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This paper identifies 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. The research used in-depth interviewing with 62 main caregivers. Altogether 76 different needs were identified and these needs were subsequently clustered into nine categories and described in detail. The identified needs may serve as a source of criteria for evaluating prospective interventions aimed at caregivers.
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is paper identies 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 dierent needs were identied and these needs were subsequently clustered
into nine categories and described in detail. e identied needs may serve as asource 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 aVohralíková 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 anecessary 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 agreat 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 amaer 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 aention to barriers and issues
1 „is work was supported by aproject 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). Asubstantial part of researches turned their
aention to caregivers who look aer seniors requiring medical treatment; in this
respect, aention 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). Aention is further paid to the needs of seniors with Alzheimer disease and
their caregivers (Hall 1987, Mielman 2004, Parren et al. 2006 or ompson 2006).
However, there is alack of knowledge about other types of caregivers and their needs.
e objective of this paper is to provide asystematic 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, atypology 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 asubjective 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 aspecial 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
(McKillip 1987).
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 asource 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 acor-
responding outcome need is missing. In the above mentioned example, there would
be aneed 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 acomparison 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, adetailed description of the given practice was asked because only such in-
formation might be used as asource of information about needs, i.e. about the gap
between the real situation and an optimum. Such atactic 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, aention was focused on comparing the approaches to solving
agiven 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. Aqualitative approach prompted the exploratory aempt 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 aperson was based on asimple 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 selement (7 interviews are from selements with more than
100.000 inhabitants whereas 55 interviews are from smaller selements) 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
was provided.
Asubstantial 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
aention 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 aqualitative nature, i.e. they inform
about needs but do not provide data on the population which would have been the
aim of aquantitative 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 aention 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 paerns for satisfying
those needs.
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
other benets)
. 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 specic tasks (e.g. bathing, feeding and cleaning
the senior)
. 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
the treatment
. rapid (emergency) help
. operating special tools, machines, appliances
. dedicated space for the senior at home
. retting/renovating the house/at
. eliminating barriers
. moving within the at/house
. purchasing new equipment into the household (decubitus bed,
special chairs, etc.)
. purchasing anew/dierent 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,
stress management)
. low self-condence, 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 aer 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 ahospital
 Typology of identied 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. Idid not know anything about caring”
“My doctor did not tell me anything about that disease. So Ihad to find all the infor-
mation on the Internet. But you know … Iam not amedical doctor, nor anurse … so
Ido not understand alot of things” (CG_15_1).
“For me the most difficult part was the decision-making. What should Ido when he
has heavy breathing? Should Icall an ambulance? Should Iask somebody for help?”
“If Iknew in those days that Icould have somebody who could help me with feeding
and bathing, Iwould have definitely used such help. But Ihad 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 along-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
aconflict of interests between social service providers and their clients (caregivers)
occurs. e fact is that social services are oen provided on acontractual basis in-
tended for regular and long-term use. However, such arequirement 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 Iinvited 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
informal care.
Satisfying these needs would be useful through co-work when the caregivers
would perform acertain operation together (or under the supervision) of askilled,
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 askilled 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 Icould have used the psychological help, Iwould definitely have done it. e thing
is that during the care, the relationship with my youngest daughter greatly dete-
riorated. Iwas so deeply involved in caring for my mother that the raising my child,
Itotally screwed it up” (CG_11_2).
“What Imissed 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 Iwas not able to invite any visitors into my home. No friends,
colleagues from my previous work, nobody was allowed to enter the house where
Iprovided care to my mother” (CG11_1).
“e care totally eroded our lives. My family broke-up, Isuffered 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
as follows:
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 aention of the skilled professional to the caregiver is
essential. ese needs are very oen unmet; see the coping strategies. ese needs
cannot be outsourced because they must be provided personally (as alabour of love).
Many caregivers are exhausted (physically and mentally) from providing awhole
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-
lation segment.
“When my husband was still alive, Iwas OK. However, when he died, my blood-
pressure went-up sharply just for no reason. And then Ihad to go to ahospital…”
Aer my father died, Icollapsed and now Iam on sick leave for almost ayear”
“When she fell down, Icould not li her up. Well, Idid 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 adecreased old-age pension (as aconsequence of leaving the
labour market earlier).
“Iused to be ahard-worker. Ispent 12 or even 14 hours per day in my work and the
boss was very satisfied with me. However, when Istarted to provide care, it was not
possible any more … so Ilost the job. And now, aer the care is over, Icannot get anew
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 ahospital, 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).
“Iwish Icould have built anew shower enclosure but it was not affordable for me
Ahigh share of caregivers is over 50 years old. It is acritical 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 (oen permanent) is one of the key stress-
ors among caregivers. Fear from losing ajob may in some cases lead to the decision to
resign from providing care and to moving the senior to aresidential 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 asecured 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 aneed 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 aflat 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 anew shower enclosure and bidet,
purchased the special seats, put the handgrips everywhere” (CG_11_4).
Aspecific type of technical needs represent the need to eliminate or at least to de-
crease the administrative burden.
“It was anever-ending story of sending new and newer pieces of evidence that my
mother really is totally dependent. en Ihad 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-
way” (CG_11_3).
“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 aspecific stand-alone interven-
tion for each need would not be effective. Such awide 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 aguide 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 beer 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 aractiveness 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 acase study approach (e.g. the field experiment),
or by declared measures (for instance by the willingness to pay).
ALTSCHULD, J.W., WITKIN, B.R. 2000. From
Needs Assessment to Action. London: SAGE
WHITLATCH, C.J. 1995. Proles in Caregiving.
e Unexpected Career. California: Academic
ARANDA, M.P.1997. e inuence of ethnicity
and culture on the caregiver stress and
coping process: asociocultural review and
analysis. Gerontologist, 37, 342–354.
BALDWIN, S.1998. Needs assessment and
community care: clinical practice and policy
making. Oxford: Butterworth-Heinemann.
BERK, R.A., ROSSI, P.H. 1999. inking
About Program Evaluation 2. London: SAGE
BRADSHAW, J. 1994. e contextualisation
and measurement of need: asocial policy
perspective, in POPAY, J., WILLIAMS, G.
(eds.) Researching the People’s Health. London:
CONNELL, C.M., GIBSON, G.D. 1997. Racial,
ethnic, and cultural dierences in dementia
caregiving: review and analysis. Gerontologist,
37, 355–364.
CROWN, J. 1991. Needs assessment. British
Journal of Hospital Medicine, 46, 307–308.
DAVIS, M.M. 1955. Medical care for tomorrow.
New York: Harper.
AARONSON, N.K. 2001. Patient-physician
communication during outpatient palliative
treatment visits: an observational study.
JAMA, 285(10), 1351−1357.
DINERO, T.E. 1999. Selected Practical Problems
in Health and Social Research. London: e
Haworth Press.
MARK, M.M. (eds.). 2009. What Counts
as Credible Evidence in Applied Research and
Evaluation Practice? London: SAGE
(1989). Prevalence of depression in family
caregivers. Gerontologist, 29, 449–456.
GUPTA, K. 2007. APractical Guide to Needs
Assessment. San Francisco: Pfeier.
CAREY, I. 2003. Respite in palliative care:
areview and discussion of the literature.
Palliative Medicine, 17(7), 567−575.
JAMES, M. 1999. Towards an integrated needs
and outcome framework. Health Policy, 46,
JEŘÁBEK, H. 2009. Rodinná péče oseniory
jako „práce zlásky“: nové argumenty.
Sociologický časopis, 45(2), 243−265.
KUCHAŘOVÁ, V. 2002. Život ve stáří. Praha:
LEVINE, C.1999. e loneliness of the long-
term caregiver. New England Journal of
Medicine, 340, 1587–1590.
ATIENZA, A.A. 1997. e interplay of work
and caregiving: relationships between role
satisfaction, role involvement, and caregivers’
wellbeing. e Journals of Gerontology Series B:
Psychological Sciences and Social Sciences, 52,
G.T. 1996. Predictors of caregiver health
strain. Home Health Nurse, 14, 209–217.
MCKILLIP, J. 1987. Need Analysis. Tools for the
Human Services and Education. London:
SAGE Publishing
Prevalence and impact of caregiving:
adetailed comparison between dementia and
nondementia caregivers. Gerontologist, 39,
WIDDERSHOVEN, G. 2004. e needs of
terminally ill patients at home: directing
one’s life, health and things related to beloved
others. Palliative Medicine, 18(1), 53−61.
C.C., FERGUSON, C.G. 1996. Needs
Assessment: ACreative and Practical Guide
for Social Scientists. Washington:
Čeští senioři včera, dnes azítra. Brno:
SCHULZ, R., BEACH, S.R. 1999. Caregiving
as arisk factor for mortality: the Caregiver
Health Eects Study. JAMA, 282 (23),
S.J. et al. 1997. Longitudinal analysis of
multiple indicators of health decline among
spouse caregivers. Annals of Behavioral
Medicine, 19, 101–109.
MOR, V. 1991. Caregiver burden and unmet
patient needs. Cancer, 68, 1131−1140.
SORIANO, F.I. 1995. Conducting Needs
Assessments. AMultidisciplinary Approach.
London: SAGE Publishing.
SHEMA, S.J. & KAPLAN, G.A. 1997. New
burdens or more of the same? Comparing
grandparent, spouse and adult-child
caregivers. Gerontologist, 37, 505–510.
SÝKOROVÁ, D. 2005. Osobní autonomie
seniorů vkontextu rodinných vztahů In
Třetí věk trojí optikou. Olomouc: Univerzita
Palackého vOlomouci.
VESELÁ, J. 2002. Představy rodinných
příslušníků ozabezpečení péče nesoběstačným
rodičům. Praha: VÚPSV.
Planning and Conducting Needs Assessments.
London: SAGE Publishing.
... However, it is out of the scope of this paper to focus on actual problems -for some of those that are concerned with caregivers (see e.g. Remr 2016or Remr 2018. Let´s also put aside how solutions are developed or decided upon, and get focused on how the different ways of needs satisfaction are evaluated, how to recognize what works, i.e. which interventions contribute to needs satisfaction and which do not. ...
... Apart from substantive variations among the needs, when e.g. Remr (2018) identified 78 needs of people who provide informal care to dependent seniors within their homes, the differences between needs on the one hand, and some other constructs on the other, should be reflected. Under the given circumstances, the needs might overlap with wants, preferences, or demand. ...
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This article focuses attention on the importance of needs that are understood as a criterium for the evaluation of usefulness. The text proposes a usable conceptual framing of what evidence might be collected. Moreover, it identifies the role of needs within the theory of change that is presented by the generalized logic model and finally it points out the key situation when usefulness can successfully supplement other evaluative criteria like relevance or effectiveness. Discrimination of needs from similar constructs like wants, preferences and demand is analyzed and documented with vivid examples from a study that focused on the needs of informal caregivers providing care to the dependent seniors within their homes. Moreover, the key methodological peculiarities of the systematic process of the identification, analysis and evaluation of needs are brought to attention.
Conference Paper
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Providing informal care to senior family members has positive effects on dependent seniors who can remain in their natural physical and social environment. However, informal care can also place increased stress on caregivers due to differences in the availability and affordability of social services and changes in the needs of dependent seniors over the life course. Informal caregivers become vulnerable due to limitations in their social lives, reduced quality of life, and limited access to resources. The paper seeks care pathways that would reduce these inequalities, enhance the quality of life of caregivers by meeting their needs, and ensure dignity in older age by improving the involvement of both seniors and caregivers. Based on empirical evidence in the form of data from a representative sample of informal caregivers in the Czechia, the paper proposes specific interventions for caregivers to eliminate, minimize, or at least offset the negative impacts of caregiving.
Technical Report
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Závěrečná evaluační zpráva informuje o průběhu řešení projektu, kdy byla průběžně sledována realizace projektových aktivit a tvorba výstupů. Závěry v této evaluační zprávě se opírají o projektovou dokumentaci, výstupy projektových aktivit, zápisy z projektových aktivit a o výsledky satisfakčního výzkumu. Projekt cílil na implementaci nového způsobu mapování potřeb a schopnosti sociálního fungování klientů (osob s PPP). V souvislosti s tím měl projekt zvýšit odborné kompetence sociálních pracovnic v oblasti evaluace a využívání nově vytvořeného systému zjišťování potřeba schopnosti sociálního fungování klientů.
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The aim of presentation is to propose advanced knowledge about an intervention performance and its effects on beneficiaries. Replicable and easy-to-follow solution in a form of recommended guidelines is offered. Discrimination of needs from other constructs (wants, preferences, and demand) is documented with examples from social services. Presentation focuses the attention on the importance of needs that are treated as a criterium for usefulness evaluation. The guidelines enable to focus the interventions on a merit of such needs.
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This paper is based on a survey among 435 Czech households caring for a dependent senior in the family to inquire into the conditions and circumstances of caring for seniors in the family. The concept of ‘care as a labour of love’ (Graham) is contrasted with the concept of the ‘defamilisation of care’ (Glenn) and ‘social rights for elderly care’ (Fine). The author finds that more demanding family care, measured as the level of IADL or BADL, is reflected in a growing number of hours spent on family care. The author shows the significant differences in the psychological and financial burden experienced by primary caregivers in relation to how demanding the level of care required is. The article presents evidence of the existence of ‘collective family care’ in situations where demanding personal care for a senior is required. The participation of other family members in providing care for a senior in situations of demanding personal care demonstrates some features of family cohesion.
There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality. To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline. Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up. Four US communities. A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses. Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or(4) spouse disabled and helping with mental or emotional strain reported. After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95 % CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls. Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.
This handbook is designed for anyone seeking a methodical approach to needs assessment, but it is intended primarily for human resource development (HRD) professionals and for those who must validate HRD programs. It lays the foundations for needs assessment, discusses the "whats" and "whys," and then reviews the "how tos." These chapters review the basics of needs assessment: (1) "Overview of Needs Assessment"; (2) "Fundamentals of Data Gathering"; (3) "Strategic Needs Assessment"; (4) "Competency-Based Assessment"; (5) "Job and Task Analysis"; and (6) "Training Needs Assessment." The third part of the book contains the needs-assessment toolkit, including a glossary, additional resources, and information about the accompanying toolkit forms on diskette. Twenty-one toolkit forms also are reproduced in the book. (Contains 33 figures and 30 references.) (SLD)
Four-hundred eighty-three patients with cancer and their informal caregivers were studied. Patients reported on met and unmet needs in personal care activities (bathing and dressing), instrumental activities (heavy and light housekeeping, cooking, shopping), transportation (medical and general), and home health care (health/treatment assistance). A minority (18.9%) experienced an unmet need. Hierarchical logistic regression was used to identify significant predictors of any unmet need. Patients were more likely to report any unmet needs when their illness/treatment resulted in restricted activity days, when their financial resources were reduced enough for them to apply for Medicaid or Public Assistance, or when their caregivers were not their spouses. Although in general, the likelihood of an unmet need decreased as the number of domains of assistance provided by the caregiver increased, if that care was associated with a high level of burden, the odds of a patient reporting an unmet need actually increased.