Quality of life of caregivers
managing incontinence in
Europe
Quality of life of caregivers
managing incontinence in Europe
• Institute for Labour and Family Research,
Slovakia: Bernardina Bodnarova, Katarina Selestiakova
• The Swedish National Family Care Competence
Centre /Örebro University hospital, Department
of Urology, Sweden: Elizabeth Hanson, Gunnel
Andersson
• INRCA, Italian National Research Centre on Aging,
Italy: Sabrina Quattrini, Sara Santini, Giovanni Lamura
• Vilans, Centre of Expertise for the Long Term
Care, Netherlands: Roelf van der Veen, Marleen
Versteeg, Sabina Mak
Qualitative research project
the study focuses on the impact exerted by
incontinence care on the quality of life of
adult spouses, partners, children (or inlaws) caring for community dwelling,
cognitively and/or physically dependent
older persons (65+) living in urban areas
and suffering from urinary and/or faecal
incontinence on a daily basis
Research questions
•
What are the specificities of incontinence
care compared to other care tasks performed by
informal carers?
•
Which specific challenges and support
needs derive from it for carers providing support
to elderly with different characteristics?
•
How can these carers’ needs be met at
best?
48 interviews in total
• Face-to-face interviews carried out between
September 2010 and January 2011 in four
countries, each representing a different
macro-area of the European continent
• The main focus of the interview is upon the
experience of incontinence from the
caregiver’s perspective
Caregiver’s profile
In all countries women are prevalent:
100% in Italy, 70% in Slovakia, 80% in Sweden
and 67% in the Netherlands.
The mean age is:
Italy 57 years, Slovakia 59, the Netherlands 67
and Sweden 78 years
Caregiver’s profile
In Italy 31 % of the interviewed carers are
working full-time while the Netherlands has the
greatest percentage of those working part-time
(44%).
In Slovakia full-time, part-time, self-employed
are quite equally distributed and almost half of
the caregivers are retired (47%).
In Sweden all are retired
Caregiver’s profile
Relationship between caregiver and cared for
person:
the daughters are used to take for their old
parents in all countries (63%), while sons as
caregivers are few (3 in Slovakia and 1 in the
Netherlands). The 48% of the sample is married
with the cared for person, with a prevalence of
wives who care for husbands (38%). In Italy
there is only one wife.
Cared for person’s profile
• With the exception of the Sweden (11%), in all
countries the female cared for persons are
predominant: 77% in Italy, 65% in Slovakia and
56% in the Netherlands.
• Italy and Sweden have the higher mean age
among the Countries (84 years), followed by
Slovakia (77) and the Netherlands (80).
• The major part of cared for people has severe
cognitive problems, in particular 62% in Italy, 53%
in Slovakia, 22% in Sweden and 89% in The
Netherlands.
Most relevant aspects of the object of
the study
• caregiving history,
• daily routine of incontinence care,
• impact feelings and experiences of caregiving
for an incontinent older family member,
• formal and informal supports received in
caring
Sampling and recruitment
• Slovakia had no problem in finding caregivers
who fitted the profile and wanted to participate
in the study (17)
• Sweden had difficulties with recruiting caregivers
due to the lengthy process with securing ethical
approval and the committee’s requirement for
formal informed consent (9)
• The Netherlands had difficulties finding
caregivers, so they interviewed less caregivers
than expected (9)
• Italy found only female caregivers (13)
Reasons to take care
Sense of duty, love, marriage and prevention of
admission to a care or residential home. Most
caregivers found it natural, especially when care
had become gradually more intensive over time.
For almost none of the caregivers financial
aspects were a deciding factor.
Problems with incontinence (care)
Mostly related to have to clean and assist with
incontinence very frequently or at inconvenient
times of the day.
Back pain, pain of joints and tiredness, were
reported by the caregivers. Not only the
changing of pads gave problems, also the need
for constant watchfulness was considered a
major issue.
Restrictions
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constant worry for the partner
feeling tied at home
less social contacts
feeling locked inside the home
social isolation
trapped by a schedule for incontinence care
limitation in career
the need for reducing working time.
Feelings
The change in character and relationship had a
huge impact on the informal caregivers:
The relation between husband and wife had
become a relation of client and caregiver or parent
and child. Caregivers missed the love and affection
they used to have together.
All countries reported feelings of sadness, shame,
irritation, depression and humiliation for the
partner/spouse. These were mentioned by the
cared-for people but not always particularly related
to their incontinence.
Support
• Practical help from care professionals
• Advice in coping and assistance (respite care)
• Practical advice and instruction how to deal
with incontinence products and the
prevention of decubitus ulcers
Findings
The incontinence management is a burdensome
and a very time-consuming activity that
increases the difficulties deriving from
caregiving for an old disabled person.
Incontinence as a widespread and very common
disease among old and less old people, it is still
quite an unexplored item due its sensitive
nature.
Recommendations
• It is crucial that professionals recognize and value
family caregivers of older people and acknowledge
their expertise. They should reach out and find carers
early on in their caring as many family caregivers are
elderly themselves and have health problems.
• For carers with responsibility 24 hours a day 7 days a
week, it is important to be given sufficient help and
support so that they are able to continue caring and
maintain their own health. Thus in education and
training programs for professionals knowledge of the
carers’ situation should have much more attention.
Recommendations
• Policymakers should be more aware of possibilities to relief
the burden of so many caregivers of patients dealing with
an illness in combination with incontinence. They should
look into more solutions on regional and local levels for
respite moments for the informal caregivers as well as
other support systems for the family networks.
• More awareness of the growing problem of incontinence
should be tackled, and guidelines for distribution of
adequate information of services and good examples of
incontinence care.
• In research it would be useful to deepen some aspects of
the incontinence care in relation with an illness such as
dementia.