HHS Public Access Author manuscript Author Manuscript
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08. Published in final edited form as: Stud Health Technol Inform. 2015 ; 208: 55–60.
Patient Narratives Representing Patient Voices to Inform Research: A Pilot Qualitative Study Joan S ASHa,1, Erika COTTRELLa, Lauren SAXTONa, Lucas NEWMANa, Eric GEBHARDTa, and Mark HELFANDa,b aOregon
Health & Science University, Portland, OR, USA
Author Manuscript
bPortland
VA Medical Center, Portland, OR, USA
Abstract We are investigating the feasibility and effectiveness of establishing a library of patient narratives to inform patient-centered research in the U.S. Veterans Affairs organization. Using qualitative methods, we conducted a needs assessment of 15 researchers and then interviewed and videotaped 11 veterans with traumatic brain injury or diabetes. We developed a method for displaying the narratives to researchers modeled after a UK initiative called DIPEx and then performed preliminary usability testing. We found that it is not only feasible to provide researchers with patient narratives that could help guide their research, but that similar narratives might be useful to practitioners, health system decision makers, and other patients as well.
Author Manuscript
Keywords Consumer health; patient narratives; research design; usability
Introduction
Author Manuscript
Patient-centeredness is now considered an essential component of a broader range of clinical and health services research, but researchers frequently find it difficult to incorporate patient perspectives, values and preferences into projects in a meaningful way. [1] Furthermore, few approaches to patient engagement or incorporation of patient perspectives in research are evidence-based. Researchers and clinicians will increasingly want and need access to the voice of patients and their families as well as models for how to effectively integrate this information into research. We believe that creating, cataloging and maintaining a collection of narratives could make patient voices available to researchers when they are developing and conducting studies and incorporating results into care. Creating such a library could increase efficiencies and eliminate barriers to patient-centered systematic reviews, clinical research, and health services research. Allowing narratives to inform multiple studies could be more efficient
© 2015 The authors and IOS Press. All rights reserved. 1 Corresponding Author, Joan S Ash, School of Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR, USA; [email protected].
ASH et al.
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Author Manuscript Author Manuscript
than obtaining patient input de novo for each new review or study and the availability of narratives may also reduce the time needed to obtain results if new interviews and focus groups are not required before the start of a study. Patient narratives, defined as stories told by health care consumers about health issues, have been useful for educating health care professionals, [2] and for their understanding patient views, especially when collected as meta-narratives into libraries and the text analyzed. [3] Research about the use of narratives to inform research is largely limited to improving narrative research, not health services or clinical research. [4–5] The Department of Veterans Affairs is especially interested in incorporating the patient voice into research. Two conditions that are especially prevalent among veterans are diabetes and traumatic brain injury (TBI). Nearly 25% of veterans in the Veterans Health Affairs program have diabetes [6] and 15% of those who served in active combat in Afghanistan and Iraq have mild TBI. [7] These areas seem ripe for stories because both diagnoses are life changing. Our aim was to investigate the feasibility of collecting patient narratives from TBI and diabetes patients and organizing and disseminating them so that they are useful to researchers.
1. Methods
Author Manuscript
Because our goal was to help inform research, we first conducted a needs assessment using qualitative interviewing to ask researchers how stories might be useful, at what point in the research process they might be used, what we should ask patient interviewees, and what form the library should take. We then conducted semi-structured interviews with patients to gather narratives, analyzed the results using both deductive and inductive methods, and experimented with different formats for dissemination. The study received human subjects approval from the joint Institutional Review Board for Oregon Health & Science University (OHSU) and the Portland VA. 1.1. Subject recruitment and selection For the needs assessment, we purposively selected VA and OHSU researchers who worked with TBI and diabetes patients. For patients, we used multiple recruitment methods to distribute flyers and announcements within the VA hospital itself and outside the VA through veterans’ organizations. Potential subjects were screened by phone so that we could be sure to include a gender, age, and severity of condition mix. Subjects provided written consent. 1.2. Data collection and analysis and format development and usability testing
Author Manuscript
We interviewed researchers using a semi-structured interview guide and analyzed transcripts using a template method. [8] With patients, we conducted 1–2 hour semi-structured interviews asking about the onset of their condition, early symptoms, their experience with their condition and how it changed their lives, their care, coping mechanisms, challenges their involvement in research studies, recommendations about research areas, and advice for other patients. The interviews, conducted jointly by two researchers and observed by a third, took place in a conference room in the VA hospital and were audio recorded and transcribed as well as videotaped. During this pilot phase, recordings were only read and viewed by the research team, so anonymity was not an issue. We used QSR NVivo to assist with analysis
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 3
Author Manuscript
of the transcripts. All were coded in two ways. First, we coded according to predetermined codes that followed our interview topics, a template method. [8] Then we used a grounded theory approach [9] to develop themes, with two investigators coding each and reaching agreement and a third researcher verifying those results after reading the transcripts. The entire team of five researchers discussed and agreed on interpretations during weekly meetings over a six-month period. We developed two types of dissemination vehicles and, with the help of a panel of researcher experts, performed preliminary usability testing.
2. Results 2.1. Needs assessment results
Author Manuscript
We interviewed 15 health services or clinical researchers affiliated with the Portland VA or OHSU about the usefulness of a library of patient narratives. They thought that increasing their understanding of patient priorities, justifying research in targeted areas, and referencing the library in background sections of grant proposals would be helpful. They might use narratives to inform planning for projects, gain ideas about recruitment, present research results in context, and justify additional research funding. They suggested provision of different formats (text, audio, and video), detailed indexing, summaries and distillations, and a guide for use of the library. 2.2. TBI interview results We interviewed five TBI patients and six diabetes patients, all from the Portland area. Analysis of the diabetes interviews is in process. Preliminary results from analysis of the TBI interviews include the following themes.
Author Manuscript Author Manuscript
•
Diagnosis/nature of the injury/early signs: again, there was variation here in that some were officially diagnosed and others not, some had more than one injury, some were in combat and others received their injuries in other ways. Early signs varied in some ways and were alike in others.
•
Ongoing symptoms/comorbidities: TBI and PTSD often occur together, as do depression, anger, cognitive impairment, suicidal ideation, and addictive behavior.
•
Challenges/impact on daily life: interviewees described their invisible disability, being “damaged goods”, challenges of cognitive impairment, and impact on relationships, as well as special challenges of reintegrating into society both after the military and after their injuries.
•
Coping mechanisms and support: these included internal strategies in addition to external sources of support, including family and friends and formal services inside and outside of the VA.
•
Reintegration into society: the journey was difficult for all of our subjects, both because of the TBI and also because leaving the military presented challenges as well.
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 4
•
Author Manuscript
Research role: suggestions for areas of research were more about health care services than they were about TBI. Interviewees offered insight into recruiting strategies.
2.3. Dissemination module development and indexing of transcripts The needs assessment suggested that researchers would like to see a variety of formats, so we used two strategies: first, we experimented with indexing the text of the transcripts, which would be relatively inexpensive; second, we developed a more time consuming but potentially very effective format using video clips and summaries of qualitative research results accessible on the web (rather than using our video, to protect the anonymity of subjects). The indexing was relatively straightforward, with an alphabetical index developed by human indexers to provide access to portions of the transcripts on topics of interest to researchers.
Author Manuscript
The module development was modeled after that designed by DIPEx, a UK project that produces Healthtalk (www.healthtalk.org) using rigorous qualitative methods. [10] Ours was geared towards an audience of researchers. A home page devoted to TBI offers a summary describing TBI and links to headings, which are our themes described above. If the user clicks on a theme, a description of the theme and links to video clips appear. 2.4. Usability assessment and feasibility estimate
Author Manuscript
We gathered a panel of ten experts who regularly attend a monthly health services research conference and held a focus group for assessing the indexed transcript format and the module format. The researchers had suggestions for improvement, agreed that they would find either format useful, and urged us to consider a broader audience for the module. While it would be feasible to develop a narrative library of indexed transcripts or carefully organized videos, researchers would prefer the latter, which would involve far greater expense.
3. Discussion and conclusion
Author Manuscript
While it was possible for us to recruit, interview, analyze, and present our findings in different formats, we did meet challenges and learned several lessons from this study. It was more difficult recruiting TBI patients than diabetes patients, possibly because they were hesitant to tell their stories even though as part of a research project, they were promised confidentiality. When we piloted the module with researchers, we learned that the interviews would likely be as interesting to other audiences, such as patients, clinicians, and health system decision makers, as to researchers. Producing a full module similar to those that are part of Healthtalk.org for TBI would be possible given funding and the possibility of recruiting from a broader population of TBI patients.
Acknowledgments The research reported/outlined here was supported by the Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service (project number SDR 13-227). Dr. Mark Helfand is the Principal Investigator at Portland VAMC. The views expressed in this article are those of the authors
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 5
Author Manuscript
and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.
References
Author Manuscript
1. PCORI (Patient-Centered Outcomes Research Institute) Methodology Committee. [Accessed 9/27/2014] The PCORI Methodology Report. 2013. www.pcori.org/assets/2013/11/PCORIMethodology-Report.pdf 2. Pullman D, Bethune C, Duke P. Narrative means to humanistic ends. Teaching & Learning in Medicine. 2005; 17:279–84. [PubMed: 16042526] 3. Merritt S, Turner LM. Creating better research spaces for narratives around male family relationships and identity: guidance from rural Australian men. Rural & Remote Health. 2013; 13:2462. [PubMed: 24188517] 4. Banks J. Storytelling to access social context and advance health equity research. Preventive Medicine. 2012; 55:394–7. [PubMed: 22064317] 5. Atkinson S, Rubinelli S. Narrative in cancer policy and research: voice, knowledge, and context. Critical Reviews in Oncology-Hematology. 2012; 84(Supp 2):511–16. 6. Diabetes QUERI Center 2011 Strategic Plan. Department of Veterans Affairs; 2011. www.queri.research.va.gov/about/strategic_plans/dm.pdf [Accessed 11/3/2014] 7. Traumatic Brain Injury. Department of Veterans Affairs Independent Study Course; 2010. www.publichealth.va.gov/docs/vhi/traumatic-brain-injury-vhi.pdf [Accessed 11/3/2014] 8. Crabtree, BF.; Miller, WL. Doing Qualitative Research. 2. Sage; Thousand Oaks, CA: 1999. 9. Glaser, BG.; Strauss, A. The Discover of Grounded Theory: Strategies for Qualitative Research. AldineTransaction; New Brunswick N.J: 1967. 10. Ziebland S, McPherson A. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Medical Education. 2006; 40:405–414. [PubMed: 16635119]
Author Manuscript Author Manuscript Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
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Table 1
Author Manuscript
Themes and representative quotes
Author Manuscript
Themes
Quotes
Diagnosis/early signs/nature of injury
“But initially, it’s the fact that you feel like an idiot, because you can’t remember your family’s name, you can’t remember what you did fifteen minutes ago, and words escape you, words you know, and you’re like and you can’t bring a word up, and then you lose it entirely.”
Ongoing symptoms/comorbidities
“My diagnosis was hypomania, which is some people consider bipolar, others don’t … I didn’t get the good stuff. I didn’t get the nice mania, but I got the negative, and since I already have—was predisposed to depression, dysthymia, well, this kicked in another one because I was damaged goods.” “I got rheumatoid arthritis in the hands, so now you’re talking rheumatoid arthritis, diabetes, TBI, PTSD—actually, then they called it adjustment disorder. You can’t have PTSD in the service.” “The computer screens, I always have to have a different color set, because if I didn’t it would— everybody’s like, “Why are you changing the screens?” “Because I can’t see it otherwise.” “Why are you changing it to large font?” “Because I can’t see it otherwise.”
Challenges/impact on daily life
“Well, yes. Well, my face was destroyed, so my older daughter, she stopped talking…my ex, it shook her up really badly, and she ended up with the brunt of dealing with health insurance companies, and doctors, and stuff, demanding money and calling the insurance company, it basically drove her over the edge. She fell apart.” “But I don’t drive anymore. I do okay as long as I’m driving forward. Backward, backing out I can’t, I just can’t do it.”
Coping mechanisms
“Drinking. Drinking went way up…” “I’ve found either distractions have been good, deep breathing, sitting down, laying down and writing things down, just writing down the problem itself so you can—what’s the word—sort of deconstruct because it’s big.”
Sources of support
“Because she’s actually my caregiver…She’s my memory. When I go to a medical appointment, I know I’m not going to remember any of it, so she does… It’s a huge impact having somebody you can count on, and can help you get to these medical appointments” “I feel a lot of veterans, especially the older ones, are not in the system, but even the younger guys coming back the hoops you have to jump through … I think a lot of people get frustrated, and they just give up, and they just don’t want to deal with all the red tape.”
Reintegration into society
“You know, depression, suicidal ideation, occupational impairment, social impairment.” “They always told me I should never work more than part-time. And you try to explain to them that you have to work or you can’t live. Because you’re not going to get assistance.”
Author Manuscript Author Manuscript Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08. Published in final edited form as: Stud Health Technol Inform. 2015 ; 208: 55–60.
Patient Narratives Representing Patient Voices to Inform Research: A Pilot Qualitative Study Joan S ASHa,1, Erika COTTRELLa, Lauren SAXTONa, Lucas NEWMANa, Eric GEBHARDTa, and Mark HELFANDa,b aOregon
Health & Science University, Portland, OR, USA
Author Manuscript
bPortland
VA Medical Center, Portland, OR, USA
Abstract We are investigating the feasibility and effectiveness of establishing a library of patient narratives to inform patient-centered research in the U.S. Veterans Affairs organization. Using qualitative methods, we conducted a needs assessment of 15 researchers and then interviewed and videotaped 11 veterans with traumatic brain injury or diabetes. We developed a method for displaying the narratives to researchers modeled after a UK initiative called DIPEx and then performed preliminary usability testing. We found that it is not only feasible to provide researchers with patient narratives that could help guide their research, but that similar narratives might be useful to practitioners, health system decision makers, and other patients as well.
Author Manuscript
Keywords Consumer health; patient narratives; research design; usability
Introduction
Author Manuscript
Patient-centeredness is now considered an essential component of a broader range of clinical and health services research, but researchers frequently find it difficult to incorporate patient perspectives, values and preferences into projects in a meaningful way. [1] Furthermore, few approaches to patient engagement or incorporation of patient perspectives in research are evidence-based. Researchers and clinicians will increasingly want and need access to the voice of patients and their families as well as models for how to effectively integrate this information into research. We believe that creating, cataloging and maintaining a collection of narratives could make patient voices available to researchers when they are developing and conducting studies and incorporating results into care. Creating such a library could increase efficiencies and eliminate barriers to patient-centered systematic reviews, clinical research, and health services research. Allowing narratives to inform multiple studies could be more efficient
© 2015 The authors and IOS Press. All rights reserved. 1 Corresponding Author, Joan S Ash, School of Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR, USA; [email protected].
ASH et al.
Page 2
Author Manuscript Author Manuscript
than obtaining patient input de novo for each new review or study and the availability of narratives may also reduce the time needed to obtain results if new interviews and focus groups are not required before the start of a study. Patient narratives, defined as stories told by health care consumers about health issues, have been useful for educating health care professionals, [2] and for their understanding patient views, especially when collected as meta-narratives into libraries and the text analyzed. [3] Research about the use of narratives to inform research is largely limited to improving narrative research, not health services or clinical research. [4–5] The Department of Veterans Affairs is especially interested in incorporating the patient voice into research. Two conditions that are especially prevalent among veterans are diabetes and traumatic brain injury (TBI). Nearly 25% of veterans in the Veterans Health Affairs program have diabetes [6] and 15% of those who served in active combat in Afghanistan and Iraq have mild TBI. [7] These areas seem ripe for stories because both diagnoses are life changing. Our aim was to investigate the feasibility of collecting patient narratives from TBI and diabetes patients and organizing and disseminating them so that they are useful to researchers.
1. Methods
Author Manuscript
Because our goal was to help inform research, we first conducted a needs assessment using qualitative interviewing to ask researchers how stories might be useful, at what point in the research process they might be used, what we should ask patient interviewees, and what form the library should take. We then conducted semi-structured interviews with patients to gather narratives, analyzed the results using both deductive and inductive methods, and experimented with different formats for dissemination. The study received human subjects approval from the joint Institutional Review Board for Oregon Health & Science University (OHSU) and the Portland VA. 1.1. Subject recruitment and selection For the needs assessment, we purposively selected VA and OHSU researchers who worked with TBI and diabetes patients. For patients, we used multiple recruitment methods to distribute flyers and announcements within the VA hospital itself and outside the VA through veterans’ organizations. Potential subjects were screened by phone so that we could be sure to include a gender, age, and severity of condition mix. Subjects provided written consent. 1.2. Data collection and analysis and format development and usability testing
Author Manuscript
We interviewed researchers using a semi-structured interview guide and analyzed transcripts using a template method. [8] With patients, we conducted 1–2 hour semi-structured interviews asking about the onset of their condition, early symptoms, their experience with their condition and how it changed their lives, their care, coping mechanisms, challenges their involvement in research studies, recommendations about research areas, and advice for other patients. The interviews, conducted jointly by two researchers and observed by a third, took place in a conference room in the VA hospital and were audio recorded and transcribed as well as videotaped. During this pilot phase, recordings were only read and viewed by the research team, so anonymity was not an issue. We used QSR NVivo to assist with analysis
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 3
Author Manuscript
of the transcripts. All were coded in two ways. First, we coded according to predetermined codes that followed our interview topics, a template method. [8] Then we used a grounded theory approach [9] to develop themes, with two investigators coding each and reaching agreement and a third researcher verifying those results after reading the transcripts. The entire team of five researchers discussed and agreed on interpretations during weekly meetings over a six-month period. We developed two types of dissemination vehicles and, with the help of a panel of researcher experts, performed preliminary usability testing.
2. Results 2.1. Needs assessment results
Author Manuscript
We interviewed 15 health services or clinical researchers affiliated with the Portland VA or OHSU about the usefulness of a library of patient narratives. They thought that increasing their understanding of patient priorities, justifying research in targeted areas, and referencing the library in background sections of grant proposals would be helpful. They might use narratives to inform planning for projects, gain ideas about recruitment, present research results in context, and justify additional research funding. They suggested provision of different formats (text, audio, and video), detailed indexing, summaries and distillations, and a guide for use of the library. 2.2. TBI interview results We interviewed five TBI patients and six diabetes patients, all from the Portland area. Analysis of the diabetes interviews is in process. Preliminary results from analysis of the TBI interviews include the following themes.
Author Manuscript Author Manuscript
•
Diagnosis/nature of the injury/early signs: again, there was variation here in that some were officially diagnosed and others not, some had more than one injury, some were in combat and others received their injuries in other ways. Early signs varied in some ways and were alike in others.
•
Ongoing symptoms/comorbidities: TBI and PTSD often occur together, as do depression, anger, cognitive impairment, suicidal ideation, and addictive behavior.
•
Challenges/impact on daily life: interviewees described their invisible disability, being “damaged goods”, challenges of cognitive impairment, and impact on relationships, as well as special challenges of reintegrating into society both after the military and after their injuries.
•
Coping mechanisms and support: these included internal strategies in addition to external sources of support, including family and friends and formal services inside and outside of the VA.
•
Reintegration into society: the journey was difficult for all of our subjects, both because of the TBI and also because leaving the military presented challenges as well.
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 4
•
Author Manuscript
Research role: suggestions for areas of research were more about health care services than they were about TBI. Interviewees offered insight into recruiting strategies.
2.3. Dissemination module development and indexing of transcripts The needs assessment suggested that researchers would like to see a variety of formats, so we used two strategies: first, we experimented with indexing the text of the transcripts, which would be relatively inexpensive; second, we developed a more time consuming but potentially very effective format using video clips and summaries of qualitative research results accessible on the web (rather than using our video, to protect the anonymity of subjects). The indexing was relatively straightforward, with an alphabetical index developed by human indexers to provide access to portions of the transcripts on topics of interest to researchers.
Author Manuscript
The module development was modeled after that designed by DIPEx, a UK project that produces Healthtalk (www.healthtalk.org) using rigorous qualitative methods. [10] Ours was geared towards an audience of researchers. A home page devoted to TBI offers a summary describing TBI and links to headings, which are our themes described above. If the user clicks on a theme, a description of the theme and links to video clips appear. 2.4. Usability assessment and feasibility estimate
Author Manuscript
We gathered a panel of ten experts who regularly attend a monthly health services research conference and held a focus group for assessing the indexed transcript format and the module format. The researchers had suggestions for improvement, agreed that they would find either format useful, and urged us to consider a broader audience for the module. While it would be feasible to develop a narrative library of indexed transcripts or carefully organized videos, researchers would prefer the latter, which would involve far greater expense.
3. Discussion and conclusion
Author Manuscript
While it was possible for us to recruit, interview, analyze, and present our findings in different formats, we did meet challenges and learned several lessons from this study. It was more difficult recruiting TBI patients than diabetes patients, possibly because they were hesitant to tell their stories even though as part of a research project, they were promised confidentiality. When we piloted the module with researchers, we learned that the interviews would likely be as interesting to other audiences, such as patients, clinicians, and health system decision makers, as to researchers. Producing a full module similar to those that are part of Healthtalk.org for TBI would be possible given funding and the possibility of recruiting from a broader population of TBI patients.
Acknowledgments The research reported/outlined here was supported by the Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service (project number SDR 13-227). Dr. Mark Helfand is the Principal Investigator at Portland VAMC. The views expressed in this article are those of the authors
Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 5
Author Manuscript
and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.
References
Author Manuscript
1. PCORI (Patient-Centered Outcomes Research Institute) Methodology Committee. [Accessed 9/27/2014] The PCORI Methodology Report. 2013. www.pcori.org/assets/2013/11/PCORIMethodology-Report.pdf 2. Pullman D, Bethune C, Duke P. Narrative means to humanistic ends. Teaching & Learning in Medicine. 2005; 17:279–84. [PubMed: 16042526] 3. Merritt S, Turner LM. Creating better research spaces for narratives around male family relationships and identity: guidance from rural Australian men. Rural & Remote Health. 2013; 13:2462. [PubMed: 24188517] 4. Banks J. Storytelling to access social context and advance health equity research. Preventive Medicine. 2012; 55:394–7. [PubMed: 22064317] 5. Atkinson S, Rubinelli S. Narrative in cancer policy and research: voice, knowledge, and context. Critical Reviews in Oncology-Hematology. 2012; 84(Supp 2):511–16. 6. Diabetes QUERI Center 2011 Strategic Plan. Department of Veterans Affairs; 2011. www.queri.research.va.gov/about/strategic_plans/dm.pdf [Accessed 11/3/2014] 7. Traumatic Brain Injury. Department of Veterans Affairs Independent Study Course; 2010. www.publichealth.va.gov/docs/vhi/traumatic-brain-injury-vhi.pdf [Accessed 11/3/2014] 8. Crabtree, BF.; Miller, WL. Doing Qualitative Research. 2. Sage; Thousand Oaks, CA: 1999. 9. Glaser, BG.; Strauss, A. The Discover of Grounded Theory: Strategies for Qualitative Research. AldineTransaction; New Brunswick N.J: 1967. 10. Ziebland S, McPherson A. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Medical Education. 2006; 40:405–414. [PubMed: 16635119]
Author Manuscript Author Manuscript Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
ASH et al.
Page 6
Table 1
Author Manuscript
Themes and representative quotes
Author Manuscript
Themes
Quotes
Diagnosis/early signs/nature of injury
“But initially, it’s the fact that you feel like an idiot, because you can’t remember your family’s name, you can’t remember what you did fifteen minutes ago, and words escape you, words you know, and you’re like and you can’t bring a word up, and then you lose it entirely.”
Ongoing symptoms/comorbidities
“My diagnosis was hypomania, which is some people consider bipolar, others don’t … I didn’t get the good stuff. I didn’t get the nice mania, but I got the negative, and since I already have—was predisposed to depression, dysthymia, well, this kicked in another one because I was damaged goods.” “I got rheumatoid arthritis in the hands, so now you’re talking rheumatoid arthritis, diabetes, TBI, PTSD—actually, then they called it adjustment disorder. You can’t have PTSD in the service.” “The computer screens, I always have to have a different color set, because if I didn’t it would— everybody’s like, “Why are you changing the screens?” “Because I can’t see it otherwise.” “Why are you changing it to large font?” “Because I can’t see it otherwise.”
Challenges/impact on daily life
“Well, yes. Well, my face was destroyed, so my older daughter, she stopped talking…my ex, it shook her up really badly, and she ended up with the brunt of dealing with health insurance companies, and doctors, and stuff, demanding money and calling the insurance company, it basically drove her over the edge. She fell apart.” “But I don’t drive anymore. I do okay as long as I’m driving forward. Backward, backing out I can’t, I just can’t do it.”
Coping mechanisms
“Drinking. Drinking went way up…” “I’ve found either distractions have been good, deep breathing, sitting down, laying down and writing things down, just writing down the problem itself so you can—what’s the word—sort of deconstruct because it’s big.”
Sources of support
“Because she’s actually my caregiver…She’s my memory. When I go to a medical appointment, I know I’m not going to remember any of it, so she does… It’s a huge impact having somebody you can count on, and can help you get to these medical appointments” “I feel a lot of veterans, especially the older ones, are not in the system, but even the younger guys coming back the hoops you have to jump through … I think a lot of people get frustrated, and they just give up, and they just don’t want to deal with all the red tape.”
Reintegration into society
“You know, depression, suicidal ideation, occupational impairment, social impairment.” “They always told me I should never work more than part-time. And you try to explain to them that you have to work or you can’t live. Because you’re not going to get assistance.”
Author Manuscript Author Manuscript Stud Health Technol Inform. Author manuscript; available in PMC 2015 April 08.
