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Enhancing family quality of life outcomes: the NEUROQUALYFAM project

Authors:

Abstract

Background: Neurodegenerative diseases (ND) have a great impact on both patients and their relatives, since the latter play an essential role in the care process. Consequently, the families require support to perform this function with higher levels of wellbeing. The objective of the NEUROQUALYFAM project (Interreg V-A Spain-Portugal, POCTEP) is to analyze the quality of life of families of people with ND, to identify their needs and to plan family-centered support resources in order to offer high-quality social health services for people with ND and their families. Method: The study sample will consist of 300 families from the Spanish-Portuguese cross-border area. The Family Quality of Life Survey - Dementia (FQoLS) will be translated, adapted and validated (DiZazzo-Miller & Samuel, 2011) to assess their quality of life. Focus groups with families and professionals from health, social services and the third sector will be conducted to identify needs and support resources. The “section 2-Support and Services” of the validated Spanish version of the Beach Center Family Quality of Life Scale (Verdugo, Rodríguez and Sainz, 2012) will be adapted for families of people with ND to identify the types of support needed and to what extent they are provided. A confirmatory factor analysis will be conducted to examine the validity of the construct FQoLS- ND. A top-down content analysis will be undertaken for qualitative data. Results: The project will provide: (a) a procedure to evaluate the quality of life of families of people with ND; (b) the identification and mapping of unmet support needs regarding the health and social system; (c) the planning of a family-centered support system for the improvement of health and wellbeing outcomes, and (d) the design of a comprehensive ICT platform of support resources that enhances training, information exchange and collaborative networks between and among families and professionals. Conclusion: The project NEUROQUALYFAM provides a research and intervention model that might be applied in other regions and countries. It strengthens cooperation between the institutions (health and social services, third sector) to improve the quality of family life and optimize support resources for family caregivers.
ENHANCING FAMILY QUALITY OF LIFE OUTCOMES: THE NEUROQUALYFAM PROJECT
CONCLUSIONS
All the actions to be developed will have a positive long-term impact, both at national and local level, in both countries. This project will allow
the promotion of a sustainable and innovative environment through the resources it will offer :
Design of an evaluation procedure of the Quality of Family Life of people with ND. This procedure, supported by the evidence of the
project, will be promoted as an agreed, effective, ethically acceptable, legally compliant, learning object, and quality instrument. It will be
disseminated among a wide range of institutions dedicated to improving the quality of life of people with dementia and their families/carers.
Development of a map of support needs of families of people with ND, according to the Quality of Family Life model. This map will
be a useful tool for social health professionals and be shared among the network of international experts.
Design of a support resource platform for families of people with ND. This will allow progress in the application of technologies to the
challenges posed by ND. It will help to promote meetings of professionals and experts in the field. The contents generated in it will be
transmitted to students and socio-health professionals.
OBJECTIVE:
On this basis, the aim is to carry out an educational proposal about affective-sexual diversity, which is aimed to Infant Education and personal development.
OBJECTIVE:
On this basis, the aim is to carry out an educational proposal about affective-sexual diversity, which is aimed to Infant Education and personal development.
OBJECTIVES
The main objective is to address the needs of families by creating and planning innovative, high-quality, family-
centered support resources, based on a collaborative relationship between family members and professionals.
The specific objectives are:
To evaluate the quality of life of families of people with ND and to identify their support needs.
To propose a resource guide for people with ND and their families, considering the needs map identified.
To develop an online platform including the portfolio of specific services for family members of people with ND
By these activities, the program allows the children to identify and express their own needs and emotions; and, although, recognize them in others.
This program, also, helps them understand and love their own bodies, projecting a positive image of themselves and their classmates. The sole objective of this program is to communicate uplifting values, and make students understand the fundamental of respect and tolerance.
INTRODUCTION
The NEURO QUALYFAM project is developed in the Cooperation Area that encompasses Castilla y
León and North-Central Portugal, characterized by a predominantly rural character and a progressive
aging of the population, which contributes to explain the high prevalence of neurodegenerative
diseases (ND). These diseases are one of the main causes of disability and dependency in these regions
and have a detrimental impact on the biopsychosocial well-being of both the patients and their families,
who assume the main caring role.
However, there is no comprehensive plan to support and meet the needs of these families so that
they can achieve a satisfactory quality of life. Likewise, no analysis has been undertaken in terms of
cost-effectiveness of the set of resources available for families from public and private organizations at
the national, regional and local level, and the way they are managed.
MAPPING AND EVALUATION OF NEEDS
1. Identification and characterization of the population of people
with ND and their families: epidemiological analysis.
2. Design of a needs assessment procedure from a family-
centered care model (Quality of Family Life paradigm)
Task 1. Identification and definition of the central components and
dimensions of quality of life for families (through focus groups with
families and professionals from health, social services and the
third sector).
Task 2. Adaptation and validation of a quality of life assessment
instrument for families. The Family Quality of Life Survey -
Dementia (FQoLS) will be translated, adapted and validated
(DiZazzo-Miller & Samuel, 2011). The sample will consist of 300
families from the Spanish-Portuguese cross-border area.
3.Classification of needs and analysis of resources. A map of
family needs and priorities (emotional, social, cognitive,
material...) will be created to guide the selection and/or design of
resources and services that optimize their well-being
This poster is part of the Project “NEUROQUALYFAM,
Neurodegenerative Diseases and Familay Quality of
Life”, funded by the Fondo Europeo de Desarrollo
Nacional (FEDER) through the program INTERREG V-
A España Portugal (POCTEP) 2014 - 2020
Eva González Ortega & NEUROQUALYFAM group
University of Salamanca, Spain
CEAFA (2017) Consecuencias de la
enfermedad de Alzheimer y otras
demencias en los cuidadores familiares.
Confederación Española de Asociaciones
de Familias de Personas con Alzheimer y
otras demencias
DiZazzo-Miller, R., & Samuel, P.S.
(2011). Family Quality of Life Survey: Main
Caregivers of Persons with Dementia.
Detroit: Wayne State University.
REFERENCES
MAPPING AND EVALUATION OF RESOURCES AND SERVICES
1. Analysis of reality in the institutional regulatory environment.
Task 1: Identification of services and resources offered in the cross-border area.
Task 2: Analysis of services and resources enjoyed by patients and their families.
2. Evaluation of services, resources and benefits according to the needs map
Task 1. Analysis of the adequacy and functioning of existing social services and
resources for patients and their families (through focus groups with families,
professionals and the third sector).
Task 2. SWOT analysis of available resources to meet the needs detected.
3. Design of a specific portfolio of services and resources for family members
Task 1. Design of a guide of services and resources that involves the key sectors.
Task 2. Development of standardized assessment procedures on the comprehensive
needs of family caregivers
Task 3. Development of mechanisms for coordinating the services and professionals
ICT PLATFORM OF THE SERVICE PORTFOLIO
An accessible and friendly system that allows access to resources and
services from families’ environment.
1. Prototype: design and piloting. Construction of an online platform that
includes the portfolio of specific services for the families of people with ND
2. Implementation of the virtual campus: health and professional online
channel
For families: virtual health classrooms, family interaction groups, consulting
and advisory services, etc.
For professionals: professional channel where the needs of the families are
shared so that a socio-health history of the patient and the family can be
drawn up; virtual community of practice to share knowledge and improve
communication
3. Evaluation and monitoring
Task 1: Development of a rubric to assess: accessibility, coordination,
usability and satisfaction, usefulness and possibilities of dissemination, etc..
Task 2: Maintenance and improvement
Task 3: Evaluation of the impact on society
ACKNOWLEDGEMENTS
ACTIONS
neuroqualyfam.usal.es
neuroqualyfam@usal.es
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