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Young C, Sinclair A, Black C, et al. Internet-Delivered Cognitive Behavioural Therapy for Post-Traumatic Stress Disorder: A Health Technology Assessment [Internet]. Ottawa (ON): Canadian Agency for Drugs and Technologies in Health; 2019 Dec. (CADTH Optimal Use Report, No. 9.3b.)

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Internet-Delivered Cognitive Behavioural Therapy for Post-Traumatic Stress Disorder: A Health Technology Assessment [Internet].

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Perspectives and Experiences Review

This section addresses the following research question:

  • How do patients, their families, and their health care providers experience engaging with treatments for post-traumatic stress disorder?

Exploration of this question was guided by reflection on how understandings of PTSD and experiences with various treatment options might influence expectations toward iCBT as a treatment option.

Study Design

We conducted a rapid qualitative review of empirical studies examining ways in which people living with PTSD understand their condition and subsequently navigate the health care spaces afforded them. Studies that include the perspectives of family members and health care providers were also included. Following an iterative approach consistent with the inductive principles of qualitative research, the a priori planned methods51 were actively refined and amended at a few stages. In particular, while a research question was established a priori, given the scarcity of qualitative evidence on experiences with iCBT for the treatment of PTSD, and to ensure a sufficient evidence base to inform the decision problem, our research question was modified and the scope of this review accordingly expanded to include experiences with any form of treatment for PTSD.

Literature Search Methods

The literature search was performed by an information specialist, using a peer-reviewed search strategy according to the Peer Review of Electronic Search Strategies (PRESS) checklist (https://www.cadth.ca/resources/finding-evidence/press).

Information related to patient preferences was identified by searching the following bibliographic databases: MEDLINE All (1946‒) and PsycINFO (1806‒) via Ovid, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) via EBSCO, and PubMed. The search strategy was comprised of both controlled vocabulary, such as the National Library of Medicine’s MeSH, and keywords. The main search concepts were iCBT and PTSD.

Methodological filters were applied to limit retrieval to qualitative studies. Retrieval was also limited to English- or French-language documents published since January 1, 2008. The search was completed on May 23, 2019.

As the initial search found no literature focused specifically on iCBT, a second search was conducted on July 17, 2019. The main search concepts were CBT and PTSD. Methodological filters were applied to limit retrieval to qualitative studies. Retrieval was also limited to English- or French-language documents published since January 1, 2014. Regular alerts updated both searches until the publication of the final report.

Grey literature (literature that is not commercially published) was identified by searching sources listed in relevant sections of the Grey Matters: A Practical Tool For Searching Health-Related Grey Literature checklist (https://www.cadth.ca/grey-matters),43 which includes the websites of regulatory agencies, HTA agencies, clinical guideline repositories, systematic review repositories, patient-related groups, and professional associations. Google was used to search for additional internet-based materials. These searches were supplemented by reviewing the bibliographies of key papers and through contacts with appropriate experts and industry, as appropriate. The complete search strategy is presented in Appendix 1.

Eligibility Criteria

Studies published in English or French that used qualitative data collection (e.g., interviews or participant observation) and analysis methods to explore the experiences of people living with a diagnosis of PTSD, or their families or health care providers, or about engaging with treatment of PTSD, were eligible. While iCBT is the focus of this review, studies exploring experiences with other therapeutic interventions to treat PTSD were eligible with the aim to capture analytical concepts specifically relevant to our research question.

Theses and dissertations, data presented in abstract form only, commentaries, case reports, and editorials were excluded. In addition, studies focused primarily on the experiences of people living with comorbidities (e.g., depression, substance use, anxiety) rather than PTSD were excluded.

Screening and Selecting Studies for Inclusion

Titles and abstracts of retrieved citations from both literature searches were screened by one reviewer in Endnote according to the final eligibility criteria (Table 13). The full text of all potentially eligible citations were retrieved and subsequently screened by the same reviewer.

Table 13. Eligibility Criteria.

Table 13

Eligibility Criteria.

Article Sampling

Once the eligibility of all citations retrieved through the literature searches had been determined (n = 59), the number of included studies (i.e., sample size) was deemed too large to analyze adequately within the time constraints of a rapid qualitative review. Accordingly, we determined that a purposefully selected sample of the eligible studies would allow for more detailed engagement with the data and result in a more relevant analysis. To develop our sample of included articles for analysis, based on the list of eligible full-text articles, we used a purposeful sampling strategy that applied the technique of critical case sampling.95 The critical case sampling strategy helped ensure that our sample would “yield the most information and have the greatest impact on the development of knowledge.” (p. 276)96

To assist with sampling decisions, we drew from key concepts that arose during conversation with five individuals living with a diagnosis of PTSD. We engaged with these individuals throughout the course of the HTA as a way of gaining insight on what it might be like to live with PTSD and partake in subsequent treatment for that PTSD. Individuals were led in conversation by the CADTH patient engagement officer and the primary qualitative research officer on the project. Following the discussions, notes from the conversations were summarized, with personal identifiers removed, and shared with the review team. The patient engagement officer and qualitative research officer then met with a second qualitative researcher and a qualitative methodologist to identify and develop critical case sampling criteria that addressed key issues raised during patient engagement. The concepts identified as our critical case sampling criteria were access, catalysts for diagnosis, relationality, and treatment burden. In addition, we endeavoured to include key populations such as parents of medically fragile children, experiences reflecting various sources of trauma (e.g., medical trauma, traumatic childbirths, victims of violence including sexual violence, or work-related PTSD), and any reports specifically on the topic of iCBT for PTSD.

To minimize the potential for bias in selection, two reviewers jointly reviewed the eligible full-text articles and sampled for critical cases. Disagreements were resolved by discussion.

Data Analysis

A “best-fit” framework approach to data analysis was used to analyze data relating to the perspectives and experiences of people living with a diagnosis of PTSD, as well as those of their families and health care providers, with a specific lens on how these perspectives and experiences might be relevant to the uptake of iCBT.97 While the best-fit method suggests a systematic search to identify models or theories that could form a foundational framework, the thematic categories identified within the patients’ perspectives and experiences section of CADTH’s Optimal Use project on iCBT for the treatment of mild-to-moderate major depressive disorder and anxiety disorders were chosen for this purpose.38 As iCBT is the intervention of interest in both reviews, these categories were perceived as an appropriate framework without the need to undergo an extra systematic search under abbreviated timelines. These thematic categories include experiences related to:

Content: This involves experiences with iCBT’s modules and how these are designed to facilitate knowledge transfer (or not) to the participant. It also involves experiences regarding modes of communication within the intervention, the adaptability of the intervention to the participant, and the navigation skills necessary to use the intervention.

Process: This involves experiences with iCBT’s accessibility, convenience, flexibility, anonymity, and privacy (or not). It also involves participants’ perceptions on what is required for them to successfully engage with iCBT (or not), and experiences with completing these requirements in the given time frame.

Relationality: This involves perceptions of and experiences with a therapist or supporter throughout the use of iCBT.

Context: This involves experiences with the ways in which both personal (e.g., severity of condition) and structural (e.g., availability of intervention) situations influence engagement with iCBT.

Articles were imported into NVivo 1198 for data analysis. The primary reviewer began by coding the results sections of documents, line by line, using an initial set of codes defined by the foundational framework. New codes and subsequent thematic categories were developed to accommodate findings emerging from the included literature not accommodated within the initial framework and that may highlight differences in experiences in relation to PTSD. Codes were refined and organized into concepts and findings through ongoing and frequent discussions between the review team, and supported by the use of diagramming and memoing. This iterative and conversational approach aided in ensuring that the primary reviewer was engaging with the material in an appropriately reflexive mode of inquiry.

Results

Quantity of Research Available

A total of 1,009 citations were identified in the two literature searches (with duplicates removed). Following screening of titles and abstracts, 941 citations were excluded and 68 potentially relevant reports from the electronic search were retrieved for full-text review. An additional potentially relevant publication was identified through hand searching of bibliographies and was retrieved for full text review. Of these 69 potentially relevant articles, three were excluded due to an irrelevant study design and seven were excluded as they did not focus on an intervention. Therefore, 59 publications met the eligibility criteria.

Following sampling, 13 publications were included in this report. Appendix 12 presents the PRISMA63 flowchart of the study selection process.

Summary of Study Characteristics

Details regarding the characteristics of included publications and their participants are provided in Appendix 13.

Study Design and Data Collection

Of the thirteen included publications, twelve were primary qualitative studies99110 and one was a mixed-methods study.111 Five studies used grounded theory analysis techniques,99101,105,110 five used phenomenological approaches,102,103,106,108,109 two did not specify particular qualitative designs or analysis strategies,104,107 and the qualitative component of the mixed-methods study was analyzed using content analysis.111

Twelve studies used interviews as the method of qualitative data collection, while one used focus groups.111

Country of Origin

Seven studies were conducted in the US.99101,104,105,107,111 Two studies each were conducted in Australia103,106 and the UK108,109 and one each in Canada110 and Norway.102

Intervention Type

Eight of the included studies explored perspectives and experiences with various forms of CBT. Of these, six were oriented around experiences with prolonged exposure (PE) and cognitive processing therapy (CPT). The American Psychological Association (APA) defines CPT as a “therapy that focuses on the cognitions developed as a result of the trauma and the role that inaccurate or distorted cognitions have on emotional responses and on behavior.” (p. 125)112 The APA defines PE as a “therapy designed to help PTSD sufferers emotionally process their traumatic experiences through repeated revisiting and recounting of their trauma memories (imaginal exposure) and repeated, gradual confrontation of feared situations, places, and things that are objectively safe but feel more dangerous following the traumatic event (in vivo exposure).” (p. 125)112 Another study focused on experiences with trauma-focused CBT. Another specified the intervention as under development but drawing on the principles of CBT.

Of the remaining studies, one focused on compassion-focused therapy, another on experiences from skills training in a stabilization group, and three did not specify the types of interventions being engaged by their participants. Of note, no studies specifically examined experiences with iCBT.

Patient and Clinician Characteristics

The thirteen included publications reported the experiences of 119 individuals living with a diagnosis of PTSD, of which 80 were veterans. Health care providers’ experiences included a variety of professions: psychologists (n = 242), psychiatrists (n = 13), social workers (n = 133), nurses (n = 14), traditional counsellors (n = 5), traditional healers or medicine people (n=3), traditional counsellor and teacher (n = 1), Elders (n = 1), and “other” (n = 10).

Summary of Critical Appraisal

In general, the included publications were assessed to be of moderate-to-high quality. Details of the critical appraisal can be found in Appendix 14

The primary issue affecting the quality of the individual studies was their relevance to the current review. As there were no studies included that dealt directly with perspectives and experiences surrounding the use of iCBT for PTSD, the degree to which definitive statements can be made regarding this HTA’s decision problem is limited. While this does not lessen the significance of the review’s findings, it should be considered when deliberating on its generalizability. Further, seven studies failed to adequately consider the relationship between study authors, study participants, and study findings, which could impact the credibility of the overall findings.99101,104,105,107,109

Summary of Findings

Relationality

As a thematic finding for this review, the concept of relationality demonstrated how experiences living with, coming to know, and engaging in treatment for PTSD are neither isolated nor stable events in the lived worlds of PTSD. These experiences are, at least in part, dependent upon how (or from where) one stands in relation to others and self. While what qualifies as PTSD and its potential treatments were couched within the clinical languages of the DSM or evidence-based psychotherapies, how those diagnoses or treatments were enacted was often described as contingent on the forms of internal and external relations at play. Our engagement with the concept of relationality reflected on this contingency and worked to draw out how descriptions of things like therapeutic relationships, relationships with others outside of therapy, and relationships with one’s self interacted with the effects or values placed on the variety of included therapies.

In the previous review of iCBT for major depressive disorder and anxiety, we found that patients were often concerned with elements like the pace of treatment, communication or monitoring features, and the demands of fully engaging with treatment.38 However, the variability in focus of these concerns and their suggested solutions made it difficult to identify generally appreciated aspects of iCBT programs intended to treat major depressive disorder or anxiety. As such, our primary conclusion pivoted around the idea that assuming a one-size-fits-all model of iCBT would disregard this variability and “neglect the importance of tailoring emphasized within patient experiences.” (p. 39).38

Our broadened reading of relationality for the current review supports this overall conclusion and may help to provide further insight into where or how this tailoring might happen when considering the potential uses of iCBT for PTSD. While it is recognized in the sections on “content” and “process” that treatment success relies on the internal makeup, logic, and course of a chosen intervention, our analysis of the forms and importance of relationships described throughout the included literature suggests that these components are already well situated within larger fields of relations. Simply put, our analysis suggests how concerns with treatment content or processes can more easily rise to the fore and become addressable through an attentive appraisal of how one stands in their relations.

The value of being attentive to relations is reflected in the way strong therapeutic relationships can provide the grounds for providers and their patients to navigate disparate preconceptions of interventions (like iCBTs) or encourage sticking with chosen interventions by instilling a sense of being heard, respected, and of a “shared humanity.” Even if not pursued, having the opportunity to actively collaborate in one’s own treatment decisions, and thus the opportunity to tailor treatment, could further establish a sense of comfort with treatment and foster the sense that “I can do this.” With higher dropout rates from iCBT programs meant to treat PTSD, as compared with wait-lists, it is possible these programs could benefit by re-evaluating the touchpoints between patient and provider, as well as the overall space provided to develop strong relationships.

This is important when working through which patients might be appropriate for iCBT (or how to adapt particular iCBTs to an individual patient), but also when thinking through the asks being placed on the shoulders of the individual undergoing treatment. The included literature tended to work through notions of “readiness” or “motivation” by situating the responsibility “to be ready” on the patient. Interventions, particularly those focused on exposure, were understood as stable objects that anyone could engage in given the right level of preparedness and motivation. As such, readiness and treatment were seemingly understood as activities of “doing” or “knowing.” Doing (or having done) work to develop the right affect management skills (which is typical of early iCBT modules) and positive coping strategies (again, typical of early iCBT modules) were considered necessary components of the exposure-ready patient. For iCBT programs that include exposure elements, one way of supporting patients and building awareness of how difficult this might be for them could be to ensure a clear understanding of the relationship between how the development of these skills or strategies is connected to the thoughts or behaviours they are meant to address, and why this matters for the exposure elements of treatment.

The notion of readiness also included conversations around a third component of the exposure-ready patient: motivation. What it meant to be motivated, or how motivation was felt to play a role in successful treatment, could be different depending on whether people were considering their treatment goals in the moment, or contemplating what a new life might look like after successful treatment. This temporal shifting of notions of motivation has the potential to reframe motivation from questions of “How do I stand in relation to myself? (Am I ready to do this?)” to “How do I stand in relation to myself in the world? What does (hopefully) successful treatment change about the world I live in?” When readiness is considered as primarily coming from a space of patient characteristics making them ready to engage with a therapy (or not), we lose sight of the way in which patients, treatments, and their providers are situated within larger worlds. As such, assessing an individual’s readiness to engage in a treatment like iCBT may benefit from broader conversations than whether an individual has the appropriate skill set or willingness to change.

Therapeutic Relationships

Patients and providers consistently described the development and maintenance of a strong therapeutic relationship as an important component of treatment for PTSD.99101,105,106,108,109 Descriptions of the work these relationships could do and what they might look like in practice took on multiple forms, but most hinged around the assumption that stronger relationships meant stronger results. In its simplest form, a well-established relationship could help to bridge potentially differing valuations of treatment purpose or utility of treatment held by providers and their patients.99,100,105 And while bridging often took the form of providers garnering buy-in for a suggested course of treatment from their patients,99,100,105 it could also indicate interest in pursuing collaborative approaches to treatment.106,109 Being a collaborative partner in treatment helped to develop a sense of respect and provided patients with the opportunity to engage with therapy “at my pace.” (p. 227).109 This could help them feel more capable of incorporating the techniques being shared during therapy into their lives and more aware of what they might be achieving (or not) through treatment.109

Fostering this relationship early on (whether based on collaboration or not) could establish the groundwork from which to comfortably have difficult conversations regarding veering off track from the treatment goals,101,109 or whether chosen treatments still felt right and should continue to be pursued.101,105,108 The asks associated with successful completion of treatments for PTSD, particularly those engaging with re-exposure to traumatic memories or situations (i.e., PE and CPT), can be quite challenging and require a lot of active participation on the part of patients.100,107 Feeling as though a provider understood this and could recognize when they (as in the patient) were struggling, could “make it a little bit easier to show up.” (p. 53).101

While this could be as straightforward (and imprecise) as developing a “good working relationship,” (p. 9),100 it could also be caught up within notions of shared humanity,106,108 feeling heard,109 and being acknowledged as more than just another patient downloading expert knowledge.106,108,109 In this way, some practitioners saw a strong relationship as a way of sharing in their patients’ journeys rather than directing them from a removed space of objective expertise.106

“You notice that the clients are different… How they respond to you when you’re not trying to be technically perfect…or when you’re not trying to be the expert…you know. I think that’s…a mistake we all make, this idea that we have to be the expert all the time…and that’s not what they’re looking for… You can get that out of a book.” (p. 198).106

Concerned with the felt restrictions placed on them in an in-patient setting oriented toward eight 12-week intervention time frames, this provider suggests that caring for their clients happens somewhere outside of the space of expert knowledge. Knowledge can (and should) certainly be passed along but situating themselves in a space outside of expertise with their clients could open the door for a “shift then in therapy.” (p.197).106 Not doing this could make the treatment feel packaged and like something you can get “out of a book.”

Developing these types of relationships, however, can take time and is often easier said than done. This could be particularly true of residential programs where rigid timelines100,106 and structural pressures to pursue a one-size fits all, “diagnose-treat-discharge” model to care provides little room to build anything more than an “artificial therapeutic relationship.” (p. 196).106 This could not only be damaging to the patient’s desire or ability to pursue and continue treatment, but it could also leave providers feeling disconnected, desensitized, deskilled, and ultimately “complicit in their patient’s distress.” (p. 196).106 This could be further exacerbated by a lack of continuity in care. Speaking of the lengthy referral process in the US Veterans Affairs system, one veteran explained, “Then she tells me, okay I’m going to assign you a new therapist. I’m thinking, shit I gotta go through this again. That’s when I quit, yeah, that day.” (p. 539).99 Hopping from provider to provider could be difficult for patients as with each new provider there was a renewed need to describe their traumatic experience(s).

If we are to take seriously the value placed on therapeutic relationships described here, ensuring iCBTs are able to be engaged in ways that permit the development of these relationships is important. Given the described importance of these relationships it seems less likely that unguided iCBTs for PTSD would be considered as useful or chosen over guided iCBTs by both providers and patients. While expected or desired ideas of what a relationship might look like, and how one goes about developing it, can certainly vary by person (e.g., there may be individuals who prefer unguided or minimal guidance), implementing and engaging in iCBT programs that take this variability into account would also need to be considered. The freedom for patients and their providers to collaboratively adapt chosen iCBT programs to suit relationship needs or desired outcomes would help alleviate the difficulties of this variability.

That being said, relying on the iCBT program alone to foster this relationship and successfully treat PTSD is not sufficient. The uptake and, hopefully, subsequent positive effect of an intervention like iCBT is, at least partially, already situated within a relationship established on trust, respect, empathy, shared humanity, and active listening.99,105,106,108,109 With this in mind, it is important to acknowledge that using iCBTs to treat PTSD is likely not appropriate for everyone. Even if concerns over adaptability and collaboration are satisfied, it is possible that the modular design and limited timeframes of iCBTs could limit the opportunity for providers to downshift from expert to listener. Of course, it is possible that the movement between expert and listener could be more related to the provider’s own ability to navigate the needs of their patient within the treatment paramenters rather than the design of any intervention. Simply put, some providers may struggle with meeting patients needs of desiring this depth and form of relationship regardless of intervention (e.g., be that iCBT or face-to-face CBT), and responsibility for fostering this sort of relationship should not be situated squarely on the intervention alone.

In many ways this resonates with how some traditional healers understood their role in caring for their clients. One healer noted,

“The way healers work — or medicine people work — is they don’t actually do anything themselves. They build their connection through their teachings, through their way of life, through how they live. And their connection becomes very strong. So what they do is, they do ceremony. And in that ceremony they actually are consulting with some of these spirits that people are experiencing. They consult with the people’s spirits. And when they do that consulting…those spirits know how to help this person heal.” (p. 71).110

In this example, while healers are indeed holders of expert knowledge, this knowledge is grounded in their ways of life — this knowledge implicates the healer as more than expert knower. To successfully care for their clients, a healer needs to consult with something other than themselves. Then, and only then, does the healer know how to help this person heal. In this way, caring is grounded in that relational aspect of a therapeutic relationship.

Relationships With Family, Friends, and Other Peers

A growing awareness of the shifting relations between family, friends, and peers was articulated as playing an active role in coming to realize something was off, eventual pursuit of treatment, and desired forms of treatment.101,108,109 Living with PTSD can be disruptive to the daily norms of family life and for some people it took their loved one’s expressing concern to initiate treatment. “I mean a couple of times I’d go upstairs and lock the door and I would stay upstairs for two days… It was my partner who picked up on it. It was causing a lot of rifts between me and her. But I was like yeah, let’s go and give it a go and see what happens.” (p. 226).109 Understood as a problem situated within a larger field of relations than themselves, some individuals even expressed a desire for their friends and family to be collaborative participants in therapy.109 While a desire for collaboration was often tied to notions of developing independence or control over their lives, it was also considered important to the development of lives outside of active therapy.109

The presence of strong ties to family or peers also contributed to the will to stick with treatment.101,108 While some indicated being driven by the commitment they had made to their peers regarding treatment completion,101 for others, knowing that they were not alone throughout treatment108 and could count on loved ones was integral to treatment success. “My other half was supportive of it. She was here every day. If she hadn’t’ve been here every day I think I’d’ve walked out.” (p. 53).101

Given the largely individualized space of iCBT programs that are built around a patients’ drive to develop their own relationships or skills to build these relationships, it could be important to consider ways of incorporating participation from family and friends. While not every person living with PTSD will need their family, friends, or peers to be involved, finding a way to recognize the importance of these relationships could help to maintain treatment goals for some patients.

Relationship With One’s Self

As a diagnostic category marked by clinically recognizable poor relations with one’s self (e.g., criteria C, D and E in DSM-V),4 the commonality of conversations concerned with how that self might be implicated in treatment is perhaps unsurprising. While these conversations were typically situated within a language of readiness, it is important to note how the use (and meaning) of terms like “readiness” or “motivation” shifted among participants. Most providers and many of their patients interpreted and used these terms as a way of articulating both patient suitability (or not) for certain forms of PTSD treatments,100,104,107 and desires to change or “do” something about how one was living.102,109 For others living with PTSD, being ready could be a reflection on treatment suitability (or not) for their lives,99,105 and an engagement with just what treatment might mean for their lives.102,108,109 One asked, “What do I need right now to make myself ready for treatment?” and the other, “How will being ready for, and engaging in, treatment ask me to live differently in the world?” While subtle, the shifting inflection point between these two uses draws attention to the temporal frames involved in seeking, receiving, and completing treatment for PTSD.

Though it is important to note that concerns with readiness “to do” tended to be situated within clinical frames of treatment, they were not the exclusive domain of providers as they were often shared by patients, as well. That being said, we do take our framing of this understanding of readiness from providers working within the US Department of Veterans Affairs. As such, readiness for evidence-based psychotherapies, like PE and CPT, was described as reflective of a patient’s “affect management skills,” “psychiatric and external stability,” and an individual “readiness to change.”100,104,107 In this way, treatment success is tied to a form of readiness that happens when a patient’s ability to self-manage is paired with their “hunger”100 to change. As trauma-focused treatments predicated on the therapeutic importance of re-exposure to traumatic memories, feelings, or situations, without this base, practitioners worried that treatment could ultimately be unsuccessful.100,104,107 Following an eight-week PE or CPT protocol is “fast and furious and so it can feel, I think in some ways, and we’ve seen this with some of our veterans, kind of like ‘whoa, I don’t know if I can do this.’” (p. 6).100 Without knowing that “I can do this,” the fast-ness and furious-ness might overwhelm the veteran and render a treatment unsuccessful. While a number of stopgaps had been established in these programs to develop readiness in their clientele (i.e., psycho-educational and skill building groups),100,104 dropout rates were often still linked to patient readiness — “About a third are dropping out and typically they’re not dropping because they don’t need it.” (p. 93–94).104

In this reading, it is possible to make statements like “I think there’s probably no bad client for CPT and PE. It’s just getting clients to be willing to do those treatments that’s the challenge.” (p. 139).107 The interventions themselves are seen as stable objects full of therapeutic potential, ready and waiting for the motivated individual. While this was indeed echoed by many individuals living with PTSD across intervention types,99,101,102,105,108,109 it was, at times, complicated by slightly disparate understandings of what qualified as motivation or “a willing[ness] to do those treatments.”

For some, a desire “to do” was caught up within feelings of deservingness. This is not surprising given that an “exaggerated blame on self or others” is a possible indication under criterion D for PTSD.4 Questioning whether one deserves to heal makes it possible to say, “I still felt that I didn’t deserve to be happy or to have nice thoughts or to be kind to myself. I thought that by [being compassionate], there were things that would make me smile and I felt, well, I know it sounds silly, as if I wasn’t allowed to smile.” (p. 499).108 Describing motivation as a “willingness to do” or “hunger” to change fails to recognize a potential disconnect between what might be wanted and what is able to be done.

For others, that motivation is simply a matter of wanting “to do” something devalues the extent of the ask being passed along to individuals engaging in treatment. Knowing that something feels off and wanting to address that something can butt up against concerns of what it means to face that something — “Am I going to like the person that I’ve become? Because I’ve been like this, with these memories and these thoughts for so long.” (p. 499).108 For this individual, the question was less about do I want to “do it,” (as they had “done it” in the form of compassion-focused therapy) and more, “Who am I without these memories and thoughts?” As such, assessing readiness or motivation might be less about wanting “to do” and rather something more like a reflection on the aftereffects of that doing and how it can upend one’s lived world.

Again, this is not to say that providers and their clients were universally at odds when describing notions of readiness or motivation. Many patients aligned with providers by describing a sort of upfront desire to do, “Yes, I need motivation! Help me see the goal. Because I felt, in the group too, I need help to see the goals! ‘What does this do?’ ‘What does it help me?’ ‘Where are we going?’ ‘What is happening?’” (p. 576).102 Even when tied to a need to understand the point of treatment, the focus for motivation here is situated around that act of change rather than the aftereffects of that change. While these concerns are indeed distinct, they are not in opposition. The first seems primarily to be oriented toward those “techniques of self” necessary to successfully engage with treatment, but the second situates the development of these techniques within a larger plain of relations. Both ask questions about that relationship one has with one’s self, but one drags the relationship with one’s self out into the way therapy could have an effect both within one’s self and the world.

Descriptions of how one’s relationship with one’s self is implicated in treatment becomes important to thinking through the use of iCBTs for PTSD in a few ways. On the one hand, this relationship was actively tied to the techniques or tools one needed to be ready to engage in certain forms of treatment. Studies oriented around PE and CPT qualified this as “affect management skills.” As exposure is often a component of iCBT, it is important that individuals engaging in the exposure elements of iCBT have appropriate affect management skills. This is valid and, according to our reading, would seemingly be appreciated by providers and patients alike. The development of and ability to apply these skills in one’s daily life could be liberating and can open the door for those living with PTSD to begin “relat[ing] differently to their problems.” (p. 577).102

This relationship also comes to bear when thinking through the relationality of interventions like iCBT. As interventions existing and being engaged within the lived worlds of patients, iCBTs and the asks associated with successful completion of an iCBT program do not stand in isolation from these lived worlds. The techniques and tools being developed, or exposure elements being worked through, in these programs only have practical effect when applied to the lived worlds of those patients engaging with them. As such, it would be helpful to remember that notions of “motivation” apply to more than a willingness “to do” an iCBT. Knowing that one is ready and motivated to engage in treatment is not the same as knowing what happens once one has completed treatment.

The importance of understanding this situating in the world was also prevalent in Reeves and Stewart’s110 study with Indigenous counsellors, healers, and Elders. Some expressed the wounds of trauma as a broken spirit. While it was first important to understand the context of their Indigenous clients (situated within histories of colonial violence) it is then important to understand how this can play out on their daily lives with new, non-historical, traumas. If one such wound is a broken spirit in which a lost connection with the spiritual worlds around them is manifested, one Elder asks, “So how do you re-Aboriginalize ourselves [sic]? In terms of utilization of spirit? Which is probably the weakest part of ourselves that we didn’t grow with and nurture… Healing has to reflect the cultural paradigm.” (p. 69).110

Content

Given that there were no studies found engaging with either patients’ or providers’ experiences of iCBT for PTSD, the thematic category of “content” as taken from the previous report on the use of iCBT for major depressive disorder and anxiety required some adaptation to meet the objectives of this review. As the studies included in this review engage with therapies ranging from skills training in stabilizing groups to more intensive ones like PE or CPT, it was neither possible, nor practical, to capture the breadth of commentary surrounding intervention-specific content concerns as was done in the prior report. Rather, “content” for the purpose of the current review was explored from a high-level reading that considered how participants described the value, rather than makeup, of the types of content being engaged. As such, content here highlights the value placed on skill building programs and the importance of a program’s content to be adapted to patient needs.

The importance of a strong set of tools or skills with which to face the daily stressors of life with PTSD was widely recognized among both practitioners and patients.100,102,104,107 Such skill building programs were highly valued as a way of reorienting an individual to the world around them and their life with PTSD. These programs were described as helping to foster a sense of control over affective responses by building a connection between understanding the “cause of their problems” and how tools might help them enact that desired control.102 “My feelings have controlled me a lot… I have, in a way, existed. Floated along. And that is a really big difference from now, when I see that I have a choice, and if I choose that it has a consequence, and if I don’t choose that it gets another consequence.” (p. 575).102 As described previously, the importance of this control was reiterated by providers situated around treatments like PE or CPT.100,104,107 Providing iCBT programs with approachable content that helps to deepen an individual’s knowledge of PTSD, while articulating the relevance of how that specific treatment is meant to address PTSD, would seem important.

Similarly, homework was described as helpful, though could be difficult to engage with at times due to time constraints or inappropriate language.102 For example, some individuals described that it could be difficult to relate to some of the language used in treatment. “I used this safe place [but] What the hell, safe place, what is a safe place? I didn’t really experience a lot of safety, so it became: ’Hm…ok, yes. I like to be outdoors, in the nature, it helps me relax. Calm place. So rather that.” (p. 576). While the term “safe place” itself may have been useful for others engaging in this treatment, for this individual it was difficult to identify what a safe place could be as they had not experienced the feeling of safety very often in their own life. As such, they needed to adjust the language to suit their own situation and needs. Though it seems as if this individual was able to do this successfully, it is possible that it may be restrictive for others102 and could prevent them from successfully engaging with treatment. While this is a minor example, it does reiterate the potential importance of tailoring iCBT programs to the individuals engaging with them that has been noted throughout this review. Ensuring that appropriate language throughout iCBT modular work and homework activities would seem important when deciding whether a particular program is appropriate for the patient.

Traditional counsellors, healers, and Elders included in Reeves and Stewart’s110 study, spoke to the importance of providing healing oriented around an understanding of spirituality as “a cornerstone of wellness” for their Indigenous clients. Similarly, while these providers unanimously considered Western and traditional forms of healing as compatible, it was important that clients decided which content was considered important to their healing. As such, they noted the value of being able to track back and forth between traditional and Western forms of healing. One counsellor noted that this could take the form of “doing some basic psycho-educational training with clients and maybe using some grounding techniques and tuning into the fives senses, and then we suggested praying with a grandfather or rock, help to ground them when they’re triggered.”110

Process

Similar to the way in which the thematic category of “content” did not directly fit into this review from the previous review of iCBT for major depressive disorder and anxiety,38 the thematic category of “process” likewise needed refinement. Again, as it was neither possible nor useful for this report to engage in the details of each intervention, we present here a high-level understanding of the important procedural pieces for successful treatment of PTSD. As such, process here highlights the value placed on buy-in to treatment and flexibility in things like scheduling or location of treatment.

Across interventions, respondents repeatedly commented on how difficult it could be to engage in treatment for PTSD.99102,105 Recognizing, responding to, and treating PTSD is neither intuitive nor as simple as following a series of steps. A host of relational (as previously described) and practical issues can complicate the procedural quality of therapy. As such, an initial buy-in to therapy was described as dramatically helping improve the likelihood of successful engagement with therapy. Buy-in, in large part, can be motivated relationally through the development of strong therapeutic relationships built on trust and empathy,106,108,109 peers vouching for particular modes of treatment,101,105 or individual alignment with the goals, ideals, and problems couched within treatment protocols.99,101,102,108 Again, while buy-in to (or collaborative agreement upon) suggested treatment may happen through relationships with providers or others, for an iCBT to be successful it is likely that those engaging with the program would need to agree with the reason for engaging in the program.

More practically, some patients spoke to the difficulties of attending face-to-face therapies. Being unable to take time off of work, the difficulties associated with the frequency and distance of travelling to therapy, and poor scheduling flexibility could mitigate any effect treatment might have.99,111 This could be further exacerbated in care settings where patients’ had previous negative experiences. This was particularly true in settings like VA hospitals where US veterans receive the majority of care for their medical needs. “I’ve got everything wrong with my back, but you can’t even give me a damn MRI. That’s why I’m done with the VA…the doctor telling me that it costs too much for him to put in a order for me to have an MRI… My trust is not there with the VA.” (p. 540).99 Others could feel out of place or simply uncomfortable in their particular care setting. “I despise going to the VA like with every fiber of my being. There are people everywhere, just hordes of people everywhere. I think that I was the only female in there, and I was just, I almost left… Usually I sit there with my purse clutched like I’m at the subway station in New York or something.” (p. 540).99 As iCBTs are able to be engaged with at one’s convenience, and in one’s own home, their value in potentially alleviating these concerns would likely be appreciated by individuals engaging with them.

Clear access to and communication with providers was also considered a helpful component of treatment.111 For some patients, the opportunity to communicate with their providers online was understood as helping provide a more detailed and thorough description of their day-to-day lives. “When I was on active duty my psychiatrist and psychologist used email and it was good for them when I could express how I felt at that time; for them to gauge my overall health status and not just what I say when I’m sitting in their chair.”111 Even when replies from their provider were asynchronous, being able to reach out and describe what was happening in the moment was understood as a valuable addition to treatment. The features of most iCBT programs may already be well suited to this form of communication and could provide further benefit for those who might find expressing themselves in person daunting.111

Context

Unlike content and process, it was appropriate to port the thematic finding of “context” into this review from the previous report on iCBT for major depressive disorder and anxiety.38 In the previous report, context was understood as involving experiences with the ways in which both personal (e.g., severity of condition) and structural (e.g., availability of intervention) situations influence engagements with treatment. While both of these have been previously articulated and are highly relevant to thematic categories like relationality and process, there is more nuance to ways that context influences experiences with treatment.

Providers repeatedly articulated the ways in which the presence of psychiatric comorbidities could limit the effectiveness of interventions like PE or CPT.100,104,107 One way of approaching comorbidities was to address them prior to treatment for PTSD, “Whether it may be substance-related issues or severe personality pathology or bipolar, they probably need a degree of stabilization in those areas before they can really focus in and do the type of trauma-focused work that we would need them to do in a CPT or PE.” (p. 138).107 Another was to potentially treat them together, “Maybe PE and a combination with other things but PE alone, when you’re dealing with more than one psychiatric condition, you have to treat all of them.” (p. 138).107 Some patients experiencing both first-episode psychosis and PTSD found treating them together difficult even if eventually valuable.103

Though minor, some patients did note that treatments that they would have liked to engage with rather than those available through their care provider (e.g., PE and CPT) were unviable and one reason for not engaging with treatment.99 Implicit here is that iCBT could provide another option to the standard treatments available.

Traditional Indigenous healers, counsellors, and Elders described the exploration and understanding of context as a primary need when thinking of healing from trauma. Context was largely presented in conversations around “loss” that included themes of colonization, “trauma as a constellation of losses,” and “wounds.” Participants described colonization as the policies and systemic injustices meant to assimilate Indigenous culture into Western culture and was understood as a fundamental driver in many of the mental health issues facing their clientele. Forms of colonial oppression like the residential schooling system and adoption policies of the Sixties Scoop were described as having been disruptive to the transmission of culture across generations and were considered responsible for a host of negative outcomes, including complex trauma and sexual abuse.

As such, participants described their clientele’s traumas as situated within a “constellation of losses” rather than the result of a single event. Whether referring to poor social determinates of health or the notion of “historical trauma,” this constellation of loss was considered important for participants to acknowledge as it allowed them to demarcate the complexity that would need to be spoken to. “I can show you four generations of residential school issues, where, you know, the kid hasn’t gone, his parents haven’t gone, his grandparents never went, but his great-grandparents did. But the kid has all the same symptoms that the great-grandparent had…because no cycle was broken.” (p. 66–67).110 The manifestations of these ongoing and reinforced cycles of trauma as well as any new traumatic experiences were described as “wounds.” One of the forms a wound could take was described as a “broken spirit.” (p. 67).110 A broken spirit was someone who was “lost spiritually…and I think that’s what people feel, is that general sense of loss and not feeling connected to anything around them. And people can get stuck in there for years and years — their whole lives!” (p. 67).110

Limitations

The included publications focused on providers’ and patients’ perspectives regarding decisions of whether or not to engage with various psychotherapies for PTSD, as well as experiences providing or undergoing these psychotherapies. While the original intent of this review was to include perspectives and experiences of engaging with iCBTs for PTSD, as no literature was identified that specifically focused on iCBTs, we broadened our focus to perspectives and experiences with any psychotherapy treatment for PTSD.

The lack of literature specific to experiences with and perspectives of iCBT for PTSD raises a few concerns. The included literature potentially privileges the value of the therapeutic relationship because all of the interventions that patients and providers had experienced in the included studies were face to face. While this does not invalidate the findings represented under the theme of relationality (indeed the importance of a strong therapeutic relationship remains clear for participants included in the studies), it does encourage reflection on how the results of this review may be used.

This review is not meant to provide descriptions of “preferences” of patients and providers engaging in treatment for PTSD. Rather, the type of work presented here provides potential glimpses into what it might be like to engage with treatment for PTSD. These glimpses should not be understood as representative of the complete and uniform perspective or experience, but should rather be understood as part of a patchwork of perspectives or experiences across a range of individuals living with, or caring for people living with, PTSD.

The findings in this review are meant to inform a deliberative process that recognizes the potential diversity of human experience and can provide balance to the generalizations of clinical outcomes data and QALY evaluations. Knowing that the people participating in studies included in this review found a strong therapeutic relationship valuable and effective in their treatment regimen does not imply that all people engaging in treatment for PTSD will feel similarly. Rather, this finding raises the question of how, if interested in providing iCBTs as a treatment option for PTSD, we implement iCBT programs that can adapt to the diversity of relational needs or desires involved in the care of PTSD.

Given the lack of primary qualitative studies directly exploring experiences with iCBT for PTSD, it is unclear which, if any, findings from CADTH’s previous HTA on the use of iCBT for depression and anxiety38 are transferrable to the PTSD context. While we know that participants included in the studies in that review valued the adaptability of iCBT programs they had engaged with and, generally, though not always, appreciated the involvement of a therapist in their treatment, the applicability of the nuance of these findings (e.g., what aspects need to be adaptable or how therapist was involvement helpful) is uncertain in relation to the current policy problem.

Of the 13 included studies, seven were conducted with US veterans or their care providers. Differences in the organization of psychiatric care across jurisdictions could not only influence the types of therapies available, but also the forms of traumatic experiences being lived.

Similarly, at least one issue described in our conversations with individuals living with PTSD through patient engagement work was absent from the literature — how varied forms of trauma might be recognized, diagnosed, treated, and experienced differently. In these conversations, it was made clear that the experience of PTSD is not universal across forms and that part of this has to do with the likelihood that traumatic experiences will be recognized as potentially developing into clinical diagnosable PTSD. While our literature search did return some studies exploring the experiences of people living with PTSD resulting from events such as childbirth or caring for sick children, none explored how these individuals engaged with treatment; thus, these were excluded according to our inclusion criteria.

Copyright © 2019 Canadian Agency for Drugs and Technologies in Health.

The copyright and other intellectual property rights in this document are owned by CADTH and its licensors. These rights are protected by the Canadian Copyright Act and other national and international laws and agreements. Users are permitted to make copies of this document for non-commercial purposes only, provided it is not modified when reproduced and appropriate credit is given to CADTH and its licensors.

Except where otherwise noted, this work is distributed under the terms of a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International licence (CC BY-NC-ND), a copy of which is available at http://creativecommons.org/licenses/by-nc-nd/4.0/

Bookshelf ID: NBK554856

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