What is not, but might be: The disnarrated in parents' stories of their child's cancer treatment

The study of illness narratives is based on the premise that stories are told for a reason and storytellers make narrative decisions on what to include and leave out of a story, the style of narration, the place where the story is told and the audience. Through this narrative work, they situate themselves in particular ways and make sense of the illness and the world around them. In this article, we explore the disnarrated, a style of narration that features events that do not happen, but are nonetheless referred to in the story. The aim of the article is to illustrate the additional layers of meaning that can be uncovered from illness stories when attention is paid to what did not happen, but, yet, is still part of the story. We draw from a qualitative study carried out with 17 parents whose children were diagnosed with cancer and were receiving medical care in Argentina. We carried out narrative interviews with the parents and participant-observation in hospital areas and the hotels where they resided during treatment. The analysis of the interview transcripts was carried out using a holistic understanding of the narratives and focusing on the identification of themes that appeared disnarrated. The fieldnotes from the observations were used to contextualize the narrative analysis. The disnarrated, in its many manifestations, produced a layer of analysis of parents' stories of treatment patterned by parents' desires, hopes and fears. The disnarrated was used by parents to discuss alternative care trajectories and express fears regarding what the future would bring for the child and family. The disnarrated is a useful analytical tool for examining illness stories as it points to storytellers’ views of what is acceptable or desirable in their world and their hopes and preferences for alternative realities.Fil: Vindrola Padros, Cecilia. University College London; Reino UnidoFil: Brage, Eugenia. Universidad de Buenos Aires. Facultad de Filosofía y Letras. Instituto de Ciencias Antropológicas; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentin

Advocating for carers: a qualitative study exploring the needs of UK carers of patients with an acoustic neuroma

Research on the impact of caring for patients with an acoustic neuroma is scarce. Findings from 12 interviews with primary carers of this patient population highlight six key themes: life disruption, support, well-being, the carer role, lessons learned and the impact of COVID-19. Carers need more practical information and emotional support, starting from the diagnosis stage through to recovery. Recommendations include routine carer assessments, early signposting to auxiliary services and information materials about recovery. This study contributes to the UK literature gap of this under-studied population and demonstrates the importance of carer assessments, as set out in the Carers Act 2014

The impact of maternity service restrictions related to COVID-19 on women's experiences of giving birth in England: A qualitative study

BACKGROUND: The COVID-19 pandemic led to significant changes in maternity service delivery in England, including: antenatal appointments being cancelled or held by phone; women having to attend antenatal scans alone; partners not being allowed to accompany women during labor; visitor restrictions on postnatal wards; and limited postnatal support. METHODS: We conducted semi-structured interviews with 46 women aged 18–45 who had low-risk pregnancies and gave birth to their babies using NHS services in England between 1st March 2020 and 1st March 2021. RESULTS: Our thematic analysis of interview data generated key themes: profound negative impacts of birth partners not being allowed to accompany women (including on emotional wellbeing, birth preferences and care-seeking choices); deep frustration about policy variation between trusts and inconsistent implementation of guidance; women being more concerned about the risk of giving birth alone than of COVID-19 infection; and women turning towards private care or delaying seeking NHS care so that they could have the birth experience they desired. The latter two results are, to the best of our knowledge, unique to this paper. CONCLUSION: Our participants reported significant negative affects to their emotional and physical wellbeing because of maternity service restrictions. Going forward, efforts are required by policymakers and health service providers to re-establish trust in NHS maternity care and ensure capacity to provide for potential shifts in birthplace preferences. Health systems strengthening efforts should prioritise protecting the rights of women to access high quality, person-centred care in the event of future health emergencies that strain NHS capacity

Through an intercultural lens: Grounding end of life interventions on “cultural difference” approaches

El artículo indaga en los modos en que el personal sanitario en contextos institucionales de atención en el final de vida se apropia de los discursos sobre las ?diferencias culturales de las poblaciones que atienden para basar sus intervenciones, interpretando qué es lo que los pacientes y sus familias necesitan. Sostiene que la apelación a discursos en clave culturalista aparece cuando los pacientes pertenecen a minorías étnicas, atravesando la comunicación de la enfermedad; la gestión de la atención y el cuidado y la espiritualidad, la religiosidad y los sistemas de creencias. Se trata de un análisis secundario basado en datos propios recabados en investigaciones realizadas en Servicios de Cuidados Paliativos, Oncología y Hospices de Argentina. Este fundamento culturalista de las intervenciones es atravesado por estereotipos y prenociones sobre las identidades culturales de poblaciones que ya tienen una alta carga de estigmatización en la sociedad y reproduce actitudes paternalistas y condescendientes. Concluye que negar o ignorar otras cosmovisiones es tan nocivo como reificarlas.The purpose of this article is to explore the ways in which healthcare professionals who provide care to patients during end of life use discourses based on arguments of “cultural differences” to justify their interventions and interpretations of patients’ and their families’ needs. The article argues that this reliance on cultural discourses appears when patients belong to ethnic minorities. These discourses shape the communication of the disease as well as the delivery of care and spiritual services. The article is based on the secondary analysis of data collected in palliative care, oncology and hospice services in Argentina. A conclusion of this study is that the “culturalist” nature of these interventions leads to stereotypes and preconceptions of the cultural identity of patient populations and reproduces paternalistic and condescending attitudes. Furthermore, these cultural discourses led to the reification and decontextualization of patients’ cosmovisions, producing harmful effects on populations who are already suffering from social stigma and confronting the end of life.Fil: Luxardo, Natalia. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de Buenos Aires; ArgentinaFil: Vindrola Padros, Cecilia. University College London; Estados Unido

Accessing health information during the COVID-19 pandemic: the experience of NHS maternity service users

Background The COVID-19 pandemic caused various disruptions to NHS maternity services in England. Changes were made to antenatal and postnatal care and the way that information was shared with maternity service users during these times. Fewer face-to-face appointments, increased virtual appointments and changes in guidance about the suitability of the COVID-19 vaccine without appropriate information sharing and evidence caused concern. Methods This study took a blended inductive-deductive approach to secondary data analysis using a population subset of 16 from a wider study that sought to understand the impact of COVID-19 on maternity services in England. Participants of this study were aged 28–44 and gave birth using NHS maternity services in England. The data were collected and coded using Rapid Analysis Procedure sheets, which generated key themes, which are used here to structure the results. Results Four main themes were generated from the analysis: 1) service restrictions to antenatal and postnatal appointments 2) access to information and changes to antenatal and postnatal care 3) inconsistencies in the implementation of government and NHS policy and 4) limited information about COVID-19 vaccine provided by NHS trusts and hesitancy in vaccine acceptance. Conclusion Participants experienced poor communication that affected their understanding of maternity service changes and there was limited general and maternal health information provided. Vaccine information was also inadequate, and participants expressed a desire for clearer guidance. The UK Government, Royal College of Obstetricians and Gynaecologists, and NHS must collaborate with maternity service users to ensure that there are evidence-based guidelines and policies that can be understood and standardised across all NHS maternity trusts

Évaluations anthropologiques rapides sur le terrain

This SSHAP Practical Approaches brief provides guidance on undertaking rapid anthropological assessments in the context of an epidemic. During an epidemic, rapid anthropological assessments are used to collect data with and from affected populations and public health officials to (a) understand key social, cultural, political, and economic dynamics; (b) identify relevant authorities and trusted leaders for message dissemination; (c) gather communities’ understanding of the disease and health decision-making processes; and (d) inform appropriate and effective response efforts.Cette synthèse des approches pratiques SSHAP fournit des orientations relatives à la réalisation d’évaluations anthropologiques rapides dans le contexte d’une épidémie. Lors d’une épidémie, des évaluations anthropologiques rapides sont utilisées pour collecter des données avec et auprès des populations affectées et des autorités publiques afin (a)de comprendre la dynamique sociale, culturelle, politique, et économique clé ; (b) d’identifier les autorités et les dirigeants dignes de confiance pertinents pour la diffusion de messages ; (c) de recueillir la compréhension des communautés de la maladie et des processus de prise de décision sanitaire ; et (d) d’informer des initiatives de riposte appropriées et efficaces.UNICEFUSAI

‘They could not see our eyes, they cannot see our faces, they do not know who we are and that is hard’: a qualitative interview study with staff caring for children and families in a UK specialist children’s hospital during the COVID-19 pandemic

OBJECTIVES: Despite lower rates of illness, morbidity and mortality associated with SARS-CoV-2 infection in children during the COVID-19 pandemic, their health and well-being has been significantly impacted. Emerging evidence indicates that this includes experiences of hospital-based care for them and their families. As part of a series of multisite research studies to undertake a rapid appraisal of perceptions of hospital staff, working during the pandemic, our study focused on clinical and non-clinical staff perceptions of the impact of COVID-19 on aspects of care delivery, preparedness and staffing specific to a specialist children's hospital. DESIGN: Qualitative study using a qualitative rapid appraisal design. Hospital staff participated in a telephone interview. We used a semistructured interview guide, and recorded and transcribed all interviews. Rapid Research Evaluation and Appraisal Lab Rapid Assessment Procedure sheets were used to share data; team-based analysis was facilitated using a framework approach. SETTING: Specialist children's hospital in London, UK. PARTICIPANTS: Thirty-six staff representing a range of roles within the hospital: 19 (53%) nurses, 7 (19%) medical staff and 10 (28%) other staff groups (including radiographers, managers, play staff, schoolteachers, domestic and portering staff and social workers). RESULTS: Three overarching themes relating to staff perceptions of the impact on children and families were identified, each containing subthemes: (1) same hospital but different for everyone, (2) families paid the price and (3) the digital world. They illustrated that providing care and treatment for children and families changed profoundly during the pandemic, particularly during lockdown periods. Adaptations to deliver clinical care, play, schooling and other therapies online were rapidly put into action; however, benefits were not universal or always inclusive. CONCLUSIONS: The disruption to a central principle of children's hospital care-the presence and involvement of families-was of critical concern to staff, suggesting a need for the specific impact of COVID-19 on children's services to be accounted for

A systematic review of de-escalation strategies for redeployed staff and repurposed facilities in COVID-19 intensive care units (ICUs) during the pandemic

Background: Intensive care units (ICUs) experienced a surge in patient cases during the COVID-19 pandemic. Demand was managed by redeploying healthcare workers (HCWs) and restructuring facilities. The rate of ICU admissions has subsided in many regions, with the redeployed workforce and facilities returning to usual functions. Previous literature has focused on the escalation of ICUs, limited research exists on de-escalation. This study aimed to identify the supportive and operational strategies used for the flexible de-escalation of ICUs in the context of COVID-19. Methods: The systematic review was developed by searching eight databases in April and November 2021. Papers discussing the return of redeployed staff and facilities and the training, wellbeing, and operational strategies were included. Excluded papers were non-English and unrelated to ICU de-escalation. Quality was assessed using the mixed methods appraisal tool (MMAT) and authority, accuracy, coverage, objectivity, date, and significance (AACODS) checklist, findings were developed using narrative synthesis and thematic analysis. Findings: Fifteen papers were included from six countries covering wellbeing and training themes encompassing; time off, psychological follow-up, gratitude, identification of training needs, missed training catch-up, and continuation of ICU and disaster management training. Operational themes included management of rotas, retainment of staff, division of ICU facilities, leadership changes, traffic light systems, and preparation for re-expansion. Interpretation: The review provided an overview of the landscape of de-escalation strategies that have taken place in six countries. Limited empirical evidence was available that evaluated the effectiveness of such strategies. Empirical and evaluative research from a larger array of countries is needed to be able to make global recommendations on ICU de-escalation practices

Accessing health information during the COVID-19 pandemic: the experience of NHS maternity service users

Abstract Background The COVID-19 pandemic caused various disruptions to NHS maternity services in England. Changes were made to antenatal and postnatal care and the way that information was shared with maternity service users during these times. Fewer face-to-face appointments, increased virtual appointments and changes in guidance about the suitability of the COVID-19 vaccine without appropriate information sharing and evidence caused concern. Methods This study took a blended inductive-deductive approach to secondary data analysis using a population subset of 16 from a wider study that sought to understand the impact of COVID-19 on maternity services in England. Participants of this study were aged 28–44 and gave birth using NHS maternity services in England. The data were collected and coded using Rapid Analysis Procedure sheets, which generated key themes, which are used here to structure the results. Results Four main themes were generated from the analysis: 1) service restrictions to antenatal and postnatal appointments 2) access to information and changes to antenatal and postnatal care 3) inconsistencies in the implementation of government and NHS policy and 4) limited information about COVID-19 vaccine provided by NHS trusts and hesitancy in vaccine acceptance. Conclusion Participants experienced poor communication that affected their understanding of maternity service changes and there was limited general and maternal health information provided. Vaccine information was also inadequate, and participants expressed a desire for clearer guidance. The UK Government, Royal College of Obstetricians and Gynaecologists, and NHS must collaborate with maternity service users to ensure that there are evidence-based guidelines and policies that can be understood and standardised across all NHS maternity trusts