What caregivers need?

Abstract

Main goals of the presentation are: a) to introduce the needs of caregivers who provide care about elderly family member, b) to put such needs into the context of family environment and c) to relate the needs with the key risk factors. Methodology of a needs assessment, i.e., identification of the gap between current and optimal conditions for provided care was used. By using the needs assessment technique, it was possible to identify the unconscious needs. Presentation summarizes and categorizes the identified needs; moreover, available results indicate that the combination of risk factors and needs is for analyzed individuals unique. Such result leads to the conclusion that effective interventions should be customized and targeted.

Full text

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WHAT CAREGIVERS NEED?
Jiri REMR
9th Congress of the European Society on Family Relations
Porto, 5–8 September, 2018

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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 %
of seniors.
BACKGROUND

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Micro-level
-capable and willing caregivers
Mezzo-level
-cohesive families
- availability and affordability of social services
Macro-level
-society sensitive to the needs of caring families
- appropriate provisions (e.g., allowances, benefits)
PREDISPOSITIONS OF FAMILY CARE

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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

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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
environment.
OBJECTIVES

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Needs are the differences between „what is“ and „what
should be“.
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

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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
METHODS

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1. Educational
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.“
2. Social
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).
3. Psychological
Experiencing own limits, coping with the burden, burnout, seeking help, lower
life-satisfaction.
IDENTIFIED NEEDS I.

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4. Emotional
End-of-life issues, feeling and sharing pain.
5. Financial
Paying direct and indirect costs associated with the care; consequences of
caregiving to own work-status; retirement and labor market decisions; financial
planning (long-term).
„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.“
6. Technical
Rebuilding the flat/house, moving, tool acquisition.
IDENTIFIED NEEDS II.

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7. Practical
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.“
8. Health
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.

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STAGES OF CARE
Source: Aneshensel et al. (1995)

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VARYING RELEVANCE OF THE NEEDS
Role
Acquisition Role
Enactment Role
Disengagement
Educational
*** *
Social
* * ***
Psychological
**** *
Emotional
** ***
Financial
*** ***
Health
** ***
Practical
****
Technical
****

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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.
CONCLUSIONS

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REFERENCES

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Thanks for your Attention
Jiri REMR, PhD