Lyngby, May 2019 - Conference on Active and Healthy Ageing
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Lyngby,
May 2019
Conference on Active and Healthy Ageing
Presentation Overview
LITERATURE NEEDS
ANT CONCLUSIONS
INVESTIGATION
Family Caregiver
Definition: Anyone (parents, adult children, spouses…) who provides any type of physical and
emotional care for an ill loved one at home.
Family caregivers operate as extensions of health care systems
and as home-based “care coordinators”.
“Burden of care" related to the time required for assistance and to
the severity of the disease progression.
◦ Cancer can be defined as a family disease.
◦ Caregiver-patient dyad as unit of care (WHO).
What do we know?
Caregivers’ emotional and behavioral reactions
NORMAL PSYCHOPATHOLOGICAL
Variables related to the risk of developing 30-40% suffer disorders
psychopathological problems in family caregivers
Anxiety
Variables related to the disease (stage, prognosis,
symptoms, response to treatments ...)
Depression
Variables related to the family (poor cohesion and
adaptability, communication difficulties, intra-family conflict,
multiple stressful events, socio-economic problems ...)
Sleep
Variables related to individual family members
(previous psychopathological disorders, stressful loss events ...)
What do we know?
Multidimensional Burden (objective, evolutionary, social,
emotional).
Physical disorders:
Fatigue, loss of appetite and weight, gastrointestinal
problems, headaches and blood pressure disorders.
72% of caregivers report moderate to severe sleep
disorders and some experience a 44% reduction in
total sleep time compared to the recommended 8
hours.
Psychological disorders:
Distress. Anxiety and depression (partners: 16- 56%;
other caregivers: 10-53%), which in some studies
exceed patient percentages. PTSD, about 4%.
Care-giving disrupts relationships and social activities.
Deterioration of professional functioning.
Needs Systematic assessment of caregivers’ needs is rarely practiced. Need for > information (info on illness and treatment, 26-100%, and info on assistance, 21-100%) and effective communication; need for support for assistance and financial support; need for educational support and decision-making support; need for > attention to their state of well-being; need for rest; need for support for psychological trauma, preparation for facing the reality of the death of a loved one and support for mourning.
ANT Investigation
Care for carers: an investigation on family
caregivers' needs, tasks, and
experiences.
V. Zavagli, M. Raccichini, R. Ostan, G.
Ercolani, L. Franchini, S. Varani
In press
Objectives Better identify unmet needs and lifestyles’ changes of family caregivers of oncological patients; Correlate them with the patients’ functional status in order to investigate if caregivers’ needs change as the patients’ functional abilities change. PROVIDE ADEQUATE SUPPORT TO THE CAREGIVERS AND RELIEVE THEIR DIFFICULTIES IN ORDER TO RAISE THE QUALITY OF THEIR ASSISTANCE
Sample and methods
All caregiver filled out and a battery of
self-report questionnaires:
Cancer Caregiving Tasks, Consequences
and Needs (CaTCoN);
Activities of Daily Living (ADL);
Instrumental Activities of Daily Living
(IADL).
Cancer Caregiving Tasks, Consequences
and Needs (CaTCoN)
It is a 72-item questionnaire. It measures the care-
giving experience in terms of tasks, consequences
and needs, mainly concerning information from and
communication and contact with health care
professionals.
e.g., tasks
e.g., needs
e.g., consequencesActivities of Daily Living - ADL
It is a scale that contains a series of basic
activities performed by individuals on a daily
basis. It includes the fundamental skills necessary
Continence Dressing Toilette for independent living at home or in the
community.
It provides the assignment of a point for each
independent function so as to obtain a total
performance result.
Eating Hygiene TransferInstrumental Activities of Daily Living - IADL
It is a scale that contains a series of actions that are
important to being able to live independently, but are not
necessarily required on a daily basis. It can be useful to
Finances Shopping determine with greater detail the level of assistance
required by a sick person.
It provides the assignment of a point for each independent
function so as to obtain a total performance result.
Medications Telephone
Housekeeping Meals
Laundry TransportationResults
CAREGIVING TASKS
63% provide a lot of practical 45% provide a lot of 67.7% provide enough or a lot
help to the patient personal care of psychological support
% %
%
None A little Some A lot
A lot
None A little Some A lot None A little Some A lot Do you have to provide psychological support to the
Do you have to provide practical help to the patient? Do you have to provide personal care to the patient? patient?
48.8% spend a lot of time transporting the patient.
66.7% feel partially responsible for keeping track of whether the patient has been referred and called for
examinations and treatments quickly and correctly.Results
CAREGIVING CONSEQUENCES
1) Social consequences : 2) Distress and physical health:
Caregivers report
41% report a significant reduction of that their loved
time to dedicate to friends and 81.3% report being pretty or very one's illness also
acquaintances stressed affected their
60
physical health:
35.5% a little, 26.3%
50 quite, 14.3% a lot.
40
Percentuale
%
% 30
20
10
No, not at Yes, a Yes, Yes,
all little some a lot
LaHas
malattia oncologica
the patient’s cancerdel paziente
disease ha that
meant implicato unanot
you have riduzione
had di 0 No, not at all Yes, a Yes, Yes,
tempo
enoughdatime
dedicare ai suoi
for your amici e conoscenti?
friends/acquaintances? no, per niente little
si, un po' si, abbastanza
some si,amolto
lotResults
CAREGIVERS’ NEEDS
Rest periods and “normal” life:
47% 45.9%
% %
30.8% 30.5%
None A little Some A lot None A little Some A lot
Ha avuto
Have la that
you felt percezione di potersi
you have had prendere
the possibility to take auna
breakpausa
from Ha avuto
Have la that
you felt percezione di poter
you have had condurre
the possibility to leaduna vita life
a ‘normal’
the practical tasks?
da questi impegni pratici? at the same mentre
‘normale’ time as being a caregiver?
svolgeva il ruolo di caregiver?
The majority of caregivers report that they cannot take a rest
from care-giving and they do not have the perception of being
able to lead a "normal" life.Results
CAREGIVERS’ NEEDS
Interaction with the health care professionals : information.
% %
None A little Some A lot Never Sometimes Mostly Always
Pensa che sia stato dedicato abbastanza tempo per informare i HaHave
maiyou had porre
dovuto to ask domande
the healthal
care professionals
personale questions
sanitario al fineindiorder to getlethe
ottenere
Do you think
familiari enough time has been spent informing caregivers?
dei pazienti? information you
informazioni have
di cui needed?
necessitava?
54% of caregivers report that not enough time has been spent informing them and that often they
had to ask professionals questions in order to get the information they needed (45.2%).Results
CAREGIVERS’ NEEDS
Interaction with the health care professionals : interest and attention.
40.7% 38.1%
%
26.6% 29.4% 30.6%
25.1%
Never Sometimes Mostly Never Sometimes Mostly Always Never Sometimes Mostly Always
Always
IlHave
personale sanitario hashown
mostrato interesse Il Have
personale sanitario ha mostratoin theinteresse nei
the health care professionals interest in how you have Il personale sanitario ha avuto attenzioni confronti
the health
di come
interest in whether
care professionals
youLei,
as in qualità di
a caregiver
hospitals shown
caregiver,
have been ablesia
been feeling? Have the health care professionals paid attention to you?
nei confronti di come si è sentito? per lei? stato/a
to handlecapace di gestire la situazione?
the situation?
LACK OF ATTENTION
AND INTEREST!Results
CAREGIVERS’ NEEDS
Interaction with the health care professionals : realistic idea of the patient's situation and hope.
More than half of caregivers
reports that the professionals
did not give them an
% %
unrealistically positive idea of
the patient’s situation (70.3%)
nor have deprived them of
hope(64.8%)
None A little Some A lot
None A little Some A lot
Ha mai avuto la percezione che il personale sanitario
LeHave you felt that the health care professionals have given you an
abbia fornito
unrealistically un’idea
positive positiva
idea of the patient’sirrealistica
situation? della Ha mai
Have youavuta
felt that la
thepercezione che il personale
health care professionals sanitario
have deprived you of
situazione del paziente? hope?
l’abbia privata della sua speranza?Results
CAREGIVERS’ NEEDS AND ADL/IADL
Negative correlation with the scores
of ADL and IADL and caregiving
tasks (rho= -0.294, p=0.000; rho= -
0.264, p=0.000).
Negative correlation with the scores
of ADL and IADL and the physical
health (rho= -0.136, p=0.037; rho= -
0.190, p=0.003).
Negative correlation with the scores
of ADL and IADL and the negative
social consequences (rho= -0.192,
p=0.049; rho= -0.306, p=0.001).
Positive correlation with the scores of Negative correlation (rho= -0,306, pSumming up... Caregiving is burdensome. Large proportions of caregivers experience substantial caregiving workload related to practical help and emotional/psychological support. Caregivers report several negative consequences of caregiving, especially lack of time for social relations, distress and physical health. Considerable proportions of caregivers experience problems or have unmet needs regarding the interaction with the health care professionals. Problematic aspects include the provision of enough information and the interest to their well- being and feelings.
Conclusions
This investigation can be viewed as guidance for :
determining appropriate support services in order to achieve
caregiver satisfaction, and decrease caregiver burden;
providing high-quality care;
developing and publishing Guidelines;
urging legislators to recognize the caregivers’ figure (law??).Conclusions
Combining professional and relational skills and enriching
medical care with emotional intelligence.
Need for the relationship to be established by adhering to the principles
of empathy.
EMOTIONAL CAPABILITIES AS A NORMAL
COMPONENT OF MEDICAL ASSISTANCE!
CARE, NOT
ONLY CURE!Conclusions
veronica.zavagli@ant.it
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