A personal narrative intervention combined with self-monitoring strategies: Outcomes for Mandarin-speaking adolescents with Down syndrome.

BACKGROUND: Personal narratives play an essential role in children's social and academic development. However, children with Down syndrome have ongoing challenges with constructing and communicating personal narratives. METHODS: Using a single-case multiple-probe across participants design, we examined whether a targeted intervention could improve both micro- and macro-structural aspects of personal narratives from Chinese adolescents with Down syndrome. RESULTS: All three participants demonstrated high treatment effects in two macrostructural narrative outcomes (i.e., narrative element complexity and narrative coherence) in response to the intervention and moderate to high treatment effects in the microstructural narrative outcomes (i.e., the mean length of utterance in words and the number of different words). However, all participants demonstrated limited improvements in narrative cohesion. These effects were maintained and generalised in a different narrative condition. CONCLUSIONS: The preliminary findings support the feasibility and effectiveness of the personal narrative intervention incorporated with self-monitoring strategies for adolescents with Down syndrome.

Tell us how you taste wine, and we will tell you what kind of expert you are!

Whether "gurus", "emperor" or "influencers", wine consumers need references to help them choosing and buying wines. Given the diversity of possible sources (reviews from wine guides, wine merchants'recommendations or back wine label), where should they turn? Are all wine experts consensual in the way they taste wines? Do they differ depending on their domain of expertise: wine makers, sellers, or critics? This study aimed at understanding how experts apprehend wine tasting in relation to their professional objectives. A mixed design strategy combining content analysis of personal narratives of renowned wine experts with semi-structured interviews of wine professionals was used. Results confirmed that wine experts shared a common way of tasting wines, although their objectives and the way they report their wine tasting experiences differ according to their professional activities. Makers transcribe their perceptions by a list of sensory and technical-based terms focused on the absence or presence of wine defects to assess technical acceptability, Sellers are storytellers generating appeal and pleasure for consumers, and Critics write positive and metaphoric reviews to better highlight the best samples they taste. This raises new questions for the industry about the way in which wines are tasted, a routine practice that is internationally followed by wine professionals, but which may need to be renewed. Combining different data sources appeared to be a promising way to gain in-depth information in exploratory research.

Significance of an Interprofessional Healthy Aging Program for Community-Dwelling Older Adults: A Narrative Study.

Participation is widely recognized as an important health determinant for older adults. Exploring interventions to promote active participation of community-dwelling older adults is an important step in translating current knowledge into practice. Few studies have examined community-level interventions to support older adults' participation. The study purpose was to examine the significance of the lived experiences of community-dwelling older adults who participated in an interprofessional healthy aging promotion program. The specific aims were to uncover the narrative significance of the lived experiences and how they evolved and intertwined with the life histories of the older adults 2 years after the intervention ended. A narrative inquiry design was used. Four key informants participated in two semi-structured interviews and a member-checking process. The data were analyzed from a three-dimensional inquiry space of time and continuity, place and context, and social interactions. The findings affirmed three core threads that wove the participants' lived experiences within the program together with their life histories after the intervention. These were enjoyment, learning, and sharing. Four themes revealed the essential elements of the lived experience, and three others exposed participants' growth and life enrichment, all being fundamental to participation. The 3-year community-level intervention was valued and a novel opportunity for facilitating participation and successful aging. It allowed the participants to acquire an evolved vision of self, have meaningful interactions, develop the means to engage in future community activities, implement new self-care strategies, and establish memories and friendships significant for life participation.

Raising awareness of anti-fat stigma in healthcare through lived experience education: a continuing professional development pilot study.

BACKGROUND: Anti-fat attitudes and weight-based discrimination are prevalent in healthcare settings and among healthcare practitioners and clinical trainees, and can result in immense harm to patients. There is increasing recognition that anti-fat bias in healthcare is a critical issue that must be addressed, but there is a dearth of evidence demonstrating sustained attitude and behavioural change among clinicians, illustrating a need for more innovative educational approaches and rigorous evaluation. We describe the co-design and delivery of a narrative-based continuing professional development curriculum aimed at raising awareness of weight-based bias and stigma. METHODS: Our research team of lived experience educators, clinicians and researchers collaboratively developed a series of seven podcast episodes comprised of narrative descriptions of lived experiences with and impacts of weight bias, stigma and discrimination in healthcare settings, as well as a post-podcast workshop to facilitate reflection and discussion between participants. The curriculum was piloted among 20 clinicians practicing at a large urban hospital in Mississauga, Canada. We explored feasibility, acceptability and learning impact by analyzing responses to questionnaires completed following each podcast episode and responses shared during the workshops and follow-up feedback sessions. RESULTS: We observed high acceptability and feasibility of the curriculum. Participants experienced the podcast as a practical and convenient learning format and the workshop as a valuable opportunity to collectively debrief and reflect. The learning impact of the curriculum was strong; participants described a range of emotions elicited by the podcasts, engaged in self-reflection, and expressed a desire to modify clinical approaches. Barriers to the application of learnings identified by participants include pervasiveness of the use of body mass index (BMI) as an indicator of risk and a criterion for referral; discomfort with difficult conversations; prevalent biomedical understandings about the association between weight and health; and clinicians' defensiveness. CONCLUSION: This pilot study yielded promising findings and demonstrated potential impact on weight bias and stigma among healthcare providers. Necessary next steps include conducting larger scale, rigorous evaluations of the curriculum among broader populations, both health professions trainees and current healthcare providers.

A qualitative analysis of the breastfeeding experiences of mothers who are nurses and nutritionists.

BACKGROUND: From a medical standpoint, breastmilk is the optimal option for feeding a baby, relegating the cultural, social, and material determinants to breastfeeding. Worldwide, breastfeeding rates are low, especially among working mothers. Healthcare providers have low breastfeeding rates due to several barriers to lactation, i.e. work schedule andlack of private places for pumping. METHOD: A descriptive qualitative methodology was applied to examine the breastfeeding experiences of Ecuadorian mothers who are healthcare professionals. Twenty healthcare professionals who breastfed their babies took part in the research. Data gathering employed synchronous semi-structured interviews in Spanish. The data analysis followed the Phronetic Iterative Approach. RESULTS: Women shifted the preconceived idea of the ideal breastfeeding scenario concerning duration, promotion, and support, ideals which are constructed in their training as healthcare professionals. Although these women believe that breast milk and breastfeeding is the best way to feed a baby, the internalized ideal of breastfeeding shifted with the experience of motherhood. Although they had that clash between the ideal and the external reality, they continued breastfeeding their babies, and those experiences resulted in them improving their professional practice. CONCLUSIONS: This study demonstrated that breastfeeding for this group of women appears to be a unique relational and identity negotiation process. The findings emphasize that experiencing breastfeeding for this group of healthcare providers positively shifted how they communicate breastfeeding with their patients in the clinical encounter. Ensuring that healthcare professionals acquire a different approach for educating and communicating about lactation is an essential determinant in efforts to improve breastfeeding rates in Ecuador.

Nada sobre nós sem nós: contribuições de Georges Canguilhem e Donald Winnicott aos estudos do campo da recuperação pessoal / Nothing about us without us: the contributions of Georges Canguilhem and Donald Winnicott to research in the field of recovery / Nada sobre nosotros sin nosotros: aportaciones de Georges Canguilhem y Donald Winnicott a los estudios en el campo de recuperación personal

Articulamos o tema da recuperação pessoal (recovery) com conceitos de saúde e doença de Georges Canguilhem e Donald Winnicott, em diálogo com registros autobiográficos de Patricia Deegan, pesquisadora e ativista do movimento do recovery. Originada na década de 1970, em movimentos sociais de usuários de Saúde Mental, a recuperação pessoal vem sendo incorporada a espaços acadêmicos, serviços e políticas, como expressa sua inclusão no Plano de Ação em Saúde Mental da Organização Mundial da Saúde (OMS). Reconhecendo sua utilidade como ferramenta conceitual e lógica de cuidado ainda pouco difundida no Brasil, buscamos contribuir com sua consolidação reafirmando que a experiência intersubjetiva é substrato fundamental para a avaliação da saúde, e considerando a dimensão psicossocial da Reforma Psiquiátrica que orienta a Política de Saúde Mental brasileira.

This article articulates the theme of recovery with concepts of health and disease in the works of Georges Canguilhem and Donald Winnicott in dialog with autobiographical accounts of the experiences of the recovery movement researcher and activist Patricia Deegan. The recovery model, which arose from mental health consumer groups in the 1970s, has been incorporated into academic settings, services and policies, as illustrated by its inclusion in the WHO's Mental Health Action Plan. Recognizing its usefulness as a conceptual and logical care tool whose use is not widespread in Brazil, we seek to contribute to its consolidation, reaffirming that intersubjective experience is the essential substrate for the health assessment and considering the psychosocial dimension of the mental health reform underlying Brazil's mental health policy.

Articulamos el tema de recuperación personal con conceptos de salud y enfermedad en Georges Canguilhem y Donald Winnicott, en diálogo con registros autobiográficos de Patricia Deegan, investigadora y activista del movimiento de recovery. Originada en la década de 1970 en movimientos sociales de usuarios de salud mental, la recuperación personal ha sido incorporada en espacios académicos, actividades y políticas, como lo expresa su inclusión en el Plan de Acción de Salud Mental de la Organización Mundial de la Salud (OMS). Reconociendo su utilidad como herramienta conceptual y lógica de atención aún poco difundida en Brasil, buscamos contribuir para su consolidación, reafirmando que la experiencia intersubjetiva es sustrato fundamental para la evaluación en salud, y considerando la dimensión psicosocial de la Reforma Psiquiátrica que orienta la Política Brasileña de Salud Mental.

The Seven Words That Changed My Perspective on Patient Care.

"I'm already in so much pain, I was stuck in the car for hours, and now I have to see a student instead of my doctor?" She scoffs, crosses her arms, and looks away. Trying to understand why she is in so much pain I ask, "Are you happy with the care you're receiving?" She looks at me for the first time and I see her shoulders drop. The response that followed is one I will never forget, and is part of a larger lesson I learned involving the power of open-ended questions and their ability to foster understanding of patients in the context of their life stories. Here, I share patient stories and the 7 words that taught me the gift of genuine curiosity.

Incorporating personal narratives in positive psychology interventions to manage chronic pain.

In this perspective paper, we argue for incorporating personal narratives in positive psychology interventions for chronic pain. Narratives refer to the telling and retelling of events. Narratives detail accounts of events and provide rich, in-depth information on human interactions, relationships, and perspectives. As such, narratives have been used to understand people's experiences with pain and pain coping mechanisms-as well as to facilitate therapeutic outcomes. Furthermore, narrative research has shown that narration can help restore and promote relief, calm, hope, self-awareness, and self-understanding in chronic pain sufferers. Positive psychology interventions have been successful in improving the lives of people living with chronic pain, but these psychology interventions do not typically incorporate personal narratives. Still, narrative, and positive psychology scholarship foci overlap, as both aim to enhance people's quality of life, happiness, and well-being, and to promote the understanding of psychosocial strengths and resources. In this article, we provide a rationale for incorporating personal narratives as an agentic form of positive psychology intervention. To that aim, we outline areas of convergence between positive psychology and narrative research and show how combining positive psychology exercises and narration can have additive benefits for pain sufferers. We also show how integrating narration in positive psychology intervention research can have advantages for healthcare research and policy.

Using personal narrative to promote person-centered values in aging, dementia, and caregiving.

Personal narrative is a powerful way to include people in their care and to understand their values that drive their needs. In this paper, we describe a program designed to teach oral history to clinicians and trainees in the field of aging, dementia and caregiving. The training uses empathic listening, open-ended interviewing, and the discovery of individual values and experience to breakdown stigma and preconceptions of what it means to age with cognitive impairment. Sharing these stories of aging, dementia, and caregiving becomes an important tool to break down stereotypes, promote person-centered care, and advocate for the unheard. The profound impact of the oral history process is felt by the narrator, the interviewer and the listener. Human beings are wired for stories, and oral history taps into that power to connect us and provide better care through better understanding.

Evaluation of online videos to engage viewers and support decision-making for COVID-19 vaccination: how narratives and race/ethnicity enhance viewer experiences.

Background: Vaccine hesitancy has hampered the control of COVID-19 and other vaccine-preventable diseases. Methods: We conducted a national internet-based, quasi-experimental study to evaluate COVID-19 vaccine informational videos. Participants received an informational animated video paired with the randomized assignment of (1) a credible source (differing race/ethnicity) and (2) sequencing of a personal narrative before or after the video addressing their primary vaccine concern. We examined viewing time and asked video evaluation questions to those who viewed the full video. Results: Among 14,235 participants, 2,422 (17.0%) viewed the full video. Those who viewed a personal story first (concern video second) were 10 times more likely to view the full video (p < 0.01). Respondent-provider race/ethnicity congruence was associated with increased odds of viewing the full video (aOR: 1.89, p < 0.01). Most viewers rated the informational video(s) to be helpful, easy to understand, trustworthy, and likely to impact others' vaccine decisions, with differences by demographics and also vaccine intentions and concerns. Conclusion: Using peer-delivered, personal narrative, and/or racially congruent credible sources to introduce and deliver vaccine safety information may improve the openness of vaccine message recipients to messages and engagement.

Topic and Content of Personal Narratives of Children from Three East Asian Cultures and Three English-Speaking Cultures: A Collaborative Qualitative Analysis.

PURPOSE/INTRODUCTION: Narrative language skills are critical for effective social interactions and academic success. Consequently, narratives are regularly an aspect of assessment and intervention for children with communication impairments, supporting the need for information about typical development from children across cultures. Development of coherent personal narratives is associated with growth of both one's individual identity and cultural identity which are linked to psychological well-being. The topics and contents of children's personal stories can provide insight into cultural influences on what children consider important, how they interpret experiences, and their values and beliefs, which in turn contribute to their developing individual and cultural self-identity. The purpose of this study was to investigate the topics and content of personal narratives told by typically developing 10-year-old children from East Asian and Western English-speaking cultures. METHODS: There were 20 children in each of three East Asian language groups - Mandarin, Cantonese, and Korean; and 62 children in the English-speaking groups (22 in the USA and 20 each in the Australian and New Zealand groups). In each group, half were boys and half were girls. Children responded to prompts from the Global TALES protocol to elicit personal narratives. All language samples were transcribed, translated, and coded for topic choices using qualitative content analysis in collaborative discussions by the four authors, who included an English-speaking author from the USA (C.E.W.), and three authors, who are native speakers of the three East Asian languages, Mandarin (K.-M.C.), Cantonese (A.M.-Y.W.), and Korean (J.P.L.). RESULTS: Results on topics in stories from East Asian and Western English-speaking cultures are described in relation to literature on anthropology. English-speaking children and East Asian children in this study talked about similar topics in their personal narratives, but the frequency of these topics within their stories varied. Possible explanations for differences in story topics are discussed within a framework on cultural dimensions. CONCLUSION: Evaluation of the topics of children's personal narratives provides insight into what is important to the children and the way they view their worlds. This information may inform clinical approaches to assessment and intervention with children with communication impairments, encouraging clinicians to go beyond analysis of language structure to consider multiple factors that influence communicative competence.

Perceptions of Palliative and End-Of-Life Care Capacity Among Frontline Staff and Administrators in Long-Term Care Homes During the COVID-19 Pandemic in Ontario, Canada: A Mixed-Methods Evaluation.

OBJECTIVES: The COVID-19 pandemic has greatly affected the morbidity and mortality of residents in long-term care (LTC) homes. However, not much is known about its impact on staff's perception of their capacity to provide palliative and end-of-life (EOL) care for LTC residents over the course of the pandemic. We investigated changes in self-reported confidence among LTC workers and their experience in providing palliative and EOL care to residents before and during the COVID-19 pandemic. DESIGN: Mixed-methods evaluation using a survey (n = 19) and semistructured interviews (n = 28). SETTING AND PARTICIPANTS: Frontline workers from 9 LTC homes who participated in Communication at End-of-Life Program in Ontario, Canada, between August 2019 and March 2020. METHODS: The survey captured LTC staff's confidence level, including attitudes toward death and dying; relationships with residents and families; and participation in palliative and EOL care. The interviews identified facilitators and barriers to providing palliative and EOL care during the pandemic. RESULTS: The COVID-19 pandemic negatively impacted frontline LTC staff's confidence in their role as palliative care providers. Participants also reported notable challenges to providing resident-centered palliative and EOL care. Specifically, visitation restriction has led to increased loneliness and isolation of residents and impeded staff's ability to build supportive relationships with families. Furthermore, staffing shortages due to the single-site work restriction and illness increased workload. Psychological stress caused by a fear of COVID-19 infection and transmission also hindered staff's capacity to provide good palliative and EOL care. CONCLUSIONS AND IMPLICATIONS: Frontline LTC staff-even those who felt competent in their knowledge and skills in providing palliative and EOL care after receiving training-reported notable difficulties in providing resident-centered palliative and EOL care during the COVID-19 pandemic.

How Can You Mend a Broken Heart?

Being a resident is hard. Being a resident dealing with a recent breakup is even harder. I wrote this piece after a serendipitous encounter on Valentine's Day with an elderly woman who embraced her messy journey to finding love, no matter her age or circumstance. We learn a lot from our patients: from their bodies, physiologies, and illnesses, we learn to become stronger clinicians; from their stories, traumas, and emotions, we learn to become more full, well-rounded humans. Looking back, I think about how easily I almost missed this heartfelt connection by being absorbed in my usual checklist of tasks for a new hospital admission. My patient's keen insight into her own romantic life taught me a vital skill in both medicine and personal relationships: the importance of being open to the unexpected.Annals "Online First" article.

Narrative inquiry of translators' identities: A study of meaning-making in narrating knowledge.

Translators have generated retrospective accounts of their working experience, which contribute to an expansive corpus of knowledge on translation. A plethora of research has explored how this knowledge could enrich our perception of varied questions concerning translation process, strategies, norms, and other social and political respects within conflictual settings in which translation has engaged. In contrast, few attempts have been made to gain a translator-centered understanding of what this knowledge could mean for its narrators. In line with narrative inquiry, this article proposes a human-centered approach to translator's knowledge narrating and a shift from positivistic to post-positivistic investigation into specific questions about how translators make sense of who they are as well as the meaning of their lives by structuring their experiences into a sequential and meaningful narrative. The general question is what strategies are employed to construct what types of identities. A holistic and structured analysis of five narratives by senior Chinese translators involves macro and micro dimensions. With a view to methods employed by scholars in different fields, the study identifies four types of narratives, namely, personal, public, conceptual/disciplinary, and metanarrative, which are used throughout our cases. Micro-analysis of narrative structure demonstrates that life events are often arranged in a chronological sequence, among which critical events are favored to indicate a turning point or crisis for transformation. Storytellers tend to adopt strategies of personalizing, exemplifying, polarizing, and evaluating to construct their identities and what translation experience means to them. This article concludes that apart from communicating translation knowledge, translators make sense of what translation experience means to them as a professional translator and more importantly as a real person living through social-cultural-political vicissitudes, thus contributing to a more translator-centered vision of translation knowledge.

All I missed in the therapeutic relationship: The lived experience narrative of a mental health nurse receiving mental healthcare.

WHAT IS KNOWN ON THE SUBJECT?: The therapeutic relationship is crucial for mental health practice, especially to practice that is recovery-orientated. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: This lived experience suggests that mental health professionals can be a long way from knowing the service users' feelings and their precise needs. The narrative reveals how mental health professionals maintain stereotypes and prejudices against people with mental health conditions and how these are reflected in their practice through lack of respect and users' dignity. WHAT ARE THE IMPLICATIONS FOR MENTAL HEALTH NURSING?: This lived experience narrative highlights the need to humanize care. ABSTRACT: INTRODUCTION: The therapeutic relationship is not always functional in clinical practice due to various factors, such as lack of time, lack of job motivation, exhaustion and rejection towards the person cared for. AIM: The aim of this study is to illustrate to professionals the needs of the persons they care for and how they see the world. METHOD: The aim was achieved through the development of a lived experience narrative. RESULTS: This lived experience narrative describes the experience of a mental health nurse since her first psychotic symptoms and her perceptions of the therapeutic relationship with mental health staff in her trajectory from the first psychiatric appointment until her last contact with the community mental health services. DISCUSSION: This narrative suggests that mental health professionals are sometimes far from discovering what service users are feeling and their precise needs. This highlights the need to humanize mental healthcare.

Narrative recall in relapsing-remitting multiple sclerosis: A potentially useful speech task for detecting subtle cognitive changes.

Our research studied relapsing-remitting multiple sclerosis (RRMS). In half of the RRMS cases, mild cognitive difficulties are present, but often remain undetected despite their adverse effects on individuals' daily life. Detecting subtle cognitive alterations using speech analysis have rarely been implemented in MS research. We applied automatic speech recognition technology to devise a speech task with potential diagnostic value. Therefore, we used two narrative tasks adjusted for the neural and cognitive characteristics of RRMS; namely narrative recall and personal narrative. In addition to speech analysis, we examined the information processing speed, working memory, verbal fluency, and naming skills. Twenty-one participants with RRMS and 21 gender-, age-, and education-matched healthy controls took part in the study. All the participants with RRMS achieved a normal performance on Addenbrooke's Cognitive Examination. The following parameters of speech were measured: articulation and speech rate, the proportion, duration, frequency, and average length of silent and filled pauses. We found significant differences in the temporal parameters between groups and speech tasks. ROC analysis produced high classification accuracy for the narrative recall task (0.877 and 0.866), but low accuracy for the personal narrative task (0.617 and 0.592). The information processing speed affected the speech of the RRMS group but not that of the control group. The higher cognitive load of the narrative recall task may be the cause of significant changes in the speech of the RRMS group relative to the controls. Results suggest that narrative recall task may be effective for detecting subtle cognitive changes in RRMS.

A Personal Narrative Intervention for Adults With Autism and Intellectual Disability.

Due to the unique social cognitive profiles of individuals with autism spectrum disorder (ASD) with and without intellectual disability (ID) sharing coherent and complex personal narratives can be challenging. To address these challenges research has focused on teaching macrostructure components using visual supports and repeated opportunities to practice. Despite success by young children with ASD and ID, the application of this instruction for adults with ASD with and without ID is still largely unknown. An ABAB single case withdrawal design was used to determine the effects of a personal narrative intervention to teach macrostructure within participant-generated personal narratives. Results indicate all participants demonstrated more coherent and complex personal narratives with the intervention. The results and implications for practice are discussed.

O cuidado em saúde mental e a participação política de usuários e familiares na ressignificação do estigma sobre os transtornos mentais / Mental health care and the political participation of users and families in the resignification of stigma on mental disorders

Resumo A persistência do estigma associado aos transtornos mentais deve ser um problema a ser enfrentado pelos sistemas de saúde na luta contra a discriminação de pessoas que experienciam sofrimento psíquico. Este estudo qualitativo, do tipo narrativo, objetiva compreender a experiência de conviver com o estigma relacionado aos transtornos mentais a partir dos relatos de usuários e de familiares de pessoas atendidas em Centros de Atenção Psicossocial de diferentes regiões da cidade de Fortaleza-CE. Foram entrevistados quatro usuários e três familiares que guardavam a particularidade de pertencerem a um núcleo da luta antimanicomial. Por meio de um roteiro com perguntas sobre as experiências individuais na busca por cuidados, as informações produzidas foram analisadas pelo método da hermenêutica dialética. Os resultados mostram que o estigma se faz presente no cotidiano, implicando sofrimento e discriminação. Contudo, os processos de cuidado recebidos, orientados para o reconhecimento dos potenciais e da condição de sujeitos políticos, ressignificaram percepções negativas sobre si mesmos e sobre os serviços em que eram atendidos. Esse processo colaborou com o engajamento dos usuários e dos familiares nas instâncias oficiais de controle social e no movimento antimanicomial, instigando, entre os sujeitos, a defesa do cuidado humanizado e do combate ao estigma.

Abstract The persistence of stigma associated with mental disorders is a problem that health systems must face in the fight against discrimination of people who experience psychological distress. This qualitative narrative study aims to understand the experience of living with the stigma related to mental disorders from the reports of users and family members of people assisted in Psychosocial Care Centers in different regions of the city of Fortaleza-CE. Four users and three family members who kept the particularity of belonging to a nucleus of the anti-asylum struggle were interviewed. Through a script with questions about individual experiences in the search for care, the information produced was analyzed by the method of dialectical hermeneutics. The results show that stigma is still present in everyday life, implying suffering and discrimination of these people. However, the mental health care processes received, which were oriented towards the recognition of the potential and condition of political subjects, gave new meaning to negative perceptions about themselves and about the services in which they were treated. This process contributed with the engagement of users and family members in official instances of social control and in the anti-asylum movement, instigating, among the subjects, the defense of humanized care and the fight against stigma.

Huntington, la enfermedad que transforma todo a su paso: Narrativas de cuidadoras familiares de la costa Caribe colombiana / Huntington, the disease that transforms everything in its path: Narratives of family caregivers from the Colombian Caribbean coast

Resumen Este estudio cualitativo pretende explorar las transformaciones experimentadas a nivel emocional, físico y social por cuidadoras familiares de pacientes con enfermedad de Huntington en la costa Caribe de Colombia. Las participantes se seleccionaron de la base de datos de la Fundación Factor H, lográndose un punto de saturación teórica con 10 historias de vida narradas desde la voz del cuidador y recolectadas entre agosto de 2020 y mayo de 2021. La guía de preguntas se refinó mediante panel de expertos y se empleó bajo el consentimiento de las participantes. La categoría central "Huntington, la enfermedad que transforma todo a su paso" se desagregó a partir de tres subcategorías: "Transforma mi mundo", "Transforma mi corazón y mi alma" y "Transforma mi cuerpo"; a partir de las cuales se obtuvo que el cuidado es ejercido en su totalidad por mujeres, quienes experimentaron pérdidas en diferentes esferas: educativo, social, laboral, afectivo con fuertes impactos en su salud física, emocional y, por ende, en su vida cotidiana. Se concluye que la enfermedad de Huntington está permeada por señales adversas para el paciente, su cuidador y la familia; de ahí la necesidad de centrar esfuerzos colectivos para su abordaje integral.

Abstract Qualitative study to explore the transformations experienced at an emotional, physical, and social level by family caregivers of patients with Huntington's disease on the Caribbean coast of Colombia. Participants were selected from the Factor H Foundation database, obtaining a theoretical saturation point with 10 life stories telling from the caregiver's voice, gathered between August 2020 and May 2021. The driving question was refined by a panel of experts and was used with the consent of the participants. The main category, "Huntington, the disease that transforms everything in its path," was divided into three subcategories: "Transforms my world," "Transforms my heart and soul," and "Transforms my body." These subcategories unveiled that caregivers are mostly women who experienced losses in different aspects of their lives: educational, social, work, affective with strong impacts on their physical and emotional health, and, therefore, in their daily life. It is concluded that Huntington's disease has adverse signals for the patient, their caregiver and the family; hence the need to focus collective efforts for its comprehensive approach.

"Part of Who You Are": Reflections on Being a Military Psychiatrist.

This personal narrative reflects on the writer's formation of a military identity. It discusses the author's experience with the effects of military culture on both personal and group identity and the challenges of leaving the military.