A qualitative study of veterans’ mixed emotional reactions to receiving a PTSD diagnosis

Abstract

Many Veterans do not engage in needed mental health care. To address this problem, we need to understand these patients’ experiences from the very start of their care, which includes the assessment and diagnosis process and the communication of that diagnosis to the patient. The patient’s reaction to this process can set the tone for the patient’s relationship with the mental health system and their therapist, yet therapists often receive little training in how to most effectively provide a diagnosis to patients. Prior research has examined emotional reactions to receiving a psychotic spectrum diagnosis (Jones, 2004; Pitt, Kilbride, Welford, Nothard, & Morrison, 2009), which sometimes included both positive and negative reactions, but to the authors’ knowledge, no work has examined reactions to receiving a PTSD diagnosis. This qualitative study expands upon that work by examining common reactions to receipt of a PTSD diagnosis among low treatment engaging veterans, changes in that reaction over the first few weeks post-diagnosis, and differences among reactions across veterans who initiate vs. refuse evidence-based psychotherapy. Among 50 participants, self-reported reactions were categorized as positive, neutral, and negative. Positive reactions included validation, hope, and proactivity; neutral reactions included confusion, uncertainty, acceptance; and negative reactions included shock, denial, and fear of stigma. We discuss recommendations for therapists in providing diagnoses in a patient-centered, CBT-consistent way, to maximize the chances of engaging patients into mental health care.

Posttraumatic stress disorder (PTSD) is common in the general population (6.8% lifetime prevalence; Kessler, Berglund, Delmer, Jin, Merikangas, & Walters, 2005) and even more prevalent in veterans, with up to 14% of recently returning veterans being diagnosed (Tanielian & Jaycox, 2008). Low engagement in treatment is a common problem in the veteran population. For example, up to 50% of those receiving services in PTSD specialty clinics refuse psychotherapy for PTSD (e.g., Hundt, Harik, Thompson, Barrera, & Miles, 2017; Kehle-Forbes, Meis, Spoont, & Polusny, 2016). Even when veterans do start psychotherapy for PTSD, 30% to 50% of those in routine clinical practice drop out before completing therapy (e.g., Hundt et al., 2017; Mott, Mondragon, Hundt, Beason-Smith, Grady, & Teng, 2014).

To address this problem, we need to understand these patients’ experiences in care from the very start of their care, which includes the assessment and diagnosis process. Previous research has examined patients’ emotional reactions to receiving physical health diagnoses, such as hearing loss, cerebral palsy, or cancer, and found that reactions range from sadness, shock, and loss, to acceptance (Fernandez-Alcantara, et al., 2015; Light & Looi, 2011). In mental health, research on patients’ reactions to receiving diagnoses has focused almost exclusively on psychotic spectrum disorders, such as schizophrenia. This research has found that receipt of a diagnosis can facilitate acceptance to services, but can also lead to negative emotional reactions in patients such as fear of stigma, a sense of loss, hopelessness and fear about the future (Jones, 2004; Pitt, Kilbride, Welford, Nothard, & Morrison, 2009).

To the authors’ knowledge, no research has examined the reactions of patients to receiving other types of mental health diagnoses, including posttraumatic stress disorder (PTSD). The stigma associated with PTSD, particularly in military personnel and veterans, suggests that there might be complicated emotions surrounding the receipt of a PTSD diagnosis (Mittal, Drummond, Blevins, Curran, Corrigan, & Sullivan, 2013; Schreiber & McEnany, 2015). On the other hand, receipt of a PTSD diagnosis may be a hopeful event in that it could lead to access to services and/or service-connected disability payments at the VA. Understanding patients’ reactions to being diagnosed with PTSD may have important implications for increasing patient-centered care by helping providers understand what a patient might be experiencing emotionally during the assessment and diagnostic process. Understanding and addressing reactions to diagnosis receipt may mitigate negative reactions such as denial or hopelessness. Specifically, reaction to diagnosis receipt may be connected willingness to initiate psychotherapy, in that those with strong negative reactions may refuse treatments when offered.

The aim of this study is to use qualitative methods to explore and understand the emotional reactions of low treatment engaging Veterans to receiving a PTSD diagnosis and self-reported changes in that reaction over the several weeks post-diagnosis, and to compare these reactions between patients who refused evidence-based psychotherapies (EBP) and those who initiated and EBP but later dropped out. These groups were selected for study because of the need to examine factors that contribute to low engagement in care, and we predicted that negative reactions to receipt of a PTSD diagnosis would have a stronger impact upon initiation of care versus longer term retention in care, due to temporal proximity to diagnosis receipt.

Method

Participants

We recruited veterans from a VA PTSD Clinic. We selectively recruited for patients who either dropped out of either Prolonged Exposure (PE) or Cognitive Processing Therapy (CPT) or who did not engage in either therapy (approximately 70% of the clinic population). Participants included 50 veterans. Veterans were primarily male (40; 80%; see Table 1), and largely African American (27; 54%), Hispanic/Latino (12; 24%), or white (11; 22%), consistent with the geographic area from which the sample was recruited. Although many participants had multiple traumas, we identified the primary or index trauma as documented in the medical record by the PTSD assessor. The majority identified combat as their index trauma (25; 50%); military sexual trauma (11; 22%). Less common were other military or civilian traumas such as physical assaults, military training accidents, or vehicle accidents (14; 28%). Over half (26; 52%) received service connected disability for PTSD at the time of data collection. Approximately half (24; 48%) of the sample did not start an evidence-based treatment for PTSD; the remaining 26 (52%) dropped out of PE or CPT.

Table 1.

Veterans’ Demographic Characteristics

	# of Participants (N = 50)	%
Gender
Female	10	20%
Male	40	80%
Race/Ethnic
Non-Hispanic White	11	22%
African American	27	54%
Hispanic/Latino	12	24%
Mean Age	45.0 (SD = 13.6)
Trauma Type
Combat	25	50%
Military Sexual Assault	11	22%
Other military or civilian trauma	14	28%

Procedure

This study was approved by the local IRB and VA Research and Development Committee. From the VA’s electronic medical record, we obtained a list of patients completing an intake assessment into the VA PTSD Clinic between January, 2015 and May, 2016. A research assistant completed initial chart reviews (n = 501) to locate patients meeting inclusion criteria. For each patient deemed eligible by the research assistant, the first author verified in the medical record that these criteria were met. Patients were excluded if they did not have PTSD or PTSD was not their primary diagnosis (n = 133); for being treatment completers (n = 118); or for other reasons, such as being currently in treatment, having a dementia diagnosis, or being a prior patient of the first author (n = 77). An opt-out letter describing the study was sent to the remaining 175 patients. Five to seven days after sending the letter, a research assistant called patients. Of the patients who were sent letters, 29 (17%) declined participation, 49 (28%) could not be contacted, and 47 initially agreed but did not follow through with informed consent or attendance at the data collection appointment (n = 27%). Thus, 50 (29%) participants completed all steps of the research.

Participants completed informed consent and consent to audiorecord via mail prior to beginning telephone qualitative interviews. All interviews were audiorecorded and saved as password protected files on a HIPAA-compliant server. Interviews lasted a half hour to an hour (range = 26 to 65 minutes) and were conducted from February, 2016 to June, 2017. Interviews were conducted by the first author and another member of this research team with qualitative interview experience. The research team developed a qualitative interview guide that queried a broad range of topics about seeking care and experiences in care. Sample interview questions/probes included “Tell me about how you made the decision to seek mental health treatment.” and “When you were first diagnosed with PTSD, what was your reaction to hearing that diagnosis?” For the current manuscript, we only included codes relevant to the patient’s reaction to diagnosis, which typically encompassed responses to questions about treatment seeking, and the assessment and diagnosis process. We ended recruitment when we reached data saturation, defined a priori as the point when 3 consecutive transcripts within a given interview category rendered no new thematic concepts (Morse, 1995; Aita & McIlvain, 1999).

Data Analysis

Audiorecorded interviews were transcribed by a professional service. The first author and a master’s level research assistant trained in qualitative methods reviewed transcripts to determine initial codes using grounded theory. Grounded theory analysis facilitates the development of coding categories based on themes that emerge within data (Glaser & Strauss, 1967). We applied principles of grounded theory analysis in order to generate theory that best fits the data. This is a popular analytical approach in qualitative inquiry and has been recommended for use in qualitative psychology research (Ponterotto, 2005). A codebook with definitions of codes and example quotations was derived from consensus and used to guide final coding. Each transcript was coded by both coders; discrepancies were resolved through discussion. We linked quotations to multiple codes as appropriate and utilized a qualitative data software package for coding and analysis (Atlas.ti V6.0; Muhr, 2011).

Results

After coding, we categorized reactions as positive, neutral, and negative. Many participants had more than one reaction (mean = 1.83 reactions, SD = .95), and sometimes had a mixture of positive, neutral, and negative reactions, either at the same time, or sequentially in the immediate aftermath of receiving a diagnosis. Specifically, 5 (10%) of patients reported having both a positive and a negative reaction, 9 (18 %) reported having both a neutral and a negative reaction, 5 (10%) had both a neutral and a positive reaction, and 2 (6%) had a reaction in all three categories. These varied reactions suggest ambivalence and complicated feelings about their diagnosis. Participants often described a sequential series of reactions, or a process of accepting the diagnosis over time.

Positive reactions

Thirteen veterans (26% of the sample) had at least one positive reaction to receiving a PTSD diagnosis. The most common of these was feeling relieved or validated by having someone recognize that there was a problem, and having an appropriate label that helped them understand the problem (16%): “Relief. You could put a label on it so you’re not crazy, and you feel like you have a reason for why you do what you do” (Female veteran with physical assault trauma). Relatedly, some veterans (2; 4%) reported feeling hope, in that having a diagnosis implied that there was a prescribed treatment and an avenue to getting better: “I knew I was going to get some treatment” (Male veteran with OEF/OIF combat trauma). Some veterans (6; 12%) approached receiving a diagnosis in a more problem-focused, proactive way, in that they accepted the diagnosis without a strong emotional reaction but merely as the necessary first step in a process to getting better: “I was like ‘OK yep I got it. So what’re we gonna do?’” (Male veteran with OEF/OIF combat trauma).

Neutral reactions

A large number (32; 64% of the sample) had at least one neutral reaction to receiving a diagnosis. The most common of these was that they already intuitively knew or strongly suspected they had the diagnosis (14; 28%): “Given my experience in the military, I kind of figured that was what was up…yeah, of course I have PTSD” (Female veteran with OEF/OIF combat and sexual trauma). Some (3; 6%) mentioned seeing the symptoms of PTSD in fellow veterans, which facilitated recognizing the issue in themselves: “I have friends that have PTSD diagnosis and (sigh) you know we were all going through similar things…so I figured that’s what it was” (Male veteran with OEF/OIF combat trauma).

For 10 veterans (20% of the sample), the reaction was confusion due to a lack of knowledge or understanding of the disorder. The two most common reasons for this confusion were lack of knowledge about PTSD: “I was like, ‘What the hell is PTSD?’” (Male veteran with workplace accident trauma) and beliefs that PTSD was a diagnosis only given to combat veterans: “PTSD is for the people that got blown up in wars” (Male veteran with civilian trauma/police work). Confusion was more common in veterans who had non-combat traumas, whereas combat survivors were more likely to be educated about PTSD and aware that their symptoms reflected probable PTSD. Several veterans mentioned that the process of coming to acceptance often took several weeks, often after an initial negative reaction or confusion. Acceptance was facilitated by efforts to educate themselves about PTSD and clear up their confusion after receiving the diagnosis: “After doing my little research, I kind of saw the symptoms on there and said, ‘Okay, well, you know this is what I’ve got’” (Male veteran with OEF/OIF combat trauma).

Also common was acceptance of the diagnosis (11; 22%). For some, this happened immediately upon hearing the diagnosis: “I think that I needed to hear it out loud for me to believe it” (Female veteran with OEF/OIF combat trauma). For others, acceptance was grudgingly won because: “I had no other choice but to accept it …I had pretty much 9 out of 10 things from that list and pretty much did all of the things that he was describing” (Male veteran with OEF/OIF combat trauma).

A less common reaction (2; 4%) was uncertainty, which we defined as not being sure about their emotional reaction to the diagnosis: “I didn’t know how to react so I was more hesitant” (Female veteran with intimate partner violence trauma), as the veteran struggled to process what this diagnosis meant for them and how they felt about it.

Negative Reactions

Also common (21; 42% of the sample) were negative reactions. The most common of these (11; 22%) was denial, skepticism, or rejection of the diagnosis, primarily because of negative associations with the idea of having a mental health condition: “What are you talking about? I’m not crazy” (Male veteran with military accident trauma). Some veterans in this category (3; 6% of the sample) described the process of gradually coming to terms with the idea after the initial shock: “It probably took me 6 weeks to be okay with it” (Female veteran with sexual trauma).

Many veterans (9; 18%) described their primary reaction as shock, in that they experienced this diagnosis as unpleasantly sudden, unexpected, or surprising: “I was so very shocked” (female veteran with military sexual trauma). Unlike Veterans in the ‘confusion’ category, these Veterans reported knowing what PTSD was and sometimes were even aware they exhibited PTSD symptoms, nevertheless, they had not previously recognized or admitted that label applied to them personally. Some reported not expecting to hear this diagnosis at all, but others reported that despite being shocked, they on some level expected to hear this news, and thus shock was mixed with a neutral reaction: “I was shocked but not surprised” (Female veteran with intimate partner violence trauma).

Relatively common was fear of the stigma of this diagnosis (5; 10%). Veterans reported concerns that their military or civilian careers would be affected, or that other people would judge them or fear them: “It’s a scary thing when you first get diagnosed with something that you know people are going to look at you different” (Female veteran with noncombat military trauma). Although fear that a PTSD diagnosis could affect their career was primarily an issue for participants who were diagnosed while still in the military, some participants diagnosed post-military were also worried that stigma could affect their civilian careers, in that employers might see them as ‘unstable.’

An uncommon reaction (1; 2% of the sample) was anger. This veteran reported anger primarily at the delay in receipt of her diagnosis: “I was mad because I didn’t know what (was causing my problems), and I suffered all of those years, and my family suffered and I didn’t know…I got really angry and sad” (Female veteran with military sexual trauma).

Finally, we examined how reactions differed across treatment engagement groups. The sample consisted of relatively equal groups of patients who refused an evidence-based psychotherapy and those who dropped out after beginning an evidence-based psychotherapy. The groups did not differ in the frequency of neutral reactions (65% vs. 67%) or negative reactions (42% vs. 42%). However, the group refusing evidence-based psychotherapies appeared to have more positive reactions to diagnosis receipt than the group who dropped out of treatment (38% vs. 15%).

Discussion

Low treatment-engaging veterans receiving a PTSD diagnosis often had complicated reactions, mixed feelings, and concerns about their diagnosis. Neutral reactions, including confusion and acceptance, were the most commonly reported, but these were often mixed with negative reactions, such as denial and fear of stigma, and positive reactions, such as feeling relief or validation. These reactions often changed over time after the initial shock, and patients described the process of coming to terms with their diagnosis and what it could mean for them. Veterans who initiated evidence-based psychotherapy did not differ from refusers on the frequency of negative or neutral reactions, although patients who refused evidence-based psychotherapies were more likely to have a positive reaction to receipt of a PTSD diagnosis than those who began but later dropped out of psychotherapy. Although the reasons for this are unclear, it may be that those who are distressed by and do not see any positives in diagnosis receipt may be more motivated to seek evidence-based psychotherapies to help them recover.

Overall, given that concerns about the stigma of a PTSD diagnosis and negative beliefs about PTSD may be barriers to initiating and engaging in psychotherapy (e.g., Sayer, Friedemann-Sanchez, Spoont, Murdoch, Parker, Chiros, & Rosenheck, 2009; Stecker, Shiner, Watts, Jones, & Conner, 2013), alterations to the assessment and diagnosis process may help increase veteran engagement in mental health treatment. These results suggest that practicing clinicians should allocate time within the appointment so that a diagnosis does not come at the last part of a session and patients have sufficient time to process their emotions in session. Otherwise, patients may leave the session confused, anxious, or upset, and such emotions and their related negative cognitions may interfere with subsequent treatment engagement. For example, a patient who rejects their diagnosis is not likely to return for future appointments to treat a diagnosis they do not believe they have, and thus it is essential to address concerns about their diagnosis immediately after providing it.

Given that confusion was a common theme, labeling a patient with a diagnosis should be part of a larger conversation including psychoeducation, with accurate information about the symptoms and possibly related functional impairments of their diagnosis. Some patients respond positively to statistics about recovery rates based upon clinical research data; others to anecdotes from a provider’s clinical experiences drawn from prior patients (Hundt, Mott, Miles, Arney, Cully, & Stanley, 2015). Given that the most common positive reaction was feeling validated or relieved that there is an explanation for their symptoms and behaviors, a provider may capitalize on this by focusing on validating explanations for the patient’s current difficulties. For example, a higher level of validation (Linehan, 1993) involves pointing out the logical connections between the details of the past traumatic events and the current difficulties the patient is experiencing, such as connections between an interpersonal trauma involving a breach of trust and difficulties with trust that interferes with current relationships. This can also be an opportunity to model an explanatory model consistent with the evidence-based treatments for PTSD, such as: “Of course you’d have X current difficulty, because your traumatic event taught you Y lesson (or belief) and so you behave in Z way.” Similarly, in order to encourage positive reactions, such as hope, psychoeducation should provide accurate data on the success rates and expected improvements from evidence based treatments—in the case of PTSD, that up to 70% of Veterans receiving the treatments Prolonged Exposure (PE; Foa, Hembree, & Rothbaum, 2007) and Cognitive Processing Therapy (CPT; Resick, Monson, & Chard, 2016) experience clinically meaningful change maintained over years (Steenkamp, Litz, Hoge, & Marmar, 2015).

Given that many of the reactions patients reported appeared to represent possible cognitive distortions, such as “My career is over” or “You’re saying I’m crazy,” a therapist might also use cognitive techniques to challenge these with Socratic questioning, such as, “What does ‘crazy’ mean to you? Does that mean all people with a mental health diagnosis are ‘crazy’? Do you know anyone with a mental health diagnosis who you don’t consider to be ‘crazy’?” This may be an ideal time to introduce a cognitive-behavioral style, both to socialize the patient to therapy, and to prevent dysfunctional automatic thoughts about their diagnosis from producing treatment interfering behaviors. A patient’s reaction to their diagnosis may also give providers information about the patient’s typical coping strategies (for example, denial vs. proactivity) and core beliefs that can be helpful in forming an initial case conceptualization. For example, a patient with the reaction ‘you’re saying I’m crazy’ may turn out to have core beliefs like ‘others will reject me if they know the real me.’ These recommendations are in line with ‘therapeutic assessment’ (Finn & Kamphuis, 2006), a technique in which the therapist uses the assessment and diagnostic feedback as an intervention in and of itself, as well as to build rapport and increase patient understanding of the conceptualization of the problem.

Another helpful tool in the diagnosis conversation might be motivational interviewing (MI; Miller & Rollnick, 2012). An MI-consistent manner of offering patients information about a diagnosis may be to ask, “Would you mind if I shared some information with you about your diagnosis?” An MI stance may also be helpful in addressing negative reactions to hearing a diagnosis, in that it includes reflections, validation, open-ended exploration, and addressing discord between patient and provider. For example, when a patient disagrees with or denies a PTSD diagnosis, instead of adopting an ‘expert’ stance and insisting on the accuracy of the diagnosis, an MI therapist might say: “So you’re pointing out some downsides of accepting that you have PTSD, in that it might make people judge you, and that really worries you. What might be the upsides of accepting that you have PTSD, or ways in which that might be helpful?” The MI stance also includes acceptance and normalizing of ambivalence, and ambivalence about a PTSD diagnosis appears to be very common in this population. Providers should be aware that for some patients, accepting their mental health diagnosis is a process that unfolds over time, that cannot be rushed, and it is important to check back in with patient about this over time as treatment proceeds.

Limitations and Future Directions

Limitations of this study are the inclusion of veterans from only one Veterans Affairs hospital, and inclusion of veterans selected for disengagement in evidence-based psychotherapies. Future research should examine reaction to diagnosis across a broader cross section of veterans, given that it is possible that reaction to diagnosis may have been more negative among this subgroup. Additionally, participants were retrospectively reporting their reaction to diagnosis, which may have been months or years earlier. Future research should examine reactions to diagnosis prospectively, examine predictors of reactions, and examine whether negative vs. positive emotional reactions to diagnosis predict treatment engagement and outcomes. If this is the case, it may be that interventions to increase treatment engagement should start with the initial mental health contacts, including the assessment and diagnosis process. Although this study focuses exclusively on PTSD in veterans, future research might examine whether concerns reported by participants might also apply to civilians or to patients accepting other mental health diagnoses, such as depression or a personality disorder. Future research should examine the impact of different ways of communicating about diagnoses to determine the most effective ways to communicate a first diagnosis and to mitigate negative reactions and thus increase engagement in reluctant patients. Given that Veterans diagnosed with PTSD can receive financial compensation for that disability, some Veterans may desire to have a PTSD diagnosis. Although no patients in this study mentioned receiving disability payments as a possible reason to desire a diagnosis, this may have been due to social desirability factors and future research should examine connections between secondary gain and reactions to diagnosis.

Conclusion

Overall, many mental health providers receive little explicit training in how to deliver a diagnosis or to have a conversation about what that means with their patients. Diagnosis can easily become routine for mental health providers, but for patients the moment of receiving a diagnosis is often a monumental one. Discussing diagnosis skillfully can help mental health providers give more patient-centered care that helps patients through the process of accepting their diagnosis and engaging in treatment.

Table 2.

Common Themes in Reactions to Receiving Diagnosis

Theme	% Endorsing Theme	% of EBP Dropouts Endorsing	% of EBP Refusers Endorsing
Positive Reactions	26%	15%	38%
Validation	16%
Hope	4%
Proactivity	12%
Neutral Reactions	64%	65%	67%
Already ‘knew’ they had it	28%
Confusion	20%
Acceptance	22%
Uncertain how to feel	4%
Negative Reactions	42%	42%	42%
Denial	22%
Shock	18%
Fear of stigma	10%
Anger	2%

Note: EBP = evidence-based psychotherapies.