'It's like being in a tunnel': Understanding the patient journey from tooth loss to life with removable dentures.

INTRODUCTION: The aim of this study was to conceptualise the key stages of the patient journey in the provision of a new denture and examine the factors leading to successful patient-related outcomes. METHODS: Two partially dentate patient samples were included: (i) Denture wearers - patients who had a denture fitted within the previous five years and (ii) New dentures - patients receiving treatment for a new or replacement denture. The methods involved direct targeted participant observations of the denture fitting process, debriefing interviews and a follow-up focus group exploring the patient journey. Data were analysed through the use of phenomenology and grounded theory. RESULTS: Interviews were completed with twenty participants of the denture-wearing sample (11 males and nine females, age range 22 to 86 years). Thirteen participants were included in the treatment journey sample in two primary care settings (six males and seven females, age range 55 to 101 years). Tooth loss and recovery was described as being in an 'emotional tunnel' resulting from 'bodyphonic processes' associated with tooth loss. 'Bodyphonia' subsequently became the context for 'taking control' and 'managing disclosure' when living with a removable denture. Different courses through this process can be readily observed, moderated by different variables (i.e., previous experience, working knowledge, a good fit, the treatment alliance, negotiated compromises and bounded responsibility). CONCLUSIONS: An'integrating framework' that seeks to describe the patient journey from the experience of tooth loss to recovery with a denture is proposed. This framework could be used to aid development of a clinical pathway to guide treatment options. CLINICAL SIGNIFICANCE: This paper conceptualises the patient journey. It stresses the importance of understanding the stages patients go through and highlights that for the dental team, the try-in stage is perhaps the best stage to give information about the denture and plans for continued care.

Spoken discourse in episodic autobiographical and verbal short-term memory in Chinese people with dementia: the roles of global coherence and informativeness.

Introduction: Memory and discourse production are closely related in healthy populations. A few studies in people with amnestic mild cognitive impairment and people with dementia (PWD) suggested similar links, although empirical evidence is insufficient to inform emerging intervention design and natural language processing research. Fine-grained discourse assessment is needed to understand their complex relationship in PWD. Methods: Spoken samples from 104 PWD were elicited using personal narrative and sequential picture description and assessed using Main Concept Analysis and other content-based analytic methods. Discourse and memory performance data were analyzed in bivariate correlation and linear multiple regression models to determine the relationship between discourse production and episodic autobiographical memory and verbal short-term memory (vSTM). Results: Global coherence was a significant predictor of episodic autobiographical memory, explaining over half of the variance. Both episodic autobiographical memory and vSTM were positively correlated with global coherence and informativeness, and negatively with empty speech indices. Discussion: Coherence in personal narrative may be supported by episodic autobiographical memory and vice versa, suggesting potential mechanism of interventions targeting personhood through conversation. Indices of global coherence, informativeness, and empty speech can be used as markers of memory functions in PWD.

What Do Children in India Talk About? Personal Narratives of Typically Developing Hindi-Speaking Children.

BACKGROUND: The recent development of the Global TALES Protocol provides a unique opportunity to conduct systematic cross-linguistic and cross-cultural comparisons of children's personal narratives. This protocol contains 6 scripted prompts to elicit personal narratives in school-age children about times when they experienced feeling happy/excited, worried, annoyed, proud, being in a problem situation, something important. OBJECTIVES: The objectives of this study were to examine the topics of the children's narratives when they responded to the 6 prompts and draw comparisons with the topics of narratives spoken by children from 10 other countries speaking 8 other languages as described in the original feasibility paper. METHODS: We translated the Global TALES Protocol into Hindi and collected personal narratives of thirty Hindi-speaking children (aged 6-9 years), residing in Varanasi, Uttar Pradesh, India. All personal narrative samples were elicited in person and audio recorded for manual coding of the topics. RESULTS: Although we observed many similarities in the topics of children's personal narratives between this dataset and the dataset reported on in the initial feasibility study, we also documented some novel topics, such as "welcoming guests" in response to the "excited" prompt; "financial problems" in response to the "worried" prompt; "helping someone by actions or by advising someone morally" in response to the "problem" prompt; and "mishap/personal loss" and "exams" in response to the "important" prompt. CONCLUSION: Some of these novel topics likely reflected the Indian culture. Because our study involved a group of children who are linguistically and culturally different from previous studies using the Global TALES protocol and, at ages 6-9 years, slightly younger than the 10-year-olds in prior studies, this study adds to the evidence that the Global TALES protocol can be used to elicit personal narratives of children from diverse languages and cultures, as young as age 6.

Social construction of risk and prevention practices related to Aedes mosquito-borne disease in an endemic municipality in Colombia.

INTRODUCTION: This article analyzes risk discourses around dengue, zika and chikungunya constructed by lay people, community leaders and disease control experts from the fields of medical anthropology, medical sociology, and public health. METHODS: A qualitative ethnographic study was conducted in a municipality in Colombia (December 2016 and January 2018) with semistructured and open-ended interviews, informal dialogues, and fieldwork journal observations. RESULTS: This study found a mismatch in risk discourse about vector-borne diseases among health officials, lay people, and community leaders. These discourses are linked to the sociocultural contexts in which people live, and offer particular ways of giving meaning and acting in the face of disease prevention. CONCLUSION: The findings show a multisituated risk that refers to the inside and outside of homes; and the prevention practices mentioned by different actors, in which a continuity of tensions between lay people, leaders and government officials can be observed.

Tele-Assessment of Oral Personal Narratives in Arabic- and Hebrew-Speaking Children Using the Global TALES Protocol.

INTRODUCTION: Tele-assessment (TA) has the potential to enhance access to speech therapy. This preliminary study aimed to investigate the impact of assessment mode (face-to-face [FTF] vs. TA) on the microstructure level and chosen topics of personal narratives produced by Arabic-speaking and Hebrew-speaking school-age children living in Israel. We also investigated whether performance variations, if evident, could be attributed to the children's language/culture. METHODS: Eighty-nine 10-year-old children, 38 Arabic-speaking and 51 Hebrew-speaking, living in Israel, participated in this study. Forty participants were assigned to a TA group (via Zoom) and 49 to a FTF group. All participants were assessed using the Global TALES protocol, generating six personal narratives each. The narratives were analyzed regarding the following microstructural measures: total number of words, total number of utterances (TNU), number of different words, and mean length of utterance in words (MLU-W). Additionally, each narrative was categorized into a topic according to the Global TALES protocol. RESULTS: The analysis revealed no significant main effect of assessment mode on any of the microstructure measures. However, a significant interaction effect between language/culture and assessment mode was found for TNU and MLU-W, with a significant main effect for TNU exclusively in the Arabic narratives, with the Arabic-speaking children producing more utterances through FTF compared to TA. Across language/culture groups, there was a significant effect of assessment mode on the chosen topic. Additionally, there were significantly higher scores in the Hebrew compared to the Arabic narratives in all microstructure measures, and language/culture also influenced the chosen topics. CONCLUSIONS: The results support the feasibility of TA mode for assessing personal narratives in school-aged children, using the Global TALES protocol. However, the results also suggest that TA results may be affected by the language/culture of the narrator. Finally, the findings highlight the potential influence of TA on the chosen topics of personal narratives, perhaps due to a decrease in the quality of communication in TA.

Personal Narratives of School-Age Children: A Cross-Sectional Developmental Study.

INTRODUCTION: Personal narratives are monological stories based on a personal experience that help children explain and understand their emotional states, as well as process positive and negative experiences. The aim of this study was to identify age- and emotion-related traits of lexical and grammatical abilities and coherence of personal stories produced by school-aged children between 7 and 13 years. METHODS: A total of 60 typically developing children, speakers of Croatian, were stratified into three groups according to age. Using the Global TALES protocol, each child was asked to produce six personal stories prompted by different emotional states. The personal narratives were analysed using measures of lexical diversity (lemma-token ratio and number of different words), productivity (total number of words), and syntactic complexity (mean length of utterances and clausal density). Based on the Narrative Coherence Coding Scheme, three coherence dimensions (context, chronology, and theme) were rated. RESULTS: Age group was shown to explain 18% of the variance in the ability to produce personal narratives. Personal narratives elicited through positive prompts were overall more lexically diverse but were significantly less elaborated chronologically and thematically than negative and neutral narratives. CONCLUSION: This study showed that coherence of the produced stories was connected with the child's lexicon and that both variables - lexicon and coherence - were influenced by emotional valence of the story. In contrast, grammatical aspects of the narrative were influenced only by age. Finally, it is possible to state that the Global TALES protocol is sensitive enough to capture specificities of creating personal stories, both developmental ones and those created under the influence of the emotional valence of the prompts.

Vocabulary Diversity in Personal Narratives Produced in Response to the Global TALES Protocol in Dutch-Speaking Students with and without Dyslexia.

INTRODUCTION: This study examines whether there are differences in expressive vocabulary between participants with and without dyslexia in personal narratives in response to the Global TALES protocol. METHODS: 22 monolingual Dutch-speaking participants aged 11-16 with dyslexia and 22 age and gender-matched peers without dyslexia were assessed on measures of decoding, reading comprehension, and spelling of words, pseudowords, verbs, and sentences. The participants also produced personal narratives in response to the six prompts contained in the Global TALES protocol. We analyzed the personal narratives for expressive vocabulary and counted the total number of different words (TNDW). RESULTS: The study revealed a significant relationship between TNDW and reading comprehension (r = 0.45, p = 0.002, BF10 = 17.70), spelling words (r = 0.42, p = 0.005, BF10 = 8.93), and spelling and writing conventions in sentences (r = 0.37, p = 0.016, BF10 = 3.11). The Global TALES protocol was successful in eliciting personal narratives in the Dutch-speaking participants with and without dyslexia. Participants with dyslexia used fewer different words (M = 192.27, SD = 64.37; 95% CI: [151.84-232.71]) compared to peers without dyslexia (M = 265.50, SD = 116.28; 95% CI: [225.06-305.93]; F(1, 42) = 6.68; p = 0.013; η2 = 0.14). When we compared the probability of models, Bayesian factors revealed moderate evidence for group differences in TNDW (BF = 3.94). CONCLUSION: Our findings indicate that older school-age participants with dyslexia may lag behind their peers in expressive vocabulary in a personal narrative discourse task that is relevant to everyday functioning. The results of this study highlight the relationship between expressive vocabulary and reading comprehension and the importance of the assessment of spoken language skills in children with dyslexia. Reading problems might lead to less advanced spoken language, which in turn may negatively affect the expressive vocabulary growth in individuals with dyslexia.

Evaluating the Personal Narrative Skills of Monolingual Turkish-Speaking 7- and 10-Year-Old Children with Typical Development through Global TALES: A Pilot Study.

INTRODUCTION: Studies on personal narratives are rare in Turkey and there is no standard protocol for eliciting them. The aim of this small-scale study was to translate the Global TALES Protocol into Turkish, with cultural adaptations, and to present the results regarding its usability for two different age-groups of 7- and 10-year-old school children. We investigated narrative skills in terms of verbal productivity (number of utterances, total number of words), syntactic complexity (mean length of utterance), and semantic diversity (number of different words). In addition, group comparisons were made in terms of the participants' gender and age. METHODS: A total of 20 children, 10 from each age-group (7;0-7;11 and 10;0-10;11) participated in the study. All children were monolingual Turkish-speaking children with typical development. Participants were recruited through personal and/or social networks. All personal narratives were gathered via online connections (Zoom). RESULTS: Descriptive statistics were used to describe the children's performance, and the analysis of group differences was made separately according to age and gender. All children produced narratives in response to the six protocol prompts. In addition, the number of children who did not require the scripted follow-up prompts was higher than those needing a scripted follow-up prompt to produce a response. No statistically significant group differences were found in terms of gender and age on any of the measurements. CONCLUSION: The results from this small-scale investigation showed that the translated version of the Global TALES Protocol was effective in eliciting personal narratives from Turkish-speaking children. We concluded that there is no need to change the directions or give additional guidance or prompts to the children. Future studies with larger samples are needed to confirm these findings.

Telling Personal Narratives: Comparing Stories Told by 10-Year-Old Speakers of Cypriot Greek Dialect and of Standard Modern Greek.

INTRODUCTION: Cypriot Greek is the variety of Greek language used for oral communication by the Greek Cypriot people, while Standard Modern Greek is the official language. Cypriot Greek differs from Standard Modern Greek in various aspects, including lexicon, phonetics, phonology, morphosyntax, and pragmatics. This study examines whether there are differences between children who are native speakers of the Cypriot Greek dialect and those who are native speakers of Standard Modern Greek in narrative measurements obtained in a personal narrative context. METHODS: Thirty-nine ten-year-old children (19 Cypriot Greek speakers and 20 Standard Modern Greek speakers) participated in the study. The Global TALES protocol was used to elicit personal narratives across 6 emotion-based prompts. Measures of microstructure (mean length of utterance, number of different words) and macrostructure (plot elements) are examined. RESULTS: Analysis showed no differences in macrostructure between Cypriots Greek speakers and Standard Modern Greek speakers in response to the prompts. In contrast, group differences were found in syntactic complexity, with the Standard Modern Greek speakers producing longer sentences. CONCLUSION: This is the first study to compare the characteristics of personal narratives spoken by 10-year-old children who are speakers of Cypriot Greek and Standard Modern Greek. The results from this initial comparison highlight that children who are speakers of two varieties of the same language share similar narrative elements. However, they may differ in their linguistic profiles, such as in syntax. Understanding these differences is important for researchers, educators, and speech therapists. A detailed understanding of developmental milestones and a clear understanding of each variety's characteristics are crucial from a research, pedagogical, and speech therapy perspective.

Personal Narratives of 10-Year-Old Children in Iceland: Verbal Productivity, Word Diversity, and Topics.

INTRODUCTION: The feasibility of using a standard protocol, labelled as the Global TALES, to elicit personal stories was tested across 10 different countries between 2019 and 2021. Personal narratives have not been investigated in Iceland in a similar way. The aim was to explore personal narratives of monolingual children in Iceland by using the Global TALES (2018) protocol to investigate verbal productivity, semantic diversity, and narrative topics. METHODS: Twenty-seven children (ages 9; 8-10; 9) with typical language development produced personal stories in response to six emotion-based prompts contained in the protocol. The children were interviewed by using the Zoom platform because of COVID restrictions. Children's spoken language was analysed for total number of utterances (TNU), total number of words (TNW), number of different words (NDW), mean length of utterances in words (MLUw), and proportion of words with grammatical errors. The narrative topics were coded and documented. RESULTS: The spoken language measures showed that there was a large individual variability within the group on all metrics examined. The mean TNU was 62.1 (SD 20.2) utterances, the mean for TNW was 546 (SD 219) words, the mean for NDW was 206 (SD 62) words, and the MLUw was 8.6 (SD 1.5) words in an utterance. Despite the variability in spoken language performance, around 70-75% of the participants produced TNU, TNW, NDW, and MLUw within +/- 1 SD from the mean. The topics of the stories were most frequently related to personal achievement or relationships with the family or friends. CONCLUSION: The Global TALES (2018) protocol can be used to elicit personal stories in 10-year-old children in Iceland. The results related to verbal productivity and the topics of interest were in line with previous studies around the world.

The Impact of an Expressive Writing and Storytelling Program on Ex-Offenders: A Pilot Study.

While storytelling or expressive writing has been studied in prisoners, little is known about the impact of these art interventions on ex-offenders. This study aims to evaluate a 6-week expressive writing and storytelling program in a group of nine ex-offenders who attend a peer support group. Quantitative data, including psychological recovery, well-being, hope, social support, and loneliness, was collected at baseline and post-program. Individual interviews were conducted at post-program. Results revealed a significant increase in participants' psychological recovery as measured by the Recovery Assessment Scale-revised at post-program with an effect size of 0.56. Three themes about participation in the program emerged: safe space for processing and expressing inner feelings, relating to and connecting with peers, and adjusting the way of thinking. Findings showed this program has the potential to improve ex-offenders' psychological recovery, and provide them with skills to desist from crime and be better serve as peer support workers.

Feasibility of Using the Global Tales Protocol to Elicit Personal Narratives in 10-year-Old Children in Ireland.

INTRODUCTION: This small-scale study explored the feasibility of the Global TALES protocol in eliciting personal narratives in typically developing monolingual Irish children, using the online Zoom platform. We investigated children's performance on measures of productivity (total number of utterances; total number of words) and syntactic complexity (MLU in words). We also documented the topics children talked about in response to the six emotion-based prompts contained in the Global TALES protocol. METHODS: Nineteen typically developing children (6 male, 13 female), aged between 10.0 and 10.11 years produced personal narratives in response to the Global TALES protocol. Given COVID-19 pandemic-related public health restrictions, the language samples were elicited using Zoom. All stories were transcribed and analysed using Systematic Analysis of Language Transcripts software. Qualitative content analysis was used to code the topics of the children's stories. RESULTS: Sixteen participants responded to all prompts. One participant only responded to three of the six prompts. The prompt that was least successful in eliciting a response was the "problem" prompt; 15.7% (n = 3) of the children did not provide a response to this prompt. On average, children produced 40 utterances, although individual variability was high. On average, MLU was 8.7, ranging from 6 to 11. Children's topics closely resembled those reported in the Global TALES feasibility study despite the fact, the current study took place during the COVID-19 pandemic. The most frequent topics were related to family (events, illnesses, relationships, siblings) and finding or fixing something. CONCLUSION: The Global TALES protocol was successful in eliciting personal narratives from 10-year-old Irish English-speaking children. Future larger scale studies are now needed to investigate if the results generalise to the wider Irish population with a view to create local benchmarks of personal narrative performance.

Developmental differences in reported speech and internal state language in preschoolers' personal narratives.

The present study explored developmental differences in preschoolers' use of reported speech and internal state language in personal narratives. Three-, four-, and five-year-olds attending a laboratory preschool shared 204 stories about 'a time when you were happy/sad'. Stories were audio-recorded, transcribed, and coded for reported speech (direct, indirect, narrativized) and internal state language (cognitive states, total emotion terms, unique emotion terms). Personal narratives told by five-year-olds included more cognitive states and more narrativized speech than those told by three- and four-year-olds, even when accounting for children's vocabulary skills, and that reported speech (narrativized, direct) were positively correlated with cognitive state talk. These findings highlight distinct shifts in children's use of cognitive state talk and reported speech in personal narratives told at age five. Associations between reported speech and internal state language are both informed by and support Vygotsky's (1978) fundamental claim that psychological processes are socially mediated by language.

Children's Use of Evaluative Devices in Response to the Global TALES Protocol.

INTRODUCTION: It has been well established that the function of sharing personal narratives is to inform the listener about what the event meant to the narrator, for example, by using a range of evaluative devices. The use of these evaluative devices may reflect a person's understanding of the differences between one's own mind and others, by expressing their beliefs, emotions, thoughts, and desires. This paper investigates children's use of evaluative devices when producing personal narratives in response to the six emotion-based prompts contained in the Global TALES protocol (excited, worried, annoyed, proud, problem situation, something important). It addresses three research questions: (1) What types and proportions of evaluative devices do 10-year-old English-speaking children use in response to the six prompts contained in the Global TALES protocol and are there differences in performance between boys and girls? (2) What are the correlations between the different types of evaluative devices? (3) Does children's use of evaluative devices differ depending on the type of prompt used? METHODS: Eighty-two native English-speaking ten-year-old children from three English-speaking countries (Australia, New Zealand, and the USA) participated. None of the children had been identified with language and/or learning difficulties. Children's personal narratives were transcribed and analysed for the use of 12 evaluative devices: compulsion, internal emotional states, evaluative words, intensifiers, mental states, causal explanations, hypotheses, objective judgements, subjective judgements, intent, negatives, and repetition. RESULTS: Results showed that children use a high number of evaluative devices, with "intensifiers" and "evaluative words" used most frequently. There were few effects for sex, apart from girls using a wider range of evaluative devices than boys. We found moderate to large correlations between most devices, with factor analysis revealing three factors we labelled "causality," "hypothesis," and "judgement." Although there were significant overall effects for prompt type on the use of evaluative devices, there was no clear pattern when inspecting responses to individual prompts. CONCLUSION: The results from this study shed light on children's use of evaluative devices to convey the meaning of their personal narratives in response to six different prompts tapping into different emotions. Moving beyond appraising children's structural language skills when narrating their personal experiences may enhance the understanding of interpersonal and intrapersonal aspects of theory of mind, which may inform clinical practices, such as individualized goal setting and intervention choices.

'How is our job affecting us?' Neonatal Intensive Care Unit healthcare providers and their pregnancy: A descriptive qualitative study.

AIM: The aim of this study was to understand the Neonatal Intensive Care Unit (NICU) healthcare providers' (HCPs) experiences and needs during their own past, present and desired pregnancies. It has been reported that HCPs' personal and professional lives are mutually interconnected. Given the NICU HCPs' knowledge of the risks and potential adverse outcomes of newborns admitted to the NICU, their pregnancy experience may be more challenging than that of the general population. However, to date, these aspects are still little studied. DESIGN: A qualitative descriptive study design was adopted. METHODS: Semi-structured interviews were conducted between January and April 2021 in a single third-level NICU in northeastern Italy. Transcripts were analysed using inductive content analysis. Findings are reported according to the COREQ guidelines. RESULTS: Nineteen HCPs participated in this study. Participants included 12 nurses, 6 medical doctors, and 1 paediatric physical therapist. All participants reported that their professional knowledge and experience influenced their pregnancy-related experiences, emotions and behaviours. Some participants employed adaptive coping strategies, while others were likely to experience post-traumatic stress reactions. The narratives of the men and women were similar. Three themes were identified: 'Feeling different'; 'Influence of work experience on decision-making'; 'Coping with difficulties'. CONCLUSION: To reduce the potential impact of NICU HCPs' work experience on pregnancy, family functioning and infant health, management of parental emotions should be considered for this population. IMPACT: Hospital managers could prevent the potential distress of vulnerable NICU healthcare workers during pregnancy by tailoring interventions aimed at supporting them in becoming aware and making sense of their work experiences or sensitizing individual psychological support. Moreover, university students should be offered self-help strategies to face potential dual role conflicts in their future careers. PATIENT AND PUBLIC INVOLVEMENT: No patient or public contribution.

A multi-method quasi-experimental study to assess compassion satisfaction/fatigue in nurses, midwives and allied health professionals receiving a narrative medicine intervention.

AIMS: To: (1) measure the impact of a narrative medicine intervention on compassion fatigue and compassion satisfaction of nurses, midwives and allied health professionals; (2) explore participants' working experiences and (3) their impressions of the intervention. DESIGN: Multi-methods, quasi-experimental before-after intervention design. METHODS: The intervention consisted of 20 narrative medicine sessions (60 h). Healthcare providers (N = 48) from a mother-and-child hospital in Italy completed the 'Professional quality of life' questionnaire before and after the intervention (January 2020-April 2021). Baseline scores served as internal controls. Open-ended questions explored participants' touching experiences at work and their evaluation of the intervention. A thematic content analysis was performed. Reporting followed the TREND and SRQR guidelines. RESULTS: The differences before-after intervention in compassion satisfaction or fatigue scores were not statistically significant. Three themes emerged from participants' touching experiences: "Witnessing death and sufferance"; "Witnessing violence" and "Organizational stressors during COVID-19". A statistically significantly higher median score for post-intervention compassion satisfaction was found among participants who reported at least one touching experience compared to those who had no touching experience. Four themes emerged from the reported strengths of the program: "Learning to exteriorize feelings"; "Team building"; "Useful to rework personal/professional journey" and "Develops professional empowerment". Two themes emerged from reported weaknesses: "Programme organization" and "Participants' difficulties in sharing experiences". CONCLUSION: A time-limited narrative medicine intervention is not sufficient to produce significant changes in satisfaction or compassion fatigue, especially if implemented during a pandemic. However, such an intervention holds promise for supporting nurses and midwives' professional empowerment and promoting continuity of compassionate care. IMPACT: For those at risk of compassion fatigue, policymakers need to invest in training in narrative medicine, which promotes team building, and employee well-being and thus favours compassionate care. Such programmes should be offered to undergraduate students to nurture compassion and attention to self. PATIENT OR PUBLIC CONTRIBUTION: Does not apply as the study only includes health care providers.

"Believe me, only I know how I feel." An autoethnographic account of experiences of epistemic injustice in mental health care.

In Sweden, support and service for people with disabilities is provided under the Swedish disability legislation, which has a clear focus on the individual's right to a life like that of any other citizen and on promoting equality and participation in society. Nevertheless, having a physical impairment makes it clear that equal mental health care is not provided in practice. This becomes particularly salient when there is a need for mental health in-patient care. In this article, the aim is to explore our own experiences of epistemic injustice in relation to mental health care provision in a situation where one of us has a mobility impairment that require the presence of personal assistants in everyday life. Critical personal narrative is applied to highlight the different, but intertwined experiences of a young female mental health user with a physical disability and her mother. Diary entrances, shared discussions and extracts from health care records are used to illustrate how epistemic injustice may occur in health care practices. In the analysis, we use Fricker's concepts that relate to different aspects of epistemic injustice, to show how power is exerted. Healthcare professionals' inability to value and integrate patients experience-based knowledge into practice where the lack of a holistic perspective visualizes what happens when people do not fit into predefined categories. Instead of strengthening patients' rights, health care professionals discredit patients' and family members knowledge, and thereby giving themselves epistemic privilege. People with the combined experience of both disabilities and mental health issues are vulnerable to epistemic injustice and epistemic harm since they are commonly denied both epistemic credibility and authority. Our results highlight the importance of counteracting resilient structures of social privilege and power and identifying and, in as far as possible, removing the mechanisms that exclude the epistemic resources of people with disabilities and their family members from being part of shared epistemic resources.

A Qualitative Exploration of Institutional Betrayals in Rural Communities: An Emerging Typology.

To explore individuals' personal narratives of perceived betrayals and injustices committed by institutions, their representatives, or other authority figures and discern in what spheres of life they commonly manifest. 157 adults from largely rural, low-income communities in southern Appalachia participated in semi-structured qualitative interviews that asked them to describe key points in their life experiences, including high points, low points, and turning points. These were reviewed for episodes of institutional betrayals. Interview transcripts were analyzed using a grounded thematic analysis. Participants mentioned numerous instances of betrayals that occurred from interactions with institutions or their representatives. These were grouped into four categories: professional betrayals involving mistreatment from an employer, health care provider, or other authority figure; professional-organizational betrayals where a professional perpetrator was able to get support from a problematic organizational culture; corporate malfeasance involving misdeeds by business entities; and systemic injustices involving the sociopolitical architecture of society. The findings identified a range of institutional betrayal experiences that were unnecessary, unwanted, intentional, and harmful. They could be distinguished by the type of perpetrators and often led to notable harms, including unwanted system involvement and unemployment. Although participants seldom explicitly mentioned the rural setting in their descriptions of institutional betrayal, it is likely that limited options for health care providers, schools, and other institutions exacerbated some harms. Institutional betrayals need to be considered in people's trauma dosage, their cumulative lifetime burden of trauma.

Accuracy and reconstruction in autobiographical memory: (Re)consolidating neuroscience and sociocultural developmental approaches.

Autobiographical memories are never isolated episodes; they are embedded in a network that is continually updated and prediction driven. We present autobiographical memory as a meaning-driven process that includes both veridical traces and reconstructive schemas. Our developmental approach delineates how autobiographical memory develops across childhood and throughout adulthood, and our sociocultural approach examines the ways in which autobiographical memories are shaped by everyday social interactions embedded within cultural worldviews. These approaches are enhanced by a focus on autobiographical memory functions, namely self-coherence, social embeddedness, and directing future behaviors. Neuroscience models of memory outlined in multiple trace and trace transformation theories and perceptual principles of predictive processing establish mechanisms and frameworks into which autobiographical memory processes are incorporated. Rather than conceptualizing autobiographical and episodic memories as accurate versus error-prone, we frame memory as a dynamic process that is continuously updated to create coherent meaning for individuals living in complex sociocultural worlds. Autobiographical memory is a process of both accuracy and error, an intricate weaving of specific episodic details, inferences and confusions among similar experiences; it incorporates post-event information through reminiscing and conversations, in the service of creating more meaningful coherent memories that define self, others, and the world. This article is categorized under: Psychology > Memory.

'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.

AIMS AND OBJECTIVES: To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. BACKGROUND: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. DESIGN: An inductive qualitative inquiry. METHODS: In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. RESULTS: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. CONCLUSION: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. RELEVANCE TO CLINICAL PRACTICE: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. PARTICIPANT CONTRIBUTION: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.