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1.
BMC Med Educ ; 24(1): 224, 2024 Mar 03.
Artículo en Inglés | MEDLINE | ID: mdl-38433220

RESUMEN

BACKGROUND: Little is known about what happens when patients and caregivers are involved in an academic setting as co-teachers and how healthcare professionals approach a new model of partnership-based teaching. This study aimed to explore the learning and behavioural patterns of a group of healthcare professionals who were learning to teach with patients and caregivers as co-teachers in a post-graduate course. METHODS: A focused ethnographic study involving 11 health professionals was conducted. Data were collected through participatory observation during the course, individual semi-structured interviews, and a follow-up focus group. Taxonomic analysis was performed. RESULTS: Three categories were identified: 'group', 'role of narration' and 'applying co-teaching with patients and caregivers '. Specifically, heterogeneity, absence of hierarchies, and balanced relationships characterised the group dynamic and promoted partnership. Narration played a key role both in learning and in healthcare professionals' relationship with patients and caregivers and promoted emotional skills and self-awareness. Project planning and lessons simulations were essential aspects of the implementation process. CONCLUSIONS: This focused ethnography helped further understanding of the context of a specific project involving patients and caregivers as co-teachers in healthcare professional education. The development of emotional skills and self-awareness are the main learning patterns of co-teaching, and interprofessionalism and balanced relationships are the basis of the behavioural patterns. These patterns facilitated the involvement of patients and caregivers in health education.


Asunto(s)
Cuidadores , Personal Docente , Humanos , Aprendizaje , Educación en Salud , Antropología Cultural
2.
J Cancer Educ ; 39(2): 160-167, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38044415

RESUMEN

Digital storytelling (DST) interventions may be one way to address disparities in cancer screening experienced by the Hispanic/Latino population. Digital stories are short, first-person narratives that include voice-over narration and images. With storytellers' permission, researchers can screen digital stories as a health intervention. Digital stories can inspire viewers to adopt or change their behavior, such as completing cancer screening. Rochester Healthy Community Partnership (a 20-year community-based participatory research partnership) together with eight Hispanic/Latino, Spanish speaking cancer survivors, co-survivors, or recently screened individuals, developed digital stories about breast, cervical, and colorectal cancer screening. Here, we describe our qualitative evaluation of the DST workshop. To understand what the storytellers thought viewers would find relatable in their digital stories, we applied Narrative Theory. We also assessed workshop successes and opportunities for improvement. We used the constant comparative method for data analysis. We learned that the storytellers anticipated their stories would be engaging and that viewers would connect with Hispanic/Latino cultural values. During the workshop, the storytellers felt like they were making an important contribution. The storytellers highlighted specific opportunities for improvement including sharing the stories more quickly after the workshop. Future research is needed to test whether this intervention follows the Narrative Theory causal pathway by persuading viewers to complete recommended cancer screenings.


Asunto(s)
Neoplasias de la Mama , Neoplasias Colorrectales , Detección Precoz del Cáncer , Neoplasias del Cuello Uterino , Humanos , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Comunicación , Hispánicos o Latinos , Narración , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/prevención & control , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/prevención & control
3.
Artículo en Inglés | MEDLINE | ID: mdl-38951015

RESUMEN

ISSUE ADDRESSED: Health-related information can often be overwhelming for consumers, frequently infused with complex medical terminology that is difficult to understand and apply. Historically empathic connection, art and narratives have played key roles in communicating with diverse populations however collectively have received little recognition as a modality to improve health literacy. This study aimed to investigate the empathetic connection between art and patient narratives with a view to improve health literacy in the wider community. METHODS: Nine recently discharged patients and one carer from a regional hospital were paired with 10 tertiary visual arts students for interview. Each narrative was transformed into visual art and exhibited at a community art gallery. The Empathy Quotient (EQ), Medical Outcomes Study 36-item Short Form Health Survey (SF-36) and self-completed questionnaires assessed empathy and functional well-being. Health literacy was evaluated through community response surveys post-exhibition exposure. RESULTS: Student artist participants' EQ Cognitive Empathy (EQ-CE) scores were associated with 'Emotional Reactivity' (EQ-ER) (p = .038). SF-36 scores revealed that role limitations due to physical health and emotional problems had the greatest impact on patient/carer participant's life at the time. The SF-36 General Health domain was associated with the EQ-ER total score (p = .044). Exhibition surveys revealed that 96.9% of observers had learnt something new about illness or injury. SO WHAT?: Although a relatively small study, our findings suggest patient/carer narratives and visual art is a simple yet effective modality for health service organisations to facilitate affective learning and improve health literacy when engaging with consumers.

4.
Clin Linguist Phon ; : 1-17, 2024 Jan 25.
Artículo en Inglés | MEDLINE | ID: mdl-38272017

RESUMEN

Stuttering is characterised by disruptions in speech fluency that normally emerges between the ages of 2 to 5 when children start to formulate sentences. Current stuttering identification in children is largely based on speech disfluency criteria (>3% stuttering-like disfluencies, SLDs) developed for monolingual English-speaking children. Research in a Western language context shows that application of the criteria for monolingual to bilingual children may result in false positive diagnosis of stuttering. The applicability of these criteria to children speaking languages typologically distinct from English remains unclear. This preliminary study focused on bilingual Cantonese-English-speaking children, aiming to explore the manifestations of the speech disfluencies in Cantonese (a syllable-timed language) and English (a stress-timed language) while accounting for language dominance/proficiency and speaking task. Nineteen typically fluent Cantonese-English bilingual preschoolers were recruited for this study and their speech samples were collected across different speaking tasks (i.e. conversation and narration), and languages (i.e. Cantonese and English). The types and frequency of speech disfluencies were compared across both languages and the speaking tasks. The results showed that between 21-68% of children showed higher than 3% SLDs across different languages and speaking tasks. Linear mixed-effect analysis revealed that the prevalence of SLDs is higher in English (less dominant language) than Cantonese (more dominant language), and the prevalence is also higher in narration than conversation. These findings suggest the need for tailored stuttering identification criteria for bilingual children speaking diverse languages and emphasise the importance of considering language dominance/proficiency and speaking task when assessing stuttering in bilingual populations.

5.
Am J Med Genet A ; 191(4): 1020-1025, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36607994

RESUMEN

The diagnosis of rare Mendelian disorders usually relies upon the interpretation of prose and is complicated by a lack of objective, reproducible phenotypic data. To address this limitation, we developed a next generation phenotyping workflow to phenotypically characterize developmental delay with gastrointestinal, cardiovascular, genitourinary, and skeletal abnormalities (DEGCAGS). We identified 15 people affected with DEGCAGS, including one novel patient identified at our hospital and 14 patients previously reported in the literature. Human Phenotype Ontology (HPO) terms were extracted from the patient chart and literature review. The HPO terms were sorted by count according to HPO hierarchy of terms. Phenotypes that cosegregate were identified utilizing a co-occurrence matrix. A quantitative narrative illustrated by violin plots was created for our patient from phenotypic data per each day of hospital admission. A total of 252 unique HPO terms were extracted from the patient record and literature review. The highest count of systemically sorted and unsorted terms and the most commonly co-occurring terms were described. A violin plot of phenotype occurrences demonstrated a progression of phenotypes over time. NGP offers a quantitative approach to phenotyping to generate phenotypic data in an objective and reproducible manner akin to NGS.


Asunto(s)
Registros Electrónicos de Salud , Narración , Humanos , Fenotipo , Enfermedades Raras
6.
J Pers ; 91(5): 1207-1222, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-36415918

RESUMEN

OBJECTIVE: Repeated autobiographical narratives have recently received increased attention as measures of the stability of narrative identity. We propose that one way to map change in life narratives is to rate the degree to which the autobiographical meaning of renarrated events changes. We aimed to test the influence of age, traits (openness, extraversion), and event characteristics on how much autobiographical meaning changes. METHOD: In waves 3 and 4 of the MainLife study, 123 participants (15-72 years) narrated their lives twice, 4 years apart. Life events that were told both times were rated for change in autobiographical meaning (n = 531). Multilevel models tested individual and event characteristics as predictors. RESULTS: Autobiographical meaning changed more the more individuals were open to experience, the more recently the events had happened, and the more negative emotions the event narratives contained. It was unrelated to extraversion and to the use of autobiographical arguments. A decrease in change with age was due to older individuals narrating older events. CONCLUSION: Our findings add to understanding how traits and life story are related and underscore the need to further study the role of event characteristics for stability and change in narrative identity.


Asunto(s)
Individualidad , Memoria Episódica , Humanos , Personalidad , Narración , Trastornos de la Personalidad , Acontecimientos que Cambian la Vida
7.
J Adv Nurs ; 79(8): 3035-3046, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-36785928

RESUMEN

AIM: The aim of this study was to describe how nurses' dialogue compares with that of doctors in the Australian reality television program Emergency and to explain how this dialogue and the use of narration and direct-to-camera monologues contribute to the portrayal of nurses. The final aim was to outline how these findings can inform the actions of nurses, nursing organizations and writers and journalists. DESIGN: A descriptive study conducted in 2021 and 2022. METHODS: Character network analysis was used to describe the verbal interaction of nurses and doctors and identify major, minor and background characters. Narration and direct-to-camera monologues were analysed through frequency counts. Cultivation theory was used to interpret the results. RESULTS: Fifty-four characters were identified, with 19 of these being nurses. Doctors spoke 87.9% of the dialogue. Most of the dialogue (43%) was monologue by doctors directly to the camera. All major characters were doctors, and only one nurse was a minor character. The mean number of mentions by the narrator of a nurse per episode was 4, and 30 for a doctor. CONCLUSION: The portrayal of nurses in Emergency is inaccurate and the production methods are used to privilege the role of doctors. This finding comes after decades of research showing inaccurate images of nursing in television. Drawing on recent Australian inquiries and the challenges experienced by mental health and aged care nursing, several approaches for collaborative action to improve these images are suggested. IMPACT: This is the first study of the portrayal of nursing in reality television. These results suggest that much effort is still required even in contemporary reality television to accurately reflect the work and contribution of nurses. It is the shared responsibility of individual nurses, nursing organizations and writers and journalists to accurately portray nurses in the media. NO PATIENT OR PUBLIC CONTRIBUTION: This network analysis of a postproduction television program did not allow patient or public involvement in the design or analysis.


Asunto(s)
Comunicación , Enfermeras y Enfermeros , Humanos , Anciano , Australia , Televisión
8.
J Clin Nurs ; 32(13-14): 3954-3966, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36734355

RESUMEN

AIMS AND OBJECTIVES: To explore healthcare professionals' experiences and reflections about narration in their everyday work. BACKGROUND: The need for integrated and people-centred healthcare for older adults has highlighted the relevance of narration in healthcare practice. Although theoretical foundations vary, different frameworks building on narration have been proposed for translating person-centredness philosophies into practice. However, to understand how theoretical knowledge on narration can be adopted into clinical work, we need to learn how healthcare staff understand narration from their experiential knowledge and practice. DESIGN: The research process followed guidelines from Constructivist Grounded Theory as described by Charmaz. The study adheres to the COREQ guidelines. METHODS: Data collection entailed interprofessional focus groups discussions with healthcare staff (n = 31). Vignettes depicting realistic scenarios were used to encourage participants to reflect on clinical practice. Data were analysed via a constant comparative method. RESULTS: One core theme arose from the analysis. The core theme showed how narration was a relational process that people engaged in to pursue and uphold several foundational qualities in healthcare practice presented in the following subthemes: preventing simplistic understandings of people and situations; supporting trustful relations; supporting continuity and coherence; and learning from coworkers. However, a minor theme raised awareness of narrative relations as a double-edged sword. CONCLUSIONS: By acknowledging the mutual and multifacetted nature of narration in everyday practice, this study shows how healthcare professionals' engagement in narrative relations may contribute to upholding several foundational qualities which resonate with philosophies of person-centredness in everyday healthcare practice. RELEVANCE TO CLINICAL PRACTICE: Recognition of both the advantages and possible risks embedded in narrative relations in healthcare practice emphasises the obligation to collectively reflect on the repercussions of narrative relations in any local context. PATIENT OR PUBLIC CONTRIBUTION: Healthcare professionals contributed by sharing their experiential knowledge and reflections on narration in practice.


Asunto(s)
Personal de Salud , Relaciones Interprofesionales , Atención Dirigida al Paciente , Relaciones Profesional-Paciente , Investigación Cualitativa , Grupos Focales , Terapia Narrativa , Servicios de Salud para Ancianos , Humanos , Anciano de 80 o más Años
9.
Scand J Caring Sci ; 37(3): 777-787, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-36918749

RESUMEN

BACKGROUND: The dominant story of HIV in Denmark portrays HIV as compatible with a nearly normal life. International research on the experiences of elderly people diagnosed with human immunodeficiency virus (HIV) in the 1980s to mid-1990s challenges this narrative. AIMS: To gain knowledge on the experiences of elderly long-term survivors of HIV in Denmark and to evaluate if a narrative intervention 'giving voice' to this specific group was experienced as improving their quality of life. METHODS: In collaboration with relevant stakeholders, we developed a narrative intervention at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care focusing on the experiences and stories of people having lived a long life with HIV. Nineteen women and men living with HIV were included in the study. The intervention's evaluation design was based on ethnographic fieldwork that included participant observation and focus group interviews. The qualitative data were analysed using thematic content analysis. RESULTS: The findings show that the dominant story on HIV does not adequately cover the experiences of elderly Danes who have lived a long life with HIV. The participants continue to suffer from late complications and physical, existential, emotional and social challenges. The narrative intervention helped improve how participants experienced their quality of life. CONCLUSION: Long-term elderly Danish survivors diagnosed with HIV in the 1980s to mid-1990s suffer from complex symptoms and problems related to living their lives with HIV and treatment. They found that telling and sharing their life stories with other people with HIV gave them a sense of coherence, meaning and direction in life. RELEVANCE: The study documents the experiences of a group of long-term survivors of HIV in Denmark, making it relevant for organisations supporting people with HIV and for health care professionals working with this group. Furthermore, the study adds to the knowledge base on the use of narrative methods in rehabilitation.


Asunto(s)
Infecciones por VIH , VIH , Masculino , Humanos , Femenino , Anciano , Calidad de Vida/psicología , Narración , Investigación Cualitativa , Infecciones por VIH/psicología
10.
Med J Islam Repub Iran ; 37: 119, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38145182

RESUMEN

Background: Studies examining narrative production skills in children with autism spectrum disorder (ASD) have demonstrated variable and inconsistent results. This study aimed to investigate to what extent narrative difficulties in children with ASD reflect difficulties with language. Methods: Accordingly, the spoken narrative skills of 16 children with ASD were compared with those of their 16 chronological age-matched (CAM) and 16 language-matched (LM) peers. A Kruskal-Wallis non-parametric test was then used to examine the differences between groups in regard to NTC, NSG and SI variables .For other studied variables (NTW, number of T-units, ATL and total score), one-way analysis of variances (ANOVA) was also used. Results: At the level of microstructure, the results showed that productivity (number of total words, total clauses, and T-unites) and syntactic complexity (average of T-unit length and subordination index) were predominantly similar in ASD and LM children. However, children with ASD scored lower than their CAM counterparts (P < 0.001). At the macrostructure level, we found that the total score of story grammar elements and the number of story grammars in the narrative production of children with ASD were lower than those in both CAM and LM children (P < 0.001). Conclusion: The present study, thus, showed that creating a coherent narrative could be more demanding for children with ASD than productivity and syntactic complexity.

11.
Health Expect ; 25(2): 567-578, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34953006

RESUMEN

BACKGROUND: Hospital report cards (HRCs) are usually presented in a textual and factual format, likely hampering information processing. OBJECTIVE: This study aimed to investigate the effects of audiovisual and narrative information in HRCs on user responses, and to test differences between older and younger women. DESIGN: A 2 (modality [textual vs. audiovisual]) × 3 (narration style [factual vs. process narrative vs. experience narrative]) online experiment was conducted. Information about breast cancer care was used as a case example. Age (younger [<65] vs. older [≥65]) was included as a potential effect modifier. SETTING AND PARTICIPANTS: A total of 631 disease-naïve women (Mage = 56.06) completed an online survey. The outcomes were perceived cognitive load, satisfaction, comprehension, information recall and decisional conflict. Data were analysed using AN(C)OVAs. RESULTS: Audiovisual (vs. textual) information resulted in higher information satisfaction across age groups, but was associated with lower comprehension in older women. An experience narrative (vs. factual information) increased satisfaction with attractiveness and emotional support of the information only in older women. A three-way interaction effect was found, suggesting that older women were most satisfied with the comprehensibility of audiovisual factual or textual process narrative information. Younger women were most satisfied with the comprehensibility of audiovisual process narrative or textual factual information. DISCUSSION AND CONCLUSION: Audiovisual and narrative information in an HRC showed beneficial effects on satisfaction measures. In particular, audiovisual information could be incorporated into HRCs to increase satisfaction with information. PUBLIC CONTRIBUTION: Lay persons helped in optimizing the visuals used in the stimulus materials by checking for clarity.


Asunto(s)
Recuerdo Mental , Narración , Anciano , Comprensión , Femenino , Hospitales , Humanos , Persona de Mediana Edad , Encuestas y Cuestionarios
12.
Cancer ; 127(14): 2535-2544, 2021 07 15.
Artículo en Inglés | MEDLINE | ID: mdl-33794036

RESUMEN

BACKGROUND: African American women with hereditary breast cancer risk are less likely to undergo genetic counseling and testing compared with non-Hispanic White women. Inequities in the use of precision cancer care are likely to exacerbate racial disparities in cancer outcomes. A culturally sensitive multimedia narrative intervention was developed to motivate African American women at risk for hereditary breast cancer to engage in genetic counseling. METHODS: Development of the intervention was grounded in the Integrative Model of Behavioral Prediction using a phenomenological, deductive approach and employed multiple qualitative methods for data collection, including 1-on-1 interviews and story circles with members of the target audience to identify salient themes and lived experiences. Focus group testing was then conducted with members of the group of focus, primary care providers, and community stakeholders. RESULTS: Six themes that mapped to the theoretical model were identified. Lived experiences were abstracted from story circle data to create a narrative storyline. Educational content and motivational messaging derived from the 6 themes were embedded into the script. Focus group testing with stakeholder groups was used to refine the intervention. Testing of the final multimedia narrative with focus groups indicated that the intervention was culturally sensitive and authentic, and the messaging was effective. CONCLUSIONS: Multiple qualitative data collection methods and a robust theoretical framework of health behavior were key elements for this study to develop a culturally sensitive, narrative intervention that reflects lived experiences and motivates underserved African American women with hereditary breast cancer risk to engage in genetic counseling. This strategy can be applied to mitigate racial inequities in the use of other genomic approaches for personalizing cancer care.


Asunto(s)
Negro o Afroamericano , Neoplasias de la Mama , Negro o Afroamericano/psicología , Neoplasias de la Mama/genética , Neoplasias de la Mama/prevención & control , Neoplasias de la Mama/psicología , Femenino , Grupos Focales , Asesoramiento Genético , Humanos
13.
Ann Fam Med ; 19(3): 271-273, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34180848

RESUMEN

In this essay, a medical student details how she struggled to let go of a patient with whom she connected throughout the patient's pregnancy during her second year of medical school. Although she learned in her preclinical "doctoring" courses how to build quick connections with patients, such training did not delve into how to manage meaningful, emotionally complex connections that may form with patients during longitudinal rotations or, as in this case, extracurricular activities. While primary care physicians may have decades of practice managing evolving longitudinal relationships, medical students who form strong connections with patients are just learning what it means to navigate those relationships, some of which come to an end. Reflecting on the end of this particular relationship helped the author appreciate the power of the longitudinal physician-patient relationship and taught her that taking care of patients also requires taking care of one's self.


Asunto(s)
Médicos , Estudiantes de Medicina , Curriculum , Empatía , Femenino , Humanos , Narración , Relaciones Médico-Paciente , Embarazo
14.
BMC Neurol ; 21(1): 3, 2021 Jan 04.
Artículo en Inglés | MEDLINE | ID: mdl-33397316

RESUMEN

BACKGROUND: Stroke in adults aged between 18 and 64 years old is increasing significantly worldwide. Studies have reported that this group of young stroke survivors encounters enormous difficulties reintegrating into their social roles. Individualised discussions with healthcare professionals and learning from other survivors are imperative for them to reconstruct their identities after stroke. There is also great demand for community support during their chronic stage of recovery to help them rebuild life skills to promote reintegration. METHODS/DESIGN: This is a randomised controlled trial to investigate the effects of a 24-week Narrative and Skills-building Intervention (NSI) on young stroke survivors' community reintegration and psychosocial outcomes. A total of 208 adults aged 18-64 years old with a first-ever or recurrent ischaemic or haemorrhagic stroke and have been discharged home will be recruited and randomly assigned to receive usual care or usual care with NSI. The NSI is grounded in Narrative Theory and Bandura's principles of Self-efficacy and Outcome Expectation, consisting of successive eight individual sessions over six months delivered by a trained facilitator (a registered nurse). Participants will be facilitated to narrate their survival experiences and rebuild core life skills. Videos of peer young stroke survivors' experiences of recovery will be provided. Outcomes including community reintegration, depressive symptoms, health-related quality of life, self-efficacy, outcome expectation and satisfaction with performance of self-management behaviours will be measured before (T0) and immediately after NSI (T1), then six (T2) and 12 months after NSI (T3). Generalised estimating equations models will be used to compare the differential changes in outcomes across time between the two groups. Focus group interviews will be conducted with the facilitator at T1 and with the participants in the intervention group at T1 and T3. DISCUSSION: This study will evaluate the short and long-term effects of a theory-based NSI on young stroke survivors' community reintegration and establish a new model of community reintegration after stroke to inform future research. The results will also provide valuable evidence to develop clinical guidelines for young stroke survivors' community reintegration. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04560140 , registered on 23 September, 2020.


Asunto(s)
Terapia Narrativa/métodos , Rehabilitación de Accidente Cerebrovascular/métodos , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ensayos Clínicos Controlados Aleatorios como Asunto , Adulto Joven
15.
J Pediatr Nurs ; 59: e93-e105, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33622642

RESUMEN

PROBLEM: Health diaries with both clinical and narrative elements have been widely used in pediatrics to study children's and families' experiences of illness and coping strategies. The objective of this study is to obtain a synthesis of the literature about narrative health diaries using the PRISMA extension for scoping reviews. ELIGIBILITY CRITERIA: Sources were limited to: English language; narrative diaries; children/adolescents and/or parents/caregivers. SAMPLE: The following databases were searched: PubMed, Embase and CINAHL with no time limits. RESULTS: Among 36 articles included the most common context where a diary was implemented was the home (61%), the hospital (17%) and the school (14%). The most common diarist is the child or adolescent (50%). Paper diary was the most common type (53%), followed by the video diary (19%), the e-diary (8%) or the audio diary (8%). None of the studies explored the impact of the use of diaries on patient outcomes. CONCLUSIONS: The narrative health diary is used to report patient experiences of illness or common life from the point of view of the child, adolescent or other family members. The diversity of the diaries found shows how the narrative diary may be 'adapted' to different settings and pediatric populations. IMPLICATIONS: The narrative diary is a relevant tool for the exploration of children's and adolescents' experiences of illness and common life. Studies are still needed to describe the impact of narrative diaries keeping on children's health outcomes.


Asunto(s)
Familia , Pediatría , Adaptación Psicológica , Adolescente , Cuidadores , Niño , Humanos , Narración
16.
Can Oncol Nurs J ; 31(1): 83-91, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-38919459

RESUMEN

Background: Fear of cancer recurrence (FCR) is a common concern for posttreatment cancer survivors. In this secondary analysis we explore cancer survivors' unsolicited narratives on a survey about FCR. Methods: We used an interpretive descriptive approach and statistical analyses to explore these narratives and determine the characteristics of survivors who did and did not provide narratives. Findings: We developed three themes based on our analysis: describe posttreatment experiences; elaborate or contextualize FCR responses and use their voice toward change in cancer care. Those who provided narratives had lower overall FCR. Most narratives were used to provide context to responses or to indicate that some survey items were irrelevant. Conclusion: Our results highlight potential reasons for unsolicited narratives on a survey and illuminate the potential value of expressive interventions for cancer survivors. Results indicate the usefulness of mixed methods approaches where survey respondents are offered space to provide open text.

17.
Prax Kinderpsychol Kinderpsychiatr ; 70(7): 613-625, 2021 Nov.
Artículo en Alemán | MEDLINE | ID: mdl-34734549

RESUMEN

Projective methods have lost significance in child and adolescent psychiatric diagnostics. These methods allow access to important emotional and conflictual topics that can only be determined to a limited extent via diagnostic discussions and questionnaires. The Thematic Apperception Test (TAT-A) has been updated for use in adolescents. For this purpose, special image templates with new motifs were developed, which were redrawn photorealistically in color to increase ambiguity and stimulate imagination. To check the thematic valences, the panels were presented to 184 schoolgirls in Seoul, South Korea, for assessment. The practical suitability and acceptance of the image templates were evaluated on a small clinical German sample (N = 13), and the valences in terms of content were determined by two raters. The results clarify that photorealistic color representation is an appropriate method for this new concept of TAT. In particular, "empty" panels with landscape views initiate meaningful narratives, thereby enabling access to personal topics.


Asunto(s)
Trastornos Mentales , Técnicas Proyectivas , Adolescente , Niño , Emociones , Humanos , Narración , Prueba de Apercepción Temática
18.
Conscious Cogn ; 86: 103031, 2020 11.
Artículo en Inglés | MEDLINE | ID: mdl-33099083

RESUMEN

Recently, a three-dimensional construct model for complex experiential Selfhood has been proposed (Fingelkurts, Fingelkurts, & Kallio-Tamminen, 2016b,c). According to this model, three specific subnets (or modules) of the brain self-referential network (SRN) are responsible for the manifestation of three aspects/features of the subjective sense of Selfhood. Follow up multiple studies established a tight relation between alterations in the functional integrity of the triad of SRN modules and related to them three aspects/features of the sense of self; however, the causality of this relation is yet to be shown. In this article we approached the question of causality by exploring functional integrity within the three SRN modules that are thought to underlie the three phenomenal components of Selfhood while these components were manipulated mentally by experienced meditators in a controlled and independent manner. Participants were requested, in a block-randomised manner, to mentally induce states representing either increased (up-regulation) or decreased (down-regulation) sense of (a) witnessing agency ("Self"), or (b) body representational-emotional agency ("Me"), or (c) reflective/narrative agency ("I"), while their brain activity was recorded by an electroencephalogram (EEG). This EEG-data was complemented by first-person phenomenological reports and standardised questionnaires which focused on subjective contents of three aspects of Selfhood. The results of the study strengthen the case for a direct causative relationship between three phenomenological aspects of Selfhood and related to them three modules of the brain SRN. Furthermore, the putative integrative model of the dynamic interrelations among three modules of the SRN has been proposed.


Asunto(s)
Encéfalo , Electroencefalografía , Imagen Corporal , Mapeo Encefálico , Humanos
19.
J Med Internet Res ; 22(3): e17994, 2020 03 31.
Artículo en Inglés | MEDLINE | ID: mdl-32229466

RESUMEN

BACKGROUND: Active video games (AVGs) can increase physical activity (PA) and help produce higher physiological expenditure. Animated narrative videos (NVs) possess unique immersive and motivational properties. When added to AVGs, they have been found to increase moderate-to-vigorous physical activity (MVPA) as opposed to the original no video condition. However, there is no evidence of whether that was due to the NV or the addition of an animated video to an AVG. OBJECTIVE: This study aimed to investigate the differential effect of adding an NV versus a nonnarrative video (NNV) to an AVG on PA parameters and physiological responses and to explore the mediating role of immersion. METHODS: A total of 22 children aged 8 to 12 years were randomly assigned to the NV or NNV condition. They were instructed to play an AVG (on Xbox Kinect) for as long as they wanted. We used accelerometers to estimate the time spent (in minutes) in MVPA. Heart rate (HR) and rate of perceived exertion (RPE) were measured before, during, and after the AVG play session. The participants then reported their experience of narrative immersion via a questionnaire. RESULTS: The NV group had significantly higher narrative immersion (mean 3.50, SD 0.55 vs mean 2.91, SD 0.59; P=.03) and MVPA (mean 19.46, SD 13.31 vs mean 7.85, SD 5.83; P=.02) than the NNV group. Narrative immersion was positively correlated with MVPA (r=0.52; P=.01) and average HR during AVG (r=0.43; P=.05). Mediation analysis indicated that narrative immersion mediated the effect of NV (NV vs NNV) on MVPA (direct effect: beta=7.51; P=.01). The indirect effect was that NV was positively correlated with the mediator variable narrative immersion (beta=.59; P=.03), which was itself marginally associated with MVPA (beta=6.95; P=.09); when narrative immersion was included in the model, the regression coefficient was attenuated. CONCLUSIONS: AVG with added narratives elicits more narrative immersion, resulting in more minutes in MVPA. Narrative immersion served as a mediator between NV and MVPA via its elicitation of an elevated HR without increasing RPE. The inclusion of immersive narratives in AVG could be helpful for inducing MVPA, to enhance AVG engagement without additional exertion.

20.
J Clin Nurs ; 29(13-14): 2293-2305, 2020 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-32160346

RESUMEN

AIM AND OBJECTIVE: To explore how working-age adults experience patient participation in hospital haemodialysis. BACKGROUND: End-stage kidney disease is a progressive, chronic condition imposing patients with high treatment burdens and low health-related quality of life. Patients face multiple medical decisions related to living with kidney failure. Given their frequent interaction with health services, patient participation may be of special value. DESIGN: Qualitative design with a narrative approach. METHODS: In 2018, eleven patients aged 35-64 years undergoing hospital haemodialysis participated in individual interviews. All interviews were analysed using a narrative approach. Reporting followed the Consolidated criteria for Reporting Qualitative Research guidelines. FINDINGS: The patients' narratives of participation comprised three themes following their healthcare trajectory: Informed, but not involved in treatment choices; Duality of care and control; and Frail trust reflecting collaborative deficiencies. The patients received good information about dialysis, but were not involved in choice of treatment modality. Professional work, as well as the nature of treatment, contributed to restricted patient autonomy. Patients' trust suffered from collaborative deficiency generating delays in their treatment trajectories, and patients extended their responsibility into the coordination of transitions as a way of coping with these issues. CONCLUSIONS: The study identified challenges related to patient involvement and interdisciplinary collaboration. Involving patients through dialogue and acknowledging their experiences, preferences and lifestyles may strengthen the mutual patient-professional understanding of treatment. Despite increased focus on seamless trajectories, patients face obstacles regarding interdisciplinary collaboration and coordination of health services. RELEVANCE TO CLINICAL PRACTICE: The findings indicate a want of individually customised care for people requiring dialysis. Patients need to be involved in the choice of treatment modality as well as decisions related to the current treatment. Information must include potential consequences of the different treatment modalities. Health services need to strengthen collaboration in order to secure treatment continuity and patient involvement.


Asunto(s)
Participación del Paciente , Calidad de Vida , Diálisis Renal/psicología , Adaptación Psicológica , Adulto , Toma de Decisiones , Femenino , Humanos , Fallo Renal Crónico/terapia , Masculino , Persona de Mediana Edad , Prioridad del Paciente , Investigación Cualitativa , Diálisis Renal/enfermería
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