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INTRODUCTION: In the face of a growing ageing population and rising care needs, compassionate communities seek to visualize the community as an equal partner in the complex task of providing quality social and health care at the end of life. DESCRIPTION: Getxo Zurekin is a social innovation example for the creation of a compassionate community in Getxo, one of the most populated cities in the province of Biscay, with 25.46% of its population aged over 65. Mixed methodologies have been applied, active listening and co-creation of actions and strategies towards improving care and quality of life for people and families facing advanced disease and end of life situations, with more than 80 people interviewed to conform the basis for a collective sense making. The initiative has reached more than 1,000 people in Getxo. DISCUSSION: Following a systemic approach, horizontal relationships and cross-sectoral collaborations have allowed engaging the active involvement of local agents in the collective sense making and co- creation process. CONCLUSION: Getxo Zurekin represents an example of a participatory action research model, which has shown to be effective to meet initial targets towards creation of a compassionate community.
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OBJETIVO: El programa Saiatu ofrece un conjunto de servicios de ayuda a domicilio de carácter social para mejorar la atención a las personas con enfermedad avanzada/terminal y sus familias. Se presentan los resultados de un estudio realizado tras 17 meses de actividad para conocer las características de los pacientes atendidos, el lugar de fallecimiento y datos de actividad de Saiatu. MÉTODO: Estudio observacional transversal descriptivo, realizado en la provincia de Guipúzcoa. Población de estudio: pacientes atendidos por Saiatu entre el 1 de febrero de 2011 y el 30 de junio de 2012. Criterios de inclusión: pacientes fallecidos a 30 de junio de 2012. Muestra: se incluye toda la población (70 pacientes). Variables de estudio: datos de identificación de paciente y cuidador principal, datos sanitarios, datos al ingreso y al alta de Saiatu. RESULTADOS: Setenta pacientes (61,4% hombres y 38,6% mujeres) con una edad media de 76,79 años. En el 62,9% el cónyuge es el cuidador principal. Un 60% de familias no disponen de ayuda pública o privada. El nivel de dependencia es severa/moderada en el 75,7% de los pacientes. Un 88,6% fueron oncológicos y un 11,4% no oncológicos, remitidos sobre todo desde hospitalización a domicilio (37,1%). El 71,4% fallecieron en su domicilio, de los que un 92% deseaban fallecer en su casa. De los fallecidos en el hospital, un 65% deseaba fallecer en domicilio. Globalmente el 79% falleció en el lugar que deseaba. La edad, la disfagia y las necesidades emocionales se asocian a muerte en domicilio, mientras que la anorexia lo hace con muerte en hospital
BACKGROUND: Saiatu is a programme that offers a specially trained in-home social welfare assistance to improve the delivery of care for people with advanced and terminal illness, and their families. The following is a presentation of a study carried out following 17 months of work, showing the characteristics of those patients cared for, the place of death, and facts relating to Saiatu's daily activity. METHOD: A cross-sectional, observational descriptive study was conducted in the region of Gipuzkoa. POPULATION OF STUDY: Patients cared for by Saiatu between 1 February 2011 and 30 June 2012. INCLUSION CRITERIA: Patients who had died before 30 June 2012. Sample: The whole patient population (70 patients). Variables and sources of information: Records of identification of patient and main carer, health care information, and date of admission into Saiatu. RESULTS: Of the 70 patients cared for, 61.4% were men and 36.8% were women, with a mean age of 76.79 years old. In 62.9% of the cases the main carer was the spouse. More than half (60%) of the families did not have any public or private social support network, and their level of dependency was found to be severe to moderate in 75.7% of cases. The large majority (88.6%) of the patients were oncological, and the remainder were non-oncological. The majority of cases, 37.1%, were referrals from hospitalisation at home. Of the 92% who had expressed the wish to die at home, 71.4% had that wish fulfilled. However of those who died in hospital, 65% had expressed the wish to die at home. Overall 79% died in the place they had previously expressed. It was observed that age, dysphagia and emotional concerns were associated with death at home, whilst anorexia was related to death in hospital
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Humanos , Cuidados Paliativos/organização & administração , Serviços Hospitalares de Assistência Domiciliar/organização & administração , Apoio Social , Cuidadores/educação , Estudos Transversais , EspiritualidadeRESUMO
BACKGROUND: SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service), in Guipúzcoa (Autonomous Community of the Basque Country).In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients.The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals.The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU) results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. METHOD/DESIGN: Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care.For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index), and of the outcomes of palliative care received (Palliative Outcome Scale).Ethical approval for the study was given by the Clinical Research Ethics Committee of Euskadi (CREC-C) on 10 Dec 2012. DISCUSSION: The results of this prospective study will assist in verifying or disproving the hypothesis that the in-home social care offered by SAIATU improves the efficiency of healthcare resource usage by these patients (quality of life, symptom control).This project represents a dramatic advance with respect to other studies conducted to date, and demonstrates how, through the provision of personnel trained to provide social care for patients in the advanced stages of illness, and through strengthening the co-ordination of such social services with existing healthcare system resources, the resulting holistic structure obtains cost savings within the health system and improves the efficiency of the system as a whole.
