Enhancing psychosocial and spiritual palliative care: Four-year results of the program of comprehensive care for people with advanced illnesses and their families in Spain.

OBJECTIVE: We aimed to describe the overall quantitative and qualitative results of a "La Caixa" Foundation and World Health Organization Collaborating Center Program entitled "Comprehensive Care for Patients with Advanced Illnesses and their Families" after four years of experience. METHOD: Qualitative and quantitative methods were employed to assess the program. Quasiexperimental, prospective, multicenter, single-group, and pretest/posttest methods were utilized to assess the quantitative data. The effectiveness of psychosocial interventions was assessed at baseline (visit 1) and after four follow-up visits. The following dimensions were assessed: mood state, discomfort, anxiety, degree of adjustment or adaptation to disease, and suffering. We also assessed the four dimensions of the spiritual pain scale: faith or spiritual beliefs, valuable faith or spiritual beliefs, meaning in life, and peace of mind/forgiveness. Qualitative analyses were performed via surveys to evaluate stakeholder satisfaction. RESULTS: We built 29 psychosocial support teams involving 133 professionals-mainly psychologists and social workers. During the study period, 8,964 patients and 11,810 family members attended. Significant improvements were observed in the psychosocial and spiritual dimensions assessed. Patients, family members, and stakeholders all showed high levels of satisfaction. SIGNIFICANCE OF RESULTS: This model of psychosocial care could serve as an example for other countries that wish to improve psychosocial and spiritual support. Our results confirm that specific psychosocial interventions delivered by well-trained experts can help to ease suffering and discomfort in end-of-life and palliative care patients, particularly those with high levels of pain or emotional distress.

Capacidades familiares para cuidar de enfermos oncológicos paliativos: un estudio cualitativo / The ability of family members to care palliative cancer patients: A qualitative study

El objetivo de este estudio fue evaluar los factores que pueden influir en la capacidad de que dispone una familia para cuidar de un paciente oncológico que requiere cuidados paliativos. Se trata de un estudio amplio, cualitativo y de observación, respaldado por la Teoría Fundamentada (Grounded Theory) y el uso de la técnica de grupos focales. En el periodo de enero a agosto de 2009 reunimos a 13 familiares de pacientes con enfermedad oncológica incurable y progresiva que estaban siendo atendidos por un servicio de cuidados paliativos de un hospital oncológico situado en el norte de Portugal, separados por 2 grupos focales distintos. Mediante el análisis de lo transcrito del grupo focal se identificaron 4 ejes que aportan factores (categorías), que pueden condicionar la capacidad de cuidar: el eje práctico (ingreso, asistencia técnica, recursos sociales/salud, cuidados paliativos, apoyo psicológico, traslado, gastos de la casa); el eje relacional (los vínculos, la pérdida, la privacidad, la intimidad, el apoyo al cuidador, compartir), el eje de experiencia interna (sentimientos, estrategias de afrontamiento, afecto, sufrimiento, muerte, apoyo psicológico), y la condición del eje de la salud (la recuperación, los síntomas, la información sobre la enfermedad, la vulnerabilidad del cuidador). La construcción de los indicadores identificados en la investigación pueden resultar muy útiles para detectar en una evaluación integral a la familia factores que pueden poner en riesgo la capacidad del grupo familiar para atender al paciente y asegurar la continuidad del manejo por Cuidados Paliativos

The aim of this study is to assess the factors that can influence the capability of a family to take care of an oncology patient in Palliative Care. It is a broad, qualitative and observational study, backed by the Grounded Theory and using the Focus Group technique. Meetings, separated into 2 focal groups, were held in the period from January to August 2009, with 13 relatives of patients with incurable cancer and progressive disease, who were being cared for in a Palliative Care Unit of an oncology hospital in northern Portugal. By analyzing the focal groups transcripts, 4 axes that carry factors (categories) that may condition the ability to be a caregiver could be identified: The practical axis (admission, technical assistance, social/health resources, palliative care, psychological support, relocation, home expenses), the relational axis (bonds, loss, privacy, intimacy, support to the caregiver, sharing), the internal experience axis (feelings, coping strategies, affection, suffering, death, psychological support), and the health condition axis (recovering, symptoms, information about the illness, vulnerability of the caregiver). A list of the identified indicators is of help in the holistic evaluation of the family, by enabling an early detection of traits that may be of risk to their caring capacity, determining the continuity of the palliative care and/or a possible discharge

O suporte à família em cuidados paliativos / Family support in palliative care

Não faz sentido falar de cuidados paliativos sem referenciar uma equipa multidisciplinar e interdisciplinar que comporta diferentes profissionais, de diferentes áreas, que apoiem o doente e a família (TWYCROSS, 2003). Este é o desafio que o artigo apresenta, o de poder passar a visão psicossocial que envolve o mundo do doente paliativo e suas famílias, onde os cuidados de saúde considerados ativos estão centrados na dolência do ser humano. Pretende-se aqui contribuir para o conhecimento sobre as famílias no contexto de doença terminal recorrendo à investigação efetuada nesta área sistêmica e ao conhecimento empírico, enquanto investigadores e profissionais no trabalho diário com doentes e famílias em intenso sofrimento.

It makes no sense to talk about palliative care without referencing a multidisciplinary and interdisciplinary team approach comprising different professionals from different fields, supporting the patient and family (TWYCROSS, 2003). This is our challenge: the challenge to study the psychosocial world of palliative patients and their families, where health care are considered active and centered on the human being. We intend in this paper to contribute to the knowledge of the families in the context of terminal illness using the systemic research done in this area and our empirical knowledge, while researchers and practitioners in their daily work with patients and families in higher distress.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

BACKGROUND: The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. OBJECTIVE: This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. RESULTS: At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. CONCLUSIONS: Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

The "La Caixa" Foundation and WHO Collaborating Center Spanish National Program for enhancing psychosocial and spiritual palliative care for patients with advanced diseases, and their families: preliminary findings.

OBJECTIVE: The psycho-social needs of patients with advanced chronic illness and their families include emotional, spiritual, and bereavement care. With a funding initiative by the La Caixa Foundation and design by the WHO Collaborating Center, we developed and implemented a program for the comprehensive care of terminally-ill individuals and their families, in Spain. The intent was to improve the psycho-social and spiritual dimensions of care, to generate experience and evidence, to explore models, and to act as catalyst in the Spanish National Strategy for Palliative Care. METHOD: We reviewed the process of design, implementation, and initial evaluation of the program at 18 months. RESULTS: Thirty psycho-social teams' (PST) acting as support teams projects were initiated. There were 120 full-time healthcare professionals appointed (58% clinical psychologists). These professionals received training through a comprehensive postgraduate course, and all used the same documentation. Some results were collated 18 months post-implementation. The total number of patients attended to was 10,954, and the number of relatives was 17,715. The preliminary clinical outcomes show a significant improvement in well-being, and a decrease in anxiety and insomnia, although there was a smaller impact on alleviating depression. Healthcare professionals collated results on satisfaction with palliative care (PC) services. SIGNIFICANCE OF RESULTS: Based on these preliminary results, we suggest that the PST can be a model of organization that is effective and efficient in improving the psycho-social and spiritual aspects of care of terminally ill patients. Further follow-up and evaluation with validated tools are the main goals for the immediate future.