[Perceptions of health care professionals about end-of-life care, obstacles and ethical dilemmas in hospitals, primary care and nursing homes.] / Percepciones de los profesionales sobre la atención prestada, obstáculos y dilemas éticos relacionados con el final de la vida en hospitales, centros de Atención Primaria y residencias de ancianos.

BACKGROUND: This study compares the perceptions of physicians and nurses regarding professional practice, perceived obstacles and ethical dilemmas in end-of-life care in primary care (PC), hospitals and nursing homes (NH). METHODS: Descriptive, cross-sectional and multicentre study. Intentional sampling of physicians and nurses with more than four months professional practice from four hospitals, five PC centres and twenty-nine NH in Granada was carried out. An ad hoc questionnaire was developed to assess perception of professional practice in eight dimensions (structure and processes of care, physical, psychological, social, spiritual, cultural, ethical aspects and care for the dying), frequency of ethical dilemmas, and obstacles to optimum care. Scores of different settings were compared using the ANOVA test and post hoc analysis. RESULTS: A total of 378 professionals participated, 215 (56.9%) from hospitals, 97 (25.7%) from PC and 66 (17.5%) from NH. NH professionals were older and had more professional experience than those from PC and hospitals, and they also rated both the institution and their own professional practice significantly better (p<0.01) than other professionals with respect to the dimensions of structure and processes of care, physical, psychological, social, spiritual, cultural aspects and care for the dying. Psychological and ethical aspects were the worst valued in all settings, with no differences regarding ethical aspects. Fewer ethical dilemmas were identified by PC professionals, while NH professionals perceived greater obstacles to end-of-life care in relation to other settings. CONCLUSION: Primary care and hospitalization presented similar results on the perception of end-of-life care, and lower results than those of nursing homes, although in these centres more ethical dilemmas and more obstacles were identified.

Interventions and decision-making at the end of life: the effect of establishing the terminal illness situation.

BACKGROUND: Many 'routine' interventions performed in hospital rooms have repercussions for the comfort of the patient, and the decision to perform them should depend on whether the patient is identified as in a terminal phase. The aim of this study is to analyse the health interventions performed and decisions made in the last days of life in patients with advanced oncological and non-oncological illness to ascertain whether identifying the patient's terminal illness situation has any effect on these decisions. METHODS: Retrospective study of the clinical histories of deceased patients in four hospitals in Granada (Spain) in 2010. Clinical histories corresponding to the last three months of the patient's life were reviewed. RESULTS: A total of 202 clinical histories were reviewed, 60 % of which were those of non-oncology patients. Opioid prescriptions (58.4 %), palliative sedation (35.1 %) and Do Not Resuscitate (DNR) orders (34.7 %) were the decisions most often reflected in the histories, and differences in these decisions were found between patients registered as terminal and those who were not registered as terminal. The most frequent interventions in the final 14 days and 48 h were parenteral hydration (96-83 %), peripheral venous catheter (90.1-82 %) and oxygen therapy (81.2-70.5 %). There were statistically significant differences between the patients who were registered as terminal and those not registered as terminal in the number of interventions applied in the final 14 days and 48 h (p = 0.01-p = 0.00) and in many of the described treatments. CONCLUSION: The recognition of a patient's terminal status in the clinical history conditions the decisions that are made and is generally associated with a lower number of interventions.

Influencia del ámbito, rural o urbano, en la percepción de los apoyos y las necesidades de las personas cuidadoras en el hospital / Influence of environment, rural or urban, in the perception of the supports and needs of caregivers in hospitals

Fundamento. Tras implementar un Plan Funcional con medidas de apoyo a personas cuidadoras en dos hospitales de Granada, se analizan la eficacia y el efecto del medio en la percepción y las necesidades de la persona cuidadora. Material y método. Se realizó un estudio cualitativo, fenomenológico, a través de entrevistas semi-estructuradas. Participaron 45 personas cuidadoras incluidas en el Plan Funcional. Se midieron además apoyo social percibido, función familiar y nivel de ansiedad mediante los cuestionarios Duke-unc, Apgar familiar y Escala de Goldberg, respectivamente. El análisis de los datos cualitativos se llevó a cabo mediante codificación abierta, axial y selectiva, y los cuestionarios mediante estadística descriptiva .Resultado. Las personas cuidadoras del ámbito urbano valoraron más los apoyos que les facilitaban la vida en el hospital y los apoyos sociales para el domicilio y las del ámbito rural los apoyos hospitalarios orientados a educación en cuidados para cuando estuviesen en su domicilio, todos ellos vinculados a la personalización de cuidados. Las alteraciones personales por el cuidado están presentes en ambos ámbitos aunque difieren en las repercusiones psíquicas y en el tipo de fármacos y su consumo. Existen diferencias en cuanto a los apoyos necesarios y las dificultades encontradas. Conclusiones. El ámbito donde habitualmente viven las personas cuidadoras condiciona sus percepciones del cuidado y algunas de sus necesidades en el hospital. Se deberán revisar las medidas del Plan Funcional cuestionadas, redefinir algunas prioridades e incluir medidas adicionales en función de la situación familiar de las personas cuidadoras (AU)

Background. After the Functional Plan was implemented with support measures for caregivers in hospitals of Granada (Spain), the effectiveness and impact of environment on the perception and needs of caregivers was analysed. Materials and methods. A qualitative, phenomenological study was made through semi-structured interviews. A total of 45 caregivers included in the Functional Plan participated. In addition, perceived social support, family functioning, and the anxiety level was measured, respectively, through the Duke-UNC, Apgar Family, and Goldberg Scale questionnaires. The data were qualitatively analysed by open, axial, and selective coding, and the questionnaires by descriptive statistics. Results. The caregivers of the urban setting valued more the support that made their life easier in the hospital and the social support at home, while caregivers in rural settings valued the hospital support oriented towards education in care for life after returning home, all linked to the personalization of care. The personal disturbances due to care occurred in all the settings, although differences appeared in psychic repercussions and in the type of drugs and their consumption. There were differences in terms of support needed and the difficulties encountered. Conclusions. The setting where caregivers live determine their perceptions of the care and some of their needs in the hospital. The measures questioned in the Functional Plan should be reviewed and some priorities should be redefined, including additional measures, depending on the family situation of the caregivers (AU)

Suffering indicators in terminally ill children from the parental perspective.

PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their perspectives on suffering, in order to provide initial understanding from which to develop observational indicators and further research. METHODS: Qualitative descriptive study with semi-structured interviews made "ad hoc". Selection through deliberate sampling of mothers and fathers of hospitalised children (0-16 years old) with a terminal illness in Granada (Spain). KEY RESULTS: 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy, and anger towards their parents and the professionals. The isolation from their natural environment, the uncertainty towards the future, and the anticipation of pain caused suffering in children. The pain is experienced as an assault that their parents allow to occur. CONCLUSIONS: The analysis of the interview with the parents about their perception of their ill children's suffering at the end of their lives is a valuable source of information to consider supportive interventions for children and parents in health care settings. An outline summary of the assessed aspects of suffering, the indicators and aspects for health professional consideration is proposed.

Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo / Experiences and changes in parents of children with infant cerebral palsy: a qualitative study

Fundamento. El diagnóstico de parálisis cerebral infantil (PCI) supone un evento de carácter traumático que puede provocar una multitud de efectos y cambios en el entorno familiar. Se pretende conocer cuáles son las principales dificultades que encuentran los padres en el proceso de parentalidad, especialmente en los primeros momentos tras el diagnóstico. Método. Se realizó un estudio fenomenológico de carácter cualitativo a través de entrevistas semi-estructuradas. Participaron 16 padres y madres cuyos hijos estaban diagnosticados de PCI. El análisis de los datos se llevó a cabo con el software Atlas.ti6.2 a través de una codificación abierta. Resultados. La recepción de la noticia es percibida como un acontecimiento inesperado que obliga a restructurar las expectativas con respecto a su hijo. La forma de relacionarse con el hijo con PCI es diferente a la que se establece con otros niños, centrándose sobre todo en las posibilidades de mejora y en la evolución de su hijo en el futuro. Se observan cambios en diferentes aspectos de la vida de estos padres como el tiempo, la situación económica y laboral, así como las relaciones de pareja. Conclusiones. En la atención a niños con PCI es necesario incorporar y tomar en cuenta la problemática de los padres, especialmente en los primeros momentos del diagnóstico. El proceso de crianza de un hijo con PCI conlleva un gran número de cambios en la dinámica familiar por lo que se necesita abordarlos mediante una perspectiva global (AU)

Background. The diagnosis of infant cerebral palsy (ICP) is a traumatic event that can provoke multiple effects and changes in the family. The aim of the study is to discover the difficulties that parents face in the process of parenting, especially in the initial period following diagnosis. Methods. A qualitative study was carried out through semi-structured interviews. Sixteen mothers and fathers whose children were diagnosed with cerebral palsy participated in the study. Data analysis was performed with Atlas.ti 6.2 software following a strategy of open coding. Results. The reception of the diagnosis is perceived as an unexpected event that makes parents change expectations and hopes related to their children. The mode of relation with the child with ICP is different from that with other children as parents are more focused on the possibility of improvement and the future evolution of their child. Changes in different aspects of the lives of these parents are shown, such as demands on time, their economic and labour situation, as well as the relationship of the couple. Conclusions. In providing care for children with cerebral palsy it is necessary to take the problems of the parents into account, especially in the initial period after diagnosis. The process of parenting a child with cerebral palsy entails many changes in the family so a global perspective is needed to organize interventions (AU)

[Influence of rural or urban environment on perception of the supports and needs of caregivers in hospitals]. / Influencia del ámbito, rural o urbano, en la percepción de los apoyos y las necesidades de las personas cuidadoras en el hospital.

BACKGROUND: After the Functional Plan was implemented with support measures for caregivers in hospitals of Granada (Spain), the effectiveness and impact of environment on the perception and needs of caregivers was analysed. MATERIALS AND METHODS: A qualitative, phenomenological study was made through semi-structured interviews. A total of 45 caregivers included in the Functional Plan took part. In addition, perceived social support, family functioning, and anxiety level were measured, respectively, through the Duke-UNC, Apgar Family, and Goldberg Scale questionnaires. The data were qualitatively analysed by open, axial, and selective coding, and the questionnaires by descriptive statistics. RESULTS: The caregivers of the urban setting valued the support that made their life easier in hospital and the social support received at home more highly, while caregivers in rural settings valued hospital support oriented towards education in care for life after returning home, all linked to the personalization of care. Personal disturbances due to care occurred in all settings, although differences appeared in psychic repercussions and in the type of drugs and their consumption. There were differences in terms of support needed and the difficulties encountered. CONCLUSIONS: The setting where caregivers live determines their perceptions of care and some of their needs in the hospital. The measures questioned in the Functional Plan should be reviewed and some priorities should be redefined, including additional measures, depending on the family situation of the caregivers.

Estudio preliminar de las características del intento de suicidio en la provincia de Granada / Preliminary study of the characteristics of attempted suicide in the province of Granada

Fundamento. Los suicidios en España representan un número de muertes mayor que otras muertes traumáticas. Los comportamientos suicidas no mortales se producen en una proporción mayor que los que tienen fin mortal. Las causas de esta conducta son múltiples y es importante conocerlas para poder prevenirlas. El objetivo del presente trabajo es describir las características del comportamiento suicida no mortal en la provincia de Granada. Método. Estudio descriptivo retrospectivo de las características del comportamiento suicida no mortal en Granada durante los años 2008 y 2009, según la base de datos del Servicio Provincial 061 de Granada. La muestra ha sido todas las demandas realizadas a este servicio en las que en el motivo literal de la alerta figuraron los términos suicidio, autolesióno amenaza suicida. El análisis estadístico se ha realizado con el programa SPSS 15.0. Se analizó la variable conducta suicidano mortal respecto de las variables independientes: sexo, edad, mes, día de la semana, franja horaria, distrito sanitario, resolución de la demanda (prioridad asignada) y reintentos. Resultados. Se analizaron en total 535 demandas tipificadas como lesión autoinflingida intencionalmente por medios no especificados. Se han encontrado diferencias estadísticamente significativas al comparar los datos de los dos años respecto del mes elegido, y en la relación entre rango deedad y franja horaria de los intentos de suicidio. Conclusiones. La caracterización de los intentos de suicidioen nuestra provincia ofrece información relevante, a pesar de sus limitaciones, y ayuda a determinar alguno de los parámetros en los que habrá que sustentar un futuro programa de intervención psicosocial para la prevención de estas conductas ajustado a los perfiles específicos de nuestra población (AU)

Background. Suicides account for a number of deaths that is higher than other traumatic deaths in Spain. Non-fatal suicidal behaviour occurs in a greater proportion than such behaviour with a deadly outcome. There are many causes for this behaviour and it is important to become familiar with them if it is to be prevented. The aim of this article is to describe the characteristics of non-mortal suicidal behaviour in the province of Granada. Method. A retrospective descriptive study of the characteristics of non-mortal suicidal behaviour in Granada during the years 2008 and 2009, according to the data base of the Provincial 061 Service in Granada. The sample includes the demands made to this service in which the literal reason for the alert included the terms: suicide, self-harm or the threat of suicide. The statistical analysis was done with the SPSS 15.0 program. We analyzed the variable non-mortal suicidal behaviour with respect to the independent variables: sex, age, month, day of the week, time slot, health district, resolution of the demand (assigned priority) and fur therattempts. Results. In total we analyzed 535 demands typified as intentional self-injury by un specified means. Statistically significant differences were found when comparing the data for the two years with respect to the month chosen, and in the relationship between age range and time slot of the suicide attempts. Conclusions. Despite its limitations, the characterization of suicidal behaviour in our province offers essential information, and could be useful in designing and developing aprogram of psychosocial intervention for the prevention of suicidal behaviour adjusted to the specific profiles of our population (AU)

Dos procesos de fin de vida. Cuando la intervención de los profesionales marca la diferencia / Two end-of-life processes. When professional intervention makes all the difference

Introducción. Desde el punto de vista de la medicina curativa actual la muerte es una consecuencia indeseable, que no debe contemplarse como una posibilidad. El desarrollo de la medicina paliativa está cambiando estas mentalidades, aunque persisten aún muchos problemas organizativos. Metodología. En este artículo presentamos dos procesos de fin de vida: en una unidad de cuidados paliativos y en unidades hospitalarias convencionales. Los datos se recogieron a través de familiares trascurrido un mes desde su fallecimiento. Los datos se analizaron cualitativamente mediante análisis narrativo. Resultados. El conocimiento u omisión del diagnóstico y del pronóstico marca la diferencia entre los dos procesos y el posterior duelo de la familia. Discusión. El conocimiento de la cercanía de la propia muerte permite al paciente y a la familia elaborar estrategias de duelo anticipado y contribuye a afianzar la sensación de "auto-control". El desconocimiento de dicho diagnóstico se traduce en un esfuerzo infructuoso por la alternativa curativa. Los cuidados paliativos han demostrado que cuando las necesidades físicas y emocionales de los procesos de fin de vida son tenidas en cuenta disminuye la frustración en el paciente y la familia (AU)

Introduction. From the point of view of modern curative medicine, death is an undesirable consequence which should not be considered as a possibility. Although the development of palliative medicine is changing those attitudes, many organisational problems still persist. Methodology. In this article we present two end-of-life processes: one in a palliative care unit and one in conventional hospital units. Data were collected from family members a month after the patients' deaths. Data were qualitatively analysed using narrative analysis. Results. The knowledge or omission of diagnostic and prognostic makes all the difference in both processes and in the subsequent families' grief. Discussion. Being aware of the proximity of his death allows the patient and his family to elaborate advanced bereavement strategies and to keep a feeling of "self-control". Not knowing such a diagnostic is translated into a fruitless effort within the curative alternative. Palliative care has proven that when physical and emotional needs are taken into account in an end-of-life process, the patient's and family's frustration decrease (AU)

Condicionamientos de la sobreactuación terapéutica. Papel de la familia / No disponible

Objetivos: identificar dificultades y obstáculos de los profesionales médicos y enfermeros en relación con la sobreactuación terapéutica; explorar la diversidad de experiencias. Método: estudio cualitativo de tipo fenomenológico basado en entrevistas individuales a profesionales médicos y enfermeros que trabajan con enfermos terminales y familia, en hospitales y centros de salud de zonas urbanas y rurales de Granada y provincia, grabadas y transcritas, y asistidos en el análisis de la información por el software Atlas.tí, con una muestra de 42 entrevistas (20 médicos, 21 enfermeros y 1 psicólogo) sobre 48, y 6 rechazadas por no cumplir criterios de triangulación de la información. Resultados: aunque los profesionales son contrarios a alargar la agonía de los enfermos admiten que la presión que soportan de las familias les lleva a intervenir. Aparecen diferencias de posicionamiento y matiz entre profesionales en hospitales y en centros de salud, y entre profesionales médicos y enfermeros, sin embargo, para todos ellos, el trabajo con la familia es un problema. Conclusiones: desde la perspectiva del profesional, las demandas familiares condicionan la presencia de sobreactuación. Ausente la consideración de los deseos y opiniones de los pacientes en la toma de decisiones. Dificultades para reconocer la situación de enfermedad terminal y para transmitirla, así como identificar enfermo terminal y enfermo agónico explican comportamientos sobreactuantes. El trabajo con los familiares para acordar y consensuar medidas terapéuticas requiere un entorno de relación terapéutica que no se puede improvisar en el último momento (AU)

Objetive: to identify the difficulties and obstacles that professional doctors and nurses face in relation to therapeutic obstinacy. To explore experience diversity. Method: qualitative phenomenological research based on individual interviews (recorded and transcribed) to doctors and nurses working with terminally ill patients and their families in hospitals and health centers in the suburbs and rural areas of Granada and its province. The analysis of data has been supported by the Atlas.tí software. The sample consists of 48 interviews, 42 of them to 20 doctors, 21 nurses, and 1 psychologist; the remaining 6 were rejected because of unmet criteria for information triangulation. Results: despite the fact that professionals are opposed to prolonging the agony of patients, they recognize that pressure from family demands eventually leads them to intervene. Attitudes and stance show differences between professionals in hospitals and health centers, and between doctors and nurses. Nevertheless, working with patient families is a problem. Conclusions: from a professional’s point of view, family requests condition the presence of therapeutic obstinacy. Patient wishes and opinions are not considered when a decision is to be made. There are difficulties in recognizing and reporting on illness status, as well as difficulties in identifying a terminally ill patient from an agonizing one. These difficulties explain obstinate behaviors. Working with families to arrange for therapeutic decisions requires a therapeutic relationship environment, which cannot be improvised at the last minute (AU)

Adherencia terapéutica en hipertensos. Estudio cualitativo / Treatment adherence of hypertensive patients: a qualitative study

La prevalencia de la hipertensión en España se sitúa en torno al 25% de la población adulta. Los profesionales de la salud disponen de un amplio arsenal terapéutico y conocen los criterios higiénico-dietéticos que mantendrían los niveles arteriales dentro de la normalidad. La falta de observancia de la pauta terapéutica es común en todo proceso crónico. En el caso de la hipertensión arterial las cifras de no cumplidores alcanzan límites realmente preocupantes, cerca del 40% para el tratamiento farmacológico y entre el 60-90% en las medidas higiénico-dietéticas. Por ahora, se sabe poco sobre las opiniones y expectativas que los pacientes tienen sobre la hipertensión y su tratamiento. Para tratar esta cuestión, hemos diseñado un estudio cualitativo basado en la técnica de los grupos focales. El objetivo ha sido identificar desde la perspectiva de los usuarios las dificultades del cumplimiento, así como los factores relacionados con este fenómeno. Constatamos la dificultad a la hora de seguir las prescripciones médicas, en gran medida porque no se sienten tratados de forma individualizada para establecer el tratamiento, las medidas adecuadas y el modo de llevarlo a cabo. Consideramos que es fundamental optimizar la relación del profesional de la salud con el paciente

The prevalence of hypertension among adults in Spain reaches around 25%. Health professionals have many therapeutic means at their disposal and know all hygienic and dietetic measures needed to keep arterial levels within normality. Non-adherence to therapy is a common observable fact in all chronic processes. Concerning arterial hypertension, non-adherence percentages reach alarming levels: nearly 40% non-adherence to drug treatment and between 60-90% non-adherence to hygienic and dietetic measures. So far, little is known about patients' expectations and opinions about hypertension and its treatment. To deal with this subject, a qualitative study was designed based on the focal groups' technique. The aim was to identify adherence difficulties according to patients, as well as other factors related to this phenomenon. We have detected treatment adherence difficulties, mainly due to a lack of individual treatments, measures and application methods. We believe it is essential for health professionals to optimize their relations with their patients

[Nursing, family, and terminally ill patients]. / Enfermería, familia y paciente terminal.

The authors publish data which refer to a study carried out on a sample of 350 nursing professionals in the Granada hospital network, subdivided into two groups: a risk group (GR) and a non-risk group (NR). The authors analyze the results obtained relative to the presence of stress in situations of agony and death, as well as the family as an object for professional treatment in both study groups.