Adaptation and psychometric assessment of a sexual and reproductive empowerment scale in Arabic among refugee and non-refugee adolescent girls.

BACKGROUND: Sexual and reproductive empowerment (SRE) is an important determinant of women's and girls' health yet measuring it is complex due to cultural and domain-specific variations. This study describes the process of adapting an SRE scale consisting of four domains (self-efficacy; future orientation; social support; and safety) and testing its psychometric properties among Arabic speaking adolescent girls in Lebanon. METHODS: An SRE scale developed in a Western context was adapted in four steps: (1) reviewing the scale and selecting culturally appropriate domains for translation to standard Arabic; (2) conducting cognitive interviews with 30 11-17-year-old adolescent girls in Lebanon; (3) administering the scale to 339 refugee adolescent girls who participated in an early marriage intervention; and (4) conducting confirmatory factor analysis (CFA) on the data to assess the scale's psychometric properties. RESULTS: The original model for the 13-item, four-domain adapted scale demonstrated poor fit in CFA. After iteratively removing two items, scale properties were improved, albeit were not optimal. The validity and reliability results for the self-efficacy domain were acceptable. Cognitive interview data revealed that Arab adolescent girls understood self-efficacy in relational terms, recognizing that autonomous decision-making is not necessarily favored but is influenced by parents and family. CONCLUSIONS: This study presents an effort to customize an SRE scale for use in studies on the health of adolescent girls in an Arab cultural context. Findings from cognitive interviews highlight the importance of taking into consideration relationality in adolescent sexual and reproductive decision-making. The self-efficacy domain in the adapted scale demonstrates acceptable psychometric properties and is recommended for use in health studies to capture SRE.

Design and development of a new pictorial tool to facilitate communication around advance care planning.

BACKGROUND: Advance care planning (ACP) aims to ensure that people with chronic or advanced disease receive medical care that is consistent with their values and preferences. However, professionals may find it challenging to engage these patients in conversations about the end of life. We sought to develop a pictorial tool to facilitate communication around ACP. METHODS: This was a three-phase study. In phase 1, we used the nominal group and Delphi techniques to achieve expert consensus regarding the conceptual content of the tool. In phase 2, a professional cartoonist was commissioned to create a series of cartoons representing each of the content areas resulting from the Delphi process. The pictorial tool was then administered (phase 3) with a sample of individuals with advanced/chronic disease to explore whether the cartoons were easy to understand and conveyed the intended message. RESULTS: Following a three-round Delphi process, consensus was reached regarding a set of 12 key content areas that should be considered in the context of an ACP interview. The cartoons created to represent each of the 12 areas were then reviewed and ordered so as to reflect the typical stages of an end-of-life care interview. After administering the pictorial tool with 24 frail older adults with advanced/chronic disease, changes were made to 9 of the 12 cartoons. CONCLUSIONS: The new pictorial tool comprises a set of 12 cartoons that can guide professionals as they seek to engage frail older adults with advanced/chronic disease in conversations about the end of life and ACP.

How do patients interpret and respond to a novel patient-reported eastern cooperative oncology group performance status (ECOG)?

PURPOSE: Performance status is an important concept in oncology, but is typically clinician-reported. Efforts are underway to include patient-reported measures in cancer care, which may improve patient symptoms, quality of life and overall survival. The purpose of this study was to gain a preliminary understanding of how patients determined their physical performance status based on a novel patient-reported version of the Eastern Cooperative Oncology Group Performance Status (ECOG) scale. METHODS: We conducted qualitative interviews, including concept elicitation and cognitive interviewing as part of the Patient Reports of Physical Functioning Study (PROPS) to investigate how participants selected their answers to a novel patient-reported ECOG. Participants were administered the patient-reported ECOG and asked to describe devices and modifications used to keep up with daily activities. RESULTS: Participants generally understood the ECOG as intended. Participants with recent changes in status had some difficulty selecting an answer. Most participants used modifications and assistive devices in their daily lives but did not incorporate these into their rational for the ECOG. CONCLUSION: The potential benefits of a patient-reported ECOG are numerous and this study demonstrates that participants were able to understand and answer the patient-reported ECOG as intended. We recommend future evaluation for the most-appropriate recall period, whether to include modifications in the ECOG instructions, and if increasing the number of response options to the patient-reported ECOG may improve confidence when providing an answer.

Response processes for patients providing quantitative self-report data: a qualitative study.

OBJECTIVE: To identify factors that influence response processes for patients providing quantitative self-report data. Secondly, due to the lack of integrative and explanatory models in this area, to develop a model of patients' response processes that can guide what to look for when considering validity evidence and interpreting scores on individual items. METHODS: Participants (n = 13) were recruited from a specialized substance use disorder treatment clinic and interviewed while responding to items from a clinical feedback system implemented for routine outcome monitoring in that setting. The interview approach was based on cognitive interviewing. Data collection and analysis were inspired by a grounded theory approach. RESULTS: We identified several variables that influenced the participants' response processes. The variables were organized into five categories: context-related variables; item-related variables; response base variables; reasoning strategies; and response selection strategies. We also found that the participants' responses for many items were affected by different aspects of the response process in ways that are relevant to interpretation but not necessarily discernible from the numerical scores alone, and we developed response categories to capture this. CONCLUSION: The findings suggest that patients providing quantitative self-report data encounter conditions in the response process that challenge and influence their ability to convey meaning and accuracy. This results in responses that for many of the items reflect messages important for interpretation and follow-up, even if it does not appear from the numerical scores alone. The proposed model may be a useful tool when developing items, assessing validity, and interpreting responses.

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.

The e-cigarette assessment for youth-Revised (EAsY-R): Preliminary results of a pilot study of measure refinement via cognitive interviewing.

The prevalence of youth vaping has, in a relatively short time, become an "epidemic." In the wake of such labeling by the Surgeon General, a number of important examinations of vaping have been conducted. These have largely focused on high school and college-age youth as this demographic shows the greatest prevalence of use. Nonetheless, no measure has been made available which might allow for the comprehensive assessment of quantity and frequency of vaping among this age group, thus aiding in standardization across settings. The current study utilized cognitive interviews with high school and college-age youth who use vaping devices to inform the preliminary development of such an assessment. The sample consists of eight students between the ages of 15 and 24 (Mage = 18.75, SD = 2.73, 62.5% female, 75.0% Hispanic/Latino/a/x, 100.0% White). Interviewing and measure refinement were conducted in a two-phase iterative fashion. Suggestions made during cognitive interviews resulted in the refinement of assessed content type, updated categories and pictures of vaping devices, as well as updated and age-relevant terminology. Further, instructions were streamlined, and assessment items and multiple-choice options were refined to maximize clarity and to minimize participant confusion. The result of this study, the E-Cigarette Assessment for Youth Revised, is a unique tool for standardizing examinations of the quantity and frequency of vaping behaviors among high school students and college-age youth.

Development and adaptation of the Emotion Regulation Skills Questionnaire for adolescents.

INTRODUCTION: The ability to effectively regulate one's emotions is important for adolescent mental health. However, extant assessments of how adolescents regulate their emotions can be expanded upon in several ways, including incorporating more strategies (e.g., cultural and spiritual) and positive emotions, and being informed by adolescents and expert consultation during the development process. Thus, our study aimed to improve the construct validity of an emotion regulation measure by adapting and refining the Emotion Regulation Skills Questionnaire (ERSQ) into an adolescent self-report. METHODS: We recruited 24 13-17-year-olds (12 males; 11 females; 1 gender fluid) via social media advertisement in the United States in 2020. We used an iterative qualitative approach in which we combined expert consultation, cognitive interviewing with adolescents, and top-down and bottom-up coding to review and provide feedback on the ERSQ. RESULTS: Findings of thematic analysis showed that a need for clarity in wording and inclusion of strategy examples across all sections of the ERSQ was needed. Adolescents also identified the need to replace the Silly/Excited section with a more age-appropriate positive emotion section. CONCLUSION: Findings indicate cognitive interviewing can be successfully completed in a virtual format when necessary, youth utilize a wider range of strategies to maintain or upregulate positive emotions than what is represented in current measures, and use of qualitative methods may have reduced construct underrepresentation and construct-irrelevant variance in the adapted ERSQ.

Content validation of a daily patient-reported outcome measure for assessing symptoms in patients with Small Intestinal Bacterial Overgrowth.

PURPOSE: The aim of this study was to generate evidence supporting the development and content validity of a new PRO instrument, the Small Intestinal Bacterial Overgrowth (SIBO) Symptom Measure (SSM) daily diary. The SSM assesses symptom severity in SIBO patients, with the ultimate goal of providing a fit for purpose PRO for endpoint measurement. METHODS: Qualitative research included 35 SIBO patients in three study stages, using a hybrid concept elicitation (CE)/cognitive interview (CI) method with US patients, ≥ 18 years. Stage 1 included a literature review, clinician interviews, and initial CE interviews with SIBO patients to identify symptoms important to patients for inclusion in the SSM. Stage 2 included hybrid CE/CI to learn more about patients' SIBO experience and test the draft SSM. Finally, stage 3 used CIs to refine the instrument and test its content validity. RESULTS: In stage 1 (n = 8), 15 relevant concepts were identified, with items drafted based on the literature review/clinician interviews and elicitation work. Within stage 2 (n = 15), the SSM was refined to include 11 items; with wording revised for three items. Stage 3 (n = 12) confirmed the comprehensiveness of the SSM, as well as appropriateness of the item wording, recall period, and response scale. The resulting 11-item SSM assesses the severity of bloating, abdominal distention, abdominal discomfort, abdominal pain, flatulence, physical tiredness, nausea, diarrhea, constipation, appetite loss, and belching. CONCLUSIONS: This study provides evidence supporting the content validity of the new PRO. Comprehensive patient input ensures that the SSM is a well-defined measure of SIBO, ready for psychometric validation studies.

Using cognitive interviews to improve a measure of organizational readiness for implementation.

BACKGROUND: Organizational readiness is a key factor for successful implementation of evidence-based interventions (EBIs), but a valid and reliable measure to assess readiness across contexts and settings is needed. The R = MC2 heuristic posits that organizational readiness stems from an organization's motivation, capacity to implement a specific innovation, and its general capacity. This paper describes a process used to examine the face and content validity of items in a readiness survey developed to assess organizational readiness (based on R = MC2) among federally qualified health centers (FQHC) implementing colorectal cancer screening (CRCS) EBIs. METHODS: We conducted 20 cognitive interviews with FQHC staff (clinical and non-clinical) in South Carolina and Texas. Participants were provided a subset of items from the readiness survey to review. A semi-structured interview guide was developed to elicit feedback from participants using "think aloud" and probing techniques. Participants were recruited using a purposive sampling approach and interviews were conducted virtually using Zoom and WebEx. Participants were asked 1) about the relevancy of items, 2) how they interpreted the meaning of items or specific terms, 3) to identify items that were difficult to understand, and 4) how items could be improved. Interviews were transcribed verbatim and coded in ATLAS.ti. Findings were used to revise the readiness survey. RESULTS: Key recommendations included reducing the survey length and removing redundant or difficult to understand items. Additionally, participants recommended using consistent terms throughout (e.g., other units/teams vs. departments) the survey and changing pronouns (e.g., people, we) to be more specific (e.g., leadership, staff). Moreover, participants recommended specifying ambiguous terms (e.g., define what "better" means). CONCLUSION: Use of cognitive interviews allowed for an engaged process to refine an existing measure of readiness. The improved and finalized readiness survey can be used to support and improve implementation of CRCS EBIs in the clinic setting and thus reduce the cancer burden and cancer-related health disparities.

Development and evaluation of an educational resource for parents of children with 22q11.2 deletion syndrome about the psychiatric manifestations of the condition.

Parents of children with 22q11.2 deletion syndrome (22q11DS) report concern about the psychiatric manifestations of the condition, but typically receive little information about this in clinical encounters and instead find information about it elsewhere. We developed an educational booklet about the psychiatric manifestations of 22q11DS and assessed its utility among parents of children with the condition. First, six parents of individuals with 22q11DS completed cognitive interviews to review an established generic booklet about the genetics of psychiatric conditions-and to suggest 22q11DS-specific adaptations. We used these suggestions to develop a novel booklet specific to psychiatric conditions and 22q1DS. Then, before and 1-month after reading the novel 22q11DS-specific online booklet, 73 parents of children with 22q11DS (with/without psychiatric conditions) completed validated scales (measuring empowerment, stigma, intolerance of uncertainty), an adapted version of a scale measuring worry about their child developing psychiatric illness, and purpose-designed items assessing perceptions of understanding of 22q11DS and mental illness, confidence in recognizing early signs, etc. After reading the 22q11DS online booklet, participants' feelings of empowerment increased (p = 0.002), while feelings of worry about their child developing psychiatric illness decreased (p = 0.05), and they reported better understanding 22q11DS and mental illness, and increased confidence in recognizing early warning signs. There is potential benefit in broadly distributing this educational booklet to parents of children with 22q11DS.

Translation and cross-cultural adaptation of the National Health Service Sustainability Model to the Chinese healthcare context.

BACKGROUND: International attention is being paid to the issue of making evidence sustainable after implementation. Developing an identification model is essential to promote and monitor the sustainability of evidence implementation. However, this model is not available in Chinese. This study aims to translate the National Health Service Sustainability Model into Chinese and to verify whether the model is adapted to the Chinese healthcare environment. METHODS: This study follows the translation and validation guidelines developed by Sousa and Rojjanasrirat. The translations include forward and backward translations and their comparison. Expert reviews were used to validate the content validity of the Chinese version of the National Health Service sustainability model. Cognitive interviews were used to assess the validity of the language in the Chinese setting. RESULTS: The translation was conducted by a bilingual research team and took 12 months. Expert reviews were undertaken with eight experts, and cognitive interviews with six participants. The content validity of the model is excellent, but at least 20% of the experts still felt that items one, three, five and nine needed refinements. In the cognitive interviews, most items, instructions and response options were well understood by the participants responsible for the evidence-based practice project. However, some language issues were still identified in items one, three, four, five, seven, nine, and ten. Participants reported that the sustainability results of the model assessment were consistent with their previous judgments of the items. Based on the expert review and interview results, items one, three, four, five, seven, nine and ten require further refinement. In summary, seven of the ten items have been amended. CONCLUSIONS: This study provides insight into how the National Health Service sustainability model can be used in the Chinese healthcare setting and paves the way for future large-scale psychometric testing.

Cultural adaptation of the Integrated Palliative care Outcome Scale for neurological symptoms.

OBJECTIVES: Standardized measures for assessing neurological patients needing palliative care remain scarce. The Integrated Palliative care Outcome Scale for neurological patients in its short form (IPOS Neuro-S8) helps assess and identify patients' symptom burden and needs early but has not yet been validated in German. The aim was to culturally adapt and translate the IPOS Neuro-S8 into the German health-care context and evaluate its face and content validity. METHODS: Cultural adaptation study following the first 6 out of 8 phases of the Palliative care Outcome Scale measures manual: (1) conceptual definition, (2) forward translation to German, (3) backward translation to English, (4) expert review, (5) cognitive debriefing, (6) proofreading. Neurological patients needing palliative care and clinical staff of the Department of Palliative Medicine or Neurology of the University Hospital of Cologne were included. Data were analyzed using thematic content analysis and descriptive statistics. RESULTS: A total of 13 patients and 16 clinical staff participated in this study. The expert review panel (phase 4) consisted of 11 additional members. While patients (n = 9) and clinical staff (n = 11) confirmed that the IPOS Neuro-S8 is an intelligible tool that is well accepted (phase 5), some linguistic and cultural differences were found between the original English and German versions. These mainly concerned the items mouth problems and spasms. SIGNIFICANCE OF RESULTS: The German version of the IPOS Neuro-S8 has demonstrated face and content validity and captures relevant symptoms of neurological patients needing palliative care. Its psychometric properties, including construct and criterion validity, will be investigated next.

PrEParing for NextGen: Cognitive Interviews to Improve Next Generation PrEP Modality Descriptions for Young Men Who have Sex with Men.

Next generation PrEP formulations may circumvent factors that impede daily oral pre-exposure prophylaxis (PrEP) use among young men who have sex with men (YMSM). We conducted video-based cognitive interviews with 20 YMSM (age 16-24) recruited in the US Northeast to assess participants' attitudes and comprehension of written descriptions of next generation PrEP modalities. Participants were predominately racial/ethnic minorities and half used daily oral PrEP. We identified four main areas for improvement of descriptions: defining scientific terms and balancing medical jargon and casual language; referencing more established products to contextualize PrEP formulations (e.g., hormonal implants); ensuring clarity and reducing redundancy; and including imagery (e.g., rectal douche applicator). The refined descriptions serve as exemplar text that may be used in future studies examining YMSM's preferences across next generation PrEP modalities. Accurate descriptions of next generation PrEP products strengthen measurement accuracy and can help roll-out products that become approved for clinical use.

RESUMEN: Las formulaciones de próxima generación para la profilaxis pre-exposición (PrEP) pueden eludir los factores que impiden el uso diario del PrEP oral en hombres jóvenes que tienen relaciones sexuales con hombres (YMSM). Realizamos entrevistas cognitivas usando videoconferencia con 20 YMSM (de 16 a 24 años) reclutados del noreste de los Estados Unidos con el fin de evaluar sus actitudes y su comprensión de las definiciones desarrolladas para describir las modalidades de PrEP de próxima generación. Los participantes eran predominantemente minorías raciales/étnicas y la mitad usaba PrEP oral diariamente. Identificamos cuatro áreas principales para mejorar las descripciones: definir términos científicos y equilibrar la jerga médica y el lenguaje casual; hacer referencia a productos más establecidos para contextualizar las formulaciones de PrEP (por ejemplo, implantes hormonales); garantizar la claridad y reducir la redundancia; e incluir imágenes (por ejemplo, aplicador de duchas rectales). Las descripciones refinadas sirven como texto ejemplar y pueden usarse en estudios futuros que examinen las preferencias de modalidades de PrEP de próxima generación entre YMSM. Las descripciones precisas de los productos PrEP de próxima generación fortalecen la precisión de la medición y pueden ayudar a implementar productos que se aprueben para uso clínico.

Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries.

BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.

Employing cognitive interviewing to evaluate, improve and validate items for measuring the health-related quality of life of women diagnosed with ovarian cancer.

BACKGROUND: Use of patient-reported outcome measures in clinical settings facilitate the delivery of better health care to improve patient health outcomes. Previously collected qualitative data indicated themes that could inform items for a health-related quality of life measure. This study investigated the content validity of items for inclusion in a new health-related quality of life measure suitable for patients with ovarian cancer. METHODS: Cognitive interviewing techniques were used with fourteen women diagnosed with ovarian cancer and at different times since diagnosis, to evaluate items derived from the previously collected qualitative dataset. A set of draft items was administered via telephone, Zoom and WhatsApp app together with questions on item meaning and wording. Interviews were transcribed and thematically analysed. RESULTS: Four broad themes emerged in relation to the questionnaire construction and comprehension of items: intent and clarity, wording, relevance and context, and overall questionnaire construct. All draft items were adjusted based on the interview findings. A final set of 38 health-related quality of life items comprised 7 items describing physical health and functioning, 21 describing emotional wellbeing and 10 items describing social wellbeing; each rated on a five-point frequency response scale. CONCLUSION: The items reflected a range of personal experiences associated with the patient clinical journey, creating a health-related quality of life tool specific to women diagnosed with ovarian cancer. The cognitive interviewing process established content validity for the tool, thereby, preparing it for field testing and evaluation of its psychometric properties. This study highlighted the fundamental role of cognitive interviewing during health-related quality of life questionnaire development to ensure that item content is grounded in patient feelings, functioning and meaning.

Improving Spanish translations of tobacco dependence measures using cognitive interviewing.

BACKGROUND: Cognitive interviewing is the practice of systematically collecting feedback about survey items from members of the priority population, with the goal of identifying and rectifying problems to increase the comprehensibility of the survey. Evidence is limited on the extent to which this method of pretesting improves survey items. OBJECTIVE: The current study examined the utility of incorporating cognitive interviewing to improve the Spanish translations of two measures of tobacco dependence. METHODS: Items from the Spanish versions of the Wisconsin Inventory of Smoking Dependence Motives (68 items) and Nicotine Dependence Syndrome Scale (19 items) were subjected to cognitive interviews with Spanish-speaking smokers. Problematic items were revised based on participant feedback and re-assessed in a second round of interviews (N = 23, 78.3% male; 21.7% female). RESULTS: Twenty-three of the 87 items demonstrated comprehension problems, and 67 items elicited at least one problem report. Number of problems were significantly fewer pre- vs. post-revision (t [90] = 6.55, p < .001). CONCLUSIONS: In combination with standard translation procedures, cognitive interviewing with the priority population appears to be a useful method for ensuring comprehensible and relevant item content.

RESUMEN Contexto: La entrevista cognitiva es la práctica de recopilar sistemáticamente información sobre los elementos de la encuesta de los miembros de la población prioritaria, con el objetivo de identificar y rectificar problemas para aumentar la comprensibilidad de la encuesta. La literatura científica existente es limitada en la medida en que este método de pruebas preliminares mejora los elementos de la encuesta. Objetivo: El estudio actual examinó la utilidad de incorporar entrevistas cognitivas para mejorar las traducciones al español de dos medidas de dependencia del tabaco. Métodos: Los elementos de las versiones en español del Inventario de Motivos de Dependencia del Fumar de Wisconsin (68 elementos) y la Escala del Síndrome de Dependencia de Nicotina (19 elementos) fueron sometidos a entrevistas cognitivas con fumadores hispanohablantes. Los ele-mentos problemáticos se revisaron basándose en la retroalimentación de los participantes y se reevaluaron en una segunda ronda de entrevistas (N = 23, 78,3% hombres; 21,7% mujeres). Resultados: Veintitrés de los 87 elementos demostraron problemas de comprensión, y 67 elementos presentaron por lo menos un reporte de problemas. El número de problemas fue significativamente menos antes y después de la revisión (t [90] = 6,55, p < 001). Conclusión: En combinación con los procedimientos de traducción estándar, las entrevistas cogni-tivas con la población prioritaria parecen ser un método útil para garantizar un contenido com-prensible y relevante para cada elemento.

What does the word healing mean to you? Perceptions of patients with life-limiting illness.

INTRODUCTION: There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes. OBJECTIVES: The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words. METHODS: As a part of a larger study that included cognitive interviewing, we asked the question "what does the word healing mean to you?" Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities. RESULTS: Thirty participants responded to the question "what does healing mean to you?" Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes. SIGNIFICANCE OF RESULTS: Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients' definitions provide greater insight into perceptions and expectations regarding the healing process.

Cross-cultural adaptation of the EAST and CASE screening tools for elder abuse in South Africa.

Elder abuse is globally considered a hidden problem with great variations in its conceptualization across cultures, non-uniformity in understanding, and manifestations of abuse and neglect. Currently, there are no validated or culturally adapted screening measures for elder abuse in South Africa. The aim of this study was to test the cultural appropriateness of the Elder Abuse Screening Tool (EAST) and the Caregiver Abuse Screen (CASE) in two regions and four languages in South Africa. Using a cognitive interviewing methodology, 23 carers and 19 older adults were interviewed. Findings show that questions in the EAST and CASE are generally well understood, but that adaptations of both tools are necessary for use within South Africa. Fear, knowledge, and experience of crime also showed that strangers, like family, deliberately use deception to build trust and abuse. Further validation is needed to determine suitable scoring and use by health and social care practitioners.

Measuring Health Status in Long-Term Residential Care: Adapting the Veterans RAND 12 Item Health Survey (VR-12©).

Objectives: Measuring the perceived mental and physical health status of older adults living in long-term residential care (LTRC) is central to patient-centered care. This study examined the qualitative content validity of the Veterans RAND 12 Item Health Survey (VR-12) for LTRC and, based on the findings, the authors developed an adapted version of the generic patient-reported outcome measure for this population.Methods: Content validity was evaluated in two steps: (1) initial resident feedback (n = 9) and research team consensus discussions and (2) cognitive interviews with residents (n = 18) and a research team consensus discussion. The cognitive interviews examined comprehension, acceptability, and relevance of the VR-12 items.Results: Two VR-12 items had limited acceptability in the LTRC setting, the reference to "work" in items was irrelevant to residents, and the lack of a frame of reference ("During the past week … ") impacted comprehension of several items.Conclusions: Study findings informed the development of an adapted version of the VR-12 for older adults living in Canadian LTRC homes and provided content validity evidence regarding its relevance and appropriateness for this population.Clinical implications: Measuring the health status of older adults living in LTRC can help to monitor changes in health status over time and support person-centered care.

Cognitive testing of a survey instrument to assess sexual practices, behaviours, and health outcomes: a multi-country study protocol.

BACKGROUND: Population level data on sexual practices, behaviours and health-related outcomes can ensure that responsive, relevant health services are available for all people of all ages. However, while billions of dollars have been invested in attempting to improve sexual and reproductive health (including HIV) outcomes, far less is understood about associated sexual practices and behaviours. Therefore, the World Health Organization embarked on a global consultative process to develop a short survey instrument to assess sexual health practices, behaviours and health outcomes. In order for the resulting draft survey instrument to be published as a 'global' standard instrument, it is important to first determine that the proposed measures are globally comprehensible and applicable. This paper describes a multi-country study protocol to assess the interpretability and comparability of the survey instrument in a number of diverse countries. METHODS: This study will use cognitive interviewing, a qualitative data collection method that uses semi-structured interviews to explore how participants process and respond to survey instruments. We aim to include study sites in up to 20 countries. The study procedures consist of: (1) localizing the instrument using forward and back-translation; (2) using a series of cognitive interviews to understand how participants engage with each survey question; (3) revising the core instrument based on interview findings; and (4) conducting an optional second round of cognitive interviews. Data generated from interviews will be summarised into a predeveloped analysis matrix. The entire process (a 'wave' of data collection) will be completed simultaneously by 5+ countries, with a total of three waves. This stepwise approach facilitates iterative improvements and sharing across countries. DISCUSSION: An important output from this research will be a revised survey instrument, which when subsequently published, can contribute to improving the comparability across contexts of measures of sexual practices, behaviours and health-related outcomes. Site-specific results of the feasibility of conducting this research may help shift perceptions of who and what can be included in sexual health-related research.