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INTRODUCTION: Advance care planning (ACP) aims to create conditions for more person-centred care. We aimed to explore variations in person-centred care discussions and treatment-centred care discussions within ACP conversations in the Multidisciplinary Timely Undertaken Advance Care Planning (MUTUAL) intervention and how person-centred care discussions could be encouraged. The MUTUAL intervention consists of the following: (i) timely patient selection, (ii) the patient and healthcare professionals preparing for the conversation, (iii) a scripted ACP conversation in a multidisciplinary setting and (iv) documentation. METHODS: We conducted a narrative analysis of ACP conversations. A narrative summary template was created and used to analyse 18 audio-recordings. RESULTS: We noticed variations in person-centred and treatment-centred focus within the ACP conversations. We identified three important strategies that facilitated person-centred care discussions within ACP conversations. First, healthcare professionals' acceptance that ACP is an individual process. We believe it is important that healthcare professionals recognise and accept where the patient is in his or her individual ACP process; not making decisions right away can also be part of a decisional process. Secondly, exploring the underlying motivation for treatment wishes can give insights into patient's wishes, values and needs. Lastly, healthcare professionals who demonstrated an adaptive, curious and engaged attitude throughout the ACP process achieved more person-centred ACP conversations. This coincided with elaborating on the patient's emotions, fears and worries. CONCLUSION: Person-centred and treatment-centred focus varied within the ACP conversations in the MUTUAL intervention. Certain strategies by healthcare professionals facilitated a more person-centred focus.
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Planificación Anticipada de Atención , Masculino , Femenino , Humanos , Personal de Salud , Toma de Decisiones , Emociones , ComunicaciónRESUMEN
Medical students' efforts to learn person-centered thinking and behavior can fall short due to the dissonance between person-centered clinical ideals and the prevailing epistemological stereotypes of medicine, where physicians' life events, relations, and emotions seem irrelevant to their professional competence. This paper explores how reflecting on personal life experiences and considering the relevance for one's future professional practice can inform first-year medical students' initial explorations of professional identities. In this narrative inquiry, we undertook a dialogical narrative analysis of 68 essays in which first-year medical students reflected on how personal experiences from before medical school may influence them as future doctors. Students wrote the texts at the end of a 6-month course involving 20 patient encounters, introduction to person-centered theory, peer group discussions, and reflective writing. The analysis targeted medical students' processes of interweaving and delineating personal and professional identities. The analysis yielded four categories. (1) How medical students told their stories of illness, suffering, and relational struggles in an interplay with context that provided them with new perspectives on their own experiences. Students formed identities with a person-centered orientation to medical work by: (2) recognizing and identifying with patients' vulnerability, (3) experiencing the healing function of sharing stories, and (4) transforming personal experiences into professional strength. Innovative approaches to medical education that encourage and support medical students to revisit, reflect on, and reinterpret their emotionally charged life experiences have the potential to shape professional identities in ways that support person-centered orientations to medical work.
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In Chinese culture, there is a widely circulated phrase, 'A hen crows in the morning'. This phrase is used to humiliate women who steal power and engage in the political field. It demonstrates the complicated relationship between women and power in the context of Chinese culture. Women are not completely excluded from the politics, but women in power are often stigmatised. This study explores the life of Empress Dowager Cixi (1835-1908), the last female dominator in Chinese history, takes psychobiography as the research method, and attempts to understand the complicated relationship between women and power in Chinese culture through analysing Cixi's life from the perspective of complex and cultural complex theory which originated with C.G. Jung and analytical theory. The research findings show that humiliating and suppressing women with political talent can trigger their complexes, both personal and cultural. This study attempts to propose the femininity castrated complex to better describe the conscious and unconscious psychological dynamics impacting on women within patriarchal, political Chinese culture. This complex further relates to (1) denying her biological sex in order to avoid accusations of superego and, (2) the relationship with her son who is not only her son, but also her enemy regarding (political) power.
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Pollos , Feminidad , Femenino , Humanos , AnimalesRESUMEN
This article presents a psychobiography study of the famous Greek photographer Ellie Sougioultzoglou-Seraidari (Nelly's) (1899-1998). Nelly's was born in Aidini (Asia Minor), and in her early years she experienced the tragic events of the Greek-Turkish War (1919-1923). She studied photography in Dresden (Germany), and worked in Athens (Greece) and New York (U.S.A.). A narrative and cultural psychology framework was adopted to explore the way that Nelly's constructed her life story. An adjusted version of the 'Life-Story Interview' (McAdams & Bowman, 2001) was used that distinguishes between redemption versus contamination narratives. The narrative analysis of autobiographical materials revealed turning points and a central life theme. The photographer appeared to construct her life story as a process of reinventing herself or managing 'rebirth'. This construction matches the dominant narrative of Greek refugees of Asia Minor, following what is known in European history as the Asia Minor 'Great Catastrophe' (1922). Both narratives are surviving and thriving stories of 'rebirth'. The importance of making meaning of life stories within a specific socio-cultural and historical context is emphasised. Practice and research suggestions are provided.
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Narración , Femenino , Humanos , AlemaniaRESUMEN
BACKGROUND: Sexual minority men (SMM) are exposed to societal and structural stressors that translate into poor health outcomes. One such outcome is substance use, which research has long documented as a prominent disparity among SMM. Methamphetamine is a particularly deleterious substance for SMM because its use is often framed as a coping response to social and structural stressors. METHOD: Guided by stress and coping theory and a life course perspective, the purpose of this qualitative study is to assess the development of coping strategies in the context of prominent social and structural determinants among SMM living with HIV who use methamphetamine. RESULTS: Data were collected from 2016 to 2018 via in-depth interviews with 24 SMM living with HIV who use methamphetamine in San Francisco, CA. Mean age of participants was 47 and over half self-identified as ethnoracial minorities. Narrative analysis surfaced a sequential pattern of disconnection at foundational, relational, and recovery levels. This analysis revealed that multi-level stressors were present across the life course that amplified engagement in methamphetamine use. CONCLUSION: Findings highlight the benefits of holistic, integrated, and trauma-informed approaches to address the function of methamphetamine use as a response to societal, cultural, and institutional processes of stigmatization and discrimination. Peer-based approaches may also be beneficial to reframe the ways in which SMM living with HIV who use methamphetamine form and sustain relationships.
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BACKGROUND: Children with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care. METHODS: In April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank's narrative approach. RESULTS: Through analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed 'equilibrium' was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families. CONCLUSIONS: Our research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.
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Cuidadores , Entrevistas como Asunto , Padres , Investigación Cualitativa , Humanos , Niño , Femenino , Masculino , Padres/psicología , Cuidadores/psicología , Narración , Adulto , Personal de Salud/psicología , Preescolar , AdolescenteRESUMEN
Using a feminist narrative approach, this article explores how unintended pregnancy can rupture young lives, and how young people respond to and navigate these ruptures. We analyse qualitative data from a longitudinal cohort study in Luwero, Uganda, focusing on narratives of a girl and a boy about their recent experiences of unintended and unwanted pregnancy during COVID-19 school closures. We argue that laws, policies and norms relating to education, sexual and reproductive health, and the family in Uganda position young people in complex and contradictory ways, that create the conditions for unintended pregnancies, and restrict the choices open to them. The analysis traces how pregnancy ruptures their everyday lives, their identities, and relationships. Their narratives reveal gendered ways in which they enact identities to manage the ruptures. Families are sites of contestation, where gender and sexuality are regulated, but are also mobilised by young people to support their efforts to repair the ruptures. Our analysis underscores the importance of working with young people to understand their positionalities, resource environments and social networks as they make and navigate decisions about pregnancy, and of addressing the structural forces that underpin the rupturing effects of pregnancy on teenage lives.
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Suicide capability is a multidimensional concept that facilitates the movement from suicidal ideation to suicide attempt. The three-step theory of suicide posits that three overarching contributors comprise suicide capability: acquired (fearlessness about death and high pain tolerance), dispositional (genetics), and practical (knowledge and access to lethal means) capability. Although extensive research has investigated relationships between individual contributors of capability and suicide attempts, little research has considered how an individual's capability for suicide develops as a combination of contributors. Given suicide is multifaceted and complex, our understanding of capability development is relatively limited. This potentially negatively impacts prevention and capacity reduction-focused intervention efficacy. Therefore, this study aimed to explore how suicide capability develops. Fourteen community-based suicide attempt survivors were recruited using convenience sampling. Individual narratives were collected using open-ended interviews, and data were analysed using narrative analysis. Results indicated that participant narratives contained two elements. The first included how capability development and suicide attempt facilitation were often underpinned by the relational interplay between acquired and practical contributors. For example, participants without a high pain tolerance seeking attempt methods that were perceived to be painless. The second element contained a novel finding relating to the agentic role of participants when deciding and attempting suicide. Agency was revealed within and across narratives emphasising the active role the individual plays in their movement from ideation-to-action. The role of individual agency in coming to a decision to take one's own life and then acting warrants further consideration within contemporary suicide theories.
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This qualitative study consisted of in-depth, retrospective interviews with participants over the age of 18 who experienced child sexual abuse. Through narrative analysis, study findings shed light on three overall findings: the perception of memories, the perception of grooming, and the perception of the lived lives of child sexual abuse survivors. Findings suggest that the narratives elicited from the participants included current views but also past experiences and anticipation about the future, including individual and societal levels of meaning. These narratives are furthermore entangled and inexorably linked - temporally, culturally, generationally, materially, and emotionally - and the results are thus presented from a holistic perspective. Study findings help explain the complex dimensions concerning the lived experiences of child sexual abuse. As such, this research speaks to the field of social and health care practitioners working with children and families facing the complex phenomenon of child sexual abuse.
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Abuso Sexual Infantil , Narración , Investigación Cualitativa , Humanos , Femenino , Abuso Sexual Infantil/psicología , Masculino , Niño , Adulto , Adolescente , Entrevistas como Asunto , Persona de Mediana Edad , Estudios Retrospectivos , Adulto Joven , Adultos Sobrevivientes del Maltrato a los Niños/psicologíaRESUMEN
BACKGROUND: Patients with lung cancer suffer from physical, psychosocial and particularly emotional challenges. Twenty-five percent of patients with lung cancer are offered surgery as a potential cure. Nevertheless, 40% of surgically treated patients will experience recurrence. Paradoxically, research shows a dominant narrative of operable lung cancer patients 'being lucky', which silences other narratives about suffering, worries and emotional challenges. AIM: To explore narratives about operable lung cancer, particularly emotional reactions to illness and suffering in these narratives. METHODS: A qualitative design was applied. Six women and four men diagnosed with operable lung cancer were included from one university hospital in Denmark and interviewed 1 month after surgery using active interviews. The interviews were subject to dialogical narrative analysis. The theoretical foundation is social constructivism, with socio-narratological inspiration. FINDINGS: A typology of three emotional narratives emerged: 'staying cool', 'staying calm' and 'staying positive'. All three types of narrative are characterised by managing emotional reactions. Staying cool is characterised by not showing emotional reactions; staying calm narratives acknowledge emotional reactions, but that they need to be managed so that they do not burden relatives; and the last, staying positive, is characterised by managing emotional reactions in a positive direction. Together this typology of three emotional narratives revealed that operable lung cancer patients are under normative pressure from these socially preferred narratives of ideal emotional reactions to lung cancer. CONCLUSION: A typology of three emotional narratives were identified and can be called 'feeling rules' that guide patients after lung cancer surgery to manage their emotions. Consequently, if patients do not live up to these three emotional narratives of staying cool, calm and positive, they may be socially isolated and restricted from access to support.
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Emociones , Neoplasias Pulmonares , Narración , Humanos , Neoplasias Pulmonares/psicología , Neoplasias Pulmonares/cirugía , Masculino , Femenino , Persona de Mediana Edad , Anciano , Dinamarca , Investigación Cualitativa , Adaptación PsicológicaRESUMEN
In the fall of 2021, the Wick Poetry Center, a recognized international leader in creative writing interventions, launched the website Sacred Breath: Voices of Ohio Nurses in Response to COVID-19 (sacredbreathproject.com) with funding from the Ohio Nurses Foundation. The purpose of the website was to offer Ohio nurses an accessible platform to reflect on their personal and professional lived experiences as caregivers during an historic time of pandemic, sacrifice, uncertainty, and scarcity, and to share their voice with others. What resulted was 204 submissions over a three-month period with participant responses touching on widespread sentiments including grief, fatigue, anger, and resilience. It was from the gap in the current literature on pandemic narratives that the researchers of this study began a basic qualitative thematic analysis of the Sacred Breath project website (SBP) responses to gain a better understanding of how nurses, nurse educators, and nursing students made sense of and gave voice to their personal and professional lived experiences during the ongoing COVID-19 pandemic. While stories of nursing during the Covid-19 pandemic have been widely available and disseminated by popular media, academic studies have been slower to utilize qualitative and experimental methods to specifically address pandemic narratives and the resulting discourses by nurses working in and around clinical settings. The Wick Poetry Center at Kent State University has spent nearly forty years working in the community to address urgent social needs using expressive writing methods that are often overlooked by traditional social and arts outreach. The Wick Poetry Center engaged local academic networks and community health partners to invite nurses, nursing students, and nurse educators the Sacred Breath Project By evaluating responses to the intervention website, this qualitative study is aimed to fill this gap in the current literature as well as begin to understand how nurses made sense of their work lives during the ongoing Covid-19 pandemic. What does this paper contribute to the wider global clinical community? What is already known: What this paper adds.
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COVID-19 , Pandemias , COVID-19/enfermería , Humanos , Ohio , Adulto , Femenino , Masculino , Persona de Mediana Edad , SARS-CoV-2RESUMEN
Collaboration for nursing is a core competence and therefore educational interventions are essentials for collaborative skills. To identify such interventions, we carried out a study to understand nursing students' collaborative process. A narrative inquiry method was used to explore the collaborative process of first-year undergraduate nursing students. The analysis was conducted on field notes from 70 h of observation of 87 nursing students' collaboration during skills lab activities. It also included transcriptions of four focus group discussions with 11 students. The results are presented as a sequential process of (1) navigating in unfamiliar territory, (2) navigating together to cope, and (3) navigating together towards independency and the future nursing profession. We identified a transition from teacher-led assistance and guidance to student interdependency and reciprocal learning, ending with student-led assistance supporting independency. In line with Vygotsky's theory of zone of proximal development, different scaffolding interventions are needed depending on where the students are in the collaborative process.
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Conducta Cooperativa , Bachillerato en Enfermería , Grupos Focales , Narración , Estudiantes de Enfermería , Humanos , Estudiantes de Enfermería/psicología , Bachillerato en Enfermería/métodos , Grupos Focales/métodos , Relaciones Interprofesionales , Femenino , Investigación Cualitativa , MasculinoRESUMEN
OBJECTIVES: To investigate the knowledge and attitudes of mothers living in Denmark on the storage and usage of their children's biological material. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening test. Legal, ethical, and moral concerns have been raised in several countries of how consent is obtained best in pediatric biobank governance. Research on knowledge and attitudes of Danish parents on the usage of their children's biological material is scarce. METHODS: A coproduced study between a mother and 2 researchers. We analyzed 5 online focus group interviews using Ricoeur's hermeneutical narrative analysis. RESULTS: Mothers have very little knowledge on the storage and usage of their children's biological material. They consider the Phenylketonuria-screening test to be part of a birth package, which leaves very little option of choice. They accept donating the material as a token of appreciation in an act of altruism toward the wider society but are only comfortable supporting Danish research. CONCLUSIONS: An exploration of the communal narrative build in the interviews reveal an overall feeling of duty to help benefit society, an overwhelming trust toward the health system, and epistemic unjust storage information practices.
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Madres , Fenilcetonurias , Femenino , Recién Nacido , Niño , Humanos , Bancos de Muestras Biológicas , Actitud , DinamarcaRESUMEN
BACKGROUND: In Canada, nearly nine pregnancies end in stillbirth daily. Most of these families will go on to have subsequent pregnancies, but research into how best to care for these parents is lacking. This study explores the lived experiences and the most important aspects of person-centred care for Canadian families experiencing a pregnancy after a stillbirth. METHODS: This qualitative descriptive design used secondary data collected from an online, international survey for bereaved parents who reported having experienced a pregnancy subsequent to a stillbirth. Only parents who identified as Canadian were included in this study. Three open text questions were asked about parents' experiences in their subsequent pregnancy. An inductive thematic analysis approach was used with open coding and a constant comparative method. RESULTS: Families' responses fell into six main themes that identified what they would have preferred for high quality, excellent care. These included: (1) recognizing anxiety throughout the subsequent pregnancy, (2) wanting one's voices and concerns to be heard and taken seriously, (3) needing additional and specific clinical care for reassurance, (4) desiring kindness and empathy from caregivers and others, (5) seeking support from others who had also experienced pregnancy after stillbirth; and (6) addressing mixed emotions including guilt, continuity of care and carer, positive thoughts versus more realistic ones, and poignant feelings of self-blame. CONCLUSIONS: Participants' responses identified that pregnancy after stillbirth is an extremely stressful time requiring patient-oriented care and support, both physically and psychologically. Families were able to articulate specific areas that would have improved the experience of their subsequent pregnancy. Parents asked for high-quality clinical and psychosocial prenatal care that was specific to them having experienced a prior stillbirth. They also requested connections to others experiencing this similar scenario. Further research is needed to delineate what supports and resources would be needed to ensure this care would be available to all families experiencing pregnancy after stillbirth across Canada and their caregivers.
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Padres , Mortinato , Embarazo , Femenino , Humanos , Mortinato/psicología , Canadá , Padres/psicología , Atención Prenatal/métodos , Emociones , Investigación CualitativaRESUMEN
BACKGROUND: The Three Delays Framework was instrumental in the reduction of maternal mortality leading up to, and during the Millennium Development Goals. However, this paper suggests the original framework might be reconsidered, now that most mothers give birth in facilities, the quality and continuity of the clinical care is of growing importance. METHODS: The paper explores the factors that contributed to maternal deaths in rural Pakistan and Mozambique, using 76 verbal autopsy narratives from the Community Level Interventions for Pre-eclampsia (CLIP) Trial. RESULTS: Qualitative analysis of these maternal death narratives in both countries reveals an interplay of various influences, such as, underlying risks and comorbidities, temporary improvements after seeking care, gaps in quality care in emergencies, convoluted referral systems, and arrival at the final facility in critical condition. Evaluation of these narratives helps to reframe the pathways of maternal mortality beyond a single journey of care-seeking, to update the categories of seeking, reaching and receiving care. CONCLUSIONS: There is a need to supplement the pioneering "Three Delays Framework" to include focusing on continuity of care and the "Four Critical Connection Points": (1) between the stages of pregnancy, (2) between families and health care workers, (3) between health care facilities and (4) between multiple care-seeking journeys. TRIAL REGISTRATION: NCT01911494, Date Registered 30/07/2013.
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Muerte Materna , Embarazo , Femenino , Humanos , Muerte Materna/prevención & control , Mozambique/epidemiología , Pakistán/epidemiología , Aceptación de la Atención de Salud , Mortalidad Materna , Continuidad de la Atención al PacienteRESUMEN
BACKGROUND: Mothers who have children removed from their care often have complex needs. These women have poor health outcomes and are dying earlier than their peers from preventable and amenable causes. Yet there is little known about how health care services might mitigate these risks. This study aimed to listen to the voices of women who had children removed from their care to understand their experiences of health and healthcare. METHODS: We used a narrative approach to collect and analyse interview data with six mothers who had experienced child removal in England. Each participant was asked to reflect on their life and main health challenges. RESULTS: Three narrative subplots were developed to consolidate experiences of unmet health need: (i) 'on paper you're normal': narratives of complex need, (ii) 'in my family, everyone had issues': narratives of whole family need and (iii) 'I'm still mummy, no matter where they are': narratives of maternal identity and health. CONCLUSIONS: Findings highlight limitations within current systems of support, including a culture of distrust and women falling between the gaps of services. Women's narratives illustrate opportunities for health intervention, especially immediately following child removal.
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Atención a la Salud , Madres , Femenino , Niño , Humanos , Investigación Cualitativa , InglaterraRESUMEN
INTRODUCTION: Our aim is to explore the ways in which a patient and a general practitioner (GP) negotiate knowledge claims stemming from different epistemic domains while dealing with a mismatch between experiential and biomedical knowledge during the clinical consultation. We interpret their interaction in relation to the sociocultural context in which their negotiation is embedded and identify factors facilitating their successful negotiation (a medical error is avoided). METHODS: Based on a narrative analysis of a verbatim transcript of a complete naturally occurring primary care consultation, we explore the moment-to-moment unfolding of talk between the patient and the GP (two women). FINDINGS: The patient experiences symptoms of what she interprets as a thyroid condition, and indirectly asks for medication. She presents her case by drawing on experiential knowledge ('it feels like my metabolism has shut down') and biomedical knowledge (while suggesting a diagnosis and a diagnostic test). The GP informs her that her thyroid blood tests are normal and uses biomedical knowledge to explain why she turns down the patient's request. This stages a potential conflict between the patient's embodied experiential knowledge and the doctor's biomedical knowledge. However, during their encounter, the patient and the GP manage to co-construct the patient's illness story and make shared decisions about further actions. CONCLUSION: The transition from potential conflict to consensus is a result of the mutual efforts of two parties: a patient who persistently claims experiential as well as biomedical knowledge while at the same time deferring to the GP's professional knowledge, and a GP who maintains her epistemic authority while also acknowledging the patient's experiential and biomedical knowledge. PATIENT AND PUBLIC CONTRIBUTION: Our empirical data are sourced from a data archive and patients were not involved in the design or conduct of the study, but our study is based on a naturally occurring clinical consultation with a patient.
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Médicos Generales , Negociación , Humanos , Femenino , Emociones , Atención Primaria de Salud , Derivación y Consulta , Relaciones Médico-PacienteRESUMEN
INTRODUCTION: People with poststroke acquired brain injury (ABI) face a complex and often troubled identity reconstruction journey. The literature is rich with studies related to the psychological and neuropsychological components involved in rehabilitation, but it is lacking with respect to the investigation of the existential dimensions and the challenges associated with finding new senses and meanings for one's identity and future perspectives, body and interpersonal relationships. METHODS: The aim of this study is to investigate the narrative processes of identity reconstruction after brain damage. Through a qualitative approach, 30 autobiographical narratives about self, body and the relationships with others were collected and analyzed. Semistructured interviews were used for the data collection. Narrative and positioning analysis were applied. RESULTS: Four main positionings emerged: sanctioning a radical break with one's previous life; assuming a sense of salvation and compulsory as well as irreversible adaptation to the limitations associated with one's condition; feeling different and disabled; and considering new possibilities and active constructions of self-being in relationship with others. These results underline the narrative processes of construction of the injury and the identity and delineate possible resources and instruments to improve the clinical practice for health practitioners. They are also valuable for other professionals who deal with neurological services and rehabilitation, such as psychological counselling and support for persons who have experienced ABI and their families. PATIENT OR PUBLIC CONTRIBUTION: This work resulted from a close collaboration between two universities and a hospital neurological rehabilitation department in the Veneto Region (Northern Italy). Three associations of people with stroke and their families living in the same area contributed to designing the research on the basis of the needs expressed by their members with the aim to identify strategies and devices to be implemented in the public service to improve the care pathway. They also participated in the interpretation of the data.
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Eating disorders (EDs) are serious mental health illnesses, yet there is a need to better understand the illness experience to improve treatment outcomes. Qualitative research, and narrative approaches in particular, can elicit life stories that allow for the whole illness journey to be explored. This study aimed to explore the experiences of women with a history of an ED, identifying the life events they perceived were relevant to the onset of their ED through to recovery. Interviews were conducted with 18 women with lived experience of an ED. Through structural narrative analysis, an overarching storyline of childhood loss contributing to a belief of conditional acceptance, fear of abandonment and struggle to seek emotional support due to the fear of being a burden was identified. Negative experiences with the health sector were common. These findings have implications for the way medical professionals respond to help seeking and deliver treatment.
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Niño Abandonado , Miedo , Trastornos de Alimentación y de la Ingestión de Alimentos , Medicina Narrativa , Investigación Cualitativa , Humanos , Femenino , Niño , Adolescente , Adulto Joven , Adulto , Persona de Mediana Edad , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Niño Abandonado/psicología , Entrevistas como Asunto , Trastorno por Atracón/psicología , Trastorno por Atracón/terapia , Bulimia Nerviosa/psicología , Bulimia Nerviosa/terapia , Anorexia Nerviosa/psicología , Anorexia Nerviosa/terapia , Emociones , Conducta de Búsqueda de AyudaRESUMEN
Severe illness is often an existential threat that triggers emotions like fear, stress, and anxiousness. Such emotions can affect ill patients' encounters with healthcare personnel. We present a single case study of an older woman who contracted COVID-19 and her challenge to be recognised by healthcare personnel in the early pandemic. Storytelling is vital to understand how patients can create meaning in illness as it gives them the opportunity to reshape and restore their past and to project a future. We used Arthur Frank's dialogical narrative analysis to explore how one patient experienced her encounters with healthcare personnel. Although she felt very ill from COVID-19, she experienced being almost invisible and not being believed by healthcare personnel in a system marked by high stress levels and uncertainty. Despite rejections and illness, she managed to mobilise her resources, even though she depended on significant others. Her story brings forward altered self-understanding and growth. The importance of facilitating dialogical settings for healthcare professionals through patient storytelling also contributes to a broader societal understanding of illness beyond a biological perspective.