Applied Nursing Research 29 (2016) 242–247

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Applied Nursing Research

journal homepage: www.elsevier.com/locate/apnr

Original Article

Analysis of the transition process among family caregivers in a hospital in

the region of Catalonia in Spain
Gerard Mora-López a,⁎, Carme Ferré-Grau, phD, RN b,1, Pilar Montesó-Curto, phD, RN c,2
a
Joan XXIII University Hospital of Tarragona, Department of Nursing, Rovira i Virgili University, 13–15, Remolins Avenue, Tortosa, 43500, Tarragona, Spain
b
Department of Nursing, University Rovira i Virgili (Tarragona), 34 Catalunya Avenue, Tarragona, 43002, Tarragona, Spain
c
Department of Nursing, University Rovira i Virgili (Tarragona), 13–15, Remolins Avenue, Tortosa 43500, Tarragona, Spain

a r t i c l e i n f o a b s t r a c t

Article history: Purpose: The aim of this study is to explore and understand the experience of the adaptation process among fam-
Received 1 July 2014 ily caregivers in hospitals, who have an active presence in hospital and are essential in ensuring proper patient
Revised 5 June 2015 care.
Accepted 8 June 2015 Methods: A qualitative phenomenological approach was used to gain a deeper understanding of caregivers' lived
Available online xxxx
experiences. Data were collected using in-depth interviews to explore six caregivers' experiences of hospitaliza-
tion.
Keywords:
Caregiver
Results: The caregivers' accounts highlight the different determining factors in the transition process of a chron-
Chronic disease ically ill patient's family caregiver during the patient's time in hospital. The most important themes emerging
Hospital administration from the analysis were the importance of cultural beliefs and attitudes, meaning of the situation, caregiver's train-
Qualitative research ing and knowledge, socio-economic status and the hospital as a community. These categories can be analyzed
Nursing care using transitions theory.
Conclusions: The most important conclusion is that the hospital in this study was not designed to accommodate
caregivers, and the mechanisms used to meet caregivers' needs endanger their privacy, health, and coexistence in
the hospital's rooms. Transitions theory provides a holistic understanding of the experience of the family
caregiver.
© 2015 Elsevier Inc. All rights reserved.

1. Introduction Hospital admission is the gateway into a world of conventions and

The study was carried out in Catalonia (Spain), where the increase in
life expectancy at birth and the decline of the birth rate have led to an
ageing population and increased prevalence of chronic diseases. In this
region, most care required by dependent individuals is the responsibil-
ity of the main caregiver, who is usually a relative of the person receiv-
ing care, and whose profile is characterized by a lack of any specific
training for the tasks of caring, no financial remuneration for this
work, a high level of commitment towards the work, and their emotion-
al involvement and provision of care 24 hours a day, 365 days a year.
Care for the person who has a chronic disease is administered at
home. However, when the patient's situation changes, families often
ask their referral hospital to admit the patient. The patient is accompa-
nied by a main caregiver/family member, who spends 24 hours a day in
the hospital (Ferre-Grau, Rodero Sanchez, Vives Relats, & Cid Buera,
2008).
⁎ Corresponding author. Tel.: +34 646433434.
E-mail addresses: gerard.mora@urv.cat (G. Mora-López), carme.ferre@urv.cat
(C. Ferré-Grau), mariapilar.monteso@urv.cat (P. Montesó-Curto).
1
Tel.: +34 977 29 94 41.
2
Tel.: +34 977 464 030.
symbols, colors, uniforms, and linguistic codes that are often not under-
stood by patients or their caregivers. Both feel disoriented, as well as
experiencing a situation of dependence and inferiority. Hospitals in
Spain have never been designed to accommodate family caregivers. De-
spite the need for them when accompanying patients, they are a sec-
ondary concern and suffer from low levels of visibility.
This research study received the INVESTIF award from the Tarragona
Official College of Nursing, and the Cinca y Pique prize from Rovira i
Virgili University.
2. Literature review
In the literature review, we found many references to family care-
givers in the home environment, (Crespo López, 2007; Zarit & Bach-
Peterson, 1980) but very few referring to hospitals, although interest-
ingly, research in this field has increased considerably in recent years
(Bastani, Golaghaie, Farahani, & Rafeie, 2013; Lowson et al., 2013; Rob-
inson, Gott, & Ingleton, 2014). One of the studies carried out in Spain
(Celma Vicente, 2001) highlights the lack of care provided for caregivers
in hospitals. This study described the various profiles of hospital com-
panions and suggested a model for continuous training for professionals
aimed at defining a conceptual framework and a working methodology

http://dx.doi.org/10.1016/j.apnr.2015.06.009
0897-1897/© 2015 Elsevier Inc. All rights reserved.
 G. Mora-López et al. / Applied Nursing Research 29 (2016) 242–247
for nursing to facilitate comprehensive care for patients and their
families.
To ascertain the quality of life of companions of patients hospitalized
on a medium- and long-term basis, Flores et al. (2002) conducted a
qualitative study using semi-structured interviews of fifty-six family
caregivers. The study showed that the companions were not comfort-
able in the hospital due to limited space, lack of privacy, and poor qual-
ity of sleep. In psychosocial terms, most caregivers presented anxiety,
fatigue, and strong feelings of loneliness or insecurity (Bektas, Cebeci,
Karazeybek, Sucu, & Gursoy, 2012; Chiu et al., 2014; Nakagami et al.,
1999).
According to Flores et al. (2002), the most important social variable
was economic impact, since some of the family caregivers had had to
give up their jobs due to the patient's hospitalization. The researchers
noted a lack of protocols recognizing the role of the caregiver. Notewor-
thy recent research includes a study by Quero Rufían (2003, 2007). The
main conclusions of this study were that family caregivers have an ac-
tive presence in hospital and are essential to ensure proper patient care.
A transition is the passage between two stable periods of time
(Meleis, 2010). During this period, the individual moves from one
phase, situation or life condition to another. Therefore, transitions are
processes that occur over time and involve reorganization, with a new
sense of purpose. Conditions are the circumstances that influence how
an individual moves towards a transition. These may facilitate or hinder
progress in achieving a healthy transition. These conditions include per-
sonal, community, and social factors. Personal factors encompass cultur-
al significance, beliefs and attitudes, socio-economic status, education
and knowledge, while community conditions refer to community re-
sources, and social factors to social relationships.
Afaf Ibrahim Meleis' transitions theory (Meleis, 2010; Zagonel
Sanson, 1999) was the framework of reference used in the study to
identify factors that can facilitate or hinder the transition process of a
family caregiver of a chronically ill patient in the hospital environment.
3. Objectives
This article aims to analyze the feelings, activities, and perceptions of
family caregivers of dependents in a hospital and to describe the factors
influencing the adaptation process among family caregivers in hospitals,
according to Meleis' transitions theory (Meleis, 2010).
Understanding the experience of caregivers in the hospital environ-
ment is an important factor in improving aspects relating to the com-
prehensive care of dependent patients and their families.
4. Methods
4.1. Research design
In accordance with the objectives of the study, a qualitative phe-
nomenological approach was used, as this is considered highly
appropriate for examining the qualities of human experience
(Wimpenny, 2000).
Giorgi (2006) argues that the participant is the expert on the phe-
nomenon under investigation; the researcher may know about theories
and the literature, but does not know the relevant dimensions of the
specific experience being reported by a participant. Indeed, phenome-
nological research enables the researcher to enter the participant's life
world to gain a deeper understanding of his or her experience
(Balls, 2009).
Symbolic interaction is a hermeneutic process—dialectic since the
time of interpretation and comparison. By contrast, phenomenology de-
scribes the experience as it occurs, devoid of interpretations. In this
study, phenomenology is used to capture and understand symbols and
meanings of family caregivers in a hospital in the cultural environment
of Catalonia, Spain.
243
4.2. Participants
This study included a sample of six family caregivers. The profiles of
the caregivers were obtained through interviews with professionals, su-
pervisors, and nurses in the inpatient hospital units at the Hospital de
Tortosa Verge de la Cinta (Tortosa), and from a literature search. Partic-
ipants were recruited between November 2011 and May 2012 in the
hospital's internal medicine, surgery, and urology units. The criteria
for inclusion were: family caregivers over 18 years old of dependents,
with at least 1 year's evolution of dependence. Based on these criteria,
five female participants and one male were selected, who had the fol-
lowing characteristics:
• A 78-year-old woman, retired, who has cared for her sister with a
history of chronic obstructive pulmonary disease (COPD) for the
last 10 years, admitted for pneumonia and who had been hospital-
ized for 3 days. (C1)
• A 48-year-old woman on leave of absence from work to care for
her mother suffering from Alzheimer's disease and leukemia, ad-
mitted 20 days ago due to general malaise. (C2)
• An 83-year-old man, retired, who cares for his wife with a history
of osteoarthritis, admitted to hospital 25 days ago with a fracture
of the femur. (C3)
• A 77-year-old woman, retired, who cares for her husband who suf-
fers from COPD, who was admitted to hospital 3½ months ago for
septic shock and undergoing a process of rehabilitation. (C4)
• A 63-year-old woman, housewife, accompanying her husband
with a history of Parkinson's disease and heart failure, admitted
to hospital 19 days ago due to hematuria. (C5)
• A 73-year-old woman, retired, who cares for her husband with a
history of Alzheimer's disease who was admitted to hospital
8 days ago for a surgical procedure. (C6)
We stopped the interview process following the principle of satura-
tion of information. We are aware that carer types are very homoge-
neous and that future studies should involve carers with different
features.
5. Data collection
We used an in-depth semi-structured interview with each partici-
pant lasting approximately 1 hour. Table 1 contains sample questions
used in the semi-structured interview. These interviews were audio re-
corded and transcribed in full by the authors of this article. Data analysis
was undertaken by means of in-depth reading of the interviews. The
data analysis was carried out manually, line by line, sentence by sen-
tence, using Glaser and Strauss' constant comparative method as pro-
posed by Medina Moya (2005).
To provide reliable data and triangulate the information, results have
been reviewed by three expert investigators in qualitative methodology
and nursing models.
Table 1
Sample questions.
Illness and hospital admission
Can you explain to me the illness of your family member?
How did you feel when you came to the hospital?
Life in hospital
What tasks do you do to take care of your family member?
How do you feel about the staff?
For those who prefer to be served?
Do you know who the nurse is and who is the nurse assistant?
Where do you eat in the hospital?
Beliefs
Do you believe in God? Do you think that God helps you?
244 G. Mora-López et al. / Applied Nursing Research 29 (2016) 242–247
5.1. Ethical considerations
The ethical aspects of voluntariness, anonymity, and confidentiality
were taken into account. Participants' informed consent was requested
in writing, and the study was approved by the Scientific Office of the
Catalan Health Institute in the Terres de l'Ebre Region and the Medical
Office of Verge de la Cinta Hospital, Tortosa.
6. Results
Most of the participants were female, with a low socio-economic
and educational level, caring for close relatives during their hospital
admission.
The interviews were translated literally from Catalan (the original
language of some accounts) in order to facilitate understanding. Catego-
ries that emerged from the analysis were: cultural beliefs and attitudes,
religious beliefs, meaning of ‘take care’, training and knowledge, socio-
economic status, community and society.
The caregivers' accounts highlight the different determining factors
in the transition process of a chronically ill patient's family caregiver
during the patient's time in hospital.
6.1. Cultural beliefs and attitudes
Among the chronically ill, the onset of the disease and its exacerba-
tion or deterioration affects not only the individual but also their family
unit, and the family caregiver in particular, whose relationship with the
sick person means that they will experience a transition between health
and sickness. The way this impacts on the primary caregiver is a strong
determinant of the transition:
“Look, I've figured it out already, I figured it out on the first day, because
I saw what the situation was, I didn't need to them to tell me. What the
situation was, I said trust in God, let it be what God wants, and let us get
out of this."
[(C4)]
Some of the accounts emphasize the family caregiver's fear of bad
news, such as death:
“Talking to the doctor. (Crying) I can't do it, I can't, it's beyond me. When
I see him, I don't know, I have to be brave, I have to be strong, because of
what they might say to me, and of course I know what they have to say
to me isn't good and … I'm very cowardly in that respect, I can't do it.”
[(C2)]
6.2. Religious beliefs
In the study, religious beliefs are a source of hope and the caregivers
pray for their hospitalized relatives. They believe that God helps them to
overcome situations and, as such, they act as facilitators of the
transition:
"I am a Church person, I don't go much but my religion is inside me. Our
God, there is a God, for me there is a God, I pray to him and ask him for
my husband."
[(C4)]
6.3. Meaning of ‘take care’
In Spain, caring for one's parents is seen as a moral obligation and, as
such, it is a duty inherent to being a daughter. The cultural essence of the
task of caring is predominantly female and, thus, forms part of women's
collective unconscious:
“I do it all myself, being a mother, it comes naturally and I do it all as if
you were at home, I don't know, everything is important for me… Be-
cause that's the way I am, and I like it, when I'm with them I like it, help-
ing, so that they don't suffer."
[(C2)]
The caregivers' accounts show that family is at the heart of care, be-
cause when they are asked who will provide care, no one answers that
the hospital will. According to Quero Rufían (2007), hospital is now per-
ceived as being part of ‘the healing sphere’ and not ‘the caring sphere’. It
is necessary to plan and manage ‘care’ in the hospital environment so
that nurses lead and manage the entire care process. As mentioned
above, care is relegated to the family.
6.4. Training and knowledge
Family caregivers know about the illness of the person they are car-
ing for. They consider themselves an integral part of their care and are
aware of this situation:
“We live together at home, we are on two floors, one on top of the other
and I'm always there with them (the children). But the thing is, she has
Alzheimer's and that means that I've had to keep a closer eye on her.”
[(C2)]
The relative's hospitalization entails a change in the daily routine of
the caregiver, who has to adapt.
At first, the family caregiver begins the process of accompanying the
patient alone, and decides to ask for help later, as a result of fatigue. It is
important that nurses are able to identify the signs and symptoms of fa-
tigue in the caregiver at their onset, and can facilitate their request for
help to prevent discomfort and reduce their suffering.
6.5. Socio-economic status
Some caregivers have to give up their job in order to be able to care
for their relative, and hospitalization is the trigger for this decision:
“At first I had to give up work, I asked for a leave of absence and I had to
give it up, because I think she comes first now. I don't know if I did the
right thing or not, the way things are, I don't know. But first I left my
job and now I am one hundred percent here just for her.”
[(C1)]
It is necessary to be aware of the economic effort made by family
caregivers since, as mentioned above, some people of working age
have to give up their jobs as a result of the hospitalization process, lead-
ing to substantial changes in household incomes. We also observed a
group of pensioners receiving minimum pensions, who had to cover
the costs of caring. Caregivers' financial problems can be a determining
factor in transitions.
6.6. Community
In this study, the hospital is considered as the community where
family caregivers of the patients admitted spend most of their time, re-
lating and living with other caregivers and interacting with healthcare
professionals. As the presence of family caregivers during the hospitali-
zation process is permanent, they often go unnoticed.
Relationship with professionals: According to the study by Quero
Rufían (2007), the relationship between family caregivers and the med-
ical institution is based on the relationship with the individuals therein,
and the relationship with professionals is a determinant factor in this re-
spect. In the present study, the concept of ‘a good relationship’ is based
on aspects such as closeness, emotional care and the speed with which
demands are met:
 G. Mora-López et al. / Applied Nursing Research 29 (2016) 242–247
“When I called, they all came at once. They are all very caring.”
[(C6).]
The length of time spent in hospital is a significant factor in the es-
tablishment of relationships between caregivers and professionals:
“Obviously, they know you better after two or three days.”
[(C3).]
“On the first day they were more distant, but now they know you better,
they are wonderful.”
[(C4).]
Another aspect worthy of mention is that the characteristics of the
unit to which the patient is admitted determine whether the caregivers
perceive the level of care as good or bad. The relatives highlight differ-
ences between units in terms of treatment:
“The other nurses, the ones upstairs, are sillier.”
[(C5)]
And this difference is passed on to other caregivers:
“… I told another caregiver - you'll be taken care of very well here -
you've been put onto a good ward.”
[(C6)]
An in-depth analysis of the accounts shows no clear system for iden-
tifying the professional role in the hospital studied, as caregivers were
unable to distinguish between the various healthcare professionals
working there. Therefore, they attributed responsibility for more tech-
nical tasks to the nurse and activities related to basic needs to the nurs-
ing assistant:
“Well, I don't know which ones are assistants, they come here and
they're very good.”
[(C1)]
“As far as I can see, the one that prepares the medication or working on
the computer is the registered nurse on the ward, and the ones that
come to the rooms, give things out or clean are the other ones.”
[(C5)]
The accounts show that a lack of information, corporatism, and hos-
pital rules isolates the family caregivers and often makes them feel re-
moved from caring for their relative:
“When the doctors come in you're not allowed to stay, and if you're not
careful the doctor leaves and you don't know what's happening."
[(C3)]
“Every doctor tells you something different. One says: ‘today we'll do
this’ and the other one says: ‘he has to be cured properly to do it’ so they
should at least agree.”
[(C5)]
Very strong links are established between different caregivers in the
hospital, and they are a great source of support:
“Yesterday a new woman came and I took her to the cafeteria, and we
were there for a while and the lady told me about her life, and I gave
her some support and some friendship.”
[(C5)]
Family caregivers spend long hours in the hospital with their loved
ones, and have to meet their own needs in an environment that has
not been designed to accommodate them:
245
“I had a shower in the room for three days, but we were alone, we
weren't sharing it with anybody. But you tell me how you manage with
men here, there's no latch or anything.”
[(C4)]
“I go to the toilets in the corridor, I close the door, I take off my clothes, I
get changed and that's it.”
[(C2)]
Finally, the tasks performed by caregivers are important in terms of
both quantity and quality, and imagining the hospital without them is
inconceivable:
“I bring him his lunch every day, because he doesn't want the one here, I
bring him up some milk, I made him some broth yesterday.”
[(C4)]
“If she asks for the commode pan I sort it out for her.”
[(C3)]
While the nurses go from room to room, family caregivers, almost
exclusively, stay with their relative, perform permanent observation
and provide constant companionship. In hospitals in Spain, the needs
of the chronically ill with regard to comfort cannot be adequately ad-
dressed without the role of the caregiver. However, and paradoxically,
caregivers are invisible to most health professionals.
6.7. Society
Society is defined in this study as the caregivers' social environment
outside the hospital, the town in which they live, the social relationships
they have established there, and the institutional and social support that
caregivers receive.
The first measure in nursing therapy, from the standpoint of transi-
tions theory, is to create an individual profile for the preparation of the
individual, thereby enabling researchers to identify different patterns of
experience of the transition. Using this knowledge, after the interviews
were analyzed, the following illustration was created to provide an un-
derstanding of how transition conditions affect the primary caregiver in
hospitals.
Although each condition shown in Fig. 1 has already been discussed,
it should be noted that these can facilitate or hinder the family
caregiver's healthy transition, with adaptation to the situation and the
rearrangement of their roles, beliefs, and redefinition of new
relationships.
The nurse's role is to assess the individual and identify their condi-
tions in order to be able to support and educate the family caregiver
and create optimal conditions in the preparation for the transition. Con-
ditions in transitions do not follow a linear pattern.
Rather, they are, i.e., they may influence each other, as Fig. 1 shows.
7. Discussion
No international study of family caregivers in hospital was found.
Regarding national studies (in Spain), there are few. Only 13 references
were found. All agree that family caregivers in the hospital environment
are essential to maintain patients' daily life activities. They perform ac-
tivities such as monitoring, support, nutrition, and hygiene.
Hospitals were conceived to care for the sick, but during their devel-
opment and modernization, they have not been designed to consider
and care for people as biopsychosocial individuals who are members
of a family system. Caregivers are seen as alien to patients' care. Celma
(2001) observed a lack of care for caregivers in hospitals. Flores et al.
(2002) described the discomfort among caregivers in hospitals due to
246 G. Mora-López et al. / Applied Nursing Research 29 (2016) 242–247
Fig. 1. Conditions of the transition from caregiver families in hospital.
limited space and lack of privacy. These aspects have been highlighted
in this article.
Family caregivers are critical to the daily workings of hospitals, al-
though they are often invisible as far as health and social policies are
concerned. This line of study should be pursued and the results passed
on to professionals, students, healthcare organizations and other insti-
tutions in the entire community, so that their work is recognized.
Recent studies (Foust, Vuckovic, & Henriquez, 2012; Hendrix et al.,
2011; Plank & Cavada, 2012) describe the role of nurses in the transition
from the hospital to the home. However, the present study shows how
caregivers can experience a dynamic process in which they undergo
various transitions during their care, and how nurses need a theoretical
framework to guide their work in ‘caring for the family caregiver’ during
the various processes of transition.
7.1. Study limitations
One major limitation is the sample size. It may be interesting to ex-
plore the health status of the caregivers, most of whom were elderly,
and how their health status impacted transitions. The caregiving expe-
riences reported may not be reflective of carers in other environments
because the sample used in this study was purposive.
8. Conclusions
Although they are only transferable to similar cultural contexts, the
results of this study are very relevant in the Catalonian context of
healthcare and encourage us to review family care in the hospital. Fam-
ily caregivers have an active presence in hospitals, but are invisible to
the healthcare system. Nevertheless, they are used as a resource and
perform a wide range of tasks related to nutrition, hygiene, comfort,
and support, many of which cannot be undertaken by healthcare
professionals.
The hospital was not designed to accommodate caregivers, and the
mechanisms used to meet their needs endanger their privacy, health,
and coexistence in the hospital's rooms. Hospital regulations are seen
as a barrier that limits relationships with professionals, and the attitude
to and relationship with family caregivers on the part of professionals
also varies from one unit to another.
Finally, we believe that it is necessary to reorganize the design of
hospitals and the care process to adapt them to caregivers' needs, there-
by taking advantage of such a rich resource for care. This would increase
both the efficiency of the healthcare model and reinforce the self-
esteem of the family caregivers.
Transitions theory enables us to explain all aspects of transition from
health to illness, and it is, therefore, very useful for improving
healthcare in hospitals, as it provides a holistic understanding of the ex-
perience of the family caregiver. Facilitating successful transitions is
within the scope of the role of professional nurses. Information about
the process should help nurses to plan, assess, and design adequate
nursing interventions to support informal caregivers.
Acknowledgements
The authors acknowledge all the caregivers that have taken part of
this study.
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