Archives of Gerontology and Geriatrics 63 (2016) 92101

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Archives of Gerontology and Geriatrics

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Impact of incontinence on the quality of life of caregivers of older

persons with incontinence: A qualitative study in four European
countries
Sara Santinia,* , Gunnel Anderssonb , Giovanni Lamuraa
a
b

INRCANational Research Centre on Aging, Via S. Margherita 5, 60124 Ancona, Italy

rebro University Hospital, Department of Urology, Sweden

A R T I C L E I N F O

A B S T R A C T

Article history:
Received 5 March 2014
Received in revised form 28 October 2015
Accepted 29 October 2015
Available online 10 November 2015

The aim of this study was to assess the impact of incontinence management on informal caregivers of
older persons with incontinence. In order to investigate this phenomenon in different welfare systems
via qualitative interviews and a content analysis methodology, the study was carried out in four European
countries (Italy, the Netherlands, Slovak Republic and Sweden). To this purpose, 50 semi-structured
interviews were conducted with spouses and children of older people receiving their help to manage the
consequences of involuntary urinary and/or faecal leakage. Findings show that incontinence has a
remarkably strong effect on caregivers quality of life, because it results in progressive social isolation,
causing them nancial problems as well as psychological and physical exhaustion. The lack of
appropriate support and the general silence regarding the problem, which is still considered a taboo by
many, aggravate the caregivers situation. It is therefore crucial that caregivers can count on a strong
public and private support network, appropriate information and suitable incontinent products, in order
to better handle incontinence and care tasks in general.
2015 Elsevier Ireland Ltd. All rights reserved.

Keywords:
Older people
Incontinence
Caregivers burden
Isolation
Supports
Pad
Taboo

1. Introduction
1.1. Incontinence among older people
The International Continence Society (ICS) denes Urinary
Incontinence (UI) as any involuntary loss of urine (Abrams et al.,
2002). According to the standardisation of terminology given by
the ICS (Tarnay & Bhatia, 2012), there are ve types of UI: Urgent
Urinary Incontinence (UUI), Stress Urinary Incontinence (SUI),
Mixed Urinary Incontinence (MUI), Nocturnal Enuresis (NE), and
Continuous Urinary Incontinence (CUI).
Each UI typology has different signs, symptoms, conditions and
treatments. Around the world, UI affects from 3% to 23% of men and
from 11% to 52% of women (Burti, Barsante Santos, Pereire, Zambon
& Marques, 2011). Prevalence rates are higher in older age. Older
women are more likely to report mixed and urgent incontinence,
while young and middle aged women generally report stress
incontinence. For daily incontinence, prevalence ranges from 5%
to 15% among middle-aged and older women (Abrams, Cardozo,
Khoury, & Wein, 2009). UI is more frequent among persons

* Corresponding author. Tel.: +0039 071 800 4798; fax: +0039 071 35941.
E-mail address: s.santini2@inrca.it (S. Santini).
http://dx.doi.org/10.1016/j.archger.2015.10.013
0167-4943/ 2015 Elsevier Ireland Ltd. All rights reserved.

residing in long-term facilities, especially if they suffer from

dementia, limited mobility and co-morbidity conditions. Depending upon the methods used to ascertain incontinence, prevalence
in residential settings generally reaches a rate of 5080% (Abrams
et al., 2009).
Common causes and risk factors of UI include very old age,
followed by pregnancy and vaginal deliveries, obesity, changes in
hormone levels, hysterectomy and menopause, diabetes, urinary
tract infections, neurological illness, cognitive and physical impairment, smoking, family history, and genetic and ischemic heart
disease (Abrams et al., 2009). This also concerns the prevalence of
faecal incontinence, as 16.9% of those over 75 years old people report
this problem, which in turn is associated with other co-existing
illnesses and vulnerabilities (Stenzelius, Mattiasson, Hallberg, &
Westergren, 2004).
Incontinence has been identied as an impairment that can
have profound psychosocial implications, including social isolation
due to a fear of bad odours, anxiety, embarrassment, stigma and
lower self-esteem (Sanders, Bern-Klug, Specht, Mobily, & Bossen,
2012). Incontinence is also a predictor of institutionalisation
among the general older population and of death among
institutionalised older patients (Tilvis, Hakala, Valvanne, &
Erkinjuntti, 1995).

S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

In the light of the increasing ageing of the world's population

by 2050 in the countries belonging to the Organisation for
Economic Co-operation and Development (OECD) the population
over 80 years of age is expected to increase from 4% to 9.4%
(Colombo, Llena-Nozal, Mercier, & Tjadens, 2011), with particularly
high levels in European countries (Eurostat, 2012)incontinence is
going to become a more and more pressing problem as it has
societal, psychological and economic implications. A correct,
comprehensive management of incontinence is therefore urgently
needed, to save costs and reduce the negative impact on all parties
involved.
1.2. The additional burden affecting caregivers of older persons with
incontinence and its impact on their quality of life
Although elder care presents some differences across countries,
in Europe informal caregivers (represented primarily by children
and spouses) are the main care providers. In fact, throughout
Europe, the tendency to increase home care services for the most
vulnerable elderly is widespread, This occurs for two main reasons:
to ensure a better quality of assistance and to reduce the costs of
institutionalisation. Northern European countries (in particular
Denmark and Sweden) started this process many years ago, while
Southern European countries (e.g., Italy, Spain and Portugal),
where the role of informal caregivers is still prevalent, have been
following this trend only recently and with more difculty
(Melchiorre, Di Rosa, Chiatti, & Lamura, 2010).
As a consequence, an increasing number of frail older people
affected by co-morbidity and incontinence, and dependent on
nursing care and rehabilitation, live at home with their families,
who frequently bear the brunt of their relatives health problems.
Across the OECD, more than 10% of all adults are involved in
informal caregiving as family members or friends. This gure
varies from country to country, with the peak level of 16% recorded
in Italy and Spain (countries characterised by a familistic welfare
model) and a minimum of 8% in Denmark. Caregivers provide help
with the basic activities of daily living (ADLs), and high intensity
caring can lead to reduced rates of employment and working
hours, thus putting caregivers at risk of poverty and of deteriorating their mental health (Colombo et al., 2011).
Many studies have shown that caregiving for a relative with
incontinence, in particular, can have a greater negative impact on
physical, psychological, social and nancial status than caregiving for
a relative without incontinence (Gotoh et al., 2009), with signicant
differences in terms of quantity of informal care provided and related
nancial costs (Cassells & Watt, 2003; Langa, Fultz, Saint, Kabeto, &
Herzog, 2002). Physical exhaustion (Lane, McKenna, Ryan, &
Fleming, 2003) and the lack of sleep and leisure (Brittain & Shaw,
2007) are among the most important consequences of incontinence
management. This is also related to the constant need for
watchfulness (Cassells & Watt, 2003; Hayder & Schnepp, 2008),
which makes incontinence one of the main reasons for placing an
older patient into an institution, especially individual is also
experiencing dementia (Thomas et al., 2004). Furthermore, the
embarrassment experienced with regard to leakages and bad odours
may lead to decisions that can conne both the caregiver and the care
recipient within the boundaries of their home, thus leading to social
isolation (Cheater, 2008) due to the difculty of maintaining a decent
social life (Cassells & Watt, 2003).
Among the strategies indicated as appropriate for caregivers to
tackle the above difculties, some refer to the use of high quality
absorbent products as these prevent wet beds and negative events
affecting social contacts (Lane et al., 2003). Other underline the
importance of opportunities for caregivers to ask condential
questions to nursing specialists, counselling agencies, support
groups and educational links, also with regard to hints to protect

93

caregivers health (Steiner et al., 2008). In this respect, the

possibility to speak about incontinence seems to have increased in
many developed countries compared to twenty years ago, thanks
to the visibility given to the issue by the mass media (e.g.,
magazines, newspapers, radio and television), especially for
women, men are still less available and open in this respect
(Molander, Sundh, & Steen, 2002).
Despite these improvements, only a minority of women ask
their physician for help. Incontinence remains a taboo and the level
of shame and embarrassment among sufferers is signicantly
higher than that reported for depression and cancer (Elenskaia
et al., 2011). Many patients are still not properly informed about
the cause of and treatment for incontinence. Affected individuals
still think that incontinence is an unavoidable age-related problem
and only feel forced to seek help when leakages become worse
and more frequent (Teunissen, van Weel, & Lagro-Janssen, 2005).
1.3. Social and health services for older people affected by incontinence
in four European countries
In order to contextualise the qualitative data collected, the
survey carried out by van der Veen et al. (2011) in four European
countries contains a specic section dedicated to social and health
services for older persons with incontinence and their families.
Specic services for incontinent people were found in all involved
countries including the entitlement to a free supply of incontinent
products according to the patients needs, as prescribed by a
General Practitioner or medical specialists.
In each country incontinence products are purchased following
a specic procedure, based on Municipal (Sweden), Regional (Italy)
or National (Slovak Republic) rules, which also set up countryspecic admission criteria to the delivery of continence products
by the public health system. In Sweden the number of incontinence
pads depends on individuals needs, as prescribed by the
urotherapist, district nurse or other registered nurse who has
taken a specialist incontinence education course. In the Slovak
Republic the number of pads is determined on the basis of the
severity of the incontinence, while in Italy the supply is not based
on different levels of need. In the Netherlands many of continence
aids can also be purchased on web shops.
The main difference between countries lies in the number and
quality of the guaranteed products: for instance, in Italy continence
products are generally of a poorer quality than those provided in
Sweden, where greater attention in the purchasing process is paid
to factors such as quality, environmental factors and price. In the
latter country the professional that prescribes the assistive devices
must be able to assess the users needs, test them to ensure that the
product(s) are individually suited to the particular user in question,
instruct and train the user and subsequently follow up and
evaluate the prescribed products.
1.4. Support for caregivers
Since this study seeks to understand the impact of incontinence
on informal caregivers quality of life, special attention was paid to
services and supports addressing the caregivers of older people
suffering from incontinence in the various countries.
In Italy, services specically addressing the needs of family
caregivers of older people are rare, and only present in some of the
more advanced regions in the northern part of the country.
Nevertheless, a number of laws were introduced in 2000 to
promote a better reconciliation between paid work and family care
(Santini, Principi, & Lamura, 2011). In the Slovak Republic,
attention to family caregivers seems to reach a more structured
level. People facing social hardship are entitled to a nursing
allowance, a which is means-tested program in which the amount

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S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

of nursing received depends on the income of the person receiving

care. For family caregivers who do not work, the government pays
obligatory social and healthcare contributions. Since the late 1990s
in Sweden, municipalities have set up projects which often involve
a dedicated care practitioner, called family care advisor, to work
specically with family caregivers who, in many cases, assist older
people. Respite care services are offered in the vast majority of
Swedish municipalities, although the range and quality still varies
widely across the country. In the Netherlands, caregivers can count
on an annual monetary allowance of EUR 250 and on the support of
a case manager who sets up a diagnosis trajectory, coordinates the
care provided and informs and advises both the client and the
caregiver. Carers can also call the caregivers help-line when they
have questions or need support, or when they just want to tell their
story.
2. Materials and methods
The ndings reported in this article refer to a study1 carried out
in four European countries (Sweden, the Netherlands, Slovak
Republic and Italy), focusing 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 people (65+) living in urban areas and suffering
from urinary and/or faecal incontinence on a daily basis.
The study principally aimed at identifying the effects of
providing care on family caregivers in terms of emotional, social
as well as physical outcomes, in order to better understand the
measures and interventions that might improve the current
situation. We sought to answer the following research questions:
 What are the specics of incontinence care compared to other
care tasks performed by informal caregivers?
 What specic challenges and support needs derive from
incontinence care for caregivers providing support to older
people with different characteristics?
 How can the needs of these caregivers best be met?
While the study gathered both qualitative and quantitative data
via semi-structured interviews (see further below), this article
focuses primarily on qualitative ndings, using some of the
collected quantitative data only to provide an overall, descriptive
framework to better contextualise the investigated phenomenon.
2.1. Sampling and recruitment
The participants consist of women and men (aged 18+) who are
the primary family caregivers of an incontinent parent, parent-inlaw or spouse/partner (aged 65+) who is also cognitively and/or
physically disabled, living at home in urban centres, and requiring
daily toilet assistance due to their urinary and/or faecal incontinence. Additional requirements included gathering 16 interviews
per country, from at least 2 caregivers of cognitively impaired
cared-for persons and at least 2 husbands/male partners and
2 sons or sons-in-law.
Due to difculties encountered by the various research groups
during data collection, the nal sample is composed of 50 persons
instead of the originally planned 64. According to the sample

selection criteria, the eligible interviewee was the family member

who regularly helped the older person with intimate hygiene due
to his/her incontinence problems, directly carrying out at least
some of the related tasks, daily or very frequently during the week.
In Italy it was difcult to nd family caregivers matching these
characteristics, because in Italy it is very common to delegate this
kind of activity to a migrant care worker when the level of
impairment is very high and requires constant watchfulness and
physical efforts (Chiatti et al., 2013). Furthermore, it is even more
difcult to nd male caregivers, due to a cultural pattern that
consider women naturally inclined to provide informal care (Del
Boca and Rosina, 2009). The Swedish research team encountered
another type of difculty, which was related to the lengthy
procedure for obtaining the necessary ethical approval, an
inconvenience which ended up remarkably with reducing the
time available to conduct the interviews. In the Netherlands, some
of the sampled subjected did not want to participate in the study,
as they felt ashamed and did not want to report their views about
the topic. No peculiar problems were reported during recruitment
in the Slovak Republic. An overview of the interviews planned and
conducted in each country is provided in Table 1.
Several recruitment settings were employed, including: home
care organizations, general practitioner clinics, hospital wards,
voluntary associations, and organizations for home care and
hospitals. Other strategies were employed including the recruitment of caregivers already interviewed in previous studies with
characteristics compatible with the selection criteria and word of
mouth. In Italy and the Slovak Republic, in addition to the social
and health organisations mentioned above, information was also
gathered via municipalities and snowballing.
Ethical approval was sought from respective Research Ethics
Boards in Italy, Slovak Republic, and Sweden. Ethical approval was
not a requirement in the Netherlands for the study to proceed.
2.2. Data collection
Data were collected by means of semi-structured face-to-face
interviews carried out between September 2010 and January 2011.
In each country, two researchers (sociologists, psychologists and/
or nurses) with an expertise in qualitative research methods
performed the recruitment of participants and carried out the
interviews, following an agreed topic guide (see Appendix).
The interview template was preceded by a brief guide for
interviewers and included 17 questions on interviewees characteristics (age, gender, marital status and family relationship with the
cared for person), to be administered for screening the eligibility of
the person at the moment of the rst contact by telephone.
The topic-guide was based on the model of the problemcentred interview (Witzel, 2000), which is a methodological tool
aimed at reconciling deductive and inductive research methods,
i.e., quantitative methods based on the thought that knowledge is
derived from a priori categorization and qualitative methods that
build theories from sensible data coming from the reality
investigated (Popper, 1934). This tool thus allows researchers to
use a number of interviewing techniques in one interview,
beginning with a narrative approach (introductory question), then
a thematic interview (ad hoc questions) and nishing with a
Table 1
Number of interviews per country.

1
The data reported in this article were collected as part of the Quality of life in
caregivers of dependent people affected by incontinence in Europe project, funded
by SCA Hygiene Products AB and carried out by EUROCARERS. This article was
prepared on behalf of the SCA-EUROCARERS partnership, represented by following
teams: for Italy: Giovanni Lamura, Sabrina Quattrini and Sara Santini; for the
Netherlands: Roelf van der Veen and Sabina Mak; for Sweden: Elisabeth Hanson and
Gunnel Andersson; for the Slovak Republic: Bernardina Bodnarova.

Interviews

Country
Italy

Netherlands

Slovak Republic

Sweden

Planned
Performed

16
13

16
9

16
17

16
11

Total

64
50

S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

collection of socio-statistical information at the end of each

section. In addition to open-ended questions, closed-ended
questions were not in a dedicated section but rather, were
throughout the topic-guide in order to deepen particular
dimensions. Some quantitative questions, therefore, concerned
kinds of helps received and supports provided by caregivers
(Eurofamcare Research Consortium, 2004). The impact of caregiving on family caregivers was assessed through the COPE INDEX
usage (McKee et al., 2003): the expression older relative was
changed into older relative with incontinence in order to
circumscribe the central problem under scrutiny and help
respondents refer to it directly and avoid generalisations.
Demographics and health status were asked for both caregivers
and the older persons; data on older person's cognitive and
psychological conditions, behavioural problems and level of
dependency regarding activities of daily living were reached
through the Barthel Index (Mahoney & Barthel, 1965). All
information was provided by caregivers, based on their perceptions and experiences.
The thematic areas of topic-guide were based on evidence
coming from our review of the international literature, which
guided our interviews with caregivers regarding their perspectives
and experiences with incontinence. Topics included questions to
address three study objectives: caring history and daily routine of
incontinence care; impact feelings and experiences in caring for an
incontinent older family member; and formal and informal
support received in caring. The main focus of the interview was
the experience of incontinence from the caregivers perspective.
In order to ensure the highest contents equivalence among the
four national versions, this research tool was initially written in
English, translated into national languages and then backtranslated into English by a different researcher on each team.
The translated interview guide was nally pilot-tested with at least
one caregiver per country to determine the acceptability of its
contents.
2.3. Data analysis
The analysis of the collected qualitative material was based on
the Grounded Theory approach, as we aimed to study both the
interactions among social actors (i.e., caregivers, older relatives
and other persons supporting them) and the processes in which
they are immersed (Strauss & Corbin, 1990). In order to better
understand possible causal relationships, we investigated the
social behaviours of family caregivers by rst describing the
who, what and where of analysed events and situations, to
then try to explain why caregivers act and/or feel in a specic way
(e.g., prefer one service instead of another, indicate some activities
as heavier than others, describe in a certain way the impact of their
personal relationship with the care recipient regarding the care
dynamics). We did not limit ourselves to merely report and
describe caregivers opinions but tried to also conceptualise them,
i.e interpreted their thoughts by working on second level
concepts (Ricol, 1998), thus identifying those elements that
had most impact on caregivers quality of life as well as the main
coping strategies implemented by them. To this purpose, data were
analysed through the Qualitative Content Analysis method
(Mayring, 2000, 2008) to provide appropriate answers to the
research questions indicated above. The units of analysis and the
code unit were dened from the smallest (the word) to the biggest
(the whole interview). Each extracted fragment of text was named
by categories and (where necessary) sub-categories. Code words
were arranged by subject, and organised in a code-tree. Texts and
fragments still attached to codes were read again: all textual data
were read and variables were labelled and categories were
assigned. A system of main categories common to all countries was

95

built on the basis of the topic guide (i.e., according to the predened topics of medical history, problems, impact and
daily routine), while two additional levels with sub-categories
were built after the material was read in its entirety. This followed
the evidence emerging from the specic data based on each
countrys national features, leading to new categories based on the
combination of initial categories.
In each country the interviews were audio-recorded and
transcribed verbatim. The analysis was supported by the
MAXQDA software for classifying, connecting and combining
data. The researchers who carried out the interviews also
transcribed the textual material and carried out its analysis, using
the same, common code system (both within each national
research team and across the teams building the research
consortium). After a long debate, the code system was agreed
upon, which initially led to agreement on the main categories, and
later to nalising the sub-categories once the analysis was
progressing, by comparing the sub-categories gradually arising
in the different national contexts.
According to the four criteria identied by Lincoln and Guba
(1985) for assessing the trustworthiness of qualitative studies (i.e.,
credibility, transferability, dependability and conrmability), this
inquiry attempted to match them by both ensuring methodological
rigor and tracking internal processes (Shenton, 2004; Golafshani,
2003). The credibility of the study was sought through the use of
several expedients. The rst lied in the use of a data collection tool
based partly on questionnaires already successfully applied in
previous projects concerning caregiver burden and quality of life.
This kind of data was used for conrming or not what interviewees
stated during the qualitative interview. The latter had a structure
that allowed for a thick description of the care situation (in terms
of economic, social, family and health conditions potentially
affecting it). Credibility was also reached through frequent
debrieng sessions between researchers, the senior coordinator
and peer scrutiny of the research project. Indeed, national research
teams included a senior researcher for the project coordination
and one researcher for data collection and analysis who was
especially skilled in qualitative research techniques. The latter was
responsible for ensuring quality during the data analysis and
interpretation through frequent discussions and constant reective commentary among teams and also within each team with the
senior researcher in order to limit the investigators bias. As all
researchers involved in this study had worked for a long time in the
area of informal caregivers for older people and had a longstanding
experience in using a qualitative approach, they were already wellacquainted with the culture of participants and their concerns
knew in-depth. Nevertheless, the research consortium met in Italy
before starting the data collection and researchers went over the
protocol, the Problem Centred Interview tool and the active,
effective and empathic listening technique, leaded by an Italian
researcher involved in the study. Researchers also dened and
agreed upon the rules for data transcription and analysis.
Furthermore, the transferability criterion was achieved through
the examination of previous research ndings: a literature review
was carried out in order to assess if the achieved results were
congruent with those reached by past researches. The purpose of
this comparison with other ndings referring to the same issue but
emerging in other cultural and geographical contexts, was twofold:
on the one hand, it helped to design a protocol allowing for the
transferability of the study; on the other hand, it made researchers
aware that the obtained ndings should be considered as a
baseline contribution to be compared with future studies for
further developments.
Study dependability was addressed thanks to the description of
research design and its realisation, and details of data collection
and analysis processes.

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S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

Table 2
Caregivers characteristics (n = 50).
Italy

Netherlands

Slovak Republic

Sweden

Total

57.0

66.7

59.06

78.0

65.19

0
13 (100%)
13 (100%

3 (33%)
6 (66%)
9 (100%)

5 (29%)
12 (71%)
17 (100%)

1 (9%)
10 (91%)
11 (100%)

9 (18%)
41 (82%)
50 (100%)

12 (92%)
0
0
1 (8%)
13 (100%)

8 (89%)
1 (11%)
0
0
9 (100%)

14 (82%)
1 (6%)
2 (12%)
0
17 (100%)

11 (100%)
0
0
0
0 (100%)

45 (90%)
2 (4%)
2 (4%)
1 (2%)
50 (100%)

Family relationship to the cared for person

Husband/wife
1 (8%)
Daughter/son
12 (100%)
Daughter-in-law
0
Total
13 (100%)

6 (66%)
3 (33%)
0
9 (100%)

8 (47%)
8 (47%)
1 (6%)
17 (100%)

10 (91%)
1 (9%)
0
11 (100%)

25 (50%)
24 (48%)
1 (2%)
50 (100%)

Mean age (years)

Gender
Male
Female
Total
Marital status
Married
Single/never married
Divorced/separated
Widowed
Total

As for conrmability (objectivity), this represents a controversial issue for a qualitative study, and as such is a difcult issue to
solve. Nevertheless, the consortium tried to overcome this problem
by justifying the choice of the methods adopted, admitting the
researchers predispositions, explaining the reasons behind the
decisions made, and identifying both strengths and weaknesses of
this approach.
2.4. Sample description
Women made up the large majority of the sample across the
four countries: over four-fths of all interviewees were women
(see Table 2). Participants in Italy were primarily daughters in their
late 50s and in Sweden all female participants were wives in their
late 70s, while Dutch and Slovakian caregivers showed a more
balanced composition for the two groups.
2.5. Impact of incontinence on caregivers daily lives
2.5.1. Caring tasks and difculties in daily life
In all countries, it was not very easy for caregivers to distinguish
incontinence care tasks from other forms of help they provide to
their loved one. Generally, the effort required by the caregiver for
toileting the incontinent person depends on the type, level and
frequency of leakages and on the general health condition of the
person who is being cared for.
Table 3 shows the type of incontinence suffered by the care
recipients, highlighting that the great majority of them (two thirds)
are affected by both urinary and faecal incontinence. This means
care recipients have to be changed and washed many times a day,
requiring constant watchfulness and a substantial effort from their
caregivers.
The daily routine activity most frequently reported by caregivers of family members with incontinence is cleaning and
washing the care recipients, their clothes and bed sheets. The
caregivers do the cleaning and changing of incontinence products
in different settings (in the bedroom or the bathroom) and with

different frequency, depending on the recipient's mobility (i.e.,

whether he/she can walk to the toilet or bathroom or get up from
bed by him/herself or with the caregivers assistance). When the
recipients can walk to the bathroom on their own, they need
someone there to remind them what they need to do.
Some caregivers position their cared for relatives on the toilet
several times a day, or they engage in preventive methods to avoid
having to clean them (e.g., they try to encourage them to control
the stools through frequent reminders to use the toilette):
I have to dry his backside and change his pad. Hes made clean in
the morning by them (home care nursing) and in the evening. But
things can happen during the day and so then I wash him down,
dry him and put on a clean pad. Things can happen at night too, so
its round the clock. (Sweden)
Beyond the activities related to intimate hygiene and the
changing of pads, caregivers help with feeding, dressing, moving
and doing all activities of daily living that their relatives are not
able to do by themselves. Some caregivers also deal with
bureaucratic aspects of care in order to obtain care allowances
and other supports from the competent authorities. All caregivers
stated that they were used to carrying out household tasks,
administration and activities around the house, ordering incontinence products and arranging home care.
As a consequence of their caring role, many caregivers reported
physical, emotional, and practical challenges in managing incontinent relatives. Physical problems were very common amongst the
caregivers in the different countries: back pain, tendinitis and
tiredness are the rst consequences of the caregivers physical
efforts to move disabled older people. Emotional problems, on the
other hand, were often the consequence of anxiety, widespread
tension, sadness and strain. Practical problems included, for
example, having to bear the smell from urine or faeces and having
to deal with the negative consequences of unsuitable continence
devices. As a consequence, managing incontinence had a large
inuence on the daily organisation of many caregivers, because
they had to schedule all other tasks on the basis of pad changes:

Table 3
Type of incontinence.
Type of incontinence

Italy
n (%)

Netherlands
n (%)

Slovak Republic
n (%)

Swedish
n (%)

Total
n (%)

Urine only
Urine and faeces
Total

3 (23%)
10 (77%)
13 (100%)

4 (44%)
5 (55%)
9 (100%)

5 (29%)
12 (71%)
17 (100%)

5 (45%)
6 (55%)
11 (100%)

17 (34%)
33 (66%)
50 (100%)

S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

Anyway, its something I think about all the time. If shes wet, I
leave everything and go and change her pad straight away (Slovak
Republic)
Many Italian caregivers reported that they did not use the right
or most appropriate incontinence products when the incontinence
problems started, particularly due to their lack of knowledge and
experience. Some of them did spend time and effort searching for
the absorbent product that best suited their relatives needs, such
as for instance hypoallergenic products in cases of users with
sensitive skin, or absorbent pants (pull ups), which seemed to be
preferred by older people with some partially remaining cognitive
abilities:
Caring for an incontinent person is an important skill which,
unfortunately, no one teaches you [ . . . ]: how to cut the bottom
absorbent pad that you put double or to fold the edges from the
inside, otherwise the urine escapes. I mean there are so many
trivial things, which we were not told, and Im upset with the
health operator. I mean, why isnt there anyone explaining this to
us? [...] (Italy)
One caregiver reported that her mother did not accept wearing
pads and the caregivers efforts were aimed at preventing her from
tearing the pads into bits or from hiding them. Changing pads and
cleaning the older relatives became more difcult in cases where
the latter were not cooperative.
2.5.2. Family relationships
Many caregivers reported drastic changes in their relationship
with their older parents,that seems to be turned upside down by
the changes imposed by the new caregiving needs and activities.
While in the past parents used to help their children, now they are
the ones needing care and support, thus children become parents
and parents become children. Such a role change caused suffering
and embarrassment to many caregivers:
We have double roles, and they overlap each other in the wrong
way. Sometimes, I would still like to have my strong mother who
can support me, because I also need help in one way or another.
(Sweden)
Partners acting as caregivers felt their love relationship had
turned into a caregiverclient relationship or a parentchild
relationship. Some people with dementia who were being cared for
did not show their love anymore or did not seem to bother with
their caregivers well-being. However, a few caregivers still found a
special way to connect with their husbands and wives by hugging,
talking and making eye contact, and two husbands still felt really
proud of their beautiful wives.
Some children said their relationship had automatically
changed or even had to change before they were able to provide
this type of care. In Italy, for instance, the main caregivers (often a
women) were used to deaingl with family relationships and
mediating the relationships between their parents, who were
upset by the disease. Even if caregivers families felt more united in
the common effort of caring for the loved one, in the majority of
cases, the presence of a disabled older person, the fatigue and the
lack of leisure might created tension and anxiety, which often
degenerated into arguments, as reported by one middle-aged
women who struggled to nd a new balance in the relationship
with her mother (affected by Alzheimers), father and sister:
And even the relationship with my father has become a little
harder, maybe because each of us sees the disease in a certain way
or we accept it in a different way. Dad still does not accept my
mothers disease so he insists that she will get better. But
unfortunately she is not improving and he does not accept it. We
tell him: You must accept it, you must accept the Migrant Care
Worker and Mums condition... Even though it hurts me as well,

97

because I havent completely accepted it... Sometimes I think we

could have done more [crying]. The relationship has certainly
changed for everyone. (Italy)
2.5.3. Social life
Across the four countries, caregivers reported that caring poses
challenges to maintaining an adequate social life, affecting for
example their freedom to leave their homes, meet friends, and
travel. Moreover, some caregivers often did not have any physical
and emotional reserves left to think about going out or to actually
do it. Their social life has changed since beginning to care for close
relatives with incontinence, and some social activities have been
stopped altogether:
What weighs on me a little more is the lack of freedom. My
husband use to be a corporate ofcer with an excellent pension, I
could have led a completely different life. (Italy)
Some interviewees reported that around-the-clock care for a
person with incontinence is physically and emotionally demanding, sometimes referred to the role as being trapped at home:
...sometimes I think that if this hadn't happened, life would be
different, we could go out for a walk, or visit friends, or travel. This
situation restricts us a little bit, unfortunately, thats it, and it will
not change, but I will stand up again and continue, there is nothing
to speculate about (laughing). (Slovakia)
All caregivers from Sweden explained that they were largely
tied to their home because they were the main caregivers: they
could leave their relative for an hour or two, but did not feel
comfortable leaving their relatives for longer periods of time:
Well, I feel that I have less freedom . . . but I cant really blame
that on the incontinence other than that its his overall illness.
It's everything together.(Sweden)
Caregivers from the Netherlands said that their social life had
changed mainly due to factors other than incontinence care, such
as the general poor health condition and high disability of the
person receiving care.
2.5.4. Financial situation
In Italy, caregivers experienced nancial difculties more
frequently than in the other countries. Financial matters concerned
both direct and indirect consequences of care management.
Direct effects indicated those resulting from incontinence, when
for instance the older person did not receive the free supply of
diapers provided by the health service, or when the delivered pads
were of poor quality or not enough in terms of quantity. In these
cases, caregivers were forced to buy additional or better products:
Financial hardship, as the pads provided are not enough. A pack of
pads costs 2830 Euros. The hypoallergenic ones are ne as she got
some irritation from the other ones. The brand is [redacted] with
three absorbency levels [the son-in-law speaking], because those
with only two levels are not strong enough. With those it is ne,
they do not break, they are made of a special paper material which
does not irritate the skin. We alternate them with the free-ofcharge ones. (Italy).
The nancial consequences were indirect, when caregivers
neglected their jobs due to their caring commitments. For some
working caregivers it was very difcult to reconcile work and care,
up to the point of experiencing some nancial consequences:
I have to reduce the number of hours spent at work, but I MUST
have the job, I need it to live (Slovak Rep.)
In the Netherlands some informal caregivers mentioned
expensive aids they had bought for their partner or relative, such
as special cushions to prevent bedsores.

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S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

2.5.5. Psychological burden and caregivers feelings: between love and

anger
Psychological burden has to be taken into account in order to
understand the general circumstances of caregivers. In most
interviews, it was not easy for the caregivers to reect on their
personal feelings related specically to incontinence, which is
perceived as part of the complex situation linked to disability. On
the whole, there are various stages of the main caregivers path of
acceptance of an illness affecting both the sensory experiences,
such as tolerating the new smells, as well as the emotional
experiences, such as the displeasure of seeing their loved one no
longer being self-sufcient:
Incontinence is the worst aspect of caring [...] Incontinence is
something very ugly, very bad both for them and for us, because
there are some intimate aspects ... now Im use to the smell.... at rst
it was revolting, I was almost throwing up, but now my nose is use
to it and I can handle it.... (Italy)
The onset of the disease, in particular, is also the most difcult
time for the caregiver, who must work out what is happening,
accept the new condition and organise daily life differently.
Negative, positive and ambivalent feelings related to caring were
found in all countries. Negative feelings concern a sense of
oppression, pain, resignation, desperation and anger:
I get less rest now than when I worked. Im a bit overtired, I cry so
easily but I dont tell anybody that Im sad. (Sweden)
Some caregivers feel oppressed by the daily heavy task of caring
as well as by the sadness for the older persons situation; others are
anxious and concerned about the future; others get angry because
of their lack of freedom as they are not able to go away, to spend
time engaging in activities in their own interests:
Caring is certainly very hard and difcult. One has to adapt to so
many things, you have to swallow and bear a lot. But when in the
future they arent there any more you cant blame yourself for
anything, youre at peace with yourself and you repay yourself for
all the sacrices youve had to make. (Italy)
Disability is the main cause of the problem for caregivers, rather
than incontinence, which is perceived more as a consequence.
There is also resignation, sadness and fear of not being able to
manage the older person:
Im like a little rubber band with a weak spot, tears come over and
over again nowadays. (The Netherlands)
Nevertheless,many caregivers feel good when they spend time
with their older relatives. They feel love and affection, want to care
for them and do it by their own choice:
A beautiful thing, a nice experience, a warm welcome, feeling I
love her a lot but also that she loves me a lot. So the experience is
mostly related to the particular sphere of love [ . . . ] You have to
remember how much you loved her when she was healthy and
remember that love multiplies while you are caring for her as it is
such a great gift to be able to volunteer for a woman you love and
who loves you. (Italy)
Some informal caregivers found it difcult to name positive
aspects of caring, while others really focused on these positive
aspects, were glad to help their loved one and to have them around.
They did not want to complain, but wanted to approach the
situation positively. A woman caring for an older parent affected by
dementia explained that she tried to be strong, but reported feeling
very sad and cried as she explained her situation:
It wells up inside of me as soon as . . . . I try to be strong for
everyone. Ive a grandchild who gets so very sad, she cant be near
him without crying. And my daughters also started being like this
and so she just starts crying when theres something to be done. I
have to be a bit hard myself, to stand rm. I'm one of those people

wholl x everything themselves. Stupid, though, sometimes.

(Sweden)
Ambivalent feelings can also occur. Someone felt a mix of
satisfaction and anger, while others were morally gratied but also
nervous and exasperated by their caregiving responsibilities:
Every caregiver has had such thoughts. It comes to us all at some
time. He/she just says I am fed up with it, yes, but...so far, it has
always helped me and my wife as well, the relationship that we
have, we deal with all problems together, we make coffee and sit
together at the table when my mum goes to bed, and we talk about
everything and always nd a solution. And when we get up in the
morning we are glad that Mum is still here. (Slovakia)
In the Netherlands, a few caregivers sometimes wished they
could give up caring, because they felt overburdened. However,
they realised that in that case, their loved one would have to move
to a residential or nursing home. Others stated that there were still
enough reasons to keep caring, such as the feeling of belonging
together or of still receiving enough help from others which
enabled them to keep caring. Still others were uncertain about
holding on in the near future.
In Sweden, several caregivers expressed that they were, for the
most part, concerned mainly with maintaining their relatives
integrity. They were aware that it was not an easy situation at all for
their relative, as prior to their illness they had no incontinence
problems, thus it was a signicant change for them as well. Several
caregivers explained their difculties by stating that they tended to
grit their teeth and simply got on with caring.
2.6. Support in caring
With regard to what could be a support in caring, two aspects
were commonly identied by caregivers across the four countries.
First, all caregivers shared their concerns about not being left
alone in dealing with incontinence, and that their loved ones
disability was an important aspect of the care experience. Second,
for most caregivers, pads represented the most important
strategy to manage urinary leakages. Many of them highlighted
the importance of choosing the most appropriate and absorbent
product in order to avoid additional cleaning. Other strategies
that were considered helpful for daily living across countries
included the use of male urinals, commodes bath chair, shower
chair, armrest on the toilet, canes, walking frames, lifting hoist
and ceiling lifts.
Across the four countries, caregivers mainly received assistance
from the informal care sector that included family networks and
friends. There were differences, however, in the types of
individuals in the family or friend network who provided
assistance and in the extent of help provided to the caregiver.
For instance, caregivers from Italy described that their friends
mainly provided emotional support by asking them information
about the older person's condition, calling and sometimes visiting
care recipients. However, they were not involved in practical
terms:
[ . . . ] Friends are a great moral rather than practical help: they
call us, visit us, they ask us how it's going. Yes, it is worthwhile. We
feel supported by our family as it is big and there are many of us.
(Italy).
In most cases, the family is involved in practical matters, even if
the caregiver very rarely delegates the changing of pads to other
family members, especially if they are male. In all Italian cases, the
family network offered psychological and practical support, but
the migrant care worker, hired by the caregivers when they are
employed and cannot count on other kinds of family support,
represented the most useful support. Those who do not receive

S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

help from a migrant care worker would like to count on him/her at

least a few hours a day:
I visit my father every day, but the migrant care worker is always
there with him. I spend all my Sundays with him and two
afternoons a week when the migrant care worker is on leave.
Nevertheless, whenever I visit him I do everything which needs to
be done. (Italy).
In the Slovak Republic, family members were the main (and
often the only available) support to the caregiver:
Well, only family. Only my family, my daughters. (Slovak
Republic)
However, some caregivers from the same country, where paid
care services are not widespread, reported however that they still
appreciated advice from the formal sector. This advice varied and
included hints from professionals on how to care for a person
with incontinence, which practical strategies to use in order to
contain urine and faeces, how to best change incontinence
products, and how to provide hygienic care to a bedridden
person:
Sometimes I meet with the physiotherapist who use to help my
mum. He asks me questions about her. You know . . . we talk . . . it
helps me . . . I ask him some questions sometimes. I ask for
advice.... (Slovak Republic)
In Sweden, public support systems are more widespread than in
other countries. Most caregivers involved in our study reported
that they received the most practical help from home help services,
via staff who came into their home several times a day (and even
night, in one case), thus allowing the caregiver to prepare food and
take care of their own needs. Expectations in this respect are
therefore very high, to the point that some caregivers referred in
critical terms to the fact that these services expect them to actively
request help in case of need, thus still leaving the overall
responsibility of care on the caregiver, instead of taking it on
their own shoulders:
The responsibility lies with me. This has possibly irritated me
sometimes. They say, you know, say if you need any help, ring if
there's something. But its not actually doing the things thats
difcult, rather its the responsibility. (Sweden)
In the Netherlands, the greatest assistance came from relatives
who provided emotional support, with formal caregivers primarily
involved in assisting in practical terms the informal cargivers:
My brother says: When you need me, I dont care if its in the
middle of the night, when you need me Ill get in the car. (the
Netherlands)
Summarising, it can be therefore stated that in Italy and in the
Slovak Republic the main help provider is the family, both from a
psychological and practical point of view, while in the Netherlands
and in Sweden the family provides mainly emotional support and
the formal care sector delivers services addressing the practical
needs.
3. Discussion
This study has two innovative aspects compared to previous
investigations in this area. First, most of the past research has not
employed a qualitative methodology to examine the caregivers
perspective and experiences in the context of caring for a loved one
suffering from incontinence. In our experience, the use of this
approach allowed us to deal with a sensitive subject such as this by
investigating its features, but at the same time respecting the
sensitivity and the intimacy of the interviewees. Second, the
qualitative methodology allowed us to capture the caregivers
perspectives and thus to describe the dynamics underlying the

99

relationship characterising caregiver/care receiver dyads dealing

with incontinence.
Among the crucial elements that were not highlighted in
previous work on incontinence management, we were able to
identify in detail the types and extent of activities carried out by
caregivers, as well as their ambivalent feelings towards both the
role they play and their relatives (Principi et al., 2010). Our results
underline that accepting incontinence is very important in order to
better handle the difculties arising from incontinence management, such as overcoming disgust of the bad smell. Other crucial
issues are the family caregivers need to learn new competencies in
caring for a older person with incontinence and the constant
search for balance between assistance and maintenance of the
autonomy of the cared-for person. The caregivers point of view
emerges from their own description of how they feel, thus letting
us reach a privileged insight and understanding of their arduous
condition: the pain for the relative, the fatigue, the psychological
burden, the various types of difculties they deal with daily.
Many similarities were found in the way European caregivers
handle incontinence and in the socio-economic and psychological
consequences of this management. They partly conrm ndings
from the literature, including the recognition that the use of high
quality incontinence products helps to reduce the physical burden
for caregivers (Lane et al., 2003). However, this study captured, in
addition, the nancial difculties faced by families in purchasing
better incontinence products (for instance in Italy), descriptions
that were more in-depth compared to previous studies (Cassells &
Watt, 2003; Langa et al., 2002).
Incontinence represents an extra burden for caregivers (Gotoh
et al., 2009), and this is particularly true in the case of very old and
disabled people with dementia. This is underlined once again by
our study, as caregivers have to frequently remind the older caredfor person to go to the toilet, and must often accompany and help
them in this respect. For this reason, and because of the constant
need for supervision, incontinence management becomes a very
time-consuming and stressful activity for caregivers.
Caregivers receive support rst from other family members
and, in a few cases, from public or privately paid services. Family
networks provide practical and emotional help to the main
caregiver, who is very often a woman. Caregivers themselves
suggested that more practical support would allow them to have a
break from caring and offer badly needed moments of respite.
Moreover, they reported their wish and need to attend training
courses to learn how to better manage the care of their older
relatives and handle their leakages, rather than simply reading a
guide, which was appreciated by some respondents, possibly those
with a higher educational level (Paterson et al., 2003).
The deep emotional experience reported by the interviewed
caregivers conrms that the loss of continence can go far beyond
physiological impairment and impeach a persons social competence (Mitteness & Barker, 1995). Despite the longstanding
evidence in this respect (Garcia, Crocker, & Wyman, 2005;
Elenskaia et al., 2011), incontinence seems to remain a taboo
and a high stigmatising condition today, not only for those who
suffer in person from it, but also for their caregivers. The idea,
shared by many respondents, that incontinence is an unavoidable
age-related symptom, together with the sense of shame and
embarrassment experienced by them (Lobchuk & Rosenberg,
2014), contribute to explaining why so many incontinent persons
and their caregivers still refrain from help- seeking at an early stage
and thus preventing a further deterioration of the situation
(Mutema, 2009).
Our study ndings have several clinical, policy, and research
related implications. First, hospitals and other care institutions
should systematically plan training courses and services to
accompany caregivers of older people when the latter are

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S. Santini et al. / Archives of Gerontology and Geriatrics 63 (2016) 92101

discharged from hospital wards, in order to assess the type and

frequency of leakages, help caregivers to manage them, choose the
right absorbent products and avoid bedsores. This applies in
particular to the Italian and Slovakian context, two countries
where the problem is more often than elsewhere left only in the
hands of families.
Findings also suggest that launching an awareness campaign
addressing the older population at risk of incontinence could be
helpful in preparing potential suffers of incontinence and their
caregivers on how to best manage and eventually accept the
consequences of the condition. The need for more widespread
rehabilitation programmes is also recognised by the study. Urology
wards, in particular, should provide pelvic and perineal rehabilitation services to a wider number of people who are at risk of
incontinence than is the case today.
Policy makers, on turn, should become more aware of the
opportunities to relieve the burden of so many caregivers of
patients dealing with any illness in combination with incontinence. They should look into more effective solutions at regional
and local levels to grant respite as well as other support systems for
the family networks of older patients with incontinence.
Finally, it would be useful to engage in a more in-depth analysis
of some under-investigated aspects of incontinence care, such as
the relationship between incontinence and dementia, as well as
the economic costs related to incontinence management at both
micro (families) and macro (welfare system) levels.
Acknowledgements
The study on which this article is based was nanced by SCA
Hygiene Products (www.sca.com) and commissioned to EUROCARERS, which conducted it through four of its associated research
centres. The points of view expressed in this work are those of the
authors and not necessarily those of SCA Hygiene Products, as it did
not play any role in designing the study nor collecting, analysing or
interpreting data.
Appendix A. Supplementary data
Supplementary data associated with this article can be
found, in the online version, at http://dx.doi.org/10.1016/j.
archger.2015.10.013.
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