Desarrollo de la entrevista ESNA: un instrumento para evaluar el sufri-miento en niños y adolescentes con enfermedades graves y necesidades paliativas / Development of the ESNA interview: An instrument to assess suffering in children and adolescents with serious illnesses and palliative needs

Introducción: Hay una carencia de instrumentos específicos para evaluar el sufrimiento de niños y adolescentes con necesidades paliativas. Objetivo: Describir el proceso de diseño y creación del instrumento para la Evaluación del Sufrimiento en Niños y Adolescentes (ESNA) con necesidades paliativas. Método: 1) Revisión sistemática de la literatura; 2) Establecer marco teórico; 3) Definir los criterios del instrumento; 4) Establecer temáticas relacionadas con el sufrimiento; 5) Validación de contenido por expertos; 6) Validez de facie por pacientes; y 7) Prueba piloto. Resultados: 1) De 750 artículos, se evalúan 161 y se incluyen 51; 2) el marco teórico incorpora el Modelo integrativo del Sufrimiento de Kriokorian, y el Modelo Ecológico de Afrontamiento del Estrés de Brofenbrenner; 3) los criterios priorizan brevedad, lenguaje claro y preguntas relevantes; 4) temáticas relevantes establecidas con 18 adolescentes: vivencia de la enfermedad, gestión de la información, impacto emocional, relación con los otros y el impacto en los otros; 5) 14 profesionales realizan juicio de expertos de la versión preliminar; 6) 8 pacientes realizaron valoración aparente de contenido; y 7) Prueba piloto y análisis cualitativo con 8 pacientes. El instrumento ESNA final es heteroadministrado, con 42 preguntas (26 son exploratorias y 16 ítems cuantitativos). Explora: Experiencia de Enfermedad Gestión de la Información; Esperanza y expectativas; Regulación Emocional; Impacto en los otros; y Aspectos relacionales. Conclusiones: El instrumento ESNA parece ser una herramienta apropiada para la identificación del sufrimiento en niños y adolescentes con necesidades paliativas estando pendiente la evaluación de sus propiedades psicométricas (AU)

Introduction: There is a lack of specific instruments to assess the suffering of children and adolescents with palliative needs. Objective: Describe the process of designing and creating the instrument for the Assessment of Suffering in Children and Adolescents (ESNA) with palliative needs. Method: 1) Literature review; 2) Establish theoretical framework; 3) Define the criteria of the instrument; 4) Establish themes related to suffering; 5) Validation of content by experts; 6) Validity of facie by patients; and 7) Pilot test. Results: 1) Of 750 articles, 161 are evaluated and 51 are included; 2) the theoretical framework incorporates the Kriokorian Integrative Model of Suffering, and the Brofenbrenner Ecological Model of Coping with Stress; 3) the criteria prioritize brevity, clear language and relevant questions; 4) relevant themes established with 18 adolescents: experience of the disease, information management, emotional impact, relationship with others and the impact on others; 5) 14 professionals carry out expert judgment of the preliminary version; 6) 8 patients made an apparent assessment of content; and 7) Pilot test and qualitative analysis with 8 patients. The final ESNA instrument is hetero-administered, with 42 questions (26 are exploratory and 16 quantitative items). Explore: Experience of Illness; Information management; Hope and expectations; Emotional Regulation; Impact on others; and relational aspects. Conclusions: The ESNA instrument seems to be an appropriate tool for the identification of suffering in children and adolescents with palliative needs, pending the evaluation of its psychometric properties (AU)

Changes in Attachment Representation and Personality Organization in Transference-Focused Psychotherapy.

OBJECTIVE: The aim of this article was to construct an empirical bridge between object relations theory and attachment theory by investigating how researchers in both traditions have contributed to understanding and assessing identity diffusion (a keystone of personality pathology) and object relations in patients with borderline personality disorder during 1 year of transference-focused psychotherapy (TFP). METHODS: The Adult Attachment Interview (AAI) and the Structured Interview of Personality Organization (STIPO) were administered to patients (N=104, all women) before and after 1 year of treatment. This study was part of a randomized controlled trial in which 104 patients with borderline personality disorder were randomly assigned to receive either TFP (a manualized, structured psychodynamic treatment approach) or treatment by experienced community psychotherapists. Changes on the AAI in attachment representations, narrative coherence, and reflective function were examined for their associations with changes on the STIPO in identity, object relations, and aggression. RESULTS: Patients who shifted from disorganized (unresolved) to organized attachment on the AAI after 1 year of TFP (but not treatment by experienced community psychotherapists) showed hypothesized improvements in domains of personality organization on the STIPO, including identity, object relations, and aggression. Those who did not change from disorganized (unresolved) to organized attachment improved only in the domain of aggression. CONCLUSIONS: These findings highlight the centrality of identity diffusion to borderline personality disorder pathology and the importance of targeting it in treatment. Furthermore, the results suggest that identity may be indexed by measures of attachment security, narrative coherence, and personality organization.

Design and field procedures for the clinical reappraisal of the Composite International Diagnostic Interview version 3.3 in Qatar's national mental health study.

BACKGROUND: The Composite International Diagnostic Interview (CIDI) has been clinically reappraised in several studies conducted mainly in the US and Europe. This report describes the methodology used to conduct one of the Middle East's largest clinical reappraisal studies. The study was carried out in conjunction with the World Mental Health Qatar-the first national psychiatric epidemiological study of common mental disorders in the country. This study aimed to evaluate the diagnostic consistency of core modules of the newly translated and adapted Arabic version of the CIDI 5.0 against the independent clinical diagnoses based on the Structured Clinical Interview for DSM-5 (SCID-5). METHODS: Telephone follow-up interviews were administered by trained clinicians using the latest research edition of the SCID for DSM-5. Telephone administered interviews were key in the data collection, as the study took place during the COVID-19 pandemic. RESULTS: Overall, within 12 months, 485 interviews were completed. The response rate was 52%. Quality control monitoring documented excellent adherence of clinical interviews to the rating protocol. CONCLUSIONS: The overall methods used in this study proved to be efficient and effective. For future research, instrument cultural adaptation within the cultural context is highly recommended.

"I do not remember You are reminding me now!": Children's difficult experiences during forensic interviews about online sexual solicitation.

BACKGROUND: Forensic interviews for children who have undergone online sexual solicitation (OSS) constitute a unique setting compared to other forms of child sexual abuse (CSA). In these cases, the interviewer holds concrete evidence of the abuse in the form of pictures or texts. During the interview, interviewers use these materials to advance the data collection regarding the abuse, a practice that may significantly influence the child's wellbeing. OBJECTIVE: The current study aims to explore children's experiences during forensic interviews concerning OSS. PARTICIPANTS AND SETTING: The sample included 20 Jewish children in Israel who were referred to and participated in a forensic investigation. METHODS: A thematic qualitative methodology was used to analyze the children's narratives. RESULTS: The findings demonstrate the children's difficulties when confronted with materials related to the abuse. The children detailed the different ways the interview challenged their wellbeing, including visualizing and verbalizing the abuse, new insights, and being videotaped. CONCLUSIONS: The findings in the current study emphasized the intrinsic challenges that children face in OSS forensic interviews resulting from the tension between the interviewer's need to collect details about the abuse and the child's desire to forget it. Practical ramifications pertaining to these threats to the child's wellbeing, future recommendations, and limitations of the study will be discussed.

Emotional valence and the types of information provided by children in forensic interviews.

BACKGROUND: Emotions can powerfully affect memory retrieval although this effect has seldom been studied in everyday contexts. OBJECTIVE: This study aimed to explore the association between children's verbal emotional expressions and the type of information reported during forensic interviews. PARTICIPANTS AND SETTING: The sample included 198 interviews with 4- to 14-year-old (M = 9.36, SD = 2.37) alleged victims of repeated physical abuse perpetrated by family members conducted using the Revised NICHD Protocol which emphasizes a supportive interviewing style. METHODS: Interview videos were transcribed and each conversational turn was coded to reflect the amount and type of children's verbal emotional expressions, forensic information provided, interviewers' demeanor, and type of question asked. RESULTS: The verbal expression of negative emotions was positively associated with the production of more central details (ß = 0.29, SE = 0.05, p < 0.001) and peripheral details (ß = 0.66, SE = 0.07, p < 0.001), while the verbal expression of positive emotions was correlated with peripheral details (ß = 0.29, SE = 0.15, p = 0.047). The verbal expression of negative emotions was associated with the production of more specific details (ß = 0.73, SE = 0.06, p < 0.001]) and less generic information (ß = -0.39, SE = 0.18, p = 0.029) whereas positive emotions were associated only with increased specific information (ß = 0.28, SE = 0.12, p = 0.025). CONCLUSIONS: These findings highlight how emotional expression, especially of negative emotions, enhances the quantity and quality of children's reports in forensic contexts.

Desenvolvimento e validação da versão em português da friends and family interview / Developing and validation the portuguese version of the friends and family interview / Desarrollo y validación de la versión portuguesa de la friends and family interview

O objetivo deste estudo foi a adaptação e validação da entrevista Friends and Family Interview que avalia o estilo de apego e a função reflexiva de crianças e adolescentes. Para adaptação, foram avaliadas a equivalência semântica, idiomática, experiencial e conceitual entre a versão traduzida e o instrumento original. A versão final da entrevista foi aplicada a uma amostra clínica de jovens entre 9 e 17 anos (M=13,12; DP=2,72) do sul do Brasil. Constatou-se que a versão em português apresentou uma consistência interna alta (α=0,79), assim como uma boa concordância entre avaliadores (α=0,89). A análise fatorial exploratória revelou dois componentes principais que melhor explicaram os dados, denominados Segurança nos Relacionamentos e Funcionamento Reflexivo (α=0,95) e Insegurança do Apego (α=0,72). Os resultados apoiaram a validade de construto e de critério da FFI e forneceram evidências de sua utilidade na avaliação do apego e da função reflexiva na infância e adolescência. (AU)

The study aimed to adapt and validate the Friends and Family Interview that assesses the attachment style and the reflective function in children and adolescents. The semantic, idiomatic, experiential and conceptual equivalences between the original and the translated version were analyzed. Then the final version was applied in a clinic sample of young people ranging from 9 to 17 years of age (M=13.12 SD=2.72 years), of southern Brazil. The statistical tests showed a high internal consistency (α=.79), as well as a good inter-evaluators reliability (α=.89) in the Portuguese version of the FFI. Exploratory factor analysis yielded two main factors, Relationships Security and Reflective Functioning (α=.95) and Attachment Insecurity (α=.72). The data supported the construct and criterion validities of the Portuguese version of the interview protocol. The FFI is a useful tool for the evaluation of attachment and reflective function in children and adolescents. (AU)

El objetivo de este estudio fue la adaptación y la validación de la entrevista Friends and Family Interview (FFI) que evalúa el estilo de apego y la función reflexiva de niños y adolescentes. Para la adaptación se evaluó la equivalencia semántica, idiomática, experiencial y conceptual entre la versión traducida y el instrumento original. La versión final de la entrevista se aplicó a una muestra clínica de jóvenes entre 9 y 17 años (M=13,12; DS=2,72) del sur de Brasil. Se encontró que la versión portuguesa tenía una alta consistencia interna (α=0,79), así como una buena concordancia entre evaluadores (α=0,89). El análisis factorial exploratorio reveló dos componentes principales, denominados Seguridad en las Relaciones y Funcionamiento Reflexivo (α=0,95) e Inseguridad del Apego (α=0,72). Los resultados apoyaron la validez de criterio y constructo de la FFI y proporcionaron evidencias de su utilidad para evaluar el apego y la función reflexiva en la niñez y en la adolescencia. (AU)

Impact on routine psychiatric diagnostic practice from implementing the DSM-5 cultural formulation interview: a pragmatic RCT in Sweden.

BACKGROUND: Culture and social context affect the expression and interpretation of symptoms of distress, raising challenges for transcultural psychiatric diagnostics. This increases the risk that mental disorders among migrants and ethnic minorities are undetected, diagnosed late or misdiagnosed. We investigated whether adding a culturally sensitive tool, the DSM-5 core Cultural Formulation Interview (CFI), to routine diagnostic procedures impacts the psychiatric diagnostic process. METHOD: We compared the outcome of a diagnostic procedure that included the CFI with routine diagnostic procedures used at Swedish psychiatric clinics. New patients (n = 256) admitted to a psychiatric outpatient clinic were randomized to a control (n = 122) or CFI-enhanced diagnostic procedure (n = 134) group. An intention-to-treat analysis was conducted and the prevalence ratio and corresponding 95% confidence intervals (CI) were calculated across arms for depressive and anxiety disorder diagnoses, multiple diagnoses, and delayed diagnosis. RESULTS: The prevalence ratio (PR) of a depressive disorder diagnosis across arms was 1.21 (95% CI = 0.83-1.75), 33.6% of intervention-arm participants vs. 27.9% of controls. The prevalence ratio was higher among patients whose native language was not Swedish (PR =1.61, 95% CI = 0.91-2.86). The prevalence ratio of receiving multiple diagnoses was higher for the CFI group among non-native speaking patients, and lower to a statistically significant degree among native Swedish speakers (PR = .39, 95% CI = 0.18-0.82). CONCLUSIONS: The results suggest that the implementation of the DSM-5 CFI in routine psychiatric diagnostic practice may facilitate identification of symptoms of certain psychiatric disorders, like depression, among non-native speaking patients in a migration context. The CFI did not result in a reduction of patients with a non-definite diagnosis. TRIAL REGISTRATION: ISRCTN51527289 , 30/07/2019. The trial was retrospectively registered.

"It doesn't work at all, that's my experience": Swedish forensic interviewers' views on interpreter-mediated child interviews.

BACKGROUND: Legal practitioners have expressed concerns regarding the quality of interpreter-mediated forensic interviews with child witnesses. OBJECTIVE: This mixed-methods study aimed to examine Swedish forensic interviewers' experiences of conducting child interviews via a language interpreter. PARTICIPANTS AND SETTING: Forty-one forensic interviewers from the Swedish Police Authority with experience conducting interpreter-mediated child interviews participated in a digital survey. METHODS: Their responses were analyzed using both qualitative (thematic and content analyses) and quantitative (descriptive and inferential statistics) approaches. RESULTS: The forensic interviewers' general experiences of conducting interpreter-mediated child interviews were negative. Limited access to authorized legal interpreters and doubts regarding the accuracy of interpretation were described as major obstacles in these investigations. The presence of an interpreter could negatively impact children's disclosure process and limit their chances of expressing their views during legal proceedings. CONCLUSIONS: According to Swedish forensic interviewers, the quality of interpreter-mediated child interviews urgently needs to be addressed. Our results are consistent with previous surveys from Australia and the United States, highlighting the international relevance of these topics. Future improvements are vital to ensure that all children are provided an equal right to be heard during criminal investigations, regardless of the native language.

Mapping Details to Elicit Information and Cues to Deceit: The Effects of Map Richness / Mapeando los detalles para obtener información e indicios de engaño: los efectos de la riqueza del mapa

Background:Investigators often use maps in forensic interviews to verify a route that was taken by a suspect to obtain additional information, and to assess credibility.Method: We examined the effects of the level of map richness on the elicitation of information and cues to deceit. A total of 112 participants completed a mock secret mission and were asked to tell the truth (to a friendly agent) or to lie (to a hostile agent) about it in an interview. In phase 1 of the interview, all participants provided a verbal free recall of the mission. In phase 2, half of the participants were given a detailed map that included all street names and landmarks of the city where they completed the mission (zoomed in to 80%), and the other half were given a less detailed map that included the names of only major streets and landmarks (zoomed in to 60%). All participants were asked to verbally describe the mission and the route taken while sketching on the map. Results: Compared to lie tellers, truth tellers provided more location, action, temporal, and object details and complications in phase 1, and new person, location, action, and object details and complications in phase 2. Map richness did not have an effect on the amount of information elicited and had an equal effect on truth tellers and lie tellers. Conclusions: This initial experiment in this research area suggests that investigators do not have to worry about the exact level of map detailedness when introducing maps in interviews.

Antecedentes: Los investigadores utilizan a menudo mapas en las entrevistas forenses para verificar el camino seguido por un sospechoso para obtener más información y para valorar la credibilidad. Método: Analizamos los efectos del nivel de riqueza del mapa en la obtención de información e indicios de engaño. Un total de 112 participantes simularon participar en una misión secreta, pidiéndoseles que, en una entrevista, dijeran la verdad (a un agente amistoso) o mintieran (a un agente hostil) sobre la misión. En la fase 1 de la entrevista se recabó de los participantes un recuerdo libre de la misión y en la fase 2 se facilitó a la mitad un mapa detallado con los nombres de las calles y puntos de referencia de la ciudad en la que habían llevado a cabo la misión (ampliado hasta el 80%) y a la otra mitad se les dio un mapa menos detallado solo con los nombres de las calles y puntos de referencia principales (ampliado hasta el 60%). Se pidió a los participantes que describieran verbalmente la misión y el camino seguido al tiempo que la proyectaban en el mapa. Resultados: En comparación con los participantes instruidos para mentir, los instruidos para contar la verdad daban más detalles sobre ubicación, acciones, tiempo y objetos y complicaciones en la fase 1 y detalles nuevos sobre personas, ubicaciones, acciones y objetos y complicaciones en la fase 2. La riqueza del mapa no influía en el volumen de información producida y tenía el mismo efecto, tanto en los instruidos para contar la verdad como una mentira. Conclusiones: Este primer experimento en esta área de investigación sugiere que los investigadores no deben preocuparse por el nivel exacto de detalle del mapa cuando introduzcan estos en las entrevistas.

Psychotherapy for Functional Neurological (Conversion) Disorder: A Case Bridging Mind, Brain, and Body.

Functional neurologic (conversion) disorder (FND) is a core neuropsychiatric condition directly at the intersection of psychiatry and neurology. Over the past several decades, renewed interest in FND has been catalyzed by use of a "rule-in" diagnostic approach leveraging positive clinical signs specific for the diagnosis. In parallel, advances have occurred in identifying mechanisms, etiologic factors, and evidence-based treatments for this population. While "one size fits all" formulations of the "conversion" of psychological distress into physical symptoms are no longer widely accepted, emotion processing and related psychological constructs (eg, alexithymia, dissociation, threat avoidance) remain central to the conceptual understanding of FND. Furthermore, the biopsychosocial model (foundational to psychiatry) is the prevailing model through which to guide longitudinal treatment, with psychotherapy as an emerging first line intervention for FND. Nonetheless, there is a striking dearth of psychotherapists and mental health providers more broadly that feel well versed in the clinical assessment and management of patients with FND. In this article, we seek to address this gap by presenting the psychotherapy treatment narrative of a woman experiencing paroxysmal functional speech and gait disorder symptoms who had a positive clinical outcome. Our goal with this case presentation and related discussion is to increase the proficiency of psychotherapists in providing treatment to patients with FND.

The bigger picture of shared decision making: A service design perspective using the care path of locally advanced pancreatic cancer as a case.

PURPOSE: Solutions to improve the implementation of shared decision making (SDM) in oncology often focus on the consultation, with limited effects. In this study, we used a service design perspective on the care path of locally advanced pancreatic cancer (LAPC). We aimed to understand how experiences of patients, their significant others, and medical professionals over the entire care path accumulate to support their ability to participate in SDM. PARTICIPANTS AND METHODS: We used qualitative interviews including design research techniques with 13 patients, 13 significant others, and 11 healthcare professionals, involved in the diagnosis or treatment of LAPC. The topic list was based on the literature and an auto-ethnography of the illness trajectory by a caregiver who is also a service design researcher. We conducted a thematic content analysis to identify themes influencing the ability to participate in SDM. RESULTS: We found four interconnected themes: (1) Decision making is an ongoing and unpredictable process with many decision moments, often unannounced. The unpredictability of the disease course, tumor response to treatment, and consequences of choices on the quality of life complicate decision making; (2) Division of roles, tasks, and collaboration among professionals and between professionals and patients and/or their significant others is often unclear to patients and their significant others; (3) It involves "work" for patients and their significant others to obtain and understand information; (4) In "their disease journey," patients are confronted with unexpected energy drains and energy boosts, that influence their level of empowerment to participate in SDM. CONCLUSION: The service design perspective uncovered how the stage for SDM is often set outside the consultation, which might explain the limited effect currently seen of interventions focusing on consultation itself. Our findings serve as a starting point for (re)designing care paths to improve the implementation of SDM in oncology.

Combining verbal veracity assessment techniques to distinguish truth tellers from lie tellers / Combinando técnicas verbales de evaluación de la veracidad para discriminar testimonios verdaderos de falsos

Cognitive Credibility Assessment (CCA) is a verbal lie detection tool consisting of several interview techniques. These techniques have been examined separately but never together. Reflecting the dynamic nature of CCA we combined several of the techniques (free recall followed by a model statement, followed by a reverse order instruction, and followed by a sketch instruction). We examined the new information provided after each stage of the interview and also compared the information provided in the initial recall with the information provided after the entire interview. A total of 47 truth tellers and 47 lie tellers went on a mission. Truth tellers were asked to report their mission truthfully, whereas lie tellers were requested to lie about several aspects of the mission. We measured the total units of information (total details) provided in the interview and the number of complications reported. The results indicate that the pre-registered hypothesis (Hypothesis 1) was supported for complications. Truth tellers reported more complications than lie tellers in each stage of the interview and the difference was more pronounced after the entire interview than after the free recall. As a conclusion, CCA was an effective lie detection method when complications were taken into account

La evaluación cognitiva de la credibilidad (ECC) es una herramienta verbal de detección de mentiras que incluye varias técnicas de entrevista. Dichas técnicas se han examinado por separado pero nunca juntas. Para reflejar el carácter dinámico de la ECC combinamos varias de las técnicas (recuerdo libre seguido de una declaración tipo, seguido de una instrucción de recuerdo en orden inverso, y de una instrucción para que hagan un sketch -esquema- durante la narración del evento). Analizamos la información nueva proporcionada tras cada etapa de la entrevista y también comparamos la información procedente del recuerdo inicial con la aportada por toda la entrevista. Un total de 47 sujetos que decían la verdad y 47 que mentían fueron enviados a una misión. A los participantes de la condición de testimonio verdadero se les pidió que informaran de su misión de modo veraz, mientras que los de la condición de mentira se les solicitó que mintieran sobre distintos aspectos de la misión. Se midió el total de unidades de información (detalles totales) de la entrevista y el número de complicaciones de las que se informaba. Los resultados mostraron que los participantes de la condición de verdad informaban de más detalles y complicaciones (hipótesis 1) en cada fase de la entrevista siendo las mayores diferencias tras la entrevista global que tras el recuerdo libre. En conclusión, la categoría complicaciones de la ECC es eficaz en la detección de la mentira

Commentary: the ethical challenges of machine learning in psychiatry: a focus on data, diagnosis, and treatment.

The clinical interview is the psychiatrist's data gathering procedure. However, the clinical interview is not a defined entity in the way that 'vitals' are defined as measurements of blood pressure, heart rate, respiration rate, temperature, and oxygen saturation. There are as many ways to approach a clinical interview as there are psychiatrists; and trainees can learn as many ways of performing and formulating the clinical interview as there are instructors (Nestler, 1990). Even in the same clinical setting, two clinicians might interview the same patient and conduct very different examinations and reach different treatment recommendations. From the perspective of data science, this mismatch is not one of personal style or idiosyncrasy but rather one of uncertain salience: neither the clinical interview nor the data thereby generated is operationalized and, therefore, neither can be rigorously evaluated, tested, or optimized.

Bodily Experience in Depression: Using Focusing as a New Interview Technique.

INTRODUCTION: Research on body aspects in depression primarily focuses on somatic complaints, while phenomenologists emphasize the pre-reflective bodily experience of depression as relevant for the psychopathology of it. Despite this increasing acknowledgement of the subjective body's impact on depression, empirically, it remains rarely studied. METHODS: Relying on the psychotherapy method of Focusing (Gendlin, 1982), interviews were developed, which enable participants with depression to get in contact with pre-reflective bodily experiences through turning inward, attentively observing all bodily feelings that arise, and finding symbolizations for these feelings. RESULTS: In 501 codings of the conducted interviews, the theme of passivity emerged on a continuum ranging from inhibition of drive to lack of drive. It can be split into 5 components (heaviness, emptiness, paralysis, blockage, and alienation), which were felt in the head or the whole body. Moreover, participants reported active, pressuring feelings in the chest and stomach areas, which were associated with specific emotions in some participants. DISCUSSION: In conclusion, through focusing, participants were able to take note of their pre-reflective bodily feelings and described feelings of passivity, active, pressuring feelings, and an ambivalence between these two parts. Results support the notion that depression is associated with specific pre-reflective bodily experiences and lay a foundation for future research.

Contextualizing the lived experiences of patients with low back pain from different countries according to the ICF framework.

OBJECTIVE: To explore perspectives, including social and psychological aspects, of patients seeking manual care for low back pain, in order to understand constructs of functioning that are important across different cultural contexts. The International Classification of Functioning, Disability and Health (ICF) emphasizes the importance of these aspects to describe health-related functioning. DESIGN: Focus group interviews. PATIENTS: Patients from Botswana, Canada and Norway seeking manual care for their low back pain. METHODS: Interviews were conducted in the 3 countries, transcribed verbatim, translated into English, and linked to the ICF according to established rules. RESULTS: Seven focus groups yielded 1,863 meaningful concepts that were linked to ICF categories. The largest proportion of responses linked to the Activities and Participation domain. The most frequently mentioned chapters related to pain and its mental aspects, suggesting that the psychological impact of living with low back pain is important to patients. CONCLUSION: Despite cultural differences, patients seeking manual care for low back pain in Botswana, Canada and Norway reported similar experiences of disability across ICF domains. The relatively high ranking of psychosocial factors highlights their importance for patients, in addition to factors of biological origin, and indicates that the contextual nature of the lived experience of low back pain may not be covered in standard examinations used in manual medicine.

Development of a New Quality of Life Measure for Duchenne Muscular Dystrophy Using Mixed Methods: The DMD-QoL.

OBJECTIVE: Based on concerns about existing patient-reported outcome measures (PROMs) for assessing quality of life (QoL) in Duchenne muscular dystrophy (DMD), we describe the mixed methods development of a new QoL PROM for use in boys and men with DMD: the DMD-QoL. METHODS: The DMD-QoL was developed in 3 stages. First, draft items were generated from 18 semistructured qualitative interviews with boys and men with DMD, analyzed using framework analysis. Second, cognitive debriefing interviews with patients (n = 10), clinicians (n = 8), and patients' parents (n = 10) were undertaken, and a reduced item set was selected and refined. Third, psychometric data on the draft items from a cross-sectional online survey (n = 102) and stakeholder input from patients and patients' parents were used to produce the final questionnaire. Patient and public involvement and engagement was embedded throughout the process. RESULTS: From an initial draft of 47 items, a revised set of 27 items was produced at stage 2, and this set was further refined at stage 3 to generate the DMD-QoL, a 14-item QoL PROM. The DMD-QoL is designed for use from 7 years of age by proxy report and from 10 years of age by self-report or proxy report. The final measure showed good psychometric properties. CONCLUSION: The DMD-QoL is a new 14-item QoL PROM for boys and men with DMD, with demonstrable content and face validity.

Romantic Relationships in Transgender Adolescents: A Qualitative Study.

BACKGROUND: Identity formation and exploration of interpersonal relationships are important tasks that occur during adolescence. Transgender, gender diverse, and gender-nonconforming (TGNC) individuals must face these developmental milestones in the context of their transgender identity. Our aim with this article is to describe adolescents' history and experiences with romantic partners. METHODS: We conducted phenomenological, qualitative semistructured interviews with transgender adolescents. Questions were focused on romantic experiences, thoughts, and perceptions. All interviews were coded by 2 members of the research team, with disagreements resolved by discussion and, if needed, with a third member of the research team. Thematic analysis was used to analyze the data, as well as descriptive categorization. RESULTS: In total, 30 adolescents (18 transmasculine and 12 transfeminine) between the ages of 15 and 20 years were interviewed. Themes included (1) engagement in romantic relationships, (2) disclosure of gender identity and romantic relationships, (3) experience with abusive relationships, and (4) perceived impact of gender-affirming hormone care on romantic experiences. CONCLUSIONS: TGNC adolescents are engaged in romantic experiences before and during social and/or medical transitioning and are cultivating relationships through both proximal peers and online connections. There is perceived benefit of gender-affirming hormone care on romantic experiences. Risk of transphobia in romantic relationships impacts the approach that transgender adolescents take toward romance and influences decisions of identity disclosure. TGNC adolescents have experience with relationship abuse in different forms. Providers can incorporate these findings in their approach to counseling and screening when caring for TGNC youth.

Using Cognitive Interviewing to Design Interventions for Implementation in Oncology Settings.

BACKGROUND: Implementation of effective interventions into clinical practice is slow, in large part, because researchers do not sufficiently attend to the realities of nurses who implement interventions. OBJECTIVES: The aim of the study was to provide an exemplar of how cognitive interviewing-an important and underused method for developing nursing research-can be used to design survey items and assess multilevel implementation factors. METHODS: We utilized the Consolidated Framework for Implementation Research to create a survey to assess factors that influence how oncology nurses deliver physical activity interventions. Two rounds of cognitive interviews were conducted with five purposively selected oncology nurses to assess survey items' clarity and effectiveness at eliciting desired information. We used a cognitive interviewing coding scheme to code data and revise unclear items. Participants completed the revised survey online and underwent a second interview to provide additional feedback. RESULTS: Seven important changes were made to the survey: how to assess nurses' perceptions of other nurses' beliefs and practices; language to capture data relating to nursing leadership and administration; increased detail to assess factors related to nurses' workplaces; language related to capturing factors related to policy; language to capture data related to equity, disparities, and cultural tailoring; terms replacement with language used by nurses; and strategy to capture data about nurses' knowledge of national physical activity recommendations for cancer survivors. DISCUSSION: Cognitive interviewing can be applied to develop survey items that capture real-world experiences and perspectives of practicing nurses. This is an essential step in developing nursing interventions that are ready to be implemented and increasing the uptake of evidence-based nursing care. Cognitive interviewing can be used across nursing settings, populations, and interventions to develop understandings of attitudes, attributes, characteristics, and perceptions for a variety of nursing interventions.

The silent transition from curative to palliative treatment: a qualitative study about cancer patients' perceptions of end-of-life discussions with oncologists.

OBJECTIVE: The aims of the study were to examine patients' experiences of end-of-life (EOL) discussions and to shed light on patients' perceptions of the transition from curative to palliative care. METHODS: This study was based on a qualitative methodology; we conducted semi-structured interviews with advanced cancer patients admitted to the palliative care unit (PCU) of the Medical University of Vienna. Interviews were recorded digitally and transcribed verbatim. Data were analyzed based on thematic analysis, using the MAXQDA software. RESULTS: Twelve interviews were conducted with patients living with terminal cancer who were no longer under curative treatment. The findings revealed three themes: (1) that the medical EOL conversation contributed to the transition process from curative to palliative care, (2) that patients' information preferences were ambivalent and modulated by defense mechanisms, and (3) that the realization and integration of medical EOL conversations into the individual's personal frame of reference is a process that needs effort and information from different sources coming together. CONCLUSIONS: The results of the present study offer insight into how patients experienced their transition from curative to palliative care and into how EOL discussions are only one element within the disease trajectory. Many patients struggle with their situations. Therefore, more emphasis should be put on repeated offers to have EOL conversations and on early integration of aspects of palliative care into the overall treatment.