Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study.

PURPOSE: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. METHODS: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. RESULTS: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. CONCLUSIONS: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration.

CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. METHODS: Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. RESULTS: Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. CONCLUSION: In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.

Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care.

Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of life in children and families. Method: A descriptive pre-post educational intervention study was carried out. The creation of a training program (with the term "school" used to denote this effort) strives to prepare caretakers to master the skills as well as provide support for the care of children with serious conditions requiring palliative through home-based initiatives. The analysis includes aspects of learning and satisfaction with the activity in a final sample of 14 families who had one child enrolled into a home-based palliative care program. Results: After the educational intervention in our school, the mean score of the theoretical evaluation was 9.14 points (SD 0.96), showing improvement with respect to the initial assessment, (mean diff. of +0.98 points). Although the analysis of all conceptual areas demonstrates a trend towards a positive impact of the intervention, feeding-related instruction saw the highest level of improvement, with a mean difference of +1.43 points. All enrolled parents expressed having a very positive experience during their participation in the educational program. Conclusions: The educational program showed a positive trend in the acquisition of knowledge and skills, resulting in a positive impact on the self-perception of their abilities. This psycho-educational space allowed them to share their experience of daily care for a child with complex needs with other families, showing them that they were not alone and that they could help each other.

Body Changes and Decreased Sexual Drive after Dialysis: A Qualitative Study on the Experiences of Women at an Ambulatory Dialysis Unit in Spain.

Chronic kidney disease (CKD) has considerable effects on the quality of life of patients, impairing everyday activities and leading to lifestyle changes, as well as affecting body image and intimate relationships. Our aim was to describe the experience of female patients with CKD at an ambulatory dialysis unit regarding body changes and sexuality. A qualitative phenomenological study exploring how 18 female patients, treated at the dialysis unit of a Spanish hospital, perceived their sexuality and intimate relationships. Data were collected using in-depth interviews, researcher field notes, and patients' personal letters. A thematic analysis was performed. Four main themes arose from the data describing the experience of how CKD impacts body changes and sexuality: (a) Accepting body changes, (b) The catheter, the fistula, and body image, (c) Experiencing a different sexuality, and (d) The catheter, the fistula, and sexuality. Patients experienced changes in their body, perceiving it as being bloated or deformed, together with overall decline. The catheter and/or the fistula triggered changes in the way the women dress in an attempt to hide port sites. Women experience sexuality changes, affecting sexual desire and satisfaction. The presence of catheters was found to be the most cumbersome during sexual acts.

The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study.

BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective. AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. DESIGN: A qualitative methodology was chosen. SETTING: The unit of pediatric palliative care at the Hospital Niño Jesús (Madrid, Spain). POPULATION: The inclusion criteria were: 1) parents of children, irrespective of their diagnosis; 2) integrated within the program of palliative care at the time of study; 3) aged between 0-18 years; 4) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included. METHODS: Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed. RESULTS: Three main themes were identified: 1) the meaning of physical rehabilitation to parents; 2) physical rehabilitation as an opportunity for patients to stay in their home environment; and 3) home-based physical rehabilitation as part of the families' social environment. CONCLUSIONS: The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.

La experiencia de ser portador de un catéter venoso central para hemodiálisis: estudio cualitativo / The experience of having a central venous catheter for hemodialysis: qualitative study

Introducción: La enfermedad renal crónica (ERC), produce una pérdida gradual e irreversible de la función de los riñones. Sus modalidades de tratamiento son invasivas y la existencia de un acceso vascular adecuado para hemodiálisis es fundamental para garantizar la supervivencia de los pacientes. Las diferencias de género existen con respecto a la epidemiología, la evolución y el pronóstico de las enfermedades crónicas del riñón, y pueden existir diferencias en las respuestas y perspectivas de las mujeres ante la ERC. Objetivos: Describir la experiencia de los pacientes con enfermedad renal crónica en hemodiálisis; su experiencia como portadores de un catéter venoso central (CVC), y si existen diferencias de género en las experiencias y vivencias de los portadores/as. Material y Método: Estudio cualitativo fenomenológico. Se aplicó un muestreo por propósito, se recogieron datos a través de entrevistas en profundidad, y se aplicó un análisis temático. Resultados: La enfermedad renal crónica supone un gran impacto en sus vidas. Todos los pacientes narran su preferencia sobre el CVC, son conscientes de su implicación en su tratamiento y en su expectativa vital, y se preocupan de su viabilidad y seguridad. Conclusiones: Existen diferencias de género, sobre todo en el impacto de la enfermedad y el tratamiento en el trabajo y en su nivel de autonomía y actividad

Introduction: Chronic Kidney Disease (CKD) is a disease that involves the gradual and irreversible loss of kidney function. The existence of adequate vascular access for hemodialysis is fundamental to guarantee a survival of the patients. Gender differences exist with respect to the epidemiology, evolution and prognosis of chronic kidney diseases. There are differences in the responses and perspectives of women on CKD. Objectives: To describe the experience of patients with CKD on hemodialysis; their experience as holders of a central venous catheter (CVC), and if there are gender differences in the responses and experiences of the holders. Material and Method: Qualitative phenomenological study was applied. Purposeful sampling was used and in-depth interviews was applied by researchers. Also, thematic analysis was used to qualitative data analysis. Results: CKD has a great impact on the patients’ lives. All patients report their preference about the use of CVC, are aware of the involvement in the treatment and their life expectancy, and are concerned about the viability and safety. Conclusions: There are gender differences, especially in the impact of the disease and treatment at work and in their level of autonomy and activity

Necesidades de cuidados paliativos en enfermos no oncológicos con enfermedad crónica avanzada: una revisión sistemática / Palliative care needs of non-cancer patients with advanced chronic disease: A systematic review

INTRODUCCIÓN: Los planes estratégicos de cuidados paliativos reconocen la importancia de detectar las necesidades del paciente no oncológico como parte de los criterios para acceder a los programas paliativos. OBJETIVO: Identificar las necesidades de atención paliativa en pacientes no oncológicos con enfermedad crónica avanzada incurable o terminal. METODOLOGÍA: Revisión sistemática de las bases de datos CINAHL, MEDLINE, Cochrane Library Plus, CUIDEN, Elsevier, LILACS y PsycINFO. Resultados y CONCLUSIONES: Se seleccionaron 22 artículos tras aplicar los criterios de inclusión y exclusión. Las necesidades de los pacientes afectaban a todas las esferas de la persona. Destaca la necesidad de soporte sanitario y atención paliativa, de información, control de síntomas, mantenimiento de la funcionalidad y cubrir necesidades emocionales y de soporte social. La depresión, la pérdida de dignidad y la culpabilidad son algunos de los problemas principales. Es primordial desarrollar protocolos que incluyan la valoración de las necesidades multidimensionales del paciente paliativo no oncológico que guíen a los profesionales para establecer intervenciones que aborden los problemas del paciente de forma integral

INTRODUCTION: A strategic plan of palliative care usually focuses on detecting the needs of non-cancer patients, in order for them to be admitted to palliative care programmes. OBJECTIVE: To identify the needs of non-cancer palliative care patients with advanced chronic disease. METHODS: Systematic review of CINAHL, MEDLINE, Cochrane Library Plus, CUIDEN, Elsevier, LILACS and PsycINFO databases. Results and CONCLUSIONS: Twenty-two papers were included which met the inclusion and exclusion criteria. Patients'needs affected their life in all fields. The review highlights the need for healthcare support and palliative care, for information about the disease and for effective symptom management, the need to maintain patients' functional capacity and to cover emotional and social support needs. Depression, guilt and loss of dignity were the main problems. It is essential to develop palliative protocols involving the evaluation of the non-cancer palliative patient's multi-dimensional needs to guide professionals to establish interventions that address the problems of the patient in a comprehensive manner

La intersubjetividad y su relevancia en los cuidados de Enfermería / The intersubjetivity and its relevance in nursing care

El objetivo de este artículo es reflexionar sobre los atributos del concepto de intersubjetividad y su relevancia en los cuidados de enfermería. Se propone una reflexión teórica sobre las relaciones intersubjetivas establecidas en la aplicación de cuidados de enfermería desde las aportaciones del interaccionismo simbólico y las ciencias de la enfermería. En el ámbito de enfermería las relaciones interpersonales forman parte de la realidad cotidiana, y emergen como un proceso intersubjetivo entre los actores sociales implicados en la acción cuidadora. Profundizar en la naturaleza del concepto de intersubjetividad aumentará la eficacia de la relación terapéutica que se establece entre el profesional de enfermería y el enfermo (AU)

The aim of this article is to reflect on the attributes of the intersubjectivity concept and its importance in nursing. From the contributions of the symbolic interactionism and the science of nursing, it proposes a theoretical reflection on the intersubjective relations established in the application of nursing care. Interpersonal relationships are a part of the everyday reality in the field of nursing, and they emerge as an intersubjective process between the social actors involved in the caring action. Delve into the nature of the intersubjectivity concept will increase the efficacy of the therapeutic relationship between the nursing professional and the patient (AU)

Negación de la muerte y su repercusión en los cuidados / Denial of death and its impact on carers

Introducción: Pocos estudios exploran con detalle los contextos hospitalarios donde los profesionales sanitarios comparten la experiencia, los significados, y las claves interpretativas de los procedimientos aplicados en los momentos próximos a la muerte del paciente. Objetivo: identificar la representación social de la muerte y los efectos que la institucionalización de la misma tienen sobre los médicos y enfermeras de un hospital de agudos. Métodos: Hemos realizado un total de 11 grupos de discusión y 15 entrevistas semidirigidas a profesionales que trabajan en UCI, Urgencias y Plantas de hospitalización de adultos, en un hospital de agudos. Resultados principales: el 100% de los profesionales opina que la UCI y las Urgencias no son los lugares más apropiados para morir, y que las Plantas de hospitalización no cuentan con espacios adecuados para ofrecer una muerte digna. Demandan formación en Cuidados Paliativos. Identifican distintos tipos de muerte según el servicio donde ocurra la muerte, así como prejuicios que las familias elaboran sobre su relación con la muerte. En los discursos de estos profesionales emerge con mucha fuerza la familia como objeto de cuidados y la importancia de la variable información en el proceso de la muerte. Conclusiones: En la estructura social hospitalaria, nuevas formas de organizar, hablar y pensaren la muerte disminuirían el sufrimiento y la soledad de los pacientes, de sus familias y de los propios sanitarios (AU)

Introduction: There are few studies that look in depth at hospital situations in which professional health workers share their knowledge, meanings and key concepts of the procedures applied when a patient is near death. Aim: To identify the social representation of death and the effects that its institutionalization has on physicians and nurses in an acute care hospital. Approach: We carried out 11 discussion groups and 15 semi-directed interviews with professional health workers of an Intensive Care Unit, an Emergency Room, and various adult Stay Units in an Acute Care Hospital. Main results: All health workers think that Intensive Care Units and Emergency Rooms are not the most appropriate places to die, and that Hospital Stay Units lack suitable space for adignified death. They demand more training in Palliative Care, and they identify different types of death depending on the unit where it occurs, and also to identify the prejudices family members have about death. In these professional health workers’ discourses, the family strongly emerges as an object of care, as well as the importance that information has in the process of dying. Conclusions: New ways of organizing, talking and thinking about death in the social structure of hospitals could decrease the solitude and suffering that patients, family members and health workers go through when dealing with death (AU)