Atención al duelo en los servicios españoles de cuidados paliativos: estudio comparativo con otros países europeos / Bereavement care in spanish palliative care services: a comparative study with other european countries

Objetivo: El objetivo de este trabajo es describir y comparar el tipo y las características de atención al duelo en Europa y España, así como actualizar e identificar avances en España con el fin de mejorar la atención al duelo. Método: Estudio observacional, descriptivo, prospectivo y comparativo. Realizado a partir de los datos del grupo de trabajo de duelo de la EAPC relativos a España, recogidos mediante un cuestionario que consta de 54 preguntas en 6 secciones: antecedentes, apoyo, personal, acceso y niveles de cuidado, aspectos comunitarios, recursos y modelo de atención. Fue distribuido por correo electrónico a través de la EAPC a 56 asociaciones nacionales de CP. Las comparaciones entre Europa y España se realizaron utilizando la prueba de Chi-cuadrado de Pearson. Resultados: La atención al duelo se ofrece en el 83 % de los 314 servicios que responden en Europa y en el 73 % de 56 servicios en España, con datos similares a estudios anteriores españoles. La mayoría de servicios corresponden a unidades hospitalarias. El tipo de soporte o intervención especializada depende del nivel de atención en ambos grupos. En Europa, el 32 % dispone de directrices o guías nacionales de duelo en su país, en España el 61 % de los servicios, lo que facilita la actuación. Los “instrumentos formales de riesgo” son utilizados solo por una cuarta parte de los servicios. Conclusiones: Este estudio presenta un avance y un reto futuro en la atención al duelo en Europa y España. Los datos han mostrado que la atención al duelo no forma parte de todos los servicios. El número de respuestas a los cuestionarios no ha aumentado ni se han incrementado los servicios en España. Tanto en Europa como en España es necesario seguir potenciando, formalizando e incrementando servicios con atención al duelo, como una parte esencial de los cuidados paliativos. (AU)

Objetive: To describe and compare the type and characteristics of bereavement care in Europe and Spain. To update and identify advances in Spain for improving grief care. Method: An observational, descriptive, prospective and comparative study. Made on data from the EAPC bereavement group relating to Spain, collected through a questionnaire consisting of 54 questions in 6 sections: background; support; personal; access, levels of care; community aspects; resources and care model. It was distributed by online mail via the EAPC to 56 national PC associations. Comparisons between Europe and Spain were made using Pearson’s χ2 test. Results: Bereavement care is offered by 83 % of the 314 responding services in Europe and in 73% of 56 services in Spain, with similar data to previous Spanish studies. Most services correspond to hospital units. The type of support or specialized intervention depends on level of care in both groups. In Europe, 27 % have National Grief Guides in their country, in Spain 61 % of services, which facilitates action. “Formal risk instruments” are used by only a quarter of the services. Conclusions: This study presents an advance and a future challenge in bereavement care in Europe and Spain. Data have shown that bereavement care is not included in all services. The numbers of responses to questionnaires have not increased, nor have services in Spain increased. Both in Europe and in Spain, it is necessary to continue promoting, formalizing and increasing services with attention to grief as an essential part of palliative care services. (AU)

Using the Delphi technique to achieve consensus on bereavement care in palliative care in Europe: An EAPC White Paper.

BACKGROUND: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. AIM: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. DESIGN: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%-79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. SETTING/PARTICIPANTS: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. RESULTS: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. CONCLUSIONS: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.

Invitation to grief in the family context.

Grief is a family affair, yet it is commonly viewed as an individual phenomenon. As an international, interdisciplinary team, we explore grief within a family context across theoretical, research, practice, and educational domains. Families are complex and working with this complexity is challenging but necessary for a holistic view of grief. We therefore encourage an increased focus on theorizing, researching, practicing, and educating using innovative approaches to address the complexities of grief within the context of families. Learnings from within each domain will affirm and enhance the development of family-level thinking and approaches.