is paper identies the needs of caregivers, i.e. those who provide help to senior members of their
families who are dependent and cannot perform the activities of daily living. Results are based on an
explorative study that was conducted in 2017. e research used in-depth interviewing with 62 main
caregivers. Altogether 76 dierent needs were identied and these needs were subsequently clustered
into nine categories and described in detail. e identied needs may serve as asource of criteria for
evaluating prospective interventions aimed at caregivers.
Satisfying the needs of caregivers who provide care to dependent senior members of their families
is important from the perspective of quality, extent (scope) and adequate targeting of the care. ere
are many studies that focused on the needs of seniors (Detmar et al. 2001; Strawbridge et al. 1997;
Ingleton et al. 2003; Proot et al. 2004 or Sieget 1991). Within this strand of research there are sim-
ilar studies from Czechia that took local determinants and characteristics into account (e.g. Sýkoro-
vá 2005; Jeřábek 2009; Kuchařová 2002, Rabušic aVohralíková 2004; Veselá 2002). Although satisfy-
ing the needs of seniors who are recipients of the care is the primary focus of many interventions in
this eld, it is equally important to pay attention to the needs of those who provide the care, i.e. care-
givers. It can be argued that meeting caregivers’ needs is anecessary precondition for satisfying the
needs of dependent seniors. It is also important for caregivers’ quality of life, their health, capacities
to provide care and for the sustainability of their performance during the whole course of the care.
Overlooked needs of those who provide care might increase the burden associated with the care, de-
crease caregivers’ performance, and result in lower overall quality of the care. erefore, nding the
ways to meet caregivers’ needs is important not only for caregivers themselves but for seniors as well.
Knowledge about caregivers’ needs is not only important at the micro level where
it impacts the individual caregivers and care recipients. It has agreat value even at
the macro level as well because such knowledge enables relevant and adequate in-
terventions to be prepared and makes them evaluable. It is barely possible to evalu-
ate the relevance and usefulness of such interventions without detailed knowledge
about caregivers’ needs. As amaer of fact, interventions should not even be pro-
posed without such knowledge.
e importance of the caregivers’ needs is reﬂected by an increasing number of
studies. However, in spite of the accelerated interest of researchers in the topic, care-
givers’ needs are still not described in detail comparable with the needs of dependent
seniors. Some of the previous studies focused on caregivers’ burden and searched
for the relevant factors determining such burden (Aranda 1997; Connell and Gibson
1997; Mastrian et al. 1996). Other researchers paid aention to barriers and issues
1 „is work was supported by aproject of the Czech Science Foundation No.16-07931S
Needs Assessment of Family Caregivers of Elderly“.
associated with caregiving (Gallagher et al. 1989; Shaw et al. 1997; Schulz and Beach
1999) and further studies focused on preferences and wishes of caregivers (Levine
1999; Martire et al. 1997; Ory et al. 1999). Asubstantial part of researches turned their
aention to caregivers who look aer seniors requiring medical treatment; in this
respect, aention is paid especially to elderly oncological patients that are staying
within the family environment (Shin et al. 2010, Given et al. 2001, Bart 2006 or Cho et
al. 2006). Aention is further paid to the needs of seniors with Alzheimer disease and
their caregivers (Hall 1987, Mielman 2004, Parren et al. 2006 or ompson 2006).
However, there is alack of knowledge about other types of caregivers and their needs.
e objective of this paper is to provide asystematic review of empirically identi-
ﬁed needs of caregivers who provide informal family care to dependent senior mem-
bers of their families. Based on an explorative study, atypology based on the merit of
those needs is presented. For each type of needs, typical approaches for their satis-
faction taken by caregivers are described. Such analysis shows the most urgent areas
that caregivers cannot solve on their own or with the help of other family members
and call for interventions.
J. McKillip deﬁnes needs as the diﬀerence between “what is” and “what should be”
(McKillip, 1987). is approach was further elaborated by Witkin and Altschud (1995)
who deﬁned needs as the diﬀerence between the current and optimal state. However,
apart from this rather normative concept there are some other approaches to deﬁn-
ing needs. For instance, Davis deﬁned need within health care as asubjective feeling
initiating the decision-making process concerning the use of resources in order to
satisfy the need (Davies 1955). Similarly, Baldwin (1998) considered needs as an at-
tempt to compensate for the dis-equilibrium.
Gupta (2007), Witkin and Altschud (1995) or e.g. Soriano (1995) pointed-out the
merit of needs that diﬀer from preferences, wishes or wants. Similarly, Bradshaw
(1994) considered wants and wishes as aspecial category. e fact is that in some real-
world situations, needs and wants might merge together, however, from conceptual
point of view, it is essential to consider the two constructs separate. e reason why
it is important to conceptually diﬀerentiate needs from wants, even in the ﬁeld of
caregiving, is that many caregivers cannot identify their needs because they are not
aware of what they are lacking. On the other hand, identifying their preferences or
wants is easier because they are conscious and are reﬂected by caregivers. McKil-
lip in this respect emphasized that individuals do not know what they might need
From the perspective of social interventions ﬁnanced from public budgets, it is
essential to design and implement only such interventions that have the capacity to
satisfy the needs of the given target group. e reason is that only such interventions
might help to relieve the given issue. us, the needs serve as asource of key indica-
tors informing (either ex-ante, or ex-post) about the relevance of the given interven-
tions (Berk, Rossi 1999). e intervention is considered relevant once its goals satisfy
the previously identiﬁed needs.
— e signi cance of the needs
As scheme 1 shows, the needs can also help to evaluate the usefulness of intervention
by comparing the achieved results (typically outcomes) with the needs (Donaldson
et al. 2009). e intervention is considered useful when its outcomes meet the needs
of the target group (or other relevant stakeholders). Pu ing the needs and wants into
one basket might have distracted the focus of such intervention (or its evaluation)
and provide biased feedback.
From another perspective, one can distinguish diﬀ erent types of needs. In this
respect, Altschud and Witkin (2000) discriminate outcome needs from treatment
needs. e merit of outcome needs is represented by the gap between the current
and optimal state. On the other hand, treatment needs refer to the ways in which the
needs may be met. erefore, treatment needs are associated rather with the mea-
sures or process of satisfying the needs, whereas outcome needs reﬂ ect their merit.
In spite of this diﬀ erence between the two, it is important that treatment needs are
congruent with outcome needs. For instance, as an outcome need, the awareness
of manipulation techniques with seniors might be identiﬁ ed; a ending specialized
training course would then be the corresponding treatment need. In practice, there
are situations when only treatment needs are identiﬁ ed but the evidence of acor-
responding outcome need is missing. In the above mentioned example, there would
be aneed to perform the training course, however, the low awareness of caregivers
about manipulation techniques with seniors would not be proven. Such intervention
then might be evaluated as self-serving.
Many researches (Reviere et al. 1996; James 1999 or Crown 1991) point out that
there are many routes and methodological options how the needs might be identiﬁ ed
and assessed. ese approaches include epidemiological studies, comparative tasks
and verbal reports (i.e. declared needs). e presented study identiﬁ ed caregivers’
needs with acomparison of the individual self-reported descriptions of the daily rou-
tines associated with the care, practices and relevant circumstances. An explorative
type of study was performed in order to gain information on “what is”. Each respon-
dent was therefore asked to describe the usually performed activities concerning the
care, its reﬂ ection and dynamics. Interviewers were also instructed not to ask what
respondents would prefer or want with relation to the care. erefore, there were
neither questions on what the caregivers prefer, nor the identiﬁ cation of their wants.
Instead, adetailed description of the given practice was asked because only such in-
formation might be used as asource of information about needs, i.e. about the gap
between the real situation and an optimum. Such atactic of in-depth interviewing
corresponds with methodology of identifying needs.
Subsequent analysis of the narrative descriptions focused on identifying the in-
dividual activities and comparing such practices of the given case with the ways how
other respondents perform the same tasks. Taking this approach, the optimal state,
i.e. “what should be”, was deﬁned and thus the identiﬁcation of the needs was en-
abled. Furthermore, aention was focused on comparing the approaches to solving
agiven part of the care with the aim to identify treatment needs and distinguishing
them from outcomes needs.
In-depth interviews were conducted with the main caregivers in given households
during the year 2017. Aqualitative approach prompted the exploratory aempt of the
research objective and enabled the respondents to elaborate on their experiences.
During the interviews, it become obvious that many caregivers considered the topic
sensitive and therefore they appreciated the set research design where they could
talk with interviewers alone without other persons following the discussion.
Altogether 62 interviews were conducted. e so-called ‘main caregiver’ was
identiﬁed within the families where the tasks associated with the care were divided
among diﬀerent family members who participated in providing the care. e identi-
ﬁcation of such aperson was based on asimple question focused on listing all family
members engaged in providing the care, followed by an estimation of the burden
that the listed persons bear. Contact persons then reported an average time allocated
for the care by each caregiver and frequency of visits to the senior to provide care.
e person who bared the major burden (or provided care for the longest time or
the most frequently) was considered as the main caregiver. If such an individual
was the contact person, the interview continued. If not, then the contact person was
asked to mediate contact with the main caregiver and consequently the interview
was performed with this person. e sample is diﬀerentiated by region (4 caregivers
come from Prague, 50 are from Bohemia, whereas the remaining 8 caregivers come
from Moravia), size of selement (7 interviews are from selements with more than
100.000 inhabitants whereas 55 interviews are from smaller selements) and gender
(49 caregivers are females and 13 are males).
As was already mentioned above, the in-depth interviews focused on conditions
under which the informal care was provided, on circumstances that determined the
nature and character of the care, on motivation for providing the care and on the
impact that the care had on the lives of caregivers. Respondents were also asked to
identify the key barriers and obstacles they had to face during the course of caring.
ey were also asked to provide their reﬂection of the care and the way in which care
Asubstantial part of interviews was focused on the care as such; what actual tasks
were performed by the main caregivers themselves, what tasks were performed by
other caregivers, duration of the care, etc. Speciﬁc questions were asked about the
bonds that caregiver had with the senior, the household (type of dwelling, number of
persons within the households) and the social services used on demand or regularly
(food supply, cleaning, washing, personal care, etc.). e interviews were focused on
describing the stages of the care, i.e. how exactly the care started, what were the ma-
jor discontinuities during the caring process, how long the care lasted, etc. Special
aention was paid to the interaction of informal home care with professional social
services and residential or, as the case may be, institutional care.
All interviews were tape-recorded and transcribed. Content analysis was then
used to gain important knowledge from all transcriptions. e analysis was focused
primarily on the identiﬁcation of the needs. e research design enabled the needs to
be identiﬁed even for those families that did not ask for any help, and which did not
explicitly articulate any preferences or wishes associated with the care.
e number of interviews (62) can be considered suﬃcient. Due to the qualitative
nature of the explorative studies, there is no need to anticipate the representative-
ness of the sample. Research ﬁndings are of aqualitative nature, i.e. they inform
about needs but do not provide data on the population which would have been the
aim of aquantitative research. Due to the fact that some of the needs appeared re-
peatedly, it is possible to conclude that the issue was thematically covered (Dinero
e following part of the paper starts with general overview of the caregivers’ needs
that were identiﬁed by the conducted study. en, detailed aention is paid to indi-
vidual clusters of needs. In this respect some clusters (speciﬁcally the clusters involv-
ing psychological, emotional, social and health needs) are described jointly because
of similarities in the way each caregiver identiﬁes the typical paerns for satisfying
Altogether 76 diﬀerent needs were identiﬁed within the conducted interviews. In ac-
cordance with objectives of this study, the needs were identiﬁed only with respect to
caregivers, i.e. the needs of other stakeholders such as seniors or social workers were
not included on the list. For all identiﬁed needs, the substantial gaps between current
practice and the optimal situation were identiﬁed. Some of these gaps are obvious
from cited excerpts from the interviews. Caregivers’ needs were then grouped into
nine major clusters based on the thematic similarities. e list of all needs and their
aﬃliation with the clusters is presented in Table 1.
Needs cluster Needs
. information about determinants of seniors’ health status
. information about seniors’ disease
. information about possible treatments including alternative
and complementary methods
. information about available drugs
. information about caring methods
. information on how to exercise with seniors
. information about diet
. information about social service providers (contact details, how they
operate, benchmarking, prices)
. information about available nancial support (care-allowance and
. information about eligibility criteria
. recommendation of how to choose adequate tools
. honest explanation from doctors concerning prospective development
of seniors’ health
Practical needs . taking care of dogs, cats and other pets
. recruiting competent help
. prompting relief of seniors’ discomfort and pain
. learning specic tasks (e.g. bathing, feeding and cleaning
. transporting the senior (e.g. to/from the hospital, to the visits, etc.).
. help with housekeeping
. stimulation activities, senior activation
. daily shopping
. consulting my decisions concerning the care
. quick and easy access to medical help or consultation (hotline)
. involvement in the decision-making process concerning
. rapid (emergency) help
. operating special tools, machines, appliances
. dedicated space for the senior at home
. retting/renovating the house/at
. eliminating barriers
. moving within the at/house
. purchasing new equipment into the household (decubitus bed,
special chairs, etc.)
. purchasing anew/dierent car (capable of transporting
. rearranging the at/house
. house/at repairs; maintenance of the garden
. minimising the administrative burden
. help with legal issues
. help with administrative issues related to the care
. help with other administrative issues
Needs cluster Needs
. health problems (depression, sadness)
. health problems (nervousness, irritability, anger,
. low self-condence, self-esteem
. undermining caregivers’ competencies and skills
. coping strategies
. underestimating the negative impacts of care on the caregivers’
. addressing end-of-life issues
. inadequate perception of own limits
. fears of the senior
. exit strategy (what to do aer care giving)
. loneliness, perceived isolation
. lack of appreciation from the senior
. lack of appreciation from doctors and nurses
. spiritual help
. empathy from the nurse
. sharing the pain
Social needs . loss of friends, absence of social interactions
. focus on the care accompanied with elimination of other interests
. detrimental family relationships
. other interpersonal relationships issues
. communicating with professionals (especially with medical
. communicating with other family members
. sharing experiences with other caregivers
. how to restart when caregiving is over
. caregivers’ activation
. reestablishment of social contacts
. division of labour within the families
Health needs . health problems (infections and consequent separation from senior)
. health problems (urgent surgery)
. health problems (preventive visits— long queues; bad time-
management at the doctors)
. no time to relax
. nancial help compensation for direct expenses
. subsidies for indirect costs
. return to work
. performing their job (employment)
. paying for their old-age pension
. interruption of regular payments (e.g. mortgage, life-insurance)
. maintaining their job (as in the case of maternity leave)
. space for caregiver when the senior must stay in ahospital
Typology of identied needs
Educational needs were identiﬁed by the lack of basic information about important
aspects of caregiving and by incorrect answers to knowledge questions. e actual
presence of the need was validated by relevance and usefulness of such information
from the perspective of caregivers. Informational help to caregivers is driven by the
fact that most caregivers are not nurses or social workers, but they are laymen with-
out formal education in the ﬁeld of caregiving. e following excerpts from inter-
views document situational factors and practical circumstances of educational needs:
“Everything was suddenly so new for me. Idid not know anything about caring”
“My doctor did not tell me anything about that disease. So Ihad to ﬁnd all the infor-
mation on the Internet. But you know … Iam not amedical doctor, nor anurse … so
Ido not understand alot of things” (CG_15_1).
“For me the most diﬃcult part was the decision-making. What should Ido when he
has heavy breathing? Should Icall an ambulance? Should Iask somebody for help?”
“If Iknew in those days that Icould have somebody who could help me with feeding
and bathing, Iwould have deﬁnitely used such help. But Ihad no time to search for
such information” (CG_19_1).
Once the care is provided, the usefulness of educational campaigns is low. Such cam-
paigns should target the group of potential providers of care; however, caregivers do
not have time for searching and retrieving general information. Moreover, educat-
ing caregivers might be along-lasting activity with an uncertain eﬀect. erefore,
systematic education might be useful for those who are ‘in-between’ providing care,
e.g. they ﬁnished caring for one senior member of the family and expect to provide
care to another(s).
Practical needs require not only knowledge but also speciﬁc skills; practical needs
go far beyond only knowledge. In this respect desired, informal home-care (family
care) would be supported by easily available and aﬀordable social services. Especially
in rural areas, the needs of caregivers are not satisﬁed due to the low availability
of these services. In many cases, social services are not used by caregivers because
aconﬂict of interests between social service providers and their clients (caregivers)
occurs. e fact is that social services are oen provided on acontractual basis in-
tended for regular and long-term use. However, such arequirement does not cor-
respond with caregivers’ needs that come occasionally and have an ad-hoc nature.
“Our general practitioner never visited my father at home. Never” (CG_12_1).
“e others in my family are afraid of providing the care. ey do not know how to do
it, they do not want to hurt him and so …” (CG_12_2). e other family members were
too scared of the care” (CG_17_2).
“One social worker that Iinvited showed me how to manipulate with the body, how to
wash her, how to change her clothes and so on. at was extremely useful”(CG_14_2).
“My father, he was quite big and heavy. So it was extremely diﬃcult to even turn him
on the bed” (CG_16_2).
e need to develop caregivers’ practical skills is driven by their low awareness about
the standards of the care. Extensive and comprehensive training of caregivers would
not only supply speciﬁc information but it would also help to improve the quality of
Satisfying these needs would be useful through co-work when the caregivers
would perform acertain operation together (or under the supervision) of askilled,
professional social worker. Shared care (i.e. the joint eﬀort of the family caregivers
and social service professionals), co-work or mobile hospices may yield promising re-
sults. Satisfying such needs should take the form of doing certain operations together
with askilled social worker. Co-work is useful for those in the early stage of providing
care. Otherwise, caregivers use the method of trial and error, which may be at the
expense of quality of the care and comfort of the senior. e aim is to teach how to
do the things right, especially to prevent injuries, to enable visits to the doctors, and
to oﬀer shared rooms in the hospitals (what to do with the senior if caregiver must
stay in the hospital).
Psychological and emotional needs are strongly associated with the diﬀerent phases
of the caregiving process. During its initial stages, it is the need to deal with the (of-
ten sudden) onset of the care, whereas during the routine caregiving (when the role
of the caregiver is already established), it is especially the strategies of dealing with
the burden and preventing burnout.
“If Icould have used the psychological help, Iwould deﬁnitely have done it. e thing
is that during the care, the relationship with my youngest daughter greatly dete-
riorated. Iwas so deeply involved in caring for my mother that the raising my child,
Itotally screwed it up” (CG_11_2).
“What Imissed was the psychological support. To hear from somebody that you are
doing things right, that you are on the right track, you know …” (CG_17_1).
Social needs comprise especially communication skills of caregivers with profession-
als (such as medical doctors, nurses, social workers, etc.). It also covers communica-
tion skills when negotiating about the division of labour within the family (among
family members; engaging other care providers; delegating some of the duties asso-
ciated with caregiving to others). Social needs also involve gaps that come from the
fact that caregivers usually interrupt their social contacts (colleagues from work, ac-
quaintances, other relatives, etc.) because they are so deeply involved in caregiving
that they do not have time for such social activities. Social needs were indicated by
the declared loss of (or at least substantial reduction of ) social contacts and by the
amount of time devoted to caregiving.
“During the caregiving Iwas not able to invite any visitors into my home. No friends,
colleagues from my previous work, nobody was allowed to enter the house where
Iprovided care to my mother” (CG11_1).
“e care totally eroded our lives. My family broke-up, Isuﬀered the divorce,
and my sister experienced the same trouble. So for now, both of us remain alone”
Apart from the above presented outcome needs, from the narratives provided by in-
dividual caregivers, there are also typical methods how their needs were solved and/
or what the caregivers did within the situation which they are in. e strategies are
a) Denial of the needs or postponing their satisfaction,
b) Rationalization (i.e. problem solving),
c) Seeking professional (remedial) help.
Psychological, emotional and social needs may be met by specialized and professional
counselling. e help of experienced and specialized coaches can yield satisfactory
results. Here the individual aention of the skilled professional to the caregiver is
essential. ese needs are very oen unmet; see the coping strategies. ese needs
cannot be outsourced because they must be provided personally (as alabour of love).
Many caregivers are exhausted (physically and mentally) from providing awhole
range of operations and activities that they perform rather intuitively.
Health needs are based on issues associated with the health of the caregivers. It is
important to point out in this case that caregivers are themselves of an older age—
many of them are older than 50. erefore, health concerns are not rare in this popu-
“When my husband was still alive, Iwas OK. However, when he died, my blood-
pressure went-up sharply just for no reason. And then Ihad to go to ahospital…”
“Aer my father died, Icollapsed and now Iam on sick leave for almost ayear”
“When she fell down, Icould not li her up. Well, Idid ﬁnally, but it was at the ex-
pense of my health” (CG_19_2).
e goal is to prevent injuries caused by the care, to enable visits at the doctors (re-
spite), to provide shared rooms in the hospital when it is necessary that the caregiv-
ers stay at the hospital.
ese type of needs represent the payments of the costs and expenses associated with
the care. ese needs are related with educational needs and some others. Financial
needs are further determined by the impacts that caregiving has on the status of the
caregiver on the labour market, especially in the case of leaving the labour market
because of the care and adecreased old-age pension (as aconsequence of leaving the
labour market earlier).
“Iused to be ahard-worker. Ispent 12 or even 14 hours per day in my work and the
boss was very satisﬁed with me. However, when Istarted to provide care, it was not
possible any more … so Ilost the job. And now, aer the care is over, Icannot get anew
job— there is no job vacancy for me” (CG_11_5).
“Having your mother at home, you are punished by the system. You have to purchase
everything with your own money. If my mother would be in ahospital, she would get
all the drugs, bandages, infusions, etc. for free. However, having her at home, we had
to purchase all that stuﬀ” (CG_14_2).
“Iwish Icould have built anew shower enclosure but it was not aﬀordable for me”
Ahigh share of caregivers is over 50 years old. It is acritical stage in life concerning
their position in the labour market. It is obvious that the fear of job loss and conse-
quent decrease in the standard of living (oen permanent) is one of the key stress-
ors among caregivers. Fear from losing ajob may in some cases lead to the decision to
resign from providing care and to moving the senior to aresidential institution. is
involves comprises the families where the main caregiver is at the same time the head
of the household and has dependent children, pays the mortgage, or is in pre-retire-
ment age with no good outlook to return to the labour market. e harmonization of
work and family (caregiving) lives is therefore essential. For instance, part-time jobs,
shared work-positions or ﬂexible time schedules may be helpful in this respect. One
possible instrument is asecured job position, i.e. the obligation of the employer to
maintain the working place of the caregiver during the course of the care. Another
measure is the possibility to retire without decreasing one’s old-age beneﬁt/pension.
Moreover, there is also aneed to compensate the direct costs associated with the care,
i.e. the purchase of tools, equipment etc.
e last type of needs cover the redesign of aﬂat or house, especially barrier-free ac-
cess, the installation of special handgrips, etc. ese needs also represent the need to
move house (when either the senior or caregiver moves in with the other).
“We have rebuilt the whole bathroom, installed anew shower enclosure and bidet,
purchased the special seats, put the handgrips everywhere” (CG_11_4).
Aspeciﬁc type of technical needs represent the need to eliminate or at least to de-
crease the administrative burden.
“It was anever-ending story of sending new and newer pieces of evidence that my
mother really is totally dependent. en Ihad to undergo all day long wrangling for
care allowance, repeated visits of local authorities, ﬁlling-in the same information
several times into the forms and applications. And then? en you have to wait for
several months to start receiving the allowance that doesn’t cover the expenses any-
“Ok, you need the wheelchair. So, you apply for it, ﬁll-in some papers and do this kind
of stuﬀ. And then you wait for one or two months. It was too long” (CG_13_1).
e importance of the above presented typology of the caregivers’ needs is at least
twofold. It may help to design interventions because aspeciﬁc stand-alone interven-
tion for each need would not be eﬀective. Such awide portfolio of interventions could
be confusing for prospective clients. However, for reasonably built clusters of needs,
relevant and eﬀective interventions may be proposed. e typology of needs thus en-
ables us to abstract from situational context and may serve as aguide for given inter-
ventions or measures.
e clusters enable the satisfaction of the given needs to be maximised. e iden-
tiﬁcation of similarities and designation of their diﬀerences enables us to focus such
interventions on the merit of such needs. e needs assessment and their typology
then provide the opportunity for beer targeting of such needs and help to optimize
the satisfaction of caregivers.
e impacts of unmet needs are especially in the a) extensive burden of the care,
b) decreased quality of care, c) lower aractiveness of family care (putative burden)
and d) malfunction of current interventions and policies (high non-take-up).
Further research may try to quantify the needs either in terms of their preva-
lence (i.e. by the means of representative cross-sectional research) or in terms of the
amount of such needs. Another study may focus on proving the acceptability of the
identiﬁed measures either through acase study approach (e.g. the ﬁeld experiment),
or by declared measures (for instance by the willingness to pay).
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