Signification de l’expérience de la phase palliative du cancer, pour des personnes atteintes et leurs familles des Baléares, alors que le pronostic leur est connu

Le cancer est considéré comme l’une des principales causes de morbidité et de mortalité et, en Espagne, représente à lui seul 25% du taux de mortalité globale. Lorsqu’une personne et sa famille font l’expérience de traverser la phase avancée du cancer, celles-ci vivent un grand choc émotionnel où les souffrances physique, psychique et spirituelle peuvent être présentes. L’information donnée par les professionnels de la santé aux membres de la famille, incluant la personne atteinte, en ce qui concerne le diagnostic et le pronostic du cancer est maintenant plus fréquente dans le contexte méditerranéen. Il n'est pas clair, toutefois, comment cette nouvelle approche est vécue par les familles. C’est pourquoi, le but de cette recherche qualitative de type phénoménologique est d’explorer la signification de l’expérience de familles dont l’un des membres est atteint d’un cancer terminal, alors que tous connaissent le pronostic de la maladie. Les résultats obtenus reposent sur l’analyse en profondeur d’entrevues réalisées auprès de quatre couples. L’analyse des données, à l’aide de la méthode phénoménologique de Giorgi (1997), fait émerger deux thèmes centraux caractérisant la signification de cette expérience de la phase palliative de cancer, alors que l’information sur le mauvais pronostic est connue tant par la personne atteinte que sa famille. Le premier thème central est celui de vivre intensément la perte de la vie rêvée et comporte le vécu suite au choc du pronostic fatal, le fait de vivre constamment des sentiments et des émotions liés à différentes pertes telles que la tristesse, la frustration, l’inquiétude et l’incertitude, et l’espoir de ne pas souffrir. Le deuxième thème central qui ressort est le développement de stratégies par les couples participants afin de rendre leur vie plus supportable. Ces stratégies sont les suivantes : accueillir l’information et le soutien professionnel, retrouver une certaine normalité dans la vie quotidienne, profiter de la vie, recevoir l’aide de la famille et des amis, maintenir une communication cognitive et instrumentale ouverte, se protéger au niveau émotionnel et envisager l’avenir sans la personne aimée. Tous ces éléments, dans le contexte individuel de vie de chaque famille transforment chacun de ces vécus en une expérience unique qui doit être comprise et respectée comme telle par tous les professionnels de la santé impliqués. Les connaissances développées par cette recherche permettront aux infirmières de mieux comprendre l’expérience de la phase palliative du cancer pour des couples dont le diagnostic et le pronostic fatal sont connus par tous, ceci afin d’améliorer leur qualité des soins. Afin de poursuivre le développement du savoir infirmier, il est recommandé de poursuivre des études afin d’explorer plus en profondeur la communication au sein des couples.Nowadays cancer constitutes one of the most prevalent morbilty and mortality causes, representing 25% of the total mortality rate in the Spanish context. When patients and their families live through the palliative phase of cancer, they experience a great emotional shock where physical, psychological and spiritual suffering may come at play. Having health professionals inform all family members including the patient about cancer diagnosis and related prognosis is a more and more common situation encountered within Mediterranean contexts. Nevertheless, it is not yet clear how this new approach to information disclosure is experienced by family members. Thus, the goal of this phenomenological research study was to explore and further understand the meaning these families assign to the experience of living through the terminal phase of cancer of a loved one, while being all informed about the related prognosis. The findings of this study rely on in-depth interviews with four couples (patient and spouse). The data analysis, developed upon the guidance provided by Giorgi’s (1997) phenomenological method, presents two central themes that characterize the meaning of the experience of the palliative phase of cancer, when information on the poor prognosis is known both by the patient and his/her family. The first theme concerns the fact of intensively living the loss of a dreamed-of life. This first theme is mainly develop around the lived experience regarding the shock associated with the fatal prognosis, the constant feelings and emotions such as sadness, frustration, worry and uncertainty, and related to different losses, as well as the hope for an absence of suffering. The second main theme is related to the strategies developed by these couples as they face the situation and try to make their lives as manageable as possible: to gather health professionals’ information and support, to search for a certain “normality” in their everyday life, to enjoy life, to get help from relatives and friends, to keep an open cognitive and instrumental communication dynamics, to emotionally protect themselves and to imagine and construct a future time where the loved one will no longer be present. All these elements of each family’s individual contexts transform their lived experiences into unique experiences that must be understood and respected as such by all health professionals involved. Knowledge developed by this research study will allow nurses to better understand the experience of the palliative phase of cancer for couples sharing the information on diagnosis and prognosis, aiming at improving their quality of care. Several suggestions, related the development of sounder nursing knowledge, evolve from these results in regards to the need to develop later studies that would further explore communication in the context of couple dynamics

Knowledge and attitudes of primary healthcare patients regarding population-based screening for colorectal cancer

<p>Abstract</p> <p>Background</p> <p>The aim of this study was to assess the extent of knowledge of primary health care (PHC) patients about colorectal cancer (CRC), their attitudes toward population-based screening for this disease and gender differences in these respects.</p> <p>Methods</p> <p>A questionnaire-based survey of PHC patients in the Balearic Islands and some districts of the metropolitan area of Barcelona was conducted. Individuals between 50 and 69 years of age with no history of CRC were interviewed at their PHC centers.</p> <p>Results</p> <p>We analyzed the results of 625 questionnaires, 58% of which were completed by women. Most patients believed that cancer diagnosis before symptom onset improved the chance of survival. More women than men knew the main symptoms of CRC. A total of 88.8% of patients reported that they would perform the fecal occult blood test (FOBT) for CRC screening if so requested by PHC doctors or nurses. If the FOBT was positive and a colonoscopy was offered, 84.9% of participants indicated that they would undergo the procedure, and no significant difference by gender was apparent. Fear of having cancer was the main reason for performance of an FOBT, and also for not performing the FOBT, especially in women. Fear of pain was the main reason for not wishing to undergo colonoscopy. Factors associated with reluctance to perform the FOBT were: <b><it>(i) </it></b>the idea that that many forms of cancer can be prevented by exercise and, <b><it>(ii) </it></b>a reluctance to undergo colonoscopy if an FOBT was positive. Factors associated with reluctance to undergo colonoscopy were: <b><it>(i) </it></b>residence in Barcelona, <b><it>(ii) </it></b>ignorance of the fact that early diagnosis of CRC is associated with better prognosis, <b><it>(iii) </it></b>no previous history of colonoscopy, and <b><it>(iv) </it></b>no intention to perform the FOBT for CRC screening.</p> <p>Conclusion</p> <p>We identified gaps in knowledge about CRC and prevention thereof in PHC patients from the Balearic Islands and the Barcelona region of Spain. If fears about CRC screening, and CRC per se, are addressed, and if it is emphasized that CRC is preventable, participation in CRC screening programs may improve.</p

Impact of the COVID-19 pandemic on the self-care and health condition of the older adults. CUIDAMOS+75. A mixed methods study protocol

AimsTo assess the impact of the COVID-19 pandemic on the health condition of people ≥75 years of age and on their family caregivers in Spain.DesignMulticentric, mixed method concurrent study.MethodsThis work, which will be conducted within the primary care setting in 11 administrative regions of Spain, will include three coordinated studies with different methodologies. The first is a population-based cohort study that will use real-life data to analyze the rates and evolution of health needs, care provision, and services utilization before, during, and after the pandemic. The second is a prospective cohort study with 18 months of follow-up that will evaluate the impact of COVID-19 disease on mortality, frailty, functional and cognitive capacity, and quality of life of the participants. Finally, the third will be a qualitative study with a critical social approach to understand and interpret the social, political, and economic dimensions associated with the use of health services during the pandemic. We have followed the SPIRIT Checklist to address trial protocol and related documents. This research is being funded by the Instituto de Salud Carlos III since 2021 and was approved by its ethics committee (June 2022).DiscussionThe study findings will reveal the long-term impact of the COVID-19 pandemic on the older adults and their caregivers. This information will serve policymakers to adapt health policies to the needs of this population in situations of maximum stress, such as that produced by the COVID-19 pandemic.Trial RegistrationIdentifier: NCT05249868 [ClinicalTrials.gov]

RedICS: Un espacio de encuentro para la investigación cualitativa en salud

Curriculum: Coordinadoras de RedICS, en nombre de la Unidad de coordinación y desarrollo de la Investigación en Enfermería (Investén-isciii)

Continuation versus discontinuation of treatment for severe dementia: randomized, pragmatic, open-label, clinical trial to evaluate the efficacy of continuing drug treatment in patients with severe dementia (STOP-DEM)

Abstract Background Previous observational studies and clinical trials have shown that cholinesterase inhibitors (with or without memantine) provide benefit for patients with mild-to-moderate Alzheimer’s disease. However, the impact of treatment continuation after progression to severe disease is unknown. The main aim of this study is to evaluate the effect and safety of continuing treatment with ChEIs (with or without memantine) for patients with severe dementia. Methods This randomized, pragmatic, open-label clinical trial with blinded evaluators will evaluate the efficacy of continuing drug treatment in patients with advanced dementia. A total of 302 community-dwelling patients with severe dementia, Alzheimer’s disease, with or without a coexisting diagnosis of vascular dementia, and a score of 10 or less on the Mini-Mental State Examination who received previous treatment with a cholinesterase inhibitor (with or without memantine) for at least 3 months, will be randomized to continue or discontinue drug treatment. Follow-up will be 12 months or until the primary endpoint is achieved. The primary endpoint is entry into institutional care and progression of disability, defined as a loss of 2 of 4 basic functions, or 6 of 11 instrumental functions, according to the Bristol Activities of Daily Living Scale at 12 months. The secondary outcomes are patient changes in functional and cognitive state, quality of life, and caregiver burden. Discussion We expect that the results of our study will allow to identify if there is clinical relevant impact for patients and caregivers between maintaining or halting pharmacological treatment. Trial registration The study was prospectively registered in the REec (2017–000042-22) on May 11 2017 and ID ISRCTN12134230 on February 25 2019

Perspectives and Views of Primary Care Professionals Regarding DiabeText, a New mHealth Intervention to Support Adherence to Antidiabetic Medication in Spain: A Qualitative Study

Background: Antidiabetic medication is effective in preventing diabetes-related complications. However, 40% of type 2 diabetic patients do not adhere to their medication regimes adequately. Brief text messages represent a promising approach to support medication adherence. The aim of this study was to explore the perspectives of primary care professionals (PCPs) concerning the DiabeText intervention, a new text messaging intervention to be developed to support medication adherence in people with type 2 diabetes (T2D) in Mallorca, Spain. Methods: We conducted four focus groups (n = 28) and eight semi-structured interviews with doctors and nurses. Data collection and analysis were carried out by researchers independently following Braun and Clark&rsquo;s methodology. Results: Three main themes were identified: (1) text messaging interventions have the potential to effectively support diabetes self-management; (2) involving PCPs in the intervention would facilitate its design and implementation; (3) obtaining evidence supporting the cost-effectiveness is a key prerequisite for large-scale implementation of the intervention. PCPs identified barriers and enablers of the design and implementation of the intervention and made suggestions about the content and format of the text messages. Conclusion: The DiabeText intervention is perceived as useful and acceptable by PCPs provided its cost-effectiveness

Calidad de vida de trabajadoras inmigrantes latinoamericanas como cuidadoras en España

Objetivo: Describir la calidad de vida percibida en trabajadoras latinoamericanas como cuidadoras en España y sus diferencias en relación a ciertas variables que les son comunes. Métodos: Se utilizó el cuestionario SF-36 para la medición de la calidad de vida percibida en 517 mujeres de Baleares, Cataluña, País Vasco, Canarias y Madrid. Se estudiaron diversas variables relacionadas con su perfil sociodemográfico y proceso migratorio, usando la prueba t de Student, el test ANOVA y modelos de regresión lineal. Resultados: Obtuvieron muy bajas puntuaciones en las dimensiones de rol físico y rol emocional. El trabajo como interna, la falta de contrato, las múltiples tareas, el estatus irregular y la edad más joven se relacionaron con una peor calidad de vida dentro del grupo. Conclusiones: Las condiciones laborales y los factores ligados al proceso migratorio son determinantes para explicar la vulnerabilidad de estas mujeres