Acquired Brain Injury-Related Sexuality Measure (ABI-RSM)

Abstract

The Acquired Brain Injury-Related Sexuality Measure (ABI-RSM) is an evidence-based clinical and psychometric instrument developed to evaluate sexual health, intimate relationship dynamics, psychosexual functioning, and unmet rehabilitation needs among individuals who have sustained an acquired brain injury (ABI). Originating from empirical research conducted by Ann-Sofie Ek, Charlotta Holmström, and Eva Elmerstig (2023) at Malmö University, the instrument systematically addresses the biopsychosocial disruption often neglected within post-acute neurological care. Comprising 34 items structured around four overarching procedural themes—Background Information, Functional Ability, Sexuality after ABI, and Rehabilitation—the tool synthesizes multifaceted inquiry into post-injury lived experience. Psychometrically, the instrument captures targeted clinical constructs evaluating cognitive functions, physiological sexual responses, the valuation of intimacy, relational communication, and subjective sexual satisfaction. Methodologically, the scale integrates fixed categorical alternatives, multiple-response options, six-point Likert-type rating dimensions (anchored from 1 = not at all to 6 = very high degree), and qualitative open-ended text fields that capture nuanced personal trajectories. Internal consistency reliability analysis demonstrates robust psychometric properties across core dimensions, with Cronbach’s alpha coefficients ranging from .779 to .870 across domains, including cognitive functioning (α = .859), male sexual functioning (α = .818), female sexual functioning (α = .855), importance of sexuality and intimacy (α = .779), partner acceptance and communication (α = .830), and orgasm and satisfaction in sexual activity (α = .870). By bridging neuropsychological impairment with sexual well-being, the ABI-RSM serves as an essential assessment tool for clinicians, rehabilitation psychologists, occupational therapists, and multidisciplinary neurorehabilitation teams striving to identify clinical service deficits and implement holistic, person-centered interventions.

Keywords

Acquired Brain Injury, Sexual Rehabilitation, Neuropsychological Assessment, Psychosexual Functioning, Intimacy After Brain Injury, Sexual Health Disparities, Neurorehabilitation, Partner Communication, Brain Injury Rehabilitation, Psychometrics

Authors

The Acquired Brain Injury-Related Sexuality Measure was designed, validated, and published by a specialized interdisciplinary team of clinical researchers from the Faculty of Health and Society at Malmö University, Sweden, within the renowned Centre for Sexology and Sexuality Studies:

• Ann-Sofie Ek, PhD, RN — Centre for Sexology and Sexuality Studies, Faculty of Health and Society, Malmö University, Malmö, Sweden. ORCID: 0000-0001-6446-6553. Corresponding Email: [email protected]. Address: Malmö University, Faculty of Health and Society, SE-205 06 Malmö, Sweden.
• Charlotta Holmström, PhD — Professor / Senior Researcher, Centre for Sexology and Sexuality Studies, Faculty of Health and Society, Malmö University, Malmö, Sweden.
• Eva Elmerstig, PhD — Associate Professor, Centre for Sexology and Sexuality Studies, Faculty of Health and Society, Malmö University, Malmö, Sweden.

Purpose

The principal purpose of the Acquired Brain Injury-Related Sexuality Measure (ABI-RSM) is to comprehensively identify, quantify, and contextualize the profound unmet needs surrounding sexual health, intimacy, and sexual rehabilitation among adult survivors of non-stroke acquired brain injury. Sustaining an acquired brain injury—arising from traumatic impacts, anoxia, non-vascular infections, toxic encephalopathies, or benign neoplasms—initiates severe, long-lasting neurobehavioral, cognitive, sensorimotor, and emotional alterations. While acute medical and early neurorehabilitation pathways prioritize physical independence, ambulation, basic activities of daily living (ADLs), and gross cognitive retraining, psychosexual health is consistently marginalized, treated as taboo, or wholly ignored by healthcare providers.

Historically, clinical teams exhibit substantial reluctance, discomfort, or systemic deficits in training regarding proactive sexual assessment, leading individuals with ABI to experience isolation, shame, partner alienation, and unaddressed sexual dysfunctions. The ABI-RSM was formulated to counteract this critical clinical void. It provides an empirical, structured framework that assesses both the internal psychosexual experiences of the survivor and the external healthcare delivery ecosystem. Specifically, the instrument determines whether patients were ever approached by rehabilitation professionals regarding their sexual health, the format in which information was offered (e.g., written materials, individual psychosexual counseling, multidisciplinary couples therapy), and the exact temporal window during the rehabilitation trajectory in which these discussions took place.

Beyond evaluating healthcare service omissions, the ABI-RSM evaluates the survivor’s self-appraisal of sexual priority, the degree of relational friction or communicative ease with intimate partners, physical alterations in arousal and orgasm, and behavioral adaptations implemented by survivors. In clinical settings, the measure functions as an evaluative intake instrument and goal-setting platform, enabling rehabilitation teams to formulate tailored neuro-palliative or restorative interventions. In clinical research, it provides a standardized, replicable mechanism for tracking longitudinal psychosexual adjustments, evaluating the efficacy of sexual health psychoeducation programs, and elucidating sociodemographic and neurological predictors of relationship dissolution or sexual resilience post-injury.

Psychological Construct

The Acquired Brain Injury-Related Sexuality Measure operationalizes human sexuality not merely as a biological reflex or discrete genital mechanism, but as an integrative, multi-tiered biopsychosocial construct that encompasses neurological integrity, cognitive executive control, emotional self-regulation, dyadic communication, body image, and institutional healthcare access. The scale’s architecture reflects five key psychological and neurobehavioral dimensions:

1. Cognitive Functioning and Neurological Interferences

This construct examines the neuropsychological substrate underlying intimacy. Acquired brain injury frequently impairs working memory, sustained attention, executive planning, affective processing, and inhibitory control. Within an intimate context, cognitive fatigue, mental distraction, sensory overload, and emotional lability directly interrupt sexual arousal and erotic focus. The measure operationalizes how subjective cognitive deficits interfere with spontaneous and planned intimacy, tracking how altered speed of processing and memory impairments influence a person’s perceived sexual competence.

2. Physiological Sexual Functioning and Response Cycles

Spanning gender-specific biological domains, this dimension evaluates disruptions to the physiological phases of sexual response (desire, excitement, plateau, and orgasm) secondary to central nervous system damage, autonomic dysregulation, altered endocrine pathways, and neurogenic medications (such as antiepileptics, antidepressants, and antispasticity agents). In men, this encompasses erectile maintenance, ejaculation latency, and tactile sensory deficits; in women, it assesses vaginal lubrication, genito-pelvic discomfort, and neurosensory changes. Crucially, the construct avoids pathologizing altered biology in isolation, assessing instead how these changes interact with the survivor’s self-concept.

3. Valuation and Prioritization of Sexuality and Intimacy

Survivors of catastrophic neurological events often navigate profound identity renegotiation. This construct quantifies the subjective value placed on erotic activity, romantic partnerships, and non-coital physical closeness (e.g., holding hands, caressing, embracing). It captures cognitive dissonance where an individual may retain high sexual drive alongside low physical self-efficacy, or conversely, where sexual desire has diminished while the craving for emotional closeness and physical affection remains intact or increases.

4. Partner Communication, Acceptance, and Dyadic Dynamics

Brain injury fundamentally alters relational roles, often shifting a romantic partner into an unchosen role as a primary caregiver, which drastically destabilizes romantic and erotic equilibrium. This dimension measures the survivor’s perception of mutual understanding, freedom from sexual rejection, communicative openness regarding physical limitations, and emotional safety within the dyad. High scores on this construct denote deep communicative transparency and uncompromised partner validation, whereas low scores signify relational distress, partner alienation, sexual guilt, or unilateral pressure to perform.

5. Orgasmic Capacity and Subjective Sexual Satisfaction

Moving beyond purely physiological thresholds, this construct gauges the holistic psychological reward, affective fulfillment, and sensory pleasure derived from post-injury sexual experiences. It explores whether the individual achieves climactic release, feels satisfied with the post-injury frequency and quality of sexual interactions, or experiences frustration, anhedonia, or emotional distress during intimate contact.

Theoretical Framework

The theoretical architecture of the ABI-RSM is rooted in the convergence of three foundational paradigms within health psychology, sexology, and neuropsychological rehabilitation:

1. The Biopsychosocial Model of Sexual Health

Formulated initially by George Engel and adapted to human sexuality by contemporary sexologists, the biopsychosocial model posits that human sexual behavior cannot be reduced strictly to anatomical pathways or vascular reflexes. Neurological pathology (the biological sphere) interacts dynamically with subjective mood, self-esteem, post-injury grief, and cognitive alterations (the psychological sphere), which are further moderated by relational dynamics, social stigma regarding disability, and healthcare delivery failures (the social sphere). The ABI-RSM assesses these overlapping spheres simultaneously, positing that psychosexual disability post-ABI is frequently compounded by institutional silence rather than biological injury alone.

2. The Ex-PLISSIT Paradigm and Rehabilitation Information Deficit Theory

The instrument directly operationalizes principles from the PLISSIT model (Annon, 1976) and its expanded revision, the Ex-PLISSIT model (Davis & Taylor, 2006). This framework conceptualizes sexual intervention along a hierarchical gradient: Permission, Limited Information, Specific Suggestions, and Intensive Therapy, anchored by continuous review. The theoretical foundation of the ABI-RSM assumes that healthcare organizations systematically fail to provide the foundational baseline—Permission and Limited Information—thereby creating an “information desert” that exacerbates psychological distress, sexual dysfunction, and partner estrangement. By assessing whether, when, and how information was provided, the scale evaluates clinical adherence to normative rehabilitation standards.

3. The Good Lives Model and Disability Adjustment Paradigms

Drawing from positive neuropsychology and the Good Lives Model of rehabilitation, human well-being requires the realization of primary human goods, prominent among which are loving relationships, physical pleasure, and agency. Brain injury often strips survivors of perceived agency, precipitating an acute disruption of the “erotic self.” The theoretical framework underpinning the ABI-RSM asserts that sexual adjustment post-neurological trauma involves an ongoing process of accommodation, compensatory behavioral problem-solving (e.g., using sexual aids, timing sex around fatigue), and dyadic communication renegotiation.

Validity

The development and empirical substantiation of the Acquired Brain Injury-Related Sexuality Measure followed a rigorous psychometric framework to establish robust content, construct, and face validity:

Content and Face Validity

Content validity was established through systematic inductive qualitative inquiry combined with expert deductive clinical synthesis. The operational items were constructed directly from empirical qualitative interview investigations conducted by Ek (2010) exploring subjective lived experiences of individuals with ABI, complemented by subsequent investigations analyzing the direct narratives of partners of individuals with brain injuries (Ek, 2011). These findings were cross-referenced with established neuropsychological literature, most notably the assessment paradigms developed by Stolwyk et al. (2013). This qualitative grounding ensured that the instrument reflects real-world clinical realities, vocabulary, and challenges experienced by survivors rather than hypothetical assumptions. During pilot phases, the items underwent scrutiny by sexologists, clinical neuropsychologists, and rehabilitation medicine physicians to confirm semantic clarity, clinical utility, and comprehensive coverage of post-injury psychosexual phenomenology.

Construct and Criterion-Related Validity

Construct validity in the initial psychometric validation (Ek, Holmström, & Elmerstig, 2023) was substantiated by demonstrating expected empirical relationships across demographic, clinical, and systemic variables. The scale successfully differentiated between subgroups based on relationship status, time elapsed since injury, and rehabilitation exposure. Specifically, the instrument revealed a stark dichotomy between the reported subjective importance of sexuality (consistently rated high by participants) and the frequency of professional clinical intervention (reported as non-existent or inadequate by the vast majority of respondents), establishing high discriminative sensitivity to rehabilitation deficits.

Furthermore, convergent trends were observed between the partner communication dimensions and overall sexual satisfaction: survivors reporting higher ratings on the 6-point partner communication and acceptance scales demonstrated significantly higher levels of orgasmic satisfaction and psychological adjustment, consistent with theoretical predictions of dyadic intimacy following neurological trauma.

Reliability

The internal consistency of the Acquired Brain Injury-Related Sexuality Measure has been demonstrated through empirical testing across non-stroke acquired brain injury cohorts. The psychometric investigation by Ek, Holmström, and Elmerstig (2023) evaluated internal consistency reliability across the primary multidimensional composite constructs of the inventory using Cronbach’s alpha (α), yielding values that meet and exceed accepted thresholds for both clinical screening and psychometric research:

• Cognitive Functions Subscale: Demonstrates high internal reliability (α = .859), verifying that items measuring cognitive interference, distractibility, mental fatigue, and executive constraints during intimate scenarios measure a coherent underlying construct.
• Sexual Functions Subscale (Male Cohort): Yields excellent internal consistency (α = .818), confirming consistent measurement of physiological erectile capacity, ejaculatory response, and genito-sensory changes.
• Sexual Functions Subscale (Female Cohort): Demonstrates robust internal consistency (α = .855), confirming high psychometric stability in evaluating female lubrication, physical arousal, pelvic sensation, and post-injury biological adaptations.
• Importance of Sexuality and Intimacy Subscale: Demonstrates satisfactory internal reliability (α = .779), reflecting stability across items assessing subjective valuation of sexual activity, emotional intimacy, and physical touch.
• Partner’s Acceptance and Communication Subscale: Yields high internal consistency (α = .830), confirming reliable measurement of dyadic openness, mutual acceptance, and psychological security within intimate relationships.
• Orgasm and Satisfaction in Sexual Activity Subscale: Exhibits high internal consistency (α = .870), indicating strong homogeneity among items evaluating climactic capacity, erotic contentment, and overall subjective fulfillment post-injury.

Collectively, these psychometric indices verify that the ABI-RSM’s core dimensional modules possess high measurement precision and low standard errors of measurement across clinical populations.

Factor Analysis

In the primary empirical validation study (Ek, Holmström, & Elmerstig, 2023), the instrument’s structural integrity was derived theoretically and qualitatively from established conceptual models and prior phenomenological work (Ek, 2010, 2011; Stolwyk et al., 2013). The subscale groupings—Cognitive Functions, Sexual Functions, Importance of Sexuality and Intimacy, Partner’s Acceptance and Communication, and Orgasm and Satisfaction—were constructed as targeted clinical composite scales, which demonstrated clear internal consistency reliability across the sample.

Formal exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) with large-sample goodness-of-fit indices (e.g., RMSEA, CFI, TLI) were not fully computed in the initial cross-sectional publication due to sample size constraints inherent in clinical non-stroke ABI rehabilitation populations. However, the high internal consistency indices (α = .779 to .870) across all five composite dimensions provide strong indirect empirical support for the thematic modularity and statistical cohesion of the items within their designated domains. Subsequent psychometric validation studies involving larger multicenter cohorts are recommended to conduct formal structural equation modeling (SEM) and verify dimensional invariance across diverse neurological etiologies (e.g., traumatic brain injury vs. anoxic encephalopathy).

Instrument / Measurement Tool

The Acquired Brain Injury-Related Sexuality Measure (ABI-RSM) is structured as a multidimensional questionnaire designed for self-administration or clinician-assisted administration. Below is a structured summary of its technical design and administrative parameters:

• Test Type: Original Clinical Inventory / Specialized Neuropsychological Self-Report Questionnaire.
• Target Population: Adult survivors of acquired brain injury (traumatic, anoxic, infectious, or non-vascular etiologies) aged 18 years and older; adaptable for clinical assessment across acute, post-acute, and chronic rehabilitation settings.
• Languages Available: English, Swedish (original version).
• Item Count: 34 items capturing qualitative, categorical, and quantitative dimensions.
• Structural Thematic Divisions:
  • Theme 1: Background Information: Demographic and medical baseline (etiology of ABI, current relationship status, relationship status at time of injury).
  • Theme 2: Functional Ability: Cognitive interference, motor limitations, fatigue, and social role alterations.
  • Theme 3: Sexuality after ABI: Timing of sexual resumption, changes in sexual drive, physical responses, use of sexual aids, and dyadic satisfaction.
  • Theme 4: Rehabilitation: Institutional information receipt, timing of professional inquiries, provision of individual or couple counseling, and remaining information deficits.
• Response Formats:
  • Fixed Dichotomous / Categorical Alternatives: (e.g., Yes / No / Do not know; specific timing intervals).
  • Multiple-Choice Checklists: Allowing respondents to endorse multiple functional or behavioral adaptations.
  • Likert-Type Scales: Specifically for partner acceptance and communication dimensions, employing a 6-point scale ranging from 1 (Not at all) to 6 (Very high degree).
  • Open-Ended Qualitative Text Fields: Providing respondents dedicated narrative space to record specific personal adaptations, what strategies worked or failed, and exact topics where rehabilitation information was lacking.
• Scoring and Interpretation Procedures:
  • Dimensional Scoring: Composite subscale scores are generated for the core Likert and continuous items (Cognitive functions, Sexual functions, Importance of intimacy, Partner acceptance/communication, and Orgasm/satisfaction).
  • Categorical Needs Profiling: Dichotomous and multiple-choice items within the Rehabilitation theme are analyzed as discrete clinical performance indicators to pinpoint systemic gaps in care (e.g., percentage of patients never asked about sexuality).
  • Qualitative Thematic Mapping: Narrative entries are reviewed using content analysis to inform tailored psychological or occupational therapy interventions.

Permissions & Fee and Test Year

The Acquired Brain Injury-Related Sexuality Measure (ABI-RSM) was formally published in 2023 by researchers Ann-Sofie Ek, Charlotta Holmström, and Eva Elmerstig. The instrument was developed under academic research initiatives at Malmö University, Sweden.

• Permissions: The measure is distributed under open-access principles and academic fair-use terms. It may be utilized freely for empirical research, academic teaching, and clinical evaluation, provided that appropriate scholarly attribution is accorded to the original authors and the source publication in Sexuality and Disability.
• Fee: There is no fee required to access or administer the instrument.
• Licensing: Published in an open-access journal under the Creative Commons Attribution 4.0 International License (CC BY 4.0).

References

• Annon, J. S. (1976). The Behavioral Treatment of Sexual Problems: Brief Therapy. Harper & Row.
• Davis, S., & Taylor, B. (2006). From PLISSIT to Ex-PLISSIT. In S. Davis (Ed.), Rehabilitation: The Use of Theories and Models in Practice (pp. 101–124). Churchill Livingstone Elsevier. https://doi.org/10.1016/B978-0-443-10024-6.50011-8
• Ek, A.-S. (2010). Sexualitet efter förvärvad hjärnskada: Patienters upplevelser och behov av rehabilitering [Sexuality after acquired brain injury: Patients’ experiences and rehabilitation needs] (Master’s thesis). Malmö University, Malmö, Sweden.
• Ek, A.-S. (2011). Partnerns upplevelse av sexualitet och närhet efter förvärvad hjärnskada [The partner’s experience of sexuality and intimacy after acquired brain injury] (Research report). Malmö University, Malmö, Sweden.
• Ek, A.-S., Holmström, C., & Elmerstig, E. (2023). Unmet need for sexual rehabilitation after acquired brain injury (ABI): A cross-sectional study concerning sexual activity, sexual relationships, and sexual rehabilitation after ABI. Sexuality and Disability, 41(2), 387–410. https://doi.org/10.1007/s11195-023-09788-w
• Stolwyk, R. J., Fontaine, A., & Charlton, J. (2013). The impact of acquired brain injury on sexual functioning and intimate relationships: A qualitative study of survivor and partner perspectives. Neuropsychological Rehabilitation, 23(5), 700–721. https://doi.org/10.1080/09602011.2013.805662

Items of the Scale