PATIENTS’ EXPERIENCES WITH VEHICLE COLLISION TO INFORM THE DEVELOPMENT OF CLINICAL PRACTICE GUIDELINES: A NARRATIVE INQUIRY Gail M. Lindsay, RN, PhD, a Silvano A. Mior, DC, PhD, b Pierre Côté, DC, PhD, c Linda J. Carroll, PhD, d and

Heather M. Shearer, DC, MSc e ABSTRACT

Objective: The purpose of this narrative inquiry was to explore the experiences of persons who were injured in traffic collisions and seek their recommendations for the development of clinical practice guideline (CPG) for the management of minor traffic injuries. Methods: Patients receiving care for traffic injuries were recruited from 4 clinics in Ontario, Canada resulting in 11 adult participants (5 men, 6 women). Eight were injured while driving cars, 1 was injured on a motorcycle, 2 were pedestrians, and none caused the collision. Using narrative inquiry methodology, initial interviews were audiotaped, and follow-up interviews were held within 2 weeks to extend the story of experience created from the first interview. Narrative plotlines across the 11 stories were identified, and a composite story inclusive of all recommendations was developed by the authors. The research findings and composite narrative were used to inform the CPG Expert Panel in the development of new CPGs. Results: Four recommended directions were identified from the narrative inquiry process and applied. First, terminology that caused stigma was a concern. This resulted in modified language (“injured persons”) being adopted by the Expert Panel, and a new nomenclature categorizing layers of injury was identified. Second, participants valued being engaged as partners with health care practitioners. This resulted in inclusion of shared decision-making as a foundational recommendation connecting CPGs and care planning. Third, emotional distress was recognized as a factor in recovery. Therefore, the importance of early detection and the ongoing evaluation of risk factors for delayed recovery were included in all CPGs. Fourth, participants shared that they were unfamiliar with the health care system and insurance industry before their accident. Thus, repeatedly orienting injured persons to the system was advised. Conclusion: A narrative inquiry of 11 patients’ experiences with traffic collision and their recommendations for clinical guidelines informed the Ontario Protocol for Traffic Injury Management Collaboration in the development of new Minor Injury Guidelines. The values and findings of the qualitative inquiry were interwoven into each clinical pathway and embedded within the final guideline report submitted to government. (J Manipulative Physiol Ther 2016;xx:1-9.e2) Key indexing terms: Accidents, Traffic; Neck Pain; Whiplash Injuries; Outcome and Process Assessment (Health Care), Personal Narratives as Topic; Qualitative Research

hiplash and neck pain and associated disorders affect more than 80% of individuals with minor injuries after a motor vehicle collision. 1 Many who are injured seek treatment by attempting to

W a

Associate Professor, Faculty of Health Sciences, University of Ontario Institute of Technology, Oshawa, ON, Canada. b Professor, Research Scientist, Graduate Education and Research, Canadian Memorial Chiropractic College, Toronto, ON, Canada; Adjunct Professor, Faculty of Health Sciences, University of Ontario Institute of Technology, ON, Canada. c Canada Research Chair in Disability Prevention and Rehabilitation, and Associate Professor, Faculty of Health Sciences, University of Ontario Institute of Technology, Oshawa, ON, Canada. d Professor, School of Public Health, University of Alberta, Edmonton, AB, Canada. e Clinical Research Manager, UOIT-CMCC Centre for the Study of Disability Prevention and Rehabilitation, Faculty of

navigate the management corridor lined with various health care, insurance, legal, and regulatory systems. In Ontario, Canada, the government regulates the management of treatment for injuries following traffic collisions. 2

Health Sciences, University of Ontario Institute of Technology, Oshawa, ON, Canada. Submit requests for reprints to: Gail M. Lindsay, RN, PhD, Associate Professor, University of Ontario Institute of Technology, Faculty of Health Sciences, UA 3055, 2000 Simcoe St N, Oshawa ON Canada L1H 7K4. (e-mail: [email protected]). Paper submitted May 9, 2015; in revised form September 8, 2015; accepted September 18, 2015. 0161-4754/$36.00 Copyright © 2015 by National University of Health Sciences. All rights reserved. http://dx.doi.org/10.1016/j.jmpt.2016.01.005

2

Lindsay et al Narrative Inquiry

Currently, such injuries are classified as “minor,” “noncatastrophic,” or “catastrophic.” In 2011, the Ontario government called for the development of a new evidence-based clinical practice guideline (CPG) for the management of minor traffic injuries. The Ontario Protocol for Traffic Injury Management (OPTIMa) Collaboration 3 was established to develop the new Minor Injury Guidelines (MIGs). The OPTIMa Collaboration included a multidisciplinary guideline expert panel of clinicians, academics and scientists, a consumer advocate, a retired judge, automobile insurance industry experts, and a patient liaison. Well-accepted standardized wording and criteria were used by the OPTIMa Collaboration for conducting research and developing clinical guidelines for people injured in traffic collisions. Systematic reviews and the translation of the scientific evidence into evidence-based recommendations were augmented by a qualitative inquiry which includes patient perspectives as per guideline development standards. 4–9 Collecting, understanding, and integrating persons’ experiences in the development of clinical practice guidelines are necessary to ensure the relevance and implementation of recommendations. In the United Kingdom, the National Institute for Clinical Excellence states that an essential value of “a high quality guideline” is the “embod(iment) of values that are generally held by the population.” 10 This expectation of patient involvement is explicitly reflected in the Appraisal of Guidelines, Research and Evaluation (AGREE II) instrument which is used to assess the quality of a clinical guideline. 4 Similarly, the Ontario Health Technology Advisory Committee (OHTAC), which is a government-appointed committee mandated to develop health-related recommendations, requires that social and ethical values and the patient’s experience be considered when developing recommendations for medical technologies. 11 The OPTIMa Collaboration adapted the OHTAC framework by incorporating 3 sources of information in developing its recommendations. 12 It first critically reviewed published clinical practice guidelines for the management of traffic injuries. Secondly, it conducted best-evidence synthesis of scientific literature, screening approximately 235,000 abstracts and summarizing their results in 43 new systematic reviews. Thirdly, to address the framework’s social and ethical constructs and to ensure that patients’ experiences were considered during the entire process of clinical guideline development, a qualitative narrative inquiry needed to be conducted to reveal the unique narratives of Ontarians who had sustained minor injuries in traffic collisions. This type of research would help to capture evidence-informed qualities that include scientific best evidence, clinical judgment, and patient preference. 13 To develop this study, we conceptualized that the inclusion of patient experiences within a CPG process structured around best-evidence synthesis could be captured within the theoretical stance of pragmatism.

Journal of Manipulative and Physiological Therapeutics Month 2015

Pragmatism supports a methodology that enables the mixing of research designs to address complex issues. 14 Combining evidence from qualitative inquiry and systematic reviews is contextualized within a research paradigm 15 that “(a) partners with the philosophy of pragmatism; (b) follows the logic of mixed methods research; (c) relies on qualitative and quantitative viewpoints, data collection, analysis, and inference techniques combined; and (d) is cognizant, appreciative, and inclusive of local and broader sociopolitical realities, resources, and needs.” 16 We conceptualized that pragmatism was one way to study human experience. 17–19 The aim of narrative inquiry is to explore experience, 20 and it is grounded in Dewey’s 21 philosophy of pragmatism that posits that experience is education; hence, it was the basis of our selected qualitative method. Narrative inquiry complements the examination of best evidence by providing a perspective through the lens of patient experience during the construction of CPG recommendations. The overarching approach taken by the OPTIMa Collaboration was combining a purist perspective (ie, systematic reviews) with a moderating perspective (ie, qualitative study of patient views) to develop CPG recommendations. Given that our inquiry phenomenon was injured persons’ experience after a traffic collision and their recommended directions for a new CPG, we posed 2 questions: (1) What is injured persons’ experience with health care following traffic collision–caused injury? (2) What would injured persons want a group of experts (health care professionals, scientists, insurers, public representatives, and policy makers) to know about their experience as they make decisions about the development of guidelines for the management of minor injuries after collisions? Thus, the purpose of this qualitative study was to explore the experiences and describe the recommendations of injured persons to inform the development of a new evidenceinformed CPG for the management of common traffic injuries in Ontario, Canada.

METHOD We used the qualitative methodology of narrative inquiry to understand the experience of people injured in a traffic collision and treated under the current MIGs. Narrative inquiry was initially developed from the perspective of higher education 20 and more recently has been brought into the study of health care. 22–24 We chose narrative inquiry because it addresses an individual’s experience with collision and can be constructed into stories that could reveal recommended directions for CPG development. The stories were all-inclusive and based on reconstruction of experience over time, considering individual and social dimensions of experience and discerning new choices for participants’ lives. 25,26 The data were

Journal of Manipulative and Physiological Therapeutics Volume xx, Number

analyzed in consideration of personal, practical, professional, and social justifications for our research. 27 We began our narrative inquiry with the stance that a person has the right to have a role in creating the knowledge used to make decisions about his or her health, 6,28,29 a value congruent with standards for evidence-informed CPG development. 11 Our study included all consolidated criteria for reporting interview-based qualitative research. 30

Participant Recruitment The critical appraisal of the literature and evidence synthesis was completed in the academic years of 2012-2014. The qualitative inquiry was undertaken in 2013-2014. Inclusion criteria were injured persons who were older than 18 years; spoke English; received health care for minor traffic injuries within 3 months of a traffic collision; and were treated in clinics across the Greater Toronto Area and the regions of Niagara, Kingston, and Sudbury. According to the MIG, 2 a minor injury is defined as a sprain, strain, whiplash-associated disorder, contusion, abrasion, laceration or subluxation, and any clinically associated sequelae. Participants could be in treatment or discharged. Recruitment occurred in partnership with a large Ontario rehabilitation provider. The rehabilitation provider created master lists of all injured persons who met our inclusion criteria in each of the 4 clinics. Each wave of recruitment included 8 people, who were randomly selected using a random number generator, from each of the 4 participating clinics. Each selected patient received a letter from the rehabilitation provider and documents explaining the study and a consent form for information and signature. Three waves of 32 recruitment packages were mailed between August and October 2013. In addition, a study poster was displayed in each of the 4 clinics concurrent with the third mailing. People wishing to participate in the research contacted the patient liaison and lead researcher (GL). The research team was blinded to who was eligible to participate and the clinics did not know who volunteered, thereby protecting participant anonymity and confidentiality. We did not use categories to recruit participants, such as type of injury or demographic characteristics. All participants provided signed informed consent and were compensated for their time, travel, and parking costs ($50 per interview). All who volunteered were accepted as participants, and no one dropped out of the study. The research was approved by the University of Ontario Institute of Technology Research Ethics Board (12-124). Creating a composite narrative ensured that no participant, provider, or clinic was identifiable; however, all narrative resonances across the stories of experience were included.

Participants We enrolled 11 participants: 2 from the Kingston area, 3 from the Niagara Region, 2 from the Sudbury area, and 4

Lindsay et al Narrative Inquiry

from the Greater Toronto Area of the province of Ontario. The participants included 5 men (35-73 years of age) and 6 women (39-67 years of age). Eight were injured while driving cars, 1 was injured on a motorcycle, 2 were pedestrians, and none caused the collision. Nine were in treatment, 1 was discharged, and 1 declined further clinic visits. The majority (7) were employed; the others were students, retired, or unemployed. Injuries included whiplash-associated disorders, concussion, headaches, swollen joints, bruising on torso, and jaw and limb pain. In keeping with our mixed-methods approach and the differences in sample sizes for each method of inquiry, we recognize that “qualitative researchers value the deep understanding permitted by information rich cases and quantitative researchers value the generalizations to larger populations permitted by random and statistically representative samples.” 31

Data Analysis Initial interviews of a maximum of 1 hour in length were conducted by the lead researcher with individual participants. The meeting was audiotaped at the clinic or at a community location chosen by the participant. At the first interview, informed consent was obtained, and compensation was paid. The lead researcher asked the research question to begin exploring the experience with collision and care. Question probes were uniformly offered to invite participants to elaborate on their responses (Fig 1). Because no other studies exist in this domain, our questions were open-ended, and we purposefully did not direct the answers. The question probes were reviewed in advance by the research team, who was composed of health professionals conducting critical appraisal of the literature. The questions were not pretested. The open-ended questions invited sharing of experience that surfaced what mattered to our participants. We were interested in knowing what would be important to participants, and the interviewer asked questions for clarification and to ensure full description of the experience with collision, its aftermath, and participantrecommended directions for new guidelines. At the first interview, several participants requested additional information about the researcher’s accountability by asking if she was employed by the clinic, an insurance company, or government. The researcher confirmed that she was a nurse, employed as a university faculty member, and that shared information would be anonymized. The lead researcher listened to the tapes within 24 hours of each interview to create verbatim transcripts. Using the research questions as a template, a story for each participant with a beginning, middle, and end was constructed by the lead researcher to capture each participant’s experiences and recommended directions for new guidelines. Participants received their story by email or postal mail within 5 days of the initial meeting.

3

4

Lindsay et al Narrative Inquiry

1. What happened (the traffic collision)? 2. What is happening now as a result of the collision? 3. What practitioners have you had contact with in the healthcare, insurance and regulatory systems? 4. What is helping you to heal/recover? 5. What is hindering your recovery? 6. How were you involved in decision-making about the care you received [shared or profession/patient determined]? 7. How were you involved in decision-making in the processing and/or closure of your claim (healthcare/automobile)? 8. Is there anything else you would like to tell me?

Fig 1. Question probes for participant interviews.

The second interview was held within 2 weeks from the first, for the purpose of extending the story of experience created from the first interview. 32 The second meeting lasted up to half an hour and was completed by telephone, which was audiotaped, and in one instance by email. Compensation was mailed to the participants. No participant changed the substance of their story; all suggestions by participants for modification were for clarification purposes. All participants completed the initial and follow-up interviews between August and November 2013. Recruitment was stopped in November 2013 after saturation was reached (ie, no new information emerged about recommended directions as perceived by the qualitative team). 33 Narrative plotlines that resonated across the 11 stories 34 were identified with regard to experience and recommended directions to the CPG. As with the individual stories, the structure of the composite narrative reflected answers to the research questions, illuminating the collision experience, its aftermath, and recommended directions. Considering the demographics (Table 1) of the participants, 2 people were featured in the composite. A woman narrated her own experience and presented the differing experience of a man who attended the same clinic for care. In this way, the composite captures the recommended directions of a variety of the participants. All of the information in the composite narrative was based on the interview data and resultant stories. 35–37 We approached this qualitative research intending to meet the evaluative criteria of transparency, transferability, and considering the holism of participants in the context of their lives, not categories that segment people. 25,38 Our narrative inquiry approach aimed to draw the reader into reflecting on his or her own experience when reading the composite narrative. We aimed for the composite narrative to be authentic, plausible, coherent, and transferable to other people and situations. 39,40 We ensured the rigor and trustworthiness of the findings, including the recommended directions, through a data audit conducted during the data analysis. The qualitative research team (article authors) read

Journal of Manipulative and Physiological Therapeutics Month 2015

paired transcripts and participant stories for congruence and accuracy to create a data audit trail. The research team of health professionals, involved in the critical appraisal of the literature, participated in a workshop where the stories were reviewed to identify narrative plotlines across the stories that answered our 2 overarching research questions. The total research team ensured that the composite narrative was therefore accurately expressive of our data. The experiences of participants and the recommended directions from their perspective as injured persons were referenced during the entire guideline development process.

RESULTS The narrative composite includes both a compilation of combined experiences and the recommended directions from participants. The composite narrative is found in Appendix A. The following are recommendations that guided the OPTIMa Collaboration with the development of the MIG.

Recommendation Development Informed by Qualitative Research The process of analysis, through construction of individual stories to the composite narrative, enabled the patient liaison and lead researcher to inform the discussion at each stage of guideline development. Draft recommendations were constructed by the OPTIMa Collaboration Recommendation Subcommittee and the Policy Subcommittee. Based on the adapted OHTAC framework, the qualitative study results informed discussions of the social and ethical values during the drafting of recommendations related to each systematically reviewed intervention. Finally, the study findings, including the patients’ recommended directions, informed recommendation development related discussions during the consensus-based Expert Panel meetings. Thus, the summative composite narrative, constructed from the stories of injured persons’ experiences, was uniquely combined with the quantitative best-evidence syntheses from systematic reviews 41–43 to inform the final CPG recommendations. Recommended directions from injured persons, as presented in the composite narrative, are highlighted here with excerpts from the interviews. Recommended direction #1: importance of terminology. Our assumption is that terminology reflects how people are conceptualized and therefore how relationships are constructed. The terminology of minor injury used in current legislation and guideline was identified by participants as a problem. This is highlighted in the following participant quote: “The title of the guideline makes you feel this is just minor. It’s like you are not credible. I don’t compare myself to those who are almost killed, but there are many ways to be injured.” (Participant 1).

Journal of Manipulative and Physiological Therapeutics Volume xx, Number

Lindsay et al Narrative Inquiry

Table 1. Participant Demographics and Their Description of Collision and Injuries (N = 11) Characteristic

Description

Participants (n)

Injured in cars (8); pedestrians hit by cars (2); injured in a motorcycle collision (1); in treatment (9); discharged (1); declined treatment (1) Men (5) (range, 35-73 y); women (6) (range, 39-67 y) Primary school (2); grade 13 to postsecondary (9) Employed (7); retired (2); unemployed/job-seeking (1); student (1) All occurred early May to mid-September 2013. Hit by other cars (7 in cars, 2 pedestrians); car hit by deer (1); slid on road oil (1) Whiplash, concussion, headaches, swollen joints, bruising on torso, temporomandibular joint/temporomandibular dysfunction, limb pain

Sex and age Education Employment Time and description of collision Nature of injury

Our participants used terminology that illuminated their perspective; for example, they spoke of their accidents when asked about the collision. They did not feel responsible for what happened to them because no participant caused the collision. Also, when participants received health care, they self-identified as a patient, but when discussing with the insurance company and what happened, they self-identified as victim. How injured persons view themselves is revealed in their terminology. This view is consistent with the stigma patients involved in traffic collisions can experience. This stigma creates an image where patients perceive being viewed negatively or as inferior. 14 As a consequence of the important distinction in terminology identified in the narrative, the language of injured persons was adopted by the Expert Panel, and a new nomenclature categorizing layers of injury identified alphanumerically (ie, 1a, 1b, 2) was proposed in the new guideline. 12

Recommended direction #2: partnerships and shared decision-making. Participants drew attention to the importance of developing a partnership between themselves, as experts in their own lives, and their health care providers, who have clinical knowledge and expertise. In a negotiated partnership, both contribute in determining the path to recovery. The quality of this partnership is a key relational component in shared decision-making and consistent with patient-centered clinical care. 9,29 Developing a quality relationship is necessary for clinicians to learn from patient experiences and gain their trust. A relationship can be improved if the health care provider offers explanations, choices, and anticipatory teaching about treatment options in a manner that is understood by the patient. 44 This is fundamental in alleviating a patient’s uncertainty about recovery. The findings of our qualitative inquiry confirm the work of others who emphasized the importance of the patient-provider relationship. 45–47 Participants in our study valued the therapeutic relationship with their health care providers because it provided a foundation for a person’s hope, expectations for recovery, and implementation of home-based treatment. Providers have a unique opportunity to invite patients to verbalize their full collision experience. In doing so, they may enable the patient to make sense of what has occurred

while simultaneously giving the provider a more holistic awareness of the impact of the collision, such as going beyond the physical injury to explore activities of daily living and emotional importance. It appeared helpful to share with injured persons the usual course toward recovery, confirm that flashbacks about the accident are a common occurrence, and assess signs and symptoms of depression and anxiety. “The physio explains things to me and is attentive. It really helps me with the whole accident, it makes me knowledgeable … My physio is compassionate and supportive. She did a thorough assessment including the psychological part; she asked me about eating, sleeping, how I was doing. I was impressed and what she recommended suits me. Sharing my experience is good.” (Participant 2). This perspective of the importance of education and reassurance noted by injured persons in their clinical management can be considered within the framework of the health belief model. 48 Designing educational interventions framed within this model supports both the findings from our qualitative study and our systematic reviews suggesting that such educational programs are an effective adjunct therapy to commonly used conservative interventions in improving recovery in patients with neck pain and associated disorders (NAD) and whiplash associated disorders (WAD). 49 Care that was provided in a positive, patient-centered approach has been associated with higher satisfaction, greater enablement, reduced symptom burden, and lower rates of referrals. 50 Thus, considering the evidence through the injured person’s lens supports the need for clinical guidelines to be more patient-centered and highlights the importance of shared decision-making, patient-provider communication, and engaging patients as active participants. This echoes the suggestions by Greenhalgh et al 51 for ethical and individualized evidencebased health care that is based on shared decision-making with patients “through meaningful conversations.” As a result, we specified the inclusion of education and reassurance as a common and foundational recommendation connecting all our CPGs and care pathways. Recommended direction #3: impact of emotional distress. The injured persons in this study described themselves as having been emotionally distressed by the collision and the injury.

5

6

Lindsay et al Narrative Inquiry

They also talked about the distress experienced by their family, especially those also in the vehicle during the collision. They talked about having flashbacks of the collision and feelings of anxiety and depression. Participants described the positive impact of telling their story to someone outside their family. As noted by others, there may be value in being able to fully recount a traumatic experience to non–family members after a critical incident. 52,53 The need for support is underscored by patients’ uncertainty about the future as noted in the following 2 quotes: “My life is not the same anymore. I am a different person than before. I’m not broke in pieces but I need help.” (Participant 3). “It is exhausting rehashing the accident just after it happened. There is a psychological impact too. For me to get behind the wheel, I was having flashbacks.” (Participant 4). Similar to other research, 54 our participants were concerned with the impact of daily stressors associated with their injury. They suggested that care offered by practitioners who know about their life context, daily stressors, and values would be more likely to be accepted and followed. For example, “The key was getting to the clinic and getting care right away. My chiropractor went through things slowly, teaching me as she goes. She listened, not just telling me what to do, and offered alternatives. She also coached me about talking with the surgeon about the amount of Advil I’m taking and possible stomach issues. She’s proactive.” (Participant 5). Participants stressed the need for emotional and psychological support for people who are involved in collisions. But they also noted that resources should be made available so that they would not have to choose between emotional support and physical care. For example, injured persons need to understand the expected course of recovery and that flashbacks about the collision were common. They also should be monitored for signs and symptoms of emotional distress, as exemplified in the following comment: “There is no post-trauma counselling available for people after a collision. I was very worried about my younger son who wouldn’t leave my side for several days. I kept him home from school and we rested together. He was not physically hurt but he was so afraid of what could have happened and that I was alright. People should be offered counselling.” (Participant 6). It is not clear how people cope with the uncertainty that results from a traffic collision. The need for emotional support is worth addressing in future research to determine its potential to decrease the risk of acute stress developing into a chronic pain or posttrauma syndrome requiring more intensive

Journal of Manipulative and Physiological Therapeutics Month 2015

intervention. 55,56 Our findings identified a gap in the current guidelines and were used to inform changes to the CPG. In addition, participant views supported results from our systematic reviews on postcollision psychological prognostic factors associated with recovery from neck pain and associated disorders and whiplash associated disorders. 57–59 The combined relevance of these findings resulted in each clinical pathway emphasizing the importance of early detection and the ongoing evaluation of risk factors (eg, yellow flags) for delayed recovery in all of the CPGs.

Recommended direction #4: understanding the system. The majority of participants in our study had little or no experience with the insurance industry before their collision. They were unfamiliar with the gatekeeper role the insurance company plays in treatment options. “It’s very traumatic and the person may never have had much to do with the health care system so perhaps want more involvement and someone to explain things.” (Participant 7). “I’m frustrated. I’m doing all the paperwork, all the running around … If I hadn’t been pushing, been my own advocate, what would have happened? People shouldn’t have to worry about all that stuff.” (Participant 8). Injured persons pointed out the need for insurers to understand and consider claimants’ health care and vehicle repair preferences, especially in the face of unfamiliarity with how the system works postcollision. For example, “The advice I’d give is for the insurance company to give more choices. I already have a relationship where I go for physio and the dealership where I take my car. They know me and my vehicle so why can’t I continue to use them?” (Participant 6). Injured persons stated that they wanted to be provided with information, options, and choices from insurance companies. This information was shared with insurance industry stakeholders who were part of the Expert Panel to potentially inform revisions to current claimant-related policies and procedures.

DISCUSSION This study highlights a unique application of the pragmatic stance of narrative inquiry where systematic reviews are combined with a qualitative study of patient views 14 to develop CPG recommendations. By using the moderating position of patient views, the injured persons’ narrative played an active role in the development and approval of CPG recommendations. The injured persons’ emergent directions permeated the recommendations discourse and informed the framework for resultant CPGs.

Journal of Manipulative and Physiological Therapeutics Volume xx, Number

Congruent with the OHTAC Decision Determinants Recommendation Subcommittee, we “recognized the importance of other forms of evidence including contextsensitive evidence.” 11 The inclusion of injured persons’ experiences and recommended directions in the development of clinical guidelines provides context-sensitive evidence that complements the context-free evidence of systematic reviews and randomized clinical trial. Clinical guideline development that incorporates a qualitative component provides an opportunity for health care providers and insurers to have a better relationship with the injured person. Along with a more in-depth knowledge of circumstances of the injury, this knowledge may lead to improved understanding of factors impacting recovery by “personal engagement with the circumstances, personally using instruments [new CPG], and then observing the effects.” 13 These recommended directions cannot be enacted without considering the context of the patient’s life. Clinical practice guidelines must be relevant to the clinical reality of practitioners and patients and acknowledge that recovery is a dynamic process. Thinking with stories, in contrast to thinking about stories, 60 is an invitation to think with the composite narrative and to dwell in the experience of injured persons. It provides an opportunity to theorize on the impact of such experience not only on guideline development but also on our definition of evidence 61–64 and on our relationships with injured persons. This study demonstrates the value and social importance of exploring the experience of injured persons as complementary to systematic reviews in developing evidence-informed CPGs.

Clinical Relevance Caring for injured persons requires the establishment of relationships that are grounded in the life context of the patient. To do so, health care providers should ask about the patient’s recovery expectations and health goals and inquire about the injured person’s knowledge of the systems (eg, health and insurance). Moreover, health care providers should ensure that patients understand their injury, its natural course, and the available evidence-based treatments. The patient-provider relationship needs to be continually reassessed and adjusted based on the injured person’s daily life. Therefore, understanding injured persons’ experiences is important to ensure the relevance, applicability, and uptake of CPGs, as well as in making policy decisions.

Limitations

A limitation of the study is that no one who was “at fault” in a collision was included in our research. Subsequent research could explore the experience of people who cause a collision and also the need for emotional support, regardless of fault, after collision. Only people with “minor injuries” were included in this study; thus, other types of injuries may have resulted in a

Lindsay et al Narrative Inquiry

different set of concerns and composite narrative. Other limitations include that questions used to interview patients were not pretested and could have influenced the outcome. We did develop the questions in an iterative fashion to ensure consistency with the study aims and made no modifications during the course of the study. As with any qualitative research, authors’ opinions, viewpoints, and participation are an essential part of the process and could have had an influence in the final narrative product and recommendations. We mitigated these concerns by having the team review transcripts and reach consensus to ensure the composite represented key findings. The findings of this study may not necessarily apply to people in other countries and of other languages and cultures.

CONCLUSION This narrative inquiry process informed the new MIGs. We brought the participant-generated recommended directions to bear on each new recommendation for caregivers. This process influenced the terminology, role of patientprovider relationships, importance of shared decisionmaking, interventions, importance of advice and education, emotional support, and foundational principle of patient choice. The values and findings of the qualitative inquiry were interwoven into each clinical pathway and embedded within the final guideline report submitted to government.

FUNDING SOURCES

AND

CONFLICTS

OF INTEREST

Funding was provided by the Canada Research Chairs program. Dr Pierre Côté is the Canada Research Chair in Disability Prevention and Rehabilitation. This study was also supported by the Ontario Ministry of Finance and the Financial Services Commission of Ontario (RFP# no.: OSS_00267175). The funding agency was not involved in the collection of data, data analysis, interpretation of data, or drafting of the manuscript. Centric Health assisted with sampling participants. Centric Health was not involved in the design, conduct, and analysis of the study or the preparation of the manuscript. Pierre Côté has previously received funding from Ontario Ministry of Finance; consulting for the Canadian Chiropractic Protective Association; speaking and/or teaching arrangements for the National Judicial Institute and Société des Médecins Experts du Quebec; trips/travel European Spine Society; Board of Directors: European Spine Society; Grants: Aviva Canada; fellowship support: Canada Research Chair Program– Canadian Institutes of Health Research. No other conflicts were reported for this study.

CONTRIBUTORSHIP INFORMATION Concept development (provided idea for the research): P.C., G.L.

7

8

Lindsay et al Narrative Inquiry

Design (planned the methods to generate the results): G.L., S.M. Supervision (provided oversight, responsible for organization and implementation, writing of the manuscript): G.L., P.C. Data collection/processing (responsible for experiments, patient management, organization, or reporting data: G.L. Analysis/interpretation (responsible for statistical analysis, evaluation, and presentation of the results): G.L., S.M., P.C., L.C., H.S. Literature search (performed the literature search): G.L., S.M. Writing (responsible for writing a substantive part of the manuscript): G.L., S.M., P.C., L.C., H.S. Critical review (revised manuscript for intellectual content; this does not relate to spelling and grammar checking): G.L., S.M., P.C., L.C., H.S.

Practical Applications • This study showed that the process of narrative inquiry can be used to explore experiences of injured persons to identify recommended directions for care. • Patients expressed concerns about terminology, relationships, choice, and emotional support. • Findings from this inquiry help to inform the development of clinical practice guidelines for care following vehicle collisions.

ACKNOWLEDGMENT The authors thank the following people for their contribution to this inquiry: Arthur Ameis, Carlo Ammendolia, Robert Brison, Doug Gross, Murray Krahn, Patrick Loisel, Margareta Nordin, Mike Paulden, Kristi Randhawa, Roger Salhany, John Stapleton, Deborah Sutton, Anne Taylor-Vaisey, Sharanya Varatharajan, Jessica Wong, and Hainan Yu.

REFERENCES 1. Cassidy JD, Carroll LJ, Côté P, Lemstra M, Berglund A, Nygren A. Effect of eliminating compensation for pain and suffering on the outcome of insurance claims for whiplash injury. N Engl J Med 2000;342:1179-86. 2. Financial Services Commission of Ontario. Minor injury guideline. Superintendent's guideline no. 02/10. Toronto, ON: FSCO; 2010.

Journal of Manipulative and Physiological Therapeutics Month 2015

3. Côté P. Development of a minor injury treatment protocol. Ontario Ministry of Finance–Financial Services Commission of Ontario OSS_00267175. Toronto: FSCO; 2012. 4. Brouwers MC, Kho ME, Browman GP, et al. AGREE II: advancing guideline development, reporting and evaluation in health care. Can Med Assoc J 2010;182:E839-42. 5. Brouwers MC, Kho ME, Browman GP, et al. Development of the AGREE II, part 2: assessment of validity of items and tools to support application. Can Med Assoc J 2010;182:E472-8. 6. Davis DA, Goldman JB, Palda VA. Canadian Medical Association handbook on clinical practice guidelines. Ottawa: CMA; 2007. 7. Kmietowicz Z. Campaign is launched to make patients the focus of evidence based medicine. BMJ 2014;349:4443. 8. National Institute for Health and Care Excellence. The guidelines manual. 1.4 The development process for clinical guidelines. London: NICE; 2014 [http://publications.nice.org. uk/the-guidelines-manual-pmg6#the-development-processfor-clinical-guidelines. Accessed 2014 Jan 28.]. 9. O'Flynn N, Staniszewska S. National Institute for Health and Clinical Excellence. Guideline Development Group. Improving the experience of care for people using NHS services: summary of NICE guidance. BMJ 2012;344:d6422. 10. Rawlins MD, Culyer AJ. National Institute for Clinical Excellence and its value judgments. BMJ 2004;329:224-7. 11. Johnson AP, Sikich NJ, Evans G, et al. Health technology assessment: a comprehensive framework for evidence-based recommendations in Ontario. Int J Technol Assess Health Care 2009;25:141-50. 12. Côté P. Ontario Ministry of Finance–Financial Services Commission of Ontario OSS_00267175: development of a minor injury treatment protocol; 2012-2014. 13. Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ 1996;312:71-2. 14. Bostick GP, Brown CA, Carroll LJ, Gross DP. If they can put a man on the moon, they should be able to fix a neck injury: a mixed-method study characterizing and explaining pain beliefs about WAD. Disabil Rehabil 2012;34:1617-32. 15. Tashakkori A, Creswell J. The new era of mixed methods. J Mixed Methods Res 2007;1:3-7. 16. Johnson R, Onwuegbuzie A, Turner L. Toward a definition of mixed methods research. J Mixed Methods Res 2007;1: 112-33. 17. Dewey J. The quest for certainty: a study of the relation of knowledge and action. New York: Minton, Balch & Co; 1929. 18. Feilzer M. Doing mixed methods research pragmatically: implications for the rediscovery of pragmatism as a research paradigm. J Mixed Methods Res 2010;4:6-16. 19. Morgan D. Pragmatism as a paradigm for social research. Qual Inq 2014;20:1045-53. 20. Connelly FM, Clandinin DJ. Stories of experience and narrative inquiry. Educ Res 1990;19:2-14. 21. Dewey J. Experience and education. New York: Macmillan; 1938. 22. Chan EA, Schwind JK. Two nurse-teachers reflect on acquiring their nursing identity. Reflect Pract 2006;7:303-14. 23. Lindsay GM. Patterns of inquiry: curriculum as life experience. Nurs Sci Q 2011;23:237-44. 24. Schwind JK, Cameron D, Franks J, Graham C, Robinson T. Engaging in narrative reflective process to fine tune Self-asInstrument of Care. Reflect Pract 2012;13:223-35. 25. Clandinin DJ, Connelly FM. Narrative inquiry: experience and story in qualitative research. San Francisco, CA: JosseyBass; 2000.

Journal of Manipulative and Physiological Therapeutics Volume xx, Number

26. Lindsay G. Constructing a nursing identity: reflecting on and reconstructing experience. Reflect Pract 2006;7:59-72. 27. Clandinin D, Pushor D, Orr A. Navigating sites for narrative inquiry. J Teach Educ 2007;58:21-35. 28. Heron J. Co-operative inquiry. London: Sage; 1996. 29. Mior S. Patients perceptions of the primary care characteristics in a model of interprofessional patient-centred collaboration between chiropractors and physicians. . PhD thesisToronto: Health Policy Management and Evaluation, University of Toronto; 2010. 30. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19:349-57. 31. Sandelowski M. Focus on qualitative methods sample size in qualitative research. Res Nurs Health 1995;18:179-83. 32. Newman M. Health as expanding consciousness. 2d ed. Boston: Jones & Bartlett; 1994. 33. Guest G, Bunce A, Johnson L. How many interviews are enough? Field Methods 2006;18:59-82. 34. Clandinin DJ. Engaging in narrative inquiry. Walnut Creek, CA: Left Coast Press; 2013. 35. He MF. A river forever flowing: cross-cultural lives and identities in the multicultural landscape. Greenwich, CT: Information Age Publishing; 2000. 36. Lindsay G, Cross N, Ives-Baine L. Narratives of NICU nurses: experience with end-of-life care. Illn Crisis Loss 2012;20:239-53. 37. Lindsay G, Schwind JK. Arts-informed narrative inquiry into nurse-teachers’ legacy for the next generation. Reflect Pract 2014:1-11. 38. Butler-Kisber L. Qualitative inquiry: thematic, narrative and arts-informed perspectives. Los Angeles CA: Sage; 2010. 39. Denzin NK, Linbcoln YS. Introduction: the discipline and practice of qualitative research. The SAGE handbook of qualitative research. 4th ed. Los Angeles CA: Sage; 2011. p. 1-19. 40. Ziebland S. Narrative interviewing. In: Ziebland S, Coulter A, Calabrese J, Locock L, editors. Understanding and using health experiences: improving patient care. Oxford, UK: Oxford University Press; 2013. p. 38-48. 41. Varatharajan S, Côté P, Shearer HM, et al. Are work disability prevention interventions effective for the management of neck pain or upper extremity disorders? A systematic review by the Ontario Protocol for Traffic Injury Management (OPTIMa) collaboration. J Occup Rehabil 2014;24:692-708. 42. Wong JJ, Côté P, Shearer HM, et al. Clinical practice guidelines for the management of conditions related to traffic collisions: a systematic review by the OPTIMa Collaboration. Disabil Rehabil 2015;37:471-89. 43. Yu H, Côté P, Shearer HM, et al. Effectiveness of passive physical modalities for shoulder pain: systematic review by the Ontario Protocol for Traffic Injury Management Collaboration. Phys Ther 2015;95:306-18. 44. Richmond T, Guo W, Ackerson T, et al. The effect of postinjury depression on quality of life following minor injury. J Nurs Scholarsh 2014;46:116-24. 45. Russell G, Nicol P. “I've broken my neck or something!” The general practice experience of whiplash. Fam Pract 2009;26: 15-20. 46. Ciechanowski PS, Katon WJ, Russo JE, Walker EA. The patientprovider relationship: attachment theory and adherence to treatment in diabetes. Am J Psychiatry 2001;158:29-35.

Lindsay et al Narrative Inquiry

47. Fox S, Chesla C. Living with chronic illness: a phenomenological study of the health effects of the patient-provider relationship. J Am Acad Nurse Pract 2008;20:109-17. 48. Bellamy R. An introduction to patient education: theory and practice. Med Teach 2004;26:359-65. 49. Yu H, Côté P, Southerst D, et al. Does structured patient education improve the recovery and clinical outcomes of patients with neck pain? A systematic review from the Ontario Protocol for Traffic Injury Management (OPTIMa) Collaboration. Spine J 2014 http://dx.doi.org/10.1016/j.spinee.2014.03. 039 http://dx.doi.org/10.1186/1747-5341-8-18. 50. Little P, Everitt H, Williamson I, et al. Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. BMJ 2001;323: 908-11. 51. Greenhalgh T, Howick J, Maskrey N. Evidence Based Medicine Renaissance Group. Evidence based medicine: a movement in crisis? BMJ 2014;13:g3725. 52. Bisson JI. Single-session early psychological interventions following traumatic events. Clin Psychol Rev 2003;23: 481-99. 53. Irving P, Long A. Critical incident stress debriefing following traumatic life experiences. J Psychiatry Ment Health Nurs 2001;8:7-14. 54. Bring A, Soderlund A, Wasteson E, Asenlöf P. Daily stressors in patients with acute whiplash associated disorders. Disabil Rehabil 2012;34:783-9. 55. Carroll LJ, Liu Y, Holm LW, Cassidy JD, Côté P. Pain-related emotions in early stages of recovery in whiplash-associated disorders: their presence, intensity, and association with pain recovery. Psychosom Med 2011;73:708-15. 56. Wicksell RK, Ahlqvist J, Bring A, Melin L, Olsson GL. Can exposure and acceptance strategies improve functioning and life satisfaction in people with chronic pain and whiplashassociated disorders (WAD)? A randomized controlled trial. Cogn Behav Ther 2008;37:169-82. 57. Buitenhuis J, de Jong PJ, Jaspers JP, Groothoff JW. Relationship between posttraumatic stress disorder symptoms and the course of whiplash complaints. J Psychosom Res 2006;61:681-9. 58. Carroll LJ, Liu Y, Holm LW, Cassidy JD, Côté P. Pain-related emotions in early stages of recovery in whiplash-associated disorders: their presence, intensity, and association with pain recovery. Psychosom Med 2011;73:708-75. 59. Kongsted A, Bendix T, Qerama E, et al. Acute stress response and recovery after whiplash injuries. A one-year prospective study. Eur J Pain 2008;12:455-63. 60. Frank A. The wounded storyteller: body, illness and ethics. Chicago: The University of Chicago Press; 1995. 61. Epstein RM, Street RL. The values and value of patientcentered care. Ann Fam Med 2011;9:100-3. 62. Nevo I, Slonim-Nevo V. The myth of evidence-based practice: towards evidence-informed practice. Br J Soc Work 2011;41: 1176-97. 63. Oxman AD, Lavis JN, Lewin S, Fretheim A. SUPPORT Tools for evidence-informed health Policymaking (STP) 1: what is evidence-informed policymaking? Health Res Policy Syst 2009;7(Suppl 1):S1. 64. Van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development. Health Care Anal 2009;17:198-216.

9

9.e1

Lindsay et al Narrative Inquiry

APPENDIX A. THE

Journal of Manipulative and Physiological Therapeutics Month 2015

COMPOSITE NARRATIVE DEVELOPED

FROM THE INTERVIEW TRANSCRIPTS OF

11

PEOPLE WHO

EXPERIENCED TRAFFIC INJURIES.

“I’m not broken in pieces, but I want my life back” by Suzanne

You wanted to know about my experience in a motor vehicle collision—I call it my accident. It wasn’t my fault and it wasn’t minor! I’m a 53-year-old retail manager and what happened to me is still a shock. Three months ago, I was driving my husband to work and a big car drove into the side of us. I had the right of way and it plowed into the passenger side of the car, right behind the front door—there was glass all over my husband. I’ll never forget the eyes of the lady in the other car; she was turning left and her eyes were the size of saucers. She told me that she had seen us and panicked, hitting the gas instead of the brake pedal. I called the police and they arrived quickly. They asked about an ambulance but I just wanted to tell them what happened and go home. I was in shock so I didn’t feel any pain right away—is that from adrenalin? That same morning, I called my insurance company and told them about the pain in my neck and my back. The headache started a week after the accident. The insurance company told me what clinic to go to for help. At the clinic, I met Timothy. He and I compare notes when our appointments for physio overlap. Timothy is almost the same age as me and he was laid off work last year. He’s back at school which is tough. When you graduate from college and go to work, you don’t imagine retraining in midlife. I’ve been seeing my physiotherapist over the past 10 weeks. At first, my whiplash and lower back were treated twice a week by physio and once a week I had massage and now it’s once a week for physio. My neck feels like it is in a vise and I can’t do much at home for very long. I can grocery shop but have to get help to put the groceries away as I am too tired and sore after one outing a day on top of my workday. It’s getting better but it’s slow. I met with a lawyer once and he told me unless I was maimed or killed, there isn’t any point in a lawsuit, so I’m not pursuing it. Timothy’s accident was different. He was out walking when the car hit him. Unbelievable! The driver didn’t even stop. Good thing Tim rolled out of the way so he wasn’t hurt worse. He’s been hurt before in sports so this reaggravated his shoulder. He’s funny—he tells me “they say walking is good for you.” My reaction was different. I cried because my husband was in the car and we both could have been hurt way worse. My driving is different now. I was always careful but this really woke me up. I check the rearview mirror constantly and am so vigilant. Tim doesn’t know what else he could have done given the light was green and he had the right of way. Tim thought the driver of the car had seen him but maybe the driver wasn’t really looking at Tim because he was on the phone. What helps with my healing is the physiotherapist at the clinic and time. My physio uses massage, laser, acupuncture, and ultrasound on me. I know it makes a difference. She talks to

me about what she is doing and what she is looking for. We try procedures to see the impact they have. She gave me diagrams of the exercises for me to do each day at home. It is so helpful when she asks me about myself, how I’m sleeping, how the exercises are working. As soon as I sleep, I wake up scared but she told me those flashbacks would ease with time. That emotional support makes all the difference. I don’t have much experience with the health care system other than going to my family doctor. I don’t know what to expect and the physio helps me see the progress and that I am getting better. When I told her about my walking route, she gave me exercises to help with the hills and I want to get back to that soon. What happens at my appointments has changed over the past few months, new exercises, different equipment. She even coached me about talking with my doctor about the amount of Advil I am taking and stomach issues. My massage therapist was helping me too—after a treatment, even my posture is better. Tim’s experience at the clinic is different because he gets mad when the physio asks what he wants. He says she should know what he needs—she’s the expert. He was annoyed when he had to deal with 3 physios because of summer vacations. He liked the heat and the TENS machine but is frustrated by how his body is letting him down. It doesn’t help that his accident made his past injuries flare again. My family doctor has been great. He talks with me about how I’m feeling and gives me a prescription for pain pills. He said to use Advil and heat pads whenever the pain gets bad. I was also referred to an Occupational Therapist but I don’t know why. Tim said she would come to my workplace to see if I need any help or equipment. What I need is help at home. The OT told Tim to use a hot pack after doing stuff at home because there isn’t enough money to offer equipment with a minor injury. According to guidelines for minor injury, they can determine what is needed physically but not emotionally. I don’t compare myself to those who are almost killed, but there are many ways to be injured. I had an old back injury so that doesn’t help with my recovery now. Why do they call what happened to us minor? It feels like we are judged and like our pain isn’t credible. The accident was shocking when it happened. The car insurance company called and said “you are ok” and I was so numb, I said I am ok. Also, my situation is different because my daughter has a disability. Now we’re thinking about what to do. We are getting older. When I spoke to the insurance company about home support, since I couldn’t lift anything, I asked if there would be services for us at home. I’m not sure and will talk with them again. At least our children weren’t in the car with us. The paperwork I am doing to keep track of appointments and forms is daunting. I even need a letter for my employer. The money we got for our car gave us something not as good as what we had. There was life left in my old car! The insurance company also makes you go where they want you to go for health care. If I want to go somewhere else, somewhere we had heard about or knew someone who goes there, we would have to go through a nightmare of paperwork. I might have to pay out of pocket and get reimbursed later.

Journal of Manipulative and Physiological Therapeutics Volume xx, Number

One thing that hinders my recovery is my stubbornness, trying to get back to the level of activity I had, trying not to baby myself and to pay attention to pain. I do things now that I know put more stress on my back but I don’t know how to do it any other way. There’s lots of sitting at the computer and standing in the store. I quilt so that involves sitting and leaning over. I’m not willing to give it up for a bit of pain. I don’t want to see myself as disabled—but I might have to get used to a new “me.” I also love swimming and this motivates me to take care of myself. I know my limitations so I pace myself. If I was running the system, I would make some changes. I think people should not have to use their personal resources before insurance benefits kick in. What if I have something else develop from the accident in 6 months or I trip at work? I’ll have no extended health care benefits left. I really want some psychological support for me and my family. There is a lot of impact on all of us from the accident. I know insurance companies worry about fraud but from my perspective, all they worry about is money. It would be good to have a mediator between me and the insurance company because it is hard to know what to ask when you are in shock. I think they should make a stronger statement about if you are feeling any discomfort, call back. Some people don’t like to bother others or don’t know what to ask for. The insurance adjuster puts the squeeze on someone already traumatized to use the insurer’s preferred list, suggesting to do otherwise will take longer. I like where I go for physio and fortunately they accepted my continuing to see her. It’s important to start treatment right away. I wonder if they would subsidize me to take time off work so I could go to my appointments and do the exercises at home more often. It’s a lot to run my house, do my work and take care of my family. The advice I’d give to government and experts is for the insurance company to give more choices. They have so much control and incentive over where you go for health care and for your car.

Lindsay et al Narrative Inquiry

Caregivers at the clinic need to be really good at what they do. Tim thought his therapist talked better than she actually cared for him. She was moving soon and was late for their appointments sometimes. He felt she was dismissive when he described his pain. I really like my physio and think Tim’s experience is not the norm. Even though he was on foot, he had to work through his car insurance. His paperwork was delayed once and he missed about a month of visits to the clinic and now he is discharged. He said that talking isn’t the problem, it’s the walking! Once a case is closed, there is no follow-up. What if there is a flare-up in 6 months or emotional issues come up later? I am concerned for the future and I’m the victim here. I understand that a claim can only go in if people are physically injured and that isn’t right. There is no compensation for missing school so Tim is lucky he is alright before classes start. I missed less than a week of work so that wasn’t an issue for me. My physio is flexible about our appointments so I can go during my lunch hour. I would like compensation for my time and gas money coming to appointments. I have hired someone to help with the housework and the garden—shouldn’t that be paid? The accident has had a major impact on my daily life and on my family. I don’t know what the future holds—is this pain chronic? Will I be back to where I was with my daily life? What if I’m not better within 3 months? Sharing my experience is good. It makes it real. It reminds me that it is important to do my exercises and to take care of myself. I want to live and don’t want my injury to become a chronic problem. When I talk with my family, it isn’t in this detail. They just care that I survived. I don’t know what the future holds or what to expect. I guess because they are paying for it, the insurance companies have this control over you. I lost my car, had to go through physio, all the insurance crap. It was an upheaval in my life; for the woman who hit me, it was a hiccup. You’re never the same in lots of ways.

9.e2