A window into the reality of families living long term with challenging behaviours after a TBI.

Challenging behaviours are a long-term burden for people with traumatic brain injury (TBI) and their families. Families frequently shoulder the responsibility alone, but little is known about the strategies they use to manage these behaviours. This study aimed to 1) identify the coping strategies used by people with TBI living in the community and their family caregivers to manage challenging behaviours; and 2) describe the similarities and differences between strategies used by people with TBI and caregivers. In this qualitative descriptive design, individual semi-structured interviews were conducted with adults with TBI and their caregivers and were inductively analyzed. The sample included 10 dyads and two triads, totalling 12 caregivers (8 women) and 14 individuals with TBI (6 women; 21.71 ± 10.84 years post-injury). Participants' strategies were proactive (prevention), reactive (response), or retroactive (aftercare). Most strategies were described by caregivers. Some of them were effective and lasting, others not, reflecting how they adapted their approaches over time. Families put in place various strategies in their life's journey, such as giving feedback or adapting the environment. Despite these strategies supporting long-term community living, the need for ongoing support is underscored, as crises may still occur, impacting families' quality of life.

Further investigations into performance variance on the Multiple Errands Test.

INTRODUCTION: The Multiple Errands Test (MET) is a complex, performance-based assessment that is useful for characterising the impact of impairments of executive function on everyday activities. However, performance variance amongst those without neurological pathology, and the impact of non-cognitive factors on this, requires further investigation. METHODS: This was a cross-sectional analytic study, conducted with a convenience sample of 40 neurologically intact community-dwelling Australian adults. Participants completed a hospital or shopping centre version of the MET, where their Performance Efficiency, Task Completions and Rule Breaks were recorded. Non-cognitive factors of interest were demographic (age, sex and education), psychological (measured with the Hospital Anxiety and Depression Scale and self-ratings of test anxiety) and assessment-related (assessment site, self-reported site familiarity and observed strategy use). MET performance was analysed using descriptive statistics. A series of standard multiple and binary logistic regression analyses examined the relationships between MET performance and non-cognitive factors. RESULTS: Most participants (n = 35, 87.5%) completed at least 10 of the 12 prescribed tasks and broke an average of four rules (SD = 2.36). They achieved an average performance efficiency rating of 0.75/1 (SD = 0.15), suggesting variability in the extent to which participants made non-essential location stops and/or failed to complete tasks whilst at an essential location. The assessment site and participant site familiarity had a statistically significant (p < 0.05) impact on Performance Efficiency and Task Completion scores, and psychological factors had a statistically significant (p < 0.05) relationship with Rule Breaks. CONCLUSION: Findings suggest that the impact of factors other than cognition should be considered when interpreting MET performance. The assessment site and participant site familiarity may contribute to significant variability in Performance Efficiency scores. Clinicians should also be aware of the potential impact of these assessment-related factors on Task Completions and psychological distress on Rule Breaks.

A scoping review of resilience among transition-age youth with serious mental illness: tensions, knowledge gaps, and future directions.

INTRODUCTION: The study of resilience among transition-age youth (aged 16-29 years) living with serious mental illness (SMI) has provided a promising new direction for research with the capacity to explore individuals' strengths and resources. However, variability in how resilience is defined and measured has led to a lack of conceptual clarity. A comprehensive synthesis is needed to understand current trends and gaps in resilience research among this population. The purpose of the current study was to map how resilience has been conceptualized and operationalized among transition-age youth with SMI, explore resilience factors and outcomes that have been studied, and recommend areas for future research. METHODS: A six-stage scoping review methodology was used to systematically identify relevant empirical literature across multiple databases (MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, Scopus), addressing transition-age youth diagnosed with SMI and resilience. Topic consultation and reaction meetings were conducted to gather feedback from transition-age youth with SMI, researchers, and clinicians during the review process to enhance the applicability of the review findings. A meta-narrative approach was used to organize included studies into research traditions (i.e., paradigms of inquiry with similar storylines, theoretical and methodological orientations). Resilience factors and outcomes, and the consultative meetings, were analyzed using content analysis. RESULTS: Twenty-four studies met inclusion criteria (14 quantitative, 9 qualitative, 1 mixed-method). Four research traditions were identified, each contributing a unique storyline which conceptualized and operationalized resilience in slightly different ways: Stress Adaptation, Person-Environment Interactions, Recovery-Focused, and Critical and Cultural Perspectives. Resilience factors and outcomes were most commonly evaluated at the individual-level or within the immediate environment (e.g., personal characteristics, social support networks). Limited research has explored the influence of macro-level systems and health inequalities on resilience processes. Results from the consultative meetings further demonstrated the importance of health services and sociocultural factors in shaping processes of resilience among youth. CONCLUSION: The present results may be used to inform future work, as well as the development of age-appropriate, strengths-based, and resilience-oriented approaches to service delivery. Interdisciplinary and intersectional research that prioritizes community and youth engagement is needed to advance current understandings of resilience among transition-age youth with SMI.

The dual reality of challenging behaviours: Overlapping and distinct perspectives of individuals with TBI and their caregivers.

Challenging behaviours significantly impact the lives of people with traumatic brain injury (TBI) and their family caregivers. However, these behaviours are rarely defined from the perspectives of both individuals, a necessary step to developing interventions targeting meaningful goals for individuals and caregivers. This study aimed to (1) explore and confirm the perspective of individuals with TBI living in the community and their family caregivers on behaviours they consider challenging and, (2) identify overlapping or distinct views on challenging behaviours. A qualitative descriptive design was used. Twelve caregivers (8 females; 59.67 ± 11.64 years old) and 14 participants with mild-severe TBI (6 females; 43.21 ± 10.98 years old; time post-injury: 21.71 ± 10.84 years) were interviewed (10 dyads and two triads). Data were analysed using inductive qualitative analysis. Challenging behaviours most frequently reported by all participants were aggressive/impulsive behaviours, inappropriate social behaviours, and behavioural manifestations of cognitive impairments. Overlapping perspectives were identified regarding aggressive behaviours. Distinctions exist as inappropriate social behaviours and cognitive difficulties were mainly reported by caregivers. Our results confirm that perspectives may vary between dyad members. Interventions should include dyad inputs to formulate goals that are significant to the person with TBI and their caregiver.

Adolescent and parent experiences with Tele-Active Rehabilitation for concussion: an exploratory qualitative study.

PURPOSE: To explore the experiences of adolescents with concussion and their parents who participated in a novel remotely delivered Tele-Active Rehabilitation (Tele-AR) intervention involving sub-symptom threshold exercise, education, and support. Specifically, we aimed to elicit perspectives regarding the remote delivery approach, valued aspects of the program, and perceived benefits of the intervention. METHODS: This qualitative study took place within the context of a larger mixed-methods project exploring the feasibility of the Tele-AR intervention. A descriptive qualitative design was utilized. Semi-structured interviews were conducted with adolescents (n = 3; ages 14-17 years) with concussion and one of their parents (n = 3) within one week of completing the six-week Tele-AR intervention. Data were analyzed using thematic analysis. RESULTS: Four themes were identified that capture participant experiences in the intervention: (1) Enabling access to active rehabilitation; (2) Focusing on individual needs; (3) Learning to take responsibility for recovery; and (4) Convenience and comfort of engaging in rehabilitation from home. CONCLUSIONS: A small sample of 3 adolescents with concussion and their parents were satisfied with the Tele-AR intervention and appreciated the convenience and comfort of engaging in rehabilitation from home, which facilitated adolescents taking responsibility for their own recovery. Findings support continued study of Tele-AR, which may be an accessible intervention to facilitate recovery in adolescents with concussion.

Self-reported strategy generation and implementation in the multiple errands test: A qualitative description.

The Multiple Errands Test (MET) is a naturalistic assessment of executive function. Strategy use during the MET can provide useful information for the development of a cognitive profile and intervention plan in patients with brain injury. However, while observed external strategy use in the MET is well-documented, information about internal strategy use and reference data with healthy controls is limited. Contextual influences on strategy selection in this real-world assessment are also not well understood. This qualitative descriptive study explored the internal and external strategies used during MET performance by cognitively intact adults. Strategies were categorized as planning, checking, and problem solving. When planning, participants simplified and familiarized themselves with MET requirements before developing an action plan. They checked their performance by asking for help and using cues in the physical environment. When problems arose, these were solved through self-talk, comparing alternatives, applying context and modifying their plan. Results highlighted that individuals employ both visible and hidden strategies during the MET. This suggests that reflective discussions with patients following cognitive task engagement may be important, to uncover and understand strategy use, both to inform analysis of performance and guide strategy training.

Determining the Need for Client 24-Hour Supervision: A Cross-Sectional Survey of Occupational Therapists.

This study explored how private practice occupational therapists determined whether their clients' need 24-hour supervision, including assessments used, modes of clinical reasoning and therapists' confidence in their determinations. Survey data from 90 participants were analyzed using descriptive statistics. Participants reported using 166 different assessments to inform decisions about 24-hour supervision and most frequently engaged in pragmatic and conditional reasoning. On average, therapists perceived that they were confident or very confident in their determinations. There is variability in how therapists assess and reason through when 24-hour supervision may be required. Research to develop practice guidelines in this area is needed.

Sex and gender differences in technology needs and preferences among informal caregivers of persons with dementia.

BACKGROUND: Dementia is a major public health concern associated with significant caregiver demands and there are technologies available to assist with caregiving. However, there is a paucity of information on caregiver needs and preferences for these technologies, particularly from a sex and gender perspective. To address this gap in research, the objectives of this study are to examine (1) the knowledge of technology, (2) perceived usefulness of technology, (3) feature preferences when installing and using technology and (4) sex and gender influences on technology needs and preferences among family caregivers of persons with dementia (PWD) across North America. METHODS: A secondary analysis was conducted on an existing cross-sectional survey with family caregivers of PWDs. Respondents were recruited through the Alzheimer Society of Canada, the Victorian Order of Nurses and Adult Day Programs and other Canadian health care provision institutes. Descriptive statistics, bivariate and multivariate analyses were used to describe the study sample, uncover differences between male and female caregivers and examine sex and gender influences on caregivers' technology needs and preferences. RESULTS: A total of 381 eligible responses were received over a nine month data collection period. The majority of respondents did not know much about and never used any technologies to assist with caregiving. "Being easy to install", "easy to learn how to use" and "cost" were identified as the most important features when purchasing and setting up technology, while "reliability" was identified as the most important feature when using technology. Most respondents were willing to pay up to $500 to acquire individual technologies. Controlling for other socio-demographic variables, female respondents were more likely to have some or more knowledge about technology for caregiving while male respondents were more willing to pay higher amounts for these technologies compared to their female counterparts. CONCLUSIONS: As one of the first studies of its kind, our findings represent a step towards the incorporation of sex and gender considerations such as cost and reliability in technology design and promotion for caregivers. Future efforts are warranted to establish an in-depth understanding of sex and gender influences in relation to other social and environmental factors.

A scoping review to characterize bridging tasks in the literature on aging with disability.

BACKGROUND: Bridging involves improving knowledge sharing and collaboration across different fields, such as aging and disability. The objectives of this review were to describe: 1) the contexts where bridging has occurred in relation to delivery of health services for adults aging with neurological or developmental conditions; and 2) characterize and map bridging tasks, stakeholders involved, and outcomes discussed in peer-reviewed literature. METHODS: Seven databases were searched around the core concepts of "bridging," "aging," and "disability." In total, 10,819 articles were screened with 49 meeting the inclusion criteria of discussing aging with developmental or neurological disability, explicitly describing bridging tasks, published in English and a peer-reviewed publication. Bibliographic information, sample characteristics, and data on bridging was extracted and included in the qualitative synthesis. RESULTS: Intellectual and/or Developmental disabilities were the most studied population (76% of articles), and most articles were published in the United States (57%). Twenty-two bridging tasks were identified, and categorized into three domains: health and social service delivery (e.g., care coordination tasks), policy (e.g., policy change), and research and training (e.g., mentoring). Stakeholders involved ranged from health care professionals to policy makers and organizations in aging and disability services. CONCLUSIONS: The resulting matrix will assist in the specification of bridging in research and practice. Future work should evaluate specific models of bridging and their effects on health service delivery.

Assessing resiliency in paediatric rehabilitation: A critical review of assessment tools and applications.

BACKGROUNDS: Resiliency has attracted a growing interest in paediatric rehabilitation as a key capacity for disabled children and their families to thrive. This study aimed to identify measures used to assess resiliency of disabled children/youth and their families and critically appraise the current use of resiliency measures to inform future research and practice. METHODS: A two-stage search strategy was employed. First, systematic reviews of resiliency measures published since 2000 were searched. Second, full names of measures identified in at least two systematic reviews were searched across four electronic databases. Included studies assessed resiliency among children/youth (0-18 years old) with chronic health conditions and/or disabilities and their families. Identified articles were then analysed to discern the study's definition of resiliency, authors' rationales for measurement selection, and types of perceived adversities facing the study participants. RESULTS: From an initial yield of 25 measures identified in five systematic reviews, 11 were analysed in two or more reviews. The second stage yielded 41 empirical studies published between 2012 and 2018, which used 8 of the 11 resiliency measures searched by name. Of 41, 17 studies measured resiliency of disabled children/youth, 23 assessed resiliency within family members, and 1 studied both children/youth and their families. Our critical appraisal identified inconsistencies between the studies' definition of resiliency and chosen measures' operationalization, implicit assumption of disabilities as a developmental risk that automatically results in life adversities, and the tendency among family studies to reduce resiliency down to stress coping skills. Research that encompasses contextual factors and developmental influences is lacking. CONCLUSIONS: There is a need for a situated measurement approach that captures multiple interacting factors shaping resiliency over one's life course. Resiliency measures would benefit from a greater focus on a person-environment transaction and an alternative definition of resiliency that accounts for multiple capacities to navigate through disabling environments.

Interventions to address burden among family caregivers of persons aging with TBI: A scoping review.

PURPOSE: To capture the scope of literature exploring interventions for caregivers of aging persons with TBI. METHODS: A scoping review of peer reviewed literature was conducted in two phases. Phase I: Searching seven databases, two independent raters screened articles using a set of predetermined criteria. Included articles were reviewed, and categorized according to common themes. Phase II: Five stakeholders were engaged in a consultation. A content analysis was performed by extracting statements from each interview using an inductive strategy, and organizing each into themes. FINDINGS: A total of 11 articles were included in the final analysis. Inter-rater reliability was assessed at both the title and abstract search [98.8% agreement; k = 0.3425 (95% CI, .246 to .439), p < .05]; and the full-text review [83% agreement; k = 0.542 (95% CI, 0.340 to 0.745), p < .05] phases. Seven articles identified potential interventions, and four identified and evaluated an intervention. Interventions targeted subjective burden (n = 4) and objective burden (n = 4), with caregiver knowledge and skill development (n = 3) classified as a sub-category of objective burden. Stakeholders overwhelmingly emphasized the need for interventions to reduce objective burden. IMPLICATIONS: Included articles were primarily composed of levels six and seven evidence, suggesting that this literature is in an early stage of development. Future research should emphasize the development and evaluation of interventions to reduce objective burden.

Generating Expectations: What Pediatric Rehabilitation Can Learn From Mental Health Literature.

Family-Centered Care (FCC) represents the ideal service delivery approach in pediatric rehabilitation. Nonetheless, implementing FCC as intended in clinical settings continues to be hindered by knowledge gaps. One overlooked gap is our understanding of clients' therapy expectations. This perspective article synthesizes knowledge from the mental health services literature on strategies recommended to service providers for generating transparent and congruent therapy expectations with clients, and applies this knowledge to the pediatric rehabilitation literature, where this topic has been researched significantly less, for the purpose of improving FCC implementation. Dimensions of the Measure of Processes of Care, an assessment tool that measures clients' perceptions of the extent a service is family-centered, inform the organization of therapy expectation-generating strategies: (1) Providing Respectful and Supportive Care (assessing and validating clients' expectations); (2) General and Specific Information (foreshadowing therapy journeys, explaining treatment rationale, and conveying service provider qualifications); (3) Coordinated and Comprehensive Care (socializing clients to roles and reflecting on past socialization); and (4) Enabling and Partnership (applying a negotiation framework and fostering spaces safe to critique). Strategies can help pediatric rehabilitation service providers work with families to reframe unrealistic expectations, establish congruent beliefs supporting effective partnerships, and prevent possible disillusionment with therapy over time.

Research Priorities for Optimizing Long-term Community Integration after Brain Injury.

OBJECTIVE: This paper reports on a funded summit, which convened a multidisciplinary group of experts to provide consensus on the research priorities necessary for improving long-term community integration of individuals with traumatic brain injury (TBI) and their caregivers. METHODS: The 2-day summit was directed using the World Café Methodology, to engage stakeholders and collaboratively arrive at a consensus on the problems to be targeted in research. Participants (n=54), drawn from two Canadian provinces, included an interdisciplinary group of researchers, clinicians, representatives from brain injury associations, individuals with TBI, and caregivers. In small groups, participants discussed challenges to long-term community integration and potential initiatives that would address these barriers. Field notes from the discussions were analyzed using qualitative content analysis. RESULTS: The consensus on prioritized research directions included developing interventions to optimize the functioning and participation of individuals with TBI, reducing caregiver burden, and evaluating how emerging technology can facilitate delivery of care. CONCLUSIONS: The World Café Methodology was an effective method for developing research priorities. The breadth of expertise of participants and the collegial environment allowed for the identification of a broad perspective on important future research directions with potential to enhance the long-term community integration of individuals with brain injury.

Clinicians' perceptions of the clinical utility of the Multiple Errands Test for adults with neurological conditions.

This study examined the clinical utility of the Multiple Errands Test (MET) from the perspective of clinicians. Employing a qualitative descriptive design, in-depth semi-structured interviews were conducted with eight occupational therapists. Participants had an average of 12 years clinical experience and their experience using the MET varied. Interviews were transcribed and analysed using framework analysis. Three dominant themes emerged from the data. Theme 1 was that clinicians value the MET because it reflects real-life functioning. Clinicians perceived the MET to be a unique assessment collecting data on functional performance, and sensitive to higher level cognitive deficits. Theme 2 was that the MET could be used flexibly depending on one's rehabilitation goals. Clinicians employed the MET as an assessment to inform the direction of treatment and as a component of their intervention. Theme 3 was that the MET is a challenging assessment requiring buy in and commitment from therapists. This study is the first to report clinicians' perspectives of the clinical utility of the MET. It reinforces the importance of ecologically valid tests, and augments existing research evaluating psychometric properties of the MET by describing how the MET has been employed in rehabilitation settings to improve health outcomes for adults with neurological conditions.

Reliability and construct validity of a revised Baycrest Multiple Errands Test.

Surprisingly few ecologically-valid assessments of executive function exist, but the Baycrest Multiple Errands Test (BMET) shows promise in identifying executive impairment. The goal of the present study was to develop both a revised version of the assessment (BMET-R), to improve the test's ability to discriminate between patients and healthy participants, and an alternate form of the BMET-R to permit repeat testing. Sixteen individuals with acquired brain injury (ABI) due to stroke or trauma and 16 healthy participants completed a series of neuropsychological assessments, questionnaires, the BMET-R and its alternate form (in counterbalanced order). The results of the study indicated that participants with ABI omitted more tasks, broke more rules, and were less efficient than healthy participants on both the revised BMET-R and its alternate form. Moreover, significant correlations were found between the two versions of the BMET-R for task completions, omissions, errors, rule breaks and inefficiencies but few significant correlations were observed between the BMET-R versions and measures of executive dysfunction in everyday life. These results indicate that the two versions of the BMET-R are able to dissociate the performance of participants with ABI from that of healthy participants. However, despite overlaps in performance and correlations between the two versions of the BMET-R, they did not identically assess executive deficits. This suggests that caution should be used when constructing and validating alternate versions of performance-based assessments.

Sentinel Events During the Transition From Hospital to Home: A Longitudinal Study of Women With Traumatic Brain Injury.

OBJECTIVE: To describe the occurrence of sentinel events and their influence on community integration of women with traumatic brain injury (TBI) transitioning from hospital to home. DESIGN: A longitudinal study was completed with data collected before and at 1, 3, and 6 months after hospital discharge. SETTING: Brain injury rehabilitation unit and acute neuroscience ward. PARTICIPANTS: Women (N=25) with severe TBI (aged between 17 and 50 years; duration of posttraumatic amnesia ranged from 1 to 123d). Sixteen family caregivers also participated. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Community integration was measured using the Mayo-Portland Adaptability Inventory. Depression, anxiety, and stress were measured using the Depression Anxiety Stress Scale. The Sentinel Events Questionnaire was used to record life events that potentially influence the transition process. RESULTS: Most women (>16 at each time point) experienced mild to moderate impairments in psychosocial integration. A third of the sample reported symptoms of depression (n=8), anxiety (n=9), and stress (n=7) that exceeded clinical cutoff levels on at least 1 occasion. At 6 months, 3 women reported clinically significant depression and anxiety (12%) and 2 reported significant stress levels (8%). Positive sentinel events such as return to meaningful occupation were common (n=14). Negative sentinel events were also quite common. For example, reduced access to therapy, reported by 10 women, was associated with poorer participation levels. CONCLUSIONS: These findings suggest that the presence of sentinel events influences the transition experiences of women with TBI in this sample. Rehabilitation should consider the occurrence and impact of sentinel events because this may facilitate successful transitions.

Loss of Financial Management Independence After Brain Injury: Survivors' Experiences.

OBJECTIVE: This pilot study explored the experiences of brain injury survivors after a change in financial management (FM) independence. METHOD: Using a qualitative descriptive design, 6 participants with acquired brain injury were recruited from a community brain injury organization and participated in semistructured interviews. Data were analyzed using thematic analysis. RESULTS: Three themes emerged from the interviews: (1) trajectory of FM change, involving family members as key change agents; (2) current FM situation, involving FM strategies such as automatic deposits and restricted budgets; and (3) the struggle for control, in which survivors desired control while also accepting supports for FM. CONCLUSION: This study identifies some of the challenges brain injury survivors face in managing their finances and the adjustment associated with a loss of FM independence. Occupational therapists should be aware of clients' experiences when supporting them through a change in independence.

The effect of environmental barriers on community integration for individuals with moderate to severe traumatic brain injury.

OBJECTIVE: To describe environmental barriers endorsed by individuals with traumatic brain injury during the first 6 months after discharge and determine their effect on community integration. DESIGN: Prospective longitudinal study with data collected at predischarge and at 1, 3, and 6 months postdischarge. PARTICIPANTS: One hundred thirty-five individuals with a diagnosis of traumatic brain injury discharged from a large metropolitan hospital to a home/community environment. MEASURES: Sydney Psychosocial Reintegration Scale; Craig Hospital Inventory of Environmental Factors; and Mayo-Portland Adaptability Inventory-4. RESULTS: Multiple regression analyses indicated that environmental barriers arising during the transition from hospital to home had a negative association with community integration outcomes. Physical barriers were most commonly endorsed, but attitudinal barriers were significantly correlated with relationship changes. CONCLUSION: Environmental barriers should be addressed in rehabilitation and considered in policy development for people with traumatic brain injury. Future research on the measurement of environmental barriers is recommended.

Implementation of an advanced occupational therapy assistant-led groups programme in aged care rehabilitation.

BACKGROUND/AIM: The use of support workers such as occupational therapy assistants is emerging as a strategy to enhance the health workforce, but there has been little evaluation of the feasibility of expanding support worker roles and responsibilities. This study aimed to implement an advanced occupational therapy assistant-led groups programme in a subacute aged care rehabilitation setting and to evaluate the impact on the clinical outcomes of group participants. METHOD: A prospective quasi-experimental cohort study was conducted comparing outcomes of 30 patients receiving a groups programme led by an advanced occupational therapy assistant with a historical control group of 40 patients receiving the groups programme led by an occupational therapist. The groups programme comprised up to six groups per week and included meal preparation groups and domestic training groups. Outcomes were Functional Independence Measure scores, Australian Therapy Outcome Measures, discharge destination, length of stay and patient satisfaction. RESULTS: Discharge outcomes of patients participating in the assistant-led groups programme were not significantly different to patients who participated in the therapist-led groups programme. Patient satisfaction levels were not significantly different between groups. CONCLUSION: The introduction of an advanced occupational therapy assistant to replace an occupational therapist in facilitating a groups programme in aged care rehabilitation did not result in a decline in patient outcomes. However, the results should be interpreted tentatively given the study limitations and the advanced skills of the assistant involved. Further more rigorous longer term research with a larger sample is required.

The Effects of Systemic Lupus-Related Cognitive Impairments on Activities of Daily Living and Life Role Participation: A Qualitative Framework Study.

OBJECTIVE: Cognitive impairment (CI) in systemic lupus erythematosus (SLE) negatively impacts health-related quality of life leading to activity limitations. This qualitative study aimed to (1) explore the effect of SLE-related CI on activities of daily living and life role participation and (2) describe factors influencing activity restriction and life role participation. METHODS: Semistructured, in-depth interviews of lived experience of CI in SLE were conducted with 24 participants with SLE. Sociodemographic and clinical data, and objective and subjective cognitive function, were collected to characterize participants. A qualitative thematic content analysis was undertaken guided by a framework analytical approach. RESULTS: Participants reported problems in multiple cognitive domains, with multiple perceived causes. CI was felt to impact work, social, domestic, and family life, health, and independence. Five overarching themes were represented in the data: (1) characterization of SLE-reported CI, (2) perceived cause of CI, (3) perceived impact of CI on activities of daily living and life role participation, (4) adaptations for managing CI, and (5) influence of CI adaptations on activities of daily living and life role participation. CONCLUSION: This study provides a better understanding of the patient experience of CI in SLE, how it impacts their lives, and what coping strategies they employ. It highlights the long-term challenges those with CI in SLE undergo and provides evidence for the urgent need to implement multidisciplinary treatment options. When managing CI, it may be beneficial to evaluate and understand available psychosocial support resources to help identify and reinforce relevant adaptations to improve health-related quality of life.