Quality of Life and Needs of the Terminal Patient: an Applied Study to Improve Precarious Social Environments

Project location: Spain, Barcelona
Project start date: July 2008 - Project end date: December 2009
Project number: 2008-05
Beneficiary: Universidad Autónoma de Barcelona

The main aim of caring terminally ill patients consists in maintenance and/or improvement of the quality of life of the patient and of his relatives in the last stage of patient's life, in the best possible way. The ideal care means attending first of all patient needs and then support the relatives using suitable resources for each situation in the direct care of the terminally ill patient, especially in case of pediatric patients. Care of the family is an indirect way to support the patient, because of the important role of the family as a principal provider of emotional support. The terminal situation is very stressing especially for the families that are unstructured, with poor resources or in marginal or new cultural situations (immigrants). These patients suffer not only for being at the end of their life but also for leaving their relatives in a different cultural context.
There are diverse studies available about the situation of terminally ill patients and the often unsufficient resources that are available to attend their physical needs. However, there are only very few studies available that offer informations about the patients point of view. It is necessary to get more informations about the patients needs in the different stage of adaptation to the terminal situation and develop a system that from more humanitarian point of view facilitates the relation of the society, mainly by voluntary action, with the terminally ill patients.
The objectives of this project co-funded by the Nando Peretti Foundation are to help and provide support to the persons with more needs in the terminal situation, to involve the society increasing the solidarity to the terminally ill patients and to provide support across voluntary action.

The project will be realized in Catalonia, Spain, concretely in the neighbouring populations of Cerdanyola (location of the University) and Ripollet (pilot study), both in the region of the Vallés Occidental (peripheral zone of Barcelona).

This Project must be based first of all on a detailed knowledge about the situation of terminally ill patients and their needs in a concrete environment (population of the village of Ripollet) in the first stage of the project. During the second stage of the project the support system for the patients will be developed, coinciding with the creation of a new hospital of the region for the population/village of Ripollet, Cerdanyola and Montcada, with an important presence of immigrants, marginal and with few economic and educational resources.
The objective is to improve the individualised support for terminally ill persons, by:
- Evaluating their personal needs
- Offering accompaniment
- Facilitating individual care
- Empowering the voluntary action
- Treating favourably the realisation of an (least) important desire

The first phase of the procedure (situational study and new support) is to develop a project to get detailed information about:
- The psychological needs of the patients
- The number of terminally ill persons in a pilot population (Ripollet)
- The forms of the current available care arrangements
- The action circuits
- The situation of the marginal and most needy persons
- The situation of pediatric patients

The second phase is:
- To integrate the new support form with the current available care arrangements (complementary system)
- To prepare the persons who will offer this service (professionals/volunteers)

The third phase is:
- To provide the new support to patients of a determined population as a first application.

The future orientation is the possibility to spread the new support and care arrangements, making it available to a mayor number of persons/populations in a similar situation.

The Autonomus University of Barcelona (UAB) is one of the most important organizations for basic and applied research in Spain because of quality and quantity of the research work carried out as shown by the university research reports. The UAB is an internationally recognized university with an outstanding competence for research. Numerous documents show the research capacity of the UAB (see for example the document that is available on www.uab.cat/xifresidocuments, in Catalan, Spanish and English).
The Department for Education, Area for Basic Psychology, is carrying out diverse research studies about health: Main issues are including psychosocial problems of cancer, palliative patients, AIDS problems, stress and the adaptation to chronic illness, caregivers role of palliative patients, burnout or the syndrome of emotional exhaustion in professionals. The competence and capacity of the project director for carrying out the project is supported by:

1. More then 20 years of experience in collaboration with the Non-Profit organization "Asociación Española Contra el Cáncer" (Spanish Cancer Association). The benefit of this collaboration consists in the preparation and establishment of many new projects that have been conducted in care arrangements for cancer patients and their relatives, such as:
a. Program for support at home for terminally ill patients;
b. Support program for paediatric oncology patients;
c. Cancer-Life Program for patient groups that have to live with the cancer as a conical illness;
d. Individual psychological therapy for patients in advanced illness stage;
e. Training courses for volunteers giving support at home;
f. Coaching of family members for managing preparatory grief;
g. Development of groups for grief management.

2. Experience in coordinating form the UAB research projects in collaboration with hospitals and health centres: applied projects for improving the quality of life of:
a. oncology patients and relatives;
b. groups for breast cancer;
c. patients under AIDS treatment with lipodystrophy problems;
d. patients with cystic fibrosis.

3. Management of research studies, master thesis, thesis etc.

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