns about participant protection. One question is whether blog analysis is considered research with human subjects. Researchers need to consider the privacy intentions of the author, as well as whether direct involvement occurs between the researcher and author. Additionally, a distinction can be made between blogs that are publicly available versus requiring permission or a password to access content. 4 It has been suggested that reading a blog does not qualify as interaction, and enables the blog to be considered public data.5 Other challenges with blogs include limited sample size, incomplete demographics, lack of clarification opportunities, difficulty defining inclusion/ exclusion criteria for posts, and systematic analysis. Blogs represent a finite number of potential participants and recruitment may be limited. Coupled with incomplete demographic information, this could lead to a nondiverse sample and limit the generalizability of findings. Additionally, lack of opportunity for clarification may lead to fragmented ideas or experiences, and inaccurate conclusions. Finally,
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lack of a systematic approach for inclusion, exclusion, and analysis of posts could lead to poor reliability and validity. Taking these challenges into consideration, we conducted a study exploring palliative care needs in heart transplant candidates. Several approaches were used to address these challenges. To allow for clarification and expansion on blog postings, authors were invited to participate in interviews. A theoretical framework, Comfort Theory, was chosen to guide development of the interview, and analysis of both interviews and blogs.6 Prior to participant recruitment and data collection, expedited IRB approval was obtained, without privacy concerns. Fifteen blogs were identified for inclusion, and of those, seven authors completed an interview. To achieve data saturation, additional participants were recruited for interviews only. Twentynine total sources were collected (15 blogs, 14 interviews). Demographics were incomplete for the majority of blogs without interviews. Most commonly identifiable data included sex (100%), geographic location (100%), diagnosis (100%), VAD (100%), priority status (86%) and age (71%). Least commonly identified were race (0%), educational level (15%), and religion (29%). Related to study demographics, median age of participants was less than the general transplant candidate population (34.5 years versus 54 years).7 This is not surprising as those who use social media and write blogs tend to be younger. Although it is unknown if current social media trends will continue, future samples of blogs may include an older, more representative population. However, current findings may not be generalizable to the experience of older adult candidates. Another finding related to blogs came from data source comparison. While blogs tended to express positivity and humor, interviews yielded more candid descriptions of psychological support needs. This is in contrast to prior research suggesting blogs provide more description of
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sensitive topics related to the perceived anonymity of the internet.4 One possible explanation is that the public nature of blogs coupled with candidates’ need to be perceived in a positive light may have led to self-censoring. A final consideration which was not addressed in this study is the time frame in which blogs were written. In this study, posts were written from 2009-2016. One question that remains is how long blog post experiences are still relevant. Is there a time point wherein treatment has changed significantly enough to warrant exclusion of the data? This question may need to be examined in future studies with blogs. In conclusion, blogs can be used as a qualitative data source in research, however, there are numerous challenges to consider when designing methodology for this type of study. As blogs are increasingly incorporated into research, it is important to address limitations and outstanding questions. Researchers must decide if these challenges can be adequately addressed prior to utilizing this data source.
Acknowledgements: This study was funded by the Rush University Golden Lamp Society Dissertation Award.
References 1. Heilferty, C. M. (2009). Toward a theory of online communication in illness: Concept analysis of illness blogs. Journal of Advanced Nursing, 65(7), 1539-1547. doi:10.1111/j.13652648.2009.04996.x 2. Herring, S. C., Scheidt, L. A., Wright, E., & Bonus, S. (2005). Weblogs as a bridging genre. Information Technology & People, 18(2), 142-171.
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3. Hookway, N. (2008). "Entering the blogosphere": Some strategies for using blogs in social research. Qualitative Research, 8(1), 91-113. doi:10.1177/1468794107085298 4. Seale, C., Charteris-Black, J., MacFarlane, A., & McPherson, A. (2010). Interviews and internet forums: A comparison of two sources of qualitative data. Qualitative Health Research, 20(5), 595-606. doi:10.1177/1049732309354094 5. Eastham, L. A. (2011). Research using blogs for data: Public documents or private musings? Research in Nursing & Health, 34(4), 353-361. doi:10.1002/nur.20443 6. Kolcaba, K. Y. (1994). A theory of holistic comfort for nursing. Journal of Advanced Nursing, 19(6), 1178-1184. 7. ISHLT. (2016). Adult Heart Transplantation Statistics. Retrieved from: http://www.ishlt.org/registries/slides.asp?slides=heartLungRegistry
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S1071-9164(17)31156-9 http://dx.doi.org/doi: 10.1016/j.cardfail.2017.08.453 YJCAF 4040
To appear in:
Journal of Cardiac Failure
Please cite this article as: Melissa I. Owen, Lynne T. Braun, Rebekah J. Hamilton, Kathleen L. Grady, Rebecca A. Gary, Tammie E. Quest, Weblogs: a Complex Data Source for Qualitative Research, Journal of Cardiac Failure (2017), http://dx.doi.org/doi: 10.1016/j.cardfail.2017.08.453. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Title: Weblogs: A complex data source for qualitative research Authors: Melissa I. Owen, PhD, RN Rush University College of Nursing 600 S. Paulina Street Suite 1080 Chicago, Illinois 60612 [email protected] Permanent Address: Nell Hodgson Woodruff School of Nursing, Emory University 1520 Clifton Road Room 336 Atlanta, Georgia 30322 Lynne T. Braun, PhD, CNP Rush University College of Nursing 600 S. Paulina Street Suite 1080 Chicago, Illinois 60612 [email protected] Rebekah J. Hamilton, PhD Rush University College of Nursing 600 S. Paulina Street Suite 1080 Chicago, Illinois 60612 [email protected] Kathleen L. Grady, PhD, RN Feinberg School of Medicine, Northwestern University NMH/Arkes Family Pavilion Suite 650 676 N Saint Clair Chicago IL 60611 [email protected] Rebecca A. Gary, PhD, RN Nell Hodgson Woodruff School of Nursing, Emory University 1520 Clifton Road Room 438 Atlanta, Georgia 30322 [email protected] Tammie E. Quest, MD Emory University School of Medicine 100 Woodruff Circle Atlanta, Georgia 30322
Page 1 of 6
[email protected] Corresponding Author: Melissa I. Owen, PhD, RN Nell Hodgson Woodruff School of Nursing, Emory University 1520 Clifton Road Room 336 Atlanta, Georgia 30322 404-727-5307 [email protected]
The authors confirm the following statements: 1. that there has been no duplicate publication or submission elsewhere of any part of the work (excluding abstracts) 2. that all authors have read and approved the manuscript 3. that there are no financial or other relations that could lead to a conflict of interest*
Abstract: Background: Social media has allowed patients and families to document the chronic illness experience though first person narratives in the form of blogs. Blogs give insight in the experience through a first-person perspective. Blogs can be used in qualitative research, but the methodology may be complicated. Method and Results: A study exploring the experience of heart transplant candidates was conducted using blog and interview analysis. Specific questions to be answered related to blog methodology included privacy concerns, sample size, missing demographics, and lack of opportunity for clarification. Findings included more personal disclosures of psychological concerns through interviews as compared to blogs. Conclusions: Blogs can be used in research, however, methodological concerns need to be explored and clarified prior to using this data source. Keywords: social media patient narrative
Page 2 of 6
To the Editor: Patients and families use blogs as illness narratives to describe and cope with chronic illness.1 Blogs are a website that is updated with posts usually written by a single author, and contain unsolicited, first-person perspectives on a particular subject.1-2 Patient blogs offer insight into living with chronic illness from a first-person perspective. Blogs can be a data source for providers to increase their knowledge of challenges experienced by patients, and also a data source for qualitative research. In this letter, we aim to describe considerations associated with blog research and to describe our experience using blogs for a qualitative study of heart transplant candidates’ palliative care needs. Blog research methodology is advantageous, yet complicated. Advantages to using blogs include the ability to obtain diverse perspectives without geographical limitations and a longitudinal perspective of the illness.3,4 However, the availability of blogs leads to concerns about participant protection. One question is whether blog analysis is considered research with human subjects. Researchers need to consider the privacy intentions of the author, as well as whether direct involvement occurs between the researcher and author. Additionally, a distinction can be made between blogs that are publicly available versus requiring permission or a password to access content. 4 It has been suggested that reading a blog does not qualify as interaction, and enables the blog to be considered public data.5 Other challenges with blogs include limited sample size, incomplete demographics, lack of clarification opportunities, difficulty defining inclusion/ exclusion criteria for posts, and systematic analysis. Blogs represent a finite number of potential participants and recruitment may be limited. Coupled with incomplete demographic information, this could lead to a nondiverse sample and limit the generalizability of findings. Additionally, lack of opportunity for clarification may lead to fragmented ideas or experiences, and inaccurate conclusions. Finally,
Page 3 of 6
lack of a systematic approach for inclusion, exclusion, and analysis of posts could lead to poor reliability and validity. Taking these challenges into consideration, we conducted a study exploring palliative care needs in heart transplant candidates. Several approaches were used to address these challenges. To allow for clarification and expansion on blog postings, authors were invited to participate in interviews. A theoretical framework, Comfort Theory, was chosen to guide development of the interview, and analysis of both interviews and blogs.6 Prior to participant recruitment and data collection, expedited IRB approval was obtained, without privacy concerns. Fifteen blogs were identified for inclusion, and of those, seven authors completed an interview. To achieve data saturation, additional participants were recruited for interviews only. Twentynine total sources were collected (15 blogs, 14 interviews). Demographics were incomplete for the majority of blogs without interviews. Most commonly identifiable data included sex (100%), geographic location (100%), diagnosis (100%), VAD (100%), priority status (86%) and age (71%). Least commonly identified were race (0%), educational level (15%), and religion (29%). Related to study demographics, median age of participants was less than the general transplant candidate population (34.5 years versus 54 years).7 This is not surprising as those who use social media and write blogs tend to be younger. Although it is unknown if current social media trends will continue, future samples of blogs may include an older, more representative population. However, current findings may not be generalizable to the experience of older adult candidates. Another finding related to blogs came from data source comparison. While blogs tended to express positivity and humor, interviews yielded more candid descriptions of psychological support needs. This is in contrast to prior research suggesting blogs provide more description of
Page 4 of 6
sensitive topics related to the perceived anonymity of the internet.4 One possible explanation is that the public nature of blogs coupled with candidates’ need to be perceived in a positive light may have led to self-censoring. A final consideration which was not addressed in this study is the time frame in which blogs were written. In this study, posts were written from 2009-2016. One question that remains is how long blog post experiences are still relevant. Is there a time point wherein treatment has changed significantly enough to warrant exclusion of the data? This question may need to be examined in future studies with blogs. In conclusion, blogs can be used as a qualitative data source in research, however, there are numerous challenges to consider when designing methodology for this type of study. As blogs are increasingly incorporated into research, it is important to address limitations and outstanding questions. Researchers must decide if these challenges can be adequately addressed prior to utilizing this data source.
Acknowledgements: This study was funded by the Rush University Golden Lamp Society Dissertation Award.
References 1. Heilferty, C. M. (2009). Toward a theory of online communication in illness: Concept analysis of illness blogs. Journal of Advanced Nursing, 65(7), 1539-1547. doi:10.1111/j.13652648.2009.04996.x 2. Herring, S. C., Scheidt, L. A., Wright, E., & Bonus, S. (2005). Weblogs as a bridging genre. Information Technology & People, 18(2), 142-171.
Page 5 of 6
3. Hookway, N. (2008). "Entering the blogosphere": Some strategies for using blogs in social research. Qualitative Research, 8(1), 91-113. doi:10.1177/1468794107085298 4. Seale, C., Charteris-Black, J., MacFarlane, A., & McPherson, A. (2010). Interviews and internet forums: A comparison of two sources of qualitative data. Qualitative Health Research, 20(5), 595-606. doi:10.1177/1049732309354094 5. Eastham, L. A. (2011). Research using blogs for data: Public documents or private musings? Research in Nursing & Health, 34(4), 353-361. doi:10.1002/nur.20443 6. Kolcaba, K. Y. (1994). A theory of holistic comfort for nursing. Journal of Advanced Nursing, 19(6), 1178-1184. 7. ISHLT. (2016). Adult Heart Transplantation Statistics. Retrieved from: http://www.ishlt.org/registries/slides.asp?slides=heartLungRegistry
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