Helpful and meaningful aspects of a psychoeducational programme to treat complex dissociative disorders: a qualitative approach

ABSTRACT

Purpose: Complex dissociative disorders (CDDs) are prevalent among psychotherapy clients, and research suggests carefully paced treatment for CDDs is helpful. The purpose of the present study is to qualitatively explore helpful and meaningful aspects of the TOP DD Network programme, a web-based adjunctive psychoeducational programme for the psychotherapeutic treatment of clients with CDDs.

Methods: TOP DD Network programme participants (88 clients and 113 therapists) identified helpful and meaningful aspects of their participation in response to two open textbox questions. Framework analysis was used to qualitatively analyze client and therapist responses.

Findings: Participants found the TOP DD Network programme helpful and meaningful in nuanced ways. Three themes were created: (1) Components of the Programme (subthemes: content, structure), (2) Change-Facilitating Processes (subthemes: heightened human connection, receiving external empathy and compassion, contributing to something bigger, improved therapeutic work and relationship), and (3) Outcomes (subthemes: insight, increased hope, self-compassion, increased safety and functioning). The most emphasized theme was components of the programme, which captured its content and structure.

Conclusion: Clients and therapists in the TOP DD Network programme described the programme’s components and processes as helpfully facilitating positive outcomes in the treatment of CDDs. Therapists may consider integrating the components and processes in the programme into their practice with clients with CDDs.

HIGHLIGHTS

• The aim of the present study was to qualitatively explore significant aspects of the TOP DD Network programme through the experiences of complex dissociative disorder (CDD) clients and psychotherapists.

• Helpful and meaningful aspects of the programme included its components (i.e. content and structure), processes, and outcomes.

• This psychoeducational programme can be effective and result in improved therapeutic processes and outcomes for individuals with CDDs in psychotherapy.

Propósito: Los trastornos disociativos complejos (TDCs) son prevalentes entre los clientes de psicoterapia y la investigación sugiere que es útil un tratamiento cuidadosamente pauteado para los TDCs. El propósito del presente estudio es el de explorar cualitativamente los aspectos útiles y significativos del programa TOP DD Network, un programa psicoeducativo complementario basado en la web para el tratamiento psicoterapéutico de clientes con TDCs.

Métodos: Los participantes del programa de Red TOP DD (88 clientes y 113 terapeutas) identificaron aspectos útiles y significativos de su participación en respuesta a dos preguntas de cuadro de texto abierto. Se utilizó análisis de marco para analizar cualitativamente las respuestas de clientes y terapeutas.

Hallazgos: Los participantes consideraron que el programa TOP DD Network era útil y significativo en diferentes matices. Se crearon tres temas: (1) Componentes del Programa (subtemas: contenido, estructura), (2) Procesos facilitadores de cambio (subtemas: mayor conexión humana, recibir empatía y compasión externa, contribuir a algo más grande, mejorar el trabajo terapéutico y las relaciones), y (3) Resultados (subtemas: insight, mayor esperanza, auto-compasión, aumento de la seguridad y funcionamiento). El tema más destacado fue los componentes del programa, que recogía su contenido y estructura.

Conclusión: Los clientes y terapeutas del programa de TOP DD Network describieron los componentes y procesos del programa como útiles que facilita resultados positivos en el tratamiento de TDCs. Los terapeutas podrían considerar la integración de los componentes y procesos del programa en su práctica con clientes con TDCs.

KEYWORDS:

• Complex dissociative disorder
• psychotherapy
• helpful aspects
• qualitative
• framework analysis

PALABRAS CLAVE:

• Trastorno disociativo complejo
• psicoterapia
• aspectos útiles
• cualitativo
• análisis marco

Dissociation is prevalent among psychotherapy clients (Brand et al., 2022; Lyssenko et al., 2018), and is characterized by a ‘disruption of and/or discontinuity in the normal integration of consciousness, memory, identity, emotion, perception, body representation, motor control, and behavior’ (American Psychiatric Association [APA], 2022, p. 329). Meta-analyses suggest dissociative symptoms are found transdiagnostically, although the most severe dissociative symptoms are consistently found in trauma– and stressor-related and dissociative disorders (DDs; Lyssenko et al., 2018; van Ijzendoorn & Schuengel, 1996). Dissociative symptoms can be complex and impair functioning, as in the DDs (APA, 2022). The most severe DDs (i.e. dissociative identity disorder [DID] and other specified dissociative disorder [OSDD]) are known as complex DDs (CDDs) and research suggests they are associated with antecedent trauma exposure, particularly childhood complex trauma (Dalenberg et al., 2012; Dorahy et al., 2014). The prevalence rate of pathological dissociation was 4.1% in the National Comorbidity Survey Replication study with a U.S. representative sample (Simeon & Putnam, 2022); the prevalence of DID was 1.5%.

People with CDDs often experience comorbid disorders including posttraumatic stress, mood, substance use, and eating disorders (APA, 2022; Brand et al., 2009; Loewenstein, 2018; Simeon & Putnam, 2022), suicidal ideation and attempts (Foote et al., 2008), non-suicidal self-injury (NSSI; Webermann et al., 2016), and emotion dysregulation (Brand et al., 2019). Individuals with CDDs use psychiatric care at high rates, including frequent inpatient hospitalizations (Myrick et al., 2017). As a result, they incur high costs. These costs have been found to decrease when treated with phasic, psychotherapy-based trauma treatment consistent with expert consensus guidelines for CDDs (International Society for the Study of Trauma and Dissociation [ISSTD], 2011; Langeland et al., 2020; Myrick et al., 2017).

1.1. Treating and researching clients with dissociative disorders

Expert consensus treatment guidelines for CDDs recommend phasic trauma-informed psychotherapy that emphasizes safety and stabilization in the first phase and engaging in trauma processing in the second stage after clients’ NSSI, suicidality and emotion dysregulation have been stabilized (ISSTD, 2011). Indeed, international CDD experts who were surveyed recommended a carefully paced, phasic treatment with emphasis on safety and stabilization through teaching grounding, emotion regulation, and containment exercises while strengthening and repairing the therapeutic alliance as needed (Brand et al., 2012; Myrick et al., 2015). These recommendations are consistent with the clinical literature about treating complex trauma-related conditions (Brand et al., 2022; Herman, 1992, 2023; ISSTD, 2011).

Unfortunately, most mental health professionals have not received evidence-based training in dissociation (Henning et al., 2022). As a result, CDDs are under-recognized, under-treated, and misunderstood; professionals and the general public often believe myths and view these individuals through a lens of stigma (Brand et al., 2016, 2022). This lack of research-supported training often leads to treatment barriers, such as a lack of dissociation-trained clinicians and dissociative symptoms being disbelieved by clinicians (Nester et al., 2022). While some dispute that CDDs are caused by trauma, consistent empirical research supports the trauma model of dissociation (reviewed in Brand, 2023a; Dalenberg et al., 2012; and Dorahy et al., 2014). The trauma model is an etiological framework that understands complex dissociation as traumagenic, particularly related to childhood complex trauma; furthermore, the trauma model includes additional influence from neurobiological factors, hypnotizability, culture, and insecure attachment (reviewed in Brand, 2023a; see also Dalenberg et al., 2012; and Dorahy et al., 2014). Those that oppose the trauma model of dissociation purport that dissociation is causally unrelated to antecedent trauma and is instead explained by fantasy proneness, suggestibility, and false memories; this is known as the sociocognitive or fantasy model of dissociation (Brand, 2023a; Dalenberg et al., 2012). Some fantasy model proponents have shifted from the earlier, more extreme positions about dissociation and DID being due to fantasy-proneness and suggestibility, and now posit that CDDs are etiologically multifactorial and include trauma as a risk factor (see Lynn et al., 2022). Given the lack of training in and understanding of dissociation in the community, as well as the controversy about CDD etiology, understanding effective treatments for CDDs is imperative.

A series of studies known as the Treatment of Patients with Dissociative Disorders (TOP DD) studies illustrate that CDD treatment is associated with beneficial outcomes. A naturalistic TOP DD study surveyed CDD clients and their therapists for 30 months of outpatient treatment; the results showed a wide range of benefits over time including reductions in NSSI, PTSD and dissociative symptoms, increased social functioning, and feeling better (Brand et al., 2009, 2013). Clients with higher self-rated client-therapist alliance were less symptomatic, had greater functioning, and showed better treatment outcomes (Cronin et al., 2014). The TOP DD Network study later assessed the outcomes associated with an online-based video and text psychoeducational programme for CDD clients and their therapists (Brand et al., 2019). Participation in the online programme was associated with decreasing symptoms (i.e. PTSD and dissociation) and increased capacities (i.e. adaptive functioning, emotion regulation). An ongoing waitlist randomized controlled trial (RCT) evaluating a participant-informed revision of the TOP DD Network programme, which is called the Finding Solid Ground programme (Brand et al., 2022; Schielke et al., 2022), shows early promise; specifically, the group who participated in the programme showed greater symptom decline than did the waitlist group (Brand, 2023b).

There has been one published RCT for the treatment of CDDs (Bækkelund et al., 2022) of a group psychoeducational treatment for CDDs. The treatment and control groups did not differ in outcomes at the end of the intervention. At six-month follow-up, however, CDD clients who participated in the programme displayed significant improvements in PTSD symptoms, general psychopathology, and psychosocial functioning. The authors speculated that these findings may indicate the need for more gradual exposure to emotionally challenging work.

Most dissociation-informed psychotherapy research has been outcome-focused to determine which treatments ‘work.’ There have been clinical reports identifying what clinicians and researchers believe is helpful in working with severely traumatized and highly dissociative clients (e.g. Brand, 2001, 2023a; Gold et al., 2001; van Minnen & Tibben, 2021). Many CDD experts believe a carefully-paced, phasic approach is essential (Herman, 1992; ISSTD, 2011; Myrick et al., 2015), which is emphasized in expert consensus treatment guidelines (i.e. ISSTD, 2011). This phasic approach is underscored by principles of safety, stabilization, and symptom management (Herman, 1992, 2023; ISSTD, 2011). Some authors, however, have posited that individuals with CDDs do not need stabilization or a phasic treatment approach (e.g. van Minnen & Tibben). To the contrary, they encourage immediate and intensive trauma processing (van Minnen & Tibben, 2021). This debate is important to note because many authors believe that processing trauma before clients are ready to do so (e.g. have appropriate symptom management skills) can lead to destabilization (see Brand, 2023a, for further review of this debate). Clients’ and therapists’ perspectives on approaches that are beneficial are needed to inform this debate.

1.2. The importance of understanding client and therapist perspectives of treatment

1.2.1. Client perspectives

There has been little attention given to researching clients’ perceptions of their processes and outcomes of dissociation-focused psychotherapy. Most treatment studies for CDD clients have been outcome-focused and quantitative in nature. Quantitative research supports that dissociation-informed treatment is beneficial, although there has been no research to answer how and why it works beyond quantitative predictors of outcomes (e.g. therapeutic alliance predicting good outcomes; Cronin et al., 2014). It is important to understand client experiences of psychotherapy processes and outcomes, as such experiences and viewpoints may form clients’ expectations (Brooks et al., 2020; Wampold & Imel, 2015) and highlight effective parts of the therapy (Levitt et al., 2016). These perspectives could illuminate difficult-to-measure processes and outcomes, such as finding meaning, constructing new self- and other-narratives, and gaining insight, among other nuanced experiences (Locher et al., 2019) that may be missed by most symptom-focused quantitative analyses.

1.2.2. Therapist perspectives

The clinical literature has been essential for informing clinicians about the treatment of CDD individuals. While community clinicians in a survey study reported using interventions that were generally aligned with expert clinical recommendations, community clinicians tended to under-emphasize psychoeducational interventions that support stabilization (Myrick et al., 2015). It is essential to understand CDD-clinician perspectives because they have valuable insight from their clinical expertise. Because dissociation and CDDs are often misunderstood (Kumar et al., 2022; Nester et al., 2022), there is also a critical need to investigate therapists’ perspectives regarding training in treating CDDs. Therapists face unique, emotionally intense, and often challenging dynamics in psychotherapy with dissociative clients, such as resistance, traumatic transference, and countertransference (ISSTD, 2011; Pearlman & Saakvitne, 1995). Many therapists believe more training on dissociation and CDDs is needed and helpful (Kumar et al., 2022). The TOP DD Network study (Brand et al., 2019) doubled as psychoeducation for CDD clients and basic dissociation training for clinicians.

1.3. Investigating significant aspects of psychotherapies and the present study

Client and therapist perspectives have contributed to the psychotherapy literature regarding significant aspects of treatment (Elliott, 1985; Hilzinger et al., 2021; Timulak, 2010). In a qualitative meta-analysis about helpful treatment events, Timulak (2007) created nine meta-categories about client-reported impacts of psychotherapies: (1) Awareness / Insight / Self-understanding; (2) Behavioural change / Problem Solution, (3) Empowerment; (4) Relief; (5) Exploring Feelings / Emotional Experiencing; (6) Feeling Understood; (7) Client Involvement; (8) Reassurance / Support / Safety; (9) Personal Contact (i.e. personal human connection). Using grounded theory and a hermeneutic epistemological framework, Levitt and colleagues (2006) found that clients identified the significant aspects of therapy, including discussions of their engagement in therapy, the therapy environment, out-of-session processing, the therapeutic relationship, therapist characteristics, and therapeutic interventions. These studies suggest people find significance in the treatment itself (e.g. interventions), their change processes (e.g. processing thoughts and feelings), and outcomes (e.g. empowerment). These studies, and a broader body of significant moments psychotherapy literature (Timulak, 2010), have used qualitative methods to understand these meaningful treatment aspects; yet, no known study has used qualitative methods to assess CDD clients’ and therapists’ perspectives about significant or helpful aspects of CDD treatment. As CDD treatment contains unique processes (e.g. Brand, 2001; Brand et al., 2022), it is essential to understand how those processes align with and diverge from general psychotherapy processes to understand what is of meaningful help.

The purpose of the present study is to qualitatively evaluate clients’ and therapists’ perspectives on the helpful and meaningful aspects of participating in the TOP DD Network programme. Previous studies about the TOP DD Network have emphasized quantitative results of the programme (see Brand et al., 2019), whereas the present study seeks to examine reports of both processes and outcomes related to the programme from clients’ and therapists’ lived experiences. It is our hope to elevate these voices to inform trauma- and dissociation-related treatment research.

2. Methods

2.1. Participants

Once institutional review board approval was obtained, recruitment materials were shared via listservs for mental health professionals and with therapists who had participated in an earlier TOP DD study. Interested therapists were informed to invite a client who they were treating for DID, dissociative disorder not otherwise specified (DDNOS), or OSDD. To participate, participants had to be at least 18 years of age, able to read English, and able to reliably access internet. Participants could enroll only if both a client with a CDD and their therapist were both willing to participate in the study. In this paper, we include participants who provided relevant qualitative data, but not all participants in the parent study provided qualitative data. See Brand et al. (2019) for more full-sample details.

In all, 88 clients participated with a mean age of 42.63 (SD = 9.60). Clients were internationally located: 37.5% United States, 22.7% Norway, 8.0% Canada, 5.7% Australia, 5.7% Netherlands, 4.5% Sweden, 3.4% United Kingdom, 2.3% India, 1.1% New Zealand, and 4.5% Other. Clients were predominantly female (85.2%), although 10.2% were male. They identified as mostly white (81.8%) and some identified as Asian (3.4%), Black (3.4%), Latinx and/or Hispanic (1.1%), and ‘other’ (5.7%). Most had at least a college degree (53.4%). In terms of CDDs, clients had been diagnosed with either DID (64.8%), DDNOS (26.1%), or OSDD (4.5%). Consistent with the theory that CDDs are trauma-related, clients had been diagnosed with comorbid posttraumatic stress disorder (85.2%), acute stress disorder (6.8%), and/or other specified trauma – and stressor-related disorder (11.4%). (Note that therapists reported their clients’ diagnoses upon initiating the programme and could report multiple diagnoses, so these above percentages do not add up to 100%.)

A total of 113 therapist-participants were included and were also located internationally (i.e. 39.8% United States, 19.5% Norway, 8.0% Canada, 6.2% Australia, 5.3% Netherlands, 5.3% Sweden, 4.4% United Kingdom, 2.7% India, 0.9% New Zealand, 2.7% ‘other’). Most indicated being female (77.0%) and others indicated being male (17.7%). Further, most were majority white (86.7%), although some were Asian (1.8%), Latinx and/or Hispanic (0.9%), and ‘other’ (5.3%). Therapists hailed from many disciplines including psychology (39.8%), psychiatry (17.7%), social work (13.3%), nursing (1.8%), expressive therapy (1.8%), and other write-in responses (20.4%), such as ‘marriage and family therapy.’ The most commonly endorsed preferred theoretical orientation was psychodynamic (36.3%), followed by ‘other’ (26.5%).

2.2. Procedure

Participants completed an online screening survey after indicating informed consent; if both met inclusion criteria (see above), we emailed them a link to a baseline survey with demographic, quantitative, and qualitative measures. Participants were then emailed access to the psychoeducational programme and survey links every six months for two years. The educational materials were developed based on the research team's decades of clinical and research experience with CDD clients including a survey of CDD psychotherapy experts (Brand et al., 2012), expert CDD treatment guidelines, and feedback from people with lived experience of complex dissociation. The research team created educational video transcripts as well as skills-based journaling and practice exercises. Those materials were then reviewed by CDD client stakeholders who gave feedback. 45 short videos featured the fourth author providing education about a variety of topics. Participants could determine when and how often to watch the videos and work on the exercises. The researchers suggested that participants watch the videos and complete assignments outside of therapy sessions, but this was not required.

The psychoeducational programme was informed by an integrative theoretical perspective, drawing from psychodynamic, cognitive–behavioural, and humanistic theories (see Brand et al., 2019, for more details). The psychoeducational materials addressed the effects of trauma (e.g. PTSD and CDD symptoms), symptom management and emotion regulation techniques, and functions of unsafe behaviors among CDD clients. The materials emphasized that unsafe behaviors can be attempts to manage trauma-related experiences and emotions. Participants were encouraged to work on grounding, separating past trauma from present, and developing healthier methods of regulating themselves. Self-compassion and acceptance of inner experiences were consistently emphasized.

Participants could access the psychoeducational materials for two years, after which they completed multiple quantitative measures (see Brand et al., 2019) and open-ended, free-text questions, including the following: ‘Could you tell us what (if anything) you found helpful or useful about the educational programme?’; ‘Could you tell us what (if anything) you found enjoyable or meaningful about being involved in this study?’ Those questions are consistent with the body of research about significant events in psychotherapy (see Timulak, 2010), which often assess what was most helpful and/or meaningful about psychotherapeutic treatments. We analyzed the responses to those two questions for the present study.

2.3. Analytic method

To explore the helpful and meaningful aspects of programme engagement, qualitative data from client and therapist responses to the two open-ended, post-survey questions were analyzed using framework analysis (Ritchie & Lewis, 2003), a codebook thematic analysis approach. We analyzed data through a critical-realist paradigm. The first, second, third, and fourth authors collaboratively chose framework analysis because it is a suitable method for applied, multidisciplinary mental healthcare research with data from multiple stakeholder perspectives (Gale et al., 2013). After familiarization with all of the data, the first and second authors collaboratively, inductively, and iteratively coded the data. Using the full dataset, they both independently created codes, being descriptive meaning units, that were grounded in the data (e.g. ‘the programme facilitates consistency and accountability’). The first and second author discussed their codes and came to consensus on them. They then created a defined codebook with those codes alongside any notes needed for clarity. That codebook was reviewed by the third author who was also familiar with the data through prolonged engagement. Upon reflections and insights offered by the third author, the codebook was refined to include new codes for data not well-captured in the original structure. No new codes were added to the codebook after this refinement. The first and second authors then each independently coded the qualitative data, using the codebook as the analytical framework, with a high rate of agreement (91.92%). Discrepancies in coding were discussed and resolved in subsequent meetings between the first, second, and third authors. After charting and mapping the codes to identify patterns and relationships, we generated three primary themes and multiple subthemes to encapsulate the participants’ perceptions.

The authors represent an interdisciplinary research team with clinical experience caring for individuals living with CDDs, varying levels of clinical expertise, and qualitative research experience. We conducted this analysis guided by the framework of understanding CDDs as traumagenic (i.e. trauma model of dissociation), consistent with the theoretical underpinnings and aims of the TOP DD Network programme under study. To ensure the methodological integrity of this project and trustworthiness of our findings, we kept an audit trail and employed several strategies, including consistently practicing reflexivity to understand the role of researcher perspectives, the first author keeping a reflexive journal, collecting data from both clients and therapists, prolonged data engagement, consensus, researcher triangulation, and peer debriefing with field experts (Nowell et al., 2017).

3. Findings

We created three superordinate themes to capture domains of identified helpful and/or meaningful aspects of the TOP DD Network programme and study: (1) Components of the Programme (client n = 66; therapist n = 101); (2) Change-Facilitating Processes (client n = 58; therapist n = 83); (3) Outcomes (client n = 41; therapist n = 17). All three themes had subthemes describing specific aspects of the components of the programme, change processes facilitated by the programme, and outcomes facilitated by the programme. See Table 1 for an overview of the hierarchical thematic structure.

Table 1. Thematic Structure and Frequencies (Client N = 88; Therapist N = 113).

Theme	Subtheme	Client: % (n)	Therapist: % (n)
Components of the Programme		75.00 (66)	89.38 (101)
	Content of the Programme	60.23 (53)	61.06 (69)
	Structure of the Programme and Study	31.82 (28)	69.91 (79)
Change-Facilitating Processes		65.91 (58)	73.45 (83)
	Heightened Human Connection	25.00 (22)	21.24 (24)
	Receiving External Empathy and Compassion	22.73 (20)	18.58 (21)
	Contributing to Something Bigger	21.59 (19)	33.63 (38)
	Improved Therapeutic Work and Relationship	21.59 (19)	34.51 (39)
Outcomes		46.59 (41)	15.04 (17)
	Insight	21.59 (19)	4.43 (5)
	Increased Hope	9.09 (8)	2.66 (3)
	Self-Compassion	19.32 (17)	6.20 (7)
	Improved Safety and Functioning	14.77 (13)	3.54 (4)

Themes were interrelated; that is, programme-related components, change process, and outcomes often overlapped and were considered helpful and/or meaningful. We conceptualized the components of the programme to precede change-facilitating processes, which preceded outcomes. Subthemes often related directionally to one another. See Figure 1 for the thematic map. All themes and subthemes were shared between clients and therapists; the levels of importance placed on specific domains varied between these groups, however.

Figure 1. Thematic Map of Helpful and Meaningful Aspects of the TOP DD Network Programme.

There were some responses that were not included in superordinate themes because they did not answer the research questions. For example, three clients and two therapists reported the programme was helpful without specifying which aspects were helpful. Four clients reported being unsure if the programme was helpful, and two endorsed general or vague negatory responses (e.g. ‘no’). Overall, 13 therapists offered hindering aspects, suggestions for improvement, and acknowledgment that their clients were not a good fit for the programme. Below, we review themes and subthemes, using illustrative quotes. We report quotes with the identification of whether the participant was a client or therapist.

3.1. Components of the programme

Sixty-six client- and 101 therapist-participants identified components of the TOP DD Network programme as helpful and meaningful aspects of participation. This overarching theme has two subthemes: (1) Content of the Programme and (2) Structure of the Programme and Study. Both clients and therapists evaluated content and structure as helpful and/or meaningful; however, therapists gave more weight overall to the program’s structure than did clients.

3.1.1. Content of the programme

In this subtheme, 53 clients identified programme content as a helpful and/or meaningful aspect of the programme. Clients found the programme’s focus on safety and stabilization to be helpful and/or meaningful. For example, one client said: ‘Whilst I think I already knew a lot of the content (at least at some level) it really helped to reinforce that learning & refocus my attention on my/our own safety’ [Client]. Many clients found the programme to be helpful and/or meaningful because it addressed their specific problems and was relevant to them. More specifically, many clients identified the psychoeducational aspects of the programme that were helpful and/or meaningful, such as ‘info on trauma and PTSD, basic info about dissociative symptoms and patterns’ [Client]. Several other participants identified that psychoeducation regarding symptom management skills (e.g. grounding, containment, emotion regulation skills) was helpful and/or meaningful. For example, one client explained the personal significance of skills-based psychoeducation:

Being older and having been diagnosed with DID for many years we found the study interesting. I wish that we had something like this when we were first diagnosed. There were a lot of techniques and information that would be of immense benefit to the newly diagnosed. [Client]

Therapists (n = 69) similarly found the content of the programme to be generally helpful. Multiple therapists indicated that content was useful for resistant clients; for example, one participant stated the following: ‘the ideas present and suggestions, and even though my client often did not or was not able to actually do the exercises, they were thought provoking and I believe she internalized some of the information.’ [Therapist]. For therapists, the focus on safety and stabilization was important: ‘The consistent focus on the notion of safety, and creative ways to talk about it and work with it. Super helpful.’ [Therapist]. Like clients, they believed the programme’s psychoeducation and exercises were helpful for their practice with their specific client, and for their own education (e.g. ‘Learning some things. Being reminded of others. Remembered there are other aspects … than ‘my favourites.’ [Therapist]).

3.1.2. Structure of the programme and study

Twenty-eight clients referenced the way in which the TOP DD Network programme was structured to be helpful and/or meaningful. These clients appreciated the systematic nature of the programme. For example, one client shared: ‘I really like the structure it gave me to understand that is going on inside of me’ [Client]. Several clients noted that the programme’s careful pace was helpful (e.g. ‘helpful that I had two years in which to complete it’ [Client]). Clients viewed the paced structure and accessible nature of it, such as simple language and digestible psychoeducational videos, as helpful for their understanding and engagement. Some clients cited reinforced instruction as helpful. For example, one participant noted that presentation of information allowed for many self-states to engage with the programme: ‘I found it very helpful for some of the repeated practices and information packaged slightly different ways during the course because different parts got a chance to respond to different videos’ [Client]. Being able to re-access materials at any time was perceived as helpful by clients because they could engage with relevant work between therapy sessions.

Seventy-nine therapists also valued the structured, paced approach of the programme. More therapists than clients noted the structure of the programme and study design to be helpful and/or meaningful. Interestingly, they believed the structure was both helpful for pacing clients’ work (e.g. ‘I appreciate that my client can go through the programme at a pace that's right for her.’ [Therapist]), and for building their own competence working with CDDs (e.g. ‘the systematic way of building competence’ [Therapist]). Therapists found it helpful and meaningful to be able to proceed in phases; that is, ‘step by step through all the difficulties and problems’ [Therapist] and in ‘manageable chunks’ [Therapist]. Like clients, some therapists found it useful that clients could return to materials, especially when contending with dissociative processes: ‘Some parts of my client have been viewing the videos separately from the main personality’ [Therapist].

3.2. Change-facilitating processes

A total of 58 clients and 83 therapists identified change-facilitating processes as helpful and/or meaningful aspects of their participation in the programme. This superordinate theme comprises four subthemes: (1) Heightened Human Connection, (2) Receiving External Empathy and Compassion, (3) Contributing to Something Bigger, and (4) Improved Therapeutic Work and Relationship. In our framework, we conceptualized clients and therapists to find all of these domains relatively equally helpful and/or meaningful, although therapists emphasized improvements in the therapeutic relationship more than clients did.

3.2.1. Heightened human connection

Some clients (n = 22) viewed feeling more connected to others as a helpful and/or meaningful aspect of participating in the programme. These clients identified that the programme facilitated feeling ‘not alone,’ which was valuable. For example, one client reflected: ‘It helped me to know that what I was experiencing in my life was also common with others and not just because my therapist said so’ [Client]. Being a part of the international TOP DD Network programme gave some clients a sense of community and, thus, broader connection (e.g. ‘knowing that there are people out there who cares about people who are living with DID, and connecting with others who are living with DID’ [Client]). Some participants also noted that they felt supported by the programme in that they felt connected to the speaker in the videos.

Similarly, 24 therapists identified the sense of heightened human connection as helpful and/or meaningful parts of the programme. Some therapists noted that it was helpful and/or meaningful to witness their clients’ increased sense of connection to others from the programme (note: participants did not have any means of communication with each other). Therapists reported they also felt more connected to others, including other professionals, by being involved in the programme. One participant described: ‘I was very touched, sometimes I feel lonely, when working with these clients, and it was reassuring that this profound work was done’ [Therapist]. This sense of professional connection extended to include a sense of community and support. Several therapists noted that this support provided them with validation, heightened confidence, and clarity in the psychotherapeutic space. For example, one participant said: ‘what I've been nagging about, was now also told by experts in the field. It made my concerns more ‘real’’ [Therapist].

3.2.2. Receiving external empathy and compassion

Empathy and compassion from the programme itself were helpful and/or meaningful change catalysts for clients and therapists. Specifically, 20 clients generally noted that the empathic approach to healing in the programme was significant, which included general kindness, encouragement, and demonstrations of understanding. One client explained: ‘Evidence of real understanding has more meaning than i can explain’ [Client]. Clients identified validation as a particularly significant piece of receiving empathy and compassion from the programme, including: ‘Having the way I feel, and why I do certain behaviors validated so clearly and compassionately’ [Client]. Direct discussions of dissociation were validating for clients (e.g. ‘I found it very validating to see questions asked on experiences I have in my life that never seem to make sense. It made me feel less freakish and extreme.’ [Client]).

Altogether, 21 therapists identified receiving empathy and compassion as helpful and/or meaningful. Therapists found it significant to see the ways in which the programme conveyed compassion to their clients (e.g. ‘The videos were so validating of my client's experience.’ [Therapist]). The therapists often remarked that it was meaningful and helpful that the programme treated clients with respect and compassion, rather than in a blaming and stigmatizing way. They identified that they themselves also received empathy and compassion, reassuring their work and professional trauma- and dissociation-related paths. For example, one therapist explained: ‘the materials were very encouraging reminders and validation for my understanding and approach to people with complex trauma’ [Therapist].

3.2.3. Contributing to something bigger

In total, 19 clients identified that being part of a larger social cause, that is, a study designed to benefit individuals with CDDs, was helpful and/or meaningful to them. These social domains included contributing to research to further CDD treatment and helping others with CDDs. For instance, one participant said: ‘Well, the researcher in me really find this programme enjoyable, meaningful and important to get out to so many more patients who struggles out there’ [Client]. Generally, these clients believed they were doing something meaningful. Multiple clients recognized the stigma around dissociation and how participating in the TOP DD Network programme and study, with direct discussions about dissociation, helped them work against this harmful social context:

I have heard so few talk about dissociation. I found it comforting to listen to someone talk about what I struggle with. That made it easier for me to accept that I have these problems and that I have them for a reason. [Client]

Thirty-eight therapists described contributing to something larger than themselves as helpful and/or meaningful. Some of them indicated that it was significant for their clients to participate in something that would serve their community (e.g. ‘It provided some very real meaning and importance to my client to help others, he is proud of that – and it gave him a voice as well.’ [Therapist]). Further, therapists found it personally meaningful to contribute to research and the improvement of CDD treatment, a population which they reported being committed to serving. Therapists also recognized the stigma around dissociation and CDDs, and explained that working against this context was helpful and meaningful. Accordingly, one participant related: ‘This category of patients are not correctly diagnosed and treated in my country, I like to participate in all the ways I can to change this and I feel supported in this mission by your study, and what it will bring’ [Therapist].

3.2.4. Improved therapeutic work and relationship

Some clients (n = 19) described that the programme was significant for their therapeutic work and/or the alliance with their therapists. Some of those clients highlighted that the programme provided space for them to be more productive in therapy sessions; for example, one participant reported: ‘The skills I've learned and a lot of the thinking I did during the study gave me and my Therapist more time to other important things during our meetings’ [Client]. Others noted that the programme facilitated their therapy sessions becoming more focused (e.g. ‘It also helped guide the direction of my therapy sessions a bit which was useful.’ [Client]). Clients noted that the programme facilitated change because they had the ability to independently engage with materials, which helped them hold themselves accountable. Some clients indicated that the therapeutic relationship was also enhanced by engaging in the programme, often citing that it was helpful and/or meaningful to work toward a common goal with their therapist (e.g. ‘neither me or my therapist knew much about dissociation or DID so it was helpful that we learned together … it helped me to work with my therapist’ [Client]).

As noted above, therapists (n = 39) weighed this pattern of meaning as important more often than did clients. Some therapists noted that the TOP DD Network programme was helpful because it helped garner client engagement and support working through resistance (e.g. ‘It lent a solid framework to keep coming back to with my client which was very helpful given her push-back to traditional treatment options’ [Therapist]). They often noted that therapeutic processes were deepened through engagement in the programme. For example, one participant stated: (‘It has brought more vitality into the therapeutic process. It has given a much safer feeling about the therapeutic process’ [Therapist]). Like clients, therapists appreciated that the programme helped therapy sessions become more focused, especially with issues of dissociation ‘on the table.’ Therapists placed high importance on the programme strengthening their therapeutic relationship.

3.3. Outcomes

Clients were more outcome-focused than therapists when identifying helpful and/or meaningful aspects of the TOP DD Network programme. In all, 41 clients noted their outcomes were helpful and/or meaningful, compared to 17 therapists. Nevertheless, both clients and therapists identified aspects of the following four outcome-related subthemes as helpful and/or meaningful: (1) Insight, (2) Increased Hope, (3) Self-Compassion, and (4) Improved Safety and Functioning.

3.3.1. Insight

Many clients (n = 19) indicated they gained insight through the programme. Clients indicated that they gained a sense of clarity. One participant noted that they gained such clarity by the end of the programme: ‘Just as I was ending the study, things started to fall into place’ [Client]. Specifically, clients gained insight into their sense of self, awareness about their dissociative processes, symptoms and issues, desires and positive feelings, and healing. For instance, one participant said:

The programme absolutely transformed my life and gave me more room to think about what I want out of my life. It freed up space in my life in a way that wasn't imaginable before, and made me realise just how profound my ‘safety’ issues were and how much they prevented me from living. I didn't have a lot of regular outward self-harm and was surprised by how much the programme applied to me and how much intense unsafe stuff lied underneath. [Client]

Some therapists (n = 5) indicated gaining insight as well. These therapists either reported gaining insights about their particular clients through the programme (e.g. ‘I found out more about my client's unsafe behaviors than I previously knew.’ [Therapist]) or their practice, including increased awareness that they were moving too quickly with their client and needed ‘to slow down parts of the therapeutic process, especially skill development’ [Therapist].

3.3.2. Increased hope

Increased hope was the least frequently mentioned outcome-related aspect; eight clients and three therapists indicated increased hope as such an outcome. Clients in this subtheme generally found participating in the study instilled hope (e.g. ‘This study gave me hope’ [Client]). Some participants indicated engaging in the programme gave them hope despite clinicians who may misunderstand working with CDDs. For example, one participant stated: ‘the study gave me understanding and hope while I fight with the therapist who wants to treat attachment and does not care for parts’ [Client]. Clients pinpointed that the programme gave them hope for the future and for healing (e.g. ‘I look forward to looking back on this one day and knowing this had been my home and my new beginning’ [Client]). The therapists in this subtheme gained hope either because of their specific client’s improvements, or because they felt more competent treating clients with CDDs; for example, one therapist indicated it was meaningful ‘that there is hope because there is a meth[o]d of working with this’ [Therapist].

3.3.3. Self-compassion

Seventeen clients described ways in which they garnered ‘more self-compassion’ [Client] from the programme. These clients achieved positive self-understanding and self-relationships in myriad ways; for example, some participants highlighted that they believed they deserve safety after participating in the programme. One participant wrote: ‘The programme helped me to understand why it is so important to get safe, and how I deserve (and desire!) the safety I didn't have in my childhood’ [Client]. Further, a participant expressed that they became more compassionate with self-states who they had not previously accepted (i.e. ‘I also learned not to be afraid of more dangerous parts of myself and now understand that they did what they did to save me/us. I feel more empathy for all the parts.’ [Client]). Such acceptance of and compassion for self and self-states was a common sentiment among clients.

Seven therapists also noted that increased self-compassion was a helpful and/or meaningful part of participating in the programme. Some therapists reported that it was significant to experience their clients becoming more compassionate with themselves (e.g. ‘my client … is highly functioning, but faces sometimes unhealthy and severe inner criticisms. She has become more mild with herself.’ [Therapist]). Therapists also expressed that they became more compassionate with themselves in their work and, thus, more confident. For instance, one participant noted: ‘It is nice to discover that i [haven’t] misunderstood everything about this condition, we are doing good work’ [Therapist].

3.3.4. Improved safety and functioning

Thirteen clients expressed that they found their improved safety and functioning to be a helpful and/or meaningful aspect of participating in the programme. These participants noted that they became safer through the programme and gained increased capacities (e.g. more coping skills to handle safety issues, ability to enjoy life). Further, these participants reported that they relied on dissociation less to function and feel safer. For example, one participant explained:

I have become much safer. I only had one or two burning episodes after I started the programme and only one a year after the lessons stopped. I think my coping skills are so much stronger. My first line of defense is grounding instead of dissociating. [Client]

Four therapists noted that their clients’ improved safety and functioning was a meaningful aspect of their engagement; for example, some therapists reported their clients engaged in less NSSI (e.g. ‘Last year [my client] has done slightly better, with no self harm.’ [Therapist]). Other therapists reported that their clients had a greater capacity to manage safety due to the programme. Therapists’ reports of improved client functioning were congruent with that of clients.

4. Discussion

The purpose of this study was to explore the helpful and meaningful aspects of participating in the TOP DD Network programme, a web-based psychoeducational programme that was developed as an adjunct to psychotherapy for clients with CDDs. Client- and therapist-participants found that engaging in the TOP DD Network programme and study had significant aspects. We created three superordinate themes based on participants’ reflections about what was important for them: components of the programme, change-facilitating processes, and outcomes. Each of the themes had subthemes. Regarding components of the programme, participants described the content of the programme and the structure of it as helpful and/or meaningful. They identified significant aspects related to change processes including heightened human connection, receiving empathy and compassion, contributing to something bigger, and improved therapeutic work and enhanced therapeutic relationship. They also reported notable aspects related to outcomes: enhanced insight, hope, self-compassion, safety, and functioning. According to clients’ and therapists’ perspectives, the TOP DD Network programme was beneficial due to an interplay of these ingredients. This study suggests that the TOP DD Network programme led to enriched psychotherapeutic processes and outcomes. Our findings are consistent with the broader body of literature about significant events in psychotherapy (Levitt et al., 2006; Timulak, 2007, 2010), yet with nuanced implications for CDD clients and therapists.

Most clients and therapists identified the components of the programme as helpful. They indicated that the safety- and stabilization-focused, psychoeducational content of the TOP DD Network programme was salient and relevant. These findings are consistent with expert guidelines and literature suggesting that psychoeducation focused on safety and stabilization is a helpful aspect of CDD treatment (Brand et al., 2012, 2022; ISSTD, 2011; Subramanyam et al., 2020), and in healing from complex trauma (e.g. Brown, 2004; Herman, 1992). Our findings highlight that such psychoeducation may lead to insight, self-awareness, self-compassion, empowerment, and feeling validated, all of which are common client-identified impacts of psychotherapies (Timulak, 2007). These findings provide additional support for the phasic treatment model for treating CDDs that is elaborated upon in expert consensus treatment guidelines (ISSTD, 2011). Specifically, clients and therapists indicated that it was helpful and meaningful that the programme emphasized safety, stabilization, and trauma-informed psychoeducation.

The structure of the TOP DD Network programme was helpful and meaningful for many participants. For example, the structured nature of the programme allowed for repeated engagement with the videos, and journaling and practice exercises, which participants indicated improved treatment. The identification of structure as significant is congruent with treatment guidelines (ISSTD, 2011) and myriad clinical approaches to treating complex trauma and dissociation (Brand et al., 2022; Brown, 2004; Herman, 1992), all of which recognize structured, carefully paced psychotherapy as essential. Intensive, rapid trauma processing treatments (e.g. van Minnen & Tibben, 2021) that skip over stabilization of safety have been suggested to be helpful for some individuals with CDDs; this is possible, as most trauma-related psychotherapies are helpful for some traumatized people some of the time. Yet, the present study suggests that a phasic approach is significantly helpful across CDD cases. Indeed, attempting to process trauma too early or too quickly in psychotherapy may destabilize some clients with CDDs (Brand et al., 2012, 2023a; ISSTD, 2011), whereas carefully paced, phasic treatment that prioritizes psychoeducation and skills-building prior to in-depth trauma processing yields better outcomes and less dropout than pure exposure therapy for people with complex PTSD (Cloitre et al., 2010; D'Andrea & Pole, 2012). More research is needed to understand the nuances of which approaches are helpful for whom, and in what contexts.

More qualitative research that illuminates stakeholder perspectives is also needed to inform treatment development. The TOP DD Network programme has been further refined based on feedback from research participants (not included in the present study) and developed into the Finding Solid Ground programme (Brand et al., 2022; Schielke et al., 2022). Building upon the TOP DD Network programme, the Finding Solid Ground programme provides structured psychoeducation about trauma, its effects, and ways to safely manage symptoms. Interim analyses indicate that the Finding Solid Ground programme provides greater improvements in symptoms than individual therapy alone (Brand, 2023b).

In the present study, clients and therapists valued the increased sense of human connection, empathy, and respect they experienced through the TOP DD Network programme. Empathy is a key component in treating clients with complex trauma and dissociation (Brand, 2001; Brand et al., 2022; Steele et al., 2001). Empathy allows clients to feel that they are deserving of positive change (Watson et al., 2014). Clients and their therapists reported it was helpful and meaningful to feel acknowledged and respected through the programme. Considering the stigma that faces individuals who seek treatment for dissociation (Brand et al., 2016, 2022; Nester et al., 2022), holding and showing respect and understanding for clients who dissociate is imperative; according to our participants, one of the helpful aspects of this programme was this empathy.

Some participants described that it was helpful and meaningful for them to contribute to something larger than themselves by participating in the study and contributing to developing a treatment they believed could help others with CDDs. While this significant aspect was undoubtedly shaped by participants’ awareness of being in a research study, these findings also have implications for psychotherapy with people with CDDs. Herman (1992) originally proposed three phases of trauma recovery: (1) safety and stabilization, (2) trauma processing, and (3) reconnection and integration. More recently, Herman (2023) proposed a fourth stage, justice. Advocating for social justice serves as a powerful tool for empowerment and healing among people who have experienced complex trauma and dissociation (Brown, 2004; Dupuis-Rossi & Reynolds, 2018; Herman, 2023). Thus, for some participants, it seems that taking part in the study (and thereby helping future others as well as themselves) served as a form of reparative social justice. Because participants found contributing to social justice and research helpful, it may be empowering for some clients with CDDs to take action within their social environments (Brown, 2004; Dupuis-Rossi & Reynolds, 2018; Herman, 2023), even during the safety and stabilization phase. Given the scarcity of clinicians that are adequately trained in treating CDD clients (Kumar et al., 2022; Nester et al., 2022), programmes like the TOP DD Network programme that provide psychoeducation to clients with CDDs while training clinicians may help reduce treatment barriers.

Both clients and therapists engaging in the programme indicated their therapeutic relationship and their treatment improved, although therapists placed more emphasis on this than clients. For example, some therapists described that working toward a shared goal with their client was helpful in building the therapeutic alliance. The therapeutic alliance is an essential factor in psychotherapy with clients with complex trauma (e.g. McElvaney et al., 2023) and predicts better treatment outcomes among CDD clients (Cronin et al., 2014). The co-creation of narratives between client and therapist may facilitate clients’ new helpful understandings of self and the world (Levitt et al., 2016). Bordin (1979) theorized that the alliance was essential to create treatment expectations, which may then be crucial to facilitate the benefits of therapy. The TOP DD Network programme could foster strong therapeutic alliance and, thus, shape expectations about treatment and the steps necessary for healing. Those expectations may reciprocally facilitate the effectiveness of the programme (Wampold, 2007). For CDD therapists struggling with building the working alliance with a CDD client, psychoeducation like that provided in the TOP DD Network programme may be beneficial for enhancing the alliance, although research is needed.

Some therapists found their own or their client’s newfound insight, hope, self-compassion, increased safety, and enhanced functioning to be helpful and meaningful outcomes of the programme. These outcomes are consistent with the quantitative analyses of the programme which found evidence of reductions in dissociation, PTSD symptoms, and emotion dysregulation, and improvements in adaptive capacities (Brand et al., 2019). The qualitative outcomes identified here are consistent with the theoretical bases and goals of the programme (Brand et al., 2019). Interestingly, participants identifying outcomes as helpful and meaningful treatment aspects may suggest that such outcomes uniquely interact with and facilitate change processes related to the programme; for example, if someone is more self-compassionate, they may be more consistently engaged in therapy (Germer, 2023). Perhaps the outcomes identified by clients and therapists, like increased self-compassion, were significant because they further facilitated healing change processes.

4.1. Limitations

Although the present study provides valuable insights into the helpful and meaningful aspects of the TOP DD Network programme and study, it is not without limitations. These findings must be interpreted within their context, especially being a research study, which facilitated participants feeling they were ‘contributing to something bigger’ and, thus, shaping that particular subtheme and likely others. Another limitation is that the participants were primarily white and female; thus, our findings may not be transferable to more diverse groups.

Over a third of therapist-participants reported preferring a psychodynamic theoretical orientation. Their theoretical orientation may have shaped their integration of the programme into their treatment as well as their conceptualization of their client, such as understanding their client’s dissociation through the psychodynamically-informed trauma model of dissociation. Their clients may have shared similar understandings (through working with their therapist or otherwise). Given this, as well as their engagement in the present study’s psychoeducational programme about both trauma and dissociation, clients and therapists may have both worked within the framework of the trauma model of dissociation. Our findings should be understood in that context.

There may have been a response bias such that participants may have overestimated the helpful aspects of the programme. The methodology of using open text boxes limited our inability to probe for in depth responses. Future research should employ in-depth approaches to more deeply understand the ways in which interventions benefit participants. Unhelpful aspects of the programme were not included in this study, as the aim of the study was to explore helpful and meaningful aspects of the programme, consistent with the general significant events psychotherapy literature (see Timulak, 2010). Future research should explore unhelpful or hindering aspects of the programme to more wholly understand its processes and impacts.

Conclusion

In the present study, we aimed to understand the helpful and meaningful aspects of the TOP DD Network psychoeducational programme through CDD client and therapist perspectives. Through our framework analysis, we found that two main components of the programme (Theme 1) were experienced as significant: the psychoeducational content and paced structure. Change-facilitating processes (Theme 2) encouraged by the programme were also viewed as important aspects, including a heightened sense of human connection, receiving external empathy and compassion, contributing to something bigger, and an improved therapy and therapeutic relationship. Many participants experienced the following improved outcomes (Theme 3): insight, increased hope, self-compassion, and increased safety and functioning. In tandem, these findings further illuminate how the TOP DD Network programme functions, and qualitatively suggest that it can be valuable for both clients and therapists. As such, the TOP DD Network programme, now refined and known as the Finding Solid Ground program (Brand et al., 2022; Schielke et al., 2022), may offer applied support for CDD clients and therapists. Our findings also bear broader psychotherapy implications for working with clients with CDDs, including the value of carefully paced, phasic treatment that emphasizes safety and stabilization.

Ethics approval

This study was approved by Towson University’s Institutional Review Board (Protocol #14-A091).

Data availability

Qualitative data are not available to protect the confidentiality of participants.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was funded by generous donations. We are appreciative of our funders: Michael Hemmer, ANS Research, Brad Foote, M.D., Anne Bartoletto and family, the Constantinidas Family Foundation, and many additional generous donors.