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Patient Perspectives of Barriers and Facilitators of Treatment-Seeking Behaviors for Stroke Care Jamie Beckett, Jessica Barley, Charles Ellis
ABSTRACT Objective: Delays in seeking treatment for stroke care are associated with greater disability and reductions in stroke outcomes. The objective of this study was to qualitatively examine facilitators and barriers to urgently seeking stroke-related care. Methods: A qualitative analytic approach was used to explore facilitators and barriers to seeking stroke care in an urgent manner. Sixty-four stroke survivors offered information related to facilitators and barriers to stroke care via a structured survey as part of a larger mixed-methods study designed to measure stroke outcomes. Results: Three themes emerged related to facilitators and barriers: (a) recognition of symptoms, (b) social support, and (c) knowledge and ability to call emergency medical services as a first response. Facilitators to urgent care-seeking behaviors included classic stroke symptoms, severe symptoms, sudden symptom onset, and high perceived level of emergency. Social support and knowledge/ability to call emergency medical services also emerged as facilitators of urgent care. Barriers to urgent care-seeking behaviors included atypical symptoms, mild symptoms, gradual symptom onset, and low perceived level of emergency. Conclusions: Individuals who experience strokes face a number of facilitators and barriers to seeking urgent care for their condition. Facilitators and barriers are associated with stroke symptoms and their personal environments. Additional study of barriers to stroke care is needed to adequately design interventions to reduce delays in seeking treatment. Keywords: care-seeking behaviors, delays, stroke, treatment
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Jamie Beckett, MS, is a Graduate Student, Department of Health Professions, Medical University of South Carolina, Charleston, SC.
Despite increased use of rTPA, patient treatmentseeking behaviors are one contributing factor to few patients arriving within the 3-hour window necessary to receive the benefit of rTPA (Ellis, Knapp, Gilbert, & Egede, 2013; Faiz, Sundseth, Thommessen, & Ronning, 2013; Hsia et al., 2011). Studies of treatment-seeking behaviors for stroke care have been primarily quantitative in nature and designed to identify associations between clinical and demographic variables and measures of the time from symptom onset to initiation of seeking treatment (Ellis et al., 2013; Faiz et al., 2013; Hsia et al., 2011). Less attention has been given to qualitative approaches designed to explore this phenomenon from the patient perspective. Therefore, the objective of this study was to qualitatively explore facilitators and barriers of urgent treatment-seeking stroke care in a sample of stroke survivors. Qualitative approaches can offer a unique perspective and novel insights into treatment-seeking behaviors for stroke care. The study was designed to identify both barriers of facilitators of urgent treatmentseeking behaviors for stroke-related care.
Jessica Barley, BS, is a Neurophysiologist, Department of Neurosciences, Clinical Neurophysiology, Medical University of South Carolina, Charleston, SC. The authors declare no conflicts of interest.
Methods Study Sample
he worldwide burden of stroke is substantial with ~15 million individuals experiencing strokes annually (World Health Organization, 2012). Many stroke survivors are left with long-term disability resulting in significant reductions in quality of life for both stroke survivors (Luengo-Fernandez et al., 2013) and their spouses (Tellier, Rochette, & Lefebvre, 2011). Evidence indicates that early intervention including the use of recombinant tissue plasminogen activator (rTPA) can significantly improve outcomes and reduce poststroke disability even among individuals experiencing a mild stroke if administered within the first 3 hours of symptom onset (Hassan et al., 2010). Consequently, delivering early treatment is a goal of clinicians providing treatment for acute stroke (Tong et al., 2012).
Questions or comments about this article may be directed to Charles Ellis, PhD, at [email protected]. He is an Associate Professor, Department of Communication Sciences & Disorders, East Carolina University, Greenville, NC.
Copyright B 2015 American Association of Neuroscience Nurses DOI: 10.1097/JNN.0000000000000134
A sample of patients was recruited who experienced a stroke and were being seen at outpatient clinics in
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
Volume 47
South Carolina and Georgia (USA). Participants for the project were stroke survivors who were able to provide information about their treatment-seeking behaviors after their stroke onset. Inclusion criteria were (a) age Q18 years; (b) history of stroke within the past 2 years, confirmed by magnetic resonance imaging or computed tomography scan report in the medical record; and (c) ability to communicate in English. Exclusion criteria were (a) coexisting neurologic conditions or progressive disease (e.g., dementia, Parkinson disease) and (b) severe stroke sequelae (e.g., aphasia, vision loss, or hearing loss) precluding completion of the study questionnaire. To identify stroke survivors, assistance was elicited from primary care providers. Primary care providers sent a letter to potential participants explaining the study. The letter provided information about the study, explained the study requirements, and clarified that only subjects meeting certain eligibility criteria would be able to participate in the study. Subjects agreeing to participate were seen at their usual treatment facility where they provided written consent to participate in the study. The study was approved by the local university institutional review board.
Procedure All participants completed a comprehensive survey in a quiet office. Participants were asked survey questions to obtain demographic information about the following: age, age at the time of stroke (stroke age), race, gender, education, income, marital status, insurance status, and regular doctor visits. They were also asked if they sought care for stroke within 3 hours of symptom onset. To explore facilitators and barriers to seeking treatment, the survey contained an open-ended question designed to examine stroke recognition. Participants were asked ‘‘When did you first recognize that you were having a stroke?’’ The question was asked in an open-ended fashion, and all responses were accepted regardless of short answer responses (e.g., the specific time the participant recognized the stroke), or detailed accounts of the stroke event were recorded. All responses were written verbatim. The last author (C. E.), who had previous experience conducting interviews with stroke survivors, interviewed all participants and collected all responses. Each participant was allowed to discuss his or her personal experience with stroke and, in particular, his or her approach to seeking treatment.
Data Management and Data Analysis Approach All written responses were saved in a common word processing format to facilitate analysis. A constructivist grounded theory approach was used to identify
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Although clinicians clearly understand the concept of early treatment for acute stroke, patients’ treatment-seeking behaviors are a factor in delays in treatment within the optimal 3-hour window. This study examines facilitators and barriers to treatment from patients’ perspectives. emerging themes from the responses to code the response data. Constructivist grounded theory is the process of identifying analytical categories as they emerge from the data (Glaser & Strauss, 1967). Constructivist grounded theory is used to develop hypotheses from the ground or research field upwards, but it is not used to test theory. Constant comparisons are completed, which result in emergent themes that are indexed and compared with the rest of the data to establish analytical categories. Analytical categories are further refined because additional data are collected until groups of key themes or categories are identified. The reduced themes and categories are then used to inform the developing theoretical analyses. Consistent with the above approach, a content analysis of the survey responses was conducted through multiple close readings of the transcriptions by the three authors. Each author generated an independent list of thematic categories and subcategories based on their review of the data. These themes were then further developed and ordered by the last author and reviewed and edited by the others. The authors then met in a consensus conference to discuss the categories, resolve questions, and refine the thematic categories. Once this was accomplished, the themes were again reviewed by all authors. After additional discussion to review and refine categories and resolve questions, the final thematic categories were completed, and higherorder categories were developed. The corresponding author (C. E.) has used this analytic approach to qualitative research.
Results The sample consisted of 64 ischemic stroke survivors who offered information about facilitators and barriers to seeking treatment for their stroke. The sample consisted of 54% who identified themselves as White,
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
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96% were men, 63% were married, 63% had insurance, 73% reported incomes of G$25,000, and 55% had at least some college. The mean age of the sample was 63.3 years. All stroke survivors resided in their homes at the time of this study. Qualitative data that were associated with seeking stroke-related care within the first 3 hours after recognition of stroke symptom onset were considered a facilitator of seeking treatment, whereas information associated with seeking stroke-related care outside the first 3 hours was considered a barrier. Along those lines, three common themes emerged as facilitators and barriers to seeking treatment. However, it is important to note that the characteristics of the individual and their circumstances may contribute to the stroke event as a facilitator for one and a barrier in another. The three emerging themes were recognition of symptoms, social support, and knowledge of appropriate first response (see Table 1 for a summary of theme-related data).
barriers of treatment-seeking behaviors. Experiencing a stroke in the presence of others was a key facilitator of urgent stroke care. Participants offered evidence that having a loved one or even co-worker present increases the chances of 9-1-1 being called as a first response. In contrast, experiencing a stroke alone was a barrier to seeking urgent stroke care or call 9-1-1 as a first response particularly among those experiencing severe strokes. Similarly, taking care of a loved one or participating in important community social roles may serve as a barrier to urgent treatment-seeking behaviors. For example, the individual might ignore his or her minor stroke symptoms in favor of offering social support or carrying out a previous social role (i.e., spousal caregiving).
Theme 1: Recognition of Symptoms
Knowledge and ability to call emergency medical services (EMS) as an appropriate first response emerged as a key theme in understanding facilitators and barriers of treatment-seeking behaviors. Facilitators included knowledge of or ability to access EMS (9-1-1) whether by the patient or bystander/loved one. One patient reported experiencing a stroke while driving and being in the vicinity of a medical center. Because his symptoms were initially mild, he was able to drive to the nearby hospital. A best case scenario was reported among several participants: being in a healthcare facility at the time of stroke. In contrast, not calling EMS as a first response was a barrier to urgent stroke-related care. Some participants experienced immediate severe symptoms that precluded their ability to access EMS. Other participants reported calling a loved one or a healthcare clinic associated with the symptom they were experiencing as a first response that resulted in a delay in seeking treatment (DST). Unfortunately, lack of reliable transportation was reported as a contributor to DSTs. In such case, 9-1-1 was not perceived as the best first response.
Qualitative information related to the onset of their symptoms in relationship to their treatment-seeking behaviors was reported. Stroke-related symptoms included paralysis, nausea, slurred speech or inability to speak, loss of consciousness, loss of sensation, impaired coordination and weakness, headache, dizziness, and pain. Recognition of symptoms that were attributed to stroke or other health condition was influenced by type, number, severity, and type of onset (gradual vs. immediate). Symptoms that reportedly influenced more urgent treatment-seeking behaviors or ‘‘facilitators’’ were those that were (a) perceived as severe, (b) classic stroke symptoms, (c) of sudden onset, (d) perceived as an emergency even if not stroke, or (e) experienced transient ischemic attack (TIA) or stroke. A range of symptoms were reported that did not result in urgent treatment-seeking behaviors. Symptoms that did not encourage urgent treatment-seeking behaviors or ‘‘barriers’’ were those that were (a) perceived as mild or moderate, (b) atypical or perceived as not classic (nausea, headache, pain, etc.), (c) gradual or fluctuating onset, (d) present when awaking from sleep, (e) attributed to another health condition, or (f) experienced a diagnosed TIA and expected to clear. Interestingly, previous experience with TIA or mild stroke was both a barrier and facilitator of treatmentseeking behavior based on the type, complexity, and severity of the individual’s symptom profile during the initial neurological event.
Theme 2: Social Support Presence or absence of a family member, friend, or other individuals important to the stroke survivor’s prestroke lifestyle emerged as both facilitators and
Theme 3: Knowledge and Ability to Call Emergency Medical Services as a First Response
Discussion Qualitative data from this study suggest that a range of barriers and facilitators to urgent treatment-seeking behaviors for stroke care exist. Individuals who experience strokes are faced with a complex array of considerations based on their own understanding and perceptions of the stroke event itself. In addition, there are factors in their personal environments (social support and access to EMS) that also impact their treatmentseeking behaviors. These factors positively and negatively influence their decision-making process and ultimately contribute to their outcomes. The findings reported here
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
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TABLE 1.
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Facilitators and Barriers of Seeking Treatment Recognition of Symptoms
Facilitator & Severe intensity Body go blank; ‘‘legs would not move and could not talk.’’ (45 minutes) & Classic symptoms Preparing for work; ‘‘lost sensation and had weakness in hand’’ (G3 hours) & Sudden onset On the phone with sister; speech became slurred and arm started tingling (G3 hours) & Recognize symptoms as an emergency, even if not recognized as a stroke Did not initially realize as stroke; felt like the house was moving from left to right. Tried to get up but fell back to the floor; ‘‘eventually made way to the phone on my hands and knees’’ (G3 hours) Did not initially recognize as stroke; had trouble breathing and numbness on one side. ‘‘Wife brought to ER.’’ (G3 hours) Recognized symptoms at midnight; called 9-1-1 (G3 hours) & Previous experience with stroke or TIA Had previous mini-stroke before; ‘‘called 911.’’ (G3 hours)
Barrier & Mild to moderate or fluctuating in intensity Tried to work through symptoms and allow to pass (924 hours) & Atypical symptoms ‘‘Did not know anything was wrong until tried to write.’’ (924 hours) ‘‘Symptoms entirely different from previous stroke.’’ (2 days) ‘‘Had numbness for about 3 months and started having difficulty counting at work.’’ (924 hours) Patient passed out while driving (unsure how long delay) & Gradual/stepwise/fluctuating onset Fell but then felt better; knew something was wrong when wife picked up from a meeting. ‘‘Has no memory of the day past 12 pm.’’ (9Y12 hours) Leaned over and everything went blank but it went away. ‘‘Later that night lost strength in my hand and had slurred speech.’’ (12Y24 hours) & Poor knowledge of stroke and stroke symptoms Had a headache, dizziness, slurred speech, and pain in arm; ‘‘didn’t think it was a stroke.’’ (3 days) & Symptoms upon waking ‘‘Slept all day and woke up with facial weakness.’’ (9Y12 hours) & Attribute symptoms to another health condition or circumstance Weakness slowly progressed; ‘‘thought it was related to car accident previous month.’’ (924 hours) ‘‘Tingling in fingers but I decided it was because of the degenerative arthritis in neck.’’ (4 days) & Undiagnosed TIA or stroke that resolved spontaneously TIA twice before while driving, this time the symptoms did not clear (9Y12 hours) Social Support
Facilitator & With another person at onset
Barrier & Alone at onset
Could not get down the steps; ‘‘had to wait for someone ‘‘My wife noticed it and called 911.’’ (G3 hours) strong enough to assist before I could call 911’’ (9Y12 hours) Patient was at work Did not recognize; ‘‘recognized by co-worker who noticed & Responsibilities or commitments conflict with seeking treatment Wife critically ill; ‘‘made excuses for the deficits’’ (6Y9 hours) lip drooping, foot dragging and speech’’ (G3 hours) Symptoms present but decided to wait to teach Bible study & Able to consult with another person at onset later that day (9Y12 hours) Called daughter first who convinced was stroke; ‘‘drove to the hospital’’ (G3 hours) Knowledge and Ability to Call EMS Facilitator & Knowledge and first action to call 9-1-1
Barrier & Lack of reliable transportation
‘‘My wife noticed it and called 911.’’ (G3 hours) Call 9-1-1 as first action & Close proximity to medical facility On the interstate taking wife to the doctor. ‘‘Near a hospital at onset of symptoms.’’ (G3 hours) At the eye clinic at onset of symptoms (G3 hours)
Fell when getting out of bed and kept falling down. ‘‘Called immediately but waited 1.5 hrs for the ambulance to arrive.’’ (3Y6 hours) & First medical contact not 911 Wife called clinic and they instructed to just keep an eye on symptoms (12Y24 hours)
Note. EMS = emergency medical services; ER = emergency room; TIA = transient ischemic attack.
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
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and based on patient reports of their stroke event highlight the nature of barriers to stroke care and offer evidence of why only a small number of patients reach hospitals in a timely manner. For example, a recent study by Tong and colleagues reported that only a small percentage (25%) of patients reached the hospital in less than 3 hours from symptom onset (Tong et al., 2012). More importantly, these findings highlight the complex nature and contributors to treatment-seeking behaviors and the problems patients and practitioners experience when attempting to reduce delays in seeking stroke care and improving stroke outcomes. This study used a qualitative approach to obtain patient report of facilitators and barriers to treatment seeking for care rather than approaches to examine quantitative associations. However, the findings of this study are consistent with previous quantitative evidence related to seeking rapid treatment for stroke. For example, a comprehensive review by Moser and colleagues concluded that DST for stroke care can be influenced by patient-related social, cognitive, and emotional factors (Moser et al., 2006). In addition, facilitators reported in the included patients experiencing ‘‘classic’’ symptoms and whether the person experiencing a stroke knew someone who had also experienced from a stroke (Moser et al., 2006). Similarly, Faiz and colleagues found that, when those experiencing the stroke was living with someone or when the symptoms were perceived as severe, patients sought care more urgently (i.e., shorter delays; Faiz et al., 2013). The findings reported are congruent with barriers to seeking treatment. Moser and colleagues reported that DST was increased when the patient lived alone, had a nocturnal onset of symptoms, and was not located near a hospital at the time of onset (Moser et al., 2006). Hsia and colleagues also found that patients often did not recognize that they were having a stroke and that their initial beliefs held that their symptoms were not serious enough to seek treatment (Hsia et al., 2011). Finally, Faiz and colleagues noted that patients with stroke may have significant deficits such as aphasia, reduced consciousness, and cognitive impairment that prevent rapid treatment-seeking behaviors (Faiz et al., 2013). In addition, they found that previous stroke knowledge was not associated with more urgent decisions to seek treatment, and consequently, patients’ perceptions of their stroke knowledge may be inaccurate. Use of EMS and other transportation issues also emerged as key to treatment-seeking behaviors. Knowledge and immediate use of EMS at symptom onset along with being in close proximity to a hospital served as facilitators to urgent treatment-seeking behaviors. In contrast, individuals who decided to bypass EMS services and those who experienced delays in EMS arrival reported greater DSTs. In addition, those individuals
who decided to call their healthcare provider as a first response rather than EMS were more likely to report DST. Despite national campaigns to use EMS in the event of a stroke, previous studies have reported inconsistent use of EMS during stroke. Severity of symptoms has been associated with greater likelihood to use EMS (Faiz et al., 2013). Surprisingly, previous knowledge of stroke was not associated with urgent use (Faiz et al., 2013). The relationship between reported intent to use EMS and actual use is not clear (Hsia et al., 2011). Although findings reported here are interesting, this study is not without limitations. First, sample bias should be considered in the interpretation of the findings. For example, the data reported here emerged from a sample of stroke survivors from one region in the United States. Similarly, all participants were literate and spoke English, which are known barriers to treatmentseeking behaviors. Second, the sample was primarily male and does not account for known gender differences in DST for stroke care (de Ridder, Dirks, Niessen, & Dippel, 2013). Third, the sample was small, and the qualitative nature to the work limits its generalizability to the general stroke population. Fourth, although the data appear to adequately reflect their treatment-seeking behaviors, the potential for memory bias exists. Fifth, it is possible that the sample had less severe stroke and minimal poststroke consequences (aphasia, cognitive deficits, etc.). Similarly, the presence of mild strokes or those with gradual onset of symptoms may have influenced their treatment-seeking behaviors independently. Sixth, all participants were being seen by a primary care provider, thereby potentially offering greater educational opportunities to improve knowledge to barriers to treatment-seeking behaviors. The data reported here suggest that a range of factors contribute to DST for stroke care. These findings extend beyond traditional reports and offer a qualitative account of DST for stroke care from the patient and, subsequently, ‘‘stroke survivor’’ perspective. These findings further highlight the need for novel interventions to address the complex nature of DST for stroke and the highly variable characteristics of individuals who experience strokes.
Implications for Neuroscience Nurses These findings are highly relevant for neuroscience nurses because recently revised guidelines for the management of patients with stroke highlight the need for multidisciplinary care including nurses at all levels of care (trauma, critical care, acute care, inpatient rehabilitation) to limit the morbidity and mortality associated with stroke (Jauch et al., 2013). These guidelines emphasize stroke management ranging from acute diagnosis to early inpatient management and secondary
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
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prevention, all areas where neuroscience nurses play a critical role, and in particular, education. For example, neuroscience nurses play a critical role in educating individuals at risk for stroke and the approximately 185,000 Americans who will experience a recurrent stroke each year (Go et al., 2013). Therefore, understanding patient perspectives of barriers and facilitators of treatment-seeking behaviors can enhance current strategies to increase the urgency by which those experiencing a stroke seek care. Neuroscience nurses will need to continue this critical role of patient and family education along with their traditional roles in patient management (American Association of Neuroscience Nurses, 2008).
Acknowledgment Dr. Ellis was supported by a career development award (CDA# 07-012-3) from the Veterans Health Administration Health Services Research and Development program for this project.
REFERENCES American Association of Neuroscience Nurses. (2008). Guide to the care of the hospitalized patient with ischemic stroke (2nd ed.). Glenview, IL: Author. de Ridder, I., Dirks, M., Niessen, L., & Dippel, D. (2013). Unequal access to treatment with intravenous alteplase for women with acute ischemic stroke. Stroke, 44, 2610Y2612. Ellis, C., Knapp, R. G., Gilbert, G. E., & Egede, L. E. (2013). Factors associated with delays in seeking treatment for stroke care in veterans. Journal of Stroke and Cerebrovascular Diseases, 22(7), e136Ye141. doi:10.1016/j.jstrokecerebrovasdis.2012.09.017 Faiz, K. W., Sundseth, A., Thommessen, B., & Ronning, O. M. (2013). Factors related to decision delay in acute stroke. Journal of Stroke and Cerebrovascular Diseases, 23, 534Y539. Glaser, B. A., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, CA: Aldine.
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Go, A. S., Mozaffarian, D., Roger, V. L., Benjamin, E. J., Berry, J. D., Borden, W. B., I American Heart Association Statistics Committee and Stroke Statistics Subcommittee. (2013). Heart disease and stroke statisticsV2013 update: A report from the American Heart Association. Circulation, 127(1), e6Ye245. Hassan, A. E., Zacharatos, H., Hassanzadeh, B., El-Gengaihy, A., AlKawi, A., Shhadeh, A., & Kirmani, J. F. (2010). Does mild deficit for patients with stroke justify the use of intravenous tissue plasminogen activator? Journal of Stroke and Cerebrovascular Diseases, 19(2), 116Y120. Hsia, A. W., Castle, A., Wing, J. J., Edwards, D. F., Brown, N. C., Higgins, T. M., I Kidwell, C. S. (2011). Understanding reasons for delay in seeking acute stroke care in an underserved urban population. Stroke, 42(6), 1697Y1701. Jauch, E. C., Saver, J. L., Adams, H. P. Jr., Bruno, A., Connors, J. J., Demaerschalk, B. M., I Council on Clinical Radiology. (2013). Guidelines for the early management of patients with acute ischemic stroke: A guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke, 44(3), 870Y947. Luengo-Fernandez, R., Gray, A. M., Bull, L., Welch, S., Cuthbertson, F., Rothwell, P. M., & Oxford Vascular Study. (2013). Quality of life after TIA and stroke: Ten-year results of the Oxford Vascular Study. Neurology, 81(18), 1588Y1595. Moser, D. K., Kimble, L. P., Alberts, M. J., Alonzo, A., Croft, J. B., Dracup, K., I Zerwic, J. J. (2006). Reducing delay in seeking treatment by patients with acute coronary syndrome and stroke: A scientific statement from the American Heart Association Council on cardiovascular nursing and stroke council. Circulation, 114(2), 168Y182. Tellier, M., Rochette, A., & Lefebvre, H. (2011). Impact of mild stroke on the quality of life of spouses. International Journal of Rehabilitation Research, 34(3), 209Y214. Tong, D., Reeves, M. J., Hernandez, A. F., Zhao, X., Olson, D. M., Fonarow, G. C., I Smith, E. E. (2012). Times from symptom onset to hospital arrival in the Get with the GuidelinesYStroke Program 2002 to 2009: Temporal trends and implications. Stroke, 43(7), 1912Y1917. World Health Organization. (2012). Global burden of stroke. Retrieved from http://www.who.int/cardiovascular_diseases/en/ cvd_atlas_15_burden_stroke.pdf
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Patient Perspectives of Barriers and Facilitators of Treatment-Seeking Behaviors for Stroke Care Jamie Beckett, Jessica Barley, Charles Ellis
ABSTRACT Objective: Delays in seeking treatment for stroke care are associated with greater disability and reductions in stroke outcomes. The objective of this study was to qualitatively examine facilitators and barriers to urgently seeking stroke-related care. Methods: A qualitative analytic approach was used to explore facilitators and barriers to seeking stroke care in an urgent manner. Sixty-four stroke survivors offered information related to facilitators and barriers to stroke care via a structured survey as part of a larger mixed-methods study designed to measure stroke outcomes. Results: Three themes emerged related to facilitators and barriers: (a) recognition of symptoms, (b) social support, and (c) knowledge and ability to call emergency medical services as a first response. Facilitators to urgent care-seeking behaviors included classic stroke symptoms, severe symptoms, sudden symptom onset, and high perceived level of emergency. Social support and knowledge/ability to call emergency medical services also emerged as facilitators of urgent care. Barriers to urgent care-seeking behaviors included atypical symptoms, mild symptoms, gradual symptom onset, and low perceived level of emergency. Conclusions: Individuals who experience strokes face a number of facilitators and barriers to seeking urgent care for their condition. Facilitators and barriers are associated with stroke symptoms and their personal environments. Additional study of barriers to stroke care is needed to adequately design interventions to reduce delays in seeking treatment. Keywords: care-seeking behaviors, delays, stroke, treatment
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Jamie Beckett, MS, is a Graduate Student, Department of Health Professions, Medical University of South Carolina, Charleston, SC.
Despite increased use of rTPA, patient treatmentseeking behaviors are one contributing factor to few patients arriving within the 3-hour window necessary to receive the benefit of rTPA (Ellis, Knapp, Gilbert, & Egede, 2013; Faiz, Sundseth, Thommessen, & Ronning, 2013; Hsia et al., 2011). Studies of treatment-seeking behaviors for stroke care have been primarily quantitative in nature and designed to identify associations between clinical and demographic variables and measures of the time from symptom onset to initiation of seeking treatment (Ellis et al., 2013; Faiz et al., 2013; Hsia et al., 2011). Less attention has been given to qualitative approaches designed to explore this phenomenon from the patient perspective. Therefore, the objective of this study was to qualitatively explore facilitators and barriers of urgent treatment-seeking stroke care in a sample of stroke survivors. Qualitative approaches can offer a unique perspective and novel insights into treatment-seeking behaviors for stroke care. The study was designed to identify both barriers of facilitators of urgent treatmentseeking behaviors for stroke-related care.
Jessica Barley, BS, is a Neurophysiologist, Department of Neurosciences, Clinical Neurophysiology, Medical University of South Carolina, Charleston, SC. The authors declare no conflicts of interest.
Methods Study Sample
he worldwide burden of stroke is substantial with ~15 million individuals experiencing strokes annually (World Health Organization, 2012). Many stroke survivors are left with long-term disability resulting in significant reductions in quality of life for both stroke survivors (Luengo-Fernandez et al., 2013) and their spouses (Tellier, Rochette, & Lefebvre, 2011). Evidence indicates that early intervention including the use of recombinant tissue plasminogen activator (rTPA) can significantly improve outcomes and reduce poststroke disability even among individuals experiencing a mild stroke if administered within the first 3 hours of symptom onset (Hassan et al., 2010). Consequently, delivering early treatment is a goal of clinicians providing treatment for acute stroke (Tong et al., 2012).
Questions or comments about this article may be directed to Charles Ellis, PhD, at [email protected]. He is an Associate Professor, Department of Communication Sciences & Disorders, East Carolina University, Greenville, NC.
Copyright B 2015 American Association of Neuroscience Nurses DOI: 10.1097/JNN.0000000000000134
A sample of patients was recruited who experienced a stroke and were being seen at outpatient clinics in
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
Volume 47
South Carolina and Georgia (USA). Participants for the project were stroke survivors who were able to provide information about their treatment-seeking behaviors after their stroke onset. Inclusion criteria were (a) age Q18 years; (b) history of stroke within the past 2 years, confirmed by magnetic resonance imaging or computed tomography scan report in the medical record; and (c) ability to communicate in English. Exclusion criteria were (a) coexisting neurologic conditions or progressive disease (e.g., dementia, Parkinson disease) and (b) severe stroke sequelae (e.g., aphasia, vision loss, or hearing loss) precluding completion of the study questionnaire. To identify stroke survivors, assistance was elicited from primary care providers. Primary care providers sent a letter to potential participants explaining the study. The letter provided information about the study, explained the study requirements, and clarified that only subjects meeting certain eligibility criteria would be able to participate in the study. Subjects agreeing to participate were seen at their usual treatment facility where they provided written consent to participate in the study. The study was approved by the local university institutional review board.
Procedure All participants completed a comprehensive survey in a quiet office. Participants were asked survey questions to obtain demographic information about the following: age, age at the time of stroke (stroke age), race, gender, education, income, marital status, insurance status, and regular doctor visits. They were also asked if they sought care for stroke within 3 hours of symptom onset. To explore facilitators and barriers to seeking treatment, the survey contained an open-ended question designed to examine stroke recognition. Participants were asked ‘‘When did you first recognize that you were having a stroke?’’ The question was asked in an open-ended fashion, and all responses were accepted regardless of short answer responses (e.g., the specific time the participant recognized the stroke), or detailed accounts of the stroke event were recorded. All responses were written verbatim. The last author (C. E.), who had previous experience conducting interviews with stroke survivors, interviewed all participants and collected all responses. Each participant was allowed to discuss his or her personal experience with stroke and, in particular, his or her approach to seeking treatment.
Data Management and Data Analysis Approach All written responses were saved in a common word processing format to facilitate analysis. A constructivist grounded theory approach was used to identify
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Although clinicians clearly understand the concept of early treatment for acute stroke, patients’ treatment-seeking behaviors are a factor in delays in treatment within the optimal 3-hour window. This study examines facilitators and barriers to treatment from patients’ perspectives. emerging themes from the responses to code the response data. Constructivist grounded theory is the process of identifying analytical categories as they emerge from the data (Glaser & Strauss, 1967). Constructivist grounded theory is used to develop hypotheses from the ground or research field upwards, but it is not used to test theory. Constant comparisons are completed, which result in emergent themes that are indexed and compared with the rest of the data to establish analytical categories. Analytical categories are further refined because additional data are collected until groups of key themes or categories are identified. The reduced themes and categories are then used to inform the developing theoretical analyses. Consistent with the above approach, a content analysis of the survey responses was conducted through multiple close readings of the transcriptions by the three authors. Each author generated an independent list of thematic categories and subcategories based on their review of the data. These themes were then further developed and ordered by the last author and reviewed and edited by the others. The authors then met in a consensus conference to discuss the categories, resolve questions, and refine the thematic categories. Once this was accomplished, the themes were again reviewed by all authors. After additional discussion to review and refine categories and resolve questions, the final thematic categories were completed, and higherorder categories were developed. The corresponding author (C. E.) has used this analytic approach to qualitative research.
Results The sample consisted of 64 ischemic stroke survivors who offered information about facilitators and barriers to seeking treatment for their stroke. The sample consisted of 54% who identified themselves as White,
Copyright © 2015 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
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96% were men, 63% were married, 63% had insurance, 73% reported incomes of G$25,000, and 55% had at least some college. The mean age of the sample was 63.3 years. All stroke survivors resided in their homes at the time of this study. Qualitative data that were associated with seeking stroke-related care within the first 3 hours after recognition of stroke symptom onset were considered a facilitator of seeking treatment, whereas information associated with seeking stroke-related care outside the first 3 hours was considered a barrier. Along those lines, three common themes emerged as facilitators and barriers to seeking treatment. However, it is important to note that the characteristics of the individual and their circumstances may contribute to the stroke event as a facilitator for one and a barrier in another. The three emerging themes were recognition of symptoms, social support, and knowledge of appropriate first response (see Table 1 for a summary of theme-related data).
barriers of treatment-seeking behaviors. Experiencing a stroke in the presence of others was a key facilitator of urgent stroke care. Participants offered evidence that having a loved one or even co-worker present increases the chances of 9-1-1 being called as a first response. In contrast, experiencing a stroke alone was a barrier to seeking urgent stroke care or call 9-1-1 as a first response particularly among those experiencing severe strokes. Similarly, taking care of a loved one or participating in important community social roles may serve as a barrier to urgent treatment-seeking behaviors. For example, the individual might ignore his or her minor stroke symptoms in favor of offering social support or carrying out a previous social role (i.e., spousal caregiving).
Theme 1: Recognition of Symptoms
Knowledge and ability to call emergency medical services (EMS) as an appropriate first response emerged as a key theme in understanding facilitators and barriers of treatment-seeking behaviors. Facilitators included knowledge of or ability to access EMS (9-1-1) whether by the patient or bystander/loved one. One patient reported experiencing a stroke while driving and being in the vicinity of a medical center. Because his symptoms were initially mild, he was able to drive to the nearby hospital. A best case scenario was reported among several participants: being in a healthcare facility at the time of stroke. In contrast, not calling EMS as a first response was a barrier to urgent stroke-related care. Some participants experienced immediate severe symptoms that precluded their ability to access EMS. Other participants reported calling a loved one or a healthcare clinic associated with the symptom they were experiencing as a first response that resulted in a delay in seeking treatment (DST). Unfortunately, lack of reliable transportation was reported as a contributor to DSTs. In such case, 9-1-1 was not perceived as the best first response.
Qualitative information related to the onset of their symptoms in relationship to their treatment-seeking behaviors was reported. Stroke-related symptoms included paralysis, nausea, slurred speech or inability to speak, loss of consciousness, loss of sensation, impaired coordination and weakness, headache, dizziness, and pain. Recognition of symptoms that were attributed to stroke or other health condition was influenced by type, number, severity, and type of onset (gradual vs. immediate). Symptoms that reportedly influenced more urgent treatment-seeking behaviors or ‘‘facilitators’’ were those that were (a) perceived as severe, (b) classic stroke symptoms, (c) of sudden onset, (d) perceived as an emergency even if not stroke, or (e) experienced transient ischemic attack (TIA) or stroke. A range of symptoms were reported that did not result in urgent treatment-seeking behaviors. Symptoms that did not encourage urgent treatment-seeking behaviors or ‘‘barriers’’ were those that were (a) perceived as mild or moderate, (b) atypical or perceived as not classic (nausea, headache, pain, etc.), (c) gradual or fluctuating onset, (d) present when awaking from sleep, (e) attributed to another health condition, or (f) experienced a diagnosed TIA and expected to clear. Interestingly, previous experience with TIA or mild stroke was both a barrier and facilitator of treatmentseeking behavior based on the type, complexity, and severity of the individual’s symptom profile during the initial neurological event.
Theme 2: Social Support Presence or absence of a family member, friend, or other individuals important to the stroke survivor’s prestroke lifestyle emerged as both facilitators and
Theme 3: Knowledge and Ability to Call Emergency Medical Services as a First Response
Discussion Qualitative data from this study suggest that a range of barriers and facilitators to urgent treatment-seeking behaviors for stroke care exist. Individuals who experience strokes are faced with a complex array of considerations based on their own understanding and perceptions of the stroke event itself. In addition, there are factors in their personal environments (social support and access to EMS) that also impact their treatmentseeking behaviors. These factors positively and negatively influence their decision-making process and ultimately contribute to their outcomes. The findings reported here
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TABLE 1.
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Facilitators and Barriers of Seeking Treatment Recognition of Symptoms
Facilitator & Severe intensity Body go blank; ‘‘legs would not move and could not talk.’’ (45 minutes) & Classic symptoms Preparing for work; ‘‘lost sensation and had weakness in hand’’ (G3 hours) & Sudden onset On the phone with sister; speech became slurred and arm started tingling (G3 hours) & Recognize symptoms as an emergency, even if not recognized as a stroke Did not initially realize as stroke; felt like the house was moving from left to right. Tried to get up but fell back to the floor; ‘‘eventually made way to the phone on my hands and knees’’ (G3 hours) Did not initially recognize as stroke; had trouble breathing and numbness on one side. ‘‘Wife brought to ER.’’ (G3 hours) Recognized symptoms at midnight; called 9-1-1 (G3 hours) & Previous experience with stroke or TIA Had previous mini-stroke before; ‘‘called 911.’’ (G3 hours)
Barrier & Mild to moderate or fluctuating in intensity Tried to work through symptoms and allow to pass (924 hours) & Atypical symptoms ‘‘Did not know anything was wrong until tried to write.’’ (924 hours) ‘‘Symptoms entirely different from previous stroke.’’ (2 days) ‘‘Had numbness for about 3 months and started having difficulty counting at work.’’ (924 hours) Patient passed out while driving (unsure how long delay) & Gradual/stepwise/fluctuating onset Fell but then felt better; knew something was wrong when wife picked up from a meeting. ‘‘Has no memory of the day past 12 pm.’’ (9Y12 hours) Leaned over and everything went blank but it went away. ‘‘Later that night lost strength in my hand and had slurred speech.’’ (12Y24 hours) & Poor knowledge of stroke and stroke symptoms Had a headache, dizziness, slurred speech, and pain in arm; ‘‘didn’t think it was a stroke.’’ (3 days) & Symptoms upon waking ‘‘Slept all day and woke up with facial weakness.’’ (9Y12 hours) & Attribute symptoms to another health condition or circumstance Weakness slowly progressed; ‘‘thought it was related to car accident previous month.’’ (924 hours) ‘‘Tingling in fingers but I decided it was because of the degenerative arthritis in neck.’’ (4 days) & Undiagnosed TIA or stroke that resolved spontaneously TIA twice before while driving, this time the symptoms did not clear (9Y12 hours) Social Support
Facilitator & With another person at onset
Barrier & Alone at onset
Could not get down the steps; ‘‘had to wait for someone ‘‘My wife noticed it and called 911.’’ (G3 hours) strong enough to assist before I could call 911’’ (9Y12 hours) Patient was at work Did not recognize; ‘‘recognized by co-worker who noticed & Responsibilities or commitments conflict with seeking treatment Wife critically ill; ‘‘made excuses for the deficits’’ (6Y9 hours) lip drooping, foot dragging and speech’’ (G3 hours) Symptoms present but decided to wait to teach Bible study & Able to consult with another person at onset later that day (9Y12 hours) Called daughter first who convinced was stroke; ‘‘drove to the hospital’’ (G3 hours) Knowledge and Ability to Call EMS Facilitator & Knowledge and first action to call 9-1-1
Barrier & Lack of reliable transportation
‘‘My wife noticed it and called 911.’’ (G3 hours) Call 9-1-1 as first action & Close proximity to medical facility On the interstate taking wife to the doctor. ‘‘Near a hospital at onset of symptoms.’’ (G3 hours) At the eye clinic at onset of symptoms (G3 hours)
Fell when getting out of bed and kept falling down. ‘‘Called immediately but waited 1.5 hrs for the ambulance to arrive.’’ (3Y6 hours) & First medical contact not 911 Wife called clinic and they instructed to just keep an eye on symptoms (12Y24 hours)
Note. EMS = emergency medical services; ER = emergency room; TIA = transient ischemic attack.
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and based on patient reports of their stroke event highlight the nature of barriers to stroke care and offer evidence of why only a small number of patients reach hospitals in a timely manner. For example, a recent study by Tong and colleagues reported that only a small percentage (25%) of patients reached the hospital in less than 3 hours from symptom onset (Tong et al., 2012). More importantly, these findings highlight the complex nature and contributors to treatment-seeking behaviors and the problems patients and practitioners experience when attempting to reduce delays in seeking stroke care and improving stroke outcomes. This study used a qualitative approach to obtain patient report of facilitators and barriers to treatment seeking for care rather than approaches to examine quantitative associations. However, the findings of this study are consistent with previous quantitative evidence related to seeking rapid treatment for stroke. For example, a comprehensive review by Moser and colleagues concluded that DST for stroke care can be influenced by patient-related social, cognitive, and emotional factors (Moser et al., 2006). In addition, facilitators reported in the included patients experiencing ‘‘classic’’ symptoms and whether the person experiencing a stroke knew someone who had also experienced from a stroke (Moser et al., 2006). Similarly, Faiz and colleagues found that, when those experiencing the stroke was living with someone or when the symptoms were perceived as severe, patients sought care more urgently (i.e., shorter delays; Faiz et al., 2013). The findings reported are congruent with barriers to seeking treatment. Moser and colleagues reported that DST was increased when the patient lived alone, had a nocturnal onset of symptoms, and was not located near a hospital at the time of onset (Moser et al., 2006). Hsia and colleagues also found that patients often did not recognize that they were having a stroke and that their initial beliefs held that their symptoms were not serious enough to seek treatment (Hsia et al., 2011). Finally, Faiz and colleagues noted that patients with stroke may have significant deficits such as aphasia, reduced consciousness, and cognitive impairment that prevent rapid treatment-seeking behaviors (Faiz et al., 2013). In addition, they found that previous stroke knowledge was not associated with more urgent decisions to seek treatment, and consequently, patients’ perceptions of their stroke knowledge may be inaccurate. Use of EMS and other transportation issues also emerged as key to treatment-seeking behaviors. Knowledge and immediate use of EMS at symptom onset along with being in close proximity to a hospital served as facilitators to urgent treatment-seeking behaviors. In contrast, individuals who decided to bypass EMS services and those who experienced delays in EMS arrival reported greater DSTs. In addition, those individuals
who decided to call their healthcare provider as a first response rather than EMS were more likely to report DST. Despite national campaigns to use EMS in the event of a stroke, previous studies have reported inconsistent use of EMS during stroke. Severity of symptoms has been associated with greater likelihood to use EMS (Faiz et al., 2013). Surprisingly, previous knowledge of stroke was not associated with urgent use (Faiz et al., 2013). The relationship between reported intent to use EMS and actual use is not clear (Hsia et al., 2011). Although findings reported here are interesting, this study is not without limitations. First, sample bias should be considered in the interpretation of the findings. For example, the data reported here emerged from a sample of stroke survivors from one region in the United States. Similarly, all participants were literate and spoke English, which are known barriers to treatmentseeking behaviors. Second, the sample was primarily male and does not account for known gender differences in DST for stroke care (de Ridder, Dirks, Niessen, & Dippel, 2013). Third, the sample was small, and the qualitative nature to the work limits its generalizability to the general stroke population. Fourth, although the data appear to adequately reflect their treatment-seeking behaviors, the potential for memory bias exists. Fifth, it is possible that the sample had less severe stroke and minimal poststroke consequences (aphasia, cognitive deficits, etc.). Similarly, the presence of mild strokes or those with gradual onset of symptoms may have influenced their treatment-seeking behaviors independently. Sixth, all participants were being seen by a primary care provider, thereby potentially offering greater educational opportunities to improve knowledge to barriers to treatment-seeking behaviors. The data reported here suggest that a range of factors contribute to DST for stroke care. These findings extend beyond traditional reports and offer a qualitative account of DST for stroke care from the patient and, subsequently, ‘‘stroke survivor’’ perspective. These findings further highlight the need for novel interventions to address the complex nature of DST for stroke and the highly variable characteristics of individuals who experience strokes.
Implications for Neuroscience Nurses These findings are highly relevant for neuroscience nurses because recently revised guidelines for the management of patients with stroke highlight the need for multidisciplinary care including nurses at all levels of care (trauma, critical care, acute care, inpatient rehabilitation) to limit the morbidity and mortality associated with stroke (Jauch et al., 2013). These guidelines emphasize stroke management ranging from acute diagnosis to early inpatient management and secondary
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prevention, all areas where neuroscience nurses play a critical role, and in particular, education. For example, neuroscience nurses play a critical role in educating individuals at risk for stroke and the approximately 185,000 Americans who will experience a recurrent stroke each year (Go et al., 2013). Therefore, understanding patient perspectives of barriers and facilitators of treatment-seeking behaviors can enhance current strategies to increase the urgency by which those experiencing a stroke seek care. Neuroscience nurses will need to continue this critical role of patient and family education along with their traditional roles in patient management (American Association of Neuroscience Nurses, 2008).
Acknowledgment Dr. Ellis was supported by a career development award (CDA# 07-012-3) from the Veterans Health Administration Health Services Research and Development program for this project.
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