WHAT CAREGIVERS NEED?
9th Congress of the European Society on Family Relations
Porto, 5–8 September, 2018
Family care is the preferred type of care about
dependents seniors (when health status of the senior
enables staying at home).
Four out of five respondents from general public want
their families to care after them in the old age.
However, informal family care is provided only to 16 %
-capable and willing caregivers
- availability and affordability of social services
-society sensitive to the needs of caring families
- appropriate provisions (e.g., allowances, benefits)
PREDISPOSITIONS OF FAMILY CARE
Attention is usually paid to the needs of seniors.
(Detmar et al. 2001, Strawbridge et al. 1997 or Proot et al. 2004)
Other studies are focused on preferences of caregivers.
(Martire et al. 1997, Levine et al. 1999)
The concept of „needs“ is used interchangeably with
„preferences“ or „wants“.
Informal family care is usually appreciated; adequate
policy measures are recommended.
ACADEMIC REFLECTION OF THE ISSUE
The research task is to set criteria for evaluation the
effectiveness and usefulness of possible interventions
focused on supporting the caregivers.
To identify and summarize the needs of caregivers.
To contextualize the caregivers´needs within the family
Needs are the differences between „what is“ and „what
Needs identify the discrepancy between the real and ideal
state that is reflected through certain values.
People do not prefer certain needs.
Preferential data or perceived importance brings only
suboptimal results (top-of-mind issues/„usual suspects“).
EXPLORATORY TYPE OF INQUIRY
NEEDS VS. PREFERENCES/WANTS
Data collection method: In-depth interviews
Sample size: 67 cases
Sample characteristics: - main caregivers only
- 54 females; 13 males
- urban (42) and rural (25) regions
- 41 descendants, 23 partners,
and 3 others
Duration of care: 4–5 years
Care was closed within past three years
Information about available services, about eligibility criteria; about the illness,
drugs, legal advice, etc.
„Care allowance? Yeah, we have asked our general
practitioner, but he said that it was not for us. So, we
did not apply for that.“
Communication with the senior and with professional (e.g. nurses, social workers,
MDs); communication with other caregivers within the family, division of labor
within the family –negotiating about certain tasks; lost of personal contacts
(friends), higher risk of social exclusion (isolation).
Experiencing own limits, coping with the burden, burnout, seeking help, lower
IDENTIFIED NEEDS I.
End-of-life issues, feeling and sharing pain.
Paying direct and indirect costs associated with the care; consequences of
caregiving to own work-status; retirement and labor market decisions; financial
„I had to borrow some money to re-build the house.
I had to broaden the corridor and re-arrange
the bathroom. Then I had to pay instalments for
three consecutive years.“
Rebuilding the flat/house, moving, tool acquisition.
IDENTIFIED NEEDS II.
Practicing care-operations –adjustment, bathing, feeding; operating and
maintenance of appliances.
„Once, I experienced lumbago as I was trying to turn
her. Later on, I kept waiting till my sons came.“
Fear of own health; rehabilitation; solving own health issues.
„I should have gone for an eye-surgery, but I had to
cancel that because I would have to stay in a hospital
for five days. Who would care for him? So, I underwent
the surgery after he had passed away.“
IDENTIFIED NEEDS III.
STAGES OF CARE
Source: Aneshensel et al. (1995)
VARYING RELEVANCE OF THE NEEDS
* * ***
Failing to identify the needs might result in extensive
burden to caregivers, or in lower volume of care, lower
complexity of care, lower quality of care, and even
inability to provide care.
Needs are not constant during the course of caregiving.
Services supporting the caregivers should be targeted.
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Thanks for your Attention
Jiri REMR, PhD