ABSTRACT
Objetivos: Describir la calidad de vida y sobrecarga de las cuidadoras familiares de pacientes oncológicos al inicio de los cuidados paliativos. Método: Estudio descriptivo transversal en la cohorte CUIDPACOSTASOL de cuidadoras familiares de pacientes con cáncer en fase paliativa incluidos entre febrero de 2017 y diciembre de 2019, de centros de salud del Distrito de Atención Primaria Costa del Sol y Málaga-Valle del Guadalhorce, y Fundación Cudeca. Se recogieron datos sociodemográficos de cuidadoras y pacientes, y se aplicaron cuestionarios específicos para medir la sobrecarga y satisfacción familiar (Zarit y FAMCARE), calidad de vida (SF-36) y diagnósticos enfermeros (NANDA), así como las características del paciente (PPI, PPSv2). Resultados: Se incluyó a 174 personas cuidadoras familiares, de las cuales el 86,8% eran mujeres con una edad media de 57 años. El 60,6% percibía su salud como buena y la puntuación media en la escala de Zarit fue 13,0. El diagnóstico enfermero (NANDA) más repetido fue «Riesgo de cansancio del rol del cuidador» (41,8%). Las dimensiones de calidad de vida con mayor puntuación fueron «Función física» (80,5), y «Rol físico» (67,2). El 62,6% de las personas cuidadas eran hombres con una edad media de 73 años, y requerían cuidados con una media de 19 horas al día. La puntuación media en la Escala Funcional Paliativa PPSv2 fue de 44,9% y en el Índice de pronóstico paliativo PPI, 3,9%. Conclusiones: Las cuidadoras familiares de este estudio presentaban sobrecarga moderada, alto riesgo de cansancio del rol de cuidador, y aceptables salud percibida y calidad de vida. Es probable que esto se deba a que estaban en el inicio de los cuidados paliativos.(AU)
Objectives: To describe the quality of life and caregiver burden of family caregivers of cancer patients at the beginning of palliative care. Method: Cross-sectional descriptive study in the CUIDPACOSTASOL cohort of family caregivers of palliative phase cancer patients, included between February 2017 and December 2019 from health centres of the Costa del Sol and Malaga-Valle del Guadalhorce Primary Care District, and Cudeca Foundation. Sociodemographic data on caregivers and patients, specific questionnaires related to family caregiver burden as well as satisfaction (Zarit and FAMCARE), quality of life (SF-36) and nursing diagnoses (NANDA), and patient characteristics (PPI, PPSv2) were collected. Results: 174 family caregivers were included, 86.8% were women with a mean age of 57 years. 60.6% perceived their health as good, and the mean score on the Zarit scale was 13.0. The most repeated nursing diagnosis (NANDA) was «Risk for caregiver role strain» (41.8%). The quality-of-life dimensions with the highest scores were «Physical function» (80.5), and «Physical role» (67.2). Of the people receiving care, 62.6% were men with a mean age of 73 years and required care for an average of 19 hours per day. The mean score on the Palliative Performance Scale, PPSv2, was 44.9%, and 3.9% on the PPI Palliative Prognostic Index. Conclusions: Family caregivers in this study had moderate burden, high risk for caregiver role strain, and acceptable perceived health and quality of life. This is probably because they were at the beginning of palliative care.(AU)
Subject(s)
Humans , Female , Caregivers , Palliative Care , Quality of Life , Stress, Psychological , Epidemiology, Descriptive , Cross-Sectional StudiesABSTRACT
OBJECTIVES: To describe the quality of life and caregiver burden of family caregivers of cancer patients at the beginning of palliative care. METHOD: Cross-sectional descriptive study in the CUIDPACOSTASOL cohort of family caregivers of palliative phase cancer patients, included between February 2017 and December 2019 from health centres of the Costa del Sol and Malaga-Valle del Guadalhorce Primary Care District, and Cudeca Foundation. Sociodemographic data on caregivers and patients, specific questionnaires related to family caregiver burden as well as satisfaction (Zarit and FAMCARE), quality of life (SF-36) and nursing diagnoses (NANDA), and patient characteristics (PPI, PPSv2) were collected. RESULTS: 174 family caregivers were included, 86.8% were women with a mean age of 57 years. 60.6% perceived their health as good, and the mean score on the Zarit scale was 13.0. The most repeated nursing diagnosis (NANDA) was «Risk for caregiver role strain¼ (41.8%). The quality-of-life dimensions with the highest scores were «Physical function¼ (80.5), and «Physical role¼ (67.2). Of the people receiving care, 62.6% were men with a mean age of 73 years and required care for an average of 19 h per day. The mean score on the Palliative Performance Scale, PPSv2, was 44.9%, and 3.9% on the PPI Palliative Prognostic Index. CONCLUSIONS: Family caregivers in this study had moderate burden, high risk for caregiver role strain, and acceptable perceived health and quality of life. This is probably because they were at the beginning of palliative care.
Subject(s)
Caregivers , Neoplasms , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Neoplasms/therapy , Palliative Care , Quality of LifeABSTRACT
OBJECTIVES: To describe the quality of life and caregiver burden of family caregivers of cancer patients at the beginning of palliative care. METHOD: Cross-sectional descriptive study in the CUIDPACOSTASOL cohort of family caregivers of palliative phase cancer patients, included between February 2017 and December 2019 from health centres of the Costa del Sol and Malaga-Valle del Guadalhorce Primary Care District, and Cudeca Foundation. Sociodemographic data on caregivers and patients, specific questionnaires related to family caregiver burden as well as satisfaction (Zarit and FAMCARE), quality of life (SF-36) and nursing diagnoses (NANDA), and patient characteristics (PPI, PPSv2) were collected. RESULTS: 174 family caregivers were included, 86.8% were women with a mean age of 57 years. 60.6% perceived their health as good, and the mean score on the Zarit scale was 13.0. The most repeated nursing diagnosis (NANDA) was «Risk for caregiver role strain¼ (41.8%). The quality-of-life dimensions with the highest scores were «Physical function¼ (80.5), and «Physical role¼ (67.2). Of the people receiving care, 62.6% were men with a mean age of 73 years and required care for an average of 19 hours per day. The mean score on the Palliative Performance Scale, PPSv2, was 44.9%, and 3.9% on the PPI Palliative Prognostic Index. CONCLUSIONS: Family caregivers in this study had moderate burden, high risk for caregiver role strain, and acceptable perceived health and quality of life. This is probably because they were at the beginning of palliative care.
ABSTRACT
OBJETIVO: Identificar áreas de interés subyacentes en el proceso de Declaración de Voluntades Vitales Anticipadas (DVVA) y consensuar un cuestionario de conocimientos y actitudes dirigido a profesionales de la salud. DISEÑO: Estudio a través de técnica Delphi con método Rand. Dos fases: 1) propuestas de dimensiones: generación de ideas y posterior priorización de estas; 2) propuesta y priorización de ítems agrupados en bloques de conocimientos y actitudes. Desarrollado entre agosto de 2012 y enero de 2013. Emplazamiento: El trabajo se realizó por contacto inicial telefónico con panelistas y posteriormente vía correo electrónico. Los panelistas pertenecen al Sistema Sanitario Público Andaluz. PARTICIPANTES: Los criterios para la selección de los 8 componentes del panel fueron los conocimientos y la experiencia en el ámbito de la autonomía del paciente en Andalucía. RESULTADOS: Se identificó en Conocimientos: 1. °A) aspectos legales/generales; 2. °A) definición conceptual; 3. °A) documentación normalizada de las voluntades vitales anticipadas; 4. °A) experiencia práctica; 5. °A) procedimiento y registro de las DVVA. El segundo bloque fueron de Actitudes: 1. °B) actitudes del profesional en el momento de la aplicación del DVVA en la práctica clínica; 2. °B) actitudes del profesional ante escenarios éticos «complejos». Los 7 panelistas que finalmente participaron propusieron 165 ítems. Tras aplicar los criterios de priorización, puntuación y selección de escenarios, se identificaron 58 (35,2%) ítems como escenario adecuado. CONCLUSIONES: El cuestionario propuesto recoge amplias parcelas de conceptos y contenidos, y una vez validado ayudará a medir las intervenciones formativas realizadas en profesionales sanitarios para la mejora del conocimiento y las actitudes sobre el entorno de las DVVA
OBJECTIVE: To identify the underlying interests of the Living Will Declaration (LWD) process and to determine the consensus, using a questionnaire, of the knowledge and attitudes of health professionals. DESIGN: A study was performed in two phases using a Delphi technique with a Rand method.1. Dimensions proposed: generation of ideas and their subsequent prioritizing; 2. Proposal and prioritizing of items grouped into blocks of Knowledge and Attitudes, developed between August 2012 and January 2013. SETTING: The work was carried out by initial telephone contact with panellists, and then later by the panellists belonged to the Andalusia Public Health System. PARTICIPANTS: The criteria for selecting the eight components of the panel were knowledge and experience in the field of the freedom of the patient in Andalusia. RESULTS: The Knowledge identified included: 1 A) Legal and general aspects; 2 A) A conceptual definition; 3 A) Standardised LWD documents: 4 A) Practical experience; 5 A) Procedure and registering of the LWDs. The second block included Attitudes: 1 B) Attitudes of the professional in the application of LWDs in clinical practice, and 2 B) Attitudes of the professional in «complex» ethical scenarios The 7 panellists who finally took part proposed 165 items. After applying the prioritizing criteria, scores, and scenario selection, 58 (35.2%) items were identified as suitable scenarios. CONCLUSIONS: The proposed questionnaire included wide parcels of concepts and contents that, once validated, will help to measure the training interventions carried out on health professionals in order to improve knowledge and attitudes on the subject of LWDs
Subject(s)
Female , Humans , Male , Health Knowledge, Attitudes, Practice , Health Personnel/trends , Advance Directive Adherence/organization & administration , Advance Directive Adherence/standards , Advance Directive Adherence , Patient Rights/standards , Surveys and Questionnaires , Patient Advocacy/standards , Patient Advocacy/trendsABSTRACT
OBJECTIVE: To identify the underlying interests of the Living Will Declaration (LWD) process and to determine the consensus, using a questionnaire, of the knowledge and attitudes of health professionals. DESIGN: A study was performed in two phases using a Delphi technique with a Rand method. 1. Dimensions proposed: generation of ideas and their subsequent prioritizing; 2. Proposal and prioritizing of items grouped into blocks of Knowledge and Attitudes, developed between August 2012 and January 2013. SETTING: The work was carried out by initial telephone contact with panellists, and then later by the panellists belonged to the Andalusia Public Health System. PARTICIPANTS: The criteria for selecting the eight components of the panel were knowledge and experience in the field of the freedom of the patient in Andalusia. RESULTS: The Knowledge identified included: 1 A) Legal and general aspects; 2 A) A conceptual definition; 3 A) Standardised LWD documents: 4 A) Practical experience; 5 A) Procedure and registering of the LWDs. The second block included Attitudes: 1 B) Attitudes of the professional in the application of LWDs in clinical practice, and 2 B) Attitudes of the professional in «complex¼ ethical scenarios The 7 panellists who finally took part proposed 165 items. After applying the prioritizing criteria, scores, and scenario selection, 58 (35.2%) items were identified as suitable scenarios. CONCLUSIONS: The proposed questionnaire included wide parcels of concepts and contents that, once validated, will help to measure the training interventions carried out on health professionals in order to improve knowledge and attitudes on the subject of LWDs.
Subject(s)
Health Knowledge, Attitudes, Practice , Health Personnel , Living Wills , Humans , Surveys and QuestionnairesABSTRACT
OBJECTIVES: To design and validate an instrument to assess satisfaction with home care services, in both self-administered and telephone versions. METHODS: We performed a cross-sectional observational study of the population using home care services in the health districts of Malaga, Costa del Sol, Almeria and Granada (Spain). A questionnaire was designed by an expert panel using a Deplhi technique. Reliability between the self-administered and telephone versions was analyzed. Finally, internal consistency and construct validity were assessed. RESULTS: Reliability between the self-administered and telephone versions was high (intraclass correlation coefficient = 0.876; 95% CI, 0.726-0.941; p = 0.0001). Internal consistency was adequate (Cronbach's alpha: 0.853 and 0.799 for both versions, with or without caregiver, respectively). The factorial analysis explained 66.80% and 67.81% of the observed variance for the two versions (with or without caregiver, respectively). Two factors were isolated and related to interpersonal relationships, the role of the carer, and decision making. CONCLUSION: Assessment of satisfaction with home care can be performed with the dimensions routinely used in satisfaction studies, but these should be evaluated with instruments designed ad hoc. Accessibility, communication and interpersonal relationships have a high explanatory value in satisfaction among this population.
Subject(s)
Home Care Services , Patient Satisfaction , Surveys and Questionnaires , Aged , Cross-Sectional Studies , Female , Humans , MaleABSTRACT
Objetivos: Construir y validar un instrumento que evalúe la satisfacción con los servicios de atención domiciliaria en versión autoadministrada y telefónica. Método: Estudio observacional transversal en población con atención domiciliaria de los distritos sanitarios de Málaga, Costa del Sol, Almería y Granada. Se diseñó un cuestionario por parte de expertos en la técnica Delphi. Posteriormente, se evaluó la fiabilidad entre las versiones telefónica y autoadministrada y, por último, se comprobó su validez de constructo y la consistencia interna. Resultados: La fiabilidad entre las versiones telefónica y autoadministrada fue alta (coeficiente de correlación intraclase = 0,876; intervalo de confianza del 95%, 0,726-0,941; p = 0,0001). La consistencia interna también fue adecuada (alfa de Cronbach de 0,853 y 0,799 para las distintas versiones, con o sin cuidadora, respectivamente). El análisis factorial explicaba un 66,80 y un 67,81% de la varianza observada para las distintas versiones (con o sin cuidadora). Se aislaron 2 factores que tenían que ver con la relación interpersonal, el rol de la cuidadora y la toma de decisiones. Conclusiones: La evaluación de la satisfacción con los servicios de atención domiciliaria puede realizarse con dimensiones habitualmente utilizadas en los estudios de satisfacción, aunque han de ser evaluadas mediante instrumentos diseñados al efecto. La accesibilidad, la comunicación y las relaciones interpersonales adquieren un alto valor explicativo en la satisfacción de este tipo de población
Objectives: To design and validate an instrument to assess satisfaction with home care services, in both self-administered and telephone versions. Methods: We performed a cross-sectional observational study of the population using home care services in the health districts of Malaga, Costa del Sol, Almeria and Granada (Spain). A questionnaire was designed by an expert panel using a Deplhi technique. Reliability between the self-administered and telephone versions was analyzed. Finally, internal consistency and construct validity were assessed. Results: Reliability between the self-administered and telephone versions was high (intraclass correlation coefficient = 0.876; 95% CI, 0.726-0.941; p = 0.0001). Internal consistency was adequate (Cronbach's alpha: 0.853 and 0.799 for both versions, with or without caregiver, respectively). The factorial analysis explained 66.80% and 67.81% of the observed variance for the two versions (with or without caregiver, respectively). Two factors were isolated and related to interpersonal relationships, the role of the carer, and decision making. Conclusion: Assessment of satisfaction with home care can be performed with the dimensions routinely used in satisfaction studies, but these should be evaluated with instruments designed ad hoc. Accessibility, communication and interpersonal relationships have a high explanatory value in satisfaction among this population
