Experience of adapted cognitive behaviour therapy to address sexuality problems after traumatic brain injury: A qualitative study

ABSTRACT

Although sexuality has been shown to be negatively impacted in up to half of individuals who sustain traumatic brain injury (TBI), few studies have sought to evaluate the efficacy of targeted interventions. Gaining insight into the participant experience of undergoing treatment for post-TBI sexuality changes is a crucial aspect of intervention evaluation. This study aimed to investigate participants with TBI experience of undergoing eight sessions of a novel CBT intervention designed to help both couples and singles improve sexual wellbeing after TBI. Eight participants (50% male) with moderate-severe TBI, and a mean age of 46.38-years (SD = 13.54), completed a qualitative interview. A six-phase reflexive thematic analysis approach was used. Despite variability in participant characteristics, the findings suggested that participants with TBI experience reflected that of a positive treatment journey characterized by high levels of enjoyment and satisfaction. Key themes identified included contextual factors that preceded treatment, factors that facilitated treatment engagement, outcomes derived from the treatment experience, and feedback provided on reflection. The results not only provide an enriched understanding of the client experience of the intervention but provide corroborating preliminary evidence of efficacy for this novel CBT intervention in addressing complex and persistent sexuality problems after TBI.

KEYWORDS:

• Sexuality
• Cognitive Behaviour Therapy
• Traumatic Brain Injury
• Rehabilitation

Introduction

Sexuality is a complex phenomenon encompassing sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy, and reproduction (World Health Organisation, 2010). Across the lifetime, sexuality grows and changes in its meaning and expression through thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles, and relationships. Traumatic brain injury (TBI) has been shown to have a significant impact on physical function, cognition and behaviour, social relationships, and self-identity (Ponsford et al., 2014). Among the myriad of changes that can arise after TBI, sexuality has been found to be negatively impacted in approximately 50% of cases (Hentzen et al., 2022; Ponsford, 2003; Robert et al., 2019). Whilst hypersexuality or increased sexuality associated with disinhibition and impaired brain function has been found to occur in approximately 7–15% of cases (Simpson & Baguley, 2012), the majority of individuals report reduced sexuality otherwise known as hyposexuality (Hibbard et al., 2000; Ponsford, 2003; Sander et al., 2012). TBI-related hyposexuality changes are typically characterized by diminished sex drive and/or arousal, erectile dysfunction, difficulty with orgasm, decreased frequency and quality of sexual encounters, reduced ability to satisfy a partner, negative feelings about sexuality, and higher levels of dissatisfaction with sexual functioning (Bivona et al., 2016; Downing et al., 2013; Hanks et al., 2013; Hibbard et al., 2000; Moreno et al., 2013; Ponsford, 2003; Sander et al., 2012). Low self-esteem, loss of self, decreased communication, relationship changes, alterations in body image, and depression are also common consequences of TBI that intersect with reduced sexuality outcomes (Gill et al., 2011; Ponsford, 2003).

Classified using the biopsychosocial model, extant literature indicates that the aetiology of post-TBI sexuality changes is both complex and multidimensional (Moreno et al., 2013). Damage to neuroanatomical regions, altered neurotransmission, and neuroendocrine dysfunction may play a role in disrupted sexuality (Aloni & Katz, 1999; Rothman et al., 2007), whilst the onset sexuality problems does not appear to be differentiated by sex, injury severity, or time post-injury (Bivona et al., 2016; Colantonio et al., 2010; Ranganathan et al., 2016). Empirical studies have identified older age, fatigue, pain, mobility restrictions, and reduced independence in activities of daily living as key factors associated with hyposexuality changes in this clinical population (Cohen, 2003; Fraser et al., 2020; Goldin et al., 2014; Kreuter et al., 1998; Ponsford, 2003; Ponsford et al., 2013). Depression is a strong predictor of reduced sexuality following TBI (Fraser et al., 2020; Hibbard et al., 2000; Ponsford et al., 2013; Sander et al., 2013), although research has struggled to disentangle the degree to which other psychological factors, including anxiety, low self-esteem, and antidepressant medication contribute to poor sexuality outcome (Downing et al., 2013; Longworth et al., 2018; Ponsford, 2003; Ponsford et al., 2013). Cognitive and behavioural impairments after TBI including problems with social communication, egocentricity, emotional regulation and anger, empathy, emotion recognition, and self-monitoring can both cause and exacerbate increased carer burden, shifts in roles, and interpersonal relationship breakdowns (Gill et al., 2011; Moreno et al., 2013). Taken together, these factors can pose significant barriers to re-establishing intimacy and recognizing a partner's sexual needs in existing relationships as well as building new relationships post-injury (Aloni & Katz, 1999; Fraser et al., 2020; Gill et al., 2011; McDonald, 2013; Moreno et al., 2013; Sander et al., 2013). Research further indicates that the effects of TBI on sexuality are not circumscribed to the injured individual, with partners similarly reporting globally reduced sexuality including lower sexual desire, dissatisfaction with sexuality, and decreased frequency of sexual encounters (Bivona et al., 2016; Downing & Ponsford, 2018). As a result, there is a need for treatments to be developed that guide the individual with TBI and/or their partner to navigate and adjust to sexuality, communication, and relationship changes as a couple post-injury.

Despite sexuality being a major determinant of quality of life, there continues to be limited emphasis on sexuality service delivery within inpatient and community brain injury rehabilitation settings (Moreno et al., 2015). This gap in healthcare appears to be underpinned by a complex interplay of clinician discomfort, inadequate opportunities for education and training, lack of resources and peer-reviewed guidelines, and an absence of evidence-based treatments (Arango-Lasprilla et al., 2017a, 2017b; Dyer & Das Nair, 2014; Fraser et al., 2021; Hwang et al., 2022; Latella et al., 2018). To date, only a handful of descriptive case reports (Aloni et al., 2007; Dombrowski et al., 2000; Medlar, 1993) and single case studies (Simpson et al., 2003; Simpson et al., 2016) investigating treatment of sexuality problems after TBI have been completed. Previous studies have generally focused on evaluating standard medical and sex therapy techniques to address male sexual dysfunction (e.g., premature ejaculation and erectile dysfunction) or hypersexuality-related problems, with limited emphasis on accommodating TBI-related sequelae. Methodological limitations of previous research, including lack of scientific rigour, poor study design, inconsistent outcome measures, and small sample sizes, further undermine the reliability and validity of evidence in this area. Consequently, there continues to be significant gaps in knowledge regarding what specific techniques and treatments are efficacious in ameliorating persistent and complex post-TBI sexuality problems (Turner et al., 2015).

Cognitive behaviour therapy (CBT) is a widely researched, time-limited psychotherapeutic approach that has been shown to be efficacious in the treatment of a wide range of disorders, including depression and anxiety and sleep and fatigue in TBI cohorts (Little et al., 2021; Nguyen et al., 2017; Ymer et al., 2021), as well as sexual dysfunction in non-TBI populations (Andersson et al., 2011; McCabe, 2001; Ter Kuile et al., 2010; Trudel et al., 2001). A core aim of CBT is supporting individuals and couples to achieve more balanced and affirming self-talk and behaviour through challenging distorted thinking and maladaptive behaviours (Avasthi et al., 2017; Eisenberg et al., 2015; Frühauf et al., 2013; Metz et al., 2017). Key elements of therapy include psychoeducation, cognitive restructuring to promote flexible thinking and behaviour, relaxation and mindfulness-based approaches to decrease anxiety, conflict resolution and relationship enhancement, psychosexual skill exercises, and relapse prevention (Eisenberg et al., 2015; Metz et al., 2017). Given the propensity for low self-confidence, mood disturbances, social communication difficulties, and relationship problems to negatively impact sexuality after TBI, the use of CBT techniques to not only reframe negative thoughts and emotions but also develop communication and interpersonal skills for singles or couples may be beneficial for improving sexuality after TBI.

The efficacy of CBT in ameliorating TBI-related sexuality problems is yet to be determined. To address this gap, the current authors developed a novel, individualized CBT intervention and piloted the treatment in a single case series comprising nine adults with TBI (Fraser et al., 2022). Designed to address complex and persistent TBI-related sexuality changes irrespective of age, sex, gender, sexual orientation, marital status, time post injury, injury severity, and type of sexual issue, the CBT treatment guide encourages a collaborative and flexible approach. Whilst the quantitative findings provided preliminary evidence of feasibility and efficacy on primary and secondary outcome measures of sexuality, self-esteem, and goal attainment (Fraser et al., 2022), there is a need to consider the perceived experience of the intervention from the perspectives of individuals who completed it. Obtaining an understanding of the reality of individuals experience of this novel treatment is not only a critical aspect of the overall treatment evaluation but provides a novel contribution to extant literature, establishing a foundation for future qualitative studies in this area. As such, this study aimed to investigate individuals’ experiences undergoing eight sessions of a novel CBT intervention designed to ameliorate complex and persistent post-TBI sexuality problems.

Materials and methods

Design

This qualitative study employed a reflexive thematic analysis approach situated within a research paradigm of critical realism, which assumes an ultimate reality but acknowledges that experiences and interpretations of reality are shaped by culture, language, and context (Alvesson & Sköldberg, 2017; Braun et al., 2019; Braun & Clarke, 2006, 2013, 2021a). What distinguishes reflexive thematic analysis from other qualitative approaches (e.g., grounded theory or narrative analysis), is that reflexive thematic analysis is more akin to a transtheoretical tool or method rather than a theoretically informed framework that imposes a set of analytic techniques and philosophical assumptions (Braun & Clarke, 2021a). Moreover, reflexive thematic analysis acknowledges the role of the researcher's subjectivity as an analytic resource and encourages reflexive and deliberate engagement with the data and interpretation (Braun & Clarke, 2020). Given the lack of psychometrically sound measures sensitive to the impact of TBI-related sexuality interventions, this qualitative approach provided greater scope to investigate complex and nuanced phenomena that may be difficult to capture quantitatively (Donnelly et al., 2020). The study design relied on an inductive (i.e., data driven) approach such that themes were developed from the data rather than the authors using a list of preconceived themes. The main analytical goal was to identify patterns of meaning across the data that could clarify the subjective experience of the intervention from the perspectives of participants.

Participants

Eight participants with TBI (4 male, 4 female) were recruited in the current study via two mechanisms: (1) community advertising to clinicians treating individuals with TBI, and (2) through an established research project that involves collection of follow up outcome data across individuals’ recovery after TBI. Sampling was purposive with all participants who completed the intervention contacted via telephone about the study. One participant withdrew from the parent study due to extenuating circumstances (i.e., relocating due to family illness) and therefore, did not complete treatment or the semi-structured qualitative interview. All other participants were otherwise interviewed. Participants were eligible to receive the intervention if they (a) were aged 18–65 years, (b) had sustained complicated mild to very severe TBI as classified by brain imaging (i.e., evidence of abnormality) and length of time in post-traumatic amnesia (PTA) (e.g., classified as mild when the duration of PTA is less than 24 h, moderate for 1–7 days, severe for 7–28 days, and very severe for more than 28 days), (b) were greater than three months post injury, (c) had spontaneously self-reported sexuality problems. The following exclusion criteria were used: (a) presence of other neurological disorder, (b) history of psychotic disorder, (c) current alcohol or drug abuse, (d) insufficient English language or cognitive capacity to complete questionnaires or therapy tasks, and (e) sexual dysfunction prior to TBI. Participant 7 and Participant 8 completed the intervention with their respective partners as a couple. All participants received comprehensive rehabilitation after their injury, however, at 0.9-33-years post-injury, the majority had moved beyond the active rehabilitation phase and were living in the community. Only one participant resided in a supported accommodation setting, with all other participants living independently, either alone or with a partner. All Participant characteristics are displayed in table 1.

Table 1. Participant demographic characteristics.

Variables		Participant
		1	2	3	4	5	6	7	8
Demographic data
	Age (years)	49	31	64	63	56	33	33	41
	Sex	Male	Female	Male	Male	Female	Female	Male	Female
	Education (years)	12	18	14	12	15	16	14	18
	Preinjury relationship	Single	De-facto relationship	Married	Married	De-facto relationship	De-facto relationship	De-facto relationship	Married
	Baseline relationship	Single	Single	Married	Married	Single	Single	De-facto relationship	Married
Injury characteristics
	Cause of TBI	Bicycle Accident	MVA	Work-related injury	MVA	MVA	MVA	Fall	Pedestrian stuck by car
	PTA duration (days)	70	16	21	0.5	20	8	68	23
	Worst GCS score	3	15	8	15	14	3	3	13
	Time since injury (years)	33	6	6	2	3	1	1	0.90
	CT brain imaging	Petecchial haemorrhages in frontal and paraventricular regions	Frontal contusion, subarachnoid haemorrhage, contrecoup injury with contusion in the orbitofrontal region	NAD	Interhemispheric subarachnoid hemorrhage	NAD	Fractured parietal and temporal bones, contusion and intracerebral haemorrhage in temporal region, extra-axial haemorrhage	Fractured occipital lobe, subfalcine herniation, inferior frontal contusion, grey and white matter loss, haemorrhage	Left subdural hematoma, contusions in right frontal and temporal regions, fractured left temporal bone

Note: TBI: Traumatic Brain Injury; MVA: Motor Vehicle Accident; PTA: Post Traumatic Amnesia; GCS: Glasgow Coma Scale; CT: Computed Tomography; NAD: No Abnormality Detected.

Intervention

Treatment was delivered by two clinical psychologists, KH and LB, licensed to treat clients with CBT and experienced in working with adults with TBI. KH and LB had 13-years and 25-years of clinical experience, respectively, and were registered clinical psychologists with extensive experience delivering CBT. The intervention was available to singles and couples and consisted of eight 60-minute sessions delivered weekly and one booster session scheduled approximately two months later. In cases where a medical basis to the sexuality problem was clinically indicated, the individual was offered the option of undergoing a medical review. In accordance with the CBT approach, sessions were centred on challenging automatic thoughts, unhelpful assumptions, and dysfunctional beliefs about sexuality and sexual behaviour, with the understanding that, by challenging maladaptive thoughts (e.g., negative thoughts related to one's sexual appeal) and behaviours (e.g., avoidance of intimate contact), individuals and couples may rewrite sexual scripts and potentially achieve more balanced and affirming self-talk and behaviour. Consistent with a CBT for sexual dysfunction approach (Metz et al., 2017), a biopsychosocial approach informed both assessment and treatment, with the view that addressing relevant physical and medical, psychological and neuropsychological, and social and relationship factors would be crucial for sustainable improvement in sexuality satisfaction. Relevant to the TBI cohort, the CBT approach also acknowledges the multifactorial nature of sexual health, affirming that psychological and social factors may indirectly affect sexual wellbeing even when physiological functioning is unaffected. This therapeutic framework asserts that there is no set definition of a “normal” sex life, and that every person is different in the way they experience and express sexuality. Expanding what sexuality is and what it means to be a sexual being was therefore, a key premise of the intervention.

A treatment guide comprising 12 modules with accompanying handouts was used to assist each therapist deliver the intervention (Table 2). Modules were based on what is known about the aetiology of sexuality changes after TBI and were designed to address broader aspects of sexual health, function, and wellbeing. Ensuring that treatment was modified to accommodate TBI-related cognitive sequelae was a crucial component of the intervention design and delivery (Gallagher et al., 2019). Educational scaffolding, frequent breaks, visual handouts, written summaries, repetition, and simplification of concepts were some of the key strategies adopted by each clinical psychologist.

Table 2. Treatment structure and modules.

Module		Title	Objective
Session 1–2
	1	Assessment and formulation	Work closely with the individual/couple to develop a shared understanding of the problem and collaboratively set treatment goals.
	2	Psychoeducation and goals	Explore the individual's/couple's understanding of sexuality and provide psychoeducation surrounding sexuality, TBI, and overall health and wellbeing.
Session 3–7
	3	Self-esteem and body image	Explore self-esteem or body image and identify and adjust biased expectations, negative self-evaluations, and rules and assumptions.
	4	Understanding arousal	Define desire and arousal, explore dimensions of touch, identify brakes and accelerators.
	5	Reframing thoughts	Explore links between thoughts, emotions, and behaviours. Employ cognitive restructuring techniques that allow the individual/couple to feel in control of their sexuality.
	6	Communication	Understand expressive and receptive listening skills using modelling and in-session coaching.
	7	Relaxation	Teach mindfulness, breathing, and progressive muscle relaxation techniques to enhance sexual experiences.
	8	Psychosexual skill exercises	Practise exercises targeted to the individual's/couple's sexual problem.
	9	Social skills	Establish relevant techniques to increase positive and rewarding social behaviours and decrease negative social behaviour.
	10	Sleep and fatigue management	Identify practical strategies to improve sleep and manage physical and mental fatigue.
	11	Medical review	Assess neurological/medical basis to sexuality problem.
Session 8
	12	Relapse prevention	Summarize skills and content learned throughout treatment and generate plan for managing setbacks.

Note: TBI, Traumatic Brain Injury.

The design of the intervention was based upon careful consideration of the multidimensional nature of sexuality and the diversity of complex changes that can arise after TBI. The focus of session 1 was building rapport with the individual or couple and conducting a comprehensive assessment to inform individualized clinical formulation. Session 2 was characterized by the provision of psychoeducation and collaborative goal setting. Flexibility in the delivery of sessions 3–7 was paramount to ensure that the therapeutic content was meaningful and tailored to the individual or couple and their presenting problem, clinical formulation, and personal goals. Each clinical psychologist applied clinical reasoning to identify, select, and modify relevant modules to suit the needs of the individual or couple. As a tangible representation of each module, the purpose of the accompanying handouts was to provide structure to the treatment, summarize key information, and aide delivery and consolidation of information in the context of psychoeducation as well as the exploration of cognitive and behavioural strategies. Session 8 was characterized by consolidation of relevant treatment content and skills, exploration of relapse prevention, and goal review.

Treatment sessions were audio recorded and treatment integrity monitoring forms were completed by an independent practitioner. Treatment integrity was assessed across three domains, (1) overall adherence to elements common in a CBT approach, (2) adherence to the chosen module(s) used in the session and, (3) therapist competency in module delivery. As outlined in Fraser et al. (2022), the delivery of the treatment indicated “acceptable” to “excellent” ratings across the three domains.

Procedure

Ethics approval was granted by the relevant ethics committee. Individual semi-structured interviews were conducted independent of intervention delivery within two weeks of completing the eighth treatment session. Semi-structured interviews were conducted by EF, a female Doctor of Philosophy (Clinical Neuropsychology) candidate trained in qualitative research methodology, via teleconferencing (videocall) between May 2021 and April 2022. Individuals with TBI had prior contact with EF during recruitment for the intervention trial and were aware of the purpose of the study as it was part of the researcher's PhD research. The interviewer undertook interviews from a private meeting room or from home. Participants were at home for interviews. At the start of each interview, participants were provided with an explanation of the purpose of the interview, examples of the types of questions that would be asked, and clarification that participation was voluntary. The importance of confidentiality was also explained, and the interviewer confirmed with each participant that there was no persons present in the environment in which the interview was taking place. Participants provided verbal consent which was recorded. The interviewer made reflexive notes following each interview and debriefed with authors between interviews to encourage reflection of pre-conceptions and personal experiences that may influence authentic interpretation of the lived experiences of participants. Information redundancy regarding data saturation was considered methodologically inconsistent and not used in this study (Braun & Clarke, 2021b). On average interviews lasted 44.25 min (range 38 min to 49 min). All interviews were audio-recoded and transcribed verbatim.

A semi-structured interview schedule was designed to explore individuals’ experiences of the intervention, with follow-up questions asked in response to participants’ accounts. The interview schedule focused on four broad areas that included (1) Sexuality after TBI, (2) Treatment experience, (3) Treatment structure, and (4) Treatment feedback. The development of the interview schedule was informed by a comprehensive review of the literature in combination with the authors’ experience of clinical practice within TBI rehabilitation. The interview schedule was reviewed and updated in an iterative way throughout the interview process (refer to Appendix for final interview schedule). It was important to consider the potential impact of TBI-related cognitive and communication impairments on interviews (Lloyd et al., 2006; Paterson & Scott-Findlay, 2002). Given that individuals with TBI may have difficulty answering open-ended questions due to cognitive and/or communication impairments, a more active, collaborative, and scaffolding approach was adopted. Specific strategies included simplified language, repeating and clarifying questions and responses, asking for specific examples to elicit more detailed responses, and summarizing throughout the interview. There was also careful consideration given to selecting the appropriate time of day for the interview and offering frequent breaks throughout (Gould et al., 2019; Paterson & Scott-Findlay, 2002)

Data analysis

An iterative, reflexive thematic analysis approach provided a rich description of the data set and highlighted distinct themes. De-identified interviews were transcribed verbatim and reviewed for translation accuracy. The study followed the six-step process outlined by Braun and Clarke (2006). Three members of the research team familiarized themselves with the data through repeated reading of the transcripts (phase 1). After familiarization, initial codes were generated semantically (phase 2) and sorted into candidate themes and sub-themes (phase 3). NVivo Software for Qualitative Research version 12 was used to organize codes (NVivo Qualitative Data Analysis Software, 2018). Authors reviewed the candidate themes and codes with reference to the data (phase 4). Themes were then refined and named (phase 5) and relevant extract examples, a report, and thematic map were produced (phase 6). The reflexive thematic analysis process was recursive with codes and themes established through a process of moving back and forth across the six phases (Willig & Rogers, 2017).

Published criteria for good qualitative research helped to support the analytic rigour of the current study (Braun & Clarke, 2020; Nowell et al., 2017; Tracy, 2010). Methods to increase analytic rigour included member checks throughout the interview by summarizing ideas and reiterating participant responses to ensure that the meaning had been correctly understood.

The authors explicitly acknowledged that the interviewer's (EF) perspectives were actively situated within the data collection, analysis, and interpretation. The authors also recognize the role of researchers’ subjectivity and its relationship with the investigated phenomenon is inherent to reflexive thematic analysis. The author's clinical and research experience working as in a brain injury rehabilitation context and knowledge of this novel CBT intervention for sexuality difficulties after TBI is likely to have shaped their interpretation of the data. The authors were aware that this was the lens through which data were analyzed and, as a result, made efforts to continually return to the data as well as ensure involvement of the broader research team. Hence, to strengthen the reliability of data coding and interpretation, two researchers reviewed all transcripts and presented their interpretation and descriptions of themes to a third researcher independent of the data collection and analysis (Nowell et al., 2017). Emphasis was placed upon ensuring that themes were distinct and fully realized and judiciously illustrated using data extracts. The results outlined in this paper reflect the final conceptualisations of the themes developed by the authors. To maintain participant anonymity, all participants have been allocated a participant number and identifying information has been removed from quotes.

Results

The experience of the intervention was characterized by four themes: (1) Context preceding treatment, (2) Factors facilitating engagement, (3) Outcomes derived from experience, and (4) Feedback on reflection. Rather than a uniform experience centred on “fixing” an individual's sexual problem in eight sessions, the treatment was conceptualized as an individualized journey in itself, interwoven into the lifelong process of sexuality discovery and expression. Whilst there was an “endpoint” to this treatment, it was apparent that there was an underlying personal journey that remains ongoing: “It's a never-ending process, isn't it? There's always work to be done” (Participant 8). Themes and subthemes are represented in the thematic map in Figure 1.

Figure 1. Thematic map displaying participants’ experiences of the intervention.

Four distinct squares representing each qualitative theme displayed horizontally. There are three to four circles included within each square which represent the subthemes. Underneath the squares is an arrow representing the treatment journey across time.

Context preceding treatment

This theme relates to the way in which sexuality is not openly talked about after TBI, which meant this was a new experience for participants. They each brought unique personal experiences of post-injury sexuality changes and treatment expectations into the intervention. These factors provided the background from which treatment engagement and benefits can be understood and contextualized.

Sexuality is not spoken about

Sexuality changes are common after TBI, however, the topic is infrequently raised with individuals with TBI in rehabilitation. This sentiment was reflected by a number of participants noting that “it's something that isn't normalized enough in society” (Participant 2) and that “it didn't get touched” (Participant 5) by healthcare professionals during rehabilitation.

Sexuality is not the same after TBI

Some participants acknowledged the pervasive impact of the brain injury on their identity and sense of self: “I am so different to who I used to be and until someone brings it to your attention, you’ve just motored on and gone ‘pretty good thanks’ and it’s like ‘oh no, I am actually really different actually’” (Participant 5).

Whilst all participants endorsed sexuality problems consistent with reduced sexuality, or hyposexuality, it was evident that the experience of, and response to, sexuality changing after TBI was specific and unique to each case. For one female participant, the TBI caused a sudden intolerance to touch as a result of changes in sensations: “Things just creeped me out when they touch me … I was thinking I was having tactile hallucinations, like the bugs under the skin … ” (Participant 5). For participant 6, it was “the emotions, the feelings, the communication” that had been affected post-injury, whilst Participant 8 felt disconnected from her body and, subsequently, her sexuality: “I felt like I had a disconnect between my body and me … I did not feel in touch with my body” (Participant 8).

With regards to participants’ response to sexuality changes, one couple chose to put their relationship intimacy aside after learning of the post-injury onset of erectile dysfunction: “We just sort of thought ‘oh well, that's a side effect of this drug’, so we’ll, you know, put that in a box and we’ll come back to that” (Participant 3). Of the three males who experienced erectile dysfunction post-TBI, one participant endorsed experiencing significant and ongoing shame and embarrassment: “I am actually ashamed … I feel like a girl. I feel like there is nothing of me sort of thing” (Participant 1).

Open mind going into it

Expectations of what the treatment would be like varied across participants. For the majority, they had no expectations but kept an open mind: “I had no idea what the structure was going to be or anything … I was going in open minded because I was willing to try anything” (Participant 7). Other participants were expecting “to get some tips” (Participant 6) and “learn something” (Participant 5), whilst one couple was hoping to “have a better understanding of why this is occurring” (Participant 8). Two participants “thought it would be to rectify stuff from the accident” (Participant 5) and cure the physical sexual dysfunction: “I thought you would be the fixer … the remedy” (Participant 1).

Factors facilitating engagement

This theme provides insight into key elements that supported engagement in the treatment. With regards to modality of delivery, completing the treatment via teleconferencing (videocall) did not appear to be a barrier to engagement: “It felt like she was in the room” (Participant 8). In fact, some participants liked the convenience and found “it was much easier” (Participant 3), whilst others felt more comfortable doing it online: “It was easy here to just sit here and talk and maybe because it was about sexuality, it wasn't too confronting because it's a little bit removed than being the room” (Participant 5).

Safe space to talk

The therapeutic benefit of simply having a space that affords individuals with TBI permission to talk about sexuality, and be heard, was a key factor that supported all participants’ engagement in the treatment: “I suppose it was just good to just talk about it all because I haven't really … like throughout my recovery I haven't had anyone hold that space for that topic” (Participant 2). Coming into such a space allowed all participants to feel “clarified and validated” (Participant 5) as well as reassured that they “were not the only ones” (Participant 7).

Empathy from the therapist

Establishing rapport between client and therapist was an integral component of the treatment and formed the foundation from which therapeutic benefits could arise: “I think with any therapy, if you don't have connection, it is not going to contribute to healing at all” (Participant 2). “Professional” (Participant 8), “personable” (Participant 5), “open-minded” (Participant 6) and “empathetic” (Participant 8) were all key attributes that supported the clinical psychologist's ability to establish positive therapeutic relationships with each individual participant. All participants were made to feel a genuine sense of interest and care from the therapist in getting to know them as individuals across their treatment journey: “It was really very good. It was tailored. That's what I mean, I felt like she knew our relationship, she knew what was going on” (Participant 8). The warmth and empathy conveyed by the therapists was particularly important given the nature of the treatment focus: “Some of the things we spoke about is a place I wouldn't go … you know talking openly about masturbation … that's not a thing I would normally talk to people about” (Participant 3).

Informative materials

For all participants, a key tool which facilitated engagement in the treatment was the provision of written handouts. For some, reading the handouts prior to the treatment session allowed them to come prepared with questions and discussion topics: “I like the fact that [therapist] would send me the handouts um to read over, to printout and read over prior to her meeting, and then I could sit there and really think – not all in one go but just to read them for an hour or so a day, go away, do stuff, come back and think I want to make that point or I really need to discuss this bit or … ” (Participant 4). During treatment, Participant 3 acknowledged that he was not able to “pick up on everything” in the session and therefore, liked that the handouts provided “clarification.” Another participant indicated that “the handouts were the things that were generating thoughts in my mind” (Participant 4). Participants appreciated that they could go back over the material to serve as a reminder of what they covered with the therapist: “It’ll be when I do finally decide to go on a date, I’m actually going to flick through and go through it again” (Participant 5). One participant sent the handouts to family and friends so that they could “understand more of what the brain injury part is and some of the things that are not being spoken of … that people are not aware of” (Participant 6). Couples equally benefitted from the written material, with one participant referring to the handouts as a “relationship bible” (Participant 8) that they could revisit them when needed. On the other hand, one participant felt that the material was too “basic” for their level of understanding and would have preferred the information on the handouts to have gone “more in depth” (Participant 2).

Outcomes derived from the experience

This theme represents participants’ experience of what the treatment was like and the effects it had on sexual wellbeing. All participants felt the experience of the eight sessions was one that was positive and tailored: “The suggestions [the therapist] made were really meaningful. They weren't just like airy-fairy like, ‘Oh, try this, try that.’ It was relevant” (Participant 8). There were important nuances, however, in the experience of the treatment journey for individuals with partners who chose to do it alone versus the couples that completed it together. Beyond the experience, learning and building knowledge and positive shifts in mindset and behaviour were identified as positive therapeutic outcomes.

A personal project

Unique views emerged from the experiences of two participants who completed the treatment “as a personal project” (Participant 4) without their partner. Justifying this decision was the notion that the sexuality problem was with the individual with the TBI: “I sort of figure that most of the problems are with me” (Participant 3). It is also important to consider that the partner may simply not wish to be involved: “She didn't feel comfortable being involved in it, so I had to respect that” (Participant 4). There was the perspective that healthy relationships allow couples to grow together but also independently as people. “I have an understanding that we are very different individuals even after all these years of marriage, and I say we’re a unit, we’re one, but we are very different” (Participant 4). Improving sexuality and relationship intimacy, however, may be a slower process when only one party is involved, with more work to be done beyond the eight sessions: “I was given the tools, I’ve just got to find the moment to initiate that conversation” (Participant 3). Nonetheless, completing the sessions without the partner did not preclude the treatment from having a positive impact on relationship connection, intimacy, and communication: “She's certainly the beneficiary of it as far as I’m concerned, and that's fair enough, that's what marriage is all about” (Participant 4).

Enriching the relationship

Several positive outcomes emerged for the couples who chose to enter the treatment and “do it together” (Participant 8). At 10 months post-injury, one participant detailed significant shifts in the relationship dynamic: “Everyone kept saying, ‘Oh, you’re doing so well.’ I’m like, ‘Well, no, ‘cause you don't live with us.’ This is not good. We aren't happy and we are just existing. We’re not living. It's horrible” (Participant 8). In this case, Participant 8 attributed the rescuing of the relationship, i.e., “She saved us”, to the treatment and the support they received in identifying triggers and ways to deescalate behavioural outbursts as well as identifying ways to prioritize the relationship and set aside time to check in with each other. Indeed, individuals with TBI expressed gratitude toward their partner for choosing to be involved: “I think I’m quite lucky in that sense, I’ve got a very understanding partner and we can really work on it together” (Participant 7). Another benefit of engaging as a couple was the opportunity to gain insight into the partner's perspective: “That was really helpful ‘cause I got to see [partner's name] perspective. And that was the crux of it really, how it's impacting him … ” (Participant 8). It also allowed the sessions to be framed around the relationship, “The benefit was I think we really got a chance to just work on our relationship without the sex” (Participant 7), and, at a basic level, provided an opportunity for the couple to come together and communicate: “It brought us together, just even her sessions, we were able to communicate effectively and go, ‘Yeah, this is where we’re at’” (Participant 8). Upon completion of the treatment, there was also the benefit of having a shared foundation of knowledge on which both individuals could draw: “And the fact that we can use this ongoing now, so even though the sessions have finished, we’ve got that information … [to] go back and reflect on” (Participant 8).

Learning about sexuality

Central to the treatment journey was a gradual but supported process of learning about sexuality. There was a broadening in individuals’ understanding of sexuality, “I thought it was just a lot more simple and there was just so many different topics you could cover” (Participant 2), which allowed participants to redefine the meaning and purpose of sexuality within their own lives: “I think it allowed us to just think of sex outside of penetration which was really important for us” (Participant 7). For some participants, the treatment clarified the ways in which the TBI had impacted their sexuality; “Well I never even saw it in my sexuality … like I didn't join the dots” (Participant 5), whilst others benefitted from being reminded of some of the things they may have forgotten over time: “It was just a really good reminder, some of the things that we worked on, and to just bring that forth for me” (Participant 2).

Shift in mindset and behaviour

Beyond learning about sexuality, participants provided several examples of how the tailored therapeutic process had facilitated positive shifts in mindset and behaviour. Participants identified the benefit of challenging their thoughts, “Just to look at the other side or just to look at another facet, it's good overall to sort of go ‘I never thought of it that way'” (Participant 3), but acknowledged the active role of the therapist in shifting their mindset, “You do need the other person to tell you, ‘Hey, try and look at it this way’” (Participant 6). There was also evidence of participants applying CBT strategies in their everyday life: “If I’m in a situation and I know I’m starting to get annoyed at something, I just go like, 'Okay, well, it's just that feeling that's annoyance, try and control it. What do you do? Do you distract yourself? Or do you look at the situation in a different way? What's the meaning? What can you get out of it?'” (Participant 6). Importantly, not all participants were able to engage in and benefit from the CBT framework, “It made me think about things, but it didn't really change my thoughts” (Participant 1).

Individualized shifts in behaviour uniquely varied depending on the participants’ treatment experience and goals. In one case, the use of psychosexual skill exercises led to the realization that the participant was indeed capable of achieving physical arousal: “One of the things that um … [the therapist] suggested to me was to just go out and watch some porn which you know, and it was sort of like, ‘What?! Okay’ and anyway, I found out that I did actually have some function” (Participant 3). Others described a gradual shift towards opening up to romantically dating again: “I had been consciously like unavailable … in the world of dating, for 2 years and then I just, through doing my own work … I felt like I had a sign that it was time to open the doors to that again” (Participant 2). For couples, there were behavioural shifts within the relationship that centred on communication: “The take-home that we’ve got is scheduling like an hour a week or an hour a fortnight where we just touch base with each other and say, ‘How are you? What's working? Are we good?’” (Participant 8). Other behavioural changes included increasing opportunities for one couple to facilitate intimate connection within the relationship outside of sexual penetration: “[Partners name] has sort of taken on a carers role and so we find it hard to disconnect from that now. But yeah … [the therapist] gave us great ideas on how to reconnect without having that sexual penetration sort of thing. It's all about reconnecting before having that sexual, that great sex, life sort of thing” (Participant 7). Another participant endorsed achieving a similar outcome in their relationship regarding an increased understanding of the importance of touch: “The massage that used to be just on the feet, now goes to the legs and at some nights if her back is giving her trouble, I’ll give her a massage on the back to help her fall asleep and that's important too, very much so.” (Participant 4).

Feedback on reflection

Overall, participants expressed high levels of satisfaction with the treatment, indicating that they would recommend it to others: “I think it should be available to everybody, even people who aren't in relationships … That would be so good” (Participant 8). Individuals accounts of the treatment experience, however, revealed interesting viewpoints and relevant feedback related to the intervention length, content, and outcomes.

Could have done it for longer

There was a strong consensus that the treatment length was adequate for the purposes of addressing participants sexuality changes after TBI, “I think everything was just what we needed” (Participant 7), with participants emphasizing the benefits of having multiple sessions: “It was important that you spread it over that time because life does happen. Life does change” (Participant 4). Many were surprised by how much they were able to cover within the specified timeframe: “We covered a lot in 8 and we achieved a lot in 8 [sessions]” (Participant 8). Interestingly, most participants indicated that they “could have done it for longer” (Participant 1), with some individuals arguing that they would have likely benefitted from “a bit more time to actually integrate [the information]” (Participant 2). As outlined by Participant 7: “I think um if we really wanted to improve [the treatment experience], like we [would] have those 8 sessions and then we [would] have a session every two weeks or … once a month or something like that.”

Challenging and confronting

Considering that expanding people's understanding of sex and sexuality outside of traditional heteronormative views is a central facet of the intervention, it is possible that some participants felt confronted by the treatment content and discourse: “I found a lot of it, probably coming from a very strict family although it was a long time ago, I found a lot of it confronting and, um, um, and some of the, just some of the frankness, it's not the way we would sort of talk about these things you know” (Participant 3). The personal challenges associated with reconceptualising sex and sexuality were also highlighted by Participant 3: “I really can't get my head, you know, can't get my head around that you could have intercourse, or you could have, [pause], you know, you know, without actual penetration.”

Thought it would be a cure

One participant thought their physical sexual problem would resolve within 8 sessions and were disappointed when it was not: “I was hoping that it was going to change me around, turn me around straight away, like once I was finished it, it was going to turnaround, when I finished it, I was going to be performing straight away but there's been nothing, there's been no change” (Participant 1). In this case, unrealistic treatment expectations, “I would like it so that I could perform properly. Like I could perform like when I was younger” combined with cognitive difficulties including rigid thinking, memory impairment and limited self-awareness, likely contributed to a lack of tangible benefit gained from the treatment beyond simply “talking through all the problems [and] all the different things that were going on.”

Discussion

This qualitative study sought to provide an enriched understanding of the experience of completing eight sessions of a novel CBT intervention designed to help individuals and couples improve sexual wellbeing and ameliorate complex and persistent post-TBI sexuality problems. The results indicate that all participants valued the opportunity to work on sexuality as it relates to them and considered the experience to be one that was positive. The perceived experience appears to be commensurate with the quantitative findings whereby the majority of participants demonstrated sustained improvements in subjective sexuality satisfaction in combination with clinically significant goal attainment (Fraser et al., 2022). Participants’ experience of the treatment was contextualized by their unique understanding of how sexuality had been impacted by their brain injury. There was an overlay of sexuality not being adequately or routinely addressed by healthcare providers throughout their recovery that informed participants expectations, or lack thereof, for what the treatment experience would be like. This finding is underpinned by evidence suggesting that only 21-23% of healthcare professionals routinely raise the topic of sexuality with individuals after brain injury (Arango-Lasprilla et al., 2017a; Fraser et al., 2021). Failure to address sexuality is a significant gap in healthcare that not only prevents service providers from meeting the holistic needs of this clinical population but abandons individuals and couples to “sorting it out” without any professional support or guidance (Dyer & Das Nair, 2014).

Widely advocated in extant literature as the recommended approach to structuring interdisciplinary sexuality service delivery, the PLISSIT/extended PLISSIT (Ex-PLISSIT) model offers four levels of intervention: Permission, Limited Information, Specific Suggestions, and Intensive Therapy (Annon, 1976; Taylor & Davis, 2007). With permission giving at the core of the PLISSIT/Ex-PLISSIT model, the therapeutic benefit of creating an environment that legitimizes sexuality and affords permission to individuals to discuss sexuality was recognized by participants in the current study. Similarly in line with the PLISSIT/Ex-PLISSIT model, as well as existing TBI sexuality literature, there were multiple benefits associated with the provision of information that formed a key component of participants’ experience of the intervention (Dyer & Das Nair, 2014; Simpson, 2001). From a psychoeducation perspective, the treatment handouts supported delivery, understanding and consolidation of key concepts, while from a neuropsychological perspective, they served as compensatory strategies to support retention and recall of information over time (Gallagher et al., 2019). Indeed, there is a strong consensus that having frank, educated discussions about sexuality is a crucial component of the overall management of sexuality after TBI (Calabrò et al., 2019; Marier-Deschênes et al., 2019), with lack of access to information and resources constituting a key barrier to the optimization of sexual health and wellbeing in this clinical population (Moreno et al., 2015).

Framing the CBT intervention around the multidimensional nature of sexuality was an important facet of treatment associated with participants’ experience of gaining increased knowledge and an improved understanding of sexuality as it relates to them. The diversity of modules and resources combined with adopting an educational scaffolding approach were thought to contribute to a sense of collaborative learning across sessions. Moreover, the empathetic, non-judgemental, and open-minded characteristics of the therapists and their ability to each build rapport and form authentic therapeutic relationships with participants appeared to be key factors that contributed to the positive treatment experience (Avasthi et al., 2017). Participants certainly valued the role of the therapist in delivering CBT in an adapted and simplified way that fostered a new sense of control over their sexuality by allowing them to challenge their thinking and consider different outlooks as well as identify behavioural strategies that might improve the specific sexual issue. This finding not only supports previous work demonstrating the suitability of an adapted CBT approach for individuals with TBI (Hsieh et al., 2012; Nguyen et al., 2017; Ymer et al., 2021) but provides a novel contribution to the literature regarding the experience of the intervention and potential utility of implementing an adapted CBT approach at the intensive therapy level of the PLISSIT/Ex-PLISSIT model to treat TBI-related sexuality changes.

It is important to note that, based on the current findings, completing sessions as a single person, a partnered individual alone, or together as a couple did not appear to significantly impact the overall experience of the intervention. The flexibility of this intervention regarding selection and delivery of modules also appeared to be a notable strength. Regardless of age, sex, gender, time post injury, marital status, and type of sexuality issue, participants were able to receive treatment that was tailored to their presenting problem, clinical formulation, and individualized goals. Although not designed to do so, this study did not identify any clear relationship between the experience of treatment and the specific modules delivered, with participants generally reflecting on the experience of treatment as a whole, rather than a breakdown of specific modules. Indeed, there is a balance between standardization and flexibility of CBT interventions designed for individuals with TBI and ongoing consideration and review of this in future studies is recommended (Hsieh et al., 2012).

Elucidated through participants experiences in the current study, it is apparent that individuals are likely to possess varying levels of comfort with the topic of sexuality. As a construct heavily influenced by cultural norms and social regulation, sexuality can be a source of anxiety, shame, and disgust for some individuals (Goldenberg et al., 2002). Previous research suggests a small minority (approx. 7–10%) of individuals with TBI may be unwilling to talk about sexuality (Sander et al., 2012). Using language that the client is comfortable with together with educational scaffolding are recommended to support positive treatment engagement and outcomes (Avasthi et al., 2017). Another unique reflection of the treatment experience was the idea that the treatment failed to fix the physical sexual dysfunction. This finding is important to note as it suggests that treatment acceptability may be adversely impacted by unrealistic expectations. As noted in previous research, it is important that clinicians set appropriate client expectations early on (Analytis et al., 2023). Review of treatment module content and delivery is also warranted to ensure clinicians are regularly checking in with participants regarding their expectations of treatment and of the outcome of specific modules throughout the experience. In addition to this, participants alluded to the potential benefit of undergoing more sessions. Further research is ultimately needed to clarify the optimal length of treatment as well understand the potential impact of clinical, injury and cognitive variables on treatment response (Bajo & Fleminger, 2002).

Clinical implications

The evidence presented in this research provides a novel contribution to TBI and sexuality literature through accessing the perspectives of individuals related to the experience of undergoing intervention for TBI-related sexuality problems. The positive appraisals of the safe space that the intervention provided in combination with the visual handouts and clinician empathy and warmth should be promoted through future interventions. The diversity of individuals who engaged in this intervention reinforces the importance of future interventions being designed such that they can be flexibly tailored to individuals based on their presenting problem, clinical formulation, and goals. The positive effects of the psychoeducation component of the intervention supports previous research focused on developing and evaluating TBI-specific sexuality handouts, booklets, and information resources (Ahmad, 2017; Aloni & Katz, 2003; Better Health Channel, 2018; Brainline, 2008; Khajeei et al., 2019; Marier-Deschênes et al., 2020; Marier-Deschênes et al., 2021; Model Systems Knowledge Translation Center, 2011; Sander et al., 2011; Simpson, 1999; Synapse – Australia’s Brain Injury Association, n.d.). However, in accordance with the PLISSIT/Ex-PLISSIT model, psychoeducation interventions alone are unlikely to be sufficient in treating complex and persistent TBI-related sexuality problems as they fail to address the underlying biopsychosocial factors specific to each case. In the current study, the CBT framework appeared to play a role in individuals experience of the intervention through its ability to foster individualized shifts in cognition and/or behaviour whether that be in relation to confidence in dating, acceptance of sexual changes, ability to consider different perspectives, understanding sexuality and intimacy, communication with current, new, or future partners, or improved sexual function. Indeed, additional studies are required to establish fidelity of the CBT model in this context as well as identify specific components of CBT effective in treating sexuality problems after TBI. Nonetheless, the current research provides preliminary evidence of efficacy for the potential clinical use and application of CBT to treat TBI-related sexuality problems. Given participants’ overall positive experience of this treatment, evaluating the intervention in a randomized controlled trial is recommended as an area of future research.

Limitations

Several limitations should be considered when interpreting this research. First, the eight participants recruited through purposive sampling in this study are not a substantial basis for generalization. Participants were homogenous in terms of gender, race and ethnicity, sexual orientation, and educational attainment, and had received rehabilitation in the context of a no-fault accident compensation scheme following their injury. Further research with larger and more diverse samples is recommended to gain a more reliable understanding of the experience and implications of the intervention within this clinical population. Because participants voluntarily chose to complete the treatment and be interviewed it is possible that the current sample held more positive views of, and greater comfort around, sexuality. They were also aware that they were participating in a treatment study which may have given the feeling of contributing to the development of a new intervention for individuals with TBI and thus, a new meaning for participation. As a result, participants may have been biased to focus more on the positive aspects of their treatment experience leading to the authors potentially missing important information. Future iterations of this intervention, whether in a different context or in a larger efficacy trial, should seek to further evaluate the experience of the intervention to gain additional insights and different viewpoints. Further research would also benefit from exploring the views of partners as well as the perspectives of the therapists delivering the treatment.

Conclusions

Through in-depth qualitative interviews, this study provides preliminary evidence supporting the efficacy and perceived helpfulness of a novel, individualized CBT intervention for individuals with TBI who have experienced complex and persistent post-injury changes in sexuality. The unique perspectives of participants with TBI illustrated in the current study not only offer valuable insight into the experience of the intervention but provide important considerations for future research. Overall, individuals with TBI considered the treatment experience to be beneficial despite variations in age, sex, marital status, injury severity, time post injury, type of sexuality problem, and change scores on study outcome measures previously reported (Fraser et al., 2022). The findings suggest that a tailored CBT intervention may have multiple benefits for individuals and couples who experience sexuality difficulties after TBI, although further research and larger trials are needed. Indeed, the results support the recommendation for a larger clinical trial exploring the efficacy of this treatment in addressing a diverse range of post-TBI sexuality issues and its suitability for implementation on a broader scale.

Acknowledgements

The authors wish to acknowledge and thank all participants who took part in this study and contributed their time.

Disclosure statement

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

Additional information

Funding

This work was supported by the Summer Foundation, the Epworth Medical Foundation, the Transport Accident Commission, and a National Health and Medical Research Council (NHMRC) Investigator Grant (APP1174473).

Appendix

Table 1. Semi-structured interview schedule.

Sexuality after TBI		Tell me about your sexuality after your injury?
		What changes did you experience?
		How was it managed or addressed by healthcare professionals at the time?
		Why do you think your sexuality changed/did not change?
Treatment Experience		What did you think the treatment would be like before you started?
		Was it different from what you expected? Why or why not?
		What do you remember about the treatment?
		What were some of the changes you noticed in yourself and/or your relationship from participating? What things helped you achieve these changes?
		Tell me about what, if any, strategies, information, or material you liked/are likely to use in your everyday life?
		Tell me about what, if any, strategies, information, or material you did not like/are not likely to use in your everyday life?
		Did you experience any challenges engaging with the sessions or the content of the sessions?
Treatment Structure		Tell me about the experience of doing the treatment sessions online/in person (choose whichever is applicable)?
		Do you have a preference between in-person or online? Why or why not?
		How did you find the number and the length of the sessions?
Treatment Feedback		Overall, what did you find most helpful?
		Overall, what do you think could be improved?
		Would you recommend this treatment to others? Why or why not?
		Is there anything else you would like to share?