PosterPDF Available

Social service response to families with a member with neurodegenerative disease

Authors:

Abstract

Introduction: Neurodegenerative diseases (ND) are the most important cause of dependency in the world. The care of these patients is mostly assumed by their families. As a result, their family quality of life (FQoL) may be affected, decreasing their well-being, and modifying their habits and normal functioning. FQoL is a multidimensional concept, composed of different aspects that determine the life situation of each family, being these components both objective and subjective. Thus, the FQoL will depend on being able to access to support services that respond to the individual needs of all members and that this is adequate to adapt the environment and lifestyle to the demands of the disease. Public administrations are responsible for covering the socio-health support needs of people with ND and their families. Objective: The objective of this research is to analyse whether the currently available social services are in accordance with the Family Life Quality model. Method: A descriptive analysis of the support offered by the public services of the Autonomous Community of Castilla y León (Spain) to people with ND and their families has been carried out, analysing its correspondence with the dimensions of the Quality of Family Life Survey of Brown and collaborators (2006): health of the family, financial well-being, family relationships, informal support, support from care services, the influence of values, leisure and community interaction. Results: The research results suggest that 1) most public services are aimed exclusively at the care of the person with ND; 2) these supports address the needs of the financial well-being, family relations and community interaction dimensions; 3) these are mainly aimed at supporting the situation when the illness worsens; 4) the limited specific services for families support them in the enjoyment of leisure and financial well-being. Conclusion: The public welfare system of Castilla y León does not consider the family of people with ND as the target of its support services, but the person with ND declared as a dependent. Thus, it does not offer support services aimed at satisfying some needs linked to the dimensions of the FQoL model.
SOCIAL'SERVICES'FOR'NEURODEGENERATIVE'PATIENTS'AND'THEIR'FAMILIES'
INTRODUCTION
Neurodegenerative diseases (ND) are one of the main causes of dependency in the world. It is
mostly families that take on the role of caring for these patients, in turn affecting their quality of life.
The severity of this effect depends on the availability of access to support that responds to the
individual need of all family members adequately, adapting their environment and lifestyle to the
demands of the disease (Turnbull, 2003). Public administrations are responsible for covering the
socio-health support needs of patients with ND and their families.
CONCLUSIONS
According to preliminary results, the public welfare system of Castilla y León does not consider the family of people with ND as the target of its support services, but rather the person with ND declared as a dependent. Thus, it does not
offer support services aimed at satisfying some needs linked to the dimensions of the FQoL model.
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
1. To analyse the public social services provided to people with ND and their families
2. To identify the differences between the services provided to these patients and their families
3. To analyse whether the social services currently available are in accordance with the Family
Quality of Life (FQoL) model.
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.
This poster is part of the Project
“NEUROQUALYFAM, Neurodegenerative Diseases
and Family Quality of Life”, funded by the Fondo
Europeo de Desarrollo Nacional (FEDER) through
the program INTERREG V-A España Portugal
(POCTEP) 2014 - 2020
Nuria del Álamo-Gómez, Estrella Montes-López, Eva María Picado-Valverde, Amaia Yurrebaso-Macho,
NEUROQUALYFAM group
University of Salamanca, Spain
REFERENCES
Brown, I., Brown, R. I., Baum, N. T., Isaacs, B., J., Myerscough, T., Wang, M. (2006). Family Quality of
Life Survey: Main caregivers of people with intellectual disabilities. Surrey Place Centre.
Turnbull, A.P. (2003) Family Quality of Life Survey. Beach Center on Disabilty. University of Kansas.
METHODOLOGY
A descriptive analysis of the support that public social services in the Autonomous Community of
Castilla y León (Spain) offers has been carried out (128 services in total). Those that benefit
people with ND and/or their families have been selected (33 public services in total), and their
correspondence with the dimensions of the FQoL Survey of Brown and collaborators (2006) has
been analysed: health of the family, financial well-being, family relationships, support from other
people, support from services, influence of values, careers and preparing for careers, leisure and
recreation, and community interaction.
ACKNOWLEDGEMENTS
neuroqualyfam.usal.es
neuroqualyfam@usal.es
RESULTS
-Only 26% of the public services analysed benefit people with ND and their
families (Figure1).
-Of these, most public services (23%) are aimed exclusively at the care of the
patient (Figure 1).
-These are mainly aimed at supporting the situation when the illness worsens
-This support primarily addresses the needs of the financial well-being and
community interaction dimensions, followed by those of family relationships
and health (Figure 2).
-The limited specific services for families (3%) are related to family relief and
financial support
Figure 2. Review of the correspondence of public services with the dimensions of FQoL model
Figure 1.- Percentage of public services for ND patients and their families
!
INFORMATION,!
ASSESSMENT!AND!
MONITORING!
PREVENTION!
FAMILY!
SUPPORT!
SUPPORT!FOR!
PERSONAL!
AUTONOMY!
SOCIAL!CARE!
IN!A!
COMMUNITY!
CONTEXT!
COMPLETE!
ATTENTION!IN!
RESIDENTIAL!
CENTRE!
LEGAL!
PROTECTION!AND!
GUARDIANSHIP!
SUPPORT!
FOR!BASIC!
NEEDS!
Financial!well?being!
!!
!!
!!
!!
!!
!!
!!
!!
Community!interaction!!
!!
!!
!!
!!
!!
!!
!!
!!
Family!relationships!
X!
X!
!!
!!
!!
!!
!!
!!
Health!of!the!family!
!!
!!
X!
!!
!!
!!
X!
!!
Support!from!other!
people!!
!!
!!
!!
X!
!!
!!
X!
X!
Support!from!services!
!!
!!
!!
X!
!!
!!
X!
X!
Leisure!and!recreation!!
!!
!!
!!
X!
!!
X!
X!
X!
Influence!of!values!
!!
!!
X!
X!
X!
X!
X!
X!
Careers!and!
preparation!for!careers!
X!
X!
X!
X!
X!
X!
X!
X!
!
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