Semi-structured Cognitive Interviews Research Articles

Parent Perspectives on Communication Quality in the Neonatal Intensive Care Unit.

Though prior literature has demonstrated that communication in the Neonatal Intensive Care Unit (NICU) needs to be improved, in-depth descriptions of parents' views of NICU communication are lacking. We sought (1) to explore parent perceptions of communication in the NICU and (2) to understand parents' communication needs and preferences. We conducted in-depth semi-structured cognitive interviews utilizing concurrent probes with parents of 10 patients in our urban level IV Neonatal Intensive Care Unit over a period of 4 months (July 2021-October 2021). Interview questions were derived from the Quality of Communication scale. We conducted thematic analysis of interview transcripts modeled after work by Braun and Clarke. Four overarching themes were identified: Strengths, Challenges, People, and Coping Strategies. Parents reported a range of communication quality in the NICU. Results revealed that the first 48hours of NICU hospitalization represent a period of vulnerability and uncertainty for parents. Parents value clear yet hopeful communication about a baby's clinical status and expected course. We hope that the concrete findings from this study can both inform practice in the NICU now and influence practice guidelines to include such components as emphasis on the first 48hours, desire for proactive information sharing, and the importance of including hope.

Development of a Vitamin B12 Deficiency Patient-Reported Outcome Measure for Clinical Practice and Research.

It is difficult to recognize vitamin B12 deficiency and to evaluate the effect of B12 treatment due to a broad range of variable clinical symptoms overlapping with other diseases and diagnostic biomarkers that quickly normalize during treatment. This poses a risk of delay in diagnosis and a challenge to uniformly monitor the effect of B12 treatment. There is a need for a new clinical outcome measure suitable for clinical practice and clinical evaluation studies. To develop a Patient-Reported Outcome Measure (PROM) which measures the severity of vitamin B12 deficiency symptoms. The B12 PROM was developed by (1) gathering input from experts and literature review to define a construct and develop a conceptual model, (2) processing input from health care providers, scientists, and patients to develop items and response options, and (3) improving items based on the feedback from laypersons, test interviews, semi-structured cognitive interviews with patients, and forward and backward translation (ENG-NL). The B12 PROM includes 62 items grouped into 8 categories of symptoms related to vitamin B12 deficiency (General, Senses, Thinking, In limbs and/or face, Movement, Emotions, Mouth & Abdomen, Urinary tract & Reproductive organs). Cognitive interviews demonstrated good comprehensibility and comprehensiveness. This study is the first step in the development of a disease-specific PROM for vitamin B12 deficiency to measure the burden of symptoms. Further validation and reliability testing are necessary before the PROM can be applied in clinical practice and research.

FC29: Development of an Informant-Reported Lucidity Measure

Objective:The aim was to develop a lucidity measure for use with front-line caregivers to describe lucidity episodes among individuals with dementia, neurological and other illnesses and identify associated individual and episodic event characteristics.Methods:Qualitative: An external advisory board reviewed the clarity, breadth, and scope of the conceptual definition and item content. Modified focus groups were conducted with 20 staff and 10 family members who participated using a web-based survey. Data were extracted from Qualtrics for analysis using NVivo. Semi-structured cognitive interviews were conducted with10 health professionals working with older adults with cognitive impairment.Quantitative: A combined exploratory and confirmatory factor analysis was performed to test for dimensionality. The explained common variance (ECV), calculated as the percent of observed variance was estimated. Estimates of internal consistency such as ordinal alpha and McDonald’s omega were computed in R and Mplus.Results:Data were collected from 50 staff informants on behalf of 302 residents, 25 with lucidity events. The majority (74%) of those interviewed were certified nursing assistants. Most (58%) of the sample of residents were White and 21% Black or African American. One fourth (25%) were Hispanic or Latino. Most (80% to 90%) of those with lucidity events were reported to have memory deficits and at least 70% required maximal assistance in performing basic tasks such as dressing. Most events (60%) were of short duration (10 minutes or less), and included showing facial expressions (83%) and making eye contact (88%). One half spoke multiple sentences. About half were reported to hold a conversation, and speak coherently to convey needs; 40% were able to remember and mention the name of relatives. Staff reactions were of surprise (60%) shock (52%) and happiness (50%).Data for item modification derived from the focus groups and cognitive interviews resulted in the final lucidity measure. Internal consistency estimates were high, with most ranging from 0.76 to 0.98. The ECVs were high for most scales, indicative of essential unidimensionality.Discussion:The dimensionality and reliability analyses results were strong, and supportive of unidimensional scales with high internal consistency. The feasibility of conducting assessments of lucidity events was established.

Development and implementation barriers of a new patient-reported measure: The Radiation therapy-related Inconvenience Questionnaire (RIQ).

Radiation therapy (RT) can benefit approximately 50% of cancer patients and contribute to 40% of all cancer cures, yet its utilisation in cancer is low globally. Several factors contribute to this including perceived inconvenience related to accessing and utilising RT. To quantitatively assess the latter, a new tool - the Radiation therapy-related Inconvenience Questionnaire (RIQ) - was developed. This study aimed to pre-test the RIQ and explore barriers and facilitators to implementing it in routine clinical practice and clinical trials. Semi-structured cognitive interviews were conducted with patients undertaking RT, recruited via three hospitals to examine content validity, acceptability, and comprehensibility of the RIQ. Interviews identified inconsistencies, relevance, and clarity of items. Semi-structured interviews with healthcare professionals involved in the delivery of care to individuals undertaking RT explored barriers and facilitators to routine usage. Thematic analysis was used to identify themes. Patients (N = 15) identified problems in content, instructions, layout, length, and response options; consequently, 25 items were revised and eight removed, resulting in a final 29-item questionnaire. Clinicians identified staff- and patient-specific barriers to implementing RIQ in clinical practice. Perceived facilitators included the following: (a) workplace factors, (b) mode of administration, and (c) imparting knowledge. This study demonstrated acceptability and comprehensibility of the 29-item RIQ amongst cancer patients undertaking RT and treating clinicians. The next phase will evaluate the RIQ's measurement properties in a larger clinical study. The barriers and facilitators identified can guide future implementation of RIQ in clinical practice and clinical trials.

Diversified caregiver input to upgrade the Young Children’s Participation and Environment Measure for equitable pediatric re/habilitation practice

BackgroundPractitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children’s Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers’ responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design.MethodsCaregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0–3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55–90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds.ResultsEight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (Mdn = $15,001–20,000) were enrolled, with children (M = 21.2 months, SD = 7.73) enrolled in EI. Caregivers proposed three ways to improve comprehension (clarify item wording, remove or simplify terms, add item examples). Environmental item edits prompted caregivers to share how they relate and respond to experiences with interpersonal and institutional discrimination impacting participation. Caregivers characterized three core functions of a virtual agent to strengthen YC-PEM navigation (read question aloud, visual and verbal prompts, more examples and/or definitions).ConclusionsResults indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice.

Cross-cultural adaptation of the Genetic Counseling Outcome Scale (GCOS-24) for use in Canada: A qualitative study.

The Genetic Counselling Outcome Scale (GCOS)-24 is a patient-reported outcome measure (PROM) developed and validated in the United Kingdom (UK). The aim of this study was to cross-culturally adapt GCOS-24 to Canadian Clinical Genetic Services (CGS). This was achieved through a qualitative study exploring whether the existing GCOS-24 maintains its intended meaning in a Canadian population and assessing whether GCOS-24 items could be better worded to meet the needs of members of families affected by genetic conditions in Canada. Thirteen participants were recruited from Canadian Patient Organizations supporting people and families affected by genetic conditions. Data were collected through semi-structured cognitive interviews, as these allow exploration of participants' comprehension, opinions, thoughts, and feelings regarding GCOS-24's instructions, response options, and the meaning/relevance of each item. Thematic analysis was utilized for data analysis, and an inductive approach to coding was followed to allow for themes to emerge from the data. Themes were organized in respect to their questionnaire item and further classified into their respective Empowerment dimension. The GCOS-24 instructions were found easy to understand by all thirteen participants. Although the response options were also found to be straightforward, the data suggest the questionnaire would benefit from the addition of a "non-applicable" option. Semantic validation of the GCOS-24 showed that items within the Cognitive Control and Emotional Regulation dimensions were found easy to understand by participants. However, items within the Decisional Control, Behavioural Control and Hope dimensions presented semantic difficulties. Participants provided feedback on syntactic changes to support understanding, and this feedback was used to develop a final Canadian-adapted version of GCOS-24, GCOS-Canada. This study provides the first step towards a valid, culturally adapted PROM for use in Canadian CGS service evaluation and research. GCOS-Canada would benefit from psychometric validation to ensure validity, reliability, responsiveness, minimal clinically important difference and internal consistency.

OC-081 DIASTASIS RECTI REPAIR – DEVELOPMENT OF A PATIENT REPORTED OUTCOME MEASURE THROUGH QUALITATIVE ASSESSMENT

Abstract Aim Diastasis recti may lead to undesirable symptoms including aesthetic dissatisfaction and decreased quality of life (QoL). Currently, there is no validated disease-specific patient reported outcomes (PRO) measure to assess patient satisfaction and facilitate personalized care after repair. Our study aimed to develop a diastasis-specific PRO-measure through qualitative assessment within this population. Methods Diastasis recti repair patients were enrolled and semi-structured cognitive interviews using the think-aloud technique were conducted by a trained qualitative research member of the Mixed Methods Research Laboratory. Patients answered a 23-item questionnaire, derived from BODY-Q and AHQ, addressing four components–Physical, Appearance, Surgical Team, and Satisfaction with Abdomen. Results Thirteen patients who underwent diastasis repair completed the interviews, which were conducted an average of 353 days after surgery. All participants reported the questions in the survey were easy to interpret and assessed different constructs. Most questions in the study were relevant and easily interpreted, however, a few participants reported some items were unclear, specifically related to discerning between size and shape of their abdomen. When asked about aspects of their experience not addressed by the survey, patients mentioned sensory changes around the incision, and accordingly a question was added to the instrument. Conclusion As a first step toward creation of a diastasis recti PRO-measure, we present the results of qualitative patient assessment. Patients found the instrument clear and relevant to their experience. A void remains to optimize PROs after diastasis repair; therefore, our PRO-measure will provide surgeons a qualitative tool for quantitative assessment of their QoL.

Unexpected lucidity in dementia: application of qualitative methods to develop an informant-reported lucidity measure

Objectives Unexpected lucidity is a phenomenon of scientific, clinical, and psychological relevance to health professionals, to those who experience it, and their relatives. This paper describes qualitative methods used to develop an informant-based measure of lucidity episodes. Methods The approach was refinement of the operationalization of the construct; review of seminal items, modification, and purification; and confirmation of the feasibility of reporting methodology. Modified focus groups were conducted with 20 staff and 10 family members using a web-based survey. Themes included reaction when hearing the term; words that come to mind; description of and first reaction to referenced or observed ‘lucidity’ events. Semi-structured cognitive interviews were conducted with 10 health professionals working with older adults with cognitive impairment. Data were extracted from Qualtrics or Microsoft 365 Word® for analysis using NVivo. Results Conceptual issues, as well as issues regarding comprehension, interpretation, clarity, semantics, and standardization of definitions derived from an external advisory board, focus groups and cognitive interviews informed items’ modification, and resulted in the final lucidity measure. Conclusions An obstacle to understanding the mechanisms and estimating the prevalence of lucid events among individuals with dementia and other neurological conditions is the scarcity of reliable and valid measures. The substantive and varied data gathered from multiple methods including the collaborative work of an External Advisory Board, modified focus groups with staff and family caregivers, and structured cognitive interviews with health professionals were central in creating the revised version of the lucidity measure.

Refining Expert Recommendations for Implementing Change (ERIC) strategy surveys using cognitive interviews with frontline providers

BackgroundThe Expert Recommendations for Implementing Change (ERIC) compilation includes 73 defined implementation strategies clustered into nine content areas. This taxonomy has been used to track implementation strategies over time using surveys. This study aimed to improve the ERIC survey using cognitive interviews with non-implementation scientist clinicians.MethodsStarting in 2015, we developed and fielded annual ERIC surveys to evaluate liver care in the Veterans Health Administration (VA). We invited providers who had completed at least three surveys to participate in cognitive interviews (October 2020 to October 2021). Before the interviews, participants reviewed the complete 73-item ERIC survey and marked which strategies were unclear due to wording, conceptual confusion, or overlap with other strategies. They then engaged in semi-structured cognitive interviews to describe the experience of completing the survey and elaborate on which strategies required further clarification.ResultsTwelve VA providers completed surveys followed by cognitive interviews. The “Engage Consumer” and “Support Clinicians” clusters were rated most highly in terms of conceptual and wording clarity. In contrast, the “Financial” cluster had the most wording and conceptual confusion. The “Adapt and Tailor to Context” cluster strategies were considered to have the most redundancy. Providers outlined ways in which the strategies could be clearer in terms of wording (32%), conceptual clarity (51%), and clarifying the distinction between strategies (51%).ConclusionsCognitive interviews with ERIC survey participants allowed us to identify and address issues with strategy wording, combine conceptually indistinct strategies, and disaggregate multi-barreled strategies. Improvements made to the ERIC survey based on these findings will ultimately assist VA and other institutions in designing, evaluating, and replicating quality improvement efforts.

Checking IN: Development, Acceptability, and Feasibility of a Pediatric Electronic Distress Screener.

Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed. An electronic distress screening tool, Checking IN, for ages 8-21 was developed in 3 phases. Phase I used semi-structured cognitive interviews (N = 47) to test the wording of items assessing emotional, physical, social, practical, and spiritual concerns of pediatric patients. Findings informed the development of the final measure and an electronic platform (Phase II). Phase III used semi-structured interviews (N = 134) to assess child, caregiver and researcher perception of the feasibility, acceptability, and barriers of administering Checking IN in the outpatient setting at 4 sites. Most patients and caregivers rated Checking IN as "easy" or "very easy" to complete, "feasible" or "somewhat feasible," and the time to complete the measure as acceptable. Most providers (n = 68) reported Checking IN elicited clinically useful and novel information. Fifty-four percent changed care for their patient based on the results. Checking IN is a versatile and brief distress screener that is acceptable to youth with chronic illness and feasible to administer. The summary report provides immediate clinically meaningful data. Electronic tools like Checking IN can capture a child's current psychosocial wellbeing in a standardized, consistent, and useful way, while allowing for the automation of triaging referrals and psychosocial documentation during outpatient visits.

The Recurrent Urinary Tract Infection Symptom Scale: Development and validation of a patient-reported outcome measure.

This study aimed to develop and validate a tailored patient-reported outcome measure (PROM) evaluating the patient experience of recurrent urinary tract infection (rUTI) symptom severity. This measure was designed to supplement clinical testing methods, allowing full assessment of the patient experience of rUTI symptom burden, while enhancing patient-centred UTI management and monitoring. The Recurrent Urinary Tract Infection Symptom Scale (RUTISS) was developed and validated using a three-stage methodology, in accordance with gold-standard recommendations. Firstly, a two-round Delphi study was conducted to gain insights from 15 international expert clinicians working in rUTI, developing an initial pool of novel questionnaire items, assessing content validity and making item refinements.Next, two phases of one-to-one semi-structured cognitive interviews were conducted with a diverse sample of 28 people experiencing rUTI to assess questionnaire comprehensiveness and comprehensibility, making refinements after each phase. Finally, a comprehensive pilot of the RUTISS was conducted with 240 people experiencing rUTI across 24 countries, providing data for psychometric testing and item reduction. Exploratory factor analysis indicated a four-factor structure comprising: 'urinary pain and discomfort', 'urinary urgency', 'bodily sensations' and 'urinary presentation', together accounting for 75.4% of the total variance in data. Qualitative feedback from expert clinicians and patients indicated strong content validity for items, which was supported by high content validity indices in the Delphi study (I-CVI > 0.75). Internal consistency and test-retest reliability of the RUTISS subscales were excellent (Cronbach's α = 0.87-0.94 and ICC = 0.73-0.82, respectively), and construct validity was strong (Spearman's ρ = 0.60-0.82). The RUTISS is a 28-item questionnaire with excellent reliability and validity, which dynamically assesses patient-reported rUTI symptoms and pain. This new PROM offers a unique opportunity to critically inform and strategically enhance the quality of rUTI management, patient-clinician interactions, and shared-decision making by monitoring key patient-reported outcomes.

Cognitive interviewing as a method to inform questionnaire design and validity - Immersive Technology Evaluation Measure (ITEM) for healthcare education

Research of immersive technology in education is rapidly expanding with potential to educate future students in healthcare disciplines. Despite increasing literature there is a lack of validated instruments to investigate the effects of these technologies. Cognitive interviewing is a valuable evaluation method to check comprehension of a measure and was applied to a new measure of user experience of immersive technology for healthcare education (ITEM). A 5 domain self-reported measure of: immersion, intrinsic motivation, cognitive load, system usability, and debrief. Prior to the interview 9 participants were allocated to augmented reality and virtual reality educational activities. Verbal probing and think aloud techniques through semi-structured cognitive interviews were conducted. The ITEM was found to have high content validity index scores and relationships between domains were further explored through qualitative analysis. The results indicate high clarity of understanding for those completing the ITEM and supports future research as part of an ongoing validation process.

APPLICATION OF QUALITATIVE METHODS IN THE DEVELOPMENT OF AN INFORMANT-REPORTED MEASURE OF LUCIDITY

Abstract The aim was a qualitative evaluation of a lucidity measure for front-line staff or family informants. A sequential approach to item development and evaluation was followed: refinement of the operationalization of the construct; review of seminal items, modification, and purification; confirmation of the feasibility of reporting methodology. Modified focus groups were conducted with 20 staff and 10 family members who participated using a web-based survey. Sample themes included: reaction when hearing the term; words that come to mind; description of and first reaction to referenced or observed “lucidity” events. Data were extracted from Qualtrics for analysis using NVivo. Semi-structured cognitive interviews were conducted with10 health professionals working with older adults with cognitive impairment. An external advisory board reviewed the clarity, breadth, and scope of the conceptual definition and item content. Suggestions for item modification derived from the focus groups and cognitive interviews resulted in the final lucidity measure.

Development of a screening tool to identify patients with axial spondyloarthritis: a cognitive interview study.

To further refine the wording of screening questions and examine their face validity through cognitive interviews with axial spondyloarthritis (axSpA) and chronic mechanical back pain patients. In-depth, semi-structured cognitive interviews were conducted with 30 patients (10 axSpA; 20 chronic mechanical back pain patients) to assess the face validity and comprehensibility of the screening questions. The interview protocol focused on 12 questions/domains including participants' feedback/thoughts on the duration of suffering from back pain, age at onset of back pain, pace of back pain development, improvement of pain with movement or rest, nocturnal back pain improving upon awakening, pain in other parts of the body, responsiveness of pain to nonsteroidal anti-inflammatory drug (NSAID) use, history of autoimmune conditions, and domains such as sleep, sitting, and stiffness. The Flesch-Kincaid grade level and Flesch reading ease scores were then analyzed for the revised versions of screening questions. Participants preferred questions that allowed them to provide more details regarding the frequency of their symptoms. Questions were refined for clarity and eliminated if participants considered them to be irrelevant (e.g., NSAIDs). Two sample screeners were derived from twelve questions each with an overall reading grade of 7.5 and reading ease of 65.7%. It is feasible to design a screening tool that is accessible to most (e.g., reading level) and clear to individuals with back pain. An evidence-based approach to demonstrate the validity of the screening tool will be critical for it to be implemented widely into clinical practice. Key Points • Our study developed two sample screeners that are clear to individuals with back pain and accessible to most with an overall Flesch-Kincaid reading grade of 7.5 and Flesch reading ease of 65.7%. • Questions that were considered irrelevant to participants were eliminated such as responsiveness of pain to nonsteroidal anti-inflammatory drug (NSAID). • It is feasible to design a screening tool that is accessible to most (e.g., reading level) and clear to individuals with back pain.

Care Aides’ Perceptions of Caring for Nursing Home Residents With Past Psychological Trauma

The dynamic interplay between dementia and psychological trauma can exert powerful effects on nursing home residents’ behavioral symptoms and quality of life. Our objectives in this exploratory study were to assess care aides’ perceptions of how often they worked with residents with past psychological trauma, the types of trauma encountered, and reasons for these beliefs. We conducted semi-structured cognitive interviews (n = 10) with care aides in June 2019 to inform the development of a trauma needs assessment (4 questions) that we included in a large survey of nursing staff (2019 - 2020). Care aides (n = 3761) were sampled from 91 randomly selected urban nursing homes stratified by health region, owner operator model, and size. We completed basic statistics and content analyses. Care aides identified residents they believed to have psychological trauma histories and provided reasons for their beliefs. Approximately 12% of the reported traumatic events were disclosed to staff. The most common, broad categories of trauma to emerge during analysis were abuse (40%) and war exposure (30%). Each had sub-categories. The most common categories of signs of trauma were re-experiencing symptoms such as flashbacks and nightmares (28%), and avoidance of specific triggers, such as water or intimate care (24%). The majority of the reported signs of trauma were persistent and distressing for staff and residents. Some behaviours assumed to be responsive behaviours of dementia may relate to traumatic stress symptomatology. Implementing trauma-informed supports for residents and care aides is essential to person-centred care and optimal quality of life.

A guiding process to culturally adapt assessments for participation-focused pediatric practice: the case of the Participation and Environment Measures (PEM)

Purpose There is unprecedented opportunity to evaluate children’s participation in diverse cultural contexts, to enhance cross-cultural research, advance the delivery of culturally responsive pediatric rehabilitation, and translate new knowledge on a global scale. The participation concept is complex and heavily influenced by a child’s context. Therefore, effectively capturing the participation concept requires valid, reliable, and culturally sensitive participation-focused measures. This perspective paper proposes a structured process for culturally adapting measures of participation for children and youth with disabilities. Methods Elements of the Applied Cultural Equivalence Framework and Beaton and colleagues’ six-step process were used to create a guiding process for culturally adapting a Participation and Environment Measure (PEM) while drawing on two distinct cultural contexts. This process included forward and back language translations, and semi-structured cognitive interviews, to develop adapted versions of the PEM that are ready for psychometric validation. Results Common challenges to culturally adapting PEM content and administration are identified and methodological strategies to mitigate these challenges are proposed. Conclusions The proposed process can guide rehabilitation specialists and researchers in adapting participation measures that are suitable for their culture. Such a process can facilitate scalable implementation of evidence-based tools to support participation-based practice in the rehabilitation field. Implications for Rehabilitation The use of a systematic process can harmonize efforts by rehabilitation researchers and service providers to effectively culturally adapt pediatric participation measures to optimize its impact for culturally sensitive research and practice targeting participation. Two distinct, yet complementary, illustrative exemplars showcase the range of considerations and strategies, such as by conducting consecutive rounds of cognitive interviews, when teams use this systematic process to cultural adapt a pediatric participation measure. The systematic process outlined in this paper promotes rigor in achieving all elements of cultural equivalency, when feasible, to best ensure that the participation measure is suitable for use in the target cultural context.

'The War Made Me a Better Person': Syrian Refugees' Meaning-Making Trajectories in the Aftermath of Collective Trauma.

The centrality of the collective to Syrian identity and the ability of war to disrupt community ties have led to significant violations of Syrians’ pre-war assumptions about themselves, the world, and their place in the world. Guided by the integrated meaning-making model, this qualitative cross-sectional study assessed Syrian refugees’ meaning trajectories through their reappraisals of the war, attempts to repair community-informed shattered meanings, and those processes’ outputs (i.e., meanings-made) and outcomes (i.e., perceived psychological adjustment). We conducted semi-structured cognitive interviews with 39 Syrian war-exposed adults living in urban communities across Portugal, most of whom were beneficiaries of higher education programs for refugees. Interviews were analyzed through thematic analysis. Results suggest that the war severely disrupted Syrians’ sense of collective self, and that they repeatedly engaged in search for meaning, appraisals of the war, and reappraisals of shattered beliefs, life goals, and sense of purpose, both during wartime and in resettlement. In Portugal, despite persistent negative beliefs about the collective and ongoing and distressing searches for meaning, participants’ lived experiences concomitantly informed positive meaning reappraisals, including progressive restoration of worldviews, new opportunities for self-realization, and newly-found purpose, leading to perceived psychological benefits and growth. These findings suggest that meaning-making is both a trajectory and a dynamic process, informed by place and sociopolitical context. Clinical work to facilitate adaptive meaning-making and meaning-informed psychosocial interventions that help restore refugees’ shattered beliefs about safety, predictability, trust, and belonging, may be helpful directions to promote positive psychological adjustment and improve long-term integration prospects in refugees.

Measuring health-related quality of life in chronic headache: A comparative evaluation of the Chronic Headache Quality of Life Questionnaire and Headache Impact Test (HIT-6).

ObjectiveTo compare the quality and acceptability of a new headache-specific patient-reported measure, the Chronic Headache Quality of Life Questionnaire (CHQLQ) with the six-item Headache Impact Test (HIT-6), in people meeting an epidemiological definition of chronic headaches.MethodsParticipants in the feasibility stage of the Chronic Headache Education and Self-management Study (CHESS) (n = 130) completed measures three times during a 12-week prospective cohort study. Data quality, measurement acceptability, reliability, validity, responsiveness to change, and score interpretation were determined. Semi-structured cognitive interviews explored measurement relevance, acceptability, clarity, and comprehensiveness.ResultsBoth measures were well completed with few missing items. The CHQLQ’s inclusion of emotional wellbeing items increased its relevance to participant’s experience of chronic headache. End effects were present at item level only for both measures. Structural assessment supported the three and one-factor solutions of the CHQLQ and HIT-6, respectively. Both the CHQLQ (range 0.87 to 0.94) and HIT-6 (0.90) were internally consistent, with acceptable temporal stability over 2 weeks (CHQLQ range 0.74 to 0.80; HIT-6 0.86). Both measures responded to change in headache-specific health at 12 weeks (CHQLQ smallest detectable change (improvement) range 3 to 5; HIT-6 2.1).ConclusionsWhile both measures are structurally valid, internally consistent, temporally stable, and responsive to change, the CHQLQ has greater relevance to the patient experience of chronic headache.Trial registration number: ISRCTN79708100. Registered 16th December 2015, http://www.isrctn.com/ISRCTN79708100

The development and initial validation of the Breast Cancer Recurrence instrument (BreastCaRe)—a patient-reported outcome measure for detecting symptoms of recurrence after breast cancer

Patient-reported outomes (PRO) may facilitate prompt treatment. We describe the development and psychometric properties of the first instrument to monitor for symptoms of breast cancer (BC) recurrence. This study is nested in the MyHealth randomized trial of nurse-led follow-up based on electronically-collected PROs. We constructed items assessing symptoms of potential recurrence through expert interviews with six BC specialists in Denmark. Semi-structured cognitive interviews were carried out with a patient panel to assess acceptability and comprehensibility. Items were subsequently tested in a population of 1170 women 1-10years after completing BC treatment. We carried out multiple-groups confirmatory factor analysis (CFA) and Rasch analysis to test dimensionality, local dependence (LD) and differential item functioning (DIF) according to sociodemographic and treatment-related factors. Clinical data was obtained from the Danish Breast Cancer Group registry. Twenty-two items were generated for the Breast Cancer Recurrence instrument (BreastCaRe). Cognitive testing resulted in clearer items. Seven subscales based on general, bone, liver, lung, brain, locoregional and contralateral recurrence symptoms were proposed. Both CFA and Rasch models confirmed the factor structure. No DIF was identified. Five item pairs showed LD but all items were retained to avoid loss of clinical information. Rasch models taking LD into account were used to generate a standardized scoring table for each subscale. The BreastCaRe has good content and structural validity, patient acceptability and measurement invariance. We are preparing to examine the predictive validity of this new instrument.

Enhancing Language Access: A Pilot Study to Examine the Importance of Understanding the Language Preference and Acculturalization Level in the Provision of Healthcare for Hispanics Veterans With Traumatic Brain Injury.

The purpose of this pilot study was to obtain preliminary data to culturally adapt the Veteran Health Administration Traumatic Brain Injury (TBI) assessment instruments for the Hispanic Veteran population. A qualitative analysis explored the cognitive processes used by Hispanic Veterans whose preferred language was Spanish to understand a specific set of screening questions within the Initial TBI Screening, the Comprehensive TBI Evaluation, the Neurobehavioral Symptom Inventory (NSI), and the La Trobe Communication Questionnaire (LTCQ). A certified translator completed translation of the TBI instruments, an expert panel resolved inadequate expressions of the translations, and translated instruments were back translated. Male and female Hispanic Veterans with a positive TBI screening underwent a recorded administration of the TBI instruments, including LTCQ, followed by systematic debriefing using semi-structured cognitive interviews which then underwent qualitative analysis. The Marin's Short Acculturation Scale for Hispanics, the Tropp's Psychological Acculturation Scale, the English-Language Proficiency Test Series, and the TBI Demographic and Language Preference interview were administered to the subjects. Fifteen subjects were enrolled for the TBI instruments intervention; 11 of them completed all the additional procedures. The TBI instruments intervention seemed to produce very few variations, indicating adequate cultural equivalence. However, the LTCQ instrument showed suggested cultural variations, but did not suggest a lack of understanding or misinterpretation. The population studied displayed preferential connectedness to the Hispanic/Latino culture and to the Spanish language. The LTCQ indicated that subjects perceived themselves as having a worse execution in terms of communication skills than historical control and TBI groups. English-Language Proficiency Test Series found that most of the subject population did not demonstrate mastery of grade-appropriate basic social and academic vocabulary in English. Current findings highlight the importance of using linguistically and culturally appropriate materials upon evaluating Hispanic Veterans with a suspected TBI who have Spanish as their primary or preferred language.